Yasmin

I first started my periods at 9 years old. They we extremely heavy and debilitating from the start and I suffered throughout my teenage years. At the age of 16, despite years of being on contraception I was still experiencing symptoms that were beginning to affect my day to day life. 

Finally, at 21 years old I was diagnosed with deep moderate infiltrating endometriosis after battling since a young age. I have had an awful time navigating GPs and the NHS in general, especially switching between health boards , and found myself being met with constant dead ends, waiting lists of 12 months or more, referrals not completed properly and phone calls or queries not answered.

These past few years have consisted of multiple trips to A&E, where they never found anything wrong. Doctors consistently patronising me when results always came back ‘clear’. 

Although, I feel somewhat fortunate that I was able to get diagnosed within 6 years. It is still a very long time, but some women have been trying for decades.
I genuinely thought it was all in my head for so long. I have lost so much to my illness already.

Since my original scan in 2024 I have had a recent MRI in March 2026 that confirmed vast progression of the disease, including confirmation of severe Endometriosis, Adenomyosis in my uterine wall, a large endometrioma on my ovary, a retroverted uterus (reshaping of anatomy due to adhesions), bowel and bladder involvement. 

I am now waiting on further imaging to see the extent of the disease within my bowels before surgery.

Despite extensive disease found on imaging years ago I have consistently left appointments so upset and deflated with the lack of empathy, progress, and support from doctors.

I suffer from burnt skin all over my legs and stomach, use a walking stick regularly, and suffer daily from embarrassing symptoms that make it difficult to leave the house.

I feel so emotionally and physically drained.

I was, and still am, constantly labeled a ‘drama queen’ or told that it’s simply just my anxiety causing these symptoms and pain. It is not a mindset; it’s an incredibly debilitating physical condition.

I have had the hardest time trying to advocate for herself with the doctors and is still something she is currently working on.

I feels strongly about talking openly and candidly about the toileting and other symptoms that come with this disease that aren't always discussed. It’s so hard and embarrassing to talk about, but we are only human, and these things happen; we shouldn’t be made to feel insecure over something that can’t be helped.

You know your body best. I was told months before my initial MRI scan in 2024 that there was nothing there. My ultrasound came back clear. I have had years of doctors blaming my symptoms on IBS or possible STD's. The way we are treated is awful and it should not be this way. This disease is real. Your pain is real.

Just because you have a clear result does not mean it is not there. 

Keep fighting!