PMDD Diaries: Prostap Injections Month 1
Time for an update on my PMDD (premenstrual dysphoric disorder) treatment journey. If you’re new here or not up to speed, please read my previous posts:
Last time I wrote about this I left off on a fairly promising note: I finally had a follow up with the gynaecology clinic and, after some umm-ing and ah-ing, decided to go ahead with trying GnRH analogues and add back HRT to treat my Premenstrual Dysphoric Disorder.
I had my first Prostap (leuprorelin acetate) injection on the 21st September 2022.
Annoyingly, due to some NHS communication errors, my appointment fell on the 10th day of my cycle whereas I had been advised/told it would be done during my period. I was already incredibly anxious and this admin blip generated an extra layer of unpleasant emotions as I was already still slightly reluctant to go through with the treatment. No one was really able to give any insight or advice as to what I was about to go through physically.
The most I got out of anyone (including Dr. Google) is that I was about to embark on a tough couple of months. Could it really be anymore difficult to what I’d already been living with though?
We then hit another admin blip as I had not already been given a prescription for the HRT (Tibolone) that had been strongly recommended in my appointment my consultant’s team the month before. It was quite late in the day and staff were going home. It was a nerve-wracking few minutes while nurse had to scramble around to find a doctor to sign off on the prescription. If she hadn’t I would not have gone through with the injection that day as the doctor I discussed the treatment with before had said it would be “cruel” to start the injections without the HRT because of the menopausal symptoms (night sweats, hot flushes, vaginal dryness etc).
Once that was sorted, the actual procedure was extremely straight forward. After I had given verbal consent, the nurse administered the injection into the top of my right buttock. I don’t process pain the same way as most people so I can’t say if it actually hurt; I could tell the liquid was thicker than other injections I’d had before, but it was over in seconds.
The first week
The day after my injection I went to stay with my Mum on her boat by the sea and then visited my Dad on the way home, just as a distraction.
I noticed physical changes as early as day 3 which I suspected were more HRT than injection related. These symptoms or side-effects were breast pain and swelling; joint pain (especially in my hands) which was annoying as that was one of my more frustrating premenstrual symptoms; fatigue and a lot of ovulation-style vaginal discharge. I found my mood was generally stable but low with moderate anxiety.
By day 9 I noticed a more dramatic and positive change; I suddenly had a lot more energy and a much higher sex drive which had largely been AWOL. This was particularly interesting as, if this were a ‘normal’ cycle, I would be on day 19 where I would feel the exact opposite (my PMDD symptoms would usually hit around day 17).
I then got a cold which took the wind out of my sails a bit. My partner went to visit their family abroad which is the kind of thing that would sometimes be quite difficult for me to cope with, but I was genuinely fine.
Day 14 post-injection saw… blood. Enough to soak through my clothes in the night which wasn’t the usual for me. It also caught me off-guard as it arrived 10 days earlier than my predicted ‘normal’ period, but it was gone as quickly as it arrived, and I was back to normal in a couple of days. I didn’t notice any major mood differences or mood swings either which was nice!
Unfortunately around day 16 post-injection I had quite a big ‘falling out’ with my partner – probably the worst of our 13 year relationship. This was nothing to do with me but it was particularly horrible timing and understandably skewed my data in regards to how/if my moods were changing.
More side effects
Physically, I felt pretty naff. I had all over flu-like aches and pains in both my muscles and joints (a common symptom of my PMDD), regular headaches, and very sore and rapidly expanding boobs. I also had an aggressive bout of thrush which could have been a side effect of either the injection or new HRT (vaginal irritation is a side effect listed in the patient’s leaflet) or just stress triggered, given the relationship difficulties and anxiety I had been feeling around the treatment in general.
I did find I was overall functioning fairly well. I was able to make several trips to Alton Towers (I will have to write about my thing for theme parks here at some point!) and was able to manage my constant, nagging pain levels fairly well.
There was a marked positive difference between how I felt during my first month of treatment and how I had been scraping by while fully symptomatic before. It wasn’t perfect, but I was optimistic.
The Big Sad returns
My Prostap injections are supposed to be administered every 28 days, however my next appointment was arranged a few days late because of staffing issues. I naively had faith in the service that they knew what they were doing this wouldn’t be a big deal, so didn’t expect the severe depressive mood swing that hit me on day 30. My PMDD symptoms were extremely time sensitive and it would appear my symptoms return when the injection “runs out”.
My second injection was on what would be day 31 (while tracking my treatment, each injection will reset my count back to day 1) and I was Not Okay.
My partner attended the appointment with me and we mentioned how we suspected my mood was injection related and they “promised” future injections would be on time…