Endometriosis UK
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Lots of pain and at a loss

Hello everyone, I'm going to try and keep this as short as possible. I was diagnosed a few years ago with endometriosis and I'm kinda at a loss. I have had 4 surgeries for it and large cysts. The first one was for a grapefruit size cyst in my right ovary and the next was to remove abdominal adhesions and thats also when they found the endometriosis. The next one I had was to remove my right ovary because of another very large cyst and endometriosis and the last one was strictly for the endometriosis. I've been on brith control and I haven't had a period in probably a year now but my pain is coming back and is starting to be very bad again. My doctor suggested a hysterectomy but given the fact that I'm only 22 (This all started when I was 19), I couldn't bring myself to go through that. Does anyone know anything for relieve or how to deal with it? Also, do you have to have periods for endometriosis to occur? Also, I am terrified with, my bad luck, that I might have an ectopic pregnancy but I haven't had any bleeding. I don't know too much about those so some insight would also be very helpful.

P.S. I have been cleared numerous times from a GI of any gastrointestinal issues that might've been the cause instead. Two colonoscopies, one endoscopy and all kinds of other tests and nothing. Just at a loss for what to do about this.

Thank you!!

1 Reply

Im sorry to hear that and i feel for you since I've had several operations/lap same like you. Maybe coz Ive been in this on and off battle against endo for 20 yrs..I learned that this is how it is and there is no 100% cure or gaurantee that it will not come back. Im 38y.o now and currently on Vissane after few shots of decapeptyl. Yes, endometriosis will come back if we have our normal period thats why we are on pills or Gnrh meds.Anyhow, my advice is that you find a good doctor who will help you manage your endometriosis well. Youre still young and your decision not to make hysterectomy is right, even this will not solve d issue..coz i had my hysterectomy done and still endo didnt stop. Luckily I was able to had my eggs frozen when I was 30y.i and was able to conceive thru i.v.f and now has a 6 y.o son prior to hysterectomy...Just like I said, your still young and if youre planning to have a family, hysterectomy is not a good option and its not d solution for our case.

Hope this helps and best of luck to your endo journey!


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