Emily's Adenomyosis Story
By Emily Johnson
Hey, I'm Emily and I was recently diagnosed with adenomyosis and polycystic ovarian syndrome (PCOS). Once diagnosed I turned to social media to find out more about the conditions. This made me realise I am not alone, so here's my story to help you feel less alone too.
I had my first period when I was 13, I was soo excited to finally become an adult but this excitement didn't last long. On the build up I started to have immense pain in my hips which would often make me stop what I was doing and freeze. I then had really heavy periods getting though about 2-3 boxes of pads a period. I also passed a lot of blood clots 3cm or bigger. I went to the doctors on multiple occasions to discuss this and it was just dismissed as being normal. In 2017 I went on a school trip and I was soo worried that I would bleed on the bedding, that I went to the doctor and they gave me the pill to prevent it.
The pill was Microgynon and it worked for a bit but I still bled a lot. I also had super irregular periods and they would just come without any warning. Which as you can imagine was super frustrating. Anyway I just learnt to get on with it as I assumed it was normal. Sometimes dealing with it meant that I couldn't go to a friends house in case I bled there. I had this friend and I bled on his white carpet, I was soo embarrassed I didn't know what to do.
This year I started university, and around Christmas time I started to get this super intense urge to push. This push would often mean I would have to stop what I was doing whether that's shopping or cycling to push. The pushing would keep me up at night as I approached my period and would get more frequent during my cycle. I had other symptoms too I suffered headaches on a regular basis, I had lots of spotting, I wet myself (everyone was entertained by this) and I would have pain in my hips. This pain would cause me to squat. This soon got to the point where I was desperate for it to stop. So once again I went to my doctors and they took a urine sample and told me it was either cancer, normal or pregnancy. I was completely horrified at this that in tears I rang another doctor and made an appointment.
This doctor asked me a few questions and had a look and then dismissed it. Throughout February I bled more or less everyday, so went back to see her and she referred me to a gynaecologist. This was hard to fit in with COVID restrictions and so was cancelled a lot. May 13th I finally had an appointment. I had the usual tests and we spoke and that's when I finally got the diagnosis which answered all my questions, but also gave me more Was this normal? Can I still have children? Is it curable? These were some of the few I had. Adenomyosis.
The diagnosis itself was a relief but it made me go through a state where I felt really low. I woke up every day feeling bad with intense pain in my hips and questioning why did have to happen to me. I was put on a progesterone medication which has been giving me side effects. I'm losing a lot of my scalp hair (which is okay my hair is naturally thick) I'm having huge mood swings and I feel tired all the time and bleed a lot but it's still early days! More importantly I have no pushing sensation.
So that's my story as an 18 year old being diagnosed with adenomyosis, the only reason it was diagnosed was because of this pushing sensation I experienced! So my advice is please seek other medical advice if you’re not happy with a diagnosis. This illness needs to get so much more awareness, none of my friends know what it is but it effects so many - Endo affects 1 in 10, adeno is thought to affect almost as many, it just goes undiagnosed even more so than endo!
Just because you can't physically see the pain it does not mean it's not there. People who have this are so strong - it is mentally and physically exhausting to be living with adenomyosis. But you have got this! We can raise awareness together.
You are not alone.
You can follow Emily on Instagram at @_livingwithadenomyosis_
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