Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Logie on January 27, 2022, 12:07:17 PM
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Hello
Could anyone please recommend a specialist who has experience with severe mood changes and allergy symptoms caused by progesterone, to help me with trying to find a safe and acceptable dose and type?
I have been diagnosed as severely intolerant by a gyne, who told me this wasn't an area she had much experience in (one other patient in 20 years, which came as a surprise to me). This was at a private appointment booked by my partner due to the reactions to pessary utrogestan progesterone (it's landed me in a&e twice).
She had advised 200mg x7 days. This has since been seconded by the Oxford Menopause Clinic to my GP who also said they will not go to a lower dose than this.
I have the option of mirena/jaydess coil, but the thinking is to try that via a patch first (FemSeven sequi) for quick removal, and there is a wait until June for those. This is in case of another reaction, which is anticipated.
My GP advised me it's likely I'll need a hysterectomy. I'd really like to explore every possible safe avenue before following that path.
I have done so much reading through the posts on this site. I can't thank you all enough as it has been invaluable. I'd really appreciate any help and guidance with this.
Thanks x
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please, if anyone could offer me any guidance I'd be so grateful. I'm desperate. Really desperate. And frightened.
I'm due to take the progesterone again tonight. Last month I took it (started on 200mg, ended up going down to 100 due to side effects) I went mad and tried to take my own life. A&E, Police involved this time, as same thing happened a month ago. Really traumatic for me and my poor partner.
GP won't prescribe me 100mg due to advice from NHS Oxford Menopause Clinic. I wanted to suggest to her could I try and arrange for private scans, even in the short term until I can maybe try/find something else.
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I am sorry as I do not have any advice but I wondered if emailing Dr Curry would help? She is the menopause DR on here and I have read many people have found her so helpful. I apologise if that is of no help. I am really sorry you are suffering with this.
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So sorry Logie for your troubles. Like you I have an extreme reaction to utrogestan but I can get to 7 days (just about) x 100 per cycle. This is the system pioneered by the late Professor Studd for extreme intolerance so is used by quite a few of us. You must have regular scans to make sure it’s working also. I would say to you even on this regime if you start to feel suicidal you must stop taking it immediately.
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Can’t offer any other advice except to say could you do this until you see your specialist? Also there is a thread on alternatives on here started by Mary G please look that up.
Wishing you well and let us know how you get on x
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Thank you Flossieteacake and Perinowpost so much for replying, kindness and for your suggestions, I really appreciate this.
I hadn't thought about Dr Curry so I'll do that, and after discovering the Studd regime here and on his website, almost anticipated being put on that, so was surprised when I was told 200x7days was the lowest dose they would do. GP won't prescribe 100x7 days. I was hoping to send her Studd and Panay's research about it. I ended up in A&E after 6 days on 100 last time, so it isn't ideal. I haven't tried levonorstrogel yet and don't want to risk a coil just yet in case I have a similar reaction and can't get it removed.
I have read Mary G's posts and wanted to message her to ask if she could share her private dr's details, but don't know how to send a DM on here. Any advice would be appreciated.
Thanks so much x
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I think you can click on the members name and it takes you to their profile to send a message. I know some forums have a system were you have to have a certain numbers of posts before sending a private message. Maybe you could start a thread with the members name in it to ask? I am not sure if that is allowed but hopefully somebody else will know.
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Hi Flossieteacake,
Thank you for explaining this, I did try to see if I could send a DM to Mary G but nothing worked, so my lack of posts could be it x
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I imagine that would be the reason you could not send a message. Hopefully you can ask them on their thread or even start a new one.
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Thank you, that is a great suggestion. Being on a forum is a new thing for me, along with the HRT. Lots to learn.
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In that case you are doing amazing. You already know how to start a thread. That took me ages to figure out. :)
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Thank you! :) we've got to try.
This place has been such a godsend.
And I'm so grateful for your replies. It's been quite a lonely and frightening experience so far. Your messages and advice have helped me in many ways.
