Living with PCOSLiving with PCOSRachel Hawkes, Chair

Verity – The PCOS Self Help GroupVerity The PCOS Self Help Group

chair@verity-pcos.org.uk

Who is Verity?Who is Verity?• UK charity for women with PCOS• Formed in 1997 and run by volunteersFormed in 1997 and run by volunteers• Own and manage PCOS UK• Produce information leaflets• Publish a twice yearly newsletter• Publish a twice yearly newsletter• Assist locate research participants• Run a website and discussion forum• Work with media• Work with media

What is PCOS?What is PCOS?• Affects millions of women• Runs in familiesRuns in families• Leading cause of infertility in women• Has long term health risks

- Type 2 diabetes- Type 2 diabetes- Heart disease- Endometrial cancer

• Affects quality of life• Affects quality of life

PCOS SymptomsPCOS Symptoms“Thief of womanhood”“Thief of womanhood”• Irregular or complete lack of periodsIrregular or complete lack of periods• Irregular or no ovulation• Unwanted facial and / or body hair • Oily skin and acne• Oily skin and acne• Male pattern hair loss• Depression and mood changes• Weight problems• Weight problems

Worst PCOS symptom?Worst PCOS symptom?

Source: Verity - 2008 poll of over 3,000 PCOS women

Long term health risksLong term health risks• Quality of life self esteem self worth• Quality of life, self esteem, self worth

- Acne, hair loss, excess hair,alopecia, obesity, depression

• Type 2 diabetes• Type 2 diabetes- Insulin resistance, obesity

• Endometrial cancerLack of periods- Lack of periods

• Heart disease- Obesity

Biggest PCOS worriesBiggest PCOS worries

Source: Verity - 2008 poll of over 1,750 PCOS women

Treatment optionsTreatment options• No one treatment for PCOS• No national guidelines (NICE)No national guidelines (NICE)

• Lifestyle change (diet and exercise)

• Treating individual symptoms- Fertility (e g clomid IVF ovarian drilling)- Fertility (e.g. clomid, IVF, ovarian drilling)

- Excess hair (e.g. Vaniqa, laser, electrolysis)

- Obesity (e.g. Metformin, low GI)

- Alopecia (e g Flutamide)- Alopecia (e.g. Flutamide)

Skin discolourationSkin discolouration• Armpits, creases of

skin, nape of neck, p• Velvety feel to the skin

Ski t• Skin tags• More common in teensMore common in teens• Treatment

- Weight loss- Laser (?)Laser (?)

Source: Dr Alison Layton, consultant dermatologist

Source: Dr Alison Layton, consultant dermatologist

Hair problems & acneHair problems & acne

Hirsutism 66%

Al i 6%Acne 35%

Alopecia 6%

Source: Balen AH. Human Reproduction 1995 10: 2107-2111

HirsutismHirsutism“Excessive facial and / or body hairs yin a male pattern distribution”distribution

Due to androgen hormones acting on hormones acting on sensitive hair follicles follicles

Source: Dr Alison Layton, consultant dermatologist

Treatment of hirsutismTreatment of hirsutism• Weight loss• Weight loss• Cosmetic means

– Bleaching• Direct hair removal for hirsutism• Direct hair removal for hirsutism

– Short term effects for days of weeks• Shaving, depilatories, plucking,

threading waxing epilatorsthreading, waxing, epilators– Longer lasting effects

• Electrolysis and lasersSource: Dr Alison Layton, consultant dermatologist

Common treatmentCommon treatment

Source: Verity - 2008 poll of over 1,100 PCOS women

What cysters say...What cysters say...• “I feel so completely unattractive that I p y

think I’ll never be happy”• “I don’t feel like a woman more like a • I don t feel like a woman, more like a

post-op transvestite”• “I have thick black hair like a man’s

beard, I am totally ashamed and cry beard, I am totally ashamed and cry most mornings when I have to run to the bathroom before my fiancé to shave and bathroom before my fiancé to shave and slap on makeup to hide the stubble”

Day to day emotionsDay to day emotions

Source: Verity - 2008 poll of over 1,100 PCOS women

How can you help?How can you help?• Be sensitive and understandingBe sensitive and understanding

- Embarrassed, judged, humiliated• Awareness of PCOS

- Hair may grow backHair may grow back• Encourage patients to try for funded

t t ttreatment- Write supportive letters to GPsWrite supportive letters to GPs

• Options available to minimise treatments- Lifestyle, Vaniqa etc

Questions?Questions?Website www verity pcos org ukWebsite www.verity-pcos.org.uk

Email chair@verity pcos org ukEmail chair@verity-pcos.org.uk

Blog verity pcos blogspot comBlog verity-pcos.blogspot.com

Twitter twitter com/veritypcosTwitter twitter.com/veritypcos

Facebook facebook com/veritypcosFacebook facebook.com/veritypcos