March is endometriosis awareness month: my story

endometriosis

March is endometriosis awareness month and in particular in the UK, 3-11 March is endometriosis awareness week. In the UK it takes women an average of 7.5 years to receive a diagnosis. With 1.5 million women in the UK suffering from the condition, it’s really important to raise more awareness for this incurable disease.

It’s time for me to tell my story with endometriosis. I have referenced the condition on the blog before, mainly when talking about my hysterectomy, but today I want to share what life was like with endometriosis.

I had my first period when I was twelve. My mother had given me the most basic of sex education, so I knew what was happening when I saw the blood. What I wasn’t prepared for was how much it hurt. I was out playing with my friends when the first cramps happened. They hurt so much I had to go back home and lie on the couch, or rather, curled up in a ball praying the pain would stop soon. My mother, who never had any menstruation cramps in her life, was unsympathetic and accused me of exaggerating. She tossed me some mild painkillers, which only took the edge off a bit.

Things did not get better as the years went on. The pain increased every month. The first day of my period was always horrible. Heavy bleeding and pain so bad I couldn’t stand. I needed to have a day off school every month as I simply could not go to school. By now my mother couldn’t deny any longer that I wasn’t exaggerating and she brought me to the doctor’s. The doctor asked me a few cursory questions, then told my mother that cramping is normal and prescribed some painkillers.

As the years went on, the painkillers got heavier and heavier. My doctor never referred me to a gynaecologist and my mother never requested it. The doctor seemed to be of the opinion that painful cramping was just part of menstruation and I should just toughen it out. At one point as I was at the doctor’s again begging him to do something, I told him how I can’t even stand when I have my period. He looked at me and asked, “Aren’t you on your period now?” When I acknowledged that yes, I was, he said, “well, you were able to come to the appointment, weren’t you? It can’t be that bad then.”

I still shake with rage at this, just even writing these words. For 17 years I was led to believe that my pain wasn’t real, or if it was, it wasn’t really as bad as I told everyone it was. Eventually I stopped going to the doctor’s and accepted that my pain was just something I had to deal with. Once a month I would not be able to function properly from the pain I was in, but I was able to mask it with the help of a lot of painkillers. When I finished university and started a job I was even able to go to work during my period despite the pain.

I became sexually active and got married. Sex was sometimes painful, but the many years in which I suffered with pain – and the refusal of my doctors to acknowledge there was a problem – had made me doubt my own experience, and my own judgement regarding pain. I ignored the pain and never said anything. I got pregnant and suffered a miscarriage. After the D&C I had mysterious pains every time I sat down or got up, so I went back to my gynaecologist. After a week in the hospital during which I endured daily painful pelvic examinations, scans and intravenous antibiotics my doctor saw only one option left: a laparoscopy.

The laparoscopy, which was supposed to only be a 20 minute exploratory surgery, became a 3 hour fight to remove as much endometriosis as possible. My poor husband had no clue what was going on and suffered through those three hours imagining the worst. Receiving the news that I had extensive endometriosis was difficult for my husband, but music to my ears. Of course I was not happy to have a chronic disease, but for the first time in 17 years I knew that my pain was real. My pain was caused by something real, and wasn’t normal. I felt vindicated. Sure, the damage was done: to this day I still am unable to appropriately assess the pain I am in, but I finally had a name for my ailment.

Flash forward another 12 years. I am one of the lucky ones: I was able to conceive again (twice) and I have two wonderful sons. A year and a half ago I had to admit defeat though. The endometriosis was back – with a vengeance. I was always in pain, not just during my period. Sex was almost non existent and every month I practically bled out. I saw one of the world’s most renowned endometriosis specialists and he agreed to perform a hysterectomy.

At my follow up from the surgery my doctor told me that my poor womb was riddled with adenomyiosis. The endometriosis hadn’t been so bad this time around, most of the pain had been caused by adenomyosis. The only cure for which is a hysterectomy. It is stupid, but I needed that news to make me feel justified in having had the hysterectomy. Intense pelvic pain, the inability to have sex, and bleeding profusely during menstruation were not enough to justify this surgery for me. I had been conditioned to think – still! – that these were just “women’s issues” I really should have put up with.

Endometriosis is brutal. And it is very real. It is not easy to diagnose; it needs a laparoscopy to diagnose it, but it can be done. The UK has accredited endometriosis centres (BSGE) which you can be referred to. More information can be found on the endometriosis association website.

Just some stark statistics 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 miliion 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.

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