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[Nas]

Ladies, I need your advice ( yet again)

So, my long episodes of pain, are caused by a somewhat large subserosal fibroid. My uterus is measuring the size of a 24 week pregnancy!! The beast has grown 2cm in 7 weeks. I have fluid in my lung.

Gynae tell me a hysterectomy is imminent. Please god let it be a full hysterectomy!

Now for the best bit… ready?  …drum roll… 🥁

She wants me OFF HRT IMMEDIATELY!!! What the hell??  How am I going to do that? Not taper slowly.. but off immediately ( for surgery ).

Please somehow tell me how to cope with this huge physical and psychological adjustment.

How am going to work until my op??

Despair.com 😩😩😩

[Gnatty]

Hi Nas. I can only give you my experience. Very similar to you though! I had a very large fibroid and had a hysterectomy and oophorectomy. I was already on HRT and at no time did my gynae tell me to stop it before my operation . That advice is surely outdated and was only relevant when we used to be given oral oestrogen in the form of Premarin. Transdermal does NOT increase risk of blood clots etc. If it were me I would get a second opinion xx

[Nas]

Thanks Gnatty,
I am on the patch, so don’t know  what the issue is? How am I going to get a second opinion? X

[Ayesha]

Ask the gynae if its really necessary for you to come off HRT immediately as you are frightened of the consequences.
I am assuming its not good to have fluid on the lungs and your HRT is obviously feeding the fibroid, the reason she wants you off it immediately.

You have been through hell but now looks like there is light at the end of the tunnel for you. Hope you don't have to wait too long for this op, Naz X

[SarahT]

Hey partner,
At last you are getting some proper action after all.you have been through. I just Googled ( I Know!) and the GPNotebook,  i.e advice for GPs themselves, definitely says ORAL hrt, just as Gnatty says.

I need a specific blood test next month from an endocrinologist ( hormone bits) that also states to come off oral contraceptives or oral hrt. Patches could continue.
Like you I am on patches,and also oral thyroxine, ( again hormone related. )  but to double check I phoned the hospital dept who confirmed I could continue with both. Can you ring the hospital dept who will undertake the hysterectomy?

Good luck towards some much needed relief 

[joziel]

The advice about coming off HRT is because ORAL estrogen increases the risk of blood clots. But TRANSDERMAL estrogen poses no increased risk. So there's no need to stop it before surgery.

If it were me, I'd just keep taking it and wouldn't tell them. I'm phrasing that so it's not advice. It's just what I'd do. Do you have a meno specialist you can speak to about this? You might feel more confident about doing it if you had another doctor's opinion to support you.

Also, you might still benefit from the utrogestan after the hysterectomy - some women find it helps a lot even if they don't need it when they don't have a uterus. If you have a history of any endo, it is also recommended after hysterectomy - in case there is endo outside the uterus somewhere.

[Gnatty]

Hi Nas, maybe have a look at the Balance website and do a search. I am pretty sure Louise Newson has produced a leaflet about this.

[Gnatty]

Regarding the utrogestan Joziel mentions, some of us are glad to see the back of it and others can't do without it ( post hysterectomy etc I mean). I do much better with it but only take it every other night. It depends how you find it now? If you hate it then you might be glad to no longer have to take it. The exception as already mentioned is if you have endometriosis but I think they would have mentioned it if they thought that was present as well as the fibroid x

[Jenna]

Hi Nas,

It could be because your gynae doesn’t want the fibroid to continue to grow, possibly making the op more difficult. Just a thought anyway.

[Nas]

You are probably right Jenna.
It’s such a difficult thing to have to do, when you’ve got to work/ drive/ deal with life admin etc.

I do have a menopause specialist joziel. She has officially discharged me, but always answers the odd email question.

I will double check Sarah, that’s all I can do I think. I feel it’s more to do with slowing down the growth, more than anything though.

Thanks all.
Onwards and upwards 💪

[Bexs]

Hi Nas,

I have no advice from personal experience. But, a friend of mine was on hrt patches. She started getting problems with pain and bleeding. She is late 50's and past menopause. She was sent for a TVS and told she has a fibroid that is calcifying and she had to stop hrt just like that. All her pain and bleeding have gone but she has her menopausal symptoms back. She is just getting through day by day.

Maybe they want you off it immediately so the fibroid doesn't grow anymore as I think the larger it is the more invasive surgery. I have also heard of people having to have injections and treatment to try and shrink their fibroids a bit before surgery and if this happens then it delays surgery whilst they wait for them to shrink. How big is your beast now?

Hopefully you won't be waiting long now. Good luck and take care,



Bex.

[Nas]

Thanks Bex
It is 8cm.
I honestly don’t know.
I hope they dont want to give me injections, that would just draw it all out even longer.

How is your friend getting on?

[Bexs]

Hi Nas

My friend is doing okay. Like I say she takes it day by day. I think sleeping is her biggest problem.

I am pleased you are getting somewhere with gynae. I am still waiting for my appointment even though my doctor expedited it 2 weeks ago due to my pretty much daily pain and bleeding. I did ring the hospital as per my doctor's advice as soon as they expedited it but got a right mouthful from the hospital saying it was their consultants decision whether I get seen sooner and not my doctor's!! I might ring again tomorrow now their strikes are over.

Take care.


Bexs.

[Penguin]

Nas I think I mentioned my friend before. Two years waiting and she is still not allowed to start hrt as they don't want her two large fibroids to grow any bigger. Do you know how long until the hysterectomy? She also had a few rounds of the injections to try and shrink them before the op, both times her op was cancelled. Not trying to be a downer but I do think you need to push hard for timescales, play every card you've got, even if it means going for choose and book with a different Trust if you can find one with shorter waiting lists.

I am so glad, however, that you finally know what has been causing you all this pain and that you have a path out of there - now I just want that path to be clear and quick for you xxx

[Penguin]

And my friend now, she is getting through it day by day. Very heavy and painful periods but she has good days and even weeks. You may surprise yourself at how well you cope even on a lower dose if it lessens the pain.