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Living with PCOS
       Rachel Hawkes, Chair
Verity – The PCOS Self Help Group

    chair@verity-pcos.org.uk
Who is Verity?
•   UK charity for women with PCOS
•   Formed in 1997 and run by volunteers
•   Own and manage PCOS UK
•   Produce information leaflets
•   Publish a twice yearly newsletter
•   Assist locate research participants
•   Run a website and discussion forum
•   Work with media
What is PCOS?
• Affects millions of women
• Runs in families
• Leading cause of infertility in women
• Has long term health risks
     - Type 2 diabetes
     - Heart disease
     - Endometrial cancer
• Affects quality of life
PCOS Symptoms
“Thief of womanhood”
•   Irregular or complete lack of periods
•   Irregular or no ovulation
•   Unwanted facial and / or body hair
•   Oily skin and acne
•   Male pattern hair loss
•   Depression and mood changes
•   Weight problems
Worst PCOS symptom?




Source: Verity - 2008 poll of over 3,000 PCOS women
Long term health risks
• Quality of life self esteem, self worth
              life,    esteem
  - Acne, hair loss, excess hair,
    alopecia, obesity, depression
• Type 2 diabetes
  - Insulin resistance, obesity
• Endometrial cancer
  - Lack of periods
• Heart disease
  - Obesity
Biggest PCOS worries




Source: Verity - 2008 poll of over 1,750 PCOS women
Treatment options
•   No one treatment for PCOS
•   No national guidelines (NICE)
•   Lifestyle change (diet and exercise)
•   Treating individual symptoms
    - Fertility (e g clomid, IVF ovarian drilling)
                (e.g. clomid IVF,
    - Excess hair (e.g. Vaniqa, laser, electrolysis)
    - Obesity (e.g. Metformin, low GI)
    - Alopecia (e g Flutamide)
               (e.g.
Skin discolouration
                                                     • Armpits, creases of
                                                       skin, nape of neck
                                                           , p
                                                     • Velvety feel to the skin
                                                     • Ski t
                                                       Skin tags
                                                     • More common in teens
                                                     • Treatment
                                                       - Weight loss
                                                       - Laser (?)
Source: Dr Alison Layton, consultant dermatologist
Source: Dr Alison Layton, consultant dermatologist
Hair problems & acne



       Hirsutism 66%


                                                             Alopecia 6%
                                                             Al    i
                                                  Acne 35%


Source: Balen AH. Human Reproduction 1995 10: 2107-2111
Hirsutism
 “Excessive facial
 and / or body hairs
              y
 in a male pattern
 distribution
 distribution”

 Due to androgen
 hormones acting on
 sensitive hair
 follicles
Source: Dr Alison Layton, consultant dermatologist
Treatment of hirsutism
   • Weight loss
   • Cosmetic means
     – Bleaching
   • Direct hair removal for hirsutism
     – Short term effects for days of weeks
        • Shaving, depilatories, plucking,
          threading, waxing,
          threading waxing epilators
     – Longer lasting effects
        • Electrolysis and lasers
Source: Dr Alison Layton, consultant dermatologist
Common treatment




Source: Verity - 2008 poll of over 1,100 PCOS women
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             woman
  post-op transvestite”
• “I have thick black hair like a man’s
  beard, I am totally ashamed and cry
  most mornings when I have to run to the
  bathroom before my fiancé to shave and
  slap on makeup to hide the stubble”
Day to day emotions




Source: Verity - 2008 poll of over 1,100 PCOS women
How can you help?
• Be sensitive and understanding
  - Embarrassed, judged, humiliated
• Awareness of PCOS
  - Hair may grow back
• Encourage patients to try for funded
  treatment
  t    t     t
  - Write supportive letters to GPs
• Options available to minimise treatments
  - Lifestyle, Vaniqa etc
Questions?
Website    www.verity-pcos.org.uk
           www verity pcos org uk

