The PCOS Support Thread for Hair

[TeacherTeachMeSomeSense]

Calling all fellow hair-obsessives living with PCOS

The syndrome is something you're asked to control, which means it's often hidden, maintained or not talked about.

I'm newly diagnosed and I'm already put off by how often it's written off as 'not life or death' as the doctors put a box of pills in your hands and push you out the door! The other more serious associated risks means the day-to-day common traits among people with the syndrome isn't researched, you're either 'living with PCOS' or 'suffering with PCOS', e.g. less troubling aspects like hair fall or thinning are poo-pooed by your physcian.

But if you've made it to the hair boards, you'll know hair often feels like everything!!

Forgive me if I'm wrong, but I've combed the boards and while there are lots of threads relating to Polycystic Ovarian Syndrome in 'Health and Fitness' or 'Off Topic', there is not as much in the Hair Care forum only sporadic 'questioning' threads i.e. Saw Palmetto and PCOS etc.

I'm inviting others to check-in and share your stories on how PCOS is a part of your personal 'hair journey', and hopefully this will be a great resource to learn about the syndrome and gain tips! I've checked out the Alopecia support thread and I see lots of sufferers on there, but I think it's high time PCOS gets it's own spotlight...

I hope this will be useful to both newbies and long-time sufferers in terms of finding similarities and common problems, helpful regimens and supplements and success stories that make it all easier!

 

[Ijanei]

I never experienced this or have any "real" knowledge about the disease but I will drop in periodically to show support to you ladies that suffer from this. HHG

 

[reeko43]

I also have been diagnosed with PCOS. I so understand your frustration about hair. I have started to have thinning at the temples and top like male pattern baldness. Thinking about losing my hair has been very depressing. Doctors quickly dismiss me by telling me to just try Rogaine. The major emphasis in treatment for PCOS is infertility, not hair.

As hard as it is to lose weight with PCOS, I have managed to lose 45 pounds. I also run. I find that the better that I take care of my overall health, the more my symptoms are held at bay. I can only hope that I can one day manage my sugar and carb cravings. I think that will yield even better results.

You may be aware of this already, but there is a website, www.soulcysters.com that has information on PCOS and a forum. There is some good information there as well as support from others who know what you are going through. I will definitely be checking in and have subscribed to this thread.

 

[Qualitee]

I have PCOS and my hair started fallen out like crazy last summer. I started taking a multi vit, flax seed and fish oil, vit B complex, chorella, and garlic sup. I noticed my hair isn't shedding as much. I can't wait until I bet this!

 

[TeacherTeachMeSomeSense]

I also have been diagnosed with PCOS. I so understand your frustration about hair. I have started to have thinning at the temples and top like male pattern baldness. Thinking about losing my hair has been very depressing. Doctors quickly dismiss me by telling me to just try Rogaine. The major emphasis in treatment for PCOS is infertility, not hair.

As hard as it is to lose weight with PCOS, I have managed to lose 45 pounds. I also run. I find that the better that I take care of my overall health, the more my symptoms are held at bay. I can only hope that I can one day manage my sugar and carb cravings. I think that will yield even better results.

You may be aware of this already, but there is a website, www.soulcysters.com that has information on PCOS and a forum. There is some good information there as well as support from others who know what you are going through. I will definitely be checking in and have subscribed to this thread.

Thanks for the recommendation! I'm gonna have to check it out. Well done for losing so much weight already! Wow! I've yet to hop on that train too unfortunately erplexed it's all about 'making changes for life' so the doctors aren't keen on talking about short-term ways to curb the effects, such as vitamins etc. They think it's lazy!

I'm hoping with regular exercise, drinking lots of water, 450mg 2x Saw Palmetto and the usual multivitamins/Vit D/Iron I take that over time my hair will eventually 'come back' as my health improves. I've experienced severe thinning of the strands and some bald patches in the scalp over the years. Growth aids like Rogaine and high doses of Biotin definitely help, but my new growth is the same low quality of fine hair, and often sheds or falls very easily with manipulation.

I understand not all people with PCOS have their hair/hair growth affected, so knowing what helps is so hit and miss!

