I first noticed symptoms of endometriosis when I had my first period. I noticed that all my friends didn’t seem to be in as much pain as I was and that their periods were much shorter than mine too. I also had extremely heavy bleeding and experienced pain using the toilet when I was on my period. I thought there was something seriously wrong with me.
I first sough medical attention when I was 14. I went on the pill to "help" my periods. This didn’t work for me however and led to me bleeding for 2 months straight. I went back to the doctor every few months or so until I was 23 years old.
For me, it took 10 years (from when my period started) to receiving a diagnosis.
My diagnosis journey was horrific, I underwent so many invasive procedures throughout my teens in an attempt to work out what was going on. They even did an operation to expand my urethra to see if this would help. I was constantly told it was normal and “every woman experiences it”. It was only when my Mum told doctors she would not leave the room until they helped me, that they really started to listen.
I begged to have an appointment with a female doctor and thank goodness it was her who did my appointment. She was the very first and only doctor to refer me.
When I was referred, they did an ultrasound and found nothing so I was referred for surgery. My diagnosis of endometriosis was confirmed through a laparoscopy/ excision surgery. Unfortunately my referral landed just as the pandemic hit so I had to wait about 2 years for surgery in the end due to back log.
I constantly had days off throughout high school and sixth form due to pain and fear of leaking etc. Due to the endo, some days I'm so exhausted and I genuinely feel bad for having to cancel on friends. It's easy for them to think I just can't be bothered, but actually I'm in agony. I get really bad brain fog as a result of the condition and I do believe this has led to a misconception that I'm "ditsy" or forgetful, but I’m not.
I'm so lucky to have the most supportive partner, but I know he sees how much pain I'm in and he doesn't know how to help. I have to plan days out, hobbies etc. around when my period will be due as I know I won’t be able to enjoy things for those 8 days of pain. I'm also scared to have children in case I have a girl and she goes through the same as me.
I first heard about Endometriosis UK through Instagram. The organisation came up on my explore page and I'm SO glad it did. I now feel "normal" and not like I’m struggling alone. I wanted to share my own experience to help others feel less alone too.
Thank you Mollie for sharing your story. 10 years for a diagnosis is far too long, but stories like Mollie's are all too common and highlight the urgent need for greater awareness and understanding of endometriosis and its symptoms.
For more information on diagnosis times in the UK and our proposed actions for reducing them, please read our report, Dismissed, ignored and belittled: The long road to endometriosis diagnosis in the UK
If you are struggling and need support, please find our support services here.
