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[joziel]

Jinny, I think you would really benefit from working with a menopause specialist in a private clinic if you can afford that? It is about £270 for a consult with Newson and then they will write to your GP and tell them what to prescribe so the idea is you get the meds on the NHS. You need one consult a year to stay registered with Newson.

I think you have multiple things going on, which lead in different directions in terms of prescriptions so finding the right balance of stuff for you is going to be quite nuanced.

For eg: The intense pain you describe really sounds like endometriosis or adenomyosis. I suffer from endo (diagnosed after a lap) and I was also vomiting and passing out from the pain.... and it does take sufficient P to stop symptoms. I'm lucky and tolerate P really well so can take however much I need with no side effects and I am symptom-free from endo at the moment, and on high dose E.

Cyclogest is pretty much the same thing as utrogestan, just in a waxy pessary instead of the capsule. It is still body identical P. So if you can't take utrogestan vaginally, I don't think you're going to be better off with Cyclogest.

If it is still causing these symptoms vaginally, have you tried taking it rectally? A lot of women in the US prefer to take it rectally. It is absorbed well and less messy. Don't push it up too far or it will get absorbed systemically and still give the same side effects. Push it in just past the sphincter till it gets sucked in (sorry)...

After that, the Mirena is another thing you can try. It does have a very very low dose of synthetic P but for most women it stays local to the uterus and doesn't go systemic. If it does, you can have it removed but at least you've tried it.

Then, there are several other synthetic progestins you can work your way through trying. Some of these are officially approved for HRT use, some are mini pills which are approved to be used alongside HRT but are often used instead of P if women can't tolerate the P. This is the official list: https://thebms.org.uk/wp-content/uploads/2023/04/14-BMS-TfC-Progestogens-and-endometrial-protection-APR2023-A.pdf  Obviously skip those you've tried in the past which have caused symptoms but you might find some which you haven't tried before.

From your list of symptoms in your original post, some of those do sound like P side effects but others do sound like low E. The muscle pains, poor sleep and palpitations are all low E symptoms really. So I'm not sure about reducing your gel to 2 pumps. I'd really be thinking about needing to increase it beyond the licencsed dose or switch to patches, but you do need to find a P solution.

Lastly, you could also push for investigation and treatment for your painful heavy periods. It sounds to me like doctors want to just ignore you because they think this will magically all go away at menopause. It may not and if you want to take hormones and gain the benefits of those, it probably won't (not if you can't tolerate any P anyway). Really the standard of care and best practice would be for you to have an ultrasound and MRI to begin with, as sometimes adhesions suggestive of endo can be visible that way - and then to be given a laparoscopy to diagnose and treat any endo. (Keyhole surgery.) The gold standard for this is excision surgery. There are lots of great endo groups on Facebook with more info on all this.

[JinnyCat]

Hi,
Your comment "what is in this Utrogestan to make women feel so terrible" has really stayed with me.
I'm back to cyclical regime as still Peri, and now on my Utrogestan-free days, and I really notice that I feel normal again.
After 5 years HRT I'm wondering whether it's really helping now or bringing new problems 

Hi Minnie Mouse,

That is so interesting, it seems to be an instant improvement in our mood when the progesterone stops? You are quite right, is this stuff really helping us, or bringing a new set of problems? I noticed an instant improvement when i stopped the Utrogestan, almost like a quiet, calm stillness. I felt so much better.

I think having discovered this forum (thank god....) and realised it is not just me, it is truly frightening to read of soooo many women saying the same thing about Utrogestan, or other progesterones for that matter. As we are all so unique, and what works for one of us doesn't necessarily work for another, WHY is progestrerone having the same awful effect on so many of us?
It has worked for me in that it has cut out the horrendously painful periods (which came with vomiting and passing out....) but whilst it has taken me a while to realise, it has had the most appalling effect on my moods, tolerance levels, generally ability to cope with life and general attitude. My marriage is hanging on by a thread because of this, and the GP just doesn't seem to hear me. My husband is amazing, and says he is hanging on in there as he knows this isnt me, but quality of life is just utterly non existent.