 

[reeko43]

I'm hoping with regular exercise, drinking lots of water, 450mg 2x Saw Palmetto and the usual multivitamins/Vit D/Iron I take that over time my hair will eventually 'come back' as my health improves. I've experienced severe thinning of the strands and some bald patches in the scalp over the years. Growth aids like Rogaine and high doses of Biotin definitely help, but my new growth is the same low quality of fine hair, and often sheds or falls very easily with manipulation.I understand not all people with PCOS have their hair/hair growth affected, so knowing what helps is so hit and miss!

I am so sorry you had to go through this. A woman's hair is her glory. It is hard to come to grips with hair loss. I am transitioning to natural and I am very careful about protective styling and handing my hair. You may be tempted to jump on all the different bandwagons that promise hair growth. However, be careful. More often than not you will be disappointed.

I really do believe that a good exercise and a low sugar/low carb diet regimen are key. I have also heard good things about saw palmetto. I am allergic to Metformin and I can only take the BCP. The website I recommended is great because people discuss many different natural remedies, medications, foods, lifestyle changes, etc. that they have found helpful. The site as a whole is a wealth of information. I have learned so much.

 

[beana]

Ladies what were some of the signs/symptoms that led your doctors to diagnose yolu with PCOS?

Ive had extensive bloodwork done and have an appointment later this week with my endo to go over my results. He said the syndrome is a combination of systemic mishaps that doctors are quick to write off as PCOS. He also said insulin resistence plays a role in pcos.

I have moderate to severe hormonal acne that my dermatologfist believes is caused by pcos. My derm preescribed Spironolactone whch i refused to take because i wanted to make sure that i was testosterone sensitive before starting hormonoal therapy. In addition to being an androgen/testosterone blocker, its a powerdul diuretic, it also increases scalp hair growth. The downside to this medication is that pregnancy should be avoided at all costs as its proven to cause birth defects. Saw palmetto is the natural form of this medicine and this is what i would take if i was diagnosed.

I believe a properly nourished body can rebound from almost anything, so i juice daily with kale, 1/2 a green apple and 1/2 lemon. I also exercise at least 2-4xs a week and i try to stay positive because stress can manifest itself as disease in the body.

 

[Janet']

Ladies,

I just want to show my support to you! As someone dealing with another female issue- endometriosis...I can relate on some level regarding unwanted side effects. Stay strong and positive (even though that can be easier said than done sometimes)...There is strength in numbers so hopefully other ladies will chime in and share their experiences!

 

[TeacherTeachMeSomeSense]

Ladies what were some of the signs/symptoms that led your doctors to diagnose yolu with PCOS?

Ive had extensive bloodwork done and have an appointment later this week with my endo to go over my results. He said the syndrome is a combination of systemic mishaps that doctors are quick to write off as PCOS. He also said insulin resistence plays a role in pcos.

I have moderate to severe hormonal acne that my dermatologfist believes is caused by pcos. My derm preescribed Spironolactone whch i refused to take because i wanted to make sure that i was testosterone sensitive before starting hormonoal therapy. In addition to being an androgen/testosterone blocker, its a powerdul diuretic, it also increases scalp hair growth. The downside to this medication is that pregnancy should be avoided at all costs as its proven to cause birth defects. Saw palmetto is the natural form of this medicine and this is what i would take if i was diagnosed.

I believe a properly nourished body can rebound from almost anything, so i juice daily with kale, 1/2 a green apple and 1/2 lemon. I also exercise at least 2-4xs a week and i try to stay positive because stress can manifest itself as disease in the body.

The problem with PCOS is it's got such a wide number of symptoms it can easily be misdiagnosed, and the medication they offer seems to have a lot of nasty side effects.

I suspected I had it because of:
-stubborn weight gain that's difficult to get off (especially tummy)
-dark facial hairs
- history of very irregular periods
- hair thinning and loss despite good hair practice
-family history of type 2 diabetes and family history of early male pattern balding

If I was you, I wouldn't really go on any medication until you know for sure and get bloodwork done. I literally got an ultrasound and they showed me the cysts on the screen! You need proof. Hopefully, it's not PCOS it could just be stress or something else (my best friend suffers from severe acne when she's stressed so i've seen it happen).

