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endowarrior877 · 8 years ago

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Endometriosis in the eyes of the beholder.

What is it really like living with endometriosis, a chronic illness? I'm sure the question comes up from time to time, not! Still unless you're living with a chronic illness it's hard to image some of the things us spoonies go through behind closed doors. I've even heard some folks say people with chronic illnesses have it so easy because we can't work and just sit watching crappy day time tele festering away being supported by our government. No, living with a chronic illness isn't a life long holiday whilst being supported by benefits. Instead it's a constant fight and one that costs me in time, money, energy, blood, sweat, tears and pain. It's a constant fight to have a relatively pain free life and a constant fight to not have to take several different medications several times a day. It's the constant fight to be there for appointments and then have to sit and listen to a doctor tell you that "your hot water bottle is the best thing for you, and you just need to get used to the pain and learn how to cope". Yes I was told that today at my appointment for the pain clinic. Smh. It's the constant fight of letting family, friends and sometimes your self down when you've had to cancel yet another plan. It's having to drag your partner away from his brothers wedding because the pain is now to much and i need to go home.

That particular pain and sickness flare would last a constant 72 hours and was probably the only time i could ever say I've felt like I've really had a mental break down. I eventually went to the hospital after the third day of constant pain and throwing up, then got sent home 'by accident' because there wasn't much they could do. Only to go home jump back into bed feeling so weak I was even hallucinating then comes a police van with 1 female officer turning up at my house to pick me up and take me back to the hospital immediately because my blood work came back very bad and my kidneys were shutting down as a result of being so ill the last 3 days. The hospital couldn't get in contact with me directly and as it was literally a matter of life or death they had to get the police to find me. Scary stuff right! I had to be readmitted and kept on a drip constantly for a few days because of how sick I got. It was mortifying and I felt like people were staring as I was being escorted back in to the ER with a police officer. It must have looked like I was some kind of criminal. I wasn't though, just very very sick. It was very scary and one of the most painful flares I've ever had and what made things worse was how scared I was to go to the hospital in the first place because normally they just say there isn't anything they can do and send me home. Another problem people with chronic illnesses have to deal with is having to persuade some doctors that there is something really wrong and you're not just there for a score of drugs or that you're not just being a big baby because of your period. At that point the strongest thing in pain relief being given to me was dihydrocodeine and that didn't do anything for the pain and would just add to the sickness because i would be taking the maximum dose to try and get some relief. During those 3 days of being in constant level 9-10 pain i honestly wished I was dead so many times as the hours passed and the pain stayed. Nothing helped and the pain just roared. It was so upsetting, it was brutal. I didn't sleep for being in so much pain and I was exhausted by the time I went to hospital. It felt like world war 3 was happening in my womb and outer areas. I couldn't eat or drink either which resulted in me being so ill and being so dehydrated and malnourished.

Yup, being chronically ill is not as glamorous as we'd all like it to be and you certainly learn some new life skills when the bomb is dropped and life sticks a label on you that won't go away. In reality being chronically ill and more specifically having endometriosis means that for me, I have to plan carefully even the smallest of trips. I need to take into account my medications and anything else that comes in handy during a flare. It means that I have to carry a boiling hot water bottle around even when I'm out running errands or taking the kids to the park. Being chronically ill means saying no to my favorite foods because somewhere along it's journey from my mouth to the other end it causes some kind of sickness wave or pain attack. Having endometriosis is saying no to getting intimate with the love of my life because the pain is unreal and I can't afford to be so sore the next day. I can't keep calling hubby back from work. Canceling social events and family gatherings are a constant happening and making sure if I am away from the house over night I have access to a bath incase I have a bad flare is a stupid embarrassing must. Its choosing to not even have that one drink no matter what the occasion is because the consequences are not worth it. It's a constant battle of fighting different emotions and feelings; some days are okay and some days are the worst, there isn't many good days and even less great days. It's having to get used to a new body affected by not being able to eat, marked with heat rashes and scars from surgeries. Trying to stay positive when everything around you is sore and hurting is not an easy task. People have referred to endometriosis pains as similar to having a baby, gallbladder stones, kidney stones and appendicitis. I haven't personally suffered anything apart from child birth but I can safely say the pains are sometimes actually worse than labour.

In today's world people with invisible chronic illnesses are not taken seriously by people that we really need to be on our side. We need the support of all doctors and not just top endometriosis specialists that we have to travel hundreds or thousands of miles to see. Unfortunately endometriosis is still treated with methods that were used a 100 years ago. How many other diseases and illnesses are still being treated without of date methods? Not very many. It's one of the only diseases that hasn't moved on with the times. If we had access to better more appropriate care then i bet your bottom dollar you'd see a lot less a&e visits from people with endometriosis too. It's not enough that this disease causes the most debilitating pain a human could ever experience whilst bleeding for god knows how long, but having half the world not really understand what endometriosis really does to a woman and then when we do try and seek professional help because we are so desperate it just feels like a hopeless fight where we are told it's in our head or try bandaid treatment. That's the full package with endometriosis and unless you're rich with a private jet able to pay top dollar to see someone super skilled and fast, there is at the moment a long wait to access care which is resulting in many woman like myself being left in daily debilitating pain.

For anyone newly diagnosed with endometriosis I kind of think my advice would be get ready to fight. Get ready to fight and get yourself educated. Learn about this condition inside out, the good and bad for everything. Your knowledge will save you many unnecessary treatments and will help you search out a surgeon that will be able to help you over time. Remember this is never going to be an overnight fix no matter how skilled your surgeon is. Endometriosis requires the most knowledgeable of doctors and there needs to be more of these people in our local hospitals where everyone can access them and there is more focus on surgical treatments instead of bandaid hormone treatments. There needs to be more awareness all around the world which I think is slowly starting to happen. Aside from all the actual physical symptoms we feel typical to having endo there is a lot more to just having this disease and it's not just about really sore periods. I'm still a firm believer that endometriosis can be treated brilliantly by laparoscopic procedure alone but the key is to finding that magic surgeon. Endometriosis doesn't grow back so it makes sense that removing the 'bad bits' will take away the pain. I'm part of a very good endometriosis resource Facebook page and the amount of woman who are pain free after 1-2 surgeries max is incredible and it gives me so much hope and just because of who they chose to handle their care. I unknowingly made the mistake of moving to the middle of nowhere and then learned about this list of top endometriosis specialists and now the closest to me is the U.K or Germany. Bad timing on my part! I have a good feeling about a Dutch specialist I was recommended to by my FIL's friend who had very bad endometriosis. Funnily enough she started out with the specialist I've just been seeing and had the same issues so asked for a second opinion with a different specialist and agreed to do surgery and found lots. They removed it all and now she's living a great life so I would like to see this doctor and speak with her before i make any rash decisions to rush to Germany in the near future. If she is as good as I hope then maybe she could be added to the list and help others find a good specialist. After asking for a second opinion of my recent MRI results I've asked to be referred to this other Dutch specialist and that should be the ball rolling again and some kind of pain free life will be more realistic. I'm staying positive and hopeful about this one but we will see in due course as ever. This will be my 3rd specialist so hopefully the saying third time lucky will come into play!

#endometriosis #endo #chronicillness #invisibleillness #spoonie #chronicpain #girltalk #periods #treatment #laparoscopy #hormones #hysterectomy #dailylife #routine #blog #personalspace #pain #everyday #thirdtimelucky #beatthis #staystrong #fight #carryon #survive #question #awareness #raiseawareness #love #endowarrior #hope #painfree

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endowarrior877 · 8 years ago

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A formal introduction to Endometriosis.

I'm going to do something a little different today. Instead of focusing on how endometriosis is effecting me at this current moment in time, I'm going to just talk about endometriosis and what it really means. There are a lot of misconceptions and a lack of awareness swirling around endometriosis which can be one of the reasons women go so long struggling to get a proper diagnosis. This disease effects approximately 176 million women all over the world and considering the amount of people suffering with this awful condition there still isn't enough knowledge out there. The sad truth about endometriosis is that we wait years to be finally diagnosed, trying treatments that don't work and won't work, even though we don't actually know what's wrong with us. We live in constant pain which stops us from doing simple tasks like cooking, cleaning and for some even unable to go to work.

I suppose one good thing to mention about this illness is that its not life threatening or terminal, however there is no known cure and just treatments to help manage symptoms. This disease can be managed very well if found early and dealt with properly giving many woman a sense of a normal and relatively pain free life. There isn't enough knowledge about endometriosis, it's causes, symptoms and treatments and that's something that needs to change within the medical sector and also within the general public. Maybe if we were educated on this topic in our younger years we could push for better care right from the beginning and first sign of symptoms.

Endometriosis (en-doe-me-tree-o-sis) is when the tissue of your uterine lining or the lining of your womb is found in other parts of your body. It can be found in the bowel, rectum, bladder, ovaries, kidneys, pouch of douglas and pretty much any where else in the body. There have been reports of endometriosis being found on the lungs, diaphragm and even the brain. The endometriosis tissue acts like it would normally and thickens throughout the month and breaks down. There is no where for this tissue to go and it becomes trapped. This causes pain, adhesions, scaring, infertility and can also lead to fusion of organs. It can effect woman and girls from an early age but normally effects girls from around 14 years and onwards after their first period.

For many woman symptoms can include;

* painful period cramps

* painful abdominal cramping

* heavy periods

* irregular periods

* pain when moving bowels

* pain when passing urine

* pain during and after sex

* painful lower back and pelvic area

* blood in stool or urine

* Nausea and vomiting

* Spotting or bleeding in between periods

* Extreme tiredness or fatigue

* Constipation

* Diarrhea

It is important to speak to your doctor if you are concerned about anything mentioned above. One thing to highlight is that periods shouldn't cause extreme pain and if you are experiencing a lot of pain during your period it's important to speak to your doctor. Cramps are normal to some extent but they shouldn't ever stop you from being able to do something or cause you to cancel plans.

There are many treatments that are available and they can range from birth control to surgery. Treatment will depend on the level of endometriosis present. It's hard to say what should be used because we all respond differently to treatment. In most cases it's just trial and error until something works and that's normally found in some form of hormonal treatment which aims to stop the body producing estrogen. Some people find relief when using birth control or from being induced into menopause. Some woman only find relief in the form of surgery by either a laparoscopic procedure or through a hysterectomy. It's important to do plenty of research to make sure you know the pros and cons for all treatments. I cover some treatments in a previous post so won't spend to much time going into detail about what's available.

As well as treatments offered by the doctors there are some things you can do at home to try and minimize symptoms experienced. These will not cure endometriosis but can offer some mild relief from symptoms. The things mentioned below shouldn't be used as a replacement for any medical advice and if you're interested in knowing more please as always speak to your doctor and do your own research. The results from these can vary from person to person so something may be more effective for someone else and it may have no positive results for another. Personally for me acupuncture was great at relaxing my mind but it didn't take away my pain. Ive spoke with some endo ladies and they have had very good results with acupuncture. Some holistic approaches that have been used to help ease symptoms are;

* Acupuncture.

* The endometriosis diet. Cutting out red meat, alcohol, gluten, caffeine, dairy and processed foods.

* Meditation.

* Crystal healing.

* Herbal remedies. Cinnamon, turmeric and ginger and really good. Herbs can sometimes interact with prescribed medications so please always check with your doctor for possible interactions if unsure.

* Adding omega fish oils to your diet.

* Tens machine.

* Art therapy.

* Essential oils can be helpful and used in a variety of ways. Be sure to do your own research as there are so many it's down to individual preference. Frankincense and lavender are 2 of my favorites.

* Yoga

* Exercise

* CBD oil

* Heat packs or hot water bottle

Endometriosis is not a new disease that's been found recently and has been plaguing woman for some time now. It's important to remember that pain caused by endometriosis may not be cyclical and pain may be felt throughout the month as the body goes through its cycle. If you're experiencing any symptoms then keeping a pain diary is a good way of keeping a track of what's going on and can be helpful for finding any triggers. Without the proper treatment and because of how long it takes to get a diagnosis, woman will continue to suffer in silence for longer than they need to. Considering the fact that it is very possible to have endometriosis and have a relatively pain free life, it's not acceptable that so many woman around the world are experiencing some of the worst imaginable pain. As well as all the physical symptoms endometriosis brings there are also mental health issues that can arise. As well as managing the pain it's important to make sure mental health issues are looked after too. Below are some facts about endometriosis;

* Endometriosis is not contagious.

* Endometriosis is not a sexually transmitted disease or related to STDs.

* Hysterectomy is not a stand alone 'cure' for endometriosis and really there is no cure yet - if you have endometriosis elsewhere in your body getting a hysterectomy will not cure you of the pain being cause in other places.

* For some woman fertility is a huge issue and some woman struggle to get pregnant and/or suffer multiple miscarriages.

* Endometriosis can create and supply its own estrogen.

* Pregnancy is not something that should ever be used or even suggested to help manage symptoms and in some cases endometriosis symptoms do not fade away but get worse. Don't be forced by any health professional who tells you to have a baby just to stop endo pains.

* Endometriosis pains are not just 'normal cramps'.

* Endometriosis is as common as diabetes.

