Hysterectomy for Adenomyosis: Hi I’ve... - Endometriosis UK

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Hysterectomy for Adenomyosis

Signer43 profile image

Hi I’ve finally received a call from the hospital to say my hysterectomy will be going ahead in 3 weeks time. I feel so relieved but also starting to panic as I still haven’t decided if I should have my ovaries removed or keep them. My consultant recommends I remove them but I really don’t want to go into early menopause unless I have to (I’m 40). Has anyone else on here had a hysterectomy and kept ovaries and then found relief afterwards from their adenomyosis? Or vice versa? I really think some advice from people who have experience of this would help my decision. Thanks I’m advance x

18 Replies

Hi. Can’t offer advice but I’m going through the same. I’ve decided to have ovaries removed as think it’s the best hope for me as both have large cysts and are stuck together so not sure they’d survive the surgery. I’m 41. I’ve read up on hrt - endo nurse recommended a book called oestrogen matters- it is helping me decide on whether to take it or not - swaying towards taking as seems more positives than negatives. I’ve read a couple of posts from woman who end up back in surgery to have ovaries removed not long after hysterectomy - I would like to avoid this so hence I’m going to go the whole hog and get them removed. I’ll be watching this space with interest though to see what others say. It’s such a hard decision and seems we are both struggling with the same thought of menopause. ☹️Good luck when surgery comes round. Mine is on the 28th July. Already freaking out 😬

Signer43 profile image
Signer43 in reply to Smokey2020

Thank you for taking the time to reply :) it’s a big decision isn’t it sounds as though you have done a lot of research though to come to your decision which is good. My op is on the 22nd July so I will feedback on here how everything went. I have an appointment with my consultant before the op and I’m tempted to say I want to keep my ovaries unless he thinks otherwise once he sees them upclose and decides it’s better to remove. I just hope I can trust his judgment it’s awful having to make this decision without really knowing what the consequences will be either way :( my biggest concern is going through with the hysterectomy and it not making any difference to this agonising pain x

Smokey2020 profile image
Smokey2020 in reply to Signer43

It is awful that there’s no guarantees with the surgery. We just have to hope that we are pain free afterwards. My consultant did over to keep ovaries but in the same breath did say endo often returns and I just can’t face the thought of that. I want my life back so hoping beyond hope that making the right decision but as you say it is just totally unknown. It’s good you’re getting to speak to consultant beforehand. Don’t think I am as no appointment has come through. Good luck on 22nd.

Signer43 profile image
Signer43 in reply to Smokey2020

Thank you and good luck to you too hope all goes to plan for you x

Sorry ladies I’m not really in the same position but i am 6 months post hysterectomy I had a total hysterectomy so my Fallopian tubes Womb Cervix and ovaries I am older than you all at 55 and I had fibroids and ended up being blue lighted to hospital losing 2 lites of blood and passing out every half an hour I hadn’t started menopause before my op and to be honest I haven’t had many symptoms not hot flushes or sleeplesss nights etc since my op but I do have painful joints and am taking collagen and turmeric for these I am glad I had my ovaries removed and to be honest I wish I had had my hysterectomy years ago as I have suffered for at least 15 years I feel like in your 40s you can probably cope better with menopause symptoms earlier rather than later obviously big decision for you so I am sure you will make the correct one good luck I hope it makes a huge improvement to your life like mine has 👍🏼X

Signer43 profile image
Signer43 in reply to Janeyjane20

Thank you so much for your reply that really is so helpful to hear. I don’t know if I am worrying too much about the unknown effects of menopause and I should just concentrate on eliminating this pain and worry about that later on so yes thank you for sharing your experience really appreciate that x

Janeyjane20 profile image
Janeyjane20 in reply to Signer43

Good luck here’s to feeling better really soon ovaries or not 👍🏼👍🏼👍🏼X

Hi Signer43. I can only tell you about my own personal experience. I am now 6 months post hysterectomy and was 47 at the time. I had multiple large fibroids and it transpired after the op that I also had endometriosis. The heavy bleeding was horrendous and totally unmanageable. The Consultant was very keen to remove my ovaries(to avoid any possibility of ovarian cancer) and I had originally agreed, however after reading up on the subject, I decided I wanted to prolong the menopause as long as I could so decided to keep them. I feel great now and can go out in public with confidence. I have heard good and bad stories about going into immediate menopausal symptoms if you do have them removed, but as the previous lady said, she hasn’t experienced this so I suppose everyone is different. All I can say is I feel a new woman(with ovaries intact)!!! Do whatever you feel is right for you and the best of luck. Colette x

