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[cjmca]

I’m really frustrated as my previous meno consultant, who was wonderful, left the clinic she was working at and I hurriedly had to find someone else.

I’m autistic, ADHD, hit premature meno in my 20s (post meno levels of estrogen and progesterone at 27 - undetectable
blood levels.  Difficult to now find remnants of ovaries on a scan, diagnosed Premature Ovarian Insufficiency 15+ years ago).  All tests carried out, genetic etc, no reason found.

I am now 42, and have been on bioidentical HRT for a decade.  I suffer from PMDD-like symptoms on the pill, and on bioidentical progesterone if too much is prescribed and/or my estrogen drops suddenly (patch falls off and I don’t realise, for example).

The PMDD-like symptoms are terrible - I’ll have sudden intense feelings of doom, won’t be able to control my emotions, cry non-stop, once almost broke my hand from punching a wall, suicidal ideation.  It is horrible.

I am sort of baffled that I can’t get a PMDD diagnosis because “I don’t menstruate”.  No, I don’t - but instead of creating the hormones myself, I’m plonking them on my skin - my brain surely could react the same way?

Anyway I saw a new meno doc yesterday and it left me in a state of complete confusion.  They said they don’t think I have premature ovarian insufficiency because I have withdrawal bleeds and my womb lining was 3mm on last scan.  But I’m on HRT…? So I have withdrawal bleeds and womb lining build up because of estradot patch and utrogestan… what am I not understanding here?

I found it quite upsetting TBH, it made me feel like I was incorrect for saying I can’t have children.  They then asked if I have any kids. 

They came across as friendly, and well-meaning, but I left the appt very upset and addled.  I also felt that when I mentioned I was autistic, my own input was no longer taken on board, as if I’m not capable of knowing my own body.  With almost 2 decades of HRT in all the forms, I feel pretty well versed…!

They also told me that utrogestan used rectally “offers no uterine lining protection but will give you all the nasty side effects”.  How could it do one without the other? Either it’s absorbed or it isn’t?  And so far it’s the only method that’s lessened PMDD for me to a safe level, and I have heavier withdrawal bleeds than via vaginal use, so I’m completely stumped.

I left with a prescription for evorol conti which I now realise has synthetic progesterone that is androgen-heavy - big no for PMDD, previous meno doc avoided it like the plague for me. 

I am at a complete loss and spent yesterday eve crying, wondering if I’d been misdiagnosed with premature ovarian insufficiency and actually could have had kids. 

Sorry for long rambling post, just feeling very lost with it all. 

[laszla]

A couple of points in haste that come to mind:
I found Agnus Castus very helpful for PMS and it is also recommended for PMDD. It was advised to me by Nick Panay and yes you can take it even if on HRT.
Secondly, if you are reactive to shifts in hormone amounts I would actually measure your serum levels to see how much you're absorbing rather than how much you're taking which are two different things. I have found tracking serum levels v helpful in identifying good numbers for me - I need oestradiol to be pretty high and although utrogestan intolerant for quite a long time, switching to continuous was much more tolerable.
Saying that rectally administered utro offers no uterine protection is rubbish, I despair of some of these doctors.
Hopefully someone else will be long to advise re premature ovarian insufficiency though I would say what you say makes sense.

[bombsh3ll]

I am so sorry for your experience.

Particularly for the insensitive comments about having children - this is something that really resonates with me as I was left with untreated appendicitis for 3 weeks as a young woman which destroyed both my fallopian tubes, rendering me sterile.

I have lost count of the number of times I have been inappropriately asked if I am pregnant, breastfeeding or received an unsolicited lecture about contraception when at the nurse for something else. My GP even blocked me from participating in a COVID trial because of my "reproductive potential".

Comments like these are beyond callous - at least read the patient's effing medical records!

To reassure you, from what you describe, it sounds very unlikely that you would have been able to conceive with no detectable ovarian hormones, or even any visible ovaries!

And even if you had retained some capacity for ovulation, body identical hormone replacement is not contraceptive, so it's not like you took a course of action that would have prevented pregnancy from happening.

Regarding the progesterone, in the words of professor Studd, cyclical progesterone is a pharmacological model of PMDD.

As in it really doesn't matter where the progesterone comes from, if you respond negatively to it the clinical picture is the same.

It is also very concerning that your new provider doesn't understand the difference between a withdrawal bleed, which an 80 year old would have if she had a uterus and took sufficient estrogen and progesterone, and menstruation.

Utrogestan is clinically effective if used rectally at the appropriate dose - this has been established and it is sometimes used this way both in menopause, IVF and miscarriage prevention, as it is more effective than oral and women bleeding in pregnancy or following IVF understandably don't always want to use the vaginal route.

It just isn't usually used this way long term due to patient acceptability. If it works for you that's fine - they don't have a camera in your bedroom and you can always get a reassurance scan now and again to check your lining.

Going forward though, you really need to find a new specialist. You could also consider tibolone which often works well for progesterone intolerant women.