PMDD diagnosis- all advice welcome

[flopsymopsy]

Hi,
I’m relatively young for a definitive diagnosis, but after trips to doctors and gyno it’s been given. however, I’ve struggled badly with my mental health for some years. I’ve been on sertraline and escitalopram previously, and for a long time was just diagnosed with depression. The cyclical nature of my symptoms monthly eventually led to a diagnosis of PMDD and i now take fluoxetine and lucette, a birth control thought to also help.
However, I’m struggling so much to find advice and support online. It’s desperately sad to know that this will continue to affect 12 days out of every 28 days of my life right until menopause. I’m calling out here, anyone who has any advice with how to deal with symptoms and accept diagnosis please help. The bad days are so bad, I don’t recognise myself and frequently end up distant from everyone in my life. I won’t go into my personal symptoms too much as if you know PMDD, you know it.
Sorry for such a deep one!

 

[W.T.A.F]

Hi

Sorry no advice but wish you well. I recently listened to below and it touches on pmdd.

Def worth a listen
Carherine Stocker on pmdd episode 7, Spotify.

 

[Giggling Squid]

No personal advice I’m afraid, however I have a good friend who was recently diagnosed. Im
Not sure what medication she takes, but she has been doing CBT and it has changed her life

 

[Rosalind96]

Hi, I have PMDD and it’s just the worst. It’s like a switch flicks in my head and I go from being ok to incredibly depressed and suicidal.

I’m still trying to work out what treatment is best for me but I can tell you that the birth control Eloine (called Yaz in the US and prescribed over there specifically for PMDD) has helped me a lot. It’s taken me from maybe 10 days a month of suicidal thoughts to 2/3. You’re supposed to be able to run packs back to back and avoid a period altogether but it didn’t work that way for me. I found I got PMDD symptoms and breakthrough bleeding until I took a break so I just have the 4 day break each month as intended.

Something else I’ve read about and am going to try is the use of h2 inhibitors. It’s super complicated sciencey stuff (that I don’t fully understand) to do with mast cells in the brain but drugs taken for acid reflux like famotidine are supposed to greatly lessen symptoms.

There just isn’t enough research happening for proper treatment to be found any time soon. Any effective treatments are mostly coming from people sharing their experiences anecdotally. You also have to really advocate for yourself and have done your research when speaking to doctors. I’ve been put on all sorts of birth control that research shows makes symptoms worse. Your doctor might be really good but if not, make sure you have an idea of what treatment you’d like to try before you speak to them.

I also find myself stupidly playing it down. It’s like I can’t communicate the full impact or give a true sense of how I’m literally having to talk myself out of suicide for days on end each month. So yeah, don’t do what I do!

Please do let me know how you get on and if you find something that works!

 

[flopsymopsy]

Hi, I have PMDD and it’s just the worst. It’s like a switch flicks in my head and I go from being ok to incredibly depressed and suicidal.

I’m still trying to work out what treatment is best for me but I can tell you that the birth control Eloine (called Yaz in the US and prescribed over there specifically for PMDD) has helped me a lot. It’s taken me from maybe 10 days a month of suicidal thoughts to 2/3. You’re supposed to be able to run packs back to back and avoid a period altogether but it didn’t work that way for me. I found I got PMDD symptoms and breakthrough bleeding until I took a break so I just have the 4 day break each month as intended.

Something else I’ve read about and am going to try is the use of h2 inhibitors. It’s super complicated sciencey stuff (that I don’t fully understand) to do with mast cells in the brain but drugs taken for acid reflux like famotidine are supposed to greatly lessen symptoms.

There just isn’t enough research happening for proper treatment to be found any time soon. Any effective treatments are mostly coming from people sharing their experiences anecdotally. You also have to really advocate for yourself and have done your research when speaking to doctors. I’ve been put on all sorts of birth control that research shows makes symptoms worse. Your doctor might be really good but if not, make sure you have an idea of what treatment you’d like to try before you speak to them.

I also find myself stupidly playing it down. It’s like I can’t communicate the full impact or give a true sense of how I’m literally having to talk myself out of suicide for days on end each month. So yeah, don’t do what I do!