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

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

Twitter    twitter.com/veritypcos
           twitter com/veritypcos

Facebook   facebook.com/veritypcos
           facebook com/veritypcos

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Living with polycystic ovary syndrome (PCOS)

  • 1. Living with PCOS Rachel Hawkes, Chair Verity – The PCOS Self Help Group chair@verity-pcos.org.uk
  • 2. Who is Verity? • UK charity for women with PCOS • Formed in 1997 and run by volunteers • Own and manage PCOS UK • Produce information leaflets • Publish a twice yearly newsletter • Assist locate research participants • Run a website and discussion forum • Work with media
  • 3. What is PCOS? • Affects millions of women • Runs in families • Leading cause of infertility in women • Has long term health risks - Type 2 diabetes - Heart disease - Endometrial cancer • Affects quality of life
  • 4. PCOS Symptoms “Thief of womanhood” • Irregular or complete lack of periods • Irregular or no ovulation • Unwanted facial and / or body hair • Oily skin and acne • Male pattern hair loss • Depression and mood changes • Weight problems
  • 5. Worst PCOS symptom? Source: Verity - 2008 poll of over 3,000 PCOS women
  • 6. Long term health risks • Quality of life self esteem, self worth life, esteem - Acne, hair loss, excess hair, alopecia, obesity, depression • Type 2 diabetes - Insulin resistance, obesity • Endometrial cancer - Lack of periods • Heart disease - Obesity
  • 7. Biggest PCOS worries Source: Verity - 2008 poll of over 1,750 PCOS women
  • 8. Treatment options • No one treatment for PCOS • No national guidelines (NICE) • Lifestyle change (diet and exercise) • Treating individual symptoms - Fertility (e g clomid, IVF ovarian drilling) (e.g. clomid IVF, - Excess hair (e.g. Vaniqa, laser, electrolysis) - Obesity (e.g. Metformin, low GI) - Alopecia (e g Flutamide) (e.g.
  • 9. Skin discolouration • Armpits, creases of skin, nape of neck , p • Velvety feel to the skin • Ski t Skin tags • More common in teens • Treatment - Weight loss - Laser (?) Source: Dr Alison Layton, consultant dermatologist
  • 10. Source: Dr Alison Layton, consultant dermatologist
  • 11. Hair problems & acne Hirsutism 66% Alopecia 6% Al i Acne 35% Source: Balen AH. Human Reproduction 1995 10: 2107-2111
  • 12. Hirsutism “Excessive facial and / or body hairs y in a male pattern distribution distribution” Due to androgen hormones acting on sensitive hair follicles Source: Dr Alison Layton, consultant dermatologist
  • 13. Treatment of hirsutism • Weight loss • Cosmetic means – Bleaching • Direct hair removal for hirsutism – Short term effects for days of weeks • Shaving, depilatories, plucking, threading, waxing, threading waxing epilators – Longer lasting effects • Electrolysis and lasers Source: Dr Alison Layton, consultant dermatologist
  • 14. Common treatment Source: Verity - 2008 poll of over 1,100 PCOS women
  • 15. 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 woman post-op transvestite” • “I have thick black hair like a man’s beard, I am totally ashamed and cry most mornings when I have to run to the bathroom before my fiancé to shave and slap on makeup to hide the stubble”
  • 16. Day to day emotions Source: Verity - 2008 poll of over 1,100 PCOS women
  • 17. How can you help? • Be sensitive and understanding - Embarrassed, judged, humiliated • Awareness of PCOS - Hair may grow back • Encourage patients to try for funded treatment t t t - Write supportive letters to GPs • Options available to minimise treatments - Lifestyle, Vaniqa etc
  • 18. Questions? Website www.verity-pcos.org.uk www verity pcos org uk Email chair@verity-pcos.org.uk chair@verity pcos org uk Blog verity-pcos.blogspot.com verity pcos blogspot com Twitter twitter.com/veritypcos twitter com/veritypcos Facebook facebook.com/veritypcos facebook com/veritypcos