HELP!!! just been put on waiting list for hysterectomy and need advice!!!!!!

[louise35]

Hello all, I've suffered from endometriosis for years and it has finally got to the stage where I am having a hysterectomy after trying all other remedies, pill, zoladex injections Mirena coil etc. I have asked for a partial hysterectomy as I dont feel ready to lose my ovaries and go into an immediate menopause (I am 36). The trouble is one of my ovaries is badly damaged by adhesions and does cause some pain so I have been told that they may not be able to save that ovary, fair enough I thought but when I said I wanted to keep my right ovary they tried to talk me out of it by saying that the single left over ovary could "get lost" in my abdomen and could be very hard to locate in the future. Personally I've never heard of this and I dont know if they are trying to get me to have everything out in one go as it would save them any future surgery. He was also harping on about the fact that I still may go through an early menopause with one ovary, I explained that I would accept this if it happened, at least it would happen in its own time rather then going for the op, having everything out them waking up in the menopause. I have also been told that they will take my cervix which I'm not thrilled about because I thought that losing your cervix can be a detriment to your sex life (not that I have much of one at the moment due to the pain, but I am hoping to kickstart it off when I feel better after surgery). The consultant tried to sway me to have my cervix taken out and started going through all the stuff about still having to have smears and being at risk of cervical cancer. The problem with all this is that 6 months ago when I saw a different consultant he practically encouraged me to have the operation done and said that it would not be any problem to keep my ovaries as I was still too young to lose them. I really dont know who's telling me the truth and am now totally confused. I would be grateful to hear the pros and cons from anyone who has had partial/total hysterectomy, I would like to know what other women have experienced so I can be a little better informed. Sorry about the rant but I am totally confused now, I walked into the hospital feeling very positive and walked out again feeling deflated and feeling that I was "being an awkward patient"

I have no idea - could you ask for a second opinion?

women's health concern have a helpline - here but it sounds like you may need to see another gynae just to get his/her opinion iyswim

BUMP

A good friend of mine had a hysterectomy due to an abnormal smear, They left her ovaries, but used the ligaments that normally attach to the womb to hold the top of her vagina in place IYSWIM. She has two kids, and did not want more, so was not bothered at all. Removing the cervix has had no detrimental effect on her sex life (apparently).. I have not enquired further.....HTh dinner burning, must dash!

Bump for you.

Sorry, that should read the ligaments that attach the ovaries to the top of her womb, to hold up the vagina, once they had taken the womb & cervix away. She was lucky that it was very straight forward and had a suction op so they didn't have to open her up. They did it all by magic as far as I can tell. I was most impressed that she e-mailed us from her bed hours after the op (and this was NHS). From her experience, and I can't talk personally, I would remove the cervix as you are then out of the loop for smears and associated worries. However, hers was an abnormal smear to start with. They couldn't get to the cells that counted, so if she hadn't gone for the cevical removal she would have been left with the cancer worry for the next 10 years of smears...as it was they did a biopsy and she was borderline and so made the right decision.

I think you need to talk to more people who know. There is a hysterectomy website with a forum where you can chat to people in the same position - I don't know the website, but it should be fairly easy to google...

Good luck!

louise35

You are not an awkward patient at all.

I would talk with Endometriosis UK - their web address is www.endo.org.uk. They have both a very good website (some of the ladies on there are very knowledgeable re hysterectomy in relation to endo) and a helpline number you can call.

I have heard of what you describe; the left ovary could well get "lost" in the abdomen.

The following is taken from the NES publication "Endo and fibroids":-
In younger women the ovaries are retained where possible to prevent an easrly menopause. They can safely be left inside if the hyst is performed for fibroids, but some women go on to develop ovarian pain from residual ovary syndrome , or cyclical premenstrual syndrome.

Between one and five percent of women whose ovaries are conserved will need surgery in the future to have them removed.

If you have endo, your ovaries must be removed during hyst, otherwise any residual peritoneal endometrical implants will remain active. If ovaries are retained, 13% of women will have a recurrence of endo within 3 years, and 40% after 5 years. The more severe the endo, the more likely it is to recur. Also you will have to wait six months for any remaining lesions to wither away before starting HRT.

It goes without saying that you need to discuss all the above at some length with the cons before going ahead. I would certainly also call the Endometriosis UK helpline number.

louise, attila's advice sounds very good.

my friend is having a partial hysterectomy next week (fibroids), keeping ovaries, cervix removed. if you like i can ask her questions about how it all goes.

Thank you all for yor helpful comments, fishie that would be a great help if you could ask your friend how she goes, I think its better that I get advice from the women who have actually experienced this rather than trying to get through to a male doctor who could not possibly have any idea what it must be like.