Why it took me 15 years to get a diagnosis of endometriosis
Yesterday I completed my #walkforendo challenge for Endometriosis UK, which aims to raise awareness of (and funding to change) the fact it takes an average of 7.5 years to get an endometriosis diagnosis. I thought I'd mark the occasion by telling you my diagnosis story.
My mam had given me 'the talk' some time before, and we had a lesson in school where we were told about what a period is and received a few sample sanitary products. I don't ever remember anyone telling me what a normal period should be like, or that it shouldn't be so heavy and painful. I do remember one of my friends exclaiming at me 'taking so long' in the girls' toilets during a particularly heavy period, and that other girls didn't seem phased by theirs.
It wasn't long before my mam took me to the doctors, realising something wasn't quite right. The doctor simply said it was normal, some women just get bad periods and I was one of the unlucky ones. I'll say. At the ripe age of 13 years old I was sent away with the contraceptive pill. It made me nauseous, so I tried another. It was tolerable.
For years the contraceptive pill 'improved' my periods - masking the symptoms of endometriosis whilst the disease grew quietly in the background.
Throughout my late teens and early twenties I suffered on and off with regular bouts of cystitis. I was a bit of a partier and, honestly, a binge drinker - so I put it down to that. I drank cranberry juice by the gallon.
By age 25, I was engaged to and living with my now husband, trying to get pregnant. As soon as I came off the contraceptive pill I started experiencing unpleasant symptoms. Very irregular periods, painful periods, terrible acne and bloating to name a few. This, combined with not being pregnant after a year of trying, led me to make an appointment with my GP.
They investigated me for Polycystic Ovary Syndrome, but right before my consultant appointment I fell pregnant! I still went to the appointment, but was told that since I was now pregnant there would be no further investigations. Case closed. That felt a little frustrating, but I always had the feeling that PCOS wasn't my problem, so I got over it.
Fast forward to 28, a few months after our wedding and just after our son turned 2, we decided to try for another baby.
About a month later the pain started. It didn't start in my pelvis, which is why it took a little while to figure out that it was related to coming off contraception. It started in my diaphragm and radiated through to my shoulder. The doctor suspected a muscular injury and told me to rest.
The pain continued, and started to spread. I went back to the GP about seven times, and even A&E twice with severe pain. I had ultrasounds, blood tests, internal exams. Theories included a 'grumbling appendix', pancreatitis, kidney stones and a musculoskeletal problem.
It was only when I finally realised that my periods were worse, and it had all started after I came off the pill, that the GP finally referred me to gynaecology. Even then, I had to fight for answers.
Eventually, six months after the pain began, I had my laparoscopy and they diagnosed me with endometriosis. It was bittersweet. It took 15 years to get to that point, and I finally had answers. It wasn't all in my head. But now I faced a lifelong, incurable illness. An invisible illness, that wasn't well understood or researched.
Awareness of endometriosis has increased in recent years, and I'm hopeful that this will lead to better treatment, research and support. If you want to help, you can still donate to my #walkforendo, or help me raise awareness by sharing my story.
Thank you to all who have donated so far.
Sam x
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