Please do let me know how you get on and if you find something that works!

It’s just so awful isn’t it. It upsets me how little research is out there.
I struggle so much to explain it to others in my life, always ends up with them just thinking it’s just PMS and i can’t deal with it, when that’s so untrue. I hope there’s more treatments for us all in the future.

 

[Littlediamond28]

I have PMDD too. I've probably suffered with it since I was a teen but only started taking medication 14 years later, GP's fobbed it as as unlucky women's problems and bad PMS for years. It got really bad in the last year, it took me going to the GP in tears multiple times for them to even consider it. I'm on escitalopram along with a birth control pill now.

I know that feeling when you don't recognise yourself at all, you're pushing everyone else away too. You feel tormented inside your head, I snap at everyone and everything when I'm bad. Don't want to be around anyone, or so anything. I could easily just hide away in bed for days. The only thing that has actually helped is the escitalopram, since taking it I really do feel a lot better and I might only have 2/3 really bad days now.

You just have to be able to recognise what's happening, tell yourself that this is not you and it's just the hormonal effects and try to ride it all. Be kind to yourself and try to educate the people you're closest to so they can understand as well.

 

[flopsymopsy]

I have PMDD too. I've probably suffered with it since I was a teen but only started taking medication 14 years later, GP's fobbed it as as unlucky women's problems and bad PMS for years. It got really bad in the last year, it took me going to the GP in tears multiple times for them to even consider it. I'm on escitalopram along with a birth control pill now.

I know that feeling when you don't recognise yourself at all, you're pushing everyone else away too. You feel tormented inside your head, I snap at everyone and everything when I'm bad. Don't want to be around anyone, or so anything. I could easily just hide away in bed for days. The only thing that has actually helped is the escitalopram, since taking it I really do feel a lot better and I might only have 2/3 really bad days now.

You just have to be able to recognise what's happening, tell yourself that this is not you and it's just the hormonal effects and try to ride it all. Be kind to yourself and try to educate the people you're closest to so they can understand as well.

I think I just keep searching and hoping there’s something to stop it forever you know? I’m struggling to accept this will just be how it is for a long time

 

[Begborrowsteal]

I take citalopram anyway for BPD/depression, and I take Yasmin. When I was younger, it would be one week of suicidal thoughts and then one week of absolute rage. Now, in my 30s, it has changed - I now get real overwhelm, sensory overload and awful brain fog, to the point I struggle to string a sentence together. I spoke to my GP about it and got the typical response, that 'all women experience PMS'. Ok. Thanks, Doc.

 

[Meangirl815]

Hello

Fellow PMDD sufferer here.
I tried all and every treatment options available including hysterectomy and BSO

In my experience you have to work your way up the 'ladder of treatments' generally starts with birth control and/or SSRI's, into chemical menopause then on to surgical menopause.

Obviously it's a very individual process, lots of people find relief further down the ladder than others. I'm unlucky in the sense that the hysterectomy worked but i feel like i swapped PMDD for menopause which in itself is a witch AND i still struggle with balancing my hormones which occasionally gives me mild PMDD like symptoms

I'm 2yrs post operation and awaiting re referral back to my gynae for help with HRT. Finding and balancing hormones after surgery is as difficult as the PMDD life if I'm being completely honest.

Ultimately surgery is the last line of defence but i would be pushing your GP for a gynaecologist referral to get you started on the correct path.

The best of luck. I understand the battle

Re reading your original post and just wondering have you explored /considered PME opposed to PMDD?

 

[flopsymopsy]

Hello

Fellow PMDD sufferer here.
I tried all and every treatment options available including hysterectomy and BSO

In my experience you have to work your way up the 'ladder of treatments' generally starts with birth control and/or SSRI's, into chemical menopause then on to surgical menopause.

Obviously it's a very individual process, lots of people find relief further down the ladder than others. I'm unlucky in the sense that the hysterectomy worked but i feel like i swapped PMDD for menopause which in itself is a witch AND i still struggle with balancing my hormones which occasionally gives me mild PMDD like symptoms

I'm 2yrs post operation and awaiting re referral back to my gynae for help with HRT. Finding and balancing hormones after surgery is as difficult as the PMDD life if I'm being completely honest.