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I am touched I have helped you. I too think this is a lonely experience. I feel it is something very hard to understand unless you are going through it.
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So sorry to hear of the issues you suffered and the lack of help you have received from the medical professions.
I also can't take Utrogestan orally or vaginally. After 3 days it makes me so unwell that I can't work or function.
I did convert to alternate days as i found references to elsewhere, which was better but still not tolerable. As you found, g.p. threw a wobbly at this though.
Therefore, I tried Hormone Health because its head is Nick Panay who g.p. worships. His waiting list is too long though so I saw another doctor there.
I am taking Crinone vaginally twice a week and am back to feeling almost normal.
I can recommend Annie Hawkins there who is on the BMA list. Although I can't say whether she has experience of what you suffer
Best of luck
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So true Flossieteacake.
Thank you so much AKatieD, I really appreciate your suggestions and sharing your experiences. Alternate days didn't work for me either. I haven't been offered Crinone yet so that is one I can suggest and it gives me some hope too.
I feel a profound mood change after the first dose. It's like a Jekyll and Hyde scenario. There is no way I can work or function either. Following the dr's insistence of taking all the progesterone, I have got to day 6 and then developed full-on allergy symptoms as well. I've stopped taking it after that as I can't take any more, and thankfully have decent bleeds so far. I've been signed off from work for months now.
It's so distressing. I fully appreciate taking progesterone is essential to protect the womb, but I find myself now having to advocate for myself and keep saying to the GP/gyne that I/we need to protect the whole person, or protecting the womb might be tragically academic. It's like they can't hear it. And the other part of the madness is the A&E staff think it's crazy I'm being told/prescribed/taking something that has such a risky effect.
This whole thing has been a brutal education so far.
My heart goes out to everyone that suffers with health issues, and difficult side effects from meds, and all the women before us that didn't have access to anything to help them.
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It is just terrible they are not listening to you and doing what is best for you. I am finding I cannot tolerate progesterone too. I had to take off the patches on Friday as I became suicidal. I have an appointment on Thursday with a meno clinic as all the drs at my surgery do not know what to say or do.
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Have you tried anything apart from utrogeston? It may that you can find one you tolerate better. Are you peri or meno? If peri and have reasonably regular periods of your own reducing or skipping utro is a lot less risky (and maybe less risky than taking it).
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Logie, I have just replied to you on my thread in the Alternative Therapies section.
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Hi Logie
Have I missed something but I can't see where you are in menopause ie what your natural cycles were doing before starting on HRT, how old you are and whether you are also taking oestrogen, and if so what dose? This will help us understand your situation and see if we can help. You most definitely should not need to go to a private clinic and depending where you are there are specialist NHS menopause clinics that can help you eg the Chelsea and Westminster - and I think you can get referrals from outside the area thoigh I imagine there will be a long wait.
Also did you say whether you were taking the Utrogestan orally or vaginally?
I understand your predicament and the balance between protecting the womb and protecting you as a person but it sounds like your menopause clinic is failing in the latter?
Hurdity x
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Flossieteacake, I'm so sorry you're also having such awful experiences as well. I hope you can be okay and you're in my thoughts. I hope Thursday's appointment is helpful and useful to you.
Thank you Sheila99, I've tried norethisterone in Evorel sequi which was profoundly bad. This was as an alternative to Utrogestan which I started off with. The private Gynae I saw had suggested Femoston, but the GPs have cautioned against this, and wanted me to try a conti patch, which was the plan, until the Oxford Meno Clinic (NHS) replied and suggested I stay on a sequi plan and that I'm looking at a hysterectomy.
Thank you Hurdity, I take utrogestan vaginally, and would bleed very lightly for 2 days every 21-24 days pre-HRT. I'm on Evorel 50 patch after starting off with the Oestrogel. The seeking of private help is to reduce the wait times. I cannot afford to keep experiencing this level of risk and trauma, and putting my partner through it as well. I've not worked for months and would dearly love to get back to work, which I miss. I'm currently on a 6-month NHS waiting list after being referred to the menopause services in my county.
