Endometriosis- A little history and finally getting a diagnosis

I was 11 years old when I started my period and I thought it was awful and embarrassing. I didn’t tell my mum as discussing those things just felt so embarrassing for me. I knew where my mum kept her pads so just started using them, obviously it wasn’t long before my mum realised she wasn’t thing only one using them. She tried to have a conversation with me about it, but I just cringed. So, we agreed if I had any questions I would ask her, and she would buy me my own sanitary things.

Over the next few years I was in agony in the run-up and during my menstrual cycle. My flow was heavy and unpredictable, I was never regular. I remember being sat in social education, I could only have been 13 years old and my guidance teacher was teaching us about women’s periods. She said not to worry that all those horror stories you’d hear about randomly starting to bleed when you’re out and about were not true. This must be one of the only times I was open about mine. I immediately put my hand up and told her that wasn’t true as that’s how mine always started. The pain was crippling and nauseating, which left me feeling drained and fatigued.

I was 14/15 when my mum took me to the doctors after watching me take numerous sick days over the years. My doctor put me on the combined pill which certainly helped me, however for that 7-day break between packs I would get my period (at least I now knew when AF would appear) they were still painful but not as bad. I would continue to go to the doctor over the next few years with severe abdominal pain. I had a doctor call me a drama queen, my mum and I were shocked. Safe to say I never saw that doctor again.

Finally seeing another doctor, he started to do some looking and run some tests. I was diagnosed with coeliac, IBS and at one point they thought maybe crohn’s, none of these were correct.

I was 21 when I was seeing a neurologist due to constant headaches and I was diagnosed with Chronic migraines. Which meant I had to come off the combined pill, I was offered the mini pill. But having been on the pill for 6/7 years I decided to give my body a rest and to see if my body had fixed itself. For the first month I was fine, then it all went downhill the pain during my period was awful worse than I’d ever experienced it. It was only a few months after being off the pill and it seemed liked every month the pain was getting more frequent. Not only was I experiencing pain during but for at least a week before as well. Eventually I would start feeling pain during ovulation as well, I was now in pain 3 weeks out of 4.  I moved with my mum shortly after turning 22 and joined a new practice. My new doctor was amazing the first doctor to take me seriously, it didn’t feel like we were just going through the motions. I really didn’t think there was anything to be done after being misdiagnosed and told all my life that what I was feeling was normal. I eventually decided to ask my doctor to put me back on the combined pill even though I knew it increased my risk of having a stroke. He obviously wouldn’t and asked about the history behind my periods. This was the first time anyone had ever mentioned the words endometriosis to me, he referred me to a gynaecologist. I had an appointment the next month, the doctor asked me to describe what I experience and as soon as I’d finished talking he said it sounded like it was most definitely Endometriosis but the only way to confirm it was a laparoscopy. I’ve had a fear of hospitals since I was 3 when I had my tonsils and adenoids removed. So, I declined the laparoscopy he said he would give me 3 months to think about it and gave me his secretaries number to call if I wanted to have the procedure. It only took me to my next period to decided I had to do it the pain was now constant, and I always felt sick. So, I was put on the list and quickly received my surgery date May 2016 only a month away, I didn’t think it would come that quick. Surgery date came and there were 6 of us being seen that day, I was second on the list. I can’t remember much about the day as I was asleep most of the time due to the anaesthetic. I just remember being told I had stage 4 endometriosis and they couldn’t do anything with it as it required a lengthy surgery they did not have the time to do that day. I was told we would discuss everything further the following month at my follow up. The following month I went to see my doctor and he told me my only option was a further surgery which either he could do, or he could refer me to a specialist. I had already done my research and knew he shouldn’t even be offering to do the surgery as he did not have the technical skill or experience. I quickly opted for the specialist, he told me the current waitlist for a consult alone was 8 months. So, my mum looked up the specialist’s details and found he ran a private practice as well, so she booked me an appointment to see him the next month. She made sure he had access to my files and surgery case notes, my appointment couldn’t come quick enough. He agreed that I needed excision surgery and would require other surgeons there who specialise in bowl and bladder due to the extensive spread of the disease. We wouldn’t be able to go private as the hospital couldn’t have the team they would require. So, I would have to go onto his NHS waiting list, which he didn’t know how long it currently was. He would be in his NHS office the next week so would give his secretary details then. I received a letter soon after to say I was on the list and gave details of how to contact his secretary. My mum was in full on let’s go mode she wanted to know how long I would wait, so she phoned the secretary several times to chase up a surgery date for me. She eventually prevailed and got me a date of 18^th October 2016, I was so happy and so scared. It felt like an age waiting for the day to come around, it was the 17^th and I was being admitted so they could get tests done. It was me and another girl in one room, both there for the same thing. Both apprehensive for the next day, the day passed quickly enough with the tests and doctors coming around to talk through what would be happening. The following day my room mate was first, she was away for what felt like eternity. I was bored waiting and starving! Finally, someone came to collect me, I was wheeled down to the theatre. Where the nurses prepared me, and got me onto the operating table. The next thing I knew I was coming around in recovery the nurse asked me how I was, and I told her I was in pain, so she gave me some morphine. I was once again knocked out and the next time I woke up was back in my room with my mum beside my bed. I had slept most of the day and when the doctors came around I was still out of it, so they said they’d discuss everything with me the next day. The next day I felt very rested and surprisingly good (probably all the morphine) the doctors came around just after breakfast and went through what happened with me. All my organs had been stuck together and stuck to the lining of my back, my uterus was pulled up and tilted. It had taken them almost 4 hours as it was a complex surgery, but they said that was it. They freed everything up and excised the endo, I couldn’t believe it I was fixed and looking forward to being pain free.