By Becca Healy

After a debilitating flair up that lasted almost a month, Becca talks about the realities and dispels the misconceptions on endometriosis.

Photo of Leeds Canal by Becca Healy

Endometriosis is perhaps the most common but least understood chronic condition there is. It lurks inside so many of us. The NHS defines it as a condition where similar tissue to the lining of the womb grows in other places such as ovaries and fallopian tubes. It is most commonly found in the lower abdomen and pelvis, but it can grow anywhere.

Symptoms include pain in affected areas, painful periods, pain during intercourse, pain around exercise, nausea, difficulty getting pregnant, fatigue, depression… The symptoms are endless and unique to each individual. One person with endometriosis may have painful and heavy periods. Another may not experience this, but have debilitating pelvic pain and vice versa.

The complexity and lack of awareness make it so difficult to diagnose. Endometriosis UK says it can take on average 8 years and 10 months. For me, it has taken over 10 years and I still do not have a formal diagnosis. The only method of diagnosis is laparoscopic operation. A camera is inserted into the pelvis to assess the area for endometriosis. This is usually in tandem with removal, but this is crucially not curative.

The wait for laparoscopy currently in Leeds is 18 months for a gynaecological appointment to discuss the symptoms and 18 months waiting list for a laparoscopy. The private costs of this operation at a hospital in Leeds city centre is £6,000. If able to access this surgery, many more may operations be required as it often comes back, as quickly as 6 months after operation.

Most women or people with wombs have it for years and years before diagnosis. I started my period, aged 11. I have always had strong, fast-flowing and painful periods. I had been to the GP on countless occasions. Endometriosis often runs in families so if you are lucky enough to have the support of a relative who also suffers with painful periods, this often reinforces these symptoms are just the way of the period. Society offers the view that periods are something we should simply get on with. They are a fact of life that need and we must keep calm and carry on. For endometriosis sufferers, this is near impossible.

There is unfortunately no cure. Other management options are limited to the coil and the progesterone pill, which provides hormones to counteract endometriosis. Painkilling drugs such as codeine, naproxen and amitriptyline mask the pain for some. However sometimes endometriosis pain is so bad people lay on the floor of emergency rooms, screaming in pain and morphine doesn’t even touch the sides.

For people who live with the condition, pain management becomes part of daily life. Hot water bottles, heat pads and electric blankets are lifelines. Some people are permanently wrapped in electric heat pads to soothe the pain.

Life with chronic illness is exhausting. For me, there is a constant dull pain in my pelvis that fluctuates. Endometriosis is often found in tandem with other conditions such as IBS, painful bladder syndrome and PCOS. These combinations can make life even harder. Symptoms can worsen during a flare up and life can become unbearable. Sometimes this can be situated around or during a period. Other times, the cycle is irrelevant.

In mid July, I was hit with my period coming in the middle of working a bar at a busy festival. I was in so much pain, I became visibly pale and hunched over. I managed to leave the bar and walked around the festival in tears, utterly unable to control or resolve the pain I was in.

After returning home, my pelvic and lower back pain was unbearable and all consuming. I even struggled walking to Aldi and back, just a ten minute walk. I was in so much agony from simply walking, carrying a bag of four light items. I am twenty four and fairly active. I should not be this immobile.

This flare up has continued for over a month, even when my period ended. I was stuck inside, hammering codeine and naproxen. I felt so isolated from everyone. When I made it out briefly for a friend’s housewarming, I was even in pain when a friend hugged me. I felt even more isolated.

I equated this feeling to a period of time in second year where I was bed-bound with back pain and did all my university work from my bed for a period of two months. I went to the GP on countless occasions and at no time did they mention that this pain could be coming from endometriosis, despite my history of painful periods.

The future for endometriosis is rough. Scientists are working to find better ways to diagnose and treat the conditions. But for people all over the UK trapped in pain and on extensive waiting lists, this is a very limited source of hope. I’d urge you to reframe your understanding of endometriosis to see it as a chronic condition that affects both periods and life around those periods. If you have any of the above symptoms, go to your GP and advocate strongly to have these concerns explored properly. The chances are if you do not strongly advocate, you will be fobbed off just as so many sufferers are. It is not in your head.

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