Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Keeleyruth on July 23, 2022, 12:15:30 PM
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Hiya ladies...
I'm still here and still struggling with all this :( I really really need some advice. I'm currently 45yrs old.
I'm peri and have been for 7 yrs now. I have terrible symptoms that have a huge impact upon my life and my families life and have tried various HRT combo's but to no avail. I'm under an NHS menopause consultant, was advised Marina coil, which sent me severely depressed and therefore I took it out. No other options have been offered to me since I removed the coil.
After what felt like a breakdown in January, I booked a private appointment with Newson Health. I was placed on a totally different HRT regime which included -
Oestrogel 4 pumps daily
Estrogen tablet in vagina for VA - 3 times a week
Testosterone daily
Ultrogeston 200mg for 12 days out of the month.
It has been 6 months and I still feel terrible. I was told to increase my oestrogel when I feel more symptomatic, which I have but this hasn't done anything. I went up to 6 pumps a day... I was not advised how many pumps I should increase by? Is this enough or do I just keep increasing until I hopefully feel better?? Anyone know the limit?
I am sensitive to progesterone and my symptoms follow my period. I have one 'normal' week a month when I can actually function but as soon as I take my progesterone I feel physically ill, like I have a virus? I feel exhausted, my joints ache, I feel bunged up like I'm experiencing an allergy, I get acne, my moods swings are horrendous (I could kill), I get anxiety, I sweat more under my armpits, I cry ALLLLLL the time, I can't think straight, I barely function. I'm like a zombie. Existing but not living.
I would say I feel these symptoms for about 20-25 days out of every month and it's always when I take progesterone, leading up to and during my period. I take Ultrogeston vaginally as it is supposed to be less symptomatic but that doesn't help. I always react the same to progesterone no matter how I take it. I've highlighted this to every medical professional I have talked to.
My question is how do other ladies cope with progesterone intolerance?? I've decided I'm not going to take my progesterone anymore - I can't face feeling this dreadful all the time and will be contacting my GP to inform them.
I just don't know what to do next or who to turn to for help?
The NHS haven't been able to help in the last 7 yrs, my menopause specialist hasn't been able to help and I'm reluctant (and not in a position to sustain) keep spending £300+ every time I talk to Newson Health.
I feel like I am losing this battle and will never feel like my old self again. If anyone can tell me how they manage their progesterone intolerance I would be forever grateful xxxxx
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Oh my, you poor thing :-\
Progesterone intolerance appears to be very common and it really needs to be addressed by the medics, as it causes no end of mayhem to the body and brain.
Utrogestan is meant to be the body identical one, but you say you can’t tolerate that even vaginally. What about femeston 2/10? The progesterone in that is quite gentle and offers fewer side effects. Femeston is a tablet form of HRT.
Other than a hysterectomy, I’m not sure what else to suggest.
There is one called cyclogest ( I think ) which might suit?
Maybe under the guidance of Newson, you could ditch the progesterone and have regular scans to check the womb lining remains thin?
Re the Oestrogen. Have you had a blood test to check you are absorbing?
If still symptomatic, the advice is to increase the dose. However you are already on a good od whack of Oestrogen, so chances are, you are not absorbing. It might be worth switching to patches instead, to see if they symptoms calm down a bit?
Really hope others pop along to share their advice with you xx
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I really appreciate these suggestions Nas... I'll look into them.
Thank you so much for taking the time to reply :)
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No problem Keeleyruth,
There are always solutions to these issues, even though it may not seem like it at the time.
There are quite a few different progesterones available, at different doses, so I guess it just takes a bit of time to research them.
xx
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Hi Keeleyruth
I like you am very progesterone intolerant. I manage it by following Prof Studd’s (now deceased) regime. That is utrogestan vaginally x 7 days. I was under a meno specialist (nhs) who supervised me and I tried every prog available and this was the only regime I can tolerate.
I am careful to have regular scans and am pleased to say it has worked for me.
I don’t want a hysterectomy as it is a major operation so if I wish to stay on hrt it’s the only way.
I have to say I do struggle with utro withdrawal every month but it only lasts a few days so is bearable,
Re oestrogen have you tried patches, I’ve always found them more consistent than gel. Also high doses of oestrogen can be as bad as too low a dose, so maybe you need to lower your dose. When it comes to oestrogen less is more I find.
