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endowarrior877 · 7 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.

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