PMDD Diaries: 1 Year Update
It’s been a year since my formal diagnosis of Premenstrual Dysphoric Disorder. There have been set backs and advancements so it’s about time I wrote an update.
Truth be told, over the last 6 months my symptoms have been so severe to the point of being unmanageable (which is partly the reason for the lack of recent content on the blog). PMDD has eaten away at pretty much every aspect of my life and, to be frank, if I’d have had the energy when my symptoms hit every month, I would probably not be here.
It has interfered with my social life and relationship having to plan activities around around certain dates in the calendar. My trip to this year’s BiCon in Leeds (that I had planned to blog about) might as well have not happened as I spent most of the time fast asleep at our Airbnb. I have had to cancel or just walk out of other social or kink events as my anxiety and paranoia made it impossible to speak at times.
Medication changes
In an effort to find any relief while biding my time for my follow up appointment at the gynaecology clinic, my mental health team felt it necessary to adjust my medications.
Most notably, my Fluoxetine dose was increased from 40mg to 60mg (the maximum dose) to be taken cyclically (starting 12 or so days before my period then stopping once I began bleeding). This was done under the care of my psychiatrist as going nothing-60mg-nothing again is… pretty wild. Surprisingly I experienced no ill effects from this, but no major benefits either.
I was prescribed Promazine, which I found beneficial in the past, as an additional PRN medication for anxiety so that my Diazepam dosage was saved for my worst episodes.
I also increased my vitamin B6 supplement, recommended by my gynaecologist, from 50mg to 100mg a day.
The follow up appointment… finally
During my first appointment with a gynaecologist in September 2021, it was agreed that I would have follow up appointments with them every three months.
The first of those follow ups ended up taking place in August 2022, so almost a year later.
While I am a bit salty that this took so long, it did leave me with a lot of time to consider the more radical treatment options available as these were all I really had left.
One of these options discussed in my appointment in September was GnRH agonist injections, with add back HRT to protect my bones and help prevent “menopausal” symptoms I would likely experience as a result of the injections, such as hot flushes, night sweats and vaginal dryness. Before my next appointment and following numerous conversations with my partner, family and mental health team, I had pretty much resigned myself to having to give it a shot.
Given how long I had waited for that appointment, I took my damn time asking a lot of questions! My mum came along as support to make sure I didn’t forget anything and the doctor I saw was extremely open and happy to listen to all my concerns. She pretty much confirmed that this treatment was all I really have left but generally painted a very positive picture of it; that in individuals with PMDD/PMS have a very high success rate and that this is something to be optimistic about. If it doesn’t work, the “menopausal effects” of the treatment are apparently fully reversible, which I didn’t know before.
What’s next?
A date was arranged for me to start the injections called Prostap (which would have to be done every 28 days) in September. These will take place in a nurse-led clinic in the hospital, and they will be responsible in dispensing the medication that will be used as HRT, which I believe will be Tibolone.
I am still very, very intimidated by this whole thing. “Menopause” is a scary word for a lot of women, and it just feels weird and isolating to experience this at the age of 30.
However, if it means I get my life back, bring on those hot flushes!
Continued:
More posts about my PMDD journey:
Resources:
- The International Association for Premenstrual Disorders https://iapmd.org/
- National Association for Premenstrual Syndromes https://www.pms.org.uk/
- Mind page on PMDD
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