I did this as a Twitter thread originally, but decided to stick it all together in a blog too. It’s still in Twitter format though – makes it easy to read, imo.
In November 2019, my periods very suddenly, and without warning, decided to become *very* painful and to last around 2 weks. From having been quite ok (post children), no pain, normally a surprise that period started, lasted less than a week, and fairly light.
So to then be having to steel myself to simply get up to go for a wee, because the pain was that bad, was something of a shock. I have a high pain threshold, so it makes it more shocking (for me). The first 2-3 days were awful.
I thought maybe it was a one off, but no. December was the same. So in January, I started keeping track. I went to my GP in March 2020, and was referred for a scan and CA125 blood test. I had the scan about 10 days or so before lockdown.
I’ve looked back on the notes on the period tracking app I used. I mention sharp stabbing pain on the right. Bloating. Feeling constipated, but not being constipated. I did try to tell the GP about the notes. In fairness, she did refer me straight off for the ultrasound, etc.
My ultrasound was normal. My CA125 was normal. As for my mad periods “sometimes they just go haywire for no apparent reason”. I was put on the mini pill for a couple of months. I had another blood test, this time for hormone levels. All normal.
According to the app, I started on the mini pill in mid April. Glad I found those notes, because I couldn’t remember. I also got ill in April, but not with covid symptoms. I had really bad pain on the right hand side, but no appendicitis symptoms (thankfully).
I spoke to a GP on the 3rd day. I was on Day 17 of the Never Ending Period. The pain in my tummy was blamed on my period (no). The pain in my back was blamed on me having been in bed for 2 days (no), and I was given ibuprofen gel and back exercises.
I decided to stop taking the pill after those 2 months, to see if it had kicked my body into behaving. It hadn’t, and I went back on it in September. In the meantime, I’d been feeling “not right” since I’d been ill in April, and in June contacted my GP about still not feeling well.
I got sent for bloods, and I was anaemic. I’d also lost weight and my appetite was shit. This was all a knock on effect of whatever had made me ill in April. I still had that pain on the right hand side. It was just kind of *there*.
I got referred for the iron deficieny anaemia, and from there for endoscopy. Which was delayed by 5 months, because my symptoms didn’t suggest urgency and, you know, covid. I finally had them (gastro and colon) on 22nd December.
A raised area in the sigmoid saw me refered for a CT scan to check there wasn’t a gynaecological reason for this. I had the CT scan on 9th January, and a phone call regarding the result on 14th January. I have an “abnormal ovary”.
I got 2 letters on 21st January (dated 14th January), one with the result of the CT, and the other a copy of the urgent referral to gynae. My abnormal ovary is the right one. I’ve also had another CA125 blood test (on 19th January). From the endoscopy onwards, its all been “urgent”.
This is what the CT scan showed. Slightly offended by “grossly unremarkable”, not going to lie.
So now I’m just waiting for that gynae referral (which is urgent, so should be within 2 weeks of the ref). I cannot help but think that I shouldn’t have been like this for so long, and it’s only my illness in April that’s actually triggered all the scans and investigations.
I suspect that it’s been cysts all along, but now it’s a question whether those cysts are benign or malignant. I think that cysts are what caused the painful and long periods. And obviously its connected to that pain in my right side.
The pain in my right side has never gone away completely. It is always just there, and it does affect my life. Not massively, maybe, but it’s still there, and I think it stops me being more active. The thought of doing anything more than walking with this pain makes me wince.
We accept far too readily that it’s “just one of those things”, and “sometimes they just go haywire for no reason at all”. I think mine did have a reason, and it’s only now, 9/10 months down the line, that I’m getting to the bottom of it. It’s not right, is it?