I first started experiencing symptoms when I was 15 years old. My GP at the time sent me for an MRI which came back with a cyst on my left ovary, and I was told it wouldn’t be bother me or cause any issues. Then my pain started to worsen, I went back to my GP with continuous pain, being told by one GP I had to do exercises for backache, physio for restless legs etc, at this point I was taking strong painkillers. I finally put my foot down and thought at the time this is not okay for a 17 year old to be in this much pain.
My previous GP retired so I was given a new, male GP. I didn’t have high hopes because I had been brushed off, but how wrong was I. He sent me for scans, ultrasounds, internal ultrasounds and test after test, and the one thing that will always stick with me is that he said ‘I will never truly understand your pain, so all I can ever do is help you’ and that’s all he has ever done.
I had my first laparoscopy in July 2022, but was told I was ‘perfectly healthy and no issues at all’. Obviously disheartened, I went back to my GP who then referred me last year to a specialist where I had the same surgery almost exactly a year later, I was told I had endometriosis all over my right and left abdominal wall, in between my uterus & bladder, on my sacral ligament and fallopian tube, and that my uterus ‘looks adenomyotic’ (see adenomyosis).
It was a relief to know it wasn’t all in my head but it has terrified me at what my future is going to be. I’ve had some good experiences with medical practitioners and some bad, some who have told me it’s all in my head and have been extremely rude and some who are extremely kind, caring and supportive.
Endometriosis has impacted me in so many ways of my life to be honest. Going without a diagnosis for 10+ years, I have genuinely struggled mentally, I’ve been gaslighting myself for this long into believing it wasn’t real, that it’s all in my head, even now I have the diagnosis I still do the same thing. I have to take each day as it comes, and I don’t plan too much when I’m off work because my flare ups are so irregular that they’re out of my control.
I used to work full time as a hairdresser but I only work part time now as I struggle so much to be on my feet for a long period of time. Luckily I’ve got understanding friends but sometimes it is hard to be explaining all the time why I have to go slow, why I can’t do a lot of walking etc. Of course fertility is such a big worry for myself too, and more so that I’m not getting any younger either.
I heard about Endometriosis UK before I was diagnosed, when I set up my own endo insta, I then felt I wanted to raise money for something that is extremely close to my heart.
Thank you Rebecca for sharing your story.
More than 10 years for a diagnosis is much too long. Join us in taking action and calling for much needed change this Endometriosis Action Month. Find information on how you can get involved here.
