Posted in Memoir

Endometriosis – My Story

From one who suffered this terrible illness, to all those women who are cursed with it today.

At around the age of 22 I started to become aware of a pain in my right side. What began as a mild ache, soon became a permanent throb which cascaded from my side, through to my back and down my right leg. I started taking ibuprofen to ease the pain and for reasons,unknown to me now, as it is lost in a haze of pain and memory loss, I put up with it for almost 2 years. One evening, however, I was rushed into the overnight surgery at my local health centre and was given a pain killing injection and referred to hospital the following day. This is where I had my first meeting with a gynaecologist who, after performing an unpleasant internal scan, told me I had a large cyst which was completely swallowing my right ovary and a small cyst on my left; he told me I would have to be operated on and I would inevitably lose my right ovary.

Two months later and I woke from anethstetic to find out that:

  1.  I still had both ovaries but that the cysts had been successfully drained.
  2.  The surgeons had still cut me open which meant I was immobile for twelve weeks.
  3.  My cysts were not cancer and finally
  4.  I had endometriosis.

At the time I was hooked up to a morphine drip and falling in and out of sleep but they were kind enough to leave a leaflet by my bed in case I should want to know more about my illness and yes, it is an illness.

Twenty years ago endometriosis was regarded as ‘a condition’ that occurs in a percentage of woman rather than an actual illness. There was little if any literature about either the cause or effects of my diagnosis and the internet was merely a baby at the time and a stranger to me. It was only as the years progressed I realised how much endometriosis affects everyday life.

So I left the hospital with stitches in my lower abdomen and a leaflet.  I was advised to visit my doctors to discuss my future treatment. The following week my GP told me that  there was a high chance that I would be infertile. This was not a huge issue to me as I was pretty certain that I didn’t want children, unlike many women who are desperate for a family. Still, I was not given the option to have my ovaries or womb removed as I was still of child-bearing age. Instead I was put on the pill. I protested at the time as I had been on the pill in the past for contraceptive reasons and it did not agree with me. Now however, I had a female partner and the chance of becoming pregnant by my partner at the time was impossible, The pill, however, was my only option.

I put on weight, my periods were all over the place, I bled through the pill, my Pre Menstrual Tension increased and I felt depressed. I told the doctor that the mini pill was not working so he gave me a different kind. This medication worked as well as the previous and I gave up. During this time I was employed as a full-time manager and worked on average 48 hour a week. Over the years I learned to ignore the pain until it reached its peak again.

Ten years later I was sent back into hospital for keyhole surgery to drain two large cysts caused by endometriosis. I left hospital and was put on another contraceptive which once again made me feel ill. I came of it myself. I felt that no one wanted to listen to me. I asked for a hysterectomy but was refused. At 34 I felt that I was in a position to make up my own mind about whether I wanted children or not but like before I was refused due to my age.

Four years later I felt the pains increasing again, I was suffering from mild depression, chronic fatigue and a general feeling of unwell. I went back to the hospital gynaecologist who told me my endometriosis was so advanced that my ovaries were stuck together on the right side which were also attached to my womb and bowel. I had to return for keyhole surgery to have the cysts drained and the ovaries, womb and bowel unstuck. The procedure was long and afterwards very painful. I lost more time of work and it took longer to heal. Afterwards I was given a 6 month course of contraceptive injections to slow down the endometriosis. The injections gave me menopausal symptoms which at the time were incredibly unhelpful as I was in a difficult relationship and my mother had just passed away. I never went for the last injection, the night sweats were too much to cope with.

2 years later, and at the end of my tether, I went to see a doctor regarding the pain in my side, I told the doctor it was a cyst as I knew the pain only too well. He asked me what treatment I would like and I told him I wanted a hysterectomy. He referred me to the gynaecologist here in Stirling who told me I would have the operation within a month as there was nothing else that they could do for me, all the treatment that I had received to date was to slow down the illness.

It is two years since my operation. I am on 2mg of HRT per day. This was increased from 1mg after a year due to itchy skin, sweating and anxiety. The HRT is effective. I do not get hormonal flushes, anxiety or pain. The only side effect is breast tenderness which I take evening primrose oil for. It does work. I plan to be on my HRT for at least another 8 years. I am almost 44 years of age and I feel great.

I remember  lying in bed shortly after my hysterectomy and I got a pain in my right leg, similar to the pain I had when I had a cyst. I had a realisation at that moment that I was no longer in pain from the endometriosis, and that this was just an ache that would go away. I had endometriotic pain for so many years that I just got used to it always being there.
I feel healthy for the first time in so many years and I no longer have fatigue. The strangest thing that has happened since I had my hysterectomy is that my long-term memory has improved, so much so that I am now remembering people quicker than my brain can identify where I know them from. I am remembering things about my childhood that had gone years ago. Unfortunately, there is a twenty year chunk of memory that is so foggy that it is almost gone.

It upsets me still that I had to endure this for so many years which is why wanted to share that with you. 17 years of pain because I was still of good child-bearing age, 17 years of not being able to make decisions about my own body. We women should not be made to suffer this illness if we chose to not have children. So many years of my life could have been different if I was given that choice. However, for me, I  look forward to a healthy happy future. And for you, if you are in pain or suffering from this illness, seek advice. You are not alone. For further information on endometriosis,



Writer and Poet. MLitt Creative Writing BA Hons English Literature

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