Albicat in reply to huhfimmie28 days ago

Thank you very much for replying, I really appreciate it. That's exactly what I thought and is why I have been avoiding oestrogen like the plague up until now. He got me all confused! Thank you for the link too. I will read that properly when I have more time. Wishing you all the best too 😊

Albicat in reply to Lindle28 days ago

Oh my goodness it sounds like you have been through an awful experience! I hope that things are better for you now.

My surgeon retired and this was the first time seeing this consultant. I really liked the fact that he actually listened to me and what my symptoms are (all related to menopause) but then he suggested that, which really threw me, as I was always under the impression that oestrogen would be a problem. Thank you so much for sharing your experience and the ESHRE guidlines with me, it really helps. It's slightly shocking that even at a BSGE centre they're giving the wrong advice! 😕

Avourneen in reply to Lindle28 days ago

Hi Lindle,

What can be done about this? I keep hearing of and reading about doctors giving women with endo oestrogen HRT. If they are doctors who know anything about endo why are they doing this? There are also lots of GPs now going on 3 or 4 day courses about prescibing HRT setting themslves up as menopause experts and handing out HRT like sweets. All the current media focus on the menopause just seems to suggest everyone needs HRT and it will be great. I went to a dermatologist a few years ago who was handing out bio identical hormones to women wanting more youthful skin.

Gynaecologists also seem to need to just do an incredibly short course of 12-15 hours to become a special menopause care practitioner. Do you think this could be the reason? The courses are too short and don't cover anything in depth?

Is there anything that endo groups can do to address this issue? I see quite a lot of endo activists on linked in but they mainly seem to go to imporant dinners and have selfies taken with people to raise awareness. Are there any endo groups that are actually doing anything about this? What can we do write to the GMC ?

I think this is a serious and growing issue but don't know how to help. Any suggetsions welcome.

Albicat in reply to Avourneen27 days ago

That is a great question Avoureen!

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Lindle in reply to AGI199428 days ago

Tibolone is a very complex drug and a synthetic steroid with estrogenic, progestogenic, and androgenic activity on the cell receptors and not without risks. In younger women it is considered around the same in terms of risks as combined HRT but risks increase with age, especially of stroke. It's actually banned in the USA.

AGI1994 in reply to Lindle28 days ago

I only mention it here as nobody else had mentioned it. I know what it is - I've been taking it for over 4 years. My endo specialist advised it as it has lower risk for reoccurrence of endo and stroke risk can be mitigated through weight management, exercise and a healthy diet. Of course, if he wants me to switch to something else when I'm older then I will do.

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Lindle in reply to AGI199427 days ago

I think you will be a rare case having your ovaries out at 28 as this would only apply to those with endo so severe that nothing else such as expert excisions has stopped the endo progressing. It does seem that younger women and adolescents are presenting with more progressive severe cases more often. But I think those reading do need to know the evidence based on the ESHRE guideline which advises continuous combined first before tibolone.

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AGI1994 in reply to Lindle27 days ago

Yes it was quite severe and I had tried literally everything. My specialist even let me stay on the Prostap injections for 4 years (with the Tibolone to protect my bones of course). The surgery was a final chance at a more normal life.

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Albicat in reply to Lindle27 days ago

Oh my word, this all messes with my head so much! The only other option I have been given was Tibolone, if my endo symptoms come back with the oestrogen only. Surely it's already too late then?! Combined has never even been mentioned to me at all. About a year ago I was given some Tibolone, in case I couldn't cope with the flushes any more, but the side effects keep putting me off.

Is there one combined that's better for endo than others? Do you by any chance have any brand names for those so that I could look into it please? I want to have all the information that I possibly can before I go back to the GP. The hospital have already discharged me, which is helpful.

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Lindle in reply to Albicat27 days ago

The progestin I see most is utrogestan with a combined oestradiol patch. Are you on Endorevisited as you can ask on there.

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Albicat in reply to Lindle27 days ago

Thanks so much Lindle. Yes I am on there (thanks for the reminder!) so I'll ask 😊

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Albicat in reply to AGI199427 days ago

Tibolone is the only other option I've been given. I actually have a packet here, in case I just can't cope any more. Each time I'm about to give in and have it I look at the side effects and it puts me off again, so it's great to hear that you've had a good experience with it, thank you. Unfortunately I'm a lot older than you so, with what Lindle has said, maybe it's still not a good option for me...

AGI1994 in reply to Albicat27 days ago

It's all so confusing and intimidating - I don't blame you for being dubious about trying it. I think everyone is so different I was amazed that it worked out well for me. Whenever I tried hormonal contraceptive pills years ago, the combined ones made me a vomit machine 😅 and most people get on alright with them! It's part of the reason why I want to stay on Tibolone as I'm afraid hormonal HRT will do the same.

Is there a menopause clinic in your area that you could potentially go to? I think you'd probs have to pay for an appointment but they're often much more knowledgeable than GPs, as they are doctors/ nurses who specialise in the menopause and HRT. Might be worth a Google?

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Albicat in reply to AGI199427 days ago

It really is confusing and intimidating isn't it?!! You're absolutely right about different things working for different people. I have had problems with hormone medication before too. One pill made me suicidal, out of no-where, so I'm always very wary of anything I put in my body these days. That's one reason why I've been trying to avoid HRT but it's definitely challenging, to say the least! Long may you and your body be happy with the Tibolone 😊

A menopause clinic might be a good idea thank you, I take a look.

Thank you for your replies x

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