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Why do we have to suffer

Category: Adenomyosis, Impact on Quality of Life, Multiple Surgeries, Other, and Public Health.

Endometriosis month is March !! My name is Ali I’m 35 and I suffer with endometriosis. I am 1in10! It’s a condition where the tissue similar to the lining of the uterus grows where it shouldn’t and causes pain, bleeding and infertility. Along with other crippling symptoms! The average diagnosis time is 7years, it’s wrong let’s change this!! For me it took 14yrs to get diagnosed, shoved pain meds and told so many different things. I was drug seeking, I was crazy! Well let me tell you, IM NOT, AND NEITHER ARE YOU! I was told to lose weight for many reasons, one being it would also help with my so called pain! So I lost half my weight and it made it worse! I was finally sent to see a gynaecologist who mentioned it maybe endometriosis, this was 2016, I had only maybe heard the word but never knew what this was. she tried the mirena and some pain meds to see if it settled my pain and bleeding, but it got worse again, the mirena caused me to bleed non stop for weeks with massive pain, and it moved and fell out, so next step was laparoscopic surgery as this is the only way 💯 percent to diagnose the condition, and was diagnosed with stage 2 endometriosis in 2017, the were suppose to remove it at the same time. After surgery I felt a little better but not like I expected at this time the tried a second mirena, and this one also moved so I choose to have it removed and so went back and they discussed putting me on zoladex an injection in which I went into menopause as you will! This was probably the best I’d felt in ages on this injection, but could only do the injections for 6months, it wasn’t a long term solution. so I went and Had a total hysterectomy in April 2018! The results came back for that and i was told I had adenomyosis as well, a tumour on my tube, and that endometriosis was back in my cervix and one of my ovaries stuck to the uterus wall! So they took everything but my ovaries. Since this surgey im now suffering worsen bowel issues worse than before, it’s been blocked 4x in a Matter Of months and I simply can’t go to the toilet, I cry and hold on to the handle, sometimes being crippled to the floor. and just getting fobbed off by hospitals and declined by the gastrointestinal team, it’s now at the point where I cannot eat without pain, bloating and nausea, doesn’t Matter what I eat or how much. 😰they diagnosed me with serrated polyposis syndrome as well. I just had 15 polyups taken out and sent away – a lot of people say hysterectomy will fix it all, adenomyosis it may yes, but endometriosis has no cure! I’m now fighting to get more answers to why my bowels have packed up worse than ever before, they do think my endometriosis is back, which means more surgery. but I was never told it was on the bowel so a little unsure here. so will keep pushing till I get answers. No one deserves to live a life in pain, I’ve lost my job and struggle todo the simple of tasks on a daily basis. Life for me is hell, most days but still try and think positive and do what I can .

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