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[SarahJayne]

So, yesterday I started Tibolone. I chose this one for many reasons, but primarily because of the 3 main benefits of it, I suffer with low mood, flushes and low libido, not forgetting lack of energy, no joy left in the world, everything is dry etc etc. I also don’t tolerate progesterone well at all.

But about to pop my 2nd pill today and I’m wracked with real anxiety about it. And I’m trying to work out why.

Made the mistake of googling Tibolone- I know, I know, never Google. But I wanted to be well informed. I also read through most of the threads on here.

I guess what started my concern was that my GP surgery don’t prescribe it, I had a bit of a battle and next day GP prescribed it. I know it has a different make up than the more natural HRT. My sister in law- a nurse- thinks it’s in part down to pill versus cream/ gel and also that a lot of their information is out of date (the WHI study from 2002).

I suppose this post is also about the negativity in the press surrounding HRT. One newspaper had the headlines that Tibolone ‘doubles your risk of strokes’- yeah, it does, from about 2 to 4 per 1000. Obviously that’s catastrophic for the sufferer, and not wanting to be brutal or unsympathetic, but is some perspective needed?

So why the negativity towards HRT. Are us women meant to suffer in silence? Why so much scaremongering?

I’ve taken today’s pill because within a couple of hours yesterday I was bouncing around the house- placebo effect or genuine reaction to the pill, who knows?
But today, I’m panicking I’m going to drop down from a stroke (I’m 55 and have a BP of 112/72).

Are we predisposed to suffer in silence, or is it the negativity surrounding HRT that causes this anxiety? Or maybe I’m just overthinking it all and should sit back and enjoy the ride?

Anyone else felt this anxiety by taking HRT? Is it really as problematic as some sectors make out?  I do feel that maybe I shouldn’t be risking my health long term, but some of the symptoms of meno make life pretty miserable and can equally cause long term health problems- osteoporosis and heart problems.

Sorry, this is a bit of a waffle, but I’m genuinely curious what other people feel about HRT.

[sheila99]

You're a woman, of course you're supposed to put up and shut up  . Whilst every medication carries some risk so does not taking hrt, osteoporosis isn't much fun either. They suggest tibolone is ok up 60 when the age related risk becomes higher but for those who can't tolerate any other forms of progestogen it can be a good option. Don't underestimate the ignorance of the medical profession when it comes to hrt, there is far more knowledge on this forum than my GP surgery.
  The decision was an easy one for me as life without it was hardly worth living, if you have few symptoms perhaps the risk to benefit equation is different. My anxiety was caused by oestrogen deficiency, it's gone completely now.

[CLKD]

I was the same with The Pill as I hate trying to swallow anything. I would sit for hours with it in my hand 

What's the worse that could happen?  Why suffer if the regime works?  We shouldn't have to fight for any medication ...........

When did U last have a full blood count to include thyroid function and VitD levels as both these can cause a lack of energy.  4 me little VitD left me unable to move for hours  .  I began to think that I had something terminal.  If I do GOOGLE it's to NHS sites.

We don't have ladies here who either don't require replacement or who get on with it.  Let us know how you get on!

[bombsh3ll]

The fear mongering around all types of hormone therapy is political rather than clinical, it is rooted in misogyny and the belief that women's health and quality of life are of such low value that no degree of risk, however small is worth tolerating.

You are correct that the stroke risk with tibolone is numerically minuscule (0.3 percent) and was only actually seen over the age of 60.

Many of these individuals would have existing risk factors for stroke for example obesity, smoking or hypertension.

The birth control pill has far greater risks (still minuscule and I take it) but these are deemed medically acceptable as it potentially enables a male partner to get their end away.

I would turn it on its head and ask what are the risks of NOT taking any form of hormone therapy. These can include but are not limited to osteoporosis, reduced quality and length of life - women on HRT live about 3-4 years longer, accelerated physical and functional decline, unfavorable metabolic and body composition changes etc...

Sadly many women have been drip fed and internalised the toxic narrative that replacing our ovarian hormones is weak, vain, frivolous, unnatural or a luxury that we don't really deserve, and we should just pull ourselves together and power through. Take an antidepressant if you really can't cope. Oh and by the way, you know it causes breast cancer right?

Tibolone actually has a SERM like activity on breast tissue, being associated with a LOWER risk of breast cancer.

[CLKD]

 

[SarahJayne]

Thank you ladies. You are all absolutely correct.

Attitudes towards HRT seem to be outdated and deep seated in ‘women need to just put up with it type misogyny’. Imagine if men had to deal with it!

For me, the risks, will hopefully be significantly outweighed by the benefits.

