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[Logie]

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

[Logie]

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.

[Flossieteacake]

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.

[Perinowpost]

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.
.
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

[Logie]

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

[Flossieteacake]

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.

[Logie]

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

[Flossieteacake]

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.

[Logie]

Thank you, that is a great suggestion. Being on a forum is a new thing for me, along with the HRT. Lots to learn.

[Flossieteacake]

In that case you are doing amazing. You already know how to start a thread. That took me ages to figure out.

[Logie]

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.

[Flossieteacake]

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.

[AKatieD]

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

[Logie]

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.

[Flossieteacake]

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.