I have been taking Cyclogest since 4th Jan now, and those same feelings i had on Utrogestan have come back, and i feel utterly dreadful,  so that is it, i am not taking any more. It just is doing something awful to me. I am now stuck, as i shouldn't be taking the Oestrogel without the progesterone obviously, so my only option is to withdraw completely.😒

[JinnyCat]

Hi Hurdity and Joziel,

Apologies i am replying to you both in one post, no idea what i am doing but can't seem to 'reply' to your individual posts!🤦🏻‍♀️

Hurdity - Thanks for your thoughts on the Cyclogest....i thought it seemed a lot! Scary....have they got my prescription wrong??  I also discovered after my last post that yes indeed, Zoely is like Qlaira, so that scuppers that! I feel at a bit of a dead end at the moment, as my GP practice are just not offering the support, nor seem to be sufficiently informed - i gain a far better insight on here!

Joziel - thank you so much for your reply. I have been to Newson Health previously, and found them very good, but that was prior to me discovering me and progesterone dont get on....
Cost is a factor at the moment, othetwise i would definitely be back there 😒

I absolutely agree, i think i have either endo or adenomyosis...i have raised this countless times with my GP, who tells me the only way they could find that out is by doing a hysterectomy "and they won't do that as it's a major operation, they are drastically reducing the amount they carry out because it's high risk and you'd have to wait for ages for one anyway..."
I have had an ultrasound, which they said was clear 🤔 and also a hysteroscopy, which apparently showed no issue with womb or ovaries.....😔 so back to square one. I saw a gynae consultant last November (an appointment i'd been referred for BEFORE COVID and the referrals kept going into some black hole....) and he wants a two month completed symptom checker to see what my moods are like before he will consider next steps.....

Thsnk you so much for Cyclogest and alternative progestin list....i will take a look. I know i need to come off the Cyclogest, but need to find some alternative in the meantime.  I suffered terrible depression in my 20s from taking the pill, so have refused Mirena (which they push with great gusto....as it also means you hopefully go away for quite some time)

You are absolutely right, i do believe the GPs are hoping i will just go away until menopause happens. I am certainly made to feel like i am a problem 😪. I will take a look at the endo groups on Facebook.
Thank you again for taking the time to reply, really insightful especially as you had the pain/vomiting/passing out.....

X

Jinny, I think you would really benefit from working with a menopause specialist in a private clinic if you can afford that? It is about £270 for a consult with Newson and then they will write to your GP and tell them what to prescribe so the idea is you get the meds on the NHS. You need one consult a year to stay registered with Newson.

I think you have multiple things going on, which lead in different directions in terms of prescriptions so finding the right balance of stuff for you is going to be quite nuanced.

For eg: The intense pain you describe really sounds like endometriosis or adenomyosis. I suffer from endo (diagnosed after a lap) and I was also vomiting and passing out from the pain.... and it does take sufficient P to stop symptoms. I'm lucky and tolerate P really well so can take however much I need with no side effects and I am symptom-free from endo at the moment, and on high dose E.

Cyclogest is pretty much the same thing as utrogestan, just in a waxy pessary instead of the capsule. It is still body identical P. So if you can't take utrogestan vaginally, I don't think you're going to be better off with Cyclogest.

If it is still causing these symptoms vaginally, have you tried taking it rectally? A lot of women in the US prefer to take it rectally. It is absorbed well and less messy. Don't push it up too far or it will get absorbed systemically and still give the same side effects. Push it in just past the sphincter till it gets sucked in (sorry)...

After that, the Mirena is another thing you can try. It does have a very very low dose of synthetic P but for most women it stays local to the uterus and doesn't go systemic. If it does, you can have it removed but at least you've tried it.

