Endometriosis UK

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Hysterectomy side effects

I am considering a full hysterectomy (ovary removal too). I haven't spoken to my doctor yet. Could anyone who has undergone this please tell me what the side effects were for them? Do you have bad menopause symptoms and have you been able to combat them and how? Have you had a lot of weight gain? Would you say it was the best decision made? Any info would be so helpful. Thanks!

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Hysterectomy

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I have a gyne appointment next week and hoping they will do this for me. we found out 2 tesrs ago we can not have children .we have adopted a little boy and find it hard when I have a period to even get out of bed . which is not fare on my son ,so I am hoping they will suggest this but not if they will but I am going to ask . I am 39 but someone said to me you have to be over 40 .so I would be interested in any answers to your question x

I'm 32 and have pcos, endo and adenomyosis. My hysterectomy is booked for March 5th.

I know everything that goes with it but in my head I just keep thinking that a year of recovery beats another 15+ years of heavy periods, pain, iron deficiencies and heavy medication use. I just tell myself that I am doing it so I am able to get out of bed and play with my daughter instead of being in my bed for weeks on end!

I hope you both find some help soon xx

Thanks. I totally understand how you feel. I have a grandson I want to be well for...X

Hi, I am 12days post-op from total hysterectomy, cervix removal and part bowel removal because of stage 4 endometriosis and adenomyosis. Haven't been put on HRT as it encourages any leftover endo to grow. So far I haven't had an side effects, unless you call loosing 8lbs in weight a side effect, in which case this is a side effect I do like! I do hope you all get the help you need and sooner rather than later too. Feel free to PM me if you want to chat or have any updates. I will be praying for you all xx

Hi Fordie777, your post regarding your hysterectomy is such a positive one! Sorry that you had to have part of your bowel removed; I think it might be the same for me if I have a hysterectomy; it is so messed up in there...After chatting with my GP yesterday I am now giving it a little while without the meds to see how things go and then we will decide if the next step if a referral back to see my consultant to discuss surgery....X

Hi Bokkie, I hope all goes well for you. I'm here if you need to chat about anything. xx

Hi, I had a full hysterectomy with ovary removal a few years ago. I was 43 and went straight onto HRT to protect against osteoperosis etc. Since the operation I haven't suffered from any menopause symptoms at all, probably because of the HRT, which I'm now supposed to be on until I'm about 54. I haven't suffered from any weight gain either.

The main side effects I've had are lack of sex drive and generally feeling a bit flat and less emotional than I used to which I think is the effect of losing all those hormones including some testosterone when my ovaries went. However it's hard to tell as realising that I couldn't have more children might have been a bit of a downer too, or the HRT might partly be the cause.

I've also had pains similar to the ones I had before the operation, which confused me a lot at first as my GP and consultant made out this would be pretty impossible. However from reading around I know now that even with a full hysterectomy the pain can still come back, maybe due to the oestrogen in the HRT, and my GP is coming round to the idea. So I am due to go the hospital in March to discuss it with them. However the pain is much less than it was before and very sporadic.

I don't regret losing my womb (I had adenomyosis as well) but do regret a bit losing my ovaries because I think it's affected my mood and sex drive so much. It is certainly worth discussing this with your consultant. However I think in my case they were difficult to save because of the cysts and being so stuck down, so I probably didn't have much choice.

Everyone's story on this issue will probably be a bit different but I hope this helps a bit. Good luck with the decision.

Hi. Thanks so much for your reply. I saw my GP yesterday and we have decided that I am not going to have my next Depo jab (due in March) as it is not doing anything to help pain wise and see how things go for a few weeks / months without treatment to give my body a break from drugs.. Although I have stage 4 and adenomyosis I don't seem to have as much pain as some ladies do so I think I may be able to do it; it's just the possible heavy bleeding and Anaemia I dread . I consider myself lucky. My GP seems to think that if I don't start a natural menopause now after having had Zoladex last year I will probably be a candidate for ovary removal and hysterectomy and she will refer me back to my consultant. She did say though, that as I am 48 I would probably not be given HRT after the surgery because it feeds the Endo and so defeats the object and so she has warned that I will go straight into a full blown forced menopause which could be a challenge. I guess I will probably have to try calcium tablets instead of HRT for the bones??? Mood swings and a low sex drive are the least of my worries; I just want to feel well again......I have a 2 year old Grandson and I want to be ok for him....