* Most woman find themselves being diagnosed with IBS which although isn't the correct diagnosis, endometriosis can make you have IBS symptoms. This is frustrating for many woman as being misdiagnosed costs years of unwanted and unnecessary pain.

* It's estimated that around 1 in ten woman suffer from endometriosis.

* There's some debate around the exact cause of endometriosis but the main theories are that it's present in the fetus during development. The environment plays a part and being exposed to too many dioxins can cause reproductive issues such as endometriosis. It's caused when the menstrual flow goes backwards and implants itself in places it shouldn't.

* Endometriosis has 4 stages which do not relate to amount pain felt but is based on fertility. Someone with stage 1 endometriosis can have extreme pains and someone with stage 4 have minimal symptoms.

* Symptoms of endometriosis usually start to show after you have your first period but can go unnoticed for years.

* Most ladies go undiagnosed for many years and on average can take between 7-10 years for a diagnosis.

* In the U.K. Endometriosis is the second most common gynecological condition.

* Endometriosis is an estrogen dependent disease which makes treating it difficult as endometriosis creates its own estrogen.

I think we'd all be surprised at how many woman actually have endometriosis. A lot of woman have endometriosis and don't even know and only find out when they have gone for a surgical procedure and it's been found by accident. They have no symptoms and it doesn't cause any problems. A woman may also have a small amount of endometriosis and be in the worst imaginable pain possible. This is why treating this disease is difficult because no two women will have the exact same symptoms. The only true way to diagnose endometriosis is by laparoscopic procedure. For this you are put to sleep and cameras are inserted into holes made by the surgeon to look for endometriosis. Sometimes ultrasound scans or MRIs will be used to diagnose this condition but in most cases endometriosis does not show up on these scans and shouldn't be used as a diagnostic test. As women have to wait years to even get to the stage of being offered a laparoscopy, I think that is something that needs to change too. The quicker we have a diagnosis then the quicker we can try and get on top of symptoms and stop wasting years of our lives.

To end this id just like to say that ultimately we know our bodies better than anyone else. If you think something isn't right then don't stop pushing until you get answers. If I'd have just accepted my IBS diagnosis I honestly don't know what life would be like now and don't want to think about it too much if I'm being honest. We all have the right to a pain free life, unfortunately some of us just have to fight a little harder to get that. Even though that's not fair, it is what it is. Hopefully through means like this we can share our knowledge with each other and even though I can't get back the years I've lost to being in pain, maybe my new found knowledge can help someone and save them a few years of unnecessary pain.

#endometriosis #endo #whatisendometriosis #chronicillness #invisibleillness #diagnose #birthcontrol #menopause #estrogen #explain #learn #educate #knowledgeispower #fight #strengh #hope #findacure #strong #ovary #periods #girltalk #timeofthemonth #letstalk #unite #holistic #acupuncture #endodiet #heatpad #woman #womanstroubles #laparoscopy #mentalhealth #depression #anxiety #love #findstrengh

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endowarrior877 · 8 years ago

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When the results actually say what you want them too.

I find myself angry a lot these days. It doesn't take much to irritate me. Funny that I should mention it because I'm very angry right now. My heart is racing and maybe I shouldn't write anything more just now but I feel I need to while the passion and fire I have in me feels this strong. Before we go any further let's remind ourselves that I never asked to be riddled with diseases. I didn't ask for a life of pain and sadness but beggars can't be choosers.

Yesterday I woke up to the usual debilitating pains in the morning. Nothing new there! Also unlucky for me I'd been visited by the sicky bug and most of the morning throwing up. It was horrible and not pretty. I had a few things to do so it wasn't ideal that I was keeled over in pain over the toilet being sick. I was due to find out my results from my MRI scan by telephone consultation at 12:15 and was super nervous about that. No surprises that the phone call didn't happen on time and he eventually called an hour later. I did most of the talking too. The call itself lasted 8 mins and although was good news in a sense, it was just as equally not nice.

The MRI showed endometriosis and Adenomyosis . Thank FUCK it showed something! I apologize for my language but I can't explain how good it felt being told that. After years of saying there was still something wrong even after my laparoscopy it was there once again for everyone to see. I thought about sending a copy to the doctors in Scotland who wouldn't not budge on the idea of there not being anything there still. That'd show them!

So many MRI scans and ultrasound scans have came back with absolutely nothing to show. When this happens I'm basically told there's nothing there which means there's nothing to treat. In my eyes that's complete bullshit and this scan is like a golden ticket in terms of not letting anyone fob me off with crap about there being nothing there to treat. It's devastating for me leaving an appointment with nothing to see on a scan and no more help because 'there's nothing there' so I am thrilled it's finally viable to the human eye. He explained they had found some on my left ovary and some spots of blood. He also said they had found Adenomyosis and was a aware of that condition. He didn't really say much more about what exactly they had found just that it was there.

I do know a little about the new condition but not a lot so I'm currently doing some research getting myself familiar with that. When asked about going forward he said he didn't know what to do and needed to show my scan to an endometriosis trained radiographer and some other endo trained dude. He said that he would be speaking to them after he's finished speaking with me and he would call me back at the end of the day. I asked him for a rough idea of what he wanted to do and he said that birth control or the menopause injections could be helpful. I politely told him that i am not wanting to go down that road as I have tried all of that and it doesn't work and isn't worth all the horrible side effects that are as problematic as my original symptoms. It was such a short phone call considering what was said and the fact nothing was really discussed about going forward. I did appreciate that he said my case was complex and he needed a second opinion. I was a little concerned we didn't have a plan but he said he would call me back. We ended the call and I was hopeful about everything. You could even go as far as to say I felt like I might be able to kick this in the ass after all.

An hour or so passed and I had that stupid gut feeling he wasn't going to call. I decided that if he hadn't called by 16:30 I'd call his receptionist for an update. I still hadn't heart anything at 16:40 so decided to give them a call. I couldn't get to speak to him which I kind of expected with it being so late but wanted to speak to him as soon as to find out what he wanted to do so asked when would he call me back. She said he could call me back mid next week. I'm at the end of my tether with the pain and even doubling up on my meds isn't working sometimes, something is really seriously causing me some horrific amounts of pain so I'm now in a state of desperation trying to find some solution to the pain. At first I was offered an appointment for the 15th which I wasn't overly happy about. How can being told that I'd be called back the same day then change to 5 days later. My consultation was today and nothing really happened. It felt unfair to wait again. I needed to know what we are gonna do about the pain. I explained how bad my symptoms are and again that the doctor said he would call me back but hadn't but that was the best she could do. I started to get upset so she passed me to someone else.

The new person told me that the only thing they could do was give me an appointment for the pain clinic next week and no speaking with the specialist. I was so confused. Why wasn't I allowed to speak with him at all now? What was going to happen about my new condition and my pre existing one? She told me I could have a telephone consultation on the 21st November. Now the appointment was back but moved even further away. What the hell was going on? I was getting really annoyed and frustrated. I explained that I'd been offered an appointment for the 15th just 5 mins ago and now the only thing available was the 21st. She went away to speak with the other person and comes back and offeres the 15th again so took it. The call ended after everything was arranged and she said I'd get a letter about the appointment in the post.

This brings me to why I'm so angry right now. The post has just arrived and guess what's came? My appointment time for the specialist. It's not the 15th like agreed but it's the 21st November. What the actual fuck!?!? These guys are literally playing with my life. I can't believe it. I'm unable to get in contact with anyone because it's the weekend and now I'm stuck left waiting to speak to a doctor that I really don't think gets endometriosis and woman's issues. I'm angry that he was so late in calling me and then only gives me 8 mins to tell me pretty much life changing information with no proper explanation to anything about what they have found and what that means. I feel completely fobbed off and so upset.

Why should anyone have to fight such a battle to feel a pain free life? I feel like a prisoner trying to get out on parole the way I have to fight for help. I begged the doctor on the phone for surgery because that is really the only way forward. Why can't he just see that if there is still endometriosis and now Adenomyosis added in then clearly I am telling the truth about the severity of my pain and I'm not exaggerating it in the slightest. I can't eat for being in pain, I can't move my bowels because I'm in so much pain and in between that I am constantly feeling a level of horrible cramps that never go away. There is so much I can't do because of my illness and there is something that can be done that isn't in the form of a birth control pill. Life at the moment is spent fighting for that. How sad.

Today I'm really angry and upset more so after getting that letter. I woke up feeling a bit bummed out how date night ended. Date night yesterday was dictated by my illness and we didn't really do much because I wasn't up to it. We did manage to have sex for the first time in about 6 weeks but it hurt so much and after I just lay there crying because I felt like a looser and was close to being sick from the pain. So uncomfortably heartbreaking for both of us, but hubby was there to pick me up and wipe away my tears as usual. What a nice way to end date night though. I'm also extra sore today after doing the deed so I'm feeling a little sarry for myself I think. It's just so frustrating the feeling that you have to fight to have a normal relatively pain free life. Even after this bloody MRI shows things inside me it's still a crazy task trying to get things moving forward after that.

I wasn't expecting to be put through to the specialist when I called but to be messed around like that wasn't very fair and then be sent that appointment. I told the specialist on the phone that the GP had advised me to get in contact because the pain so bad it's effecting day to day tasks. Its starting to feel like I'm not being listened to and because I'm not wanting to try and hormonal treatments for completely valid reasons he's just not being very helpful back.

I feel like I'm running out of time because mentally I don't know how much more I can take of giving each day away to pains that I can't even begin to explain how horrible they feel. This scan proved there is still something very real and very horrible happening within my body. I understand that my case in particular is complex but the way I've been treated following my results and conversations after have been unfair. It is degrading having to beg for someone you don't even know to help you because life is so painful you can't bare to wake up another morning and go through it all again. I just wish my pain would be really taken seriously and respected for what it is.

On the phone the first time, I asked the specialist what to do if I need to speak to a doctor in an emergency when I can control my pain and he said to call the receptionist and ask to speak with him or another one of the 2 endo trained doctors there. I've already tried to get in contact with him whist waiting for this telephone appointment because the pain was out of control and couldn't and was upset again because it feels like he's not there for me.

That's basically what I was asking when I contacted them in the late afternoon and even though I said I'd be happy to see a different doctor nothing came from it. I even explained that the other half is so close to jacking his job again in to look after the kids and me because I'm struggling to do that and for everyone's sake something needs to happen there. I am in so much pain that hubby has to leave work on occasions if my father in law isn't able to help with babysitting and he will come back home to make sure we all eat etc and the kids are looked after because I'm on the floor clutching my tummy with the worst imaginable pain ever, just waiting for my body to finally stop and give me enough breathing space to be able to do something as simple as standing up.

My plan now is to go and see my GP for advice on how to change specialist. We don't agree on each other's approaches to endometriosis and now I've been diagnosed with Adenomyosis as well as endometriosis, I need someone to work with me who is going to be able to fix me eventually. Yes, i know it's still not going to be an over night fix even with the worlds top endometriosis specialist. I'm aware that it will still be a long journey but it will take even longer if I don't do something about it now. I need to get a copy of my medical notes so far, and more importantly a copy of the scan images and then try and find another specialist in endometriosis and Adenomyosis.

There was a little bit of hope that sparked from the first call from the specialist. No plans may have been put in place as such but I had a fresh diagnosis which means a lot. I know that there is still something wrong with me and it's been shown by the MRI. It is shitty how they have messed my appointments around like that and just tried to send me to the pain clinic. In all honesty there is no more pain killers or nerve blockers to try. It's simple. I need what's in me taken out. A true endometriosis specialist would agree and that's what I need to find. One problem I have is that I will definitely have to travel. My first point of call is an endometriosis specialist in Rotterdam who has been recommended to me by a patient who had successful surgery and is now living a pain free life. My GP is also aware of this specialist but I had to wait for my results before discussing anything further about that. I'm hoping I can take my results to my GP and he can refer me to Rotterdam. If not then I'm looking at possibly going private and that way I'll have a lot more control in pushing for the care that I need.

It's mentally demanding having to self advocate and push for things you know should be happening. I'm well aware there's a way of doing things and I have to do things according to procedure but it's taken me years just to get this far. How many more years must I loose to this horrible condition. And I can see it from the doctors side that it must be annoying after they have trained so hard to be met with someone like me who is very educated in their condition and has good grounds for asking for certain treatments because I've done my research. Like I've said before with a proper skilled endometriosis specialist I have a good chance of only requiring one or two surgeries and then things might really start looking up. I don't mean to challenge doctors on their approaches but if I don't then ultimately I live longer in pain and when the pain is this bad it is ridiculously hard, life right now is spent just trying to survive and recovering from flares as quickly as I can before I'm being catapulted right back into another one.

This is never going to stop without surgery and unfortunately the sad truth is that myself and thousands of woman will spend years trying to persuade doctors to do this or that whilst living in the worst amounts of pain imaginable. When we do finally find that doctor that listens completely you look back and think of the life that you could of had. I still can't believe they sent me the later appointment, I don't think that was accidental at all.