Then, there are several other synthetic progestins you can work your way through trying. Some of these are officially approved for HRT use, some are mini pills which are approved to be used alongside HRT but are often used instead of P if women can't tolerate the P. This is the official list: https://thebms.org.uk/wp-content/uploads/2023/04/14-BMS-TfC-Progestogens-and-endometrial-protection-APR2023-A.pdf  Obviously skip those you've tried in the past which have caused symptoms but you might find some which you haven't tried before.

From your list of symptoms in your original post, some of those do sound like P side effects but others do sound like low E. The muscle pains, poor sleep and palpitations are all low E symptoms really. So I'm not sure about reducing your gel to 2 pumps. I'd really be thinking about needing to increase it beyond the licencsed dose or switch to patches, but you do need to find a P solution.

Lastly, you could also push for investigation and treatment for your painful heavy periods. It sounds to me like doctors want to just ignore you because they think this will magically all go away at menopause. It may not and if you want to take hormones and gain the benefits of those, it probably won't (not if you can't tolerate any P anyway). Really the standard of care and best practice would be for you to have an ultrasound and MRI to begin with, as sometimes adhesions suggestive of endo can be visible that way - and then to be given a laparoscopy to diagnose and treat any endo. (Keyhole surgery.) The gold standard for this is excision surgery. There are lots of great endo groups on Facebook with more info on all this.

[flo69]

I didn't reply initially because you are still peri and my solution, tibolone, is supposed to be for post menopausal women, although 20% of women have "periods" on it, including myself until four years after natural menopause (when all vaginal bleeding stopped for over a year before I started any HRT).

If I were you I'd ask about it, you are already getting HRT after all, they are nearly all only lisenced for post meno use, so they might let you have tibolone. It is supposed to be the go to HRT substitute for the one in six women who are progesterone intolerant, but it is underused. I think it might cause birth defects so they won't give it to any woman planning to have a child, then some GPs get stuck in the rules and forget common sense.

My menopause story in brief;

I phoned the GP about 15 months post menopause because while my mood had rarely been better (peri had been worse), I was drenched in night sweats every night, combined with running to the cold bathroom twice a night and I was suffering badly with lack of sleep plus the soaking wet dashes to the loo in winter were pure a torture of uncontrollable shivering.
She suggested HRT. I said, no, I couldn't tolerate the hormones in the pill, mini pill or mirena, so what are the chances of it going well?

My GP though it had 100% chance of success, told me some anecdotals and said women don't get progesterone intolerance with HRT because it is a much lower dose, so low that the reaction I feared was physically not even possible.

I believed her until I fell off a mental health cliff a couple of months later.

Then the GP argued with me on the phone that I couldn't have had a reaction to HRT, that can't happen, women love it.
Honestly, "But women love it" is what she told me, in response to me saying I hate it!

I stopped Evorel Conti at that point, against my GPs advice. I had started bleeding as well which I hadn't expected, but they don't worry about that within the first six months of any new HRT.

I'd like to say my GP realised her mistake and changed her attitude, but she doubled down instead and gave me provera next. I couldn't even get out of bed with that one, just lay in a puddle of tears needing help just to walk to the toilet, I was as exhausted as if I had influenza.

After that I saw a specialist who suggested utrogestan or cyclogest and wrote them down for my GP in a letter. Until then my GP insisted she couldn't prescribe either of these medicines. I'd read about them on here and I'd asked a few times.

Both resulted in me being suicidal in less than a week. She put me on fluoxetine (prozac) at this point, because it wasn't the HRT it was me being depressed.

I love tibolone, it is only a single dose size, no allowing for differences in women as usual, but I take one of those pills every day and I feel better than I ever did during my years of periods and pregnancies. I feel like I remember feeling as a child, free from nasty hormones messing with my head.

I have hot flushes with coffee now, otherwise I don't have any and at night I only sweat through my nightie once every few weeks. It takes a while to work, not the instant fix HRT seems to be, but far far superior imo, with better bone protection to boot.

Don't give up, don't believe them that it doesn't matter, it matters!

