Tibolone v combined HRT (oestrogen gel +p... - Endometriosis UK

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Tibolone v combined HRT (oestrogen gel +progestrone pill)

Hannah818 profile image
10 Replies

Hi allHope you're all OK

Going to speak to doctor again about HRT as Zoladex has definitely started menopause symptoms. Getting hot flushes atleast 15 times a day and during night and skin on my face has gone really dry , painful around my eyes and eye lids.

Not sure whether to ask for tiblone or whether to ask for the oestrogen gel with progesterone pill?

I've read about both but wasn't sure what pros and cons to both are and want to sound like I know what I'm talking about when I speak to gp, as have been fobbed off too many times in past two years by different medical professionals!

Do you use tibolone or combined hrt with gel and pill?

Have you tried both ways and found a preference?

Thank you in advance :)

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Hannah818
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635703 profile image
635703

with zolodex I had tibilone for side effects of injection. I have a Mirena for progesterone and now everol conto 50mgs for estrogen. As perimenopause symptoms increased. The Gyne prescribed that.

Hannah818 profile image
Hannah818 in reply to635703

Thank you for the reply, can I ask how long you had the zoladex with tibolone? Did you find I helped with endo and menopause symptoms?

635703 profile image
635703 in reply toHannah818

The longest straight run with zolodex and Tibilone was about 2 years. It made me feel so much better. Initially I was given zolodex without tibilone and that, for me, was awful. It settled down and made pain, bleeding stop. Had a laparoscopic excision of my Endo in ‘22 followed by a couple more monthly injections. Then the pelvic pain came back really bad with awful bleeding and so did the Endo. So have been on it again for a good while now. I had perimenopause symptoms and given everol conti 50mg patch and then the bleeding stopped. This was whilst on zolodex aswell. If it wasn’t for that, and the patch, things would have escalated pretty rapidly downhill.

Trying a hysterectomy with ovaries removed on Friday. My pain and symptoms could come back. But I will have skipped perimenopause and gone straight into menopause. I chose this.

I have IBD Crohns aswell. Both flared and had a hospital admission. Want to eliminate this happening again. The runs 20 times a day for 2 weeks made me feel like I was literally going to die. On top of the Endo pain. I had to be put in a wheelchair to get the urgent colonoscopy. Very very traumatic. 2 admissions with severe rectal bleeding. The last one I had to have a blood transfusion for and both via ambulance.

Crohns is stable. Endo pain under control with slow releasing morphine capsules, low dose. Not worked for 3 years now. Endo has even made me homeless. Absolutely horrendous disease.

Hope my ramblings help you 🫶🏻💞🫂

Hannah818 profile image
Hannah818 in reply to635703

That sounds awful, hope you are getting some help, sorry I had forgotten to reply, have brain fog since starting chemical menopause, sending you best wishes xx

Sunset-lady profile image
Sunset-lady

This depends on what you are on the zoladex for, how old you are and how well you tolerate synthetic progestin vs natural progesterone. Tibilone is not "real" HRT - you wouldn't ordinarily get tibilone from a GP if you went in and complained about natural peri menopause symptoms. It was designed to help bone mass reduction. It's synthetic and rather than provide estrogen, it stimulates estrogen receptors. This is great if you want to shrink fibroids and stop giving the body estrogen but not so effective for preventing chemical menopause symptoms. However, some women do very well on it, and it's hugely effective in helping the main problem of adenomyosis and fibroids. However, you have to be able to handle progestin and many women struggle with it. You can have the coil but, again, it's synthetic progestin which is very cdifferent to body identical progesterone made from yams. Many women are good on the coil, but a lot find that it makes them flat and depressed. With the coil you would take estrogen alongside it. Finally, you can take transdermal estrogen gel and progesterone utrogestan but you may not see the results you want. Normal HRT will make you feel good but it might not shrink fibroids and/or an endometrioma. Normal HRT may also make you bleed. You feel like you're choosing between your physical and mental health. It's hard because it's rough being on zoladex (I'm month 14) it has shrunk my fibroids and cervix and I am on proper HRT. I cannot tolerate synthetic progestin. So, it depends how long you are on it. For me, I had to take HRT and natural progesterone but some women manage really well on Tibilone. Try it and see xx

Hannah818 profile image
Hannah818 in reply toSunset-lady

Thank you, that's really interesting, I started the tibolone yesterday and today noticed a reduction in hot flashes and back pain , but not sure if it's totally down to that or other stuff I took last night when pain got bad! Will carry on and see what happens . Before getting endo diagnosis I was tye kind of person who hardly took a paracetamol and now I feel like I'm putting too many different pills and medicines into body! I like the thought of the transdermal HRT gel , seems more 'natural' option than swolling a pill. Might try that if tiblone doesn't work, especially after the actual hysterectomy and surgical menopause. You're right- I do feel I'm choosing between one hard choice and another! Part of me thinks what's the point of taking the zoladex if I'm counteracting it with hrt which might stimulate the endo.

Hope you are managing OK and having good days

Sunset-lady profile image
Sunset-lady in reply toHannah818

Yes, I struggled with exactly the same thoughts. It's completely counter intuitive to take something so huge as zoladex and then put back in the thing you are stopping. I kind of accepted it when I realised that I'm only putting a really small amount of hormones back compared to what my body was making x

You might find Arum Bloombergs book Oestrogen Matters informative and help you make your mind up. There's also a helpful recent podcast by Dr Louise Newson on Progesterone and how the different formats can help or hinder that should be considered in trying to g to decide which products are going to be the most effective for you. Not all progesterone products are equal especially if you are given progestins instead. Uttagestin is available via NHS and is natural progesterone can be taken orally or some use it vaginally instead . Not suitable if you have a peanut issue. I use cyclogest another natural progesterone also via NHS here prescribed off label as the Uttagestin and I weren't a good mix after using both orally and vaginally. Sometimes it's finding the right product combo. There are weighty arguments that Endo sufferers have a level of progesterone resistance, higher requirements or deficiencies and that progestins do not rectify the issue as progesterones do. Lots of us can struggle to find "the one" that ticks the box of healing instead of just suppression of symptoms. There's still a lot to be understood.

Hannah818 profile image
Hannah818 in reply toBloomingMarvellous

Thank you , will have a read on the weekend , still getting to grips on the basics of HRT and endo, it's like a minefield!

steep learning curves ! For Endo if you are struggling with that Heal Endo is a brilliant resource by Katie Edmonds 💕

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