Endo back after hysterctomy ?!? :(

[Mistiek]

I'm gutted.... I can't believe I'm posting this only 9 months after my Hysterctomy. I was diagnosed with endo in 2013 1st on my left ovary.... In 2014 the pain started to get bad and endo was found on my uterasacral ligaments and I was diagnosed with adenomyosis. I had a total hysterectomy and left oophorectomy... right ovary was left intact. It was the best decision I had made... no more painful heavy periods and all my pain was gone.

Problem is when they took the endo off the ligaments they burnt it away not excersised it... In July I started getting pain. .. but it was periodic and thought it was my ovaries cycle. The pain is now daily and sometimes constant and some days I'm back to being stuck on the sofa with hot water bottles. I'm quickly getting very down again and totally fed up. Too scared to go to the doctors as I thibk they will just think I'm lying and it's in my head... I don't know what to do it's so depressing

Anyone with some advice... anyone else gone through this? Help !!!

[Sweetyassi]

Hi,

Sorry you're still suffering with Endo. I had hystercretomy done a few years ago, I kept my ovaries. After a week of having my operation I was still in agony and my Endo was still came back. I've had numerous operations to remove Endo but it keeps coming back.

My last operation was a success, I had my op last year November and still recovering. I had to go private to have this op done. The surgeon told me that my insides were a mess, everything was stuck together Endo and adhesions everywhere. He took his time and removed every bit of Endo.

I was surprised that the NHS doctors couldn't see how messed up my insides were.

I hope you find some relief soon. Go back to your GP and tell him/her what you're feeling inside. Never think it's all in your head and don't let them make you feel like it is.

Sweety

[Hidden]

I agree with "sweetyassi" - go back and explain what's been happening. I had both ovaries removed along with the hysterectomy in December 2004 and once I fully recovered I had a few years of absolutely no symptoms. Slowly though - around 2010 - the pain returned infrequently and low level at first but now I'm practically unable to walk without my rollator and in constant pain.

The disease is incurable even post-hysterectomy and it is possible your remaining ovary is producing sufficient amounts of oestrogen to feed the endo (although it can regenerate itself and produce it's own oestrogen).

Keep a diary/matrix of all your pain and symptoms and be assertive (though not aggressive) in your demands to have further investigative work done - preferably non-invasive to start with.

Maria

[xKatieLx in reply to Hidden]

Hi Maria, would you recommend hysterectomy or would you advise against given your subsequent problems? I am currently facing that decision x

[xKatieLx]

Do you still agree hysterectomy was the best thing you did? I'm curious as I am currently facing having to make that decision x

[Hidden]

I can't speak for anyone else; although I did want children, the need to investigate why I kept miscarrying and the apparently never-ending barrage of hormones, etc. I just decided - for me - a hysterectomy was necessary and I felt that since I had no womb, and given ovaries produce oestrogen to feed any endo, it was also better if I removed the ovaries. I don't regret it....not one bit. Although the symptoms have returned, I still feel it was the best decision (again for me) because I personally could not cope with the hormone fluctuations I had when I both ovulated and menstruated.

My regret is not sticking to the changes I had made once I fully recovered (and it took me around six months in total); I had changed my diet, exercised more and moved to another area of the country. All these things I think helped and I had - probably most importantly - reduced my stress levels by moving away from London and associated 'friends' and former colleagues.

Only you can know what is right for you - I will say this: I never had ANY doubts at all at the point I reached my decision even when the specialist wanted me to take more time to think about it (I had to see a psychiatrist to confirm I knew what I was doing and that it was truly what I wanted). It cost me around £6,000 in total (from start to finish as I paid privately).

Hope this helps....take your time and make sure the decision is YOURS alone.

Regards

Maria