I have very severe endometriosis and adenomyosis and am awaiting surgery which will likely involve having a stoma.
I’ve previously had left ovary removed and both tubes and I’ve recently been told my right ovary is failing.
Unfortunately there was been little improvement to my Endometriosis even with menopause level blood readings. I can’t say I’ve noticed many menopause symptoms other than very irregular periods.
I’m still flaring almost every afternoon and evening. Bowel pain excruciating.
My consultant has prescribed me Tibilone HRT. I haven’t yet taken it, I’m afraid to having read all sorts of bad things about it. Weight gain, facial hair, acne, mood swings.
All things I’d prefer to avoid.
Has anyone else any experience of Tibilone?
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Lily1986
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I'm on tibolone alongside zoladex, and I haven't had any of those side effects. The only side effects I'm having is a few hot flushes here and there from the zoladex x
This sounds very similar to my experience 12 years ago. I had to have both ovaries removed and an abdominal hysterectomy due to stage 4 endo. I don't have a stoma because they decided not to remove the endo which fuses my cervix to the bowel. I also had adenomyosis and fibroids. Of course, after the hysterectomy these ceased to be an issue.
I eventually went on to tibolone after having lots of problems with oestrogen based hrt. This was the only one which didn't flare up my endo.
Yes I gained a few pounds - but literally just that - whereas with other HRT I put on about 9 pounds.
I am at high risk of osteoporosis so this was the only reason I agreed to hrt. I had already gone through surgical menopause by the time they found a suitable hrt so I didn't benefit from reduced symptoms.
I was put on just 2.5mg and refused to take more. I went on it only for 5 years and came off at 53. Of course I don't know how young you are as this will impact the length of time you are on the hrt.
Being on hrt kept my hair from going gray and thinning, kept my skin healthier and younger, reduced vaginitis which was painful.
I'm now off HRT. I cannot say there are any benefits to that except my hrt got messed up when my doctors removed it from my repeats so I missed taking it for 3 weeks until the issue was resolved. As a result, when I went back on it my endo was triggered which then caused a lupus flare up which is currently my most problematic health issue.
I really hope you come to a conclusion that works for you. Whatever you decide, ensure you take VitD3. I take over the recommended UK amount as it is much higher in other sunnier countries. I take 2000mg a day to keep up my energy and according to my bloods my calcium levels are normal. Again, you need to work out what is right for you.
Finally, you know your body best and what you are willing to live with.
Aw thank you so much for this, it’s very reassuring and I’m going to start taking it. It’s at least worth a try, at least in tablet form I can stop it if it doesn’t agree with me.
I’m 37 so definitely need some protection for bones and heart.
That’s interesting they left your cervix and bowel attached. This is where part of mine is also attached too. Has the damaged bowel caused you additional problems? I’d prefer to keep mine to be honest, I’m just finding I’m getting a lot of digestion problems due to the very scarred intestines.
I will order some of the Vitamin D you mentioned too.
I’m so sorry the HRT has made your endo flare again plus Lupus as well, you’ve got a lot to deal with.
Thank you very much, your message as encouraged me to try it. Best wishes to you ❤️
I’m really glad to chat with you. So few people get endo this bad and all of our journeys are so different.
I had the top gynae in the uk who made this decision in 2012. Medicine will have moved on since then so perhaps your advice is right for you? I do have digestive issues - basically IBS and chronic constipation which I manage with meds. I have to be on a strict diet as I struggle to digest wheat which has put me in hospital a couple of times.
Of course, I don’t know if this is directly linked or not. I also have 5 other autoimmune diseases which they are now linking to oestrogen levels as well - another good reason to keep your tibolone dose low if they’ll agree. One of the diseases is AIH which attacks the liver so this also contributes to my digestive issues, causing nausea, gastritis and other complications.
Honestly, some of us have to manage all of the obstacles in our way to getting on with life. Try to focus on what you are grateful for rather than sinking into the ‘why did this happen to me’ which from experience is easy to do. For me, it’s my step-children who I was fortunate to raise and my wonderful husband. Without him, I would have never been a mother which has been my biggest blessing in life and made up for the feeling I had to overcome of no longer being a woman - no ovaries and no hormones really affected my self-confidence, but again, I overcame it.
If you wish to chat as you are working through this I would be very happy to support you. I find it helps to have someone who has some idea of what you are going through as it isn’t just the physical aspects, it’s the isolation from womanhood too.
I buy my VitD3 from Costco as they are small and easy to take.
Thank you, I really appreciate that and have followed you so can keep in touch.
That is so similar to me, I can only eat a low fibre diet now as intestines can’t cope with fibre. Bread I realised made me feel awful so I stopped that a year ago.
Gosh that’s so much to deal with the auto immune conditions, especially the one involving the Liver. I hope you’re receiving a decent level of care from the health services for all of them.
You’re quite right about not dwelling on it too much. Some days are better than others I’ve struggled adjusting to being so much less active than I used to be. Up until 5 years ago I was travelling the world, working full time and going to festivals etc. Now I seem to spend 75% of time resting in bed. Although I’m very thankful for the memories as would hate to be like this now with nothing to look back on.
It’s really nice to speak with you as you say it is very rare to have the disease as severely as we do.
I've followed you too. Yeah I used to travel a lot too but have finally accepted there is actually more to life than living in the fast lane. Doing less on a daily basis means I do more on an annual basis. It sounds like you have far more pain than me so do what you need to manage it.
Thank you, I took my first one this morning which I probably wouldn’t have done had you not reassured me. Pain is awful most days. I really hope the next surgery provides some relief although the consultant has ensured I understand it won’t be a magic cure.
I hope it improves things. When I first joined here, I knew no one experiencing this level of endo. It does sadden me that after so many years they are no better at diagnosing earlier to prevent us getting to stage 4.
I have stage 4 endo that has attached my cervix to my bowel and left ovary and obliterated my POD. I'm 51 and they aren't keen on operating because of the risks to the bowel and possibility of a permanent stoma bag. I've got fibroids too and a large endometrioma on my left ovary. I'm not I'm too much pain as the endo doesn't seem to be active at the moment but I bleed heavily. I'm on zoladex which has shut it down. I'm on a very small amount of estrogen as I'm clearly very sensitive to it and I've increased my progesterone as I'm obviously estrogen dominant. I don't eat many grains as they make me feel ill and I don't drink alcohol as this makes everything inflamed. I take NAC and glutathione too alongside vitamin D and Vitamin K (you need both). Tiblone is VERY low HRT and it's synthetic. It will protect your bones but you'll most likely have other side effects of Chemical Menopause - don't forget there are around 34 different menopause symptoms x Good Luck xxx
Ah thank you. I’m sorry you also have it very severely. It’s a very cruel disease. I stopped drinking alcohol about 5 years ago, with the very rare exception of when there’s a special occasion.
That’s interesting about grains, I know bread definitely doesn’t agree with me but thought it maybe the yeast as yoghurt also upsets me too.
So this is apparently the real menopause at the age of 37, due to remaining ovary failing which must have happened very suddenly as not long ago my hormone levels were normal with very high estrogen. The symptoms so far haven’t been as bad as the nasty chemical menopause’s I’ve had in past.
I took the first Tibolone today, I’m in a lot of pain but usually am by the afternoon due to the bowel Endo and very damaged intestines.
Thank you very much for your message and advice I really appreciate it and I will be ordering the vitamins.
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