Advice for severe PMDD and autism before it affects my marriage

[pmddTantrumasdMeltdown]

I’m on a mission of self destruction it seems and I need advice for what medication or therapy might actually work before my marriage breaks down.

I have autism and very, very severe PMDD. I’ve tried :
CBT - via nhs couldn’t get on with it at all it literally gave me headaches ? It didn’t help or caused stress and made me worse

Counselling - nhs and private. Useless didn’t help at all.

Mirena - first made me worse mood wise then really unwell then the second perforated my uterus I needed surgery and was told not have a coil again due to the high level of scarring .
Mini pill - made me feel worse but all month??
not suitable for combined pill.

Sertraline then citalopram. Several side effects and had to wean off them. Been begging gp to try Prozac but they said they’d rather I try HRT (I’m 42 no peri symptoms at all and hormone levels ok plus wary of oestrogen due to migraines and breast cancer in close family)

Anyway my PMDD is horrific and this morning I’ve had a massive meltdown and I can just see that dh can’t put up with it anymore.

Has anyone navigated PMDD alongside autism ? Is there a medication I could try that would help ? Or a specific therapy ?

Is your partner aware of all this?

CBT - via nhs couldn’t get on with it at all it literally gave me headaches ? It didn’t help or caused stress and made me worse
Counselling - nhs and private. Useless didn’t help at all.

How many have you tried? How long did you give setraline?

Yes me, and it was really bad around perimenopause. I'm so glad I'm through menopause now.

I didn't really find a brilliant solution, but I did find things that helped a bit.
Agnus castus did help me regulate my moods somewhat. I think that keeping a diary helped so I could track patterns.
Nutrition is important.
I don't know why you aren't offered prozac. It is the only antidepressant that has been any good for me.

HRT is good, but if you have struggled to tolerate the Mirena and the mini pill, then I suspect you might not tolerate the progesterone part of HRT either. You might though, especially if you get bio-identical hormones.

If they want to trial you with HRT, I dont see the harm in trying. It has so many protective factors for your heart and bones and brain.
If you didn't find It helpful, you don't have to take it forever

Four different counsellors , I don’t think regular counselling is perhaps right as they want me to do most of the talking and come to answers and solutions but I’m not equipped to do so? I feel like I need a proper assessment and targeted therapy where I’m told what to do step by step to make changes.

Sertraline I persisted for 6 weeks and the gastro symptoms were horrific? I tried 4 weeks on citalopram with pretty much the same issues and had to stop .

I wonder if they’d let me try HRT and Prozac as well as I think I need an antidepressant of some sort. It’s odd with progesterone as I was told so often that progesterone is a treatment for PMDD?!

Yes he’s aware he’s very understanding but I can see it’s stressful

I feel like I need a proper assessment and targeted therapy where I’m told what to do step by step to make changes.

If you can afford private, then pursue this as a priority

Have you been on Prozac before? Do you work? Have children?

No I’ve never had Prozac before but from reading up on it it seems to have less side effects so I’m keen to try.

I have 2 children , I don’t work

Often women with PMDD do not respond well at all to progesterone. Some find it helps, but it’s trial and error. I didn’t get on with the mini pill at all, like you it made me worse and it was all month.

I have severe PMDD and whilst not formally diagnosed, believe I'm very ND (Work in IT and tick a LOT of boxes for Autistic traits...)

Don't have kids as as soon as I got pregnant had such severe antenatal depression that it literally went into pyschosis and as there was no support at all - the choices were terminate myself (I had a plan and was writing goodbye letters to everyone) or the pregnancy. My Husband and I have not tried again, nor would we.

For my PMDD I found sertraline OK but it gave me really bad insomnia. Citalopram was awful - the lowest dose made me feel like I was walking through a dream every day and I came off that very quickly. Fluoxetine (Good old fashioned Prozac) was excellent and I stayed on that for a number of years. I literally felt like I had a wall against waves of horrible hormones crashing against me and I was able to stay stable, not have any intrusive thoughts and it meant I could live a normal life and not hide away from everyone for 7-10 days every single month. I managed to come off it and go back onto Cerazette, the mini pill - no other mini pill would work as well and I wasn't allowed the combined pill due to uterus erosions.

Now I'm in peri-menopause and knowing my sensitivity to hormones, paid (a lot of money) to see a specialist at a private clinic and I can honestly say it was such a good choice. I got to speak to a Dr for 45 minutes, tell her my entire history and even she said "You're a complex case".... We spoke about all options, all risks and she offered fluoxetine or HRT - I chose HRT as my symptoms included poor sleep and loss of libido as well as very low mood - the main reason I wanted to speak to someone as I was worried I'd start feeling like I did 7-10 days before every period.

I've only been on it for 7 weeks but it's made a massive difference. I'm on the bare minimum and it's helped so much - no intrusive thoughts, better sleep and very few night time hot flushes.

Both could potentially work for you - For me, I prefer HRT as even with Fluoxetine I found my libido took a hit and my sleep wasn't great - HRT seems to have less negative side effects.

Are you managing to parent ok?

Yes it’s fine, it’s the one thing that is ok !

So you can control the outbursts?

I’ve made a GP appt to discuss HRT and I’ll ask about Prozac again.

In the end I had a hysterectomy and oophorectomy. Life changing. But I was suicidal for 10 days of each month, so it was worth going for the radical option. I'd tried everything else apart from 100mg oestrogen patches, but the pill raised my blood pressure so we expected to get the same result with high dose HRT.

So sorry you are going through this. I'd recommend the ADHDxPMDD community on Reddit (it's not just for ADHD women).

I thought I had developed PMDD for a while and the advice on there seemed really useful, as doe the info on the main PMDD subreddit.

What I would say is with Progesterone, it could be another form could suit you better - for example, Drospirenone is said to be much better for PMDD than older generation progestins.

Lifestyle can make a big difference too, but I hope they take you seriously and give you what you need.

I was offered a hysterectomy due to adenomyosis and declined in the past now I’m thinking if it’s worth revisiting that decision. I wasn’t ready before but maybe I am now.

Thankyou I will have a look

How are you able to navigate parenting okay with pmdd?

I ask as the mood swings surely impact the way you parent/respond to things/ atmosphere in the house/patience

How is parenting manageable if you are unable to control the symptoms? Why is your DH/marriage getting the brunt of your issues?

HRT was a game changer for my PMDD. My GP was unfortunately useless as was not menopausal just peri so went private.

re ASD have you had formal diagnosis? You ideally need a psychologist not a counsellor to help with this.

Yes I was diagnosed a long time ago, I do feel that I need maybe more specific therapy than just regular counselling I’m going to see if I can find something private as it’ll be quicker I’m just not sure what exactly I need.

Are you going to answer the many questions about parenting?

My DD with severe learning disabilities has severe PMDD. She is violent, screams, throws things around and weeps 🙁.
We have tried citalopram and combined pill but symptoms still severe. We are now being offered a GnRH injection which will turn off her ovaries and then combine this with a regular dose of HRT. She is only 25 and this seems so extreme. I have not been offered fluoxetine so perhaps this is worth a go. Also the various progesterone options but if she’s anything like me, she will be sensitive to those.
It’s so difficult to manage, I hope you find a solution that works - sounds like HRT could be helpful for you.