Thinking again about hysterectomy

I am due to have my first lap next month at a BSGE centre. I've had a lap before but it was purely diagnostic and no endo was removed.

The lap next month is intended to be exploratory, with a second more extensive surgery to be carried out after christmas. The BSGE consultant is recommending a hysterectomy and removal of ovaries with complete excision of the endo but I just don't know :/ I was originally referred to them when the first gynae I saw admitted that my endo was beyond him. I had hoped that I would be able to have an excision surgery and then manage with mirena/painkillers etc.

The problem is that I have extensive bowel endo/rectovaginal endo plus adenomyosis. Fertility is not an issue as I already have children and don't want any more, but I am only 39. The BSGE consultant basically said that an excision is possible, but due to the adenomyosis, I will still have pain afterwards and still need hormone treatments such as the mirena, and if this worsens and I then need a hysterectomy in a couple of years I will not be able to have one due to the fact that scarring from the excision will most likely stick my uterus back to my bowel and a hysterectomy at that point could cause significant damage to the bowel. Basically it's a trade off between the ovaries and the bowel, and the loss of ovaries is easier to treat than a scarred bowel.

But I just don't know. Everything I read says that hysterectomy is wrong, removal of ovaries is wrong, it doesn't help, I could be left worse off. At the same time, this is a consultant at a BSGE centre and he is the second surgeon to say a hyst is my best option.

What are people's thoughts on this?

5 Replies

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  • I too have been told that I need a hysterectomy due to adenomyosis, multiple fibroids and extensive endo which is stage 2. I have seen 2 gynaes, on is a general gynae and the other an endo specialist at BSGE centre. Both have said they would not remove the ovaries due to it bringing on early menopause. I also stated that I do not wish to take any medication.

  • It is a difficult situation. Does the consultant say it is best to have hysterectomy for sure? Would he recommend this treatment if you were his sister for example? Maybe you could write to him and ask this?

    When I had my endometriosis removed, the consultant said he may have to remove the ovary but will try to avoid unnecessary surgery where possible. The two people really want the operation to be successful are you and the surgeon. Hopefully you can talk to him after the diagnostic laparoscopy and get a clearer picture.

  • For adenomyosis hysterectomy is only option. For endo excision is best.

    If they thoroughly excise endo at time of hyster then all should be well. And at least you are with BSGE centre so getting best care.

    I had TAH and BSO but by General gynae so left with endo so still fighting pain. I had adenomyosis as well as endo and at least the v heavy periods have been resolved 😀 Just trying to get endo excised by BSGE centre now to get rid of that pain.

    Good luck

  • Hi Jo

    I'm so sorry to hear you're suffering so badly. I feel for you.

    I myself am waiting on surgery to remove stage 4 Endo. My Bsge consultant is trying to remove all Endo from liagments, PR space, ovaries and numerous other places. I have also focal adenomyosis. No hysterectomy has been discussed at this point. But I haven't had children and he knows that. Plus the MRI didn't show bowel envolvement. I agree it's a difficult decision to make. I myself would like to retain my uterus for as long as possible. Although if the pain persist after surgery I may have to consider otherwise. If you really are struggling to decide maybe a second opinion might help?

    If you have an understanding Doctor, maybe try discussing this,

    Wishing you all the best on this difficult journey.

    X

  • Thanks everyone. It's the fear of the unknown, really, not knowing what life without ovaries will be like. My mother went into early menopause at 45 following chemotherapy and basically turned into an old woman overnight and that really terrifies me. She gained a lot of weight and kept her hair short and basically gave up and I am frightened that this surgery will do that to me. I've had long and frank chats with the practise nurse at my GP's who assures me that it does not have to be this way and that I'm so unwell with the endo that I am likely to find the surgery and menopause actually makes things better, not worse.

    So far this year I've had a mirena, 5 months of decapeptyl with livial hrt, 5 weeks of norethisterone and I've now been on cerazette for 3 months. I have continued to bleed and have pain on everything, and have had to go to A&E for pain relief even with the hormones and assorted prescription painkillers. I'm currently on my 4th heavy period in 3 months on the cerazette and I am so fed up of drug treatments that don't work.

    I've got an endo nodules on my left ureter, right uterosacral ligament, right adnexae and rectosigmoid colon which all measure 2-3 cm. Kissing ovaries, hydrosalpinx, adenomyosis, everything glued very firmly to the bowel on the right. I've been told a stoma is likely even if they don't have to do a bowel resection because there is so much endo to remove from the bowel. Can't help wondering if it's worth keeping a reproductive system that is so diseased and making me so unwell.

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