One woman’s continuous struggle with Endometriosis
When it first happened, I thought that the blood would be bright red. Nobody told me that it might look an old, rusty brown colour. I was just twelve and a half. It was my first menstrual period.
I remember being given ‘sanitary towels’ that they seemed like wearing nappies. I was relieved to learn about the alternative. Tampax. “It’s my life…” Freedom.
At first the pain wasn’t too bad. In fact, my overriding memory at the start is of having to wear my PE kit one Friday afternoon because my flimsy school summer dress was soiled in blood.
Whilst I had no interest in sports at school, I used to do a lot of classical ballet and could easily do many of the ‘recommended’ stretches for relieving menstrual cramps.
By the time it came for me to do my GCSE exams, I had already spent several monthly mornings in Sick Bay. I had already tried the first line in basic ‘home’ pain management─Paracetamol and hot baths.
When it came to my A-levels, my then GP was more than happy to prescribe the Pill. I remember my mother saying that she could not believe that there was nothing better for period pain (having suffered herself). This was in 1993.
I then tried various forms of the Contraceptive Pill whilst at university. I would find them successful if they did not make me want to eat cake all week, or if I could physically stand up without crumpling in pain when my period was due.
My first visit to a gynaecologist was in 1994. I was just nineteen. He was quite an old man. I remember him saying that I just had ‘Primary Dysmenorrhoea’ (Pre-childbirth period pain) and that it would all improve when I had a baby. It was a horrible and degrading experience.
Not long after I graduated in 1997 I remember having some ‘period pain’ so bad that I passed out. The pain was so intense that I was completely incapacitated. It didn’t take my first employer long to realise that I was taking half and full days off on a rather cyclical basis. It was humiliating to say the least to have to explain to the Chief Executive (a man in his late 50s) why I was absent on a monthly basis. I was urged to ‘do something about it.’
My latest GP by this time also thought that having a baby would solve all my problems. I was only twenty three by this time, and had only just started my career.
I saw another gynaecologist who gave me a scan, which showed nothing, and also did a laparoscopy where she casually mentioned that she found ‘tiny amounts’ of endometriosis, but that there was nothing that could be done, and that it might be worth me following a low-wheat diet, and keep taking the painkillers.
I tried the ‘healthy and nutritious’ diet approach. I also tried a range of complementary and alternative therapies.
Another gynaecologist suggested a hysterectomy (and laughed), and then said, “Why not try a progesterone only pill?” I hated it─put on weight and was still in pain.
In 2000, another gynaecologist said after doing a laparoscopy that she couldn’t find anything other than old and dead endometriosis. I was told that my problem was psychological, and was sent to a Pain Management Consultant.
In 2002 I saw a gynaecologist who diagnosed that I had Moderate-Severe Endometriosis. It was also found to be in my bladder and later in my bowel. In 2003 I was diagnosed with ‘Moderate Clinical Depression’, and who can blame me?
Endometriosis is as yet a little-known and poorly understood condition where the menstrual flow escapes the uterus and is often found in other areas of the pelvis, and rarely elsewhere in the body. It can affect a woman’s fertility and cause a great deal of pain.
It is now 2006. I have just had two hospital admissions within a week of each other, to manage my pain. The second stay involved the use of morphine, a drug I thought used exclusively by Cancer patients. This condition has caused serious damage to both my career and long-term relationships.
I had six months off work in 2001, and have not managed to work full-time since then.
My last long-term relationship ended at the beginning of this year.
The pain is debilitating. My back feels as if it has been stabbed and my ovaries feel as if they have corkscrews going through them. I can hardly stand on the bad days. I have suffered from depression since 2003, and believe that this is very much related to the endometriosis.
Last year I was on of the lucky ones. I had tests for fertility, including a blood test, a scan, and a dye injected to see if my fallopian tubes were blocked. I passed all my tests, but as yet I am unsure if I want to have a baby.
What future can I offer a child when there are frequent days where I am unable to look after myself, quite aside from being single?
Recent treatment programmes have involved barbaric hormone injections which completely stop my periods, and then I take HRT to ‘put back’ some of the hormones I lose during this false menopause.
Just lately, (having found out I also have small fibroids and Polycystic Ovarian Syndrome) I asked my present gynaecologist if I could have a hysterectomy. I was told that I ‘could not’ because I am only 31 and because I am at an increased risk of heart disease etc., from being on HRT. Having a hysterectomy at this stage might shorten my life, as well as completely end the possibilities of having a child.
I find myself confused. When I end up in as much pain as I have been, I find that I would now wish for a shortened quantity of life, for quality of life.
As the adverts of Tampax used to say, “Tampax Freedom, it’s your life.” It is my life, and I believe that I have a lot left to do in it. Period.
Approximately two million women suffer from Endometriosis. To find out more visit Endometriosis UK at www.endo.org.uk.
Isobel Knight
February 2007
Postscript
I am presently happily on the GnRH analogue treatment method (Zoladex) which works really well on me.
