endometriosis advice

[CP44]

Stupid question! Can endometriosis return aftre extensive gynae surgery and a hysterectomy?

[Hidden]

Not sure. Thought if any tissues remained hormones would be needed to trigger inflammation.

[Casablanca]

Exactly and if ovaries were left intact after hysterectomy there are still hormones!

[flowerbomb]

HI CP44

Whether endometriosis will come back (recur) after surgery depends on how severe the disease was at the time of surgery and how completely the surgery removed your lesions. Lesions that appear after surgery may be new or pre-existing. For this reason, it may be difficult for your doctor to tell whether your disease has come back or is progressing. Many studies also report patient symptoms as a sign of new disease.

The most recent studies have shown that endometriosis recurs at a rate of 20 to 40 percent within five years following conservative surgery. The use of oral contraceptive after surgery has been shown to reduce the recurrence of pain symptoms. In women with advanced recurrent endometriosis, one study demonstrated a higher pregnancy rate with in vitro fertilization (IVF-ET) rather than another surgical procedure. Surgery or medical therapy may be considered to relieve pain in infertility patients.

Surgical removal of the uterus (hysterectomy) with or without removal of the ovaries (bilateral oophorectomy) is often used to treat endometriosis associated with pelvic pain or nearby masses in patients who have completed their families. A recent follow-up study investigated the recurrence of symptoms after hysterectomy with or without removal of the ovaries. In women who kept their ovaries, a higher proportion of women required further surgery compared with women who had their ovaries removed. However, removal of ovaries is accompanied by significant side effects. No adverse effects of estrogen therapy on endometriosis have been reported in many studies. Furthermore, two recent studies have shown no advantage in delaying the onset of estrogen replacement therapy.

© Copyright 1995-2010 The Cleveland Clinic Foundation. All rights reserved.

[CP44 in reply to flowerbomb]

Hi Flowerbomb!

Thank you for this, v interesting reading. I had a total hysterectomy, nowt there! I'm on hormone patches. My new colorectal dr is being v good and doing a process of elimination. Waiting for the result of recent CT. He keeps coming back to endomeitriosis... So that's why I'm curious if it can come back..

[PPSN_JudyB Pelvic Pain Support Netwo]

It's not a stupid question at all: it's hard to tell whether it's recurrent endometriosis and/or adhesions or something else. There are very good reasons for not removing the ovaries such as the increased risk of cardiovascular disease and dementia.

I guess it all depends on the extent of risk and patient preferences !

[CP44 in reply to PPSN_JudyB]

Hi Judy

I had one ovary removed after a complication with an ectopic in '99.

The 2nd removed when I had the hysterecomy in 07.

So 4 years on, severe pain daily, 9 laparoscopies since then.. no further forward. Keep getting told. Adhesions do not cause pain...

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi CP,

It's not true that adhesions don't cause pain. Some adhesions don't BUT some do and can be very debilitating. Have you got the surgeons reports about any of your surgeries ? these may well shed some light on the matter. It's the only way I found out that adhesions were a major issue in my case.

[CP44 in reply to PPSN_JudyB]

Hi Judy

I do have reports on them all, and have been told that I have some adhesions on my small bowel... Had some removed last year. But I'm just in so much pain. Always in the same 2 places. Sometimes its so severe that I think my appendix is bursting. I had another CT 2 weeks ago and the surgeon has asked to see my previous one from 2 years ago. And wants to see me again next week. So fingers crossed he "finds" something, as stupid as they sounds. Or I will begin to doubt my own sanity

[PPSN_JudyB Pelvic Pain Support Netwo]

That's good that you've got that information. Do you take copies with you or a summary to your consultation ? consultants don't always have the full information. Who do you see and which hospital ? hope you make some progress.