# Women with PCOS: Symptoms, Stories and Questions



## VictoriaB (Apr 29, 2012)

I was diagnosed with PCOS in early 2012 after visiting with a dermatologist, not what I expected when I made that appointment. I have always had extremely irregular menstrual cycles. I was a late bloomer and didn't get my first menstrual cycle until I was 16, then waited almost 6 months for the next one. My OBGYN at the time assured me that it was common for athletes and young females. I didn't think much of my lack of periods until I was around 19. In adult hood I would only have a period every three to six months. I addressed my concerns with my OBGYN for a second time and he assured me that it was due to college stress and excessive work outs. 

When I turned 22 I was becoming concerned with the amount of adult acne I was continuously having. I made an appointment with a dermatologist thinking that they could possibly help and get me in the right direction. During my first visit I was asked a lot of questions regarding my skin, health history, birth control, and diet. My physician had a hunch something deeper was happening and sent me off with a lengthy list of blood work to have done. A few days later he called me to set up a second appointment. During that appointment he informed me that he suspected PCOS based on my history but felt strongly about it after seeing the results of my blood work. I then followed up with a new OBGYN who confirmed that I had PCOS and I was a "text book" case. She was also concerned that my previous OBGYN never suspected it. 

I'm not sure how my MBTI type (ISTP) has effected any of my issues with PCOS. In the beginning I was pretty upset over it, which seems to be a common thing. After discussing a few courses of action with my OBGYN I decided to not pursue any medications at this time.


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## MaskedNicci (Aug 5, 2014)

SilentButDeadly said:


> *It's good to remember not to compare yourself to women that do not suffer from this syndrome.*


I just felt I needed to quote this, mostly for myself. It's easy to forget sometimes. :frustrating:

Have you had any luck with your suggested lifestyle changes? I started on a multivitamn a couple months ago, and I'm trying to increase seafood in my diet. I've heard mixed reviews on soy (such as if it is soy milk versus tofu or other soy products, etc.).

I've been finding it really hard to choose whole grains over white flour, and to cut out or minimize juice/fruits, especially with the nausea from medication. I'm hoping an endocrinologist will give me something besides medication that can help with that.



Word Dispenser said:


> Yeah, been on all sorts of BC, first for medical reasons, then for personal reasons, lol. Also was on metformin the year I was diagnosed, but it made me feel sick so I quit.


Yeah, the person I was thinking of said they felt _awful_ on BC, but she's since then not seemed to have PCOS symptoms or concerns. So that's why I was curious.


@VictoriaB When I was first diagnosed, it was only on symptoms, and I didn't get much information on it - she just put me on BC and low Metformin (it was below the minimum dosage. I think because she knew I was going abroad for a year). When I changed to my second OBGYN, she was amazed that I hadn't had any ultrasound to check for cysts, and not really an official diagnosis, and was on a med dosage that was doing absolutely nothing. :/

I'm glad your current OBGYN is willing to discuss and work with you on it. I think a lot of our concerns would be much easier to answer if we had more information, particularly in our own individual cases.


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## Jordgubb (Oct 5, 2013)

MaskedNicci said:


> I just felt I needed to quote this, mostly for myself. It's easy to forget sometimes. :frustrating:
> 
> Have you had any luck with your suggested lifestyle changes? I started on a multivitamin a couple months ago, and I'm trying to increase seafood in my diet. I've heard mixed reviews on soy (such as if it is soy milk versus tofu or other soy products, etc.).
> 
> I've been finding it really hard to choose whole grains over white flour, and to cut out or minimize juice/fruits, especially with the nausea from medication. I'm hoping an endocrinologist will give me something besides medication that can help with that.


Yes, I have seen positive from what I suggested. My hair started falling out about three years ago. A stupid doctor told me I didn't have PCOS because I'm thin. So I stopped caring for my PCOS. I started shaving my head a year ago and wearing wigs. (I was going bald.) 