Hope this helps x
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Sorry you’re having such a rough time, you poor thing. Not sure if it’s helpful but I felt terrible with oral progesterone. Unwell, angry and nauseous. I tried two different brands of pills and then asked to try patches. These were a game changer. I am not sure if the dose is high enough for you or whether they can be used in conjunction with other things but no side affects physically or emotionally for me. Good luck. X
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Tashw, which patches are you on now, if you don't mind me asking?
Thanks, :)
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Hello Keeleyruth.
I am so sorry that you are suffering.
I am using half a 200mcg Cyclogest pessary every night as prescribed by Newson Health. I find them easy to use and haven't experienced any problems with them.
In the past I have tried many types of progesterone but I've never figured out if I am prog intolerant or not. I did try Oestrogen only for a while and my doctor at Newson Health expected me to feel fantastic but I didn't notice any difference so maybe Oestrogen levels are the main issue for me?
Perhaps you could ask NH if you can try Cyclogest as it may well suit you. This medication is usually prescribed for fertility treatment but it can be adapted and used for the menopause.
I hope this helps you in some way and please keep us updated with your progress.
Wishing you well and sending hugs.
K.
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Keeleyruth, I have a few thoughts for what it's worth...
1. About the estrogen side of things first... How much estrogen were you on when you had the Mirena coil in? Was it also 4 pumps or the equivalent and were you fine with that? I ask this because my experience with Newson Health (I'm a client) is that they tend to assume people are going to need high amounts of estrogen and then if anything isn't perfect just tell you to take more and more of it, which often just results in chaos or worse symptoms. I've just been to hell and back because my Newson doctor seemed to assume I would need 75-100mcg and kept telling me to increase incrementally - despite really concerning heart palps and high blood pressure and anxiety side effects which saw me going to A&E!! They seemed to just go off my blood results (which were 233nmol on a 50 patch) rather than what I felt like. (In reality, I felt fine as soon as I started the 25mcg patch and probably didn't need any more.)
Are you sure you need 4 pumps of estrogel? Have you tried reducing? How does that affect what you feel like? The BMS have a different approach, which is to start off low and to remain there for at least 12wks and only to increase if symptoms remain. If you increase and the symptoms don't go away after many weeks, then reduce back to the previous dose, is their advice. If I'd have done that, I'd have avoided so much stress and anxiety and lack of sleep over the last many months.
Some of the things you list there, like feeling bunged up with an allergy, anxiety, mood swings, can all be high estrogen (for you) symptoms. The allergy thing in particular can be associated with high histamine levels - caused by too much estrogen.
2. With the progesterone, like Perinowpost says, there are 'reduced regimes' of progesterone which see you taking much less than the recommended amount (taking it for fewer days a month) - usually with more supervision via scans to be sure you are doing okay with it. You'd need to do that with the blessing of your doctor but I'd think Newson Health should be up on that idea...
Have you actually tried taking it orally? I say that because I know everyone assumes it affects you less if taken vaginally, but I have come across a couple of women online who actually felt BETTER taking it orally than vaginally. So it might be worth a try at least.
The other option might be to try a continuous regime, where you take only 100mg but every night - or every other night, if vaginally. That might result in more stability and less fluctuating hormones causing all this and also a lower dose on a daily basis, whilst enough to give uterine protection. You might get some breakthrough bleeding if you are not yet menopausal but that would just be an inconvenience really.
The other thing to say is that, if you did reduce your estrogen (as in 1 above) you would arguably be safer doing less progesterone as well so it would help if you needed to follow a reduced progesterone regime, not to have to combat really high estrogen levels...
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Ace advice from joziel :)!
I too have read/heard that the Newson approach is to increase oestrogen.
6 pumps is a fair old whack and if you aren't feeling better having increased, then increasing even further, I doubt will help.
It's all a fine balancing act, but I am sure you can find a way through this..
Maybe even (if you can and I am not saying you should) do a re set? Then you can see where you are at symtom wise?
Don't just go cold turley though, as the body may go into shock. Try and do it slowly.
Anyway, I think Joziel has left some sound advice to be mulling over for now.
