Alisha’s Story

I’ve had endo symptoms since I started my periods at age 10, my mum took me to the drs and they told her it was normal and put me on tranexamic acid, we kept going and kept being told it was normal or just puberty.

I continued to go on my own and push further in my teens, but guess what, kept being told the same thing!

At almost 15 I went onto the pill and was told I couldn’t take tranexamic acid whilst on it. I was still suffering so they put me on it continuously but nothing helped. They kept refusing to do more.

Eventually at 19 I broke down completely Infront of the Dr so she referred me to physio. Physio thought I had hip impingement and ordered an x-ray which showed a large dermoid cyst so I had that removed at 20 but that didn’t solve my problems so yet again I continued pushing and was getting nowhere still.

I moved areas shortly after this and then got dismissed at new drs saying it’s probably just my bowel. Eventually through more pushing I finally found a Dr that listened and understood. He referred me to gynae.

1st gynae was dismissive saying it would have been found in my lap for the cyst if I had it and said “you don’t have endometriosis, you don’t want it, why do you want it” this broke me. Maybe it was just in my head and nothing was wrong.

But I continued pushing got a 2nd opinion because my Dr wrote them a strongly worded letter. And that gynae listened and understood.

I had my lap in September 2024 and got diagnosed with stage 4 endo and then referred to endo specialists, in march I had an MRI which also confirmed I have 22X40mm Adenomyosis, a distended bladder, that my rectum and cervix are adhered to each other by endo, I have multiple nabothian cysts in my cervix and multiple immature follicles on my right ovary and confirmed the size of my endometrioma.

In August I was advised they will be discussing me at MDT next month and then I should hopefully have a follow up and get put on the excision waiting list and they also advised they highly suspect infiltration into my bowel as all my gastro testing has come back normal despite the blood in my stools being enough to warrant a bowel cancer referral, which was a super scary time!

And to top it all off, I was diagnosed with PoTS in February too after 10 years of pushing for answers on that!