Hi my name is Ashleigh, I’m 19 and I have
Endometriosis & Polycystic Ovaries.
My endometriosis journey first started properly when I was 14, although
I’d had problems a few years prior. My first Period was torture,
but it was my first period, so I just thought that’s what it’s going to be like.
I actually was told the day before I first started that if my pain got any
worse that I should go to A&E as it could’ve been meningitis, because I
also had a severe headache, a strange rash type thing and some other
symptoms, but then the day later I started bleeding and my mum
ongratulated me for becoming a woman!
Oh what hell that was going to be.
I spent years in and out of the doctors and
A&E. I had over 10 UTIs in a year, was on and
off antibiotics, which made me poorly in itself.
I was told it’s “all in my head”, that it’s just anxiety, that I’m making it up,
that it’s just IBS... I had a paediatrician who didn’t believe me, referred
me to a unit for people with “psychological” problems. Eventually I saw a
private gastroenterologist, who agreed to refer me back to the NHS to see
him for a endoscopy and colonoscopy - I was so happy because I thought
“someone’s finally listening” - how naive was I?
The scopes came back fine, so again - it was all in my head. I’d had all
these tests and they all came back fine so no one believed me. I
eventually got so poorly I was in and out of a&e and was loosing a
substantial amount of weight. My doctors put me onto
Cocodamol (30/500) and for the next two years I was taking between
6-10 a day. The pain ended up getting worse after a while, and I ended up completely lost, and I attempted to take my life due to how low I was from the pain. A week later my mum paid to see a private gynaecologist in Bournemouth.
He listened. He wanted to help.
I ended up having a laparoscopy with him & when he woke me up he told me I had Endometriosis - I couldn’t believe it. It was the day before my 17th Birthday and it actually felt like the best present I could receive, to know that my pain isn’t psychological and there’s things that could help me. I spent my 17th doped on morphine so that was interesting! After the laparoscopy I didn’t actually get any relief, I was then seen by the NHS gynaecology/endometriosis team at QA. I was put onto Zoladex which is a temporary menopause drug. It was HELL. I ended up in and out of A&E again, but this time for severe migraines. I was having hot flushes - I basically turned into a menopausal woman at 17.
In August 2019 I was told I also had PCOS (Polycystic Ovarian Syndrome). In the September/October of 2019 I was again back in severe pain, I was put onto morphine, I remained on that for around 6 months. In that time I had another Laparoscopy which they had to remove yet more endometriosis (only 11 months after my last one!). I came off of the morphine in May 2020 after reducing it slowly over about 6-8 weeks. I had ended up addicted to it, and it was so hard to stop. Since then I’ve not had any more surgeries as the last one (Jan 2020) that actually improved my quality of life! I’ve been off of opiates since May 2020 & am only on the progesterone only pill for my PCOS.
Endometriosis has ruined an awful lot of my teenage years. The years which are meant to be the best of my life; have actually been the worst. Whilst it’s been hell, it’s made me a stronger person, it’s made me more empathetic. I’ve met some incredible people through this journey. Just because an illness is invisible doesn’t mean it doesn’t exist! Painful periods are not normal. Fainting because of pain is not normal. Being sick because of pain is not normal. Being bed bound because of pain is not normal. If your period is impacting your life to the point you are unable to do your daily tasks, see a doctor. Beg for help. Don’t stop until you’ve been listened to. Nobody knows our bodies better than ourselves. My symptoms are pelvic pain, back pain, pain radiating down my thighs/legs, nausea, fatigue, longer periods, excessive bleeding, pain with bowel movements, pain with sex. Honestly the list goes on!
Speak to those around you, get as much support as possible.
My mum's been my biggest advocate throughout all this, if it wasn’t for her I wouldn’t of been diagnosed. I wouldn’t of got the help I so desperately needed. Thank you mum🤍x
Sending love to everybody & I’m always here if anyone needs me!x