After a hysterectomy Instead of HRT w... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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After a hysterectomy Instead of HRT what alternatives are there for us with APS?!


I'm having a full hysterectomy this week and have started day 2 of the bridging protocol.

Besides being apprehensive about the whole thing, I am worried that GP / Gyne / Aps specialist all tell you conflicting things.

Keep ovaries! Don't keep ovaries! You have to have your ovaries out...You'll find out on the day etc...

Thats bad enough, but after, the fact that those with APS CANNOT have HRT!?!?!

What do we do?

What can we do so that the day we loose those ovaries we don't gain a beard and 2O stone and become hormonal serial killers...

I would appreciate all idea's

40 Replies

I had a hysterectomy when I was 32, prior to being diagnosed with APS. Now looking back symptoms were related to APS, thèy left the ovaries. 10 years later I had to have the ovaries removed, knew I had APS then, wished it had been done at the same time, easy to say in hindsight!. They tested me & said I had already gone thru menopause - they were wrong. As you say we cant have HRT, had to go cold turkey with symptoms for about 6 mths. They did give me suitable drugs for APS to help with flushes etc. Horible time but 6mths intense symtoms were better than mild symptoms for years!

Nobody can advise you, only tell you how they coped, we are all different. Good luck with your surgery & keep us in touch! xxxx

Thanks hollyheski your a 🌟 star xxx

46 and been told possibly won't have to go through the change? Or need to have hysterectomy but your post made me laugh thinking were all gonna be the bearded ladies at the circus. I hope you manage ok let us know. And take care xx

loppylou68 in reply to molly1969

😁 will do x

I too have APS and have been having INTENSE pain the week of my cycle and am taking Vicodin and Celebrex. I've had an ablation done and a tubal ligation. Doc wants to keep my ovaries in as long as possible. I was given a Depo Lupron injection a few times in the past to "manage" things. It effectively shuts down your ovarian function and as a result can trigger menopause symptoms. To manage those symptoms I was put on a low dose of the birth control pill Norethindrone. Lately, docs have been thinking I have endometriosis but ultrasound does not confirm that.

LoopyLou- Please let us know what the docs decide. I'm in a similar boat.

Holly- what were the suitable drugs they put you on?

loppylou68 in reply to Holley

Will do....

I to have struggled along on dodgy medications for year's ones I now know I should not of been taking with APS due to clot and stroke risks.

I also had a fibroid op, merina coil for 3 years then suffered the merina crash upon its removal then an ablation even before getting to this point.. So i know I'm not looking forward to recovery period.

Thank you for your story and I will keep you updated as I know alot of us go through the same thing and it's good to hear all the variations

Take care


Brilliant response thank you

It's good to know we do have choices

I really appreciate your post


My wife had hysterectomy and does not take any hormones. She battled cancer and wasn't interested. She also has a blood disease (not hughes) and it is also a clotting issue. Besides hot flashes she's does alright.

Thank you comrade

Have you had a look at bioidentical replacement therapy, worth checking .

Well thats a new one will look into it

Thank you so much

Bio identical has estrogen, testosterone and progesterone, I took them for twelve years and that apparently flared the APS and I had to stop abruptly it's been three years and the symptoms get better but a Female doctor at Mayo put me on low dose Gabapentin and that has made a difference, good luck😊

Thanks edgewater x

Just had an appointment with my local Aps consultant and he's never heard of it before

So I will keep on investigating

Hi, I have Hughes and have been on HRT, but it didn't really agree with me. Professor Hughes recommended Just Estrogen but my Dr would only put me on combined. Can someone please explain why we can't take it.

loppylou68 in reply to Jolevans

Very good question.....

Hope your doctor gives a good reason for why he feels both hormones outway the single hormone version.....

We seem to be raising more questions than answers lol

Will look into it Thank you for responding

I was put on folic acid the minute I had first stroke to keep bones strong. I don't understand why we are all on so many different treatments? I too was put on merina coil to sustain heavy bleeding. I don't think I have had a period in a year or so. Best thing they ever did. My fallopian tubes,have been collapsing for years. And didn't get kids

loppylou68 in reply to molly1969

Sorry Molly what a nightmare

I didn't have a period for 3 years with the coil....the issue comes when it's removed..and not replaced with another....hence it's called the mirina crash and it lasted about 6 months...I thought I was going to die....

Good luck 🍀 x

molly1969 in reply to loppylou68

That's horrible! As if we don't have enough going on. We're all here for you. Private message if you just need a good moan. We all need one x

loppylou68 in reply to molly1969

Your a star 🌟 fingers crossed and thanks xxx


Increases the risk of blood clots, so to us its double trouble!

Yes APS consultant confirmed today that his advise is not to use HRT and do a wait and watch...

but to supplement diet with sage pastels!?!? or things containing phytooestrogens

Sage can be taken in any form.?!

Only if life become unbearable will HRT be on the table again

Lou x

I too had a hysterectomy 10 years ago before I knew I had aps......I have been on hrt patches for 10 years now with no adverse affects....I have had tias and was stopped taking it for two months and then returned to it.....I have to say that I take a lower dose then prescribed....2 patches a week....I find I can get by on 1 patch every 10 days or so and then don't put one on for a few days.....I do enough to keep symtoms at bay. As apsnotfab says this is a personal decision and for me at the moment it works. I have several autoimmune conditions and need to have some life rather than a million symtoms!

loppylou68 in reply to cami

Thank you cami

What you have described is just what the consultant said today

Thanks again


Sorry to hear about your surgery, hope all goes well. I had to have a hysterectomy and ovaries removed some 10 years ago at the age of 40 and like you I was concerned. My advice is to use a HRT pessery it really helps and the good thing is that you are forced through the dreadful menopause and in my case it only lasted 3 months.