So just as quickly as things looked like they might be changing in a more positive way and there was a light at the end of the tunnel, after all that's happened after the first telephone call I'm not sure what really is going to happen next? The main thing to take from this and the only thing I really know for sure is that I've got a new recent diagnosis and that means a lot. I'm also now having to get used to having a second condition. I've always thought I may have this but since I've had such a hard time in getting this far with my endometriosis diagnoses, I decided I wouldn't ever mention it because it would just be a waste of time. Imagine how many other woman don't mention things because there simply is no point. It's sad to think I'm physically not well a lot of the time. As annoying as it would be, it would still be so much easier if this just was in my head but unfortunately it's not and thanks the MRI scan I have more evidence showing me what's causing this awful pain. An building up a strong case for surgical treatment.

I'm currently sat on the sofa and my pain is about a 6 on the pain scale and that is after a shot of morphine so even though I'm trying to keep the heat of off my stomach, I'm having to use it to try and get some relief. I've not managed to eat much but I've had 4 shakes which is the equivalent to 1200 calories and 24 grams of protein and all my vitamins and minerals. I'm just trying to find the right moment to get up and start making dinner for everyone. That will be the first bit of actual food I've eaten because I've been so sore and nauseated again. Hopefully I'll perk up a little as the evening goes on and cheer up a little. I can't help but get down in the dumps about things. I do wonder what will happen next though...

The other half and my family and friends are seeing this as a victory and they are right in a sense but it does still feel like I've got such a long way to go before I can have some form of pain free life.

#endometriosis #endo #pain #dailypain #life #blog #post #speakout #notfair #listen #understand #surgery #specialist #endospecialist #Adenomyosis #womb #bleed #chronic #chronicillness #invisibleillness #nocure #findacure #angry #depression #upset #cry #help #strong #fight #laprascopy #timeofthemonth #read #share #raiseawareness #teach #educate #learn #disease #chroniccondition #meds #dailypain #cramps #emotions #mentalhealth #humanbeing #mri #scan #tears #staystrong #yellowribbon #endowarror #heatpad #hotwaterbottle #datenight #movie #cuddles #embarrasment

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endowarrior877 · 8 years ago

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Dieticians, MRI's & funny feelings in my eyes.

Good afternoon. I've been a tad quite for a bit as I've been having a few not so good days. I'm sure the last thing I was moaning about was that I was away for some tests and appointments this week. Well I had my MRI scan and met with the dietician. The morning that I was due to go and get everything done was a pain in the ass. I'd woke up and thought I'd got away with the morning flare. It was just delayed though and peaked just before the big one left for school so that wasn't too bad, at least I didn't have to be in mummy mode. Teeny was still in bed so double win. My baseline pain lasted pretty much all day and when they hadn't settled after all my morning meds I was considering taking an additional half dose. Doing that can make me really sick so I just dealt with the pains. I couldn't afford to get sick and then miss the scan.

Whilst I was on the sofa waiting for the pains to ease up enough to let me get ready I had the daft idea to draw around the areas where the pain so the doctors could see it when I went in. I was that sore so thought this would be a good way to show where the pain is today. Silly me though and I had to get a shower shortly after and they washed off. DOH! I did take a picture of my tummy but forgot in the midst of all the hospital madness to show it to anyone - two appointments, 8 floors, surprise injections and a different language and things aren't as straight forward as they would be back in Scotland.

So far every doctor in Holland when they have met me has shook my hand. I like that approach and it breaks the ice a little. I do feel sorry that they have to touch my sweaty hand however. I don't know why but my palms get so sweaty sometimes. We shook hands and I took a seat. I ask in Dutch if she speaks English and say that I don't know a lot of Dutch. Luckily for me this doctor does so I'm safe for now. I am learning how to talk, read and write Dutch but I'm not at the stage yet where I can discus my medical information fluently. Now, if we had been talking about colours, days or the week, animals and my favorite things to say; are you ready? good night and I love you, then I wouldn't have a problem at all but we were here to talk about food, wombs, bowel moments and everything in between so it was important that I spoke in a clear understandable way. It wasn't the time to try and improve my Dutch.

The meeting went really well, better than I'd expected in fact and she got to know what I do and don't eat for what ever reason, why I struggle to eat at times and things to do to try and make sure I'm getting all the calories, proteins and other important stuff. At the end I was weighed. I still don't understand the Scottish doctors and their thoughts about me being underweight because I was supposedly anorexic. I don't get how they never weighed me unless I asked someone or how I was told on a few occasions it wasn't necessary for me to give them food diaries. It is mind baffling. My goal is to go up 1 or 2 dress sizes. I'm miserable about how I look but most importantly I'm not healthy because of it.

The dietician was a bit confused as to how she could help and it's a tough one to deal with because I didn't really need to be told anything I didn't already know. She asked me what I wanted from her? I told her that I need someone there to monitor how my weight is and the protein shakes that she arranged for me during our first initial telephone conversation were extremely helpful so they should continue if possible. We both know that there isn't much she can do apart from monitor my weight and prescribe the protein shakes. Other than that if she has a magic wand somewhere that can make me better then I'll obviously take that option, it's not Harry Potter though so we can just go with the protein shakes and monitoring for the time being.

I weighed 45kg so I've managed to put on 2kg in the space of 2 weeks. Not a lot but at least it's a small improvement. I think I have the protein shakes to thank for that though. I have to go back so see her on the 27th November when I'm back to see the psychologist and hopefully I'll have managed to put some more weight on and if not, well at least I now have the additional support of the dietician to try and help with things.

We shook hands after having a chat about our kids and she even drew out a little map showing me how to get to the radiology department. I left feeling happier that it wasn't just little old me trying to do the impossible and get some extra weight on these bones of mine. She didn't judge me and at no point did she suggest or insinuate that she thought the only thing that was wrong with me was an eating disorder which is why I'm not putting on any weight. She was very kind and really listened to me and I'm very thankful for that.

After getting myself in a panic because I got off on the 6th floor and not the ground one, I had finally made it to the radiology department and went to get booked in. After speaking with the receptionist, she speaks English and also asks if I'll be able to fill out the form with the safety questions. Unfortunately for me it's all in Dutch so it would take me an hour or so to type it all out on my phone to translate it. She kindly offers to fill the form in for me and asks me the questions. I feel terrible and a bit ignorant for not being able to do it myself. I will one day be able to confidently and fluently be able to read, write and speak Dutch but it's taking me much longer than I thought it would because my heads up my arse most of the time with pain and brain fog. I'll get there, maybe just a little bit slower than I'd have hoped.

The form is filled in and she tells me to take a seat and wait to be called. The waiting room is pretty full so I find and empty seat. I think I waited a little over half an hour and then my name was called. It's funny because I had a little giggle thinking this was more like home having to wait at scans. Everyone was looking bored and keen to just get in and get away. I don't think I've ever had a scan on time in Scotland. Everything in Holland runs faster and on time more and I've noticed that I am not spending more time in waiting rooms than doctors rooms now.

I shake hands with the person who called my name and I'm taken to a little cubicle. I'm not joking it was really small and the smallest cubicle I've ever been in. I'm told to get ready for the scan and to take everything off minus my t-shirt, socks and knickers. Usually I'd be given a gown in Scotland so hadn't brought anything with me and was wearing a bodysuit with my jeans. I kept that on and then made my way out of the cubicle to the staff. I was taken over to the machine and felt so naked and cold. Next time I'll bring my dressing gown and then at least I'll be able to cover up and be a little warmer.

There's 2 nurses waiting for me and one tells me to hop on the bed. I'm getting comfortable and 5 mins later one of them puts a towel over my legs to cover me up a little. One of them starts to explain why I'm here and asked me how I was with the injection? I panicked because no one had told me about an injection and I don't like them at all. They are sore when they are done wrong hurt like hell, for some reason I'm unlucky and this has happened on so many occasions and I can get sick sometimes from any new meds. At first I declined it but after I said that, the one of the nurses said I would comprise my images and then they wouldn't be able to see anything. I felt like if I didn't do it then i would be jeopardizing my results. I kind of felt like I had to do it. I know I still could have declined but then I would have possible messed up my results and I can't afford to do that. I decided to get it and after my failing to get the cannula in my left arm (ouch!) they had to try the right and then it was in. The contrasting agent was administered and was slightly uncomfortable when going in.

The nurses put my arms in a stretched position above my head so they can get clearer images. I actually lay like this when I'm having a flare so it can get really uncomfortable fast sometimes putting extra strain on my teeny boney shoulders. I do it and try and get as comfortable as I can. After i was shivering loads one of the nursery gets a blanket to warm me up a bit. I'm also given a buzzer to press if I need them for anything.

For all my previous MRI scans in Scotland I was normally given music to listen to which took my mind of being in such a small space and also took my mind off the loud noises. I'm not a fan of loud bangs so would have preferred something to distract me a bit. It wasn't offered but maybe if I had of asked it would have been an option as I did have earphones on. The bed started to move into the machine and I was panicking, my heart was racing. I could see everything but my eyes felt really weird and heavy. I don't know if that was to do with the contrasting agent but I felt more comfortable focusing on one spot instead of moving my eyes and feeling that weird feeling. I started to cry and no tears came out which made me panic even more. I tried to close my eyes and forget where I was and go some place else. It didn't work and my mind was stuck on repeat mode asking ridiculous questions like, why the hell am I so ill? Is this ever going to stop? Will they even find anything? If they didn't then why? It felt like ages I was in there. My arms started getting really sore so after I couldn't take it any more I pressed the buzzer. I wasn't sure if I could move them down and didn't want to comprise the images again, I'd always been told to stay very still. Someone came on to speak to me through the ear phones and just said to wait 5 more minutes and they would be finished. Then they were gone. I asked if anyone could here me and no one replied. I ended up just moving my arms and then she came on after another little while had passed and said they were just going to do 3 more images and then I'd be done. The mic went off again so I just closed my eyes and waited for it to be over. The noises eventually stopped and it was over.

The nurses said I may have double vision after the injection but I just felt that my eyes were heavy. I was helped off the bed and escorted back to the cubicle but not before walking into a wall. Ouch! I start to get changed and don't feel so good. I'm also really emotional and just sat crying again. I hate it when I can't stop crying, my eyes were spitting tears now though so I wasn't worried there was something wrong with my eyes. Both times when I was getting undressed and dressed one of the nurses came into the cubicle without knocking or letting me know she was coming in. When she saw I was getting changed she closed the door. That made me more upset and I felt she should have knocked before coming in at least. I felt the nurses and radiographer were a bit cold and short with me at times and it upset me that I was told to press the buzzer if I needed to but when I did no one even gave me the chance to say anything or come check how I was. I also was upset how the injection situation was handled and that I couldn't even get changed in peace.

I left the hospital feeling upset, crampy, sicky and my arms hurt where the needles had been placed. In fact my arms still hurt today when I bend them. I found where the car was parked and made the half an hour drive home. At least the first half went really good though and it wasn't that the second part went bad it was just my feelings got hurt a little. I find out the results of the scan this Friday and I'm really interested to hear if anything is shown especially after using the contrasting agent. I don't think I'll get that again because I was so sick after I got home, it was horrible.

I've had 3 MRI scans before this one. I don't like being stuck in a small spaces but there are worse things to go through so I don't really make a big deal about it. All my previous scans were too look for endometriosis or bowel issues. All scans have always come back with nothing to show and I'm never surprised because these types of scans rarely show any endometriosis and of course wouldn't show a bowel disease because I don't have one. It's crazy how this is still being used as a diagnostic test when in most cases it doesn't show anything. People are being told they don't have endometriosis because tests come back with nothing to see. ladies are leaving appointments feeling lost and confused and still no answer to what's causing their pain. I've actually been told that because my scan came back negative i did not have endometriosis. A few months later the laparoscopy would prove that scan wrong though. It's heartbreak for every endo warrior when they are told there isn't anything there especially when there is.

I'm also forever comparing the difference between the health care in Holland and Scotland since we moved here. It's kind of hard not to. My overall experience in Scotland was pretty grim so it's pleasantly interesting to see how things differ over here. So far my overall experience in this country has been positive which I'm happy about. I'm not cured of my disease and I don't have my life back as such but every time I've seen a doctor I've always been taken seriously and treated with respect. Things are moving forward a little faster and with a lot less grief. I've got lots and lots of miserable stories about my experiences with doctors in Scotland but I'll save them for another time.

I will finish it with this final thought. It's not nice when you are made to feel shit at a doctors appointment for what ever reason. It's these upsetting appointments which make me hate myself for having this stupid disease something I was more than likely born with. The thing is the doctors and nurses and everything in between are paid to be there. They choose to be there and can leave when every they want, albeit they might not get paid but they can leave and it won't cause them any physical harm. Im not there out of choice. I'm there because I need to be. No one pays me for my time, quite the opposite in fact and eventually it adds up going to several appointments a month and in most cases it doesn't make me any better or cure me of my condition immediately - it's a slow journey. If I don't go to an appointment or I leave in the middle of an appointment then I physically and mentally suffer as a consequence. If I didn't need to be there I wouldn't, believe me. If I could change my situation, you bet ya I would. With all that in mind it would just be nice to have all my appointments go as well as the first one. I don't want any special treatment, sympathy, candy, drugs, cuddles and kisses. I just want to be treated with dignity, respect and be listened to. Its not nice to feel like such a burden to everyone for something that's completely out of my hands.

If you're reading this and you're a fellow spoonie, I hope your day has been pain free!

