Endometriosis Action Month at St Wilfrid’s Hospice

At St Wilfrid’s Hospice, we are proud to be an Endometriosis Friendly Employer with Endometriosis UK. This means that we are working together to breakdown taboos, raise awareness and support our employees with endometriosis.

With March being Endometriosis Action Month, our Corporate Fundraiser, Debra Elliott, has kindly shared her story with us about her endometriosis journey.

‘Endometriosis is a long-term condition in which tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. In the UK, around 1.5 million women, and those assigned female at birth, are living with endometriosis. The condition can cause severe pain and problems with fertility.

Since I was 13 years old, I suffered with heavy periods, and they got a lot worse as I got older. By the time I was in my early twenties, my symptoms were awful – I had abdominal pain, bloating and heavy periods lasting over eight days every single month. I kept going to my GP but they just kept telling me that it was all normal and “that’s what being a woman is like.”

After 11 years of suffering with the condition, I suddenly developed symptoms of a fever, sickness and agonising stomach pains. I was seen by an on-call doctor who incorrectly believed I had appendicitis. After multiple tests and examinations at the hospital, I was told I had another cyst on my womb, having previously had one removed the year before. They said I needed to see my GP to be referred to Gynecology. I waited 12 months for an appointment at Pembury Hospital. The Gynecologist couldn’t believe I had been having issues for over 11 years without a thorough investigation.  Six months later, I had a hysteroscopic resection into my womb, a dye test and a laparoscopy into my belly button. Just before the Gynecologist was about to finish the surgery, he lifted my womb and found that the underside was covered in endometriosis, which he then removed.

After the surgery, I was told they’d found endometriosis and removed it. However, they didn’t go into any detail about what it was and told me to Google anything I wanted to know about it. I decided to contact Endometriosis UK for advice and guidance, and they were really helpful and helped me to understand my condition. One week after my surgery, I developed an infection, which was mistaken as a bug by my GP. It was only after I spoke to a pharmacist, that I was told to see my GP again, who then prescribed me antibiotics for an infection in my incision. In the end, I had eight weeks off work to recover from the surgery and infection. After I had recovered, all my symptoms were gone and I felt so relieved.

Less than six months after my recovery, every single one of my symptoms had returned. I was once again in agony with endometriosis. I couldn’t believe it. My periods had become so bad, I was having to sit on bin liners in my car and put towels over my bed sheets to protect them.

Two years later, I was referred to another Gynecologist, this time at Haywards Heath Hospital, and was offered the endometriosis surgery again. After previously going through the surgery and painful recovery, I knew that I didn’t want to have it again; I knew it might only provide me with relief for a short period of time, and my symptoms were a lot worse after the surgery compared to before. The Gynecologist understood, but she also mentioned that if I’d been advised to go on contraception after my first surgery, the endometriosis may not have returned so quickly. I’d had no aftercare from my previous surgery so had no idea. If I’d had the right aftercare and follow-up appointments, I might have understood more about endometriosis, and I could have had a different outcome. The Gynecologist also offered me a hysterectomy but I declined. Being a woman in my thirties, this wasn’t what I wanted. She then suggested pregnancy, which again, wasn’t the right option for me, and I found the suggestion to be quite insensitive due to the fertility problems that endometriosis sufferers can have.

I’ve had to come to terms with the fact that I have endometriosis and the chronic symptoms that come with the condition. I’ve learned to manage it with daily supplements, painkillers, lifestyle changes and products such as hot water bottles and heated pads.

I am very lucky to have a great family and group of friends who are so supportive of my condition. I’ve joined online support groups and found them very comforting as I now know I’m not the only person going through this journey. I’ve made it my mission to raise awareness about endometriosis to help other people who are in similar situations to me. I’ve held an Endometriosis Awareness Morning, and I regularly took part in the Endometriosis March which took place every year until 2021.

I’ve found my employer, St Wilfrid’s Hospice, to be very supportive and my manager always tells me to work from home when I need to. We have Endo Champions at the hospice, which is a group I am a part of, to raise awareness about endometriosis to all our staff and volunteers.

We are holding a public awareness stand at the hospice in The Street on Friday 22nd March, and I encourage everybody who is interested in knowing more about endometriosis, to come down and have a chat with us. We will be available between 10am – 3pm.

You can also find more information about endometriosis and the support available at endometriosis-uk.org.’

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