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[sue1975]

Hello everyone x I’ve been a lurker on this forum for quite some time 🙈 I am here to ask for some help, of course!

My question is, with the history I describe, what do you think a BMS consultant might offer me at an appointment and what questions could I ask?

The short version of my story is:

-severe and worsening PMS with suicide ideation

-heavy menstrual bleeding with clots and flooding, pelvic, back and leg pain and heaviness (awful!)

-severe PND with intrusive thoughts and SI

-tried Evorel Sequi for 3 months…progesterone sent me into despair

-tried Mirena + Evorel 100. This was for cycle suppression for PMDD as per Nick Panay/IAMPD. Cyclical problems replaced with Fatigue, depression, not functioning at all. Time off work, Stage 3 disciplinary + concerns for welfare after breaking down multiple times.

-removed Mirena and stopped oestrogen. Only thing in my control!

-The fatigue and depression lifted on the third day! I bled that afternoon.

-Had a few good days and cleaned my bathroom and kitchen!

-10 days in, anxiety ramping up and now bleeding again but without relief. Just a headache, pelvic cramps, back and thigh pain.

I just can’t do it any more!

I am going he will offer me chemical
Menopause with a view to hysterectomy.

If not, a trial of lutigest.

Please could you help me get the most out of this appointment with Mr Rowlands (Spire, Wirral)

[Dotty]

Hi write everything down so you don’t forget anything. I used to take a notebook to all appts with all symptoms written down and I used to write questions down .

Hope your appt goes well x

[Konijntje]

We have some overlap in our symptoms and things we’ve tried. So, I am going to tell you what I’m trying, just disregard if you don’t want to go this route.

I am progesterone intolerant and also respond badly to mirena. I tried many different things and recently switched to Drovelis (bcp with a bio identical estrogen), as it contains drospirenone and is often prescribed for women with PMDD and also for women with endometriosis (what I suspect I might have, seeing some of my pain symptoms, but isn’t confirmed). I’m only 2 weeks in, so way too early to say if it is working well and I’m having annoying side effects. However, mood wise, I can tell it’s nowhere near as bad as progesterone or levonorgestrel (mirena) for me. My second choice would be qlaira (it has dienogest/estradiol), which is a similar friendly bcp and registered upto age 55. (There is also Zoely, wich has nomegestrol/estradiol, but for me that is third choice, as I want to find a progestin that I could keep using post menopause and nomegestrol has a less favourable risk profile with longterm use and isn’t available as standalone I think).

It’s weird going on birth control at age 50, but these pills are more a combination of birth control (suppressing cycle) and hrt (because of the bio identical estrogen). Again, you might not see this as a good option in your case and can just disregard. But maybe this might be another option to discuss at your appointment.

[Mary G]

Sue1975, I would say you are severely progesterone intolerant going by your history.  This needs a very specific approach and a specialist who understands reproductive depression and is prepared to be flexible with progesterone dosing and prescribe off licence.

The late Professor John Studd was an expert on progesterone intolerance and reproductive depression so I recommend you do a search and read his numerous studies and recommendations re HRT regimes for progesterone intolerant women. 

Have you actually had a consultation with Professor Nick Panay?  He has taken over Professor Studd's clinic in London so it might be worth having a/another consultation with him even if it's just a one off. 

Alternatively you could try using bespoke compounded progesterone.  I used it for quite a while found it to be completely free of side effects so I would definitely try it before having a hysterectomy.  The NHS don't approve of compounded hormones but I found a 50mg dose of compounded progesterone every day worked perfectly for me and my uterine scans were always around 3mm. 

If you literally can't tolerate any progesterone at all, you will need to have a hysterectomy but it's important to try every other option first because it's a major operation.

I hope that helps.

[sue1975]

Hi everyone x Thank you so much for all of these replies. The information and advice is really helpful 🙌🏻

I’m sorry it’s taken a few days to get back to you…they were bad ones but I’m on the up again now 😅

It’s also helped me to know I’m not on my own with this and there are people who understand and want to help ❤️

[Fusseh]

Hi Sue
I just wanted to say have hope this will get better. You are not alone and there is help out there. You are not your hormones or your thoughts. You must be so strong to have got this far. It hasn't been easy, far from it. Just keep going. You'll get there. 

[sheila99]

Tibolone might be another option which can work well for those intolerant of progestogens.

[sue1975]

Hi Sue
I just wanted to say have hope this will get better. You are not alone and there is help out there. You are not your hormones or your thoughts. You must be so strong to have got this far. It hasn't been easy, far from it. Just keep going. You'll get there. 

Thank you so much for your understanding and soldidarity ❤️

It really hasn’t been easy x

I will keep going-I have some hope now, at least! xx

[sue1975]

Tibolone might be another option which can work well for those intolerant of progestogens.

Thank you, Sheila x I will ask about Tibolone xx

[sue1975]

Hi everyone x

I had my appointment today and the doctor was amazing! He understood everything that I said-unbelievable! I have been living this for so long and feeling as though I’m in a bell jar…nobody could hear me!!

Having listened to my history…I won’t repeat because you have all read it (thank you 🙏🏻), I will be going to take Prostap with utrogestan and oestrogel.

He is hopeful that I will cope with that but said that the next step would be hysterectomy.


Keep your fingers crossed for me and I’ll let you know how I get on xx Thanks for your support and advice ❤️

[Dotty]

Thanks for the update and I’m glad you had a good appointment. x

[Kathleen]

Hello sue1975.

Thank you for updating the forum,  I am sure many ladies will benefit from reading about your experience.

Take care and let us know how your new regime works out.

Wishing you well.

K.

[Loopylou1017]

This sound just like me many years ago. I eventually was under Nick Panay who was my saviour. He supported me all the way through PMDD and then through Menopause.
Hopefully new medication will help. Eventually I was put onto zoladex injections to see if a hysterectomy would work.In my case the moment I was put onto zoladex injections the hormonal issues stopped therefore a full hysterectomy was the answer.
At 30 I had a full hysterectomy and was put straight onto estrogen patches. I finally felt so much better. Keep fighting and try and stay strong, you will feel better soon.

[CrispyChick]

Hey looplou can I ask how Nick Paney was?

I'm in a terrible state. Unfortunately chem meno made me worse not better. I react to every hormonal change. So I'm looking for stability. Which at 49 is impossible.

So I'm looking to see Nick Paney as a last resort. Any advice? Thanks

[sue1975]

Hi again everyone x

Just to give an update and a reply to Crispychick.

After three months on Prostap and addback, I’ll be having a THBSO on 19th December. The Prostap eventually got rid of fluctuations which has helped a lot but I seem not to be able to tolerate ANY progestins at all, so the surgery will mean I can have oestrogen only HRT and avoid the Prostap as well!

The only symptom I’m left with now is face pain (it moves from one side to the other!) and a burning sensation in my tongue!

I’ve no idea if it’s hormonal but it does get me down a bit..naproxen and paracetamol take the edge off but it never goes away completely 😭

I suppose, after surgery, the “landscape” will be simpler and we can try to work out what’s causing it..

Any experiences and treatments for this kind of pain would be really welcome!!

@Crispychick - I don’t think Nick Panay’s private list is taking new patients at the moment but I do know you can choose a consultant at his private clinic, hormone health (https://hormonehealth.co.uk/team/prof-nick-panay).

It’s also possible to be referred to the NHS clinic that he heads up at Chelsea and Westminster but I think there is a lot of triaging before a consultant is involved there, from what I can gather.

Have you considered Paul Briggs at Liverpool Women’s hospital? xx