Extremely low mood, compounded by the death of my Dad, leaves me verging on well, I’m sure some of you know. Loss of intimacy cannot be overstated, at a time when anxiety and lack of self worth takes over, intimacy with a loved one is so important and yet we are robbed of that too.

Apparently, tibolone can potentially reduce the risk of bowel cancer as well as new breast cancer. It settles in the brain, alleviating brain fog and hot flushes, the bones, alleviating osteoporosis and the vagina.

Having done quite a lot of reading of research papers etc, I find it strange that it isn’t more routinely used. It would seem that lack of interest/ knowledge/ outdated views/ pill v gel debate, seems to pervade some GP surgeries. Our surgery lost its sexual health/ meno GP a year ago when she retired and it is all the poorer for it.

So, I’m going to embrace tibolone for now, give it 3-6 months and see how I get on.

Thank you all for replying and saying what I already knew but needed a little confidence to do it.

[Mary G]

I would turn it on its head and ask what are the risks of NOT taking any form of hormone therapy. These can include but are not limited to osteoporosis, reduced quality and length of life - women on HRT live about 3-4 years longer, accelerated physical and functional decline, unfavorable metabolic and body composition changes etc...

Sadly many women have been drip fed and internalised the toxic narrative that replacing our ovarian hormones is weak, vain, frivolous, unnatural or a luxury that we don't really deserve, and we should just pull ourselves together and power through. Take an antidepressant if you really can't cope. Oh and by the way, you know it causes breast cancer right?

Spot on bomb.

There is a very weird attitude surrounding HRT and I'm surprised how aggressively anti HRT some women are and how they seem to be so against it in principle.  It's almost like they are really scared of it.

It sometimes feels like the medical profession actually want HRT to be dangerous judging by the way they cling to two outdated and deeply flawed studies like the proverbial to a blanket.  The people who conducted those studies should have been struck off frankly because they are responsible for destroying the lives of millions of women who were forced off HRT and they also set HRT development back years.  It's scandalous.  Imagine how you would feel if you had been forced off HRT in the early 2000s and now find you have osteoporosis.  I remember the Scottish HRT documentary with Kirsty Wark when it was revealed that following a hysterectomy, she had briefly used oestrogen patches and then been scared off them because of those dangerously bad and destructive HRT studies.  She had a DEXA scan during the programme and lo and behold, she's got osteopenia. 

It never ceases to amaze me how women are left to suffer debilitating menopause symptoms and how so many doctors just sit in front of them (or at the other end of a phone), refuse to prescribe HRT and leave them to rot.  You have to question the doctor's integrity in cases like that.  A lot of women have to stop working because their symptoms are so severe.

Sarah Jayne, take the tibolone and hopefully you won't look back.  It's not dangerous and you will no doubt benefit from it.

[SarahJayne]

Bombsh3ll and Mary- You are spot on.

I go to an aqua aerobics class and naturally as we’re all women, mainly of a certain age, talk usually turns to menopause etc and everything surrounding it. To ‘get through’ menopause without HRT seems to be seen as a badge of honour by some, I liken it to natural childbirth.

You know what, if you need it, take it. If you don’t, great. Same with pain relief in childbirth. There is no need for a stiff upper lid and suffering in silence.
Us women seem to have enough battles with GP’s and health care without negativity from within. Women are in this together and the support on this site is immense and immeasurable, regardless of one’s choices!

Look at me go, two days ago I was scared to take a small pill- today I’m ready to take on the world!😂 Maybe it’s the Tibolone???😉

[Mary G]

Sarah Jayne, I have a word of caution for your friends who think they have got through the menopause OK without HRT.  How can they possibly know?  They might have got through the first phase of the menopause without HRT but they could easily end up with osteoporosis, dreadful bladder issues or cardiovascular disease.

The problem is women develop conditions post menopause that they don't necessarily associate with oestrogen deficiency.  Years ago, my partner's grandmother told me how she sailed through the menopause without any problems and then went on to list a whole host of menopause related conditions she suffered with post menopause.  She once told me how she used to have to run home from the station after work because she thought she was going to wet herself.  She had a dreadful prolapse and bladder problems in her late 50s.

My sister is terrified of the menopause and has only just opened up about it.  She's 58 and has osteopenia because she has never taken HRT but the point is, she thought she sailed through the menopause without any problems.  Conversely, I'm 64, have taken HRT for nearly 20 years and have the bone density of a 30 year old and my last DEXA late last year scan showed an actual increase in bone density.  A lot of women don't realise just how quickly bone density diminishes immediately post menopause.  An alarming number of my sister's friends who are a similar age to her have osteoporosis or osteopenia and they are taking medication with horrendous side effects.

Good luck with the tibolone and I hope women reading this feel reassured about using HRT because it's safe and it works.