Signer43 profile image
Signer43 in reply to Colette73

Also quick question if you don’t mind me asking did your periods stop even though you kept ovaries? I have read mixed reports on this some sites say no periods after hysterectomy but some say if keep ovaries there is still a chance of bleeding which has confused me x

Colette73 profile image
Colette73 in reply to Signer43

They stopped completely even although I kept my ovaries. Feel free to ask me anything

Thank you for taking the time to reply that’s so good to hear as I haven’t spoken with anyone else who decided to keep their ovaries so it’s great to hear you have had a positive outcome. I have read so many negative stories about early menopause and future problems from depression to increased risk of heart disease but then on the flip side if I don’t remove ovaries then i may not solve my current problems so I’ve got myself in a right panic 🙈. I am due to see my consultant on the 13th for a final chat before my op on the 22nd so I need to be sure in my head of what to do before I see him as I find him very persuasive lol so thank you again for sharing your story x

I also found my consultant quite pushy and she didn’t seem at all pleased when I decided to keep my ovaries. I guess you need to weigh up the pros and cons then make an informed decision on what is best for you

Hi, I’m not sure how much I can add to help you, but….

I’m 41. I had a hysterectomy nearly 5 weeks ago and to me, I didn’t really think twice about having my ovaries removed. Yes, it means I’m early menopause. Yes, it means I’m on HRT for next 9 years. Yes, I’m going to have to get myself in a better place physically and mentally to protect my heart and bone health (my friend is a health coach and is helping me), but it has given me a focus to concentrate on me, fingers crossed with much, much less pain. And… although nothing is certain, there is less chance of the endo coming back.

If you have any questions, feel free to ask ❤️

Signer43 profile image
Signer43 in reply to Fuzzyk

Thank you so much for replying and sharing your experience. I think you’re doing the best thing by being so proactive and positive about deciding what is best for you. My problem has always been I overthink everything :) I wish I found it easier to make decisions lol. How are you feeling now you are 5 weeks post op? Are you pain free now or is it a bit too early to tell? X

Fuzzyk profile image
Fuzzyk in reply to Signer43

I was not worried about the op. I’ve had a laparoscopy and hysteroscopy 2 years ago, so new roughly what to expect with recovery. I was so worried about how my body would change and how I would cope with menopause. I was prescribed HRT as soon as I was sent home, but I also take citalopram which has helped me I think. I can’t stop it now, so one day at a time. I can honestly say now I know what hot flashes are!!

Physically, I’m doing ok. I did try and push it by going back to work last week, but my body said no on a few occasions, so I had to give in. I am much stronger now than a few weeks ago. I still do have some pain, mainly in my hips, but don’t really need any sort of pain relief. ☺️ I’m lucky that my husband has been amazing in doing all the things I’m not meant too, but I’m struggling to know what I can do and when. Got my 6 week follow up next week…hopefully that means I can start some more exercise soon as that is what is killing me!

Signer43 profile image
Signer43 in reply to Fuzzyk

Good to hear you have lots of support from your husband. Good luck with your 6 week check up & hope you have a speedy recovery and look forward to being pain free in the near future x

If I could go back I wouldn’t have had my hysterectomy with bilateral oophorectomy. I grew a massive cyst within a year of it which resulted in more open surgery.

Where it may cure your adenomyosis (it did mine), you still may have issues. Depends how advanced your endo is.

I’m currently trying to get my hormones sorted. I currently use Progynova patches.

Good luck. If have any other questions just drop me a message. X

Signer43 profile image
Signer43 in reply to Oamanda6

Thank you for your reply. Sorry to hear you’ve had further complications after your hysterectomy ☹️ I must admit that is something that really scares me. Do you think it was the removal of your ovaries and Fallopian tubes that was the problem? Would you still have had your hysterectomy if you could go back? X

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