Olivia's story: Living with polycystic ovary syndrome (PCOS)


"I have a daughter, now approaching 40, who, while she was growing up, was a slim, athletic shape and loved gymnastics, swimming and horse riding. She had always wanted to be a vet, and so as a bright, single-minded young woman, she started her veterinary training at Cambridge.

When she came home at the end of her second year, however, I hardly recognised her! She was overweight and sluggish, even though she had joined the riding and scuba diving clubs. She had acne and greasy hair, as well as painful, very heavy, very irregular periods which confined her to bed for a few days each time they occurred. She said this had all developed over several months, even though her diet or lifestyle had not changed.

I took her to see a skin specialist, who prescribed various tablets, and creams, but these didn't really do much to help the situation. Her doctor sent her to a dietitian who said she needed to lose weight and stop eating bread and junk food - neither of which were on her shopping list.

After she graduated, she lived in the north of England for two years, then moved south to another practice. While she was there, she was unwell, feeling tired, cold, listless, no energy, short-tempered, and depressed, (and, as I have an underactive thyroid condition which tends to run in families, I thought that she was experiencing the same problem). We checked her blood pressure, heart rate and body temperature - all of which were low. She went to the doctor and happened to see a locum, who, when given the list of her symptoms, said she thought the problem was polycystic ovary syndrome (PCOS). I had never heard of it, but my daughter said she knew cows could have it!

Several visits to her doctor finally managed to get a referral to a gynaecologist, and a scan confirmed the presence of the typical 'string of pearls' cysts on the ovaries. She was prescribed Dianette®, to regulate her erratic periods, and Roaccutane® for the acne. The Dianette® was stopped when she reached 35 as there "was a risk of heart disease for users of the drug". The fact that she was very overweight was ignored.

Her thyroid readings are at the bottom of the 'normal' range, and, whereas in cats and dogs, I'm told, thyroid treatment is closely tailored to the animal's specific TSH, T3 & T4 levels, and symptoms - in humans, there is no treatment at all if the clinical readings are 'normal', in spite of all the other symptoms. There is a school of thought which suggests prescribing a small amount of levothyroxine would help the situation, but her doctor says 'it is more than his job is worth', so she has to learn to live with it. Surely being very overweight is a more serious long-term problem.

Now, ten years since the initial diagnosis, in spite of supposedly being monitored by her doctor every six months (which does not happen), she is very overweight, has low self-esteem, a stressful job, and no end in sight to her suffering. She has been prescribed metformin to help with the weight problem, as yet another symptom is insulin resistance, which could end up with her being diagnosed with type 2 diabetesheart disease and strokes.

The incidence of PCOS, together with its wide variety of symptoms, seems to be rising, with about 10% of young women being affected, mostly not being diagnosed until they have difficulty conceiving in their late twenties and thirties.

In my experience, many GPs have had no guidance on treatment options nor been made aware of numbers of patients with the condition and what symptoms to look for. There is no cure. All that can be done is to manage the varied symptoms according to their incidence.

Sometimes, after a woman has had a baby, the symptoms subside and seem to disappear. In my daughter's case, with her workload and long hours, there is not even a boyfriend on the horizon, let alone marriage and a family, so not much hope there.

I believe there should be a more 'joined-up', concentrated effort to find out why it occurs, why removing the cysts is 'not an option', and to find a definite treatment to help relieve the distressing condition which blights the lives of these young women.

At the very least, the GPs should be made aware of the incidence of this condition, and what to look for in their young female patients. If the condition affected men, I'm sure doctors would have tried long before now!

I hope by sharing our story, we can help others to become more aware about the symptoms of PCOS and help those affected to get diagnosed and treated as early as possible."

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