Should I get hysterectomy/ part of bowel removed? Is it worth it??

Hello,

I'm 44 and have stage 4 endometriosis which has affected my bowel. I am currently getting Prostap injections once a month and had the coil fitted4 years ago. I have had endo since the age of 25 and for the last 4/5 years, the pain has been worse and more frequent. There have been a number of 'mishaps' along the way, including a lack of info being passed on to the relevant medics and years without a diagnosis. I was also operated on for appendicitis when it was in fact endometriosis. A year and I have ago, I lost 2 pints of blood during a laporoscopy and it took me a good 4 months to start feeling normal again.

I have been advised to get a hysterectomy, ovaries removed and some of my bowel removed. The likelihood is that this will involve a temporary colostomy bag. I was put on the waiting list for the wrong operation (!) but am finally due to get it in the August/September. I had an appt with the colostomy nurse last week and am having major doubts. I am worried that the operation will mean feeling unwell for months and that they may not be able to remove all the endometriosis. After so many negative experiences with the medics, I am thinking it is too much of a risk. My family are all keen for me to get it done but I'm not so sure that it will actually change my quality of life. On the other hand, it may be 6/7 years until the menopause and endometriosis affects things on a weekly and often daily basis.

I just wondered if anyone could give me advice about the op, or if anyone had found any alternative ways to take control of the endo. I have tried acupuncture to no avail and take supplements too. Has anyone tried womb massage? Or, does anyone know where I can go to get it treated holistically? ( I live in Scotland)

Apologies for the long post!

I would welcome any advice

3 Replies

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  • Are you being seen at a bsge centre? I had a hyst and BSO and bowel excision 8 weeks ago. They were fortunately able to shave the endo off my bowel so I didn't need a resection (though they had warned me it was a possibility). The first month of recovery was tough but I am now in no pain and have no regrets. I'm 39 so a few years off menopause but I couldn't carry as on as I was.

    There is no evidence to show that any holistic therapies have any effect (sorry) other than perhaps help some women cope with their pain.

  • Thanks a lot for your helpful reply. It's good to hear positive feedback. What is a bsge centre?

    I attend the local big hospital and go between gynae and bowel dept.

  • Hello, BSGE centres are medical staff that deal with mainly extensive endometriosis. They're known to help a lot more in the endo department then a normal gyno. bsge.org.uk/centre/ here is a link to find your closest centre. You can get your GP to refer you.

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