#endo #endometriosis #pain #painfreelife #hotwaterbottle #heat #heatpad #spoonie #chronicillness #chroniclife #hospital #scan #mri #dietician #food #proteinshakes #gains #scared #crying #feeling #listen #care #help #strong #fight #power #raiseawareness #speakout #endowarrior #woman #periods #womb #bowels #sickness #dignity #respect #kindness #dontjudge #invisibleillness

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endowarrior877 · 8 years ago

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If I could make pies this I'd be a happy chappy. Practice makes perfect and all that jazz and I'm sure I could manage something as pretty as this. I love them all 😍!! I don't think I would get away making this with gluten free pastry. That stuff is so fragile I don't think it would hand all the intricate details. I've been cooking so many new recipes so I might try a more simpler version of one of these towards the end of the week.

Magical pies ✨ by karinprieffboschek

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endowarrior877 · 8 years ago

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Funny I should see this after my last post! This is so true. I always feel like I'm better for keeping all my emotions in but really I'm not and getting them out in the open makes me feel ten times better and like a weight has been lifted.

Love this!!

💛💛💛💛

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endowarrior877 · 8 years ago

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Weekend feelings

Well that's the weekend officially over. It's back to early rises for school and back to the weekly routine. Last week ended with Friday being a really crappy day. The morning brought my usual pain attacks and teeny was on the war path and was giving me a run for my money with the terrible twos. Everything I tried to do went wrong somehow and I had the most awkward conversation when the hospital called because they couldn't speak English and I couldn't speak Dutch. Someone called back who spoke English and I got my psychologist appointment arranged but I just felt stupid because I couldn't speak to them. My hormones were being really funny and I was angry and really irritable over nothing. The other half came home from work and I was just being super grumpy and snapping for no reason. I'd pissed everyone off with my mood and now i was feeling sorry for myself.

I'm still very much still learning how to cope with everything that comes with being diagnosed with a chronic illness. I do struggle when the pain starts to become more constant, I don't know how to cope. I think I'm too hard on myself at times and I need to give myself a break. I've accepted the pain but I haven't accepted it, if that makes sense.

On Friday I managed to upset the people who are most closest to me just because I was upset and frustrated about how life is for me. I feel held back, unable to do things i want, when I want. I've never been one to be forced to do something I didn't want to do and since being diagnosed I've had to change so much in my life so that I can try and help myself. At times it's like I'm being forced to do stuff I don't want to do. I can say screw it, I'm gonna go out on a Friday and get drunk and dance the night away or eat bad but it will only effect me badly so it's for the greater good however frustrating it is.

A typical weekend is not the same as it used to be and I struggle to come to terms with that too. I miss the old days of when I had fun and was so much more active physically and socially. I miss the old me. We used to do things as a family just because we could and now my illness dictates everything we do. The school run, lunch time, working, shopping, bathing the kids, trip to the zoo, an appointment with the bank, parents night and so many more things are all controlled by how I am feeling because of my illness. Trips out always require bags of supplies, medicine, hot water bottle, snack, pad incase of emergency and is there a bath where we are going? That's not including the kids stuff, it's like we are going on holiday sometimes just to go out for the day.

I could be in the midst of a killer flare at any of these times and if I'm not in pain then I'm either exhausted, upset, pissed off or not interested in what ever I'm doing because I just feel so sorry for myself or because I'm trying to recover from a recent flare. I feel trapped in my own body that is literally at times trying to destroy me. I can't just go to work and forget about it, if I went to work I'd just flare there and that wouldn't be awkward at all. There's no respite, escaping or switching off because before too long the pain has surged up again and I'm having to lay down, get a bath and take extra meds. Now we decide what we are doing as late as possible in order to see if I'll be able to manage what ever it is. It's so embarrassing carry a hot water bottle everywhere I go and that's why I can't do things like modeling any more, could you image my hot water bottle in every shoot? If I look back in family photos over the last year especially, the hot water bottle is always on me or beside me because I've chucked it away in a rage for the photo but some part still remains showing. I'm on to my third hot water bottle since I moved here 4 months ago. That's how often it's in use, they just get wrecked so fast that way.

Before things got bad every day, on a Friday for example the big one would come home from school, have lunch, play out then after dinner I'd walk her to youth club, come home and do the same when it was home time. She would go to bed and me and the other half would crack a bottle of rum and just relax after another week. We've always had fun from the day we met and I've always loved how much he makes me laugh. He makes me laugh even more when I'm drunk and there's nothing better than laughing so much that your cheeks hurt. Now I'm just a moody cow and the jokes are always lost with me now. He still tries to make me laugh though which is sweet.

I've also become somewhat obsessed with my condition and I've felt I've had to because of all the experiences where there hasn't been enough knowledge and it's cost me unwanted pain or emotional trauma. The more I've learned about my condition, the more I've been able to help myself and also understand what help i need from the doctors. I'm still learning new stuff all the time about my condition and I'll still be learning for a long time no doubt until there is eventually a cure.

With Friday being such a flop when the kids went to bed me and hubby started having a chat about the day and how it had been so crap. Things were a bit frosty between up and no surprise with my being a cranky mare all day. It was my fault for creating such a negative vibe and I knew that. I apologized and I could feel I had bit more to say. Hubby just sat and listened while i off loaded all my troubles. I'd been bottling things up recently and I got quite emotional. I love my family so much and it kills me knowing my condition effects everyone is such a big way. 2 weeks ago things were that bad I was seriously thinking hubby was better out of work being here for the kids. I'm sick and there's nothing no one can do apart from work around my pain, sickness and fatigue. I feel like a burden at times and hate how people worry over my health and how I am doing. I shouldn't get angry and take it out on everyone in my path and that's what I need help with. I can't cope with the pain, I don't know how to.

We talked for ages and just before we wrapped things up I could see how upsetting it was for hubby to see me breaking my heart about how I feel about life. In Scotland I'd been accused of being a drug seeker, attention seeking and anorexic by some of the doctors. It really upset me because I have suffered so much and for crazy reasons and all of which has kind of broke me down over time. Life is super hard sometimes and it just feels like I'm trying to survive sometimes, trying to convince doctors there is something wrong. There is no one that I feel relates to me so I just feel alone and sore. It feels like I've got the world on my shoulders sometimes.

Hubby took charge of our chat and said I need to do something to help myself. He is right and ain't no one going to make me happy but me. We agreed that I now just wait in fear of the next pain episode, which isn't healthy for me. I need to try and fill my non painful times with fun positive activities. The more positive I am then I'll be able to deal with the painful times a bit better. That is fact. That being said the day after I tried really really hard to be involved in stuff going on in the house and tried not to feel sorry for myself just waiting for the next bout of pain. The big one has a school project to do and asked me to help with that. I said yes and we got crafty at the table and made some great progress with her box for charity. By the end of the session the four of us were all round the table chatting and having fun. We were a normal family. It was a really fun afternoon and although I had a lot of pain in the morning and my baseline pain remained I didn't let that get in the way of making the most of the day and being able to sit down with the family doing something. I can't let endometriosis dictate my life.

Sunday I did the same and although I felt so sick when we went out to the supermarket to get the weekly shop, so bad that opa had to ask the shop assistant if I could use a toilet to be sick, to then be taken in the back of the strange Dutch shop to use the staff ones, regardless of feeling embarrassed and annoyed that I couldn't shop in peace I still came home and did what I love to do most, cooking.

I made a pizza pie thingy which was really fun to make and turned out really good. I've not long pulled out a chocolate bundt cake from the oven too. I took myself off to the beach for 10 mins to sit and collect my thoughts before I went to the shops because I could. I've tried to make the most out of a lot of times this weekend and it's been nice to have some good things to say that came from that time. I didn't do anything outrageous just simple things I enjoy doing in the house and in return I went to bed feeling like I'd accomplished something apart from dealing with the pain, I'd successfully made two new recipes, didn't cancel shopping like I'd normally do and went out to clear my head when I could feel it getting busy again instead of flipping the lid and shouting at everyone.

Another thing that happened over the weekend was that I asked the eldest to say 3 words to describe each one of us. I was cooking dinner one night and everyone was in the kitchen just messing around. I wasn't meaning it to be serious either, I don't even know what made me ask her these questions but I'm so glad I did. We all took a turn to say something nice about each other and it was fun because we had to guess who the words were about. It was kind of like a mini therapy session in the end and everyone was looking happy at being told nice things about themselves. We like to joke and mess around and I was expecting everyone to say something funny and cheeky but it was nice to just be reminded and remind the people I love how amazing I think they are and vice versa. It made me sad but only for a moment; the happiness felt then was how the house used to be all the time before i was sore every day. We spend too much time in the routine of mundane life and it was nice to take stop and take a moment to show each other some random love.

I do know that i struggle with being in pain and the changes I've had to make to make my life a little better. Since we've moved into our new house the pain has been more constant than usual and I've let it get on top of me again. I felt like talking to hubby on Friday was a big kick up the butt for me and Ive got two choices; I can let my illness define who I am and sink away in a pool of misery and depression or I can face the facts and understand I've got this illness that i can't shake - there isn't a cure just now, but things will get better it's just going to take a bit of time. Every day is a fight and sometimes for different reasons than the day before. On top of being chronically ill I'm a mother to two young kids and I want the best for them, I've moved to a foreign country where I don't speak the language. Life isn't easy at the best of times. When I am having a bad day though it's the kids that keep me going.

So I hope to carry this train of though on and enjoy the week for what it is. I have 3 appointments at the hospital this week; MRI, dietitian and a consultation with the specialist to discuss the MRI. I'm also hoping to take teeny to her first Dutch toddler group and hopefully be able to make my own friends there too. I'll try and put my anxiety and nerves aside for the greater good. Toddler group will be brilliant for teeny, I know she will love the activities and interaction but it will be very good for me too and I need to interact with people that are not doctors and specialists. Here's hoping there will be some good times this week regardless of how much pain I experience.

The image I've used here is my view from when I went to the beach. I'm not a fan of water but you can't deny that doesn't look pretty!

#endo #endometriosis #weekend #friday #pain #change #flare #guilt #fear #cantcope #staystrong #fight #kindnessinwords #kind #strenght #family #pissedoff #trust #love #relationship #standbyyourman #medical #knowledge #knowledgeispower #cooking #lovecooking #baking #chocolatecake #pizzapie #blog #dailylife #moans #thinkpositive #bepositive #mentalhealth

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endowarrior877 · 8 years ago

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Couldn't have said it better myself

👏🏼👏🏼

#endometriosis #feelbetter #raiseawareness #teach #endo #endosister #endowarrior #yellowribbon #staystrong #love #hope #survive #trust #power #do #strong #standstrong #girls #woman #letstalk #peace #strength

hey if ur reading this and ur in a bad spot mentally or anything i hope u feel better soon and have a good day ✨⭐️✨

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endowarrior877 · 8 years ago

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If your compassion doesn’t include yourself it is incomplete.

Buddha (via quoteandinspire)

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endowarrior877 · 8 years ago

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Endometriosis and my treatment experiences.

If your doctor thinks that you might have endometriosis, they may offer various treatments to see if that helps with symptoms at first. This is normally offered before any surgical treatment/diagnosis' are done but as the only way to diagnose endometriosis is by doing a laparoscopy sometimes it can be a long wait for woman before they get to that stage. This prolongs the pain and symptoms woman suffer greatly and impacts on a woman's day to day life.

On average it takes around 7 years for a diagnosis which is a massively long time and can cost some woman years of their lives. Although I did unknowingly waste about 6/7 years thinking my problems were caused by a bowel issue, from the first time I spoke to the GP about the possibility of me having endometriosis to my actual diagnosis from laprascopy in October 2016, the whole time was just over a year and a half. I could spend hours thinking if only I'd have known about this condition earlier then I could have saved myself some pain and time or if doctors would have picked up my symptoms up sooner would I have suffered any less? Too right i think more education should be offered to trained medical professionals and the general public because this disease is actually more common than people think. If we all knew more about it maybe it could save woman so many years. I can't get those years back but other woman don't have to give up so much of their precious life. Thinking about the what ifs and buts won't help my current situation so there's no point dwelling on it. It is what it is. I am lucky in the sense that as soon as thought I had endometriosis I made it my mission to at least push for the laprascopy for answers and not just try treatments. I still don't quite think It makes sense to try and treat something without knowing if it definitely is that for sure. I got my answers after surgery but sadly didn't expect to have to still fight for a pain free life but there you go. Can't have your cake and eat it I guess!

It's crazy and upsetting to think that I'm not the only one living like this crazy nightmare and that there are so many woman out there just simply surviving and not living due to being in constant pain. As well as having a good understanding of my condition, I have a very good support network especially hubby and it has at times been a team effort in the quest to getting me my life back. So down below are the treatments I've tried with some general info and how I found them. Remember what has worked for me may not have the same results for someone else and the same for anything that hasn't worked for me, it could be great for someone else. In most cases some of the things on here do work for a lot of woman and their endometriosis is manageable. Endometriosis is completely personal and unique in each case so we all react different to treatments. Making sure you have done plenty research on what you're taking is the best way of really knowing if what you're taking will actually help and why or why not.

