KatCarney

After 15 years, I've not given up hope of having the baby I long for.

By JILL PALMER.
1,142 words
29 August 2002
Mirror
34,
English
(c) 2002 Mirror Group Ltd

As a teenager, Rachel suffered six-week-long periods, acne and weight gain - but it took until she was 30 to diagnose her problem, reports JILL PALMER


RACHEL Rose had classic polycystic ovary syndrome symptoms as a teenager.

Her periods were irregular, heavy or non-existent and she suffered from acne, excess hair growth and weight gain.

But it wasn't until she was nearly 30 that the syndrome was diagnosed and she was offered any form of treatment.

One in 10 women suffers from the condition, which is one of the most common causes of infertility, yet is frequently misunderstood and misdiagnosed.

And although the symptoms can be treated, there is no cure.

"I had problems with my menstrual cycle from the start," says Rachel, now 32, from Portsmouth, Hants.

"I would have a heavy period that lasted for six weeks, which was very debilitating, and then nothing for six months.

"I suffered awful excess facial hair and was always overweight, no matter how much exercise I did or whichever diet I tried. I used to get teased by the boys at school. It was very distressing.

"When I was 15, the GP suggested I took the contraceptive pill. He didn't do any tests or even try to find out why I was having such problems.

"But although the Pill regulated my periods, I put on even more weight and started to suffer migraines."

Rachel's first hope of relief came when she started training to be a nurse at 23.

While working on a health promotion project reducing teenage pregnancies, she heard about contraceptive implant Norplant.

The progesterone-only implant - which has since been discontinued because of adverse side-effects - had an amazingly beneficial effect.

Her periods became regular, her acne and excess hair disappeared and she lost weight.

"I had the implant from 1993 to 1997 and the difference was miraculous," says Rachel.

"That's when I met Phil, whom I subsequently married. We decided we would like to start a family, so I had the Norplant removed.

"But although fertility is supposed to return to normal quickly, my periods did not start again.

"We were trying to conceive and each month when I did not have a period I thought maybe I was pregnant. I was becoming obsessed, taking pregnancy tests twice a week.

"Meanwhile, all the other symptoms returned. I was hairy again and putting on weight."

In desperation after five months, Rachel went to her local family planning clinic where she was given a blood test which finally showed she had polycystic ovary syndrome.

It was the first time any medic had shown interest in the cause of her problem. But her hopes were not lifted for long. She was referred to a gynaecologist who simply told her to lose weight.

"I was very disillusioned and hurt," says Rachel. "I was 14 stone at the time and a size 16. I know I was overweight but not excessively and I had been trying to lose weight ever since I had the Norplant removed."

It was thanks to a chance conversation, while working as an agency theatre nurse in Basingstoke, that she finally found the help she needed.

"I was chatting to one of the other theatre sisters about having children and I broke down and told her my problems," says Rachel.

"Amazingly, there was a consultant at the hospital who had a particular interest in infertility and polycystic ovary syndrome.

"He agreed to see me if my GP referred me." A scan and a blood test at North Hampshire Hospital in Basingstoke confirmed that Rachel had PCOS and was also insulin-resistant - conditions that are commonly linked.

"The scan showed so many cysts on my ovaries that it was impossible to count them," says Rachel.

"It was very depressing but, at last, my condition was being taken seriously and I was getting help."

Rachel took part in a trial of Clomid, which stimulates ovulation, and Metformin, an insulin-sensitising drug, but without success.

Scans showed she still wasn't ovulating and there was no reduction in the number of cysts.

In September, she underwent a laporoscopic ovarian diathermy - an operation in which an electrical current is used to destroy cells causing the hormonal imbalance.

She still failed to become pregnant and is now undergoing another course of Clomid and Metformin. Her weight is stablising and her hormone levels normalising. "The next stage is injections and eventually IVF," says Rachel.

"But Phil and I have decided not to go down that path due to the expense and stress it would cause.

"I suspected it wouldn't be easy conceiving but I didn't realise just how difficult. It puts an awful lot of pressure on a relationship. But I try to be positive.

"My symptoms are improving and I now appear to have a regular cycle, even if it is slightly longer than most women's. I haven't given up hope yet." Polycystic ovarian syndrome is caused by an imbalance in the hormones that control the menstrual cycle.

Progesterone levels tend to be below normal and oestrogen and androgen (male sex hormone) levels above.

Symptoms include irregular or non-existent periods, facial or body hair, acne, oily skin, weight gain, which is difficult to lose, miscarriage, difficulty in conceiving and infertility.

Gynaecologist Lisa Webber, of Imperial College London, explains: "There is no one treatment. Periods can be regulated with any oral contraceptive pill and women who are trying to conceive can often be helped with ovulation stimulation drugs, such as Clomid.

"The unwanted hair growth and acne can be helped with anti-androgen drugs and sometimes cosmetically.

"It is very difficult for sufferers to lose weight. This is because they have higher than normal insulin levels, which prevent them from burning off calories and these turn to fat. Long-term problems include a higher risk of diabetes, cardiovascular disease and endometrial cancer.

"We are involved in two major studies into PCOS.

"One is looking at the genetics, as it is probably inherited, and the other at the function of the ovary as we believe there is a fundamental difference in the ovaries of women with this condition."

- WellBeing, the health charity for women and children, funds research into PCOS and has just produced a free booklet, sponsored by Boots. Write to WellBeing, Royal College of Obstetricians and Gynaecologists, 27 Sussex Place, Regent's Park, London NW1 4SP. Tel 020 7772 6400 or visit www.wellbeing.org.uk

- Verity, a PCOS self-help group, is at 52-54 Featherstone Street, London EC1Y 8RT (enclose an SAE). www.verity-pcos.org.uk

- For details of the research into the genetics of PCOS, call Imperial College on 020 7886 6740.

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