[Minnie Mouse]

OMG this site is so useful.  I've been with a private menopause clinic for years, but even they are a bit "we don't really know" about a lot of this.
Jinny, you made me laugh with your comment about Mirena: it's really handy as it makes us go away for a while & stop complaining!
It's never been clearer (now that I'm off it until Tuesday) that Utrogestan really changes me, especially my sleep.
I'm trying to find non medical ways of feeling better, for me a giant SAD lamp blasting away every morning is helping, as I think the lack of daylight is playing a part.
Good luck all 

[JinnyCat]

I didn't reply initially because you are still peri and my solution, tibolone, is supposed to be for post menopausal women, although 20% of women have "periods" on it, including myself until four years after natural menopause (when all vaginal bleeding stopped for over a year before I started any HRT).

If I were you I'd ask about it, you are already getting HRT after all, they are nearly all only lisenced for post meno use, so they might let you have tibolone. It is supposed to be the go to HRT substitute for the one in six women who are progesterone intolerant, but it is underused. I think it might cause birth defects so they won't give it to any woman planning to have a child, then some GPs get stuck in the rules and forget common sense.

My menopause story in brief;

I phoned the GP about 15 months post menopause because while my mood had rarely been better (peri had been worse), I was drenched in night sweats every night, combined with running to the cold bathroom twice a night and I was suffering badly with lack of sleep plus the soaking wet dashes to the loo in winter were pure a torture of uncontrollable shivering.
She suggested HRT. I said, no, I couldn't tolerate the hormones in the pill, mini pill or mirena, so what are the chances of it going well?

My GP though it had 100% chance of success, told me some anecdotals and said women don't get progesterone intolerance with HRT because it is a much lower dose, so low that the reaction I feared was physically not even possible.

I believed her until I fell off a mental health cliff a couple of months later.

Then the GP argued with me on the phone that I couldn't have had a reaction to HRT, that can't happen, women love it.
Honestly, "But women love it" is what she told me, in response to me saying I hate it!

I stopped Evorel Conti at that point, against my GPs advice. I had started bleeding as well which I hadn't expected, but they don't worry about that within the first six months of any new HRT.

I'd like to say my GP realised her mistake and changed her attitude, but she doubled down instead and gave me provera next. I couldn't even get out of bed with that one, just lay in a puddle of tears needing help just to walk to the toilet, I was as exhausted as if I had influenza.

After that I saw a specialist who suggested utrogestan or cyclogest and wrote them down for my GP in a letter. Until then my GP insisted she couldn't prescribe either of these medicines. I'd read about them on here and I'd asked a few times.

Both resulted in me being suicidal in less than a week. She put me on fluoxetine (prozac) at this point, because it wasn't the HRT it was me being depressed.

I love tibolone, it is only a single dose size, no allowing for differences in women as usual, but I take one of those pills every day and I feel better than I ever did during my years of periods and pregnancies. I feel like I remember feeling as a child, free from nasty hormones messing with my head.

I have hot flushes with coffee now, otherwise I don't have any and at night I only sweat through my nightie once every few weeks. It takes a while to work, not the instant fix HRT seems to be, but far far superior imo, with better bone protection to boot.

Don't give up, don't believe them that it doesn't matter, it matters!

Hello Flo69, and oh thank you for your response!
This site, and the ladies on here is more of a support, and insight than all the GPs i've seen put together ☹️.
So you are progesterone intolerant too.....and your description of how it impacts you is exactly what it does to me, mentally i drop off a cliff
I do feel like giving up, and coming off HRT completely, but then the determined part of me thinks no, why should i go away and be quiet, and suffer in silence? They have got away with it then. I just need to keep pushing back, because i know for CERTAIN now that it is not in my mind and it is possible to get back to some kind of normality, it is just finding the right health professional who is well informed, and supportive.
I was told in my last consult with my GP (when i said the previous month of December had been horrendous, mood and symptom-wise, that it wasn't hormones, that is just life and Christmas, everyone feels like that. 😡😤. The same GP has tried to give me antidepressants before, and i refuse. Ditto CBT and yoga she thinks will fix me. 
Thank you so much for highlighting Tibolone. I will ask the Gynae consultant at my next appointment. I am so glad that it works for you, and i am very grateful for your insights into how progesterone impacts you, and how you have been treated, which is just awful.😡 It is so important that we all stand our ground....we might be in hormonal messes 🤦🏻‍♀️ but we know our own minds, and bodies, and what agrees, and doesn't agree with us. 

