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[Lou44]

Hi I haven't been on here for years. Had fully hysterectomy and BSO in 2015. Still trying to find the perfect HRT, ha!

I'm thinking of giving Tibolone another go. I tried it back in 2016 but remember putting weight on and it didn't rid me of the muscle and joint flare ups and intolerance to exercise that have plagued me since the op. That said, no other HRT has done this either (I've done the lot, patches, gel, creams, Lenzetto, implants, Premarin, Tostran). What I do remember as positives were my hair improved, energy and libido improved and I'm thinking maybe I'll take those and put up with the weight gain. In terms of the exercise intolerance and pain, I've also been diagnosed with fibromyalgia and loosely with ME so will finally have to look at trying uther things to manage those symptoms.

Just wondering if any of you have had a similar experience/positive experience with Tibolone particularly those without ovaries and whether any if you take Tibolone with an extra bit of oestrogen added?

Many thanks.

[Hurdity]

Hi Lou44

Sorry to hear about your ongoing problems. Beware being fobbed off with ME/fibromyalgia diagnosis because this could simply mean that your hormones are out of whack, quite likely if you are still struggling to find the right combo.

If you have had these issues re joint pain and intolerance to exercise since your op then this does point to a hormonal cause.  What are you taking at the moment? Are you having regular blood tests including testosterone? How is your libido (a rough indicator of T levels). What about thyroid function? Underactive thyroid can ead to similar symptoms and can happen with women of menopausal age.

I don't know your age but also maybe you need higher oestrogen too?

I do know from what Ive read that it can sometimes be difficult finding the right horomonal balance after BSO so you have my sympathy and I di hope you will be able to find a solution.

As for Tibolone - the oestrogen component is quite low so depending on your age it might not be sufficient. Also it provides a progestogen component which you don't need but presumably won't do ay harm if you can tolerate it

Hurdity  x

[Wrensong]

Hello Lou44, sorry I can't help with Tibolone, but just to say I sympathise, as like you I am finding it difficult to get HRT to suit post-BSO.  I hope someone with relevant experience comes along to help you decide on next step.
Wx

[Lou44]

Hi Hurdity and Birdsong

Thanks so much for your replies, sorry I didn't get a notification of replies so have only just seen your messages!

Hurdity - yes I've kind of spent over 5 years thinking I just need to balance my HRT and I'll be fine but sadly on all levels and types of oestrogen and testosterone and with or without progesterone, I still have the same issues. I'm now thinking it's a bit of both - ME /fibro AND surgical meno. I had a lot of ops, general anaesthetics, IVF and stress pre op. However, I still want to try and find the best combo to feel OK on good days. Strangely, Premarin does this to some degree but the fatigue and weakness is worse and testosterone doesn't work with it because of the SHBG issue. I've started Tibolone and plan to try it with Lenzetto. All trial and error! Thanks, appreciate you replying.

Birdsong - sorry you're struggling too. What have you tried so far? What are you currently taking? I've got a good menopause specialist and she is saying even after all this time, not to give up and we can look at combinations and even doing it cyclically with breaks if necessary. I really wanted the Lenzetto and Androfeme to work as it's the best choice for safety, body identical etc. but it always feels that something is missing. I tried adding Utrogestan but the good effects never last. My specialist did say that the group of her patients that struggle long term are always the ones in surgical meno and often with a history of endometriosis 😕 Is there an active thread on here for surgical menopause ladies?

[Wrensong]

Hi Lou44 - bit more info in answer to your qs.

Like you, I have other chronic conditions that complicate the picture.  Was postmenopause & on HRT before BSO.  Some of the already longstanding symptoms were made worse by oophorectomy.  Uterus intact so I still need prog.  I use both systemic & topical HRT, but have yet to find a really good fit.  Progesterone in any form makes me feel rotten & Utrogestan is intolerable.

What have you tried so far?

   This is over 4+ years with a long break in between . . .

Systemic: FemSeven Sequi, Evorel Conti, Femoston Conti, oestradiol patches (various doses & brands) oestradiol gel (Oestrogel/Sandrena), Utrogestan (orally & pv), Norethisterone tabs, MPA tabs, compounded progesterone lozenges, Testogel. 

Topical: Vagifem, Ovestin, Estriol 0.01% cream.

What are you currently taking?

  Estradot, MPA, Testogel, Vagifem, Estriol 0.01%.

Is there an active thread on here for surgical menopause ladies?

  Not that I know of, but I sometimes go weeks without logging on so I may have missed it.  Have you looked at the very comprehensive American Surmeno site?

https://surmeno.blogspot.com

[Lou44]

Hi Wrensong

Thanks for your replies. It's certainly hard to figure out.

I hope you find something that works. I have been on that Surmeno site, very informative.

I'm over a week into Tibolone and OK so far. Rubbish today but think it's more fibro stuff. Some days it's hard to Knowle if it's fluctuations or fibromyalgia.

[Wrensong]

Hi Lou44, glad you found the Surmeno site informative .

Ooh, fingers crossed for the Tibolone then.  Agreed - can be a pretty muddy picture with other chronic systemic conditions .

Hope you find Tibolone suits you better this time.  Good luck with it.