Help for PMDD - DD is autistic and really suffering

[EachPeachPearPlums]

Hi, wondering if anyone can help. DD (20 years, she is autiHD) has always suffered terribly with her periods. She will be fine for a couple of weeks then suffer from awful PMS symptoms, extreme moodswings, self-harming, meltdowns, even feeling suicidal etc. It is COMPLETELY correlated with her menstrual cycle. She can't take the pill as she suffers from visual migraines - GP totally refused to prescribe it a few years back for her acne as there is a risk of clotting. DD has been back to GP to try and explain her symptoms and they were really unsympathetic and made her feel like a hypochondriac and she was really upset. She was offered the coil but she doesn't want to go through with this as it is painful and her pain threshold is extremely low. Also it makes her feel queasy just thinking about it! Can't go with her to GP as she is at uni quite far away and anyway she wouldn't want me there 🙃

They have suggested anti-depressants but just to take them for 2 weeks per cycle. To me this seems weird as I have been on so many anti-depressants over the years. And if I missed a single dose it would make me really ill. Also it took a while to get used to the dose and I had to build up over 3, 4 weeks. Also she has has very bad experiences with ADs in the past and CAMHS said she shouldn't take SSRI's as they don't agree with her.

DD has read that increasing protein in her diet (she is vegan) can alleviate the symptoms but it doesn't seem to have made much difference. Is there anything else that can be done? Any natural remedies / supplements? She said to me that the only option apart from the above is to have a hystorectomy - Obviously this would not be great for a 20 yr old who wants kids one day. Thank you 🙏

OMG really? That is so scary re. Progesterone only pills. Sorry you are also dealing with this horrible condition x

I don't think that they would prescribe diazepam for her, when she was under CAMHS her nurse suggested it for when she was going to have a meltdown and the psychiatrist (who was awful tbf and left soon after, having pissed off most of the SEN parents in the area) said no because it is addictive. In my experience GPs won't prescribe any benzos on repeat; I believe the royal college of GPs or whatever their governing body is, has said they should only be prescribing them minimally as a one-off. My friend got prescribed lorazepam for a flight because she is scared of flying. She had another flight within 6 months and they wouldn't prescribe. Suggested it was drug seeking behaviour. Which it wasn't.

I think a low dose would really help and would certainly be better than taking anti-depressants for 2 out of 4 weeks. But I really don't think they would prescribe it.

I have PMDD, and cannot tolerate progesterone. I had 2 courses of zoladex injections to shut down ovaries temporarily which was heaven for me. They only let me have them for six months at a time. I am on the waiting list for a hysterectomy and about to start another course of zoladex while waiting for my operation. I'm older than your daughter and have had children so I'm happy to be having a hysterectomy, but zoladex or similar may be helpful. She really could do with being referred to gynaecology, has she ever asked to be referred?

@Feduptosaytheleast thanks for your reply. Not heard of Zoladex. Is it the same as the contraceptive injection? I guess my fear and my daughter's fear would be shutting down her ovaries would make it harder to have kids in the future.

She hasn't been asked to be referred to gynaecology but she is very compliant, doesn't like to make a fuss etc. Not good at advocating for herself at all 😔 so when the GP told her to buzz off and was really dismissive she just accepted it.

@Feduptosaytheleast Did you have tibolone while on zoladex? And how long did you have to wait between the first six month course and this one? I'm waiting for my first zoladex injection. I've been told I'm only allowed six months, so I'm worried that if it works my life will be thrown into chaos again when they take it away. I've been offered hysterectomy but I live alone so a bit concerned about how I'm going to manage with no one to help.

Same. Adhd and asd and pmdd

What works for dd

75 mg sertraline 3 weeks of month
100mgs bad week

Transaxemic acid
Good quality pain killer taken regularly.

The pain we are still trying to improve but the mood swings have been hugely helped by the sertraline.

Also She tried the pill but it gave her the worst panic attacks.

Zoladex is a gonadotropin releasing hormone, it has no progesterone or estrogen in it. It only temporarily shuts down the ovaries so when it wears off after the last injection the ovaries kick back in.

@EachPeachPearPlums zoladex puts the body into temporary menopause. It's unlikely you'd get pregnant while on it (although contraception is still advised) but doesn't affect fertility once it's worn off.

I had PMDD - progesterone only pills were awful and made everything worse.

Yes I did have tibolone alongside it, I had none of the side effects of zoladex because of this. I last had a course in June 2022, last injection December 2022. The course before that was in 2020. I do know from a lady in a Facebook group who has been on it for over a year for her endometriosis, but it is very rare they go over six months at a time. I will say it took a while for my PMDD to kick back in after my second course, I had almost six months of normal periods and only mild pms symptoms after stopping, but not long after my first course!
It's hard when you're on your own, I'm lucky to have my DH and grown up children as a support. Do you have any friends who could help out?

She needs to try and make a gynae referral happen.

Look at the NAPS website OP too. Lots of info there.

Try a different doctor. I get visual migraines and can take the mini pill (cerazette).