HELP! Has endo returned?

[Donnac31]

Hi everyone ,

I’m just wondering if anyone has had a similar experience?

I had a total hysterectomy with removal of both ovaries in 2004 due to endo chocolate cysts severe, pain , and the gynaecologist said the adhesions on my bowl were the worst case she had ever seen.

After the surgery I tried several types of HRT, ( I was 32) and every type instantly started the pain again, so I went cold turkey .

I’m now 46 and 9 weeks ago upper abdo pain started with bloating , nausea &back ache.

I’ve had an ultra sound , endoscopy, CT scan and I’m awaiting an MRE scan.

It’s not my gallbladder, or an ulcer & nothing tumour wise has shown up on the imaging tests. There was inflammation showing in my blood (CRP) levels were 33 then 19 , but back to normal now , but the pain remains.

I’m in constant pain and it feels like the same pain as before, but of course I have no ovaries and no HRT.

GP hinted it could be adhesions from endo.

Has anyone else had a similar experience.

I’m in agony and on 60 mg of codeine & paracetamol 3 times a day .... I’m so fed up and don’t know what else it could be .

[saramarkwort]

Hi. I had a total hysterectomy nearly 3 years ago I was 36. My gynaecologist was not overly happy about doing it,but we had tried everything else. It had got to the stage where I could barely move for pain and the bleeding was so bad I couldn't leave the house most days. In the end, because I had a complete panic attack when he said no again, he agreed to do it but warned me that it wasn't a cure and that the pain from scar tissue can end up being as bad as the endo. I just wanted the bleeding to stop so was willing to risk it. I didn't go on HRT because I was told that if any endo was missed it would feed it and it can grow again,I didn't want to take the risk so like you have gone cold turkey.

The last few months I've been experiencing similar pain like I had before the op, the gp said its probably scar tissue.

I can't be much help and may not be very positive but just thought I'd share what my gynaecologist had said to me.

I hope you can find some help.xx

[Donnac31 in reply to saramarkwort]

Hi

Thank you so much for your reply. I’m so sorry you’re still in pain too.

I had no idea endo could re grow without HRT.

The doctors have been going down the gastro route , and haven’t considered its gynaecology issue!

It took years to get my pain diagnosed before the hysterectomy, and like you in the end I was in so much pain all the time , the bleeding and quality of life was so bad I just said PLEASE give me the pop.

The consultant said I was very ‘stuck’ with lots of adhesions , so I suppose it could very well be the cause😔.

I’m going to phone the helpline today too.

Hoping you’re pain is being managed and you get some help soon

[sharonmt]

Hi let me know how it goes, I had a hysterectomy when I was 27, had different health issues since also had my gall bladder removed 7 years ago been having pain for the last 4 years and it seems to be in a cycle x

[Gwen172]

Hi, I had a total hysterectomy 24years ago and was pit on hrt. I have lived with constant low back ache and sciatica and just put up with it. Nobody said anything about endo coming back. I live on painkillers too. It has only just dawned on me that this could well be endometriosis returning after all these years. I have asked to be referred to BSGE centre in Liverpool as last month I had really bad period pains and the penny dropped. Having read a bit more don’t think you get rid of endo by having hysterectomy and hrt feeds it. Just wanted to say you are not alone. Best wishes xx