Has anyone with endometriosis (particularly rectrovaginal) been fully cured after surgery?

[CCWildSwimmer]

Hi everyone, this is my first post on here - great to find a community who can finally understand the issues I am going through.

I have had pelvic pain ever since I got my period 25 years ago, and have been misdiagnosed with so many different things, but finally had a diagnosis of rectovaginal endometriosis and had laparoscopic surgery 2 weeks ago for a total hysterectomy end removal of endometriosis.

I am just wondering what to expect post recovery as they had said that they had removed all ‘visible’ endometriosis from my pelvic area and bowel, however my ovaries were intact (therefore I know that this can mean pain is more likely to return) and I am also aware that there could be endo within my bowel that they won’t have been able to see and remove… does anyone have any experiences/advice to share with me?

TIA x

[charlatan]

Hi,

My history is almost exactly the same as yours and I had my op to remove the endo back in September. Recovery took a fair while but ever since, I’ve got my life back. Pain and nausea is almost nonexistent. Still have a bit of fatigue but way better than it used to be. It’s a sad fact of our condition that there is no cure so yes, it might come back but if I get a few years free from endo… I’ll take it.

I hope you’re feeling well soon and fingers crossed for an endo-free future x

[CCWildSwimmer in reply to charlatan]

Thanks so much for taking the time to reply! Yes, I have come to terms with the fact that I may need to deal with ongoing management of pain, however it is really reassuring to hear that your symptoms have improved - I hope that continues to be the case for both of us x

[Lindle]

Did you have a scan prior to surgery that diagnosed it?

[CCWildSwimmer in reply to Lindle]

thanks for replying! It’s a strange one, I had a laparoscopy in 2020 where they removed scaring and split adhesions in my pelvis that they thought were caused by pelvic inflammatory disease, however they couldn’t see any endometriosis at that time. My pain came back around a year ago and bowel symptoms were getting worse also, so they did an MRI which seemed to show that I had deep endometriosis in my pelvis and bowel, however they didn’t believe it (they said that MRI scans are not clear and can mistake shadows for other things) until they did the surgery 2 weeks ago and then they found and shaved the visible endometriosis from this area, as well as doing the hysterectomy (it was a gynae and bowel surgeon who completed this). The bowel surgeon was only there as a precaution given my MRI results but as they found endometriosis on the bowel, he was involved in removing it and ensuring that the bowel was safe during the surgery.

[Lindle in reply to CCWildSwimmer]

This all sound a bit shocking. Did you have surgery 2 weeks ago in a specialist endo centre?

[CCWildSwimmer in reply to Lindle]

I guess it is quite shocking when you look back but I’m so used to being past from pillar to post on this and being ignored for several years… I was sent to a sexual health clinic for several years as they had misdiagnosed my endometriosis as pelvic inflammatory disease (even though have been married for 13 years and I’m nearly 100% sure there is no chance I could have had an STD and the STD checks had already come back as negative)…

When I was finally referred to a gynae surgeon for a laparoscopy in 2020, I was told it would take up to a year, so I went to a private gynae surgeon (I am very lucky to have private medical insurance via my employer) and both laparoscopic surgeries in 2020 and two weeks ago were completed in the private hospital. A Gynae surgeon who specialises in endometriosis was the lead surgeon and a bowel surgeon was also assisting on my surgery 2 weeks ago given that my MRI showed that I had endo deep in the bowel as well as pelvic organs. I have never heard of a specialist endo centre, however I am in Scotland so perhaps this is different?

[Lindle in reply to CCWildSwimmer]

Ah yes, Scotland is somewhat different. You have 3 NHS endo centres but it seems they all apply their own rules and getting a referral can be difficult.

[ferns80]

Hi

I was diagnosed with stage 4 rectovaginal endometriosis in 2018 and had excision surgery in January 2019. I had my left Fallopian tube removed but kept ovaries and womb as there was possibility of IVF.

After 6 weeks I was able to start a phased return to work and as others have said got my life back. Previously I had been off work for 7 months with constant pelvic pain.

The consultant said I’d probably need further surgery and a hysterectomy and ovary removal after 2-4 years and I am currently on the list for this.

Since the surgery I haven’t really had periods as I’ve been on the pill and then from last year on decapeptyl injections. This manages my symptoms well and I only have occasional pain on nowhere near the scale as before and I do sometimes feel fatigued but it’s made a massive difference. I was having blood in my poo and extreme pain on emptying bowels and all that has gone.

I hope your recovery goes well and you get good relief from symptoms.

[CCWildSwimmer in reply to ferns80]

thank you so much for replying! Whilst it’s sad to hear so many women going through similar issues, it is reassuring. I am so sorry that it has impacted your fertility however and sending you lots of love for that as I can’t imagine how hard that must be. I hope that you get your op soon and that it helps resolve all your issues x