Ultimately surgery is the last line of defence but i would be pushing your GP for a gynaecologist referral to get you started on the correct path.

The best of luck. I understand the battle

Re reading your original post and just wondering have you explored /considered PME opposed to PMDD?

PME was originally considered but not ruled out. It’s only been a recent diagnosis. I might look into it a bit more, but it’s all so confusing. I know you have to be your own advocate but it can be tiring. It’s been super hard even figuring out which symptoms are what you know? And they give you no bloody advice or instructions manual it’s like “oh it’s PMDD” and then out the door with your prescriptions.
On a separate note, I hope your HRT referral comes through. It’s meant to be fab, my driving instructor never stopped raving about how great it was!

 

[Em511]

Hi ladies,

I hope you don't mind me asking this but did any of you suffer with any childhood trauma? Or a difficult childhood or any trauma at all really.
I only ask because I've been informed that PMDD is a trauma response and our bodies way of saying we have something beneath the surface that needs healing. I know that may seem daft but I'm trying to find some more information out. (I was diagnosed myself)

 

[Rosalind96]

Hi ladies,

I hope you don't mind me asking this but did any of you suffer with any childhood trauma? Or a difficult childhood or any trauma at all really.
I only ask because I've been informed that PMDD is a trauma response and our bodies way of saying we have something beneath the surface that needs healing. I know that may seem daft but I'm trying to find some more information out. (I was diagnosed myself)

I had a traumatic birth and then PND. I think that was a trigger for me. I’d imagine that some people’s brains are predisposed to PMDD and then trauma can flick the switch.

 

[Rodneytrotter]

Hi ladies,

I hope you don't mind me asking this but did any of you suffer with any childhood trauma? Or a difficult childhood or any trauma at all really.
I only ask because I've been informed that PMDD is a trauma response and our bodies way of saying we have something beneath the surface that needs healing. I know that may seem daft but I'm trying to find some more information out. (I was diagnosed myself)

Yes I did. So would the suggestion be that maybe the hormones trigger the ptsd?

 

[Begborrowsteal]

Id love to know more about the impact of hormones on mental health and the lasting damage of trauma. I was diagnosed with BPD at 20 (over 10yrs ago), and my 'PMS' has been awful since I was a teen, with depression since I was a small child. Ive had depression on and off all my life and suffered awful PND after my kids.

 

[Kaylarina]

I don't have much advice to offer but what I would say is push for a referral to a gynaecologist that has a special interest in PMDD. Although your general gynaecologist will be able to prescribe drugs etc, there are hospitals/clinics out there that would be a better fit.

 

[Meangirl815]

Hi ladies,

I hope you don't mind me asking this but did any of you suffer with any childhood trauma? Or a difficult childhood or any trauma at all really.
I only ask because I've been informed that PMDD is a trauma response and our bodies way of saying we have something beneath the surface that needs healing. I know that may seem daft but I'm trying to find some more information out. (I was diagnosed myself)

No. Not true.

In my experience.

PMDD is in reality an autoimmune response. Our bodies react to normal hormone fluctuations. It's a brain reaction to something which is normal.
It's like an intolerance to the fluctuations


I think PME is the correct diagnosis rather than PMDD if it is stemming from trauma

 

[flopsymopsy]

Hi ladies,

I hope you don't mind me asking this but did any of you suffer with any childhood trauma? Or a difficult childhood or any trauma at all really.
I only ask because I've been informed that PMDD is a trauma response and our bodies way of saying we have something beneath the surface that needs healing. I know that may seem daft but I'm trying to find some more information out. (I was diagnosed myself)

I was told it’s hormonal, and you’ve either got it or not. Can be hereditary apparently?
It’s such an under funded area that there’s not that much clarity online x

to answer, I had a turbulent childhood but wouldn’t say traumatic. I think this is just how my brain is unfortunately. Symptoms got worse the older I got, markedly so after an abusive relationship, but that would inevitably cause mental health issues so I don’t think it caused PMDD. I’m now in therapy trying to separate it all out and see if it’s PME, but it all takes time. Diving back into your trauma is hard!