In particular, you say you now feel as you did as a child, free from the confusion of hormones. That sounds like some kind of heaven....🥰 x

[JinnyCat]

OMG this site is so useful.  I've been with a private menopause clinic for years, but even they are a bit "we don't really know" about a lot of this.
Jinny, you made me laugh with your comment about Mirena: it's really handy as it makes us go away for a while & stop complaining!
It's never been clearer (now that I'm off it until Tuesday) that Utrogestan really changes me, especially my sleep.
I'm trying to find non medical ways of feeling better, for me a giant SAD lamp blasting away every morning is helping, as I think the lack of daylight is playing a part.
Good luck all 

Hi Minnie Mouse,

Glad i made you laugh! It's true though.....

I have only been on Cyclogest since 5th Jan but have already stopped it. It has made me feel horrendous and transforms my personality, and not in a good way 
Keep pushing back, and don't give up. Have you seen Flo69's reply to me about Tibolone? Not sure if this might be worth a try for you too? 🥰

[Minnie Mouse]

Thanks, I'll look into Tibolone.
Some GPs very good, but I never forget one GP I went to a few years ago with a collection of Peri symptoms just said: "it's rubbish getting older isn't it" & sent me away with nowt.
OMG

[flo69]

It is so important that we all stand our ground....we might be in hormonal messes 🤦🏻‍♀️ but we know our own minds, and bodies, and what agrees, and doesn't agree with us. 

In particular, you say you now feel as you did as a child, free from the confusion of hormones. That sounds like some kind of heaven....🥰 x

I couldn't get through to my GP at all that I was literally planning my suicide within a few days of taking progesterone. Every time, she kept saying things like, "Well, we recomend you try it for three months because you can't know how it's going to make you feel." As if I wasn't already feeling worse than I believe any human would find acceptable and I feared doing something about it while in that frame of mind, however that is not a recognised risk of HRT so it didn't count at all.

I felt she was trying to make me feel like the ultimate weirdo, the only one, it's just you, noone else feels like that, a bit like the post office scandal!

Anyway, my older sister says the same about feeling like a child again, we both had a rough time in peri, being out the other side really does feel free.

[joziel]

Jinny, if I can give one piece of general advice, it's not to assume anything (in terms of how you will react to a med) until you've tried it.

To correct a few things...

> I absolutely agree, i think i have either endo or adenomyosis...i have raised this countless times with my GP, who tells me the only way they could find that out is by doing a hysterectomy "and they won't do that as it's a major operation, they are drastically reducing the amount they carry out because it's high risk and you'd have to wait for ages for one anyway..."

Sorry, this is total crap. I think you need to change doctors or change practices, especially if you want a decent standard of care and you're not going to go private.

Are you sure she said a 'hysterectomy' and not a 'laparoscopy'? The gold standard for diagnosing endo is a laparoscopy. This is keyhole surgery where the surgeon looks and gets eyes on all the organs, to see if he can identify endo. There is a 'diagnostic lap' and a 'treatment lap' - but if a surgeon is going in there, and you are under GA, they may as well treat anything they see. Otherwise you'd have to go back for another surgery. I went private for my lap back in 2013 because I was leaving the UK and at the time the waiting list was 9 months, so I was going to get caught between 2 health services. I had surgery 5 days after my initial appointment with a surgeon, privately - and he gave me a treatment lap for the same cost as a diagnostic lap. (It was about £3K, back in 2013.)