I definitely agree with you about the all-natural route if you get diagnosed! I don't have too many symptoms and I'm really reluctant to go on Birth Control only for my body to become dependent on it , I only will if I have to.

 

[fula97]

Ladies what were some of the signs/symptoms that led your doctors to diagnose yolu with PCOS?

Ive had extensive bloodwork done and have an appointment later this week with my endo to go over my results. He said the syndrome is a combination of systemic mishaps that doctors are quick to write off as PCOS. He also said insulin resistence plays a role in pcos.

.

I had to change drs several times before I found one who finally figured out what was wrong with me. I knew something was going on when I gained 45lbs in 3 months with no change in diet and at a time when I was working out 5 days a week. One doctor had the nerve to suggest that I stop drinking Kool Aid and fried foods :hardslap:I reported him. I also was getting hairs on my chin

It wasn't only the blood tests that confirmed it I also had a vaginal sonogram which confimed I had cysts. I also would go months without having a period.

It's been a long battle with PCOS for the past 10 yrs but its not as bad as some women who have it. I can tweeze the hairs I get on my chin. I've found an excellent derm and have managed to keep the acne under control.

The thinning hair, weight gain have for me been the hardest part of PCOS. The good news is I finally have regular normal periods (had a bout with fibroids as well), my hair has become thicker and the edges are slowly coming back. Now I'm focusing on loosing the weight that I put on over the years

Soulcysters.net can't be recommended enough. It has helped me a lot especially in those early days

 

[fula97]

If I was you, I wouldn't really go on any medication until you know for sure and get bloodwork done. I literally got an ultrasound and they showed me the cysts on the screen! You need proof. Hopefully, it's not PCOS it could just be stress or something else (my best friend suffers from severe acne when she's stressed so i've seen it happen).

I definitely agree with you about the all-natural route if you get diagnosed! I don't have too many symptoms and I'm really reluctant to go on Birth Control only for my body to become dependent on it , I only will if I have to.

I completely agree with this. If you have a dr that only recommends BC find another dr. It only masks the sypmtoms. PCOS can also lead to other things since your hormones are all out of wack

Also make sure they do a full panel and check your calcium and Vit D levels as well as thyroid Most women with PCOS have low levels. I'm lucky I found an endo who uses meds as a last resort

Met never worked for me and the side effects were horrid
Currently I take a high dose calicium Vit D supplement and 50,000IU of Vit D per my dr. Also take Kelp supplements

If you are struggling with weight I would also shy away from drs who recommend lapband/gastric as the solution. I've noticed on the boards a lot of the drs recommend that option. I'm not going to lie its hard losing weight but for me to lose I have to workout 5x a week and keep a low carb diet

 

[TeacherTeachMeSomeSense]

IOne doctor had the nerve to suggest that I stop drinking Kool Aid and fried foods

He's lucky all you did was report him. Boy. I agree, right now all the doctors I've seen are telling me something different, some that I should just be healthy and ignore it till I want to conceive and some begging me to start hormone treatment asap. Not all of them know what they're talking about (case in point ^^^) and I'm taking everything they say with grain of salt.

I'm glad you're having some successful breakthroughs, hopefully as you lose weight you'll see even more improvements!

 

[reeko43]

I have had irregular periods and bad acne since a teen. I had some stomach fat that did not fit with the rest of my slender body. I had consistent high cholesterol leves. I was put on BCP and just told to deal with it. I didn't know about PCOS until about 10 years ago. I was in a doctor's office and read an article about it in O magazine. I went on line and found a study going on at a teaching hospital. I signed up for it. I went under extensive testing and was diagnosed w/ PCOS. I was prescribed Spironolactone and later Metformin. I had horrible side effects. I still take BCP because I would not have a period without it and found out the hard way how dangerous that was for my body. Thankfully I never wanted children. I was told I would have a hard time conceiving.

I am thankful to have a name for my condition. My endocrinologist monitors insulin levels and cholesterol. Weight has been a struggle but consistent exercise keeps me in a healthy range. I have definitely seen a lot of symptoms disappear and I now have healthy cholesterol levels. The hair still remains a problem. I really do feel that when I master my diet, I will see improvement in my hair. I will say, since losing weight, I haven't lost more hair, I just haven't grown it back.

