PMDD?? Long post please bear with me - Endometriosis UK

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PMDD?? Long post please bear with me

Pinkyandthebrain profile image

Does anyone else here suffer with PMDD?

4 years ago I had an endo diagnosis and partial removal: endo on pouch of douglas was left where it is as surgeon advised dangerous to start messing with bowel.

2 years ago I was diagnosed with depression which I thought was maybe due to the endo diagnosis.

Last year I had a miscarriage in July and have been struggling with PTSD due to what happened and what I saw.

This year I am realising one of the reasons I felt so happy when I was pregnant is because I wasn’t having a period; I wasn’t having any mood swings or insane thoughts for the first time in a long time. I was able to halve my antidepressants without any side effects.

It’s been a few months since the miscarriage and I’m feeling like I’ve come to terms with what happened now and I’m seeing a therapist who specialises in trauma. But every month, around a week before my period, I start to feel insane. Like I’m not real - it feels like the part that’s ME goes away somewhere and my body is just moving about on it’s own, or possessed by something weird and miserable.

After reading about PMDD I’m convinced this is what’s happening to me and I wonder if there’s anyone else out there who feels the same.

Thank you in advance if you read all this and if you reply. X

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14 Replies
lakeside123 profile image
lakeside123

I’m sorry you go through this each month :( I also have endo on the pouch of Douglas and have been advised not to operate. I do not experience PMDD but I am wondering if it would be helpful to discuss with your therapist any techniques for emotional regulation? It may help you to feel a little more control at that time of the month if you feel you have some coping strategies. X

Pinkyandthebrain profile image
Pinkyandthebrain in reply to lakeside123

Thank you for replying, sometimes it all feels so lonely and it’s nice to talk to someone who even has the vaguest idea of what it feels like.

I’m considering pushing to have the endo removed from PoD this year as I’m hoping it might lift some of the pain and other symptoms but it’s all so much to weigh up. X

lakeside123 profile image
lakeside123 in reply to Pinkyandthebrain

I’m just wondering if you have tried the mirena coil? I had mine fitted after my lap and haven’t really had a period since, it hasn’t helped with the endo pain (I get the stab in the bum too!) but, without periods maybe less PMDD? Just a thought?

Did you gynae mention anything about surgery on POD affecting fertility? I’m waiting until I’ve had (hopefully) children I think just in case...

Pinkyandthebrain profile image
Pinkyandthebrain in reply to lakeside123

Well I’ve been trying to have a baby for a while now so am not looking into any contraceptive treatments - which is a pain (no pun intended 😂)

I hadn’t heard anything about surgery in PoD affecting fertility so will ask about that at my gynaecology appointment next week, thank you!!

I find it so hard to know all the things I need to be aware of and although my gp is very kind, they don’t necessarily seem to understand the extent of what I’m dealing with.

lakeside123 profile image
lakeside123 in reply to Pinkyandthebrain

Ohhh okay. Definitely check with gynae. I completely understand, it’s a minefield isn’t it. I wish you the best of luck x

Crafter23 profile image
Crafter23

Hello,

I can 100% relate to this, I have PMDD and go through exactly the same every month, I was previously prescribed Duoxletine by my GP which did help my symptoms for a short while . It has really tested my relationship with my partner. It is like a switch, I could be fine one minute and then I feel so low, and miserable 😩 I am irritated by the smallest thing and just do not function. Whilst having irrational thoughts that are so far from reality but I am convinced and get hauled into a downward spiral.

5 or 6 years ago I had Endo removed ( burnt out only) from my pouch of Douglas, and now waiting again for another Laproscopy as we believe it has decided to come back! They will be checking my bladder this time too. The consultant has said this time he would be cutting it out. I have a lot of pain down by Coccyx area - can you relate to this? I find it hard to sit at times, go to the toilet etc.

I really hope you can get some more help, to keep you on a more level playing field.

Take Care xx

Pinkyandthebrain profile image
Pinkyandthebrain in reply to Crafter23

Yes! Sometimes it feels like I’m sitting on a knife?! I get pain through the whole pelvic area, bladder, and like going through to my bum 🙈Also completely relate to the ‘irrational thoughts’ and being irritated by the tiniest things. It feels like the whole world is getting on my nerves, I also get really forgetful and paranoid?!

I hope you get some joy with having yours removed and fingers crossed you have less pain afterwards. Xx

Crafter23 profile image
Crafter23 in reply to Pinkyandthebrain

Omg yes! Sometimes it feels like someone is up there have a twist and pull to get it all out 😖

Hopefully if you can speak to your GP they might be able to help. I am finally back under Endo Clinic but am limited to treatments I can have.

I wish you all the very best too xx

I've not been officially diagnosed with endo yet, I'm waiting for my lap (been waiting 20 years to be finally listened to).

But the symptoms you describe sound like you've been reading my diary!

That "knife-in-the-bum" sensation & having to sit so slowly/ stand again so slowly are horrendous. It's at those times I end up waddling like a penguin. I find this coincides with ovulation - do you?

Gonna sit on this thread & see what others have to say.

I haven't looked into PMDD yet, but I can identify with the complete shift in emotional, rationality & spiralling negative thoughts & feelings before my period is due. I feel like 2 different people sometimes.

Xx

Pinkyandthebrain profile image
Pinkyandthebrain in reply to PurpleSynesthesia

Yes; 2 different people is a good way of putting it and it feels so tiring!

Really feel for you if you also get these symptoms, it’s dreadful and I also understand how it feels to wait SO long for a diagnosis - just adds insult to injury really.

My knife pains did used to only be during ovulation but I now get them around the clock which is nice - lol, I realise I’m sounding very negative and ranty, in real life I try to be more positive but I have to let it out on here sometimes!

Good luck with your lap, I hope you get some respite from your symptoms xx

Pinkyandthebrain profile image
Pinkyandthebrain in reply to PurpleSynesthesia

Also ‘waddling like a penguin’ honestly, this is me 😂😂😂

PurpleSynesthesia profile image
PurpleSynesthesia in reply to Pinkyandthebrain

Thank you - I think this is a safe place to rant otherwise it feels like we're burdening our nearest & dearest doesn't it? No matter how great they might be.

All the best to you too xx

Afrohair profile image
Afrohair

It's hard to know if it's pmdd but you know your own body !I had a misscarrige just over a year ago and it was very hard for me I'm pregnant again (sorry if that's sensitive of me)but I'm dreading my period coming back and for a long time I enjoyed the advantage of not having a period due to pregnancy last baby lost at 12.5 week I had different mood swings After this and I definitely had irritability a lot with endo because of the pain I wouldn't even want my partner to touch me not a hug a kiss a pat on the bum it did affect our relationship to the point he was asking when will you be cured?you will be cured soon let's get over this hurdle it was hard telling him only pregnancy will give me a small break but then I may slump into depression once the baby arrives I changed my diet which helped massively but since pregnant I've re introduced a lot of things I'm not really supposed to eat as my way of revenge on endo I hope you are getting a lot of support from the team at the hospital I found them really helpful all the best x

Pinkyandthebrain profile image
Pinkyandthebrain in reply to Afrohair

Really wishing you all the best in your pregnancy and birth; it’s nice to know there are some success stories out there and hopefully it will happen for me one day too. Wishing you and your baby the very best Xx

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