Endometriosis and Me

A little about me, I’m Louise. At 17 years old, I was diagnosed with Endometriosis, after 4 years of fighting to be heard because ‘I was too young to suffer from Endometriosis’. I’ve never felt normal; struggling to get out of bed every morning because I couldn’t sleep from fear of leaking, collapsing in the school corridors due to being in so much pain that standing was just too difficult, feeling permanently sick, whatever I ate. The doctor’s solution, put me on the mini pill, give me extra strong painkillers and anti-sickness tablets. With each new symptom, the doctors gave me a new medication – antacids, new painkillers, and another round of laxatives.

At 16, I was trying to sit my GCSE’s. Having missed so much school and constantly fighting the feeling of being unwell, the stress of it all got too much. I ended up with a rash called Pityriasis rosea all over my body – so painful and itchy I couldn’t sit for long periods of time. Perfect when you are expected to sit for 2 hours completing an exam. All in all, not fun.

By the age of 17, I had been tested for everything to do with my digestive system – Coeliac disease, Crohn’s, Slow digestion. The list goes on and on. I would go back to the hospital every few months having had more blood tests and more doctors poking at me with just another thing I didn’t have – telling them it wasn’t my digestive track that was the problem, the cause was my womb. They just couldn’t see it. After years of fighting, they came up with nothing and finally referred me to the Gynaecologist. I finally thought I was having a break through and someone would finally be on my side and help. How wrong I was! After a 5-minute consultation and internal examination, the doctor told me that I had all the symptoms for endometriosis but it probably wasn’t. They’d send me for a laparoscopy but I should be prepared for nothing to come back – because I was just simply too young.

Months later, I was finally at my laparoscopy appointment, being shown through the paperwork and signing lots of documents, everyone saying it would be a quick 30-minute check and that when they found nothing I’d feel better. Again, sat here now I want to just hit my head on the table. 20 minutes before I was due to go in, they came back with a quick little amendment on my paperwork for me to sign – ‘if they found any cells, I give them permission to remove them today’. Well, unbeknown to me, over 4 hours later while my sister was panicking in the waiting room being told nothing about what was going on, I came around from my anaesthetic in the most pain I’d ever felt. My whole body felt on fire and my abdomen felt like it had just been stabbed (which, of course, it had been – many times!)

I was due to stay in hospital overnight so they could manage my pain and my recovery from what was far more serious that they previously expected, with endometrial cells growing all over my right ovary and the back of my uterus. I was terrified of what the expect, having never been in a hospital ward for more than a couple of hours before, but I met some of the most amazing women going through a whole array of different challenges – from ovarian cysts to complete hysterectomies – making me far more at home and comfortable than I expected. Nurses popping in every couple of hours with more pain meds and giving me support getting in and out of bed so that I could go to the toilet or get more comfortable.

Now the bad news, the surgeon popped in the next morning to check on me and give me an update on what had happened and the diagnosis. It was, in fact, Endometriosis and was far worse than they thought it would be at ‘such a young age’. I nearly laughed out loud. I finally won. I finally got my diagnosis. Not that it was any good, he proceeded to tell me there was a 50% chance the cells would grow back and it was something I was going to live with – no cure, no meds to manage. Nothing. I could go back on the pill, as it could help reduce symptoms but that was it. 2 hours later I was discharged and I was off the books – not check-in, no yearly check-up. I had my diagnosis and was left to fed for myself.

I researched everything I could get my hands on, looked up every space I could that would give me an idea on what I could do to help give me a normal life. Progesterone was basically the only option I had, so at 17, I went on the progesterone injection. Every 10 weeks I would be back at the clinic to get stabbed all over again. Any longer than 10 weeks between ‘top-ups’ and I would start to bleed. After graduating from university, I couldn’t imagine trying to get a job while every 10 weeks having to take time off to get my injection so I changed to the implant – same hormones so surely the same effect?

At 24, after 2 years of the implant and generally pretty good management of my symptoms, the rug got pulled out from underneath me. I had no idea what was happening and we were in a worldwide lockdown so no one could help. I was an emotional wreck (assuming it was just the feeling of being alone and shut in, I tried to get on with it). Then came the hot flushes that were so bad I would be walking my dog in shorts and strappy t-shirts in the middle of winter. I couldn’t eat without feeling sick, I couldn’t get out of bed for the pain, I felt like I was back where I was 10 years earlier. After finally getting through to the doctor they diagnosed me with Rosacea (not sure how you do that over the phone but that’s a topic for another time) and said I should get on fine with symptom management. We all know that doesn’t work for long.

As lockdown lifted, I was finally given an opportunity that has really been pivotal in understanding my body. I found a Nutritional Therapist and she gave me everything. With an adjustment to my diet and some simple lifestyle changes, I could live my normal life again. She opened a door for me into a whole world that allowed me to be in control of my body and take my life back.

Now, at 27, I’m far from ‘cured’ and ‘perfect’ but I manage everyday as it comes and feel like I have my life in my hands now – not living in a shell or avoiding life. I have completed my studies in Nutritional Therapy and want to give the gift I was given to others – share how amazing it is to feel like me again and how easy it to make you feel like you again.