March is endometriosis awareness month and this is my story

March is endometriosis awareness month. Endometriosis is a chronic disease for which there is no cure. I would like to share a few facts and figures from the Endometriosis UK website:

• 1 in 10 women of reproductive age in the UK suffer from endometriosis.
• 10% of women world wide have endometriosis - that’s 176 million worldwide.
• The prevalence of endometriosis in women with infertility be as high as to 30–50%.
• Endometriosis is the second most common gynaecological condition in the UK.
• Endometriosis affects 1.5 million women, a similar number of women affected by diabetes.
• On average it takes 7.5 years from onset of symptoms to get a diagnosis.
• Endometriosis costs the UK economy £8.2bn a year in treatment, loss of work and healthcare costs.
• The cause of endometriosis is unknown and there is no definite cure.

These facts and figures are shocking. I myself had no idea how prevalent endometriosis is and before I had my diagnosis, I had never even heard of it before. I want to share my story with endometriosis and hopefully raise some awareness of this devastating disease.

A long and painful journey

My issues with menstruation started early. Pretty much from my first period I had horrible cramps. Within months the cramps became so bad that I could hardly walk. I had just started secondary school and each month I had to miss a day of school so I could lie curled up in a ball in bed, trying not to move for fear of triggering intense pain. My older sister breezed through her periods with barely any cramps and my mother had never experienced cramping either, so I did not receive much sympathy. My mother accused me of exaggerating my debilitating pain, although she did take me to the doctor.

The doctor was no use at all. While he was happy enough to prescribe ever increasing doses of painkillers, he maintained that my cramps were just a normal part of menstruation and that nothing was wrong. He also suggested that I greatly exaggerated my pain levels and that I should just toughen up. At no point did anyone (neither my parents nor my doctor) propose I should see a gynaecologist. Everyone seemed to believe that this was normal and that there was something wrong with me not being able to handle menstrual cramping.

At one point I was using the heaviest doses of painkillers I was legally allowed to take. Looking back, I am staggered that my parents thought it was all right for a 16 year old girl to take codeine on a monthly basis without trying to find out if anything else is wrong. When I was 17 I started on the pill which helped a little. At least on the birth control pill I didn't bleed out each month and I knew when I would get my period so I could organise my life around it. I got better at handling the pain, taking the bus to school rather than cycling, moving as little as possible and curling up as much as I could. I made it through secondary school and university without consulting any more doctors about my pain. I had accepted that it was all just me.

Diagnosis

After uni I got married. I was still on the pill, but I had mastered not showing how much pain I was in during my period. I limited my social outings when I was menstruating, but still went to work. Can't call in sick once a month, right? After a few years my husband and I decided to try for a baby, so I went off the pill. I got pregnant relatively easily, but sadly suffered a miscarriage. Although it was sad to lose the baby, it was a blessing in disguise.

You see, after the miscarriage and the resulting D&C, I started having strange pains. My gynaecologist, worried about a possible infection, admitted me to hospital and pumped me full of antibiotics. After a week of painful pelvic examinations and antibiotics that achieved nothing, my doctor decided to do a laparoscopy to see what was wrong.

What was supposed to be a 20 minute exploratory surgery became a 3 hour fight against endometriosis. When I came out of the recovery room, the gynaecologist delivered the diagnosis of extensive endometriosis. "Did you never have painful periods?" he asked. "With that much endometriosis I would have expected you to be in severe pain."

I can't tell you how relieved I felt to hear this. While I wasn't happy to be told I had an incurable disease, I was relieved that someone finally acknowledged that my pain was real, and that I had a real disease that was causing it. It was not all in my head. And while endometriosis isn't curable, with the right treatment, it can be kept at bay for quite a while.

Hysterectomy

I am one of the lucky ones. My gynaecologist was an expert in endometriosis and had managed to remove all the endometriosis tissue. I was able to conceive again (twice) and have two healthy children. The endometriosis stayed away for almost four years. Which might not sound like much, but many women have endometriosis recur as soon as six months after surgery.

I muddled on with increasing levels of pain for six more years, until the pelvic pain became a constant in my life, not just during menstruation. I had moved countries by this time and sought out an endometriosis specialist in the UK. Luckily for me, the UK has specialist endometriosis centres, so I fought with my GP to be referred directly to my nearest centre. My GP tried to question that I actually had endometriosis, but I fought for my right to be referred to a specialist of my choice and I won. A few months later I saw the specialist who agreed to perform a hysterectomy.

A hysterectomy is not necessary for the treatment of endometriosis, but as long as you are ovulating and menstruating, the endometriosis will come back. A full hysterectomy increases the chances of the endometriosis never returning. And a hysterectomy also meant no more heavy periods where I bled so much I had to change my pad every hour. (I could never use tampons.)

And so, a year and a half ago, at the age of 39 I had my hysterectomy. I also lost my ovaries and cervix. My doctor removed any endometriosis from my other organs as well. After the surgery, a biopsy revealed that I also had adenomyosis, something that often occurs in women who also suffer from endometriosis. The surgery was very successful for me. I have a much better life now that my life isn't ruled by chronic debilitating pain and heavy bleeding. I wish I had had my hysterectomy sooner, especially since I already had two kids and our family was complete.

Consequences

It took me 17 years to get my diagnosis. That is far above the norm for the UK, which, at an average of 7.5 years, is already shockingly long. The consequence of my doctor not taking my pain seriously is that I have been conditioned to doubt my own pain. When I had kidney stones a few years ago, I was unable to acknowledge the pain I was in until I literally passed out. When nurses ask me to assess my pain on a scale from 1 to 10, I always score on the low side, even though I am barely able to cope.

And of course the other consequence is how much I suffered needlessly. All the days I spent in pain. All the social outings I had to miss because of my period. All the years in which I endured painful sex because I didn't think there was anything wrong.

The medical profession has to do better. While the "general public" should be more aware of endometriosis, doctors should take female pain more serious. And I hope that one day we will get to the bottom of what causes endometriosis and how it can be cured successfully.