by Marcia Stephens
Many people won’t have ever heard of endometriosis, let alone be able to describe what it is, or understand the symptoms. I wanted to share with you some facts and figures about endometriosis, share my very personal, and painful, journey and give some insight into how the condition can fluctuate.
What is endometriosis?
Endometriosis (en-doh-me-tree-o-sis) is a gynaecological condition affecting at least 1 in 10 females in the UK. Endometriosis occurs when cells that are similar to those that line the uterus grow elsewhere in the body. Most commonly, this is within the pelvis affecting the lining of the pelvis, and the ovaries. Being as this is all going on internally, endometriosis is very much within the classification of a hidden disability.
The number of sufferers is probably hugely underestimated as it takes on average eight years to be diagnosed, and many are sent away being told “it’s all part of being a woman” or “it’s Irritable bowel syndrome (IBS)”. Common symptoms include chronic pain, fatigue, depression, inability to conceive, constipation and/or diarrhoea.
A personal story
For me, I didn’t even know I had endometriosis until I was in my forties. I had painful periods all my life but nothing too bad that a few ibuprofen wouldn’t fix. As I got older, I started to suffer more and more symptoms and wasn’t really sure how they were all connected. I just found I was feeling really tired and depressed and didn’t want to socialise with my friends or be out of the house much. Also the symptoms came and went on any day or night of the month and weren’t linked to my period.
I was regularly dismissed by the medical profession and I found that very hard to deal with as I’d been taught to trust doctors. Eventually, I bravely requested my GP refer me onto a gynaecologist for investigations, which diagnosed endometriosis and explained a lot of my symptoms.
I was relieved to have a name for my condition - but I found the diagnosis overwhelming too. I had to do a lot of research myself to find out more about the condition and how to deal with it medically, and live with it.
In hindsight, I didn’t give myself enough time to come to terms with all the implications of my diagnosis and find out about options of treatment. As the doctor recommended more surgery, I went straight for that hoping it would help. That surgery was a hysterectomy and I had not appreciated how major that was; both physically and emotionally. Some months after the actual operation I realised I actually needed time to grieve for all the effects the diagnosis, and surgery had; my loss of fertility, my loss of physical fitness, and my loss of trust in the medical profession. If I’m honest, I am still very angry and that can come out as frustration or tears when in certain situations.
Challenges and consequences
My condition has improved but endometriosis is a chronic condition so is never going to be cured. The fluctuating nature of symptoms can still surprise me. I may have had no pain for a couple of months and then be made to stop whatever activity I’m doing due to unbearable pelvic pain. Unfortunately too the disruption to hormones causes me migraines and when I get a migraine I have to stop work as I can’t look at a screen and am often sick and extremely tired so need a break to rest and recuperate.
The fluctuation and severity of symptoms means I often don’t agree to do things too far in advance, or can’t commit to events such as theatre trips or concerts or helping out at church festivals or social meetings as they are held on a set date and I just don’t know in advance how I will be feeling. Equally I am someone who hates to let people down and as such would rather not volunteer to do something than say I will, and then have to pull out at the last minute. I’d rather say last minute I can help, what do you need help with? And make use of a good day, than the alternative of saying I will do it and then expecting others to fill in when I’m unable to help on a bad day.
What has helped?
For me, finding someone to talk to has benefitted my mental health and been instrumental in rebuilding my self-confidence. I have a counsellor I have sessions with regularly and have had various talking therapies in the past few years. I did ensure my counsellor understood endometriosis but still need support and time with others who suffer the condition so am involved with several charities and support groups.
Finding the positives
I now feel much more compassionate to others with invisible illnesses/hidden disabilities and remind myself not to judge people by outward appearances. This also extends to people who may say “no” and give no reason when asked to help, or be involved, or just be present at events.
I now appreciate we don’t all know how we are going to be feeling, or how able we are going to be on a set date. I appreciate it when I am asked to help at the last minute, or when people accept I may say “yes” now, but “no” later. When people then still continue to ask, this makes me feel more included and appreciated for who I am and what I can give.
Marcia Stephens is the Data Analyst within the Giving Directorate and been working with the NCI’s since January 2023. She is owner of a short haired exotic Persian cat called Jerry – though he thinks he is in charge at home!!