My journey to a diagnosis. (Part one)
This is my first attempt at writing pretty much anything before, that wasn’t for school or college. It’s taken me a while to find the courage to firstly document my illness and then to publish it on the internet. If you’re reading this (I mean seriously IF), you or a loved one may have endometriosis. If that’s the case I’d love to hear form you. I’ve started this blog to act as a diary if you like but also to (maybe) meet others in the community.
My symptoms began when I was 20 years old. Chronic UTIs and pain during sex were the first things I noticed. A typical 20 year old, I ignored anything out of the ordinary for as long as possible. It wasn’t until I finally confided in my mum that she encouraged me (marched me more like) to visit my GP.
What followed was a long chapter of my life which involved countless GPs, consultants and procedures. The amount of time I had spent convincing myself there was nothing wrong, was now replaced with me convincing doctors and nurses there was. My symptoms developed, first into severe period pain, then chronic pelvic pain throughout my cycle.
I was advised to start the combined oral contraceptive pill, taking this non stop throughout the month, stopping my periods. The idea behind this is if you prevent your body from menstruating you will no longer experience heavy and/or painful periods which is common with this disease. The problem with this is that symptoms expand far wider than painful periods. I still experienced pelvic pain throughout my cycle and my array of other symptoms continued to boot.
After trying what had been suggested for 6 months and finding no relief I returned to the gynaecology department expecting to be offered an alternative treatment. The doctor looked at my period diary I had completed over the past 6 months, charting my pain and menstrual bleeding and noted she saw a “marked improvement.” On clarification she explained she didn’t think we ought to do anything more, given that I was not longer having periods.
This was the first moment I encountered something I would come to know very well. Normalising pain! This doctor didn’t see my chronic pain as a problem to treat. After some probing she admitted a diagnostic laparoscopy may shed light on what was causing my pain. This is also when I first heard the term endometriosis. I was initially relieved to finally (possibly) have a known cause for my symptoms. Until I went home and googled endometriosis. (I know, I know what a way to terrify myself). It was at this point I realised if this was the cause then it wasn’t a case of receiving treatment and getting better, but managing a chronic condition that could potentially stick around for a long time.
So after some convincing (on my part), I was scheduled to have a laparoscopy later the following year (NHS waiting times an all). Coming round from my surgery I was greeted by the surgeon informing me that nothing was found and I was fine. He advised me that if I had a problem with heavy periods to try the mirena coil. I was heartbroken. It sounds absurd but to be told nothing was found, to me felt like being told my pain and other symptoms had been, at best exaggerated and at worst fabricated by myself.
I’d love to say at this point I trialled what was suggested, discussed other options or sought a second opinion. I did none of those things. I was 22, my symptoms although they certainly effected me, didn’t (at this point) prevent me living my life. I worked full-time, studied and maintained some kind of social life. So I did what I do best. I did nothing, and carried on as if nothing had changed. I continued to suffer with painful periods and continued to miss time from work, college and some of my friendships were sacrificed in the process.
This feels like an appropriate place to stop. I’m conscious this is getting a little long. As those with Endo will be aware, this often takes a while.