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Hughes Syndrome APS Forum

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Ablation didn't solve problem so I've been told I am to have full hysterectomy..... :(

loppylou68 profile image
7 Replies

Unfortunately the ablation has not had the desired affect so at my last visit with the gyne / surgeon he has said I will be having a full hysterectomy including ovaries and cervix......

My concern is that due to Aps HRT is not going to be an option so I would prefer to keep my ovaries.

Spoken to two Dr's who agree that should keep them...... I have already signed consent form so have I already signed my ovaries away....?!

Very worried about APS and hysterectomy has anyone else had this experience as need to hear of others stories and advice

I have already talked surgeon into laprascopic version and not sun roof version..

All advice very welcome

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loppylou68 profile image
loppylou68
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7 Replies
MaryF profile image
MaryFAdministrator

Hi, you can re do your consent form, no reason why not. It sounds like you are fully in charge of a very difficult situation to me. Keep us posted. MaryF

HollyHeski profile image
HollyHeskiAdministrator

Difficult decision! I had a laprascopic hysterectomy when I was 32, I like you decided to keep my overies, now not sure why.

I still had problems & had my overies out 10 years later.. Had to go cold turkey with hormones as HRT wasnt an option, the sweats were the worst! This lasted 6 mths, although intense (and there were other drugs given to me to help), my opinion it was better than going thru the menopause over years.

Now I look back, just glad its all over & glad I had both surgeries done.

This is different & personal to each of us, we can only learn from each othet.

I wish you well what ever you decide. Xx

loppylou68 profile image
loppylou68 in reply to HollyHeski

Thank you for your story this information is so important when your making desicions that you have to live with ;)

Ozchick profile image
Ozchick

I had Hysterectomy at 40 after 2 previous c/sections so had the full slice and dice using same scar and kept ovaries. Had complications after only 2 weeks and back in theatre due to complete bowel obstruction and had ovaries removed. This was way before my APS Dx (but looking back there were so many things pointing to APS but it was never mentioned) and I had HRT that didn't agree so seemed to have Menopause for years- although again, I think some of my symptoms were more related to APS than Menopause. I had trouble getting pregnant but I knew I had completed my family by the time I had to make decisions. Getting rid of the heavy bleeding was just the best thing as my iron stores were always low and you might find they pick up after the surgery. As is said everyone is different-you have to make the decision that sits right for you.

A person I worked with had her hyster done vaginally-no scars, kept ovaries but not cervix and said recovery was great and she has had no ongoing problems. Could be another option?

loppylou68 profile image
loppylou68

Thanks for the information really appreciate it ;)

murphylotte profile image
murphylotte

I had the ablation a week ago and hopefully with the result I wish for. May I ask what didn't work in your case since you are having the hysterectomy? I wanted this at first with the keep of my ovaries but the doctors said we should try this at first. I had it done because of pain in my uterus and they are not sure where it come from . Best of luck with your decision 😊

loppylou68 profile image
loppylou68

I had it due to pain and heaviness made worse by being on warfarin...month one I thought it was going to do the trick...Unfortunately months 2 and 3 etc...back as they were before requiring resulting in need for iron infusion.

I do hope yours is more successful I really didn't fancy having a hysterectomy either.....so fingers crossed for you

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