 

[sheanu]

Bump! I was just diagnosed with this earlier this week and am now on Met. It's good to finally have an answer even though it sucks that it's lifelong and may impact us starting a family which we were hoping to do this year. Do we have any pregnancy and/ hair regrowth success stories? I'm scouring the site right now and then plan to move on to soulcysters and pcosdivas.

 

[Daina]

@sheanu, I was diagnosed with PCOS about 18 years ago. My first husband and I were trying to conceive and having difficulty. I spent most of my 20's focused on trying to conceive and that it what the doctors treated. I conceived multiple times but unfortunately all ended in miscarriage. I ended up having ovarian drilling in my late 20's in essence to remove and alleviate the cysts and I conceived 3 months later and gave birth to a son.

I am a thin PCOS sufferer although I tend to hold any weight in my mid-section. Weight loss has never been an issue because prior to turning 40, weight gain was a challenge when not pregnant. I had to lift weights to gain weight and muscle mass. I did struggle with chin hair growth and mustache. I've used Vaniqua and other topical treatments to lessen the growth.

Hair growth was never a problem for me, however as I have gotten older thinning and increased shedding has increased. A good diet, exercise, tons of water and I take a good vitamin, Vit D, Chlorella, Spirulina and MSM. I also use a castor oil mixture for thickness.

Finally I had a surprise pregnancy at 39 and have another son. I was always told I would never get pregnant without assistance yet my baby is here. Hopefully some of this helps and ask any questions. Good luck!

 

[sheanu]

@sheanu, I was diagnosed with PCOS about 18 years ago. My first husband and I were trying to conceive and having difficulty. I spent most of my 20's focused on trying to conceive and that it what the doctors treated. I conceived multiple times but unfortunately all ended in miscarriage. I ended up having ovarian drilling in my late 20's in essence to remove and alleviate the cysts and I conceived 3 months later and gave birth to a son.

I am a thin PCOS sufferer although I tend to hold any weight in my mid-section. Weight loss has never been an issue because prior to turning 40, weight gain was a challenge when not pregnant. I had to lift weights to gain weight and muscle mass. I did struggle with chin hair growth and mustache. I've used Vaniqua and other topical treatments to lessen the growth.

Hair growth was never a problem for me, however as I have gotten older thinning and increased shedding has increased. A good diet, exercise, tons of water and I take a good vitamin, Vit D, Chlorella, Spirulina and MSM. I also use a castor oil mixture for thickness.

Finally I had a surprise pregnancy at 39 and have another son. I was always told I would never get pregnant without assistance yet my baby is here. Hopefully some of this helps and ask any questions. Good luck!

Congratulations! It's good to hear you were able to start a family with this condition. I'm not overweight either although the scale has been creeping up. But my hair has been the absolute worst for years despite good hair practices and a decent diet.

 

[sheanu]

At this point I'm considering just BCing and starting over AGAIN. I've been keeping my hair in braids which I know is making things worse but my hairline was so jacked before I even started braiding that I just wanted to hide it. Now it's worse than ever and the rest of my hair is dry and thinning like crazy too despite taking very good care of my hair in braids. Does anyone have advice on styling a BC with no edges? Lol I feel like it's impossible but after finally finding out the reason for my hair loss I just want to do what I can to help it out the struggle.

 

[Daina]

At this point I'm considering just BCing and starting over AGAIN. I've been keeping my hair in braids which I know is making things worse but my hairline was so jacked before I even started braiding that I just wanted to hide it. Now it's worse than ever and the rest of my hair is dry and thinning like crazy too despite taking very good care of my hair in braids. Does anyone have advice on styling a BC with no edges? Lol I feel like it's impossible but after finally finding out the reason for my hair loss I just want to do what I can to help it out the struggle.

@sheanu, you might want to ask your question under a new thread to get more responses from the whole group not just those of us with PCOS. I've never BC'd so not sure of a style that might be good. But there are plenty of ladies here who have BC'd and suffer from thinning edges that might have some good advice. I pray you find something you like and your hair gets back on the road to health soon!