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[cjmca]

Hi all,

I just wanted to see if anyone else has suffered from PMDD?  I'm a bit of a complex case hormone-wise, in that I went into super early menopause (only ever had 4 periods my whole life).  When the early meno hit, I was only offered synthetic hormones in the form of the pill, which resulted in what I now know to be horrendous episodes of PMDD (suicide attempts, suicidal ideation, feelings of complete hopelessness, self-hatred, crying for hours at a time, intense feelings of despair, self-harm...) 

Thankfully I eventually got put onto bioidentical hormones, however I've had a few really bad PMDD episodes again, and am realising it's been whenever I take more than a few days worth of Utrogestan.  I tried using vaginally and orally, no difference to the PMDD.  I got to the point where I was very close to having a hysterectomy, which I really want to avoid because of previous bladder problems - just don't want to go poking around in there/disturbing things. 

I had a scour of the Reddit PMDD forum, and found a few ladies who had success with magnesium, B6 and antihistamine supplementation.  I've found if I take these alongside 100mg Utrogestan in the evening, it keeps the horrid PMDD episode at bay.  I've so far managed 7x nights on 100mg Utrogestan.  My consultant wanted to increase this to 200mg for 2 weeks - yikes, had the worst PMDD episode I've ever had.  I had done 6x nights at 100mg (had some tabs left), then upped it to 200mg and after 2 doses, BAM.  PMDD hit in a big way the next day.  Literally the day after I stop Utrogestan, I'll go the polar opposite - calm, happy, motivated, positive. 

I think I'm going to have to stick with having a withdrawal bleed monthly with 7 days of 100mg utrogestan every month, because it seems that if I take a higher dose/take it for longer, the magnesium/B6/antihistamine isn't enough to keep PMDD at bay. 

Has anyone else had any experience of this with progesterone use, and found anything else to help stop PMDD from occurring?   Ideally I'd love to be able to have a withdrawal bleed every 3 months instead of monthly, but that means taking 200mg utrogestan for 2 weeks at a time, and not to put a finer point on it, but that could be utterly disastrous.  Am still sat here a week later after the last episode covered in bruises from where I absolutely pummeled myself.  My legs looked like they've been whalloped by Katie Taylor 

[Peri2022]

Hi there, I’m afraid I won’t be hugely helpful but wanted to reply so you don’t feel alone - PMDD can already be so scary and isolating.

I’m 45y/o and had peri symptoms for a while until Covid really amplified them. Suddenly I was having worse and worse PMDD until I finally felt I really had lost my mind! Glad to say that the oestrogen part of HRT has (mostly) sorted me out but I was scared of utrogestan as I’ve not been great with progesterone in the past. So far I’ve just tried 100mg vaginally for 12 days (not enough I know!) and I seemed ok with that so next month I’ll try 200.

I know this is not exactly your situation but just wanted to say that I sympathise hugely and I wish you all the best. PMDD and HRT are poorly understood.

There is a doctor at the Newson Clinic, Claire Crockett, who specialises in perimenopause and mental health. Louise Newson did a great podcast interview with her that you might find helpful.

Also lots of great PMDD communities on Instagram. Wishing you all the best. X

[Starfish43]

Cjmca I don’t know if you are still on here but if so I would really like to hear about bioidentical hormones. I’ve had PMDD all my life (only diagnosed at 37). Not perimenopausal and have severe anxiety. I’ve been tried on the body identical but it’s made no diff and drs have given up. I don’t know if you can help?!

[Periscope76]

Hi Starfish, did you mean to say that you are now perimenopausal?
I’ve been in the same boat, very sensitive to Utrogestan both routes and have a PMDD diagnosis.  I started low dose sertraline and it’s really helped with anxiety. I’m now in process of trying cyclogest.
Good luck xx

[sheila99]

The only hrt designed for a 3 monthly bleed is tridesta but I have no idea if it's good or bad from pmdd. If you off piste with a lower than the licensed dose of utro I'd strongly recommend you have regular scans to make sure your lining isn't building up. Might be trying cyclogest first though.

[bombsh3ll]

PMDD is difficult to treat and my heart goes out to you.

Unfortunately taking estradiol and micronised progesterone cyclically is a pharmacological mimic of the menstrual cycle, so any premenstrual symptoms you had whilst naturally cycling cannot realistically be expected to resolve on this.

If the progesterone is affecting you negatively, taking it continuously is clearly not going to be optimal either.

Have you considered the IUS which in theory releases the very low dose of progestin locally?

Alternatively there is Tibolone - this can be a godsend for progesterone intolerant women who are post menopause. (Not suitable if still menstruating)

Also the synthetic pills you tried in the past are not now the only option. I take Zoely continuously which is Estradiol 1.5mg and Nomegestrol Acetate, which is one of the kindest progestogens and because I take it every day I have no ups or downs and no bleeding at all.

Tridestra is no longer used in the UK. It involves 2 weeks of high dose medroxyprogesterone acetate, and also includes a week of no treatment at all (although you could skip this). The MPA would be a real concern for someone progestin sensitive.

[Penguin]

My PMDD was actually worse (and longer in duration) on hrt than without. It started as soon as I started taking the utrogestan each month and got worse cumulatively as the days passed. Then I had the dip from withdrawal on day 26 and that took a few days to resolve too (with the help of GABA). I ended up stopping hrt for various reasons and now it's back down to just a few days. I have no suggestions as I didn't try another progesterone as I didn't want synthetic, but as a fellow PMDD sufferer I really feel for you.

[Fizwhizz]

Hello ladies, just hopping on here to question my situation. I stopped HRT in Dec as I had a bleed. Been on if for 5 years. It didn’t help that much as I never got my hormones balanced. The bleed I think was due to excess oestrogen. Since then I’ve been diagnosed with autoimmune hypothyroidism and on meds. Whilst my thyroid has improved my mood has absolutely crashed and I’ve fallen off a cliff in terms of the daily routine etc. I’m dragging myself through the days and having intrusive thoughts and symptoms of disassociation. It’s quite scary to feel this way. Like my foundations have been swept away. Not sure if this is menopause symptoms now or something like PMDD. It’s horrible feeling this way.

[bombsh3ll]

Hi Fizwhizz,

PMDD = premenstrual dysphoric disorder.
No menstrual cycle, no PMDD.

However you probably do have some form of hormone sensitive mood disorder, exacerbated by the loss of your sex hormones.

The only way you will know if this is helped by HRT is to restart it, allow at least a couple of months to settle and reassess.

Having a bleed is not a reason to stop HRT - yes it does need to be investigated and possibly your doses tweaked but it absolutely doesn't mean you have to lose a beneficial treatment.

Sometimes you don't realise something is helping you until you no longer have it.

Bleeding on hormone therapy is usually due to taking inadequate progestogen to oppose the dose of estradiol that you are on. It doesn't necessarily mean the estrogen is too high. 

[SarahT]

I hated utrogestan. It only enhanced the obvious severe mood swings in my cycle.

I quickly switched to the mirena coil which seems to me to give a more constant stable form of progesterone.


 After 40+ years of bad PMS perimenopause and the hormonal fluctuations took these cyclical moods to a whole new level.

the moods intensified to suicidal thoughts, mood swings that made me feel dangerous and unsafe to be alone. I knew these were cyclical.

After upping my patches to 125 and no better I spoke candidly to a gp and I went into mirtazapine AD. Initially she suggested I take them the luteal  part of my cycle, but as it aided much needed sleep and I felt better on a day to day basis she agreed I could take it daily. I only use a ridiculously small 1/4 tablet, but I know I can increase of need be.