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[pastie supper]

I might have been jumping the gun a bit, but I emailed my GP last Friday saying I'm quitting hrt in the new year. I hope she lets me stay on oestrogel over Christmas and new year.

I just can't take any more progesterone. It's killing me, it's awful and my GP doesn't believe it's possible to be progesterone intolerant in menopause. She insists their medicines are low dose and don't affect women that way. She ought to read this forum, she suggested I read it!

When I was offered HRT I said I was scared to take it because it contains progesterone and I react really badly to that. She disagreed and started me on norethisterone as an example of the newer bioidentical types they use now. Then told me I couldn't be reacting and I had a complete meltdown and we fell out, quite politely, but frosty with each other, I was furious at the misinformation as well as having a horrible reaction, she took me off all HRT and told me I could stay on vagifem.

I asked to see a specialist and after a while that appointment got me started again on oestrogel with provera, utrogestan, then cyclogest.

I've tried swallowing it, stuck it into both other ways as well to see if that might be better, no, I get period pains, feel nausea, it cancels out the oestrogel so I wake in sweat on progesterone. I didn't even try the full dose of cyclogest, I'm traumatised from all the other trials, each time I've become suicidal, so I stopped cyclogest after five days of a half dose, taken rectally. I was crying uncontrollably for no reason except that.

So today I spent half an hour scrubbing the carpet in the bedroom, landing, stairs, hall and bathroom, after getting up flooding with blood and my hands couldn't hold it all on the way to the loo. At least I was showered by 6am, could have been useful when I was younger, lol.

The frustrating thing is the oestrogel works. I'm on three pumps and had a scan in August and my uterine lining is thin and smooth.

I stopped having hot flushes and night sweats while I'm on oestrogel alone.

So five days of half dose cyclogest and I'm bleeding heavily, why on earth do they want me to take 12 days of torture when five makes my lining completely shed?

PS My GP says there's no way she could prescribe me tridestra and only do this once in three months as that sounds dangerous for my womb lining to her.

[sheila99]

This is the recommended way but when I start bleeding before 12 days I stop the utro, I don't see the point in continuing once you're bleeding (assuming it's a proper flow). I'm continuing with sequi even though I'm probably meno now because of the side effects. If you take it for fewer days as long as you have a good bleed it's probably OK. You could arrange your own scan in, say, 6 months to check it. I think tridesta is for menopausal women and it sounds as though you're peri?

[Taz2]

Norethisterone was horrible for me and is known to give PMT type symptoms, mood swings, depression etc so that seems a weird one to start you on. I haven't read all of your post but I see from your first post that you are post meno so why do you have to have a bleed? I've probably missed a huge section of info by not reading everything. Sorry 

[CLKD]

Ring the surgery this morning and ask for a referral to a dedicated menopause clinic. I believe that with regular scans, some use a long cycle with a shorter progesterone part.  There are other progesterones.


Keep up with the vaginal atrophy treatment as this is a different symptom which can be eased with regular insertion of oestrogen replacement. 

[Mary G]

pastie, your doctor sounds terrible and completely clueless on HRT.

Norethisterone is synthetic, not bio identical and she should know that.

It sounds like you (or your doctor) are blowing up your regime with too much progesterone.  Have you ever tried to take 50mg progesterone?  That is a dose I find easy to tolerate.  100mg progesterone in one hit is completely out for me and I'm not even progesterone intolerant.

If you struggle with the progesterone component of HRT you need to go off piste, do your own thing and take a much lower dose and have regular transvaginally scans.  Not everyone needs to take a high dose of progesterone - I get good womb lining measurements with a very low dose and it sounds like you are very similar.

Have you thought about trying compounded progesterone at a lower dose?  If you can't tolerate any form of progesterone your only option is a hysterectomy.

[pastie supper]

I think tridesta is for menopausal women and it sounds as though you're peri?

Thank you, at my scan they told me I was definitely post meno, I had my LMP age 51 nearly 3 years ago, only bled with HRT since then.

Ring the surgery this morning and ask for a referral to a dedicated menopause clinic.

I did that, after many months of waiting, the dedicated NHS menopause clinic phoned and spoke to me, then sent a letter discharging me because I was asking for oestrogel and utrogestan at the time, to try out and they said any GP can prescribe that.
I tried to appeal the discharge and I can't, so my GP put me freshly on the waiting list again for the same clinic just this month. Apparently the wait is currently one year.

pastie, your doctor sounds terrible and completely clueless on HRT.

Norethisterone is synthetic, not bio identical and she should know that.

It sounds like you (or your doctor) are blowing up your regime with too much progesterone.  Have you ever tried to take 50mg progesterone?  That is a dose I find easy to tolerate.  100mg progesterone in one hit is completely out for me and I'm not even progesterone intolerant.

