My experience

**TW – talks about surgery and infertility**

“You have stage 4 endometriosis” were the words that I heard when the consultant came to speak to me after surgery. I remember feeling validated that I finally knew what was wrong but angry that I was dismissed for many years previously. I had gone back and forward to doctors over the years with symptoms such as heavy and painful periods, pelvic pain, nausea and vomiting, bladder and bowel issues and fatigue. I remember I was told “it’s just a bad period” or “it’ll get better as you get older” and given the pill or other hormones.

Over the years I had multiple surgeries for endometriosis and the longest relief I got was about 4-6 weeks and then symptoms returned with a vengeance. The endometriosis was growing on different organs in my body and there were thick adhesions that were sticking my organs together causing severe pain. Endometriosis had damaged the nerves of my bladder which resulted in me having to self-catheterise up to 6/7x a day. I had 5 surgeries for the condition, and it got to a point I had tried everything to get some relief. I remember going to see my consultant and him recommending I go back on Zoladex which is an injection that puts you into a chemical menopause but there was nothing else he could do for me. I tried a few rounds of Zoladex just like he had said but I was still getting symptoms that were debilitating. I was having to take medication every day to manage the symptoms and to try and function but a lot of the time I was bed bound. I was so low, and I remember emailing my consultant to update on how I was doing and telling him honestly that “I couldn’t live like this anymore as it was too difficult” and they told me they didn’t know what else to do for me and left me to it. I researched different consultants across the UK who I could possibly reach out for help and the first one I found I had an appointment 1 week later. It was the best consultation I had ever had he listened to everything I said from when my symptoms first began, he did scans and bloods and then spoke to me about my options.

I knew surgery had to be the option as I had tried medications to manage the symptoms, but it wasn’t working. I had to make the most difficult decision and that was to have a total hysterectomy at the age of 24. I knew that this would be a decision I would have to make eventually but didn’t think it would be this young. They say that Endometriosis is a bad period, but for me it has meant losing organs, organ dysfunction and loss of fertility. I remember someone saying to me about having children and what if I was to meet a man who wanted kids and that I needed to seriously think about it. I didn’t let comments like this bother me because my quality of life was the main priority here and I wanted my life back. I know that if I want children in the future, I have the options of adoption or fostering.

There is no cure for Endometriosis, and I still have some symptoms and have to live with the damage it has caused to my bladder, but I have a better quality of life. My family and friends are such a huge support through all of this and I’m incredibly grateful because I know a lot of people may not have support. My experience is one of many and I don’t want anyone else to ever have to go through what I have. I want to be able to share my story and raise as much awareness as possible. Early intervention with endometriosis is key. If you are dismissed by one doctor, seek a second opinion because you know your body better than anyone else. There is support groups out there that can help.