Did you know that in the UK, it take an average of 7 years plus for a woman to be diagnosed with Endometriosis? Do you know why there is such a long delay? The answer lies with some pretty simple reasons – lack of understanding, poor perception of womens periods and health, and the fact that diagnosis can only be made through surgery.
I have spoke to and met lots of women who fought and fought for their diagnosis, have suffered for many years and known exactly what they were trying to be diagnosed with. Women who just knew that their body was fighting against Endometriosis, but it was a case of getting others to believe it too.
But I don’t fit into that category.
You might have read in my earlier posts (this one is pretty informative) that I was diagnosed with Endometriosis, Interstitial Cystitis, M.E./CFS, Adenomyosis and PCOS within a very short time of one another. It was definitely a case of “all things come at once” and the last few years have been an incredible roller coaster, but there was also a simple element of luck within my story.
What do I mean by luck? Well, I mean that if I hadn’t seen a particular consultant, hadn’t gone through a variety of hormonal medication that I then refused to have any more of, and hadn’t been so adamant with what my symptoms were and when they occurred, I would not be where I am now and definitely would not have any diagnosis’.
When I was 21-years-old, I paid to see a urogynaecology consultant (who had been recommended to me by a family friend) due to my worrying bladder symptoms and frequent urine infections. Before this, I had been to my GP so many times but had gotten nowhere, and I can remember holding an A4 piece of paper full of all my symptoms, investigations and tests to date. Almost immediately, I started new medication and embarked on endless weeks of invasive treatment. My main problems at the time were repeated urine infections (it was so repetitive they became weekly), bowel problems and heavy and agonizingly painful periods.
My urinary symptoms improved for a while, and I was still ongoing with other tests such as colonoscopies, but when things plateaued things got real. Within a course of a few months I’d tried a handful of contraceptives that were doing nothing but giving me side effects, my bowels remained unchanged and I was loosing weight fast, and I starting getting infections again. When another hormone treatment was suggested I refused, so my urogynaecologist agreed to trial me for a short period without.
And it was the best thing that I could have done.
What it highlighted was how in sync my symptoms were with my menstrual cycle and how bad my periods really were. I remember lying on the couch in the consultation room after another round of invasive bladder treatment when my consultant advise my mum and I that the next step would be surgery, because she needed to exclude Endometriosis. I can even recall my mum and I looking at each other and shaking our heads – we didn’t think I had Endometriosis, but we couldn’t have been more wrong.
Just a few weeks later I was out of surgery with a diagnosis; “it is Endometriosis” my consultant told me. She’d removed as much of it as she could, but it was now time to go back onto contraception to stop it from returning.
Throughout the build up to my first diagnosis, I never once considered that I would have Endometriosis. I didn’t really know much about it at the time, but I never knew it was a possibility – yes my periods were an absolute nightmare, but I was told that was “normal” over and over again. I’d visited my GP so many times about it, even leading up to my first operation, but was “reassured” about it being fine. But if I’d realised and not listened to them, maybe I could have been diagnosed sooner.
The unfortunate thing was, as well as being so unaware of what Endometriosis was, my consultant didn’t fill me in much either. I was so poorly after my operation, wasn’t allowed to stay in (I was at a private hospital that did NHS treatment, and they did not have an “overnight” ward – it was either home or transport and I think we all know which was one was better and cheaper for them…), and sent home without knowing the seriousness of my diagnosis. This meant I thought I was “cured” and couldn’t understand why my pain and symptoms returned only a few weeks post-op.
At my follow up, I was advised that the next step was to have my ovary removed (I never knew which one, but now I think she meant my problematic left one) and that we had to hurry up and have children before I was 25-years-old. My husband (then boyfriend) and I were in place to have a baby – we had just given up our rented home, just changed jobs and I was still sick. But that was that. I was left to think over the options and had no other follow-up booked.
But my luck didn’t end there.
Within a few weeks of moving, I was sent to the emergency gynaecology clinic by my new GP because my pain was uncontrollable and I was taking lots of time off work. The clinic is normally ran by fresh-out-of-university junior doctors, but I ended up seeing the clinic lead who just so happened to be the lead Endometriosis consultant for the county. He gave me and my husband more information than my previous consultant ever did – for the first time we felt like we had a handle of my situation.
I’d say even though I’ve undergone another 2 operations for my Endometriosis and an emergency one, my luck is continuing with my current consultant. It was by chance I decided to go to see her (and if you’re wondering why I changed consultants again, it was because my second one is now in Africa and the third one actually was not great) and it was another decision I’m pleased I made. She is helping me in more ways that I can describe and during my recent emergency admission and operation, she was co-coordinating it all whilst on leave. Without her, my husband and I would not have the opportunities and care we’ve received.
When I sit back and think about it all, I think that even though my journey is not the stereotypical Endometriosis one, it’s one to tell others. Sometimes going with your gut instinct and the path life takes you on can be a good one. And whilst I 100% think if I had known more about Endometriosis I would have gotten a diagnosis quicker, I don’t think I’d have had the number of surgeries I’ve had, the treatment I’ve had and the other diagnosis’ along the way. Why is other diagnosis’ a good thing? Because again they were picked up by chance – PCOS was identified after a conversation about the state of my skin and Adenomyosis was picked up because the surgeon decided to do a long operation and be extra thorough.
So, no, I don’t fit into the Endometriosis UK statistics, but it doesn’t mean that my journey has been and is any less of a struggle.