Endometriosis is a long-term condition where tissue similar to the lining of the womb grows in other places in the body, such as the ovaries and fallopian tubes. Around 1.5 million women and those assigned female at birth in the UK are living with it.

St Wilfrid’s Hospice is proud to be an Endometriosis Friendly Employer, working with Endometriosis UK to break down taboos, raise awareness and support our employees affected by endometriosis. As March is Endometriosis Action Month, our People Director, George, has shared her story below.

“My journey with endometriosis began in the late 90s. I first went to the doctors after repeatedly experiencing abdominal and pelvic pain, and over the next three years I underwent various tests. When these all came back normal, my GP told me it must be irritable bowel syndrome (IBS). I was given a leaflet and that was that. I suffered frequently over the next few years, and due to the psychological effects of constant pain, I was diagnosed with depression and prescribed antidepressants.

Throughout my two pregnancies in 2004 and 2007 I was pain-free. I had a wonderful six years thinking that pregnancy had somehow cured my IBS, but the pain eventually returned and I was put back on painkillers and strong anti-inflammatories. This continued through to 2014, when the strength of painkillers was increased.

I managed on a cocktail of medication until 2016, when my menstrual cycle became unmanageable on top of the pelvic pain. I went back to my doctor, who referred me for another ultrasound. The scan revealed blood in my pelvic cavity, and the sonographer asked if anyone had ever mentioned endometriosis to me. I had never heard of it.

I was referred to the gynaecology team and did my own research, finding out as much as I could about endometriosis and the symptoms. It just fit. By this point the pain was so severe it would make me sick, and I was unable to leave the house for days at a time.

In late 2016 I underwent a laparoscopic investigation. I was nervous but relieved it was finally being looked into and taken seriously. After the procedure, the gynaecologist was quite dismissive, telling me he had found an insignificant amount of endometriosis but nothing that would be causing abnormal bleeding or the level of pain I described. I was devastated when they discharged me. I started to question whether it was all in my head, or whether I was making too big a deal of it.

I went back to my GP the following year. I was still taking a lot of medication and so fed up that I asked for a hysterectomy. I was referred to the gynaecology team again, but this time I saw a different consultant. Right from the outset the experience was different. He went through all my symptoms with me and agreed it was very likely endometriosis.

In 2018 I was put into a medical menopause to see what treatment might help. This involved a slow-release implant injected monthly for a minimum of six months. It greatly improved my symptoms, and on that basis my consultant agreed I could have a hysterectomy with bilateral salpingo-oophorectomy, removing my ovaries and fallopian tubes along with my uterus.

I had the surgery in late 2019. I was told I would likely be in theatre for about an hour to 90 minutes, but it ended up taking nearly five hours. Once in theatre they discovered I had severe endometriosis and significant scarring, which took a considerable time to remove. During my recovery, I asked the consultant about my original IBS diagnosis and was told it is extremely unlikely that I ever had it.

It took 19 years to get a diagnosis from my first visit to the doctors. It has been a long process and I have often felt alone, angry and despairing. I am now fully recovered from my hysterectomy, and my endometriosis is under control for the time being, but I live with the knowledge that it could come back.

I am very lucky to have great family and friends, but it is hard to explain the impact of an unseen chronic condition, and that can feel very isolating. I joined a support group and knowing I’m not the only person to have gone through this is genuinely comforting.

Throughout my journey I have worked for seven different organisations with varying degrees of support. When you have a condition like endometriosis you often find yourself having to explain what it is, what the symptoms are and what support you need, and each time you get a new manager you have to go through it all over again. It’s exhausting.

I have worked at St Wilfrid’s for eight years now and the support I have received has been amazing. I have been able to work from home when my symptoms prevented me from attending the workplace, and they accommodated eight weeks off following my hysterectomy with a phased return to allow for complete recovery. By raising the profile of endometriosis within the workplace and becoming an Endometriosis Friendly Employer, others can feel confident of a compassionate and understanding response when speaking to their manager or the People Team.”

If you would like to find out more about endometriosis and the support available, please visit endometriosis-uk.org.