The other thing to say about laps generally, is it's important to see an endo specialist - because often endo is missed if the surgeon doesn't know where to look or how to identify it. You have the right to have surgery anywhere on the NHS so would need to research where to go, in FB groups for endo - whether in the NHS or privately.

The gold standard treatment is also excision surgery, where they cut out the endo they find, at the roots. This takes more surgical skill and someone who knows what they are doing. The less effective treatment is for it to be lasered out. This leaves the roots and it typically just grows back again.

HOWEVER, I would say - before you go down the lap route - it is really promising that these symptoms go away when you take the utrogestan, because it means the endo will be controlled and suppressed if you can just find a decent progestin which works for you and doesn't give you the side effects. YOU REALLY NEED TO LEAVE NO STONE UNTURNED. That means - try everything.

>I suffered terrible depression in my 20s from taking the pill, so have refused Mirena (which they push with great gusto....as it also means you hopefully go away for quite some time)

I would not assume that you are going to get the same symptoms from the Mirena. The pill is designed to be systemic and it affects every organ in the body. The tiny dose of progestin in the Mirena is supposed to stay local to the uterus and not go systemic. Research shows that in the first few months it is in, it does release more progestin and you may absorb more systemically - but then this reduces.

My concern with the Mirena would really be that it doesn't control the endo - simply BECAUSE it is local and not systemic. Who knows where your endo is... It could be on bowels, bladder, etc etc. And progestin in your uterus is not necessarily going to suppress endo anywhere else in the pelvic cavity.

Have you tried desogestrel? It is a mini-pill which is licensed to be used alongside HRT and (off license) can be used as a progestin with HRT. In the studies concerned, they used double the mini pill dose - but I'd think even the regular mini pill dose would be sufficient, along with an ultrasound after 6 months to make sure your uterine lining is thin under that regime. (You may need to pay privately for that ultrasound.)

Desogestrel is available (for contraception) without a prescription now, so you don't even need your GP's consent or prescription to try this. Frankly, I am so over NHS GPs by this point.... I would try desogestrel at the mini pill dose and see how that goes. By 6 months, I would get a private ultrasound to check uterine lining. Keep getting the utrogestan from the GP along with the estrogen, just don't take the P.

See here, in that link I gave you above:

" Earlier studies have reported that desogestrel 150 micrograms is effective as the progestogen component
of HRT with no increase in the risk of endometrial hyperplasia.33-34 There is lack of evidence on the use of
desogestrel 75 micrograms as the progestogen component of HRT. If desogestrel 75 micrograms is used
as contraception in women receiving HRT, it would be recommended to add further progestogen (e.g.
Utrogestan 100 mg daily or 200 mg for 12 days a month) to provide adequate endometrial protection."

75mcg is the regular desogestrel dosage for mini pill and 150mcg is the doubled dosage they've used for HRT studies and found to be fine. (They just didn't use enough women in the study to make it viable as a licensed alternative). But all women are different. I was on desogestrel after my lap surgery for 10 years and it very successfully suppressed and controlled my endo all that time. I also didn't bleed at all.

There are other options for progestins in that list.... Work through and make sure you've tried them all. Anything which says it is 'licensed', is something your GP should readily agree to prescribe you to try.

Hope that helps...

[Peach8]

Hi Jinny. I've also had horrific period pain since forever, fainting, vomiting, excruciating cramps. I've had one specialist say I likely have endo and one tell me I haven't and also refused to do any investigations. I recently was given tranexamic acid which I took for a couple of days at the start of my period, it made a huge difference. I only used it for 3 months and the pain is much better, not gone but manageable. That's maybe worth looking into.
I also cannot tolerate utrogestan, it gave me heartburn, nightmares, anxiety and filled me with dread when at the thought of taking it. I tried mirena but had spotting every day for 6 months so gave up although there were no other side effects. I couldn't take the combined pill when I was younger like you. I'm now on provera and it seems to be okay. I hope you find something that helps xx