Frustrated

I have been suffering with endometriosis for 17 years since I was 22. I had never suffered with painful periods or pms since starting my periods at 12 so to start suffering it came as quite a shock.

It took them 6 years to diagnose the endometriosis and during that time they kept saying it was P.I.D. I even had my appendics removed as they thought that was the problem. Since being diagnosed in 2001 I have had 3 laporoscopies, laser treatment to remove the adhesions (grade 4). I have tried hormone tablets, prostap injections twice, different pills and the contraceptive injection and have tried accupuncture twice. I am now following the endometriosis diet to see if that can offer some help. I have always had it thrown in my face that because I haven't had children there is nothing that can be done for me, which I don't believe. I was in an abusive marriage so having children was not an option and now I live with a wonderful man who unfortunately made the decision not to have anymore children 12 years ago so he had a vasectomy.

I had the mirena coil fitted in the summer of last year 18 months after the laser surgery and my suffering continued. The coil came out on its own just before christmas and I suffered with a bad pelvic infection as well as the endometriosis. After completing my second course of prostap the pain come back almost immediately and I keep getting spotting on average twice a week but have not yet had a proper period.

Recently I collapsed in pain and was rushed into A&E where they thought I had a cyst that had ruptured. I had a pelvic scan & vaginal scan and they couldn't find my organs due to the endometriosis. I went through the pain of a hysteroscopy and everything was OK. I am now living on ibruprofen and co-codamol so my life is on hold. I can just about manage to go to work but other than that I have no life as I don't have the energy to do anything else.

I am due back at the hospital next week to see my consultant and am now pushing for a complete hysterectomy as I feel that this is the only way forward.

I will keep you all updated on how it goes with the consultant but would love to hear from anyone that has had a hysterectomy and if it has made any difference to there lives.

6 Replies

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  • Hi pinkpig (love the name)

    I can't believe the drs have said because you havent had children they cant do anything. I've had two children and my symptoms got worse after my second!! I havent had a hysterectomy but a friend of mine's mother had one at age 28 because her endo was heading towards her bowel and she has had no problems since. I have unfortunately heard of it not helping other people so it's a gamble really. Good luck with the consultant and let us know how it goes x

  • When I had the laser surgery they only did that because I was paying for accupuncture. They did remove adhesions from my bowel but luckily nothing was sticking together.

    I will return on the 26th after my visit to the consultant.

  • Hi Pink pig. I was the same as you. I had my total hysterectomy in April this year. I had endo, cysts, fibroids and adenomyosis (only found after hysto). I tried everything from tablets to the injections nothing worked, I was in so much pain, on morphine daily :(

    I pushed for a hysterectomy, unfortunately we were unable to have children. But as soon after the hysterectomy i felt so much better and still do. But its not the answer for everybody. Only you can decide, it does take a long recovery after the op. If you want to ask anything feel free. Sarah xxxxx

  • Thanks Sarah. How did you feel after the surgery? My gp and a Dr I saw at the hospital have both suggested a hysterectomy as being the only way forward. I have done my research but need to get my consultant on side now. Luckily I have a brilliant partner who is very supportive.x

  • I felt so much better after the op, my endo pain went totally. I wont say its not pain free after the op, but my after op pain was no worse than at my worse period pains, its a very slow healing process, but i dont regret having the op, just wish we could have had children. I have a fantastic husband who took really good care of me. xxxx

  • Thanks Sarah. I have really done my homework on this and talking to people like yourself has helped me in making my decision.

    I know that I am doing the right thing and like you only wished that I had children.

    Sue xxx

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