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Awwh hope you are okay Keeleyruth :(
I am actually considering coming off HRT altogether…I take 100mg utrogestan vaginally continuously along with estrogel and cannot cope with the mood swings any longer. I hate feeling like this and it’s not fair on my family.
Wishing you well lovely x
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You can also find out about Crinone - a progesterone vaginal gel used 3 x week. It is progesterone rather than a progestogen and I don't get get the side effects I got from Utrogestan.
I have to pay privately for this and my gp is aghast. But she would be happy with a Mirena coil that has less progesterone than Crinone so I am not sure why.
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You can also find out about Crinone - a progesterone vaginal gel used 3 x week. It is progesterone rather than a progestogen and I don't get get the side effects I got from Utrogestan.
I have to pay privately for this and my gp is aghast. But she would be happy with a Mirena coil that has less progesterone than Crinone so I am not sure why.
Ooh I haven’t heard of Crinone, will go and do a bit of research on it…thank you! :)
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I think progesterone intolerance is not really fully explained. No real guidance as to what alternatives there are. I still feel getting the right info and balance is difficult. You need to do all the asking. No.one suggests any alternatives. It's a struggle.
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I was placed on a totally different HRT regime which included -
Oestrogel 4 pumps daily
Estrogen tablet in vagina for VA - 3 times a week
Testosterone daily
Ultrogeston 200mg for 12 days out of the month.
It has been 6 months and I still feel terrible. I was told to increase my oestrogel when I feel more symptomatic, which I have but this hasn't done anything.
I am sensitive to progesterone and my symptoms follow my period. I have one 'normal' week a month when I can actually function but as soon as I take my progesterone I feel physically ill, like I have a virus? I feel exhausted, my joints ache, I feel bunged up like I'm experiencing an allergy, I get acne, my moods swings are horrendous (I could kill), I get anxiety, I sweat more under my armpits, I cry ALLLLLL the time, I can't think straight, I barely function. I'm like a zombie. Existing but not living.
I would say I feel these symptoms for about 20-25 days out of every month and it's always when I take progesterone, leading up to and during my period. I take Ultrogeston vaginally as it is supposed to be less symptomatic but that doesn't help. I always react the same to progesterone no matter how I take it. I've highlighted this to every medical professional I have talked to.
Hi Keeleyruth
Sorry things are so tough. I could have written what you wrote about how Utrogestan makes you feel - horrific.
So under specialist guidance I trialed oestrogen only (patches) - not as a long term solution but to see if oestrogen helped. I felt a lot better. But then I began bleeding very heavily and it didn’t stop, so I had to take Utrogestan to stop it. I took it vaginally and whist not ‘as’ severe as when I took it orally, it still wasn’t tolerable at all. Even only using 1 tablet instead of 2 wasn’t tolerable.
(I also started having skin reactions to the oestrogen patches and had to switch to gel, which I don’t feel I’m absorbing as well as I did the patches - maybe patches would suit you better, or a different gel?)
I agreed to try Utrogestan for one more cycle vaginally - specialist said to give it time etc) but I had to stop it by day 6 as I felt poisoned and physically/ mentally/ emotionally horrific.
So to get to my point… I found a pharmacy to prescribe Cyclogest pessaries which I decided to try for the remaining days of this cycle.
I didn’t hold much hope as it’s the same micronised progesterone as Utrogestan (without all the fillers). But surprisingly it seems I’m tolerating this much better - still groggy and a bit of a rollercoaster of emotions but nothing in comparison to how I feel on Utrogestan. I’ve actually been able to think and been a bit more productive (which I couldn’t on Utrogestan).
It’s early days but I’m going to try just Cyclogest on my next cycle to gauge things, then have a followup appt with meno specialist - but I’m feeling hopeful.
Maybe this is something you can try too. I think people are more inclined to prescribe Cyclogest atm due to Utrogestan shortages.
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Hi Keeleyruth,
If you do the overemotional meltdown on the phone to a GP you'll risk being refused oestrogen. If you complain too heavily about progesterone and they suspect you might become non compliant and take "oestrogen only" for your sanity, then you'll be left with only the choice between products you can't separate yourself. That's my experience.
The only alternative I know of is tibolone. I've been searching for it on this forum and there are partial conversations with bits editted out, but no recent intact conversations that I can find.