The first treatment I was offered was birth control pills. These types of meds are for usually used for contraception but over the years the pill has been used to treat a range of other conditions such as: irregular periods, polycystic ovary syndrome, migraines, acne and of course endometriosis. The pill has been used for decades to help with endometriosis and although birth control will not cure the disease, taking this back to back and not having a break for 7 days every 3 weeks can help lesson symptoms.

Unless you are using the mini pill most types will contain both progestin and estrogen. These hormones are something your body creates naturally. The pill taken continuously through out the month will stop your period. It is advised to let your body have a period every 3 months for a week. This can be an effective method to relieve symptoms but it didn't help for me. Hormonal treatments haven't worked for me mainly because I believe the endometriosis I have in my body is feeding itself as it produces its own estrogen. My periods did stop until it was time to take a week break but i still continued to experience pain including when moving my bowels, i suffered bad migraines, really bad acne, weight increased and it effected my emotions.

The second treatment i tried was a course Provera and I didn't last long on this one. This is taken in the form of a tablet and is basically just progesterone or progestins and works to decrease the estrogen in the body. This was prescribed before I had my official diagnosis. I'm not sure of my exact dose but I started on the highest and cut that in half after I was experiencing some not nice side effects. Some of these included migraine, sickness and leg pains. All in all I lasted a month on this treatment but the side effects were almost as annoying as my original symptoms so I was put back on to birth control instead. This can also be given in an injection form and belongs to the same drug family as the implant that goes in your arm and the Marina coil.

After the failed Provera I was referred to the gynecology team at my local hospital to see if they could help. As I was already known from my recent pregnancy I didn't need to do any introductions we just got straight down to business. It was suggested that because of my c-section and no obvious signs of endometriosis being found then, there was a good chance that this was in my head and my mind was tricking my nerves into thinking that they were feeling pain. Somehow my mind had got into the habit of making me feel the worst imaginable pain possible. Yes I know this all may seem a little odd but that's what I was told. Lucky for me there was a drug that would help my mind stop telling the nerves they were in pain. This would be treatment number three and was Amitriptyline.

It wasn't very nice the feeling I was being made out to simply have all of this in my head and it seemed so far fetched that my mind could cause this much actual physical pain. There was no denying that in the middle of a flare I was in a lot of pain, but was it only happening because my nerves were damaged from previous pain episodes and were simply stuck in the habit of causing me phantom like pains? This particular drug isn't a pain killer and can be used for a range of problems and can be an ideal solution for some people. It wasn't in my case which was disappointing. I knew people on these for other things and they helped so I did think they might be good.

You have to build up a tolerance with this medicine, it doesn't just work after immediately taking. I waited 3 weeks and was always super tired. It was great at bed time because I could fall asleep so easily but when the morning time came around i struggled to get up and could have slept all day if that was possible. I slowly increased the dosage up to 3 tablets a night at the recommendation of the doctor but as a result was so tired and groggy in the morning. It hadn't done anything for my pain, especially bowel movements so after another appointment to complain about my pain levels, I was passed on to the endometriosis specialist team in a different hospital over an hour away to see if they could help. During this time I was told to stay on the birth control and Amitriptyline. I really didn't feel it was necessary to take something and feel the same pain and other additional symptoms so I weaned myself slowly off the amitriptyline and felt better after I stopped taking it. I stayed on the birth control until i could see the specialist. Playing with my periods like that would always cost me In pain so keeping that the same would save me any additional flares and pain.

I saw the specialist and was very happy at feeling like I was being listened too for once. He didn't dismiss my pain or tell me it was in my head. The fourth treatment I had was a diagnostic laparoscopy with removal of endometriosis if necessary. Unlucky for me it was necessary and they removed some of endometriosis they found and sent some away to be tested which came back positive for endometriosis. They couldn't remove it all and some still remains on one of my kidneys and I'm pretty sure I have some hiding in my bowels, bladder and possibly other places too eg the pouch of Douglas. In terms of pain management it did and didn't do anything. The easiest way I can explain it is like this; Its like I have blankets of pain on my tummy. The lap removed 5 of the pain blankets but left about 10. Some areas especially in my left side where I did have lots pain has gone down since the lap, but others areas of pain have stayed and got much worse mainly on my right side and center.

When you have a laparoscopic procedure you are put to sleep and then holes are placed in your tummy then gas and cameras are inserted through the tubes. The gas opens and lifts your body allowing the surgeon room to work and look around with the cameras. The cameras are there to look at the parts of the body and find any endo. Any endometriosis is then cut away or an later depending on the surgeon. If endometriosis is left or ablated this can sometimes be an indication that you need a surgeon with more expertise. That isn't a dig at the surgeon with less knowledge in any way. It's just that endometriosis is a highly complex disease and needs to be tackled by someone who fully understands it inside and out. An endometriosis specialist will have done further education and training than a standard gynecologist and in more cases isn't specialized in endometriosis. This is why one of the most important things to do in order to deal this condition is have a doctor trained in that field.

Sometimes endometriosis is burnt away with ablation but in order to stand a real chance and live a somewhat pain free life, it should be cut out at the root always. This is better as it removes all of the unwanted cells attacking the healthy parts of the body. Hysterectomies and removal of ovaries can be done during this procedure too if necessary. Recovery time is so important and if you're booked in for a lap please make sure you rest up after. Although it may seem like it's just tiny holes in your body, they are there so that the surgeon didn't have to cut you open from hip to hip. If the laprascopy is done by a trained endo specialist then there is a real good chance that surgery will be a complete success and will greatly improve the patients quality of life. In 80% of cases woman were living pain free lives, the other 20% was missing endometriosis because it can be hidden anywhere. It's been found on the lungs and brain. Ablation surgery to remove endometriosis simple isn't good enough and it will just grow back causing pain if it isn't completely removed.

I kept going back to the specialist after my laparoscopy because the pain had not really settled and was ruining my life still. Before my laparoscopy I was offered the Marina coil to stop my periods and try and help with my pain. This would be my turn out to be the fifth treatment I would accept to try and help me. Having had a bad experience in the past getting something taken out of my body (the implant in my arm) i was terrified of getting anything else placed inside me and then years later the dreaded removal. I was also not sure what was going to happen and be found during the procedure as every test for anything I'd ever had always came back negative, way way back to the first tests so I didn't have much hope and kind of thought I would go throughout life not knowing what was wrong with me. If you throw in a hand full of doctors saying it wasn't endometriosis compared to the couple that did think it was and I was now questioning myself wondering if they would really find anything. I wanted to know the results before I made any more decisions. I'd taken so many unwanted medicines and this one in particular was not as easy as just taking a pill. I'd be getting something inserted into my delicate cervix. So I panicked and said I'd decide that when I knew my results.

Looking back If I'd have know how much pain and discomfort it was going to cause me just going in, I'd have definitely got it in when I was getting my laparoscopy, asleep and blissfully unaware. Saying all that though, if I'd have known I was going to bleed long and heavy all of the time, have different cramps to experience, different flares and the additional pain the next day if I'd had sex, plus all my usual symptoms, then I most definitely would have told them to keep it away from me full stop! I'll be fair though the Marina coil did stop after dinner flares and flares when I passed gas as I am getting them more frequently since it was removed nearly 3 weeks ago.

The Marina coil is progesterone drug that is placed internally inside the cervix for upto 5 years. Someone woman do have to have it replaced every 3 years because it becomes inactive. It looks like the letter T and is made of plastic. It has cords on the bottom which sit outside the cervix and are used for it's removal. This is another treatment that is also used as a contraceptive but can be used for helping with endometriosis. The coil works in the same way as birth control and provera work in that it stops the body producing estrogen. There are reports of this being a great help to woman but I would not recommend this to anyone. When it was first fitted I bled constantly for months on end. I had a lot more really bad cramps and my mood was horrible. I was angry and emotional most of the time. Supposedly after the first 6 months have passed and the body is used to the coil then your periods should stop and life should be hunky dory. Mines never did and I bled more times that i didn't. I eventually got the coil removed and although my baseline pain and symptoms have more or less stayed the same, I'm not as moody, short tempered or emotional, my acne has gone away already, my hair looks healthier and I'm bleeding less. I used to worry that it had moved, gone missing and/or could pierce my cervix and since its removal I've not spared one second thinking about it so that's been good. The coil was the second worst treatment that I tried. I'm saving the worst till the end.

It didn't take me long to be making another appointment with my GP and specialist after the coil was fitted. I was bleeding very heavily, constantly sometimes having to change my pad every couple of hours on some occasions and the cramps were pretty much still causing me just as much problems. I wasn't able to leave the house for being in so much pain. After another appointment with the pain clinic it was suggested that I should try treatment number 6 pregabalin which is a anti-convulsant and also is in the same family as gabapentin. These types of drugs effect how our nerves send and receive pain signals and is more pain management than hormonal suppression. You are less likely to get any of the unwanted side effects that come with gabapentin if you take pregabalin. As I'd already explained to the docs I'd been feeling nauseous a lot because of the pain and because I have children i couldn't be drowsy and under the influence of drugs that might effect my mind state, it was suggested i should try pregabalin as there were less side effects.

I started on a low dose, given a prescription and off I went. I did my usual research and just noted that it might make me sleepy and groggy in the morning. It was basically going to work on my nerves and hopefully block the pain signals that would normally go to the different parts of my body. I also read that it was good for anxiety and since I had plenty of that I thought it might be beneficial there and as I'd always wanted to see if there was something to help with that I'd see if it did help and then tell the doctor. I felt pretty confident in trying this.

Once again they worked great at bed time because I was out like a light in no time at all. I slept all through the night, always. Waking up was a different story and I felt liked I'd been drinking for the last couple of days non stop, even though I'd made the decision to cut alcohol out for good because it just did more harm than good. It made my cramps continuous the next day and made me feel so ill. It wasn't worth it. Alcohol is not good for endometriosis and should be avoided.

I continued on with the pills and there was no change in the mornings and I still felt hungover for hours. After the 'morning sickness' had gone it was then time to wait for the flares to come and just try and get on with the day. Pregabalin didn't stop the pains but made them slightly duller and not so intense. It's so frustrating that most things go this way it's like the endometriosis is just to strong and always over powers what ever I'm putting against it. One thing that I noticed was that my anxiety levels were a lot lower than normal and I was having less panic attacks. Maybe the pills were also helping my anxiety so I kept an eye on things and just enjoyed being less worried all the time. I actually think they added to me having slightly less flares and pain during that time because I was a more relaxed and calm. Unfortunately it wasn't worth feeling like I'd drank 4 liters of rum every night so I eventually just stopped taking them. At this point my relationship with the specialist was becoming strained as anything they tried eventually failed and he was running out of things to try. I eventually managed to get in contact with someone in the department to make an appointment and tell them I'd stopped taking the tablets because of the way they made me feel.

Treatment number seven, the Decapeptyl Injection aka induced menopause and is similar to Lupron. This would be the last thing I'd try before I emigrated to Holland. I was offered this 7 months into getting the Marina coil as I was still complaining of pretty much the same pains so this was the last thing really to try. After almost coming to the end of my appointment with the specialist/pain management nurse that I'd arranged to discus how the coil was working, I kind of lost it a bit and said that I couldn't be left in this much pain and that It is so debilitating and I really needed help to try and stop get my life back on track. She went away to speak to another specialist and said I could wait and he would see me.

After a bit of waiting me and hubby shook hands with a new doctor and took a seat. He ran over my symptoms and the fact they still hadn't got any better even after various treatments and said he could give me a 6 month course of Decapeptyl injections that would put me through the menopause and suppress any endometriosis in my body. I was only 27 and had heard about the menopause but barely knew anything else about it. Without even knowing much more about it and because I was so desperate to try anything to stop the pains, I said yes. He wrote me out a prescription and told me to go and book and an appointment with my GP who would administer it. He didn't explain many of the short term or long term side effects, he didn't really go into much about what it would do to me or how it would effect my body. Just that it would stop me ovulating, I wouldn't have a period and wouldn't be able to get pregnant. He said that it would stop the endo and it would just fade away supposedly. If only I'd have done my research back then, I wouldn't have been so keen to jump in. I was pretty desperate though.

I left his room and was keen to get started after I'd done my usual research about what I was taking. Baaaaaad idea and even though I normally try and find actual facts and true evidence based research, in this case everything I read was just horror stories. I had scared myself stupid and no longer wanted to be dragged through the menopause. I put handing my prescription in to the chemist off for as long as I could but after I couldn't handle the pain anymore I gave in and was ready to try this after all. Fuck it, what did I have to loose now? The appointment was booked and after some confusion about who would be giving me the injection I had a date and it was going to happen.

On the actual day I was so nervous. More so because I knew my body was going to change so much and once It was in me, then even if it went totally horrible I'd have to live like this for the next month at least. I was aware of all of the changes my body would go through now and also aware of all the side effects. I was prepared for everything to come, or so I thought. The nurse called me into the room and after a bit of small talk I'm laid up on the bed with my tiny butt in the air ready to take on the menopause, palms sweating and my heart about to jump about of my chest. Wiggle my toes I said to myself.

