Endometriosis after hysterectomy?

[Sm1989]

Hi all I’m just looking for some advice. I had surgery (laparoscopy) in 2019 to laser the endometriosis off. I have since had a son 3 years ago (c-section) and in March this year I had a hysterectomy (kept ovaries that’s it) and laparoscopy to cut the endo away again. It was on my ovaries, fallopian tubes, womb and bowel. I felt great for a couple of months but month by month the tiredness has gotten worse again, the pain is excruciating and I feel like I’m back at square one again and that it might have come back. My question is…. Can it come back this quickly? I don’t want to get my ovaries taken away as I’m only 34 and don’t want to go into menopause just yet.

Any advice would be great!!

Thanks X

[Avourneen]

It can come back after 6 months, I've had friends who have had a big excision then are back in the same position after a few months. If you have a hysterectomy and keep your ovaries the chances of it coming back are much much higher than with having ovaries out. Your best bet though is not to guess but to go and get an MRI and see a good gynae. I hope it hasn't come back and you are just tired, good luck.

[Lindle]

Was the hysterectomy/lap done in a specialist endo centre and where are you in the UK? Treatment pathways can vary depending on what country you are in.

[Tropic]

can you still have endo despite a hysterectomy?!

[PaintToughTed in reply to Tropic]

Yes! It’s sad but unfortunately, there’s a 20% chance of it coming back if they left the ovaries, and a 5% chance if they remove both ovaries. Even if a microscopic amount is left during the rather large procedure that a hysterectomy is then it can grow back.

[Tropic in reply to PaintToughTed]

Where can it grow back if uterus and ovaries are taken?!

[PaintToughTed in reply to Tropic]

Anywhere in the abdomen.

[Tropic in reply to PaintToughTed]

😧

[Sm1989]

I had the head of the endometriosis centre in Edinburgh do my hysterectomy and laparoscopy at the same time. I have booked an appointment for end of next month to see the consultant again but I’m praying it hasn’t come back so quickly. Last time I had the laparoscopy it came back within around 6month but I thought having the hysterectomy (keeping ovaries) would prevent it coming back so quickly. I just feel like I’m back at square one again and don’t know what to do!

[PaintToughTed]

This is heart-breaking, I’m so sorry you feel like you’re right back at the beginning. I had similar (hysterectomy and keeping ovaries) back in Feb. Had surgery last week as had bowel adhesions with abdominal wall and my left ovary had adhered to my bowels as well.

They also found two spots of endo regrowth when they were in there, which was a surprise as hadn’t really felt anything that felt like endo pain, but then again i hadn’t before despite having it extensively.

Are you still under the care of the endo centre? If not, I’d ask your GP for a direct referral back to them ASAP. Hope you’re doing okay, it must be nerve wracking!