Maybe the moderators could leave some complete threads floating about on it next time it's discussed? There were definitely more when I was browsing this forum before joining to post.
Tibolone is fully allowed to be prescribed in the UK, so there's no need to censor out the success stories. Is it because America banned it? Some of us fall into the 10% who are not doing better on conventional HRT than without it, just because we're not the other 90% doesn't make us irrelevant and there are no shortages of tibolone that I know of.
Sorry, grumpy old woman strikes again, I didn't sleep last night after vaginally inserting 100mg utrogestan at 1pm yesterday lunchtime. I want tibolone instead.
Lights out and sleeping at 11.30pm, woke at 2am hating my life, I never have insomnia when I'm not taking utrogestan!
Got back over at 4.30am, slept til 8.30am so that's ok, I can sleep late, a long term hater of other people's timetables, I'm self employed and have taken the last two months off work, unpaid of course, to try and make my life worth living again.
I've not found lasting success yet, but here's some of the things I've learnt since being diagnosed as post menopausal last year;
Post menopausal might not be the final word, I reverted back to being peri after covid likely caused my periods to stop for over a year, then I got better, in my 50s, yeah, mixed feelings on that :-\
Evorel conti contains the same estrogen as Estradot 50, but it isn't the same as Evorel 50. The former both work better for me.
provera has to be the worst progesterone, I slept all day and night, basically I have bad flu symptoms with provera and working past it isn't possible at all, followed by utrogestan, then mirena, then northisterone which didn't make me nosedive immediately, that took time to build up because I was on conti then as "post meno".
I've experienced the same nosedive in mood and energy when I've had the pill, the mini pill, the coil, pregnancy and PMS. I'll consider the mirena coil again if I have to, it settled into a low grade depression after the first couple of months of feeling frantic with everything feeling wrong in the world. I asked for it to be removed after 2 months, they refused and gave me prozac instead.
I had it in nearly 4 years in the end, then one day I felt the strings and pulled very hard, lol, out it came with a little blood and half a day later I was crying, with relief this time to be released from that high alert tension I'd endured so long.
My GP claims to have a special interest in menopause, 15 months into this journey I seem to know a lot more than she does on this narrow topic and her claims to be knowledgeable really get in the way of actual facts getting through.
Speaking to a nurse practioner in the HRT clinic restored my faith in the health service. She actually knew what I was talking about!
At this point, for anyone not tolerating progesterone, tibolone is great, it has the vital ingredients your body needs to get well and it can make you well, but only if you manage to stop bleeding on it, if you go back to having periods then they whisk it away and tell you it's not suitable for you. It's not easy to get despite being very effective and established as a good treatment with high tolerability and low risks. It will be my number one choice for whenever they say I'm post meno again and can have it.
Online pharmacies stock it as Livial, I'm tempted to just buy some online, I'm not contraindicated for it more than any other HRT, I'm slim build, non smoker, early 50s.
For now I'm restricted to the other forms of HRT which are also only licensed for post meno, so that makes no sense.
NHS HRT clinics have waiting lists from 2 months to 18 months just from reports I've read here. I waited quite an average 8 months to be seen.
So today is day two of utrogestan and I'm trying to build myself up to do it, the heartburn hasn't eased since last night, I'm considering some artificial courage before I insert the next one, I'm not quite over the first one yet and I know even 100mg orally will make me suicidal and that's how I've felt on and off after 100mg vaginally yesterday, might get used to it?
As far as I'm concerned, the risk of developing womb cancer if I don't take progesterone is purely theoretical while the risk I'll finally justify killing myself and do it, is very much more real and to be avoided. My GP disagrees, she thinks I'm blaming progesterone because I heard other people are intolerant and jumped on the bandwagon. She knows that it must be something else, someday she'll work it out.
Sorry Keeleyruth, I get long winded, PM me if you want more on what I've discovered about tibolone or progesterone intolerance. I really want to get on tibolone for life, but the weird rules say you must be post meno and also under 60. They nominally restrict it because of the lack of safety studies done during the decades it's been available for women to use. It comes out really well for bone protection and other benefits too. My hope is that once I get it, they'll just forget about me and let me stay on it long term.