Living a life blighted by chronic pain

KIRSTI Horrocks is not your average teenager. While most are out having a good time, Kirsti’s evenings are often spent at home alone with her father.

When she does go out she is often forced back home long before the night is over.

Kirsti isn’t shy or unpopular: she suffers from endometriosis, a condition that causes such severe pain it dictates almost every aspect of her life. For sufferers like Kirsti it can be crippling. Jennifer Hollamby met her.

KIRSTI is only 19, but her battle with endometriosis has already forced her to face up to some very difficult problems.

Suicidal thoughts, possible infertility, problems at work and the loss of friends all loom large in the rollercoaster five years that she has just been through.

Endometriosis does not enjoy the high profile of some other women’s diseases, but it has already consumed a huge chunk of Kirsti’s teenage years.

The condition comes about when tissue which lines the uterus breaks away and forms growths on other organs in the body, resulting, in severe cases, in swelling, pain and tiredness as well as bloating and possible infertility.

For Kirsti, the aches get so bad that she has to take morphine every day just to bring her pain down to a more manageable level.

To help control her condition, she is given injections which shrink the growths and induce a temporary menopause, leaving her with the kind of menopausal symptoms which can floor women more than twice her age.

Unsurprisingly, the effect of these symptoms goes far beyond the physical and it has affected every aspect of the Alt teenager’s life.

She said: “I was in the cadets and wanted to become an army nurse, but I can’t now because I needed too many operations.

“I also missed most of the last year of school because I was so ill, so I got really bad results.

“And I’ve lost friends too. I can’t drink on this medication and I’m tired a lot too, so I can’t go out much. Their lives carry on and yours just stops.

“The worst thing is the fact that you can’t see it. People think you’re lying and there have been times in the past at college when I’ve been allowed to sit down and you can tell some people think you’re being soft, but the pain can be intolerable.

And for Kirsti, it isn’t just her personal life that is affected. Currently studying for an access to health course at Oldham College, with a view to becoming a nurse, she knows that her condition could blight her career before it has even started.

“I’ve had jobs where I’ve explained in the interview about my condition and they’ve said it was fine, but then they’ve been funny when I’ve had to take time off for medical appointments” she said.

Endometriosis flounders below the radar and in Kirsti’s case it took five years of unnecessary medical procedures and being passed between GPs and gynaecologists before she got a diagnosis.

And the fact that Kirsti also had irritable bowel syndrome and polycystic ovaries made diagnosing her endometriosis even more difficult.

“I got rushed to hospital a few times with excruciating stomach pains.” she said.

“On one occasion they took my appendix out when it later turned out there was nothing wrong with my appendix.

“I’ve had really unhelpful gynaecologists in the past who didn’t seem to take my symptoms seriously and some GPs have even asked me what endometriosis is.”

After five turbulent years, Kirsti is now with a new gynaecologist, but there’s still a long road ahead.

“The potential for infertility with endometriosis is hard to deal with. You get into a relationship and you don’t know when to bring it up” she said.

“I really feel that this condition needs more publicity. It takes over your whole body. It affects you physically and mentally so much.

“I think GPs need to be given more training in this field and young people should be told about this in school. My advice to women who are struggling with these symptoms is to keep pushing and pushing until you get the right diagnosis, because you will have to fight for it.”

Kirsti’s consultant Donald Macfoy, from the North Manchester General Hospital, said: “Endometriosis is quite an enigmatic condition and not all gynaecologists deal with it.

“Some women have little pain, but very severe endometriosis, while others are in a lot of pain but have a fairly mild form of the condition.

“One of the most common symptoms is pain which builds up during the menstrual cycle and eases when a period starts, but many women experience pain throughout the month.

“A small minority of my patients who have very severe endometriosis have been trying for a baby for 10 years and in the end they give up and just want the pain to stop.

“For those with a severe form of the disease it can be a very hard life.”

For more information and for support from other people with the condition visit www.endometriosis.org.uk