Have you had a diagnosis of endometriosis yet? If yes, then you probably know how difficult it can be to get one. There are exceptions to this of course, but on average it takes seven and a half years to get a diagnosis.
There’s only really one myth when it comes to diagnosis, and that is that you don’t need to have surgery to be diagnosed with endometriosis. This is not true unfortunately. However, if a doctor suspects endometriosis, they may offer you (as my doctor did) treatment for endo and the pain, without getting a confirmed diagnosis. But to confirm a diagnosis of endometriosis, this can only be accurately done through surgery. There are cases where endometriosis can be seen on an MRI scan, but this is only in rare and usually advanced cases where there is enough endometrium to show up on the scan. So although an MRI scan can, on occasion, be used to confirm the presence of endo, the only way to accurately rule endo out is through surgery.
My diagnosis period was fairly long, not seven and a half years long, but not far off it. I first mentioned endometriosis by name to a doctor in January 2015, when I was in A&E because the pain in my hip had become so unbearable and I could hardly move. I described my symptoms, and said that I thought that endometriosis was a possibility because it seemed to explain everything that I had been experiencing. I was told that there was no way that I had it, and not to google my symptoms. As a 20 year old girl, I felt very stupid for suggesting endo and I believe that this prevented me from effectively advocating for myself when I felt I wasn’t being listened to by medical professionals. Before this, I had spent the previous 2-3 years telling doctors about the symptoms I was experiencing. Not one of my doctors looked at my symptoms as a whole, but tried to resolve each one independently.
One doctor, who thought I was just doing it for the painkillers, accused me of faking the pain. This was a big knock back for me, but fortunately I stood up for myself during this appointment and told the doctor that I wouldn’t need the painkillers if they could figure out what was wrong with me. (Safe to say that I never returned to that GP!)
The first time a doctor mentioned endo to me was in 2017 (5 years after starting to try and find out what was wrong), when I was in so much pain that I left work and went to a walk in centre. After letting me talk through my symptoms, bot the doctor and nurse (who I saw separately) said they thought I had endometriosis and talked me through it. As the doctor was not my registered GP, he was unable to refer me to a gynaecologist. Instead he wrote a letter to my GP explaining my preliminary diagnosis and that I needed a referral. But, when I went to that GP appointment she completely dismissed it and refused to refer me to a gynaecologist.
I was sent for so many tests, scans and examinations, and just by luck my GP was on holiday when my results came back, so I was booked in with a different one. This second GP agreed with the doctor from the walk in centre and referred me to a gynaecologist, over two months after the first GP had denied this.
From this referral I was told that they thought I did have endometriosis, and that I had two options in regards to treatment. I could either let them treat the assumed endo and see if that helped with my pain and symptoms. Or, I could have the surgery to get a confirmation that it actually was endo and then we would work out a treatment plan from there. I went with the second option, as I wanted to have all the information I could have to be able to work out what was wrong with me and how to help with it.
I waited 9 months to have my laparoscopy, and on 7th August 2018 I was given the confirmation of my diagnosis – stage 4 endometriosis and adenomyosis. I had to get the doctor to confirm this to me a few times because I was so out of it from the anaesthetic that I couldn’t’ work out if they were saying I did have it or I didn’t! Once it sunk it, there were a lot of tears. I think it was a combination of the relief of finally knowing what was wrong with me, the assurance that I had been right and I knew my body better than the majority of my doctors and the sadness because reading up on endo isn’t the most pleasant of topics, and I was aware that it is something that currently has no cure and can have a big impact on fertility.
My surgery was supposed to be 20-30 minutes, but it ended up lasting almost 3 hours because of the amount of scar tissue they found and had to remove. I was absolutely wiped out after this, and ended up needing to stay the night in hospital for observation, but I was able to go home the next day.
The one thing to take from my diagnosis story is to keep being an advocate for yourself – because you do know your body better than everyone else. You know when something is wrong, and unfortunately you will need to fight to prove this on occasion. Don’t let people tell you there is nothing wrong when you know there is. Ask for the second, third and fourth opinions. Do your research and make your case. When seeking your diagnosis, be prepared to fight for yourself and make yourself heard.