hysterectomy (age 35) 12 years on and sti... - Endometriosis UK

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hysterectomy (age 35) 12 years on and still might have endo?


The last 2 years I have been suffering with low back pain, nerve pain in my groin and down my leg and problems with my bowel. I never thought that it could be endo and its taken this long to rule out anything mechanical with my back. I increased my dose of HRT (oestrogen only) about 2-3 years ago and wondering if this is connected? Has anyone else thought they were through it post hysterectomy to find it recurring. I am waiting to have a investigative lap' but feeling devistated that it could be the source of the pain. Desperate for other stories. I had about 16 ops in total from 25 to 35 and then further ops for pelvic venous congestion, I can't bear the thought of more surgery. I just don't know what to think.

6 Replies

Hi, sorry I don't have any answers for you but I wanted to reply, that amount of surgery must have been a nightmare. I have groin pain and pain down the leg that has been diagnosed as neuropathic pain, I also had to go through the back and hip things to rule them out. I think only the lap can give you answers, if it is nerve pain they will probably give you pregablin or amatryptaline, I trying the latter at the moment. Good luck xxx

Once again it could well be adhesions 'sticky' scar tissue post surgery reforming. The bodies response to any inflammation or trauma is to secrete a gluey substance around the problem area/s.

This can form spagetti like/spiders web like filmy adhesions which can pinch, pull and tug and nerve pain which can affect the low back, hip and down the leg to knee is often an accompanying factor which can cause further pain. Trouble is each surgery can just worsen the situation so Gps will often use things like Amytriptyline which helps nerve pain and helps sleep to address this.

Oh Susie, you have been through it

Only another lap will tell you for sure, and I sincerely hope otherwise for your sake, but I'd be surprised if the reappearance of the pain after you've increased your HRT is coincidental....

If it is back though the worst thing you can do is have more surgery. As Juleyanne said, surgery causes scar tissue to form, and endo thrives in/on scar tissue.

Have you voiced your concerns to your GP?

C xxx

Thank u all for yr thoughts. I felt so low I just had to get away this w/end and went to stay one night in a b&b and last night with a girlfriend. I can't bear my kids seeing me when I'm in pain and crying and feel at a loss. Doc wants me to try gabapentin for nerve pain but already on amitripytaline and heard side effects not nice. Any other advice re nerve pain.?I think I just need to have an invest lap just to know what is the cause, understanding what is going on inside even if I decide not to have any more surgery. Does that make sense to anyone? The nerve pain is so bad at night, like shooting pain that jerks me awake. I just want to be able to know what's happening inside

Hi I have been reading The emails that come through each day and my heart goes out to everyone's suffering. I have been so low that I couldn't even write but now I have an op this Monday and I am so scared a at having more surgery. I am seeing Mr Kent at royal Surrey and I get the impression that although another op will cause some adhesions that surgery has really moved on to minimise them and that it is definitely worth removing any existing adhesions. I am on gabapentin and amitryptaline for the nerve pain but it is still there. Has anyone had relief from the nerve pain post surgery and been able to come off these drugs? Also can Anyone share their surgery experience under Mr Kent, obviously Positive feedback as. I know of the rules on this site. I am scared that post surgery they are going to kick me out of hospital too early to vacate my bed as I get very sick with generals despite years of anti emetics and because of my constant joint pain it takes a while to get the pain under control. How can I tell the docs and nurses of this without soundin I'm being difficult and don't want to be discharged too quickly.

hi i too am suffering post hysterectomy. four years ago i had my hysterectomy and was fine but symptoms back with a vegence. im on progesterone only hrt at moment to be reveiwed in 3 months time then poss lap if not improved.

the pain and swelling with pain in legs and back are really getting me down.

painful going to toilet too.

like you devastated its back :(

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