#And whilst it's not debilitating there's nothing a doctor would realistically do

[kyogos]

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[endowarrior877]

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!

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