I haven't had a hysterectomy and the registrar at the hospital said it wasn't even an option.

I have stage 3/4 Endo, diffuse adenomyosis and PCOS, my bowel, ovary and

uterus are all stuck together. I am now 43 and had Endo and PCOS diagnosed when I was 21.

I was sent away from hospital after being told the mirena would help me! No other treatment was mentioned.

I feel as though we aren't listened to when it comes to what we want for ourselves.

I would like to have my womb taken away. I've had my children and it only gives me pain, aneamia and heavy blood loss. I've finished with my womb but it seems it's not even a treatment option for me at the moment.

I know the Endo will not be cured but the adenomyosis will be if my womb is removed.

Good luck with the decision you make.

I send you and all the ladies on this forum my best wishes and cyber hugs.

Barbara x

I am sorry to hear about your terrible suffering - I have exactly the same. After my lap my consultant told me that if medical treatment didn't alleviate things (which it hasn't) I could go back to discuss surgery. I am pushing 50 and definitely don't need my 'lady bits' anymore either. To stop the endo your ovaries must be removed and removing the womb gets rid of the bleeding and pain that you get from there. I cannot believe that you have not been offered alternative treatments. I was so fed up of being poked and prodded that I didn't want the coil fitted. I think you should ask your GP to refer you back to the hospital again to see someone different (maybe a Consultant who specialises in Endo) about an endometrial ablation and the different type of hormone treatments available; they might work for you better than they did for me and are definitely worth a try?? You shouldn't have to suffer like this - it is disgraceful. There was an article in the Daily Mail newspaper today about Endo in the health pages that stated that too many women are getting sent away as having 'nothing wrong but heavy periods' and are not being given the right help. Keep pushing for a resolution - you deserve it! BIG cyber hugs and best wishes to you too. Good luck! XXXXX

Dear Bookie

Thanks for your reply. I feel so alone with it all. It seemed that after I had the MRI, I was told the results (which I am very concerned about especially the bowel),then I was told I should have the mirena again and then I was sent on my way ! No further discussion and I was too numb after the results to think straight!

Thank you again

You are definitely not alone! I understand that scans do not always show up Endo; mine didn't and I had to have a laparoscopy which is the only thing that does!. I think you should ask about that too so you can find out where you have the Endo and possibly have some removed. X

Im of too to see my consultant, after a diaognistic lap wk ago. Hes sayin I too, should have total hyst, cyst stuck to pelvis, n endo stage 4 he thought before lap, but. Hes said its not as bad as he thought.but bowel adhesions are worse..so hel have a bowel surgeon on hand.im a little perplexed n overwhelmed tbh.. But glad that people on here give a mixture of remarks as my heads battered by science so to speak!!!..hes leaving it to me to make decision, as hes said I maybe ok to leave other ovary now!! Iv,no partner, horrible not being able to discuss with anyone!! But I do have a good consultant..which I know im lucky to have!! So worried about after affects.n unsure what to do..

Hi AlleyKatsz,

I know what you mean; it is such a hard decision to make. I sometimes wonder what the chances are of making things even worse in the long term by having such radical surgery as opposed to putting up with how things are now. To have a better chance of getting rid of Endo for good you have to have both ovaries removed but then have no HRT as that takes the place of them and will only continue to feed the Endo. Of course then there is the worry of possible bone problems through the sudden lack of natural hormones from the ovaries. I read that during and after menopause the ovaries still continue to release some hormones to help with the effects of old age so I really don't know what happens if you have none of this hormones! I suppose calcium supplements is one thing you can take.....The doctors have said that I will probably start a natural menopause in the next 4-5 years and as I have just decided to stop having hormone treatment for my Endo (was not doing much in the way of favours to be honest) I am wondering if I can go that long without any treatment when my old symptoms come back with a vengeance. I definitely think they will. Surgery v a possible 5 more years of Endo misery.....What to do???????

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Hysterectomy side effects

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