The needle went in and the pain was intense. Holy shit! I screamed! That was sore!!! I'm sure she must have missed my muscle because boy did that hurt something rotten! Another downside to these types of treatments is the pain you have to go through sometimes just getting the procedures done. It's horrible having to experience a totally different kind of pain to stop the one you feel day in day out. It's so unfair. I cried out loud, sorted myself out and just wanted to go home. I instantly felt something different in my body like a strange feeling had passed through me and it was slightly warm. I left the surgery and started to walk home with so much on my mind. I'd love nothing more than some respite from my own body sometimes. I was going to get a little shock as the first week was absolute heaven. All my pain has ceased pretty much. It was so bizarre but just as equally amazing. I could even go to the toilet with no pains during and after. It was the best week ever.

Slowly the pains were coming back and by the end of the month my pains had pretty much returned. Everyone put that down to the injection wearing off so I was looking forward to my second one, although not looking forward to actually getting jagged with the needle again. I was unable to sit or lay on my right side for a couple of days after the jag, my butt ached. I also suffered really bad hot flashes and night sweets but they were worth the lessened pain I was experiencing. It wasn't a nice price to pay but I could move my bowels in peace and that was just amazing! My mood also changed and I was angry about everything. Everything irritated me and wound me up. I was a hot, angry, sore menopausal beast but my period had stopped which was a bonus! I did learn from this treatment that I experience a lot of pain extra when I'm ovulating and that's one thing the injections did eliminate and makes me think I need to stop ovulating on a permanent basis.

The second injection came and it didn't hurt at all which was strange. I made sure to ask for this nurse every time because she had a good way of finding the right muscle by feeling for it and didn't just use her eye. I experienced more hot flashes, night sweats and even more bad mood swings. I found that slightly more annoying than last month but the lessoned pain was still a lot better so I was willing to deal with the nasty side effects for now. I started to get a little stressed from the random hot flashes and night sweets over time though. I'd not slept properly in weeks and during the day I'd just randomly feel like I'd been set on fire no matter where I was or what I was doing. At 27 it was hard to deal with and no one my age could even relate. I felt like such an old lady, no offense if you're reading this and fall into this category. I don't mean it in a horrible way.

The pains came back quicker each month and it was like the injection was starting to ware off quicker. I continued getting them every month until the last one was due and at that point I'd had enough of the side effects. They were brutal. Life was so hard and the pain was coming back earlier and earlier and by month five i had one good week, 3 bad weeks and going to toilet was pretty much back normal. It didn't make sense, it was working at the start.

Aside from being all hot and angry I completely lost my sex drive, had bad acne, dizziness, migraines, my breasts decreased much to my dismay (I didn't think they could get any smaller they just vanished though!!), my hair thinned and my bones and joints were very sore by the end of the treatment. My shoulders hurt so bad! I still have sore hands, wrists and night sweats even though it's been months after treatment stopped. For me what I've learnt from this is this drug is just like poison and shouldn't be used at all to treat endometriosis. The side effects experienced are much worse than the original symptoms and some side effects are irreversible like bone density. Bone density is the most common serious side effect and unfortunately can not be reversed.

This treatment is not meant to be a long term solution and should be only used a max 12 doses per life time. Basically this drug works by stopping the body producing estrogen by blocking signals being sent to the pituitary gland in the brain. If you don't produce estrogen then you can't ovulate. It can be given in monthly, 3 monthly, daily injections or as a nasal spray but they all work the same. Other uses for this medicine include: prostate cancer as a chemotherapy drug, fibroids of the uterus and premature puberty in girls under 8. When using to help treat endometriosis 'add back medication' will be added in conjunction with the injections which will give you a little bit of a synthetic version of the missing suppressed hormones to balance the overwhelming side effects found with being catapulted into the menopause. In my particular case this made my symptoms so much more worse so I didn't last long taking those. Surprise surprise! My cramps were 24/7 whilst taking these pills and I seemed to cry a lot too, like all the time. As soon as I stopped taking them those particular issues eased up too.

Everything continued to not work as well as any of us had hoped for and I think if I'd had of stayed in Scotland then i would have been looking for a new specialist as there was nothing more this particular one could do for me I felt. Again I don't mean any disrespect to the doctor. I appreciate how hard he has worked to get where he is so I don't ever want to come across as if I'm dismissing the mountains of knowledge these doctors do have.

I've tried a lot of things after being recommended them by the GP, gynecologist and specialists. I've also tried a lot of things at home by myself. I've tried acupuncture. This was very relaxing but didn't stop the flares. I couldn't afford to keep doing this and since it only helped relax me and not cure me of my pain I couldn't justify spending the large amounts of money. I've also tried meditation and yoga. Again they are very good at relaxing my mind but don't stop the physical pains I feel. I've cut out caffeine, alcohol, processed foods and dairy. I'm still working on gluten but very rarely eat red meat. I have also tried omega 3 fish oils and found that if I stick to a strict diet, take vitamins and omega fish oils I can bring my pain levels down slightly. Again it's not enough to just say it actually helps and I'm cured but I do see a difference in the levels of pain felt if I go super healthy. When your miserable and depressed and bleeding constantly it's hard not to grab a chocolate muffin to drown your sorrows and by pass the salad. I also find that drawing is a great way to relax if I've had a bad day and found that I'm actually not too bad at it if I concentrate.

I've also just got into playing around with essential oils. Frankincense is one that I have read is good for endometriosis and also lavender. I've had fun making bath bombs recently and using them in my diffuser after I've had a flare to try and take my mind off things and relax me. It all makes dealing with the pain a little easier and keeps me occupied when I'm not in pain and able to do something crafty. I also found some CBD oil in my local chemist and tried that a few times. You put 3/4 drops under the tongue and it helps a range of ailments. I did noticed a difference when I first started taking it but I think I need a stronger dose and they get pretty pricey when you move up strengths. I only got this one as it was €14 but I don't think I can throw $80+ at it just yet. It's annoying because you kind of have to just buy it in order to see if it works. I'm still doing research on that though. I did find if I doubled the dose it would help more but I started to feel sick shortly after taking it so haven't touched it for a few weeks. I hate adding sickness on to the cramps.

I'm not quite sure what this new specialist will suggest after my MRI results come back. I'm not going to spend any time thinking about and all the possible outcomes as I have no idea what he will say because it's so different here. I might get lucky and offered surgery. Who knows? I've told him I don't want to try any more hormonal treatments and I think the best way forward is to have a second laparoscopy but until i have my MRI there's absolutely nothing I can really do but wait. I can't and don't want to do any of the treatments again that I've mention above because one way or another they just cause more harm than good so I'm hoping that's not something that's suggested. We will see in due course and I'm sure I'll fill you in on how that goes!

#endo #endometriosis #chronicillness #invisibleillness #treatment #cure #findacure #hope #pain #painmanagement #birthcontrol #pcos #periods #timeofthemonth #provera #marinacoil #menopause #hotflush #nightsweats #injection #monthly #cramps #pain #sore #cry #depressed #anxiety #mri #hosptial #journey #blog #mystory

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endowarrior877 · 8 years ago

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Endometriosis in the bowel.

Endometriosis can also be found in your bowel and bladder, although I'll be focusing more on the bowel since that's a big problem area for me. These types of endometriosis are the most commonly misdiagnosed. It's easy to see why as most of the symptoms are the same as many other bowel, bladder, gastric and reproductive conditions, so most people are diagnosed or considered to have these types of endo, after all other tests and treatments have came back negative. This more than likely will mean most woman will wait longer for a true diagnosis because they have to rule out various other things too.

Most woman will find that they will be diagnosed as having IBS or other bowel conditions and treated for that first. The difference between IBS and endometriosis in the bowel is that the symptoms can change as you go through your monthly menstrual cycle where as IBS usually stays the same all the time. IBS can also a symptom of endometriosis so it can be hard getting a proper diagnosis.

You may be prescribed laxatives and fiber supplements if your doctor thinks you have IBS. In some cases like mines, fiber gel and laxatives make my cramps a lot worse and the best way to help my bowels stay healthy and moving is by drinking loads of water and eating loads of fruit, vegetables and soluble fiber.

Typical symptoms of endometriosis in the bowel are:

* Constipation

* Diarrhea

* Pain when opening bowels

* Pain during sex

* Rectal pain

* Rectal bleeding

* Cramping in the abdomen

* Nausea and vomiting

* Difficulties in emptying the bowel or feeling like you are not completely empty

If endometriosis effects the small intestine or the ileum then pain might be felt on the right side and can sometimes be identical to acute appendicitis. Constipation is also common and something I struggle with. It doesn't matter what i do or what laxatives I take sometimes it can be days between each painful bowel movement. Some people won't have all the symptoms on the list and some will have all. I have experienced everything on the list and most of the symptoms are still on going to this day.

If you're concerned about any of these symptoms you should always speak to your doctor. To diagnose endometriosis in the bowel a laparoscopy and proctoscopy should be done. Tests may also be carried out to rule out bowel obstruction which I've had plenty of and they've always said I'm not impacted. To treat endometriosis in the bowels then it must be cut out from the root. If the endometriosis is deep infiltrating and has penetrated the bowel wall, in most cases a portion of the bowel will be removed.

So how does this effect me? I'm pretty sure my symptoms are due to having endometriosis in the bowel. Yesterday was a good day for me pain wise. It was grandpas last day with us and the plan was to go with him to the bus stop and see him off. I woke up and did my new, stay still for 15 mins until i felt the pain was okay and then I got up. I took some meds and got on with the rest of the morning. It was good, I didn't have to go through the usual morning brutality and it was looking like I would make it out after all. I wanted to see hubby's dad off. So I was in a pretty good mood. My bowels didn't open all day and I don't think they moved much to be honest but that was good because it meant less pain too! I'd deal with those consequences later.

I should have known that if I don't move my bowels the next day might be a bit iffy. I woke up, lay still and eventually got up and had some cramping so got a bath. I got out the bath and carried on with the day slowly hurting and then made me and teeny some lunch. I got the sharp shooting painful message telling me to go to the toilet so off I speed walked to the loo. The pains were creeping and intensifying and i sat down to do what I needed to do. The whole process of opening my bowels is just horrid and painful. Once the pain starts to come I know I need to quickly finish what I'm doing and go and lay on the bed, sofa or floor until it eases off, which is anyone guess as to when it will stop. I've been out shopping with the kids on a couple of occasions and this has happened and I've just had to lay on dirty disabled toilet floors clutching my tummy until the pain eases up enough to let us run to a taxi and get home to the bath. It's soul destroying when that happens. So I stay in doors where things like that can't and won't ever happen.

The one thing I want most is to be able to open my bowels without being in the worst imaginable pain. I wouldn't wish this pain on anyone, not even my worst enemy! I'm not so bad now but I went through a stage of being absolutely petrified with the thought of doing the toilet. Now I've accepted this is how it's going to be for the time being. I can't stop it so I've had to learn how to cope with it.

Today was no different and as I sat on the toilet, the sweat started dripping off my head and I was feeling like I was on fire, it feels like someone is twisting all of my insides into a tight knot and trying to focus on the task at hand is nearly impossible. All i want to do is stop the pain, anything to try and stop this god awful pain. I try to finish quickly and then I can go and get in the bath until the pain killers kick in again.

When I started to go to the GP about this I would always have my tummy examined and one thing that was always noted by a few different doctors, was that there were some protruding lumps on my left and right sides which they thought were always backed up stool. It was now suspected that I had a possible bowel obstruction and i was prescribed laxatives and stool softeners but even drinking 8 sachets a day didn't move the weird lumps. Even after my bowel prep for one of my colonoscopies I still had them, I never agreed that they were just backed up stool.

So currently I can only move my bowels when I get the sharp shooting pains and then I know it's go time. Gas doesn't just come out naturally anymore and i have to push that out which is sore and uncomfortable. Pretty much every time I move my bowels I have to take some form of pain killer and/or get a bath. If this happens when I'm out and about then I'm in a lot of trouble. No matter what I do with my diet it doesn't help. The only thing that does help is not going to the toilet and that isn't possible. This has effected my mental health so much because it is just sheer madness that anyone should have to suffer this much pain and discomfort when they trying to do something that is so natural to us all. One thing that is strange, is that during my period I have less pain when opening my bowels, and less mucus. I know that means something, I'm just not sure what.

This particular flare I'm having just now has lasted about 3 hours and was triggered when i opened my bowels. This will happen every time. I have an MRI scan next week and I can't speak to my specialist until the day after so all I can do is check in with the GP maybe, and wait until I can update the specialist. I was advised by my new GP to contact the specialist if my symptoms are persistent and very painful so tried to call the other day and I couldn't get a telephone/face to face appointment to my disappointment.

So now the flare has been tamed, I'll fix myself once again, take a deep breath and go wake teeny from her nap and give her a big cuddle. It's not too late so if we go to the shops shortly I can make something tasty for dinner. It's funny how you just dust yourself off and carry on with life as if nothing ever happened. It's horrible living in fear of my bowels and maybe one day I'll be able to go to the toilet like everyone else. Now that would be nice.

#endo #endometriosis #bowel #bowelendometriosis #misdiagnosed #chronicillness #blog #awareness #fight #pain #painful #toilet #number2 #bath #meds #disease #illness #warrior #endowarrior #findacure #hope #sore #tired #cramp #cramps #uterus #woman #girltalk #mentalhealth #raiseawareness #flare #test

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endowarrior877 · 8 years ago

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Introducing me and my Endometriosis.

