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Living with PCOS
       Rachel Hawkes, Chair
Verity ā€“ The PCOS Self Help Group

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




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




Source: Verity - 2008 poll of over 1,750 PCOS women
Treatment options
ā€¢   No one treatment for PCOS
ā€¢   No national guidelines (NICE)
ā€¢   Lifestyle change (diet and exercise)
ā€¢   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
                                                     ā€¢ Armpits, creases of
                                                       skin, nape of neck
                                                           , p
                                                     ā€¢ Velvety feel to the skin
                                                     ā€¢ Ski t
                                                       Skin tags
                                                     ā€¢ More common in teens
                                                     ā€¢ 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
 ā€œExcessive facial
 and / or body hairs
              y
 in a male pattern
 distribution
 distributionā€

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




Source: Verity - 2008 poll of over 1,100 PCOS women
What cysters say...
ā€¢ ā€œI feel so completely unattractive that I
                  p     y
  think Iā€™ll never be happyā€
ā€¢ ā€œI donā€™t feel like a woman, more like a
   I don t             woman
  post-op transvestiteā€
ā€¢ ā€œI have thick black hair like a manā€™s
  beard, I am totally ashamed and cry
  most mornings when I have to run to the
  bathroom before my fiancƩ to shave and
  slap on makeup to hide the stubbleā€
Day to day emotions




Source: Verity - 2008 poll of over 1,100 PCOS women
How can you help?
ā€¢ Be sensitive and understanding
  - Embarrassed, judged, humiliated
ā€¢ Awareness of PCOS
  - Hair may grow back
ā€¢ Encourage patients to try for funded
  treatment
  t    t     t
  - Write supportive letters to GPs
ā€¢ 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 ā€“ The PCOS Self Help Group chair@verity-pcos.org.uk
  • 2. Who is Verity? ā€¢ UK charity for women with PCOS ā€¢ Formed in 1997 and run by volunteers ā€¢ Own and manage PCOS UK ā€¢ Produce information leaflets ā€¢ Publish a twice yearly newsletter ā€¢ Assist locate research participants ā€¢ Run a website and discussion forum ā€¢ Work with media
  • 3. What is PCOS? ā€¢ Affects millions of women ā€¢ Runs in families ā€¢ Leading cause of infertility in women ā€¢ Has long term health risks - Type 2 diabetes - Heart disease - Endometrial cancer ā€¢ Affects quality of life
  • 4. PCOS Symptoms ā€œThief of womanhoodā€ ā€¢ Irregular or complete lack of periods ā€¢ Irregular or no ovulation ā€¢ Unwanted facial and / or body hair ā€¢ Oily skin and acne ā€¢ Male pattern hair loss ā€¢ Depression and mood changes ā€¢ Weight problems
  • 5. Worst PCOS symptom? Source: Verity - 2008 poll of over 3,000 PCOS women
  • 6. Long term health risks ā€¢ Quality of life self esteem, self worth life, esteem - Acne, hair loss, excess hair, alopecia, obesity, depression ā€¢ Type 2 diabetes - Insulin resistance, obesity ā€¢ Endometrial cancer - Lack of periods ā€¢ Heart disease - Obesity
  • 7. Biggest PCOS worries Source: Verity - 2008 poll of over 1,750 PCOS women
  • 8. Treatment options ā€¢ No one treatment for PCOS ā€¢ No national guidelines (NICE) ā€¢ Lifestyle change (diet and exercise) ā€¢ 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 ā€¢ Armpits, creases of skin, nape of neck , p ā€¢ Velvety feel to the skin ā€¢ Ski t Skin tags ā€¢ More common in teens ā€¢ 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 ā€œExcessive facial and / or body hairs y in a male pattern distribution distributionā€ Due to androgen hormones acting on sensitive hair follicles Source: Dr Alison Layton, consultant dermatologist
  • 13. Treatment of hirsutism ā€¢ Weight loss ā€¢ Cosmetic means ā€“ Bleaching ā€¢ Direct hair removal for hirsutism ā€“ Short term effects for days of weeks ā€¢ Shaving, depilatories, plucking, threading, waxing, threading waxing epilators ā€“ Longer lasting effects ā€¢ 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... ā€¢ ā€œI feel so completely unattractive that I p y think Iā€™ll never be happyā€ ā€¢ ā€œI donā€™t feel like a woman, more like a I don t woman post-op transvestiteā€ ā€¢ ā€œI have thick black hair like a manā€™s beard, I am totally ashamed and cry most mornings when I have to run to the bathroom before my fiancĆ© to shave and slap on makeup to hide the stubbleā€
  • 16. Day to day emotions Source: Verity - 2008 poll of over 1,100 PCOS women
  • 17. How can you help? ā€¢ Be sensitive and understanding - Embarrassed, judged, humiliated ā€¢ Awareness of PCOS - Hair may grow back ā€¢ Encourage patients to try for funded treatment t t t - Write supportive letters to GPs ā€¢ 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