Good luck.

loppylou68 in reply to Whitj

Thanks for the advise whit


I had a hysterectomy just over 3 months ago, having gone through the alternatives you list - Mirena coil, etc - for uncontrollable bleeding. This was put down to my response to perimenopause plus being on Warfarin. So the key thing to remove was my uterus and the surgeon was also adamant that she wanted to take the cervix too, rather than risk continuing issues and having to operate for a second time. From your post it seems like you also might have a choice re your ovaries, rather than it being a medical necessity, so it may be of some use to hear how I went about deciding what to do.

In my own case, I was confronted by different opinions. I was in and out of the gynae ward in the months before my op and each duty consultant expressed their view. It panned out thus: female gynaes seen: 2 - happy for me to keep my ovaries, if I felt strongly about it, although one pointed out that I would be maintaining my risk of ovarian cancer; older or foreign-trained male gynaes - get 'em out! 'No woman over 40 requires her ovaries!' opined a very jolly Nigerian chap; younger male gynaes - on the fence. So I was left none the wiser on the basis of those conversations. Except that my surgeon felt it should be ok for me to go onto HRT provided my INR was very carefully monitored. And the haematologist, also a woman, agreed that she would consider that an acceptable risk in my case.

Then I spoke to a few women who have had hysterectomies and who had the option re their ovaries. All had wanted to keep them and felt happy with that choice, bar one - a nurse who wished she'd just had it all done and dusted, in retrospect. But these choices seemed to have been made on the basis of not a lot of hard evidence - again, different consultants had had different views.

Eventually I concluded that I didn't wish to go through a sudden menopause and that I didn't, at present, want to take oestrogen. The only thing that made me pause for thought really was ovarian cancer. As far as I know I'm not at any higher risk than your 'average' woman. But I decided, on balance, that I would be happier keeping than having rid of. I didn't have to sign on the dotted line until an hour or so before the op, with the surgeon coming round with my consent form and going over the options again; standard procedure I believe - but by that point I firmly knew what I wanted.

Hope your op goes well.

Thanks Mrs mouse 🐭 I'm sure I've had the same conversations and met the same people 😁

I have decided the same as you. For the same reasons

I will be fighting to keep my ovaries against my operating gynes wishes.

So Thursday morning at that point he comes around for the signature I'm expecting another show down.....

Let's see what I wake up with

Lou xxx

Wishing you the very best, and your ovaries!


Hi, hormones really do drive some of us mad, I know I have a flare every time something goes on.... The only time I ever felt well even with blood clots, severe infections and quite awful episodes going on, was when pregnant and full of Fragmin!!! I am on natural progesterone cream, but this is under guidance and I am well read on this, and it behaves far differently to it's synthetic cousins!!! I hope you find the answer, and I agree, no beards, I know the hipsters have them, but I have opted not to have that currently! MaryF

loppylou68 in reply to MaryF

😁 Thanks Mary lol,

yes my flares are very hormone driven to 😁 even more food for thought....

Lou x

Brilliant update I will look into it Thank you so much

Exactly but by Thursday my gyne will reiterate his view... Which is they are going 'out,out!!!!! With a unknowledgable You can take HRT after.?..

This build up and uncertainty is palpable

My inr is 1.5 the lowest it's been for a year so feeling iffy so glad I'm self testing at least I have knowledge which gives an element of control

Off to give myself another fragmin injection 💉

Thank you ladies your wisdom and advise is helping no end I am very grateful

Lou xxx

Hi Lou

Best wishes for the op this week. Every woman is different just as already been said on here.

I had a hysterectomy with my ovaries out about 2 1/2 years ago now. I was given so little advice at the time - it was disgusting. I am in the UK and I never actually saw a doctor from GP referral to operation day until I was signing the consent form going down to theatre . . . and that was just a locum. I was referred by a nurse and promised that I would have the opportunity to speak to the named consultant on the morning of the op . . . I couldn't as he was operating at the local BMI private hospital that morning (funnily enough on the m-i-l of someone I went to the gym with!). I had full abdominal surgery - is this the norm now on the NHS? There was some confusion as the surgeon tried to do it laparoscopically even though I'd been told this was not going to be possible beforehand - a few extra scars on the belly as a result plus severe shoulder pain afterwards!

I had no idea what would happen to me - I have APS but am only on aspirin. I was advised that I could just watch and wait regarding symptoms and HRT post-op. That being said I recovered remarkably well and apart from a few hot flushes in the first few months I have had no noticeable menopausal symptoms at all. I don't take any HRT at all.

I would make everything extremely clear to everyone you deal with at the hospital - I probably should have complained but I am now so cynical that I think it would have just been swept under the carpet.

Hope it all goes well for you and you heal up quickly x

loppylou68 in reply to SjogiBear

Hi soji bear

Thank you for your experience and I appreciate your best wishes

It is 🍀 lucky that you had such a good recovery and it seems just as well life seems to make us all cynical

Had a call this morning that due to an infection that my operation has been cancelled i am to high risk to take a chance blah blah blah.....await a new date and sorry that they made me come off my warfarin from 5 to 1.3 in the last week....

I'm flabbergasted disappointed angry hot and fed up

I have to still inject fragmin twice a day and take warfarin till next week doing the bridging protocol put me at high risk and God knows when a new date will come through were the whole process can start again

Luckily I am better informed thanks to those ladies of this group

Off to sulk in front of a fan somewhere

Lou xxx

SjogiBear in reply to loppylou68

How annoying for you! Hope you haven't got any symptoms due to having to mess about with your meds. Mind you on the plus side hospital in this heat would be unbearable! Hope you get another date through quickly x

loppylou68 in reply to SjogiBear

😁 xxx


How frustrating, hope you get another date soon. Keep hydrated as well. xxxx

Xxxx 💗

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