Greetings! I'm going to spend a little time today telling you a bit about me. This is the second attempt at writing this after I didn't like the first copy so I scrapped it and started again, hopefully I can get off to a better start this time. After I read this back I thought some readers might find some parts upsetting and hard to read. This isn't an overly happy story. I do apologize as always if I upset or offend any more. It's never my intention.

So my name is Charlie and I'm 28 years old. I was born in Bradford, England but I've lived in Scotland most of my life until moving to Holland, 6 months ago. I'm the eldest of 5 and have 2 younger sisters and two even younger brothers. I didn't have the childhood I would have liked and after the abuse from my mother took its toll I ran away at the young age of 15 and never really looked back. It was the hardest but best decision I've ever made. I had no idea how to handle life but it was better than the mental and physical abuse I suffered at home. I haven't had contact with my mum for at least 6 years now and I'm totally happy with that.

The one person I am most closest to is my dear gran, my mums mum. I love her to pieces and I miss that I'm not close enough to go round and help her with things and just spend time with her. We speak on the phone regularly but I normally leave each call sad because she is old and alone and I can't be there for her. She isn't well with a number of health issues so in an ideal world I would take care of her but that isn't possible. She's understanding about my disease and gets upset when I tell her I'm in pain. I try to not tell her what's really going on back here because she will worry and I don't want that for her.

I started my period when I was 13. Right from the first one Ive always experienced really painful cramping and heavy bleeding. This would be the start of things to come. I didn't look forward to that time of the month. I continued on with life having super heavy killer periods that seemed to last for well over a week and a half sometimes. On occasions the cramps, sickness and bowel issues would be so bad I would have to miss school, college and social events. I never really went to the doctors as I just thought this was typical of being a woman plus it only really happened around my period and then I'd be okay. Using over the counter medication, the bath or hot water bottle I'd manage my pain at home and get through my period and things would go back to normal for a bit.

I fell pregnant at 18 and I suffered badly with hyperemisis which is when you experience sickness all day, unable to keep food and fluids down and you loose 5%+ of your body weight. I lost a lot of weight and was continually sick for all of my pregnancy. I was admitted into hospital for days having to get IV drips and anti sickness meds on a few occasions. I also suffered extremely bad cramps, it was a pretty miserable time, but me and hubby stayed positive and made it through a natural delivery which only lasted 4 hours.

The cramps I felt back then are the same as what I feel now on a daily basis. It is the same pain. I know endometriosis is meant to go away when you're pregnant but it didn't for me. I am one of the small number of people where it doesn't get better. I still didn't know what endometriosis even was at the time or that something was wrong with me so wasn't able to recognize the pain like I can now.

During my first pregnancy I would also notice the first, still here to this day, bowel symptoms. My apologies because it's kinda gross but, well I noticed my stools were covered in mucus. And loads of it too, sometimes that's all I'd pass. I know so gross. I'm sorry!! This can also be a symptom of IBS and this has always been put down to this, though after doing lots of research I don't agree that it's IBS causing it. I do however believe it is to do with me having endometriosis in my bowel. My bowel movements also changed and I wasn't digesting food which creeped me out! It was going in whole and coming out the same way. What the hell?!! Still I didn't really have any pain that overly concerned me but i was worried about passing big balls of mucus. That didn't sound too healthy.

I've always followed a relatively good diet for a while now and I cook most things from scratch. I also love baking and my favorite thing to make, pies! When I noticed the change in my bowels I tweaked my diet again to make it a bit more healthier. I was still noticing the same things happening and would think about it constantly spending countless hours worrying, thinking about what was causing this. It freaked me out and I didn't feel normal. In fact I felt like a freak. When my eldest was about 3 I started getting my first signs of pain when I opened my bowels. It actually felt like I'd gone in to labour. I started sweating loads, it was dripping of my head. What was happening? The pain didn't last any longer than 5 mins, then I was completely fine. A little shaken up but okay.

This happened just before my period. It happened again the following month but lasting a bit longer. The pain was intense. I couldn't understand what could be causing it. I wasn't constipated in fact more the opposite so it couldn't have been that. It kept happening and getting worse and would last longer each time. On one occasion i ran a bath and got in to see if that could ease the pain as it had lasted about 20mins. I got in and the pain gradually settled. I would now run a bath at the same time as moving my bowels and then jump in the bath of the pain was at a crazy level uncontrollable level. This had a massive impact on everyday life because if that happened anywhere but home I was screwed. I also had to drop everything because i had to deal with my pain before I did anything else.

When it started happening at least once a week I went to my GP. I still remember the meeting and I can remember what I told her. I explained that when I opened my bowels I would experience the most excruciating period cramps. I didn't know what I was describing but I'd accurately explained my symptoms which are the same endometriosis in the bowels. Of course not thinking it was anything sinister it was suggested that this was probably irritable bowel syndrome. She talked to me about IBS, gave me some leaflets said to change a few things in my diet. I went away feeling hopeful and read everything.

I would spend the next 6 years back and forth complaining of the same thing being told I had various bowel problems. I tried every bowel/stomach medication because it was thought I had at one point chrons disease, a range of food intolerances, trapped wind, bowel obstruction, perforated bowel, constipation, colitis, IBS, reflux acid, tummy spasms, bowel spasms and IBD. All while the amount of mucus I'm seeing is getting worse and no one can tell me why and the pain is increasing at a crazy rate taking over my life.

At the time my bowel movements were building up to their worst I had the pleasure of having 2 rectal exams to see if they could find anything from with my bowels after no meds worked. Nothing was found for the first one, but the second would find a tiny lump which concerned my doctor. He arranged a sigmoidoscopy have it checked. A few weeks later I found out I was pregnant and the little lump the GP felt was actually my cervix and not a potential cancerous lump. I was over the moon, I'd wanted baby #2 for a while now and the lump was just the makings of teeny so it was brilliant news. It was decided that I would still have the sigmoidoscopy so that went ahead put would only be done on a smaller section of my bowel. He found that I had a torturous colon, slight inflammation and internal hemorrhoids. Other than that there was nothing there. The mystery went unsolved.

Even though it was a really amazing time that I was pregnant and I was buzzing for the 3 of us to be 4, it kind of came at a bad time in terms of my chronic illness because all my symptoms were instantly dismissed as pregnancy symptoms. I vomited around 70+ times a day, every day. My weight at the start of that pregnancy was at 8.5 stone and then dropped to 5.5 stone at around 6.5 months pregnant. I felt sick 24/7 and was in the worst imaginable pain just as much. There were even talks of a feeding tube being introduced because I couldn't keep anything down. I was tested for so many things as my obstetrics specialist didn't believe it was hyperemisis causing all of this alone and made other investigations and she wasn't completely wrong, she just had her own thoughts about what was wrong with me. Some tests included looking for stomach bugs and various viruses and chrons but everything came back negative. No one could fix me or that's how it felt.

Towards the end of my pregnancy I was put on a high dose of steroids because it was suggested again that I had chrons disease. They didn't originally want to do this as I was pregnant at the time but I was so ill the docs were trying anything and everything now. They didn't help. The dose increased again and again. Another upsetting failure. Why didn't anything work? I was pregnant and I was on a lot of medication to try and help with my sickness and pain but everything failed. There was a possibility the meds i was taking would have an effect of teeny so I hated myself for having to take all these chemicals. I hated life and was very depressed and withdrawn at times. I was so sick it literally nearly killed me and teeny. She was born at 7 months by emergency c section. She spent a further 6 weeks in hospital before we finally got to take her home and enjoy her. She is perfectly healthy and although took a few days to adjust to her new surroundings after that she just flourished. I am a very proud mammy to both girls.

When I was pregnant I was also misdiagnosed as being anorexic and crazy. I was informed about the possibility of me just being 'crazy' but I had no idea about being diagnosed with anorexia. I wasn't any of those things just a very sick woman who was in a lot of pain, trying to grow a human inside, emotionally distraught from all of the pain and sicknesses. This is something that will always hurt. I thought after teeny was here the pains would go just like the sickness but that didn't happen. The pain stayed and got increasingly worse. Thankfully the sickness was gone shortly after she was delivered.

The bath was the only thing that really helped ease my pain when it was really bad, I'd sit there until the pain stopped. I'd asked so many times for pain relief but always been refused. I didn't really care what I was given I just wanted the pain to stop. I think the fact some doctors thought that this was in my head made them feel very reluctant to give me anything. And you know as frustrating as it is there were just doing their job. I suffered as a consequence but it wasn't their actual intention. I did however try nerve blocking meds, anti acid meds, anti reflux meds, meds to help digestion, laxatives, anti bowel spasm med, meds to help if it really was my mind conjuring the pain up and various hormones. None of which really helped. Getting no further with the docs and pain relief, I had no choice but to use the bath to stop my flares. That eventually turned into my literally living in a constantly running hot bath and boy does that cost a lot of money. It wasn't ideal and living in the bath and being a mother of 2 is impossible to do within the confines of a bath. I couldn't do anything because I was stuck in the darn hot bath. It's also wrecked my back as a result.

We even spent one Christmas opening presents in the bathroom because I was in too much pain and I had to get a bath for most of the morning. I didn't want to keep the eldest waiting any longer so we did Christmas morning from the bathroom. Everyone was happy apart from me. But even though we were all piled in a small bathroom, we were all together so that's all that mattered.

The doctors that didn't think it was all in my head still thought it could still be a bowel problem, although I wasn't sure now because all tests came back negative and all the meds they tried had failed. I was offered a colonoscopy to test for chrons this time. The test came back negative and I was heart broken. What the hell was wrong with me? Why was I experiencing so much intense cramping now on and off my period and more so when I opened my bowels? Why was I passing huge balls of mucus that felt like I was going into labour over and over again? What was it if it's wasn't chrons? Was it maybe in my head after all? Was I going crazy? All these questions played on my head every minute of the day.

Life continued and I was in the bath one day after a flare doing some more research into Chrons disease. I knew the disease inside out but I didn't have all the symptoms listed and also had some that weren't mentioned. This always concerned me. I was reading a forum and someone had commented about being misdiagnosed with Chrons. They actually had endometriosis. I was curious and typed it in google and started to read about it. Holy cow! There were ALL my symptoms. Not one was missing either way. It was so weird, could this be what was wrong? I showed this to hubby and he thought it sounded promising. I went to speak to my GP about it. It was a locum doctor who I didn't know and who didn't know me. I was so nervous going into the appointment.

The appointment actually went okay and I was put on some more birth control to see it this helped my symptoms. She didn't say I had it but didn't say I didn't. I was to try these pills and if the pain went away then bingo it was endometriosis. I'd taken them in the past so didn't need much info about them and went on my way. It didn't really take much of the pain away but stopped my periods which was nice. I didn't like the side effects and suffered bad migraines. I went back and saw another doctor who told me that I'd been given wrong medication that didn't treat endometriosis and to try Provera. I let my body get used to another new drug. This was okay, it helped a little and eased my symptoms. Bowel moments were still hell though and I was still cramping in between but it was not as painful and i was getting less baths. After a few weeks I started to get terrible sore legs and it was sore to walk. I thought it was to do with the new meds and was told I could take half the dose if I was experiencing unwanted side effects. I did just that but that made the cramps worse and my legs were still sore. I went back to see the GP. They must have been so sick of me. I was sick of going up there at least once a week.

I'd been back and forth so many times that I was eventually referred to the gyne team at my local hospital. They knew me from my last pregnancy and didn't think I had endometriosis. In fact the doctor i saw made it very clear that because I had a c section not that long ago they would have found any endometriosis at the time and because nothing was found it meant nothing was there. She also said that even if I had a laparoscopy and it came back positive for endometriosis, the treatment would be the same so to just go ahead and start that now. It's seemed a little conflicting but she put me on a course of amitriptyline. I didn't enjoy that and was so tired all the time and still suffered just as much pain. After increasing the doses as per instructed by the gyne doc I stopped taking them because I was turning into zombie and they weren't doing anything for my pain.

A previous MRI I had done on my bowels to check for bowel issues was pulled up and looked at for endometriosis, but she couldn't see any endometriosis on it. I still persisted that my pains were so bad I was unable to do normal daily tasks and it had got to the point hubby had to leave work to take care of me and the kids. She referred me to an endometriosis specialist which was good because I was getting somewhere.

My appointment came around for the specialist and for the first time I felt listened to and he said I probably did have endometriosis but surgery would be the only way to confirm. It was so nice to just have a proper, no shit conversation with him. I liked him. There were a few things to discus but one thing that was mentioned was that I'd be booked in for a laparoscopic procedure to see if I did in actual fact have endometriosis. This would be done 12 weeks from that appointment so it felt like things were moving fast which was great because i needed answers to find solutions. If I'm being honest I think I was offered the lap so fast because of all the complaining and trips to the GP. I was relentless because I was experiencing so much pain. I'd lost so much weight from not being able to eat and being sick and my mental health was not great as a result of everything. I'd spent 6 years thinking I had something wrong with my bowels when all along it was something that I didn't even I know about. I'd been labeled crazy and even questioned my own mind at times so I wanted to know answers so pushed for them. I was happy I was going to surgery but wasn't sure what was going to happen.

