Has anyone had a hysterectomy but still suffering with Endometriosis afterwards?

[Sunflower1968]

Hi I just wanted to know if anyone has had a hysterectomy but still has endo symptoms afterwards?

Thank you

[bighug]

Hi, I think it depends on if your surgery was successful in removing all endo or if you still have your ovaries. I had a total hysterectomy in July last year, I had endo everywhere including my ovaries, but because I was 45 the decision to try keep them was made, so my surgeon removed the visible endo to keep as much healthy tissue as possible. Unfortunately 4 months later I was suffering again with endo pain and went back to see my surgeon, he prescribed the pill again (to help with the pain), plus paracetamol, and that I now need them removing. I hope this helps explain why you might still have pain, and hopefully feel better soon x

[Sunflower1968 in reply to bighug]

Hi thank you for your reply, I’ve not had the surgery yet it’s planned for next month but I keep reading that so many people still suffer after a full hysterectomy so I’m trying to way up the pros and cons if that makes sense?

[Christin_a]

Hello

I haven't personally but I know people who have had hysterectomys and still have endo symptoms. It's because endo can produce its own oestrogen so even by removing the ovaries this doesn't stop the growth. And as endo can be microscopic even if it's removed by excision at the time it does not mean the end of your symptoms. This is why it's not a cure. It does help some women massively and for some it doesn't return but not every is as lucky.

[Sunflower1968 in reply to Christin_a]

Thank you

[bighug in reply to Christin_a]

Hi, I’ve just seen your reply regarding endo pain after hysterectomy, is that true, it doesn’t always stop the growth, even after the ovaries are removed? I thought the ovaries were the feeders of endo. I’m worried now, I had a total hysterectomy last year but they left my ovaries, unfortunately the endo came back and I’m waiting for my op to have them removed, I don’t really want them removing as I will go straight into surgical menopause, now I’m confused, I thought I’d be pain free once they go ☹️

[Sunflower1968 in reply to bighug]

My gynea even said it could happen and after research on here and other sites you will find many women who are still suffering after a total hysterectomy but there are many women who are not. I’m sure it depends on if all of the Endometriosis is removed which if like myself it is in multiple areas/organs that can be difficult but from all I have been reading it can depend on the experience of the surgeon with Endometriosis. I just feel a hysterectomy is a major surgery and I want to be sure if I have Endometriosis in my bowel then I should have a surgeon who is experienced with Endometriosis. I had surgery in 2014 which did not help my condition so I do not want to repeat this with my next procedure. There are risks with any surgery so I want to try and have minimal procedures as it was so disappointing to go through the recovery and still have the monthly debilitating pain and bleeding. Thank you x

[Christin_a in reply to bighug]

Hello yes it is true of it always stopped endo growth it would be considered a cure. But endo has no cure. Ovaries are the main feeder of growth but not the only one. Endo itself can produce its own hormones, plus things like HRT treatments can add to it. Unfortunately microscopic endo can be left even by a skilled excision specialist as they can only remove what they see.

This doesn't mean you won't be pain free but you need to be realistic in that it won't necessarily mean that.

[Sunflower1968 in reply to Christin_a]

Thank you for your message and I totally agree.

[slaccie98]

I had a hysterectomy 9 weeks ago by an endo specialist (hes in a bscg clinic). I have endo on the bowel as well. I had most of my pain with my periods. I was on livial and prostap for a year and then we discussed my options. We both decided on a hysterectomy as it worked so well. He warned me at that time that even if he removes all the visible endo microscopic cells of the endo could remain and flare up in the future. Unfortunately he could not remove the endo from the bowel as it was too close to having a resection/bag. This I dont mind as much and I'm under review to see how i go.

Only downside for me now is that the HRT he prescribed is now out of stock like quite a few are short of stock or out of stock.

[Sunflower1968 in reply to slaccie98]

May I ask what hrt has he recommended to use even though you still have endo? I’m researching all my options so thank you fir sharing x

[slaccie98]

it's a 'combined' hrt estriadiol/dydrogeterone. hes prescribed it to reduce the menopause symptoms I'm suffering from. I'm also 45 so I'll be on it till I'm 50.

[EndoJaz]

Still have pain after hysterectomy. Ovaries left. They wanted to remove them next but I am opting for a lap to see what’s what first. It’s awful as you believe you will be pain free after a hyst but it continues. I was 42 so was talked into leaving the o’s. I still would have had the op tho as it has stopped the flooding which I couldn’t cope with. Good luck x

[Kangalou]

I had a hysterectomy last August, one ovary left behind.

I started to have pain a few months ago, scan showed a small cyst (4cm) which could be an endometrioma or a simple cyst (blood filled?).

I’m gutted. My pain has been really bad the last few weeks and I’m hugely bloated. I’m waiting for another scan to check on the cyst. If it’s still there they will remove but I’m worried that it has gone.... but I’m still in pain and left to live like this. I think the consultant might put me on the pill to stop ovulation... has anyone got experience of this?

[lainey37]

hi hunny I had a full hysterectomy 10 yrs ago this year and I'm still suffering chronic leg bowel and groin pain,had more surgery as bowel had attached to back wall.This was 2 years move and I'm now again suffering bowel pain x