If you struggle with the progesterone component of HRT you need to go off piste, do your own thing and take a much lower dose and have regular transvaginally scans.  Not everyone needs to take a high dose of progesterone - I get good womb lining measurements with a very low dose and it sounds like you are very similar.

Have you thought about trying compounded progesterone at a lower dose?  If you can't tolerate any form of progesterone your only option is a hysterectomy.

Yes, it sounds like we react similarly. I have been told by everyone from the GP to the HRT specialist gynae who scanned me that I must take the minimum of twelve days at a minimum of 200mg whatever way I take it.
It seems completely unreasonable so I tried the Biovea cream progesterone at 40mg for 10 days but it wasn't enough to make me bleed after, I didn't get side effects so it's a shame it seemed like a dud all round.

I've only tried the prescriptions at half their minimum dose, 100mg, and that is recommended anyway by online doctors because I take it vaginally or rectally, depending on the local irritation it gives. Maybe I ought to give it another go at 50mg, I think it would make me bleed, it's easily done.

It's getting difficult to keep experimenting because I've told my husband a couple of times that this will be the very last time I try a progesterone, then I managed to get cyclogest by a miracle, my GP refused then changed her mind, so I took 100mg rectally Monday to Friday and went crazy again for a week, I only feel my mood has recovered today and this is Wednesday. It's awful, I couldn't live like that for half my life.

I asked for a uterine ablation years ago for heavy bleeding but my former GP was worse than the one I switched to and wouldn't even consider it.
Then I saw a podcast by Dr Susan Hardwick-Smith, she said after an ablation for heavy bleeding in her thirties, she can take unopposed oestrogen and she said she takes HRT as unopposed oestrogen while still having a womb.

That is something I'd love to do, but who would do it for me? I'm not a doctor with contacts! The NHS refused to, even in my thirties with extremely heavy bleeding after I'd finished my family, I was a prefect candidate for it then.

Noone in our family has ever had a hysterectomy and I've no polyps or fibroids or abnormalities whatsoever, just a nice thin post-meno lining, so it's not something I've ever thought about and I'm not sure I'd want it.

[Mary G]

pastie, I don't think you will get the help you need via the NHS.  Waiting for a year to see a specialist at the menopause clinic is a ridiculously long time to wait.  Most people have to work and try to hold a job down, it's completely unacceptable to leave them for a year without help.  That is why so many women seek help privately.

An ablation sounds like a good idea and I looked into myself at one point. You will still be told you need progesterone but you would be able to use much less and you will never bleed.  You would probably have to find a private special and I've no idea how much it would cost.

When you do eventually get to see the NHS menopause specialist, they will probably suggest a Mirena coil.

[pastie supper]

pastie, I don't think you will get the help you need via the NHS.  Waiting for a year to see a specialist at the menopause clinic is a ridiculously long time to wait.  Most people have to work and try to hold a job down, it's completely unacceptable to leave them for a year without help.  That is why so many women seek help privately.

An ablation sounds like a good idea and I looked into myself at one point. You will still be told you need progesterone but you would be able to use much less and you will never bleed.  You would probably have to find a private special and I've no idea how much it would cost.

When you do eventually get to see the NHS menopause specialist, they will probably suggest a Mirena coil.

Thank you Mary G, I discussed going private with my husband last night, he thinks I need to, so it's definitely an option.

The mirena coil was suggested, but I had a coil in my thirties and hated it. It wasn't the Mirena but very similar, I think they shared a patient leaflet back then, I felt awful on it.
My concern with the mirena is that I might not be able to remove it, if it is awful and I certainly wouldn't expect a doctor to put it in just for a trial period then remove it for me, the NHS hasn't got enough staff for that.
I've been told off for bothering them about menopause because I should realise it's not a disease. It's considered more of an inconvenience, like the "sit next to an open window" workplace policies imply.

My husband told me this morning that apart from the HRT crises I've been brilliant for the last few years, because we've had the cyclic crazy of my own cycle disappear from our lives. No more drama.

Before HRT I wrote a list of benefits vs detriments about my periods having stopped. The way I feel is very much improved, my libido increased, my skin and hair are incredibly clear and healthy looking, best they've been since I was a child.

The main problem was the sweating I had with hot flashes and night sweats, I'd be constantly changing my clothes and changing the full length towels I slept on and under in bed every night so the sheets weren't as wet. It's coming into winter, was -6C night before last outside and our house is a stack of sticks with dodgy insulation, it has me in fits of shivering getting up wet to run to the loo, by the time I get back to bed I just launch myself at my warm husband and he holds me until the extreme shivering calms then eases away until the next toilet trip of the night when I run the gauntlet again.

