Trying to decide on next move - Hysterectomy or not?? I would love to hear others experiences etc

Hello I am a married woman of 46 who has 2 grown children and was in good health till about Oct 2010. Basically for the last 3 years I have had a period, in that I tend to only get a few days without bleeding.....I have tried many things such as Northisterone to try and stop the bleeding, that didn't work so I then had a Rollerball Endometrial Ablation, and that too was unsuccessful.....so we tried Zoladex Injections but they too are unsuccessful, so my consultant has decided to continue the Zoladex and add Livial tablets for another 3 months whilst I decide if I want a Hysterectomy or not.......I think that is my only option left but I cannot decide whether to have the Laparoscopic or Abdominal Hysterectomy and also if I should have the subtotal or total hysterectomy. My consultant says he recommends conserving my ovaries. Would love to hear others opinions :) I suffer from Lactose Intolerance and IBS too

13 Replies

oldestnewest
  • There is a post on here further down with lots of comments similar to yours hope they help x

  • Hold on to your ovaries--or at least one of them, to avoid a life time of needing HRT. One ovary is just as good as two at providing protection for the heart and the trunk bones (spine, pelvis, skull, ribs etc.

    I'm 45..tried tranexamic acid, norethisterone etc with varying success, and the zoladex .

    But found huge relief from the mirena coil, which did stop my periods and period pains and gave me back my life again. I too was bleeding up to 3 weeks every month and it was ludicrous just trying to cope with that, never mind everything else. It ruled every part of my existance.

    Mirena transformd life for me, and I heartily recommend at least trying it as one option to avoid big op surgery. I am down to one remaining ovary too now, and no HRT required because it is still working. It was liberating to at long last be free of the monthly hell burden of periods. Literally transformed my day to day life, gave me back a life and that is no understatement.

    It does take 4-5 months to get working, which does mean putting up with bleeds till that happens, but if you can get through that and it gets to work, it really can transform things.

    So that is certainly one non surgical option you might want to consider too, bu if you do opt for a hysterectomy to stop periods then definitely try and retain at least one working ovary till you can naturaly menopause. That usually happens on average at about age 55.

    Avoiding 10+ years of HRT every day, just by keeping one ovary is a pretty enticing option.

  • hello impatient, I previously had the mirena coil for years but wasn't till the last one that the bleeding began and my very supportive GP then removed it thinking it was over stimulating but after a few months still bleeding but we tried another mirena coil but the bleeding continued and I didn't need it for contraceptive reasons so had it removed again. I appreciate your response and will discuss with GP and consultant about keeping one ovary. thanks x

  • Thanks for your reply but I had already tried the Mirena Coil without success....I have made my decision and am having the lap sub total hysterectomy :) A bit worried but a LOT of relief at the thought of no more bleeding!!! After 3 years you will understand this will be a HUGE relief :) I am keeping my cervic and both of my ovaries as they are working. Hopefully the recovery period will be smooth sailing. Good luck with your coil x

  • Hi, I was 32 when I had my hysterectomy, like you bled constantly, became iron deficient kept ovaries and all good until now. I'm 42 and have lots of problems with cysts and pains this last year nothing before that. I've lost 1 ovary recently and am on HRT already and about to have other out very soon. Although no periods cysts get large and cause grief. I'm probably a little different as my mum died of ovarian cancer so feel keeping mine with the pain is such a risk anyway. HRT is not that bad just make sure your GP is supportive. Hystersisters is a great website which may help you choose but there are many of us on HRT doing well too. Good luck x

  • Hello help123, thanks for your response I'm sorry to hear about your mum, thanks for the information about the website I will check it out.......I am just not sure what to do ....information overload :)

  • Research is good, but talk to family and friends too. My GP told me about a lady in her 80s at my surgery who is so happy with HRT she won't stop. Ask your GP if female about others at your surgery it may reassure you too.

  • I had a hysterectomy a few years ago and lost my ovaries, so now on HRT. Took me a while to get the HRT right but now I don't mind taking it (I'm the same age as you and frankly some of my friends without endo are starting to take it anyway). However what I didn't expect was that losing my ovaries and all those hormones really did make me feel different - I don't feel as emotional, have very little sex drive etc. Maybe it's in my imagination or would have happened anyway, or to do with the finality of knowing I can't have more children. However with hindsight I really wish I had asked to keep an ovary. But then if I suppose if I had I might have been suffering more with the endo still! So it is a really difficult question. Also you can feel a loss at losing your womb, but other women I know who have had a hysterectomy (but still have ovaries) due to heavy bleeding haven't felt this and haven't looked back.

    Just also to point out that despite the op I do still have some pain similar to those I used to have so my doctor's referred my to endo clinic to see what might be going on, though obviously in your case if bleeding is the main problem then not having to worry about that is wonderful.

    Good luck with whatever you decide, you're doing the right thing by finding out about it. I didn't - I rushed into it and now wish I had done a few of my own investigations first, even if it's just to know what to expect.

  • Hello :)

    If the problem is the bleeding...if it was me, I'd thank your womb for doing its job in carrying your children then have it whipped out by laparoscopy. It's a much smaller operation with shorter recovery time (in fact, have they not suggested removing it vaginally?). And I'd leave the ovaries where they are if they're not causing any problems. That way you avoid the whole HRT scenario because your body is still doing it naturally.

    Are you tending towards any option over the others at this stage?

    C xxx

  • Hello Chrissie66

    Yes I have made my decision and have already had my pre assessment for surgery. I am having the lap sub total hysterectomy :) I am leaving both the ovaries and cervic so although I have to still have smear tests the relief regarding the bleeding will be enough :) My womb tend to lie back my consultant said so he recommended the lap as my best option which is fine with me :) thanks for your reply

    Lainey

  • Hi Lainey

    I had a hysterectomy aged 41 although my problem was pelvic pain and no bleeding. However I had such pain it was almost as though I was bleeding. Sort of like the first day of your period over and over.

    I had a good result on the GNRH analogue injections and actually felt human again which helped me decide to go for a hysterectomy. Unlike you I didnt have children so it was a hard decision to make but I was fedup of being in constant pain.

    I had a LAVH so it was mostly laparascopic with small incisions which aided my recovery. I only had one ovary left by the time I had my hysterectomy as I'd lost one 2 years earlier due to an ovarian cyst. My consultant did leave my remaning ovary but this had to be removed in another operation a few months later.

    I have chosen not to take HRT as I have had a lengthy battle with endo and I dont want to take something that may compromise my improved state of health. I realise I am lucky as I only suffer the occasional hot flush but few other symptoms.

    My GP supports my decision and I have recently undergone a bone density scan to see what effect being menopausal for two years without HRT is having on my bones. If the results show the damage is high then I know I will have to reconsider my decision not to take HRT.

    As your major symptom is heavy and prolonged bleeding this would be improved by removing your womb only and your ovaries could be conserved so eliminating the need for HRT.

    Good luck with your decision

    Caroline, x

  • Caroline, I would just like to say thank you for your post. I am 41, no children, been battling with stage 4 endo, ibs and cfs/me for 17 years and constantly bleeding since 2009. I have been booked in for total hysterectomy on 7th Jan 2014, but was finding it difficult to come to decision about it. However, having read your story it has helped me to come to terms with what is about to happen. Thanks again xx

  • thanks for your reply :)

You may also like...