March is Endometriosis Awareness month. Endometriosis and infertility were the worst experiences of my life. This from a lady who was thrown off a building as a teen! I started to experience pelvic pain at eleven years of age, and often ended up in hospital. I would vomit and scream from the agony. Pethidine rarely touched the sides in casualty. I saw gynecologist’s who said the pain would settle, and I had ultrasounds, which showed nothing. I was on the pill by fourteen, which did nothing to settle the pain. I wasn’t diagnosed until my mid-twenties. I saw a new spinal surgeon and mentioned that my lower back and sciatic pain ramped up the week a period. He asked my GP to refer me to a gynecologist with the belief I had endometriosis. Indeed I did. It was the size of oranges, clumped together outside my bowel, bladder, and pressing against my sciatic nerve. The first surgeon burnt it off, which caused blood-filled cysts. Within six months, I was in such agony I had to see an endo specialist for further surgery.
I was told I was infertile, and I declared I wanted to try IVF immediately, whilst I had a clean pelvis. The IVF clinic knew little about endometriosis, and the drugs I was on made it flare up, rather like pouring petrol onto a fire. I ended up in a maternity ward for a week on morphine. I had two more cycles with this particular clinic, before changing. The new place honoured my gut instincts as to what drugs I should be on and those I couldn’t tolerate. I fell pregnant! I felt the best I had since I was eleven, even with the extra pressure on my fused spine. Within months of my little girl being born, the endometriosis came back. It was everywhere. I had my daughter’s cord blood stored when she was born, in the hope that she will be spared this cruel disease. They are discovering genetic links and also that it is an auto-immune disorder.
I had more surgery, then went onto drugs to trick my body into thinking it was in menopause. With already weakened bones, I slipped over and broke my back in three places. I had to give up the medication. I spent thousands on alternative therapies. I exercised each day,and had a vegetarian diet but despite all my efforts, it raged. I wanted to give my daughter a sibling, and to feel as well as I had when pregnant with her. In 2010, I went in for more surgery. The doctor severed the main nerve to my pelvis, hoping it would provide pain relief. Once again, it was everywhere. I woke in my room, felt dizzy and fell to the floor. I looked at my stomach and it was beet-red. My blood pressure had dropped rapidly by the time the nurse ran in. I was haemorrhaging. I was pumped full of blood and doctors stayed with me overnight as I wasn’t stable enough to go back to surgery. The next morning, they operated and they found the bleed. It was a slow recovery, and a traumatic one.
When I saw the surgeon, he retrieved a photo he had taken of my fallopian tube, wondrously ovulating. A little egg was present, perfect and waiting to begin its journey. I cried. You see, straight after surgery, I went into premature menopause. I couldn’t have another child. My bones are fragile, and I face twenty years of not being exposed to natural protective hormones. If I take HRT, it could well feed even a pinprick of endometriosis in my pelvis. Endometriosis has made me really unwell at times and brought me to my knees. I am determined that my daughter’s generation shall have better treatment options, be diagnosed promptly, and have better outcomes. Let yellow rule the month of March!