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Endometriosis UK
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Hi all

I'm 41 and have been listed for a hysterectomy in a few weeks. Iv had lots of problems over the last 10 years. Iv had an ovarie removed in the past and have tried all medications and injections over the years. Iv also had 2 lots of IVF treatments both failed. My lady times have gotten worse since my last IVF treatment just over 2 years ago. I have a brilliant gynaecologist who has done his best over the years to try and treat this horrible condition. Both my hubby and me have gone through a lot together in that time and once again my hubby stands by me at a very difficult time. Has anyone gone through a hysterectomy? Is there a support group for post op advise?

Thank you for reading and I hope all is well with you all. X

1 Reply

Hi, sorry to hear about the difficulties you've had and continue to have. Can I ask why you are having a hysterectomy please? Is it for endometriosis or another reason?

The reason I ask is because hysterectomy is rarely a cure for endometriosis, particularly if endo is not thoroughly excised (ie cut out) at the same time. Whilst endo can and often does effect the reproductive organs it can also effect other areas such as the bowel, bladder, peritoneal lining, ureters and in rare case even the kidneys, lungs and brain to name a few. Often general gynecologists are only interested and skilled in dealing with the reproductive organs and lack the skill and expertise to (a) recognise endo in its many different forms and (b) to thoroughly excise it from all effected areas.

Furthermore whilst oestrogen is considered culprit in the development of endometriosis the disease and the mechanisms behind are still not fully understood. There's even research to suggest it may be an autoimmune disease and this may be why some women even after after hysterectomy with oopherectomy (ie removal of the ovaries) continue to remain symptomatic. In addition, even after a surgically or naturally produced menopause the body continues to secrete some oestrogen from various glands meaning it is possible that existing endo will continue to be fed and/or new endo may develop.

Hysterectomy is rarely needed if the surgeon is skilled enough to excise the endo. Do you know whether your specialist is BSGE accredited? For reference there are nationwide accredited endo specialist centres that were created for women particularly with severe rectovaginal endo. Women can ask to be referred to any one of the centres nationwide. You can find a list of the accredited centres at the following website and by clicking on the tab labelled "Endometriosis Centres" and then "BSGE Accredited Centres":


I am 39 and am currently 8 weeks post op from having major excision surgery for endo and a total hysterectomy (ie uterus and cervix removed) for adenomyosis and endometrial polyps. The operation was done laparoscopically by an accredited endo centre and took almost 7 hours. I had endo on my ovaries, fallopian tubes, bladder, pouch of douglas, ureters and peritoneal lining. The hysterectomy was done purely because of the adenomyosis for which hysterectomy is a definitive cure for. Adenomyosis is similar to endo but effects the muscles of the uterine wall whereas endo does not.

My surgeon believes vehemently in preserving the ovaries wherever possible due to health risks associated with early menopause (eg cardiovascular disease, osteoporosis, early dementia) and the increased risks associated with using HRT. Even with ovary preservation research suggests that unfortunately the ovaries tend to stop functioning within 3-5 years of having a hysterectomy. But at least that's an extra 3-5 years I will hopefully have before I have to make any more major decisions.

I was in fact told by a general gynecologist when I was 32 that the last endo treatment options available to me having tried everything else was hysterectomy or tramadol to help me cope with the pain. It was then I started to educate myself on endo and play an active role in my treatment plan. I managed to reduce my symptoms to a more manageable level for a number of years by sticking as closely as I could to the endo diet, reducing my stress and exercising daily.

When my symptoms became unmanageable once again last year I did my research and learnt of the BSGE accredited endo centres. My GP didn't even know about them despite NHS guidelines recommending that women with severe rectovaginal endometriosis should be referred to one of these centres! Previously I had 3 laser surgeries to remove endo which is ineffective, particularly with deep infiltrating endo, as much like a weed laser surgery tends to just burn off the top rather than remove it by the root meaning it is more likely to grow back. Also most general gynaecologists won't touch the endo on vital organs such as the bladder, bowels, ureters etc because it takes a lot of skill and training to do so without causing damage. As such I doubt my endo was thoroughly removed previously anyway. Do you know where your endo is?

If you still feel that hysterectomy is the right decision for you there is a good support forum that can be found at the following website: hystersisters.com

I think it's an american website but I know UK women also participate on there.

Please reconsider your options if hysterectomy is only being considered because of endo. You may not get the results you hope for and it is a big operation which cannot be undone.

I wish you all the best, Jo x


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