The date for my laparoscopy came around and I had my pre op just before and it couldn't come quick enough, the pain was mind blowing. It ate away all my happiness and positivity. I hated the world and everyone because they were okay and i lived in the bath going from one pain episode to the next, unable to have bowel movement because the pain was just excruciating.

Surgery day was here and away I went to be prepped. The procedure went well as far as I'm aware, although I'll know more when I have my medical notes from Scotland. They found endometriosis and to my knowledge excised some of it away and left some they couldn't get including some on one of my kidneys because it was too risky for them to remove it. I came around from surgery pretty groggy but eager to know if they found anything. The surgeon came round and spoke to me. I was pretty emotional that I finally knew a few things; I wasn't going crazy first and foremost, the pain wasn't in my head! And that I now had a name for what was wrong meaning I could find a treatment and it definitely wasn't a bowel disease causing all the pain. The conversation with the surgeon was hard and emotional. He basically said "I had to take each day as it comes" and basically stop making a fuss, I was discharged with some dihydrocodeine and instructions to see the specialist for a follow up appointment. I was told things should slowly go back to normal after surgery but after I healed the pain slowly came back, but worse. It was noted on my discharge letter that there was no cause for bowel pain which was very upsetting because that's really what led me to this point. That was one of the main problems. 36 hours was my longest continuous pain episode. I didn't eat or sleep during that time. I couldn't and it nearly broke me.

I continued to complain about the same issues and after my laparoscopy. The GP arranged a second colonoscopy where they would find the same things as they found in the sigmoidoscopy and first colonoscopy but this time a strange red patch that wasn't related back to any bowel problems/disorders but was noted down as a possible cause of pain. This is what I think is the deep infiltrating endometriosis that is stopping me from having any normal bowel movements and causing all the debilitating excruciating pain. The doctor doing the procedure also said my bowels were healthy apart from the red patch which she couldn't identify. Another blow because there wasn't anything to be found in my bowels to explain all the pain i suffered.

I also had several MRIs in between to see if there is endo in the bowels or pelvic area but they always come back negative oh and ive had a negative ultra sound. I'm not really surprised as it hard to pick endometriosis up on either. It can and has been done but really the gold standard way for diagnosing endometriosis is be a laparoscopic procedure. There are fellow sisters out there who have been lucky enough to be diagnosed that way. Chocolate cysts normally show on those types of scans.

Following my lap I also opted in for the coil although that was a big mistake and it didn't do anything but make me bleed constantly and be a angry hormonal mess. Whilst on the marina coil I also had monthly injection to give me the menopause. Another horrific experience to go through at 27 years old. Night sweats and hot flashes are the worst. All this in a desperate bid to tame my endometriosis symptoms although nothing ever really helped.

At the moment I'm waiting for another MRI from the new Dutch specialist due in a week and then hopefully i will be referred to the super surgeon after this comes back negative and there's nothing more this gyne can do. I need a doctor that specializes in endometriosis and that meant to cause no offense to the standard gynecologist that works in the local hospital. I need a doctor that is well trained especially with endo located in the bowel, bladder and kidney.

I am still trying to put my case forward for getting surgery again instead of hormonal suppression treatment which doesn't really work in my opinion especially In terms of my endo. If they can take away all the endo that's left and any that's grown since my first lap, I really believe I wouldn't need pain killers either so it's just a win win situation to me. The problem is no one really wants to just open the human body up because their patient thinks it's the best course of action. I'm unable to work and socialize, be intimate and live chained to the house going from pain flare to pain flare. I'm exhausted and have mood swings depending on my pain levels too. I still to this day am unable to have a bowel movement without being in some extreme pain and still have loads of mucus and undigested food and remain unable to put weight on.

If I follow a strict pain killers routine 3/4 times a day I can really minimize the flares and daily pain but that means I'm on high doses of strong meds throughout the whole day and it's hard to function sometimes. So I try and take it only when the pain crescendos up and doesn't go away after after a certain amount of time. That normally means I suffer more times than I need but I don't want to be dependent on the meds so I do really only try and take it when the pain is at it's worst. I now use a combination of the bath, hot water bottle and pain relief to try and help the pain and when I can't manage it at home I pay the ER a visit. I don't have enough fingers to count how many times that's happened over the last 4 years.

I never thought life would turn out like this. When I do get better there's a lot of things I need to deal with as well as just getting rid of the endo. My mind has changed, my body has changed and now bears horrible scars of deeply painful times, even things like my diet has had to change. I'm under weight, my bones hurt and hair is falling out. I don't and can't drink alcohol anymore because it effects my body so badly. Alcohol produces estrogen which is no good for endo. I'm definitely not the same person I was 5-7 years ago.

Endometriosis is all I ever think about, feel and experience. I feel pain that much that on the very rare days I wake up with no pain I spend it being so angry because Ive cancelled something previously and I could have gone in the end. The pain killers only mask the pain. They don't solve, fix or cure it and it never will. My disease is progressive and throwing painkillers at it will only ever work for so long.

So that's a little bit about me and my history with endometriosis. There's is still a long long way to go but if I stay strong then I can do this, I think. I'm going to try because that's all I can do. If I give up I can't be there for my kids and hubby and they mean so much to me. Endometriosis is a life long condition, I understand I may suffer pain throughout my life but not to this extent. I hope things can get better. This is the hardest thing I've ever gone through In my life and and it's not over yet.

Thanks for reading.

#endo #endometriosis #endowarrior #chronicillness #invisibleillness #periods #drama #family #introduction #sharingmystory #birthcontrol #provera #marinacoil #cramps #sickness #pregnant #csection #hospital #medication #pills #depressed #anxiety #hope #fight #strong #fear #strenght

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endowarrior877 · 8 years ago

Text

When Aunt flow outstays her welcome.

Ok I'm going to write this and then think of a title for it after, I seriously can’t think of one just now, so I’ll see where I go with this and hopefully be able to think of something after. A wee warning this post might not be for everyone so if you don’t like talk of periods, it’s probably wise you don’t read on.

It’s no secret that it's pretty normal for a woman to bleed every month, it’s called your period. My periods have always been very heavy, irregular and painful for as long as I can remember. They could last anywhere up to 7-15+ days. I've tried various types birth control in the past to try and help with the heavy bleeding but nothing worked. After I got the Marina coil fitted last year to help with my endo symptoms I have pretty much bled non stop apart from when I was riding the hot, angry, menopause wave.

After I stopped getting the monthly injections to give me the menopause (another treatment to help with endometriosis) in may this year, I got my periods back. As things returned to normal I was getting really long periods again and spent most of the time since then bleeding or spotting. My latest on going period episode started over 45 days ago. It stopped briefly last week but not before really giving me a really bad few days that landed me at the out of hours doctor on Sunday. I was pad free for about 4 days but two nights it came back with a vengeance. I'll just take a moment to say how unflattering pads are! I'm sick of seeing them now.

It’s not normal to bleed this long. No matter what anyone tells you, don’t listen, it’s not. Ive been told a few times that it's okay to bleed for months on end. It's so not! I went to the GP 2 weeks ago to let them know I was concerned about it lasting so long again and that I was fed up of being a constant leaky mess. He was actually pretty understanding and I was offered some narproxin which should stop the bleeding but kindly declined. I’m kind of done with filling my body with potential harmful chemicals for what ever reason, dealing with unwanted short and long term side effects some irreversible. I thought I may be able to find a more natural way of helping.

I went home after that appointment and spent some time looking at things I could do myself in the comfort of my own home. Here’s some things I found, I'll also put some links at the bottom for reference. Some of these I haven't tried yet but if they are in this list I plan on trying or have tried. I will do a separate post about my results. Remember as well, non of these should ever be used as a replacement for any medical advice and should not replace your usual medicine or advice given from trained medical professionals. Speak to your doctor if you have any concerns as sometimes even friendly herbs can interact with certain medications so as always be careful if you decide to try any. So here's some at home, natural ideas you can try if your bleeding is very heavy, some also help with cramps so it's a double win.

1. Cold compress or ice pack on your abdomen - Although it may feel chilly doing this, it is good because it causes vasoconstriction. That basically means it constricts your blood vessels and slows the bleeding down.

2. Hawthorn flowers - Drink as a warm tea, to help relieve heavy bleeding, blood clots and cramps.

3. Fenugreek - A great natural home remedy that can be found in most supermarkets. Soak a handful of seeds and soak in 1/4 cup of warm water. Consume the water and the seeds for 3 days before and during the period and it should make them lighter and shorter.

4. Lady's Mantle - You can drink this as a tea. It helps with muscle and blood vessel tightening and can help with blood clots. Mix 1 ounce of tea with 1 pint of water. Drink tea three times a day. You can find this online or at your local health store.

5. Shepherds purse - Can be found at the local health store. This is great for heavy bleeding and also postpartum bleeding.

6. Thyme tea - By drinking this regularly it can help ease heavy bleeding.

7. Basil - Whilst basil helps with heavy bleeding it is also great for relieving pain caused by bleeding due to caffeic acid known to reduce pain. Use in either a tea by soaking the leaves and drinking tea or using the leafs in cooking. You could go all the way and do both!

8. Aloe Vera - I personally love aloe Vera and I have a plant in the house so this I may try first. As well as being able to help with other ailments it can also help with heavy bleeding. By drinking the aloe Vera gel or the juice you can get all the great benefits of aloe Vera.

9. Eat iron-rich food - By eating dark green vegetables, red meat, pumpkin seeds, raisins and even an iron supplement you can increase the iron in your body and this should help with the bleeding.

10. Cinnamon - This is another one that id like to try because I love cinnamon. This is particularly good for endometriosis, uterine fibroids and adenomyosis and calming down heavy bleeding. Cinnamon is also an know for being anti-inflammatory and antispasmodic so it can help in the pain department too. Drink as a tea or a tincture.

11. Magnesium - I actually think I could do with some additional magnesium for other reasons so was happy to see this in the list. Magnesium is important for woman and balancing hormones such as progesterone and estrogen. As heavy bleeding may be caused by a magnesium deficiency it may be worth a try adding some of these magnesium rich foods like; nuts, seeds, avocado, squash, pumpkin and watermelon. You can pick a supplement up at the health shop too.

12. Chamomile Tea - This is another good way of dealing with heavy bleeding. It's tastes good too. Drink regularly. You could even combine with other herbs like cinnamon for greater results.

These are just 12 different ways I've found that may well help with heavy bleeding and pain. There are loads more so please be sure to do your own research and find something that works for you. If you've tried any of these or anything not mentioned please feel free to share how you've found them.

I am out at my local herb shop on Monday so I'll see what is available there. I've got a few of these things in the cupboard already though so that's a start. It's a lot harder to find new herbs in a local shop because of the language barrier. I could buy them online but it's nice to get out and do actual shopping and see real people. My Dutch isn't great but i do try but it's a bit of challenge sometimes, so I'll see how I get on. I'm hopping that by using a combination of some of the above suggestions, I can help myself and in a more natural healthier way. It would be really nice not have to resort to taking any more pills but I'll have to check in again with the old doctor if it continues past the end of this week and remains this heavy. I'll also do another post in a week or so and let you know what methods I tried and liked. I think it will be around that time before i can really give my opinion on how they are working.

When you're constantly bleeding and heavily for long periods of time, it can become exhausting. I've been feeling like I'm burnt out faster the last few weeks and I think that is because I'm drained from bleeding so much. Trying to eat more iron rich foods can be quite helpful. This is something I've tried to include for a while now and try to have at least cabbage, sprouts, spinach or broccoli with my meals. Red meats are good for being rich in iron but unless is organic red meat is avoid that too and just stick to the veggies. It's also important to try and keep active where you can and get plenty of rest. It's also more than okay to nap especially if you have a chronic illness and you're having a bad time with it. In terms of keeping active, house work and walking to the shops all counts as exercise. Hovering the whole house is a mini work out for me sometimes!

Thanks for reading, if you're going through something similar I'm here for ya and feel your pain. Know that you've got this and you're stronger than you think! Surely anyone woman that can survive bleeding this long is some kind of indestructible superwoman, right? Maybe if I keep telling myself I'll start to think that. Ha!

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http://vkool.com/home-remedies-for-heavy-menstrual-bleeding/4/

http://home-cure.net/best-home-remedies-to-stop-heavy-periods-menstrual-bleeding/

http://www.top10homeremedies.com/home-remedies/home-remedies-heavy-menstrual-bleeding.html

https://www.drugs.com/npp/lady-s-mantle.html

https://www.herbal-supplement-resource.com/shepherds-purse.html

http://natural-fertility-info.com/cinnamon-benefits-pcos-endometriosis-uterine-fibroids-menorrhagia.html

http://www.cycleharmony.com/remedies/period-symptoms/a-simple-tea-to-promote-a-smooth-menstrual-flow-and-relieve-period-pain

#periods #timeofthemonth #williteverstop #girltalk #letstalk #endo #endometriosis #natural #normal #cinnamon #shepherdspurse #superwoman #herbs #try #results #iron #healthy #healthybody #healthywoman #active #keepfit #eathealthy #heavyflow #athome #diy

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