When I woke up from a laparoscopy last July my gynaecologist had a serious look on his face. For a few seconds I thought it was going to be the worst news imaginable, as he spoke with a worried tone in his voice. He said things were “pretty bad in there”, but luckily nothing more sinister. My uterus was stuck to my bowel and the ovaries were pulled back behind my uterus. My endometriosis had caused some serious problems. We would have to discuss the options.
In the past, doctors dismissed endometriosis simply as having painful periods, and pain relief was the only treatment.
My main symptom was a dragging, tearing pain that had slowly increased with time to the point of continuous daily pain. I had to give up running, and bowel movements were excruciating. Suffering was no longer an option.
Pelvic cavity
Endometriosis affects between 5 and 10 per cent of women during their childbearing years. This hormonal disease of the immune system occurs when the lining of the womb (endometrium) grows in areas outside the womb, in particular in the pelvic cavity.
Oestrogen causes the endometrium to thicken each month, but the displaced tissue has no way to exit the body. It becomes trapped, and scar tissue and adhesions can develop. Untreated, endometriosis can cause pain, fertility problems, or both, and can take years to diagnose.
In my case, a course of progesterone-only hormone supplements was recommended at first, with the aim of over-riding the oestrogen-loving disease.
I tried that for three months, but it barely masked the pain and it caused mood swings. The next option was an eight-month course of hormonal inhibitors that would work on the pituitary gland, bring on early menopause and then back to square one.
Most doctors recommend one of these hormonal treatments with an initial diagnosis of endometriosis as they are the least invasive and disruptive. The Mirena IUD is also suggested for some women.
Hysterectomy
Lastly, and the one my gynaecologist recommended, was a total hysterectomy and removal of the ovaries and fallopian tubes. This option, I knew from my experience in surgical nursing, was not to be taken lightly. A long, painful recovery and early menopause would follow, and that was never going to be easy in a busy house with three children.
The main plus was that we had decided our family was complete several years ago. But I still felt that this was very final, that I would never again feel the joy of giving life. Being 44, I was quite young to have a hysterectomy but also a little old to consider having another child. Web browsing, HysterSisters was very informative, and a few discussions with some nursing friends helped. Decision made, my taxi to the hospital arrived.
Every year, between 2,500 and 3,000 hysterectomies are performed in Ireland. The majority of women undergoing surgery are in their mid-40s, or older, and 80 per cent of these are for benign conditions.
The nurse who admitted me was attentive and thorough, even writing on my care plan that I was sensitive to cold. God bless her, it was snowing outside. Settling into my own room, gown on and white Ted stockings in place, I was actually looking forward to a little peace for a while, with full control of the television remote.
It was 7pm when I was finally wheeled to theatre. The pre-med was just kicking in so I asked my surgeon if I could hold on to my ovaries, as the fear of losing my female organs had hit home. Too many adhesions were pulling on them, he explained. I knew, and I agreed, and then it was a slow count from one to six while the theatre nurse rubbed the back of my hand.
Post-operative
In the recovery room, they told me the operation had gone well, and I was so relieved. My night nurse on the ward
was Heather from Belfast. She was there just when I needed her. The little cold cloth on my forehead was so soothing, and she replaced it every time she came in. She gave me just the right amount of pain relief at just the right time. Sleep came and the pain slipped away for a while.
The next day my pain was fairly severe, but every time I could feel it returning I rang the bell and asked for whatever I could have. I was regularly given little heat packs to place on my back; I’m sure they were from the lovely nurse who noted my sensitivity to cold on admission.
When Mum and Dad came to visit me, it was comforting to talk to my mum about her own experience. She had had a hysterectomy when she was in her 40s, although she wasn’t sure why, and she had certainly never heard of endometriosis. She just remembered being in unbearable pain for years before the surgery.
Endometriosis has been proven to have a genetic link, so I am watching this with my own daughter. She is already showing signs of pain each month, similar to my own as a teenager. I have spoken to her about it and we may consider hormonal therapy if her pain increases.
That night I had an image of an empty space inside me where my uterus had been, and the many internal stitches holding things together (I really have to stop looking at clips of actual hysterectomies on YouTube). I put on some soothing chill-out music. And then the tears came, and with them a sense of emptiness and finality.
Then came the joy of beating this disease. I do not have a terminal illness. I have three amazing and beautiful children. More tears of relief and happiness.
My hormones had definitely won the battle for my ovaries, but I had won the war against endometriosis. Bring on the HRT.