I'd already had a decade of no sleep, dry, but my thoughts wouldn't calm down. For that I had numerous lectures on sleep hygiene from GPs which were completely unnecessary, I'd read three books on the subject for goodness sake, but the doctors refused to prescribe anything at all during the entire decade I had insomnia. It was all through my forties so probably caused by perimenopause, I'd never heard of perimenopause or of insomnia being hormone related.
I think I was continually sent away because insomnia is considered normal in older women, but not in older men, when my husband had the briefest bout of insomnia, he phoned the GP and got temazepam straight away! Women are not well treated by the health service. I had to find my own insomnia medicine in the end, but I'll get a caution if I'm caught with it, lol.

[joziel]

pastie, I feel for you....

I would really recommend seeing a private meno specialist like the Newson Clinic doctors, just to check you really have explored all progesterone options before you give up the Oestrogel. (My dr there is Dr Olivia Jones and she's v good. I've seen a couple of others there I wouldn't rate so much... I got referred to her because I was quite a complex case - as it sounds like you are...!)

Other thoughts I have... Have you considered a Mirena coil? Some women do react to the progestin in that, but others really don't - because it mostly stays localised in the uterus and doesn't affect women systemically.

There is also desogestrel, which is approved to be used as contraception alongside HRT and is *probably* good at preventing uterine lining from building up although we don't have enough studies to know that for sure. (There was one study done with a small number of women, 15 women - which found it was fine. But that wasn't enough women to licence it properly as a HRT progestin, but in this kind of situation you could definitely give it a go and have an occasional scan to check.) (Desogestrel should be available OTC in pharmacies v soon, as contraception will be...)

[Mary G]

Pastie, that is terrible.  My mother started to suffer with insomnia aged 51 and never had a full night's sleep again.  It had a detrimental effect on her health and she went on to suffer with high blood pressure, prolapse, dodgy joints, two hip replacements, frozen shoulder, carpal tunnel you name it and it was all menopause related and symptoms like insomnia don't necessarily improve.  My mother would never do anything about it because she was a menopause denier.  Sadly, my younger sister is going exactly the same way.

My advice is continue with the Oestrogel while you look for a menopause specialist and find an alternative form of progesterone.  Even tiny amounts of Cyclogest will offer some protection while you search for an alternative.  Have a look my compounded hormones thread in the Alternative Therapies section on here, it might help.  You might need to consider a mix of products ie use an oral form of oestrogen/progesterone like low dose Femoston conti (it contains a well tolerated progesterone) with Oestrogel. 

Have you tried melatonin for sleep?

[pastie supper]

Thank you Joziel and MaryG, it's a relief to be taken seriously and believed properly, I wish my doctors would do that!

I don't know if I can go on exploring these progestogens any longer. I've had five progestogen trials this year. Utrogestan I've tried every which way and it's the best so far but they all had me feeling suicidal at some point and a sort of angry panic the rest of the time. It doesn't end straight away either, the feeling takes about five days to fully clear out of my system, then when I bleed I know that is the signal for the hell to end.

I'm normally, dare I say it, a very happy person. Our marriage is good, our kids are healthy, we have enough to live on. I had trauma in my young life, but I have as stress free life as is possible these days.

I've got my sleep sorted these days too. I don't know if I'm allowed to say what I vape in the evenings, but it completely allows a whole night's sleep, until of course I start taking progesterone. I'm totally wired on utrogestan, it is very energising both night and day, too stimulating for the mind, bringing up every negative thought in my head and making me fight with my husband.

When I tried cyclogest, half the dose rectally for five days then gave up, I had such intense feelings of absolute hatred towards my lovely husband that I told him I was going to be distant for the cyclogest trial, I said don't expect me to feel close, it's only temporary, I'll say nothing and feel far away, just let me be quiet for a few days.
He accepted what I said and I felt intense fury at everything for a few days, so much so that I literally couldn't speak because I was hiding it.
I didn't want him to know the level of fury and hatred that had suddenly taken me over. To say I'm not myself really doesn't come close to explaining the clear cut difference between those feelings that occupied me and my real feelings.
It sounds so crazy written down here, while on the surface I try to make it all look as if nothing is happening at all.

On the oral progestogens I had bad physical symptoms then mental changes partly from the resulting exhaustion.
On the vaginally and rectally taken ones it seemed to be mental changes directly, in under a week I'll become suicidal.

I just don't think I can do this any more and I'm not convinced that oestrogel feels better than tibolone. Tibolone is an anabolic steroid after all, not the dose that gets abused by men for ripped muscles, but a small dose for an older woman who otherwise can't build muscle at all. It's at least as good for preserving bones too and as I'm thin, I worry about my bones.

Thank you for your kind words, good luck going forward to all of us who don't fit in a medical box, yet. I keep seeing podcasts of female doctors who say, "I had learned about it, but I had no idea at all until I experienced it myself" and that gives me hope that doctors and research will move towards taking women's illnesses more seriously very soon.