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Blog 07. Life with PMDD and fibromyalgia (Jennifer's story)

Updated: Mar 18, 2022

by Jennifer


"I just wanted to share my story if it helps."


I believe I’ve had premenstrual dysphoric disorder (PMDD) since my periods began age 13. My relationship with my parents was not good and hated myself enough to push everyone away.

Age 18 I rang the doctor as I was so mentally unwell. I thought maybe I had bipolar. The male doctor said depression.

Aged 30 I think I properly acknowledged I have PMDD. I couldn’t take any birth control as I had a severe reaction to each, like throbbing pain all over. Mirena coil for 6 months severe throbbing pain. I then went on prostap injections to induce a chemical menopause (this was initially horrendous with sweats etc). I felt much better once the prostap settled. However, six months into treatment I fell seriously ill, like my whole body being attacked (my body shut down completely). I came off prostap, went back to gynaecologist and he couldn’t explain. He was not helpful at all.


I am now waiting on the list for laparoscopy (3 years already) to investigate endometriosis before considering a full hysterectomy. I now have fibromyalgia as a result of the injections.


I am now 33yrs old and I have just finished my science degree with a 2.1. I achieved this with PMDD, entering and coming out of a chemical menopause and getting fibromyalgia during the second year of university. I can honestly say the last four years have been the worst and I wanted to give up everyday. My advice to anyone with PMDD trying to study would be to contact student services. I applied for disabled students allowance with a letter from my GP saying I had PMDD. The allowance was not of monetary value but they gave me a laptop and various software. I could also have extra time on assignments and exams (which I didn’t use) but to know it was there really helped me. I think without this help I would have given up. I’m glad I asked for help. I also used the counseling service at uni which was brilliant and I could have had a mental health mentor if needed to meet up and help me. We shouldn’t feel ashamed in asking for the help with PMDD.


I want to also say my daughter, who is turning 13yrs old, is also showing signs of PMDD. Extreme moods and exactly how I was at that age. She is waiting to be seen by the mental health team. I am thinking there could be a genetic link to this. She has had her period a year now.

I will make sure she doesn’t wait 17 years to be taken seriously and I will be equipped with knowledge to not let doctors gaslight me.

I get one good week a month. I feel unwell and pain at ovulation. I am unwell a week before my period and I am bedridden for 5-7 days on my period. I also have uncontrolled fibromyalgia which flares severely a week before my period. I am using light weights and walking and watching what I eat.


Thanks for listening.


 

This blog site is hosted by Dr Lynsay Matthews, Research Fellow and PMDD researcher at the University of Birmingham.


If you'd like to share your story, drop Lynsay an email at drlynsaymatthews@gmail.com


If you'd like to hear about or be involved in Lynsay's research see her research page


 

LOOKING FOR MORE INFO ON PMDD?

A reminder that you'll find up to date information and support for PMDD at www.iapmd.org For info on raising awareness visit www.viciouscyclepmdd.com

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