Blood tests done today to check estrogen levels and with the view to introduce some testosterone into the mix. I was sensitive to the progesterone in my own cycles pre-perimenopause, struggling with mood difficulties.
I don't know if the fact that both myself and my partner are mental health clinicians leads my GP to feel that the psychological impacts are taken care of and so doesn't address them with me (which they are as best we can, but that's not the point, I'm a patient in this experience and need help). I know it can be hard to hear emotional distress, and a lot of professionals and services are feeling burned out, but it seems a number of us are being failed by some of the services we access. I find this both heartbreaking and infuriating.
Thank you all so much for your time and sharing. You're helping me, and my partner so much. We're very grateful.
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Thank you for your kind words.
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Hi Logie
Thanks for filling us in on more details.
The first thing I would say - is to ask how long you have been taking HRT of one sort or another - because if your periods had become coser together before you started HRT - this is medically classified as the Late Reproductive Stage - which is when the ovaries are still functioning but hormones have begin to go a bit awry leading to some more extreme pms symptoms in some women. So this is the last stage before peri-menopause proper when cycles begin to vary by more than 7 days from one cycle to the next. Obviously this isn't a sudden occurrence....
That being the case and depending on your age I wonder if you or your clinicians have considered using one of the contraceptive pills designed for menopause - so they contain estradiol as in HRT but also a gentler progestogen - one of the more modern types - that cause fewer side effects? This might suit you better than utrogestan because with Utro you have to take a large dose in order to protect the womb - and this would be the case whether you saw a private doctor or NHS. I think you want to be wary of any of the private off-beat clinics that treat celebs at great expense and promise the earth... though I do understand your predicament and desire to be well as quickly as possible, of course!
Anyway the two pills I am talking about are QLAIRA and ZOELY.
In addition I don't understand what you meant re the docs "cautioned" against Femoston? The progestogen in this pill is very similar to natural progesterone (which Utrogestan contains) but has been modified so that it lasts in the biody for a longer time and therefore lower doses are needed? Women have reported feeling good with this product compared with others that have the harsher, testosterone derived progestogens.
Just a few suggestions before you go down the private route - if you want to consider them?
Wishing you all the best with your treatment, whatever you choose
Hurdity x
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Hi Hurdity
Thank you so much for your time, thinking, recommendations and care. I am deeply grateful and will share this with my GP when I speak to her, and ask. Are Qlaira and Zoely to be used in the same way as for contraception?
The impression I have is that as I've had reactions to HRT that aren't straightforward, she will run everything by a regional NHS menopause service, which offers specialist advice for primary care clinicians, to reduce waiting times and the need for some referrals. It was through this I was told they wouldn't prescribe any lower than 200mg Utrogestan for 7 days.
Sorry I missed my age, I'll be 45 in a few months. The gynae I saw had also said I was in a late-stage and my 'ovaries are winding up'. It's good to know what's on the horizon with the varied cycles.
I was surprised too by the GP (having consulted with other GPs) not offering me Femoston, as the private gynae (also NHS consultant) had suggested it as an option. I'll dig a bit deeper at the next appointment as the shock of breezily being told I'm looking at a hysterectomy stunned me (especially as I'm only at the beginning of all this and haven't tried all the options).
What I have learned is that there is definitely something in the ratio of estradiol to utrogestan that influences how potent the mood and allergy symptoms have been. I've been on HRT about 6 months now, having had different combinations each cycle. The worst for me was when I was on an Evorel 75 patch (last month).
This time around I am on a 50 patch (which I feel much better on generally) and have managed to get to x7 days on 100mg. The last two days the symptoms started with the last day being very challenging in terms of mood. Wonderfully, no allergy symptoms this time around. The first since starting HRT.
I really hear you on the potential perils of private care, there is a lot of it in my field too. (I worked for the NHS for years before becoming ill).
Thank you again x