Endometriosis after hysterectomy!!

[Gwen172]

Hi all, not sure where to turn. Had hysterectomy 24 years ago. Always suffered with low back pain and sciatica ever since. My symptoms are getting worse. Really bad period pains. Have been to specialist in BSGE centre and had mri which showed nothing. Next step is laporoscopy. Anyone had anything similar? Would love to hear from you.

[Tink14]

Hi Gwen172,

I am in the same boat as you. Nothing in the MRI, endoscopy or colonoscopy. I live in Scotland and the gynecologist I am seeing will not refer me to a BSGE centre as she says I don't meet the criteria. I will be getting a laparoscopy in about 8-12 weeks but she says that she doubts it's endometriosis as I don't have ovaries😢. At my wit's end, don't want to go through another laparoscopy if she has already decided she won't find anything. In my head that means she won't even look properly.

How did you get on? Hope you got the help and treatment needed x

[Gwen172 in reply to Tink14]

Hello tink14, nice to hear from a fellow sufferer! What stage Endo did you have before the hysterectomy? If it was stage 4 then that still stands and you should be referred to bsge centre where they know what they are doing, no point in general gynae. Have been to see another consultant and as I was on oestrogen hrt fir 20 years that had fuelled what Endo was left. You never get rid of it totally unfortunately. Not only that the next step for me would be excision surgery and he will do it in bsge centre with multidisciplinary team present so he knows it’s very much still active and boy do I know it. Please try and get the right help. Drs are still quite ignorant about the impact Endo has. Keep in touch. Wishing you all the very best xx

[Tink14 in reply to Gwen172]

My medical notes believe it or not do not actually say what stage I am. Way back years ago it was stage 1 but nothing since. The general gynecologist says she can't refer because I don't meet the criteria. Will let you know what happens.

Glad your getting the treatment needed

Thanks for replying

[Kangalou]

Hello! Not exact scenario but I had my hysterectomy 13 months ago.

I kept one ovary and over the last few months have started to have that all too familiar pain....

I had a scan which showed a small (4cm cyst) and have seen a consultant privately. The cyst might be an endometrioma but equally may be a simple cyst.

Over the last two weeks the pain has become quite bad, at times debilitating. I am massively bloated and am struggling to eat.

I need to wait for another scan at the end of this month. I’m worried that the endo has returned but that the scan will show the cyst has gone. Then they will do nothing and I will feel awful indefinitely....

So no advice but lots of sympathy from someone in an adjacent boat! Xx

[Gwen172 in reply to Kangalou]

We are all at different stages but we can all relate to the pain that goes with endometriosis. Most of my friends and family don’t have a clue so it’s nice to chat to like minded people. We know what we go through daily. I just hope that there will be more awareness of this cruel, debilating disease that we are stuck with. Best wishes to you. Xx