Thats when I found a good endocrinologist. He laughed at the other doctor. Proceeded to tell me that he gets clients that are models with PCOS. He asked me if I want to be a body builder. (Muscle is good for PCOS and we make natural steroids.) lol

I started running five times a week. Watching my diet and taking spiro. (For about four months now.) My hair has filled in by 90%.... I'm just starting to grow it out. 
My last two periods have been 30 days apart and near painless.  I'm very happy with my diet changes. 


With PCOS you got to keep your chin up! Have you tried taking your medication with a yogurt? 
Soy raises hormones, so for PCOS it's a no-no! My aunt had breast cancer and her doctors said not to eat soy for the same reason. 

Sorry for the rambling....


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## MaskedNicci (Aug 5, 2014)

SilentButDeadly said:


> With PCOS you got to keep your chin up! Have you tried taking your medication with a yogurt?
> Soy raises hormones, so for PCOS it's a no-no! My aunt had breast cancer and her doctors said not to eat soy for the same reason.


That's really great that your hair problem was solved. Pretty amazing, actually. :kitteh:

I've tried eating when I take the pills, including yogurt sometimes, but it hasn't helped notably. I was asking about soy because I've heard that tofu versus soy milk versus other soy products produce different affects, so for instance, I know soy itself causes an escalation in hormones and is also removed from one of the diets my OBGYN tried putting me on for PCOS, but tofu was considered different and allowed on those types of diets - I guess from the way it was processed. This may also be something that is somewhat different from each case, due to different hormonal makeups. 

I saw the new OBGYN the other day for the first time. She basically just said, "Well, you're already on the meds that you should be. So just keep doing what you're doing." :dry: I also told her that my previous OBGYN was having me do bloodwork every few months to see if my levels were being managed/where I was at/etc. (It was a huge psychological relief to see the results of our decisions/patience.) But she just said, "We don't really bother with that here." Which means I have no idea if my medicines and side effects are worth it.

But I at least got her to recommend an endocrinologist. Hopefully that will be more of a help. *sigh*

She also mentioned that the spironolactone, which I started taking separately from the BC (some BC has traces of spiro in it) won't remove any hair growth, but will prevent future hair growth of that sort in the problem areas. So laser hair removal or something along those lines would be my best bet to see any relief on that front.


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## Jordgubb (Oct 5, 2013)

MaskedNicci said:


> That's really great that your hair problem was solved. Pretty amazing, actually. :kitteh:
> 
> I've tried eating when I take the pills, including yogurt sometimes, but it hasn't helped notably. I was asking about soy because I've heard that tofu versus soy milk versus other soy products produce different affects, so for instance, I know soy itself causes an escalation in hormones and is also removed from one of the diets my OBGYN tried putting me on for PCOS, but tofu was considered different and allowed on those types of diets - I guess from the way it was processed. This may also be something that is somewhat different from each case, due to different hormonal makeups.
> 
> ...


That is interesting with the soy!

Oh goodness, I don't like your OBGYN. 
My Endo has planned to do blood work twice a year. I agree, it's a relief to see if it's helping. 

My endocrinologist said it takes 1-2 years on spiro to see a a change in body hair. He said it wont go away but that the hairs will return to more of a peach fuzz. He also told me the laser hair removal isn't worth my money. 
Since the hair is a hormonal problem they will just come back if the hormones are out of balance. 
It made sense to me...

Who knows.... Thats just what I was told. 

I hope you get more help from the Endo!


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## SimplyRivers (Sep 5, 2015)

I just recently came back from the gynecologist, and she said it most likely isn't PCOS, but regular hormonal patterns of a teenager. I'm also getting my blood tested, so will see.


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## CristinBattaglia (Jul 2, 2016)

Thank you for sharing ideas.


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## Entropic (Jun 15, 2012)

MaskedNicci said:


> I'm curious about it affecting personality, too. I'm sure it doesn't alter everything, *but having extra testosterone may make you feel compelled to think about things more logically, instead of emotionally, yes?*


No. Testosterone does not alter whether you are emotionally or a more logically driven kind of person. Case in point are all the numerous transwomen out there who have had testosterone as their primary sex hormone for many years but still end up very effeminate once they feel they can be more genuine with themselves and other people. Similarly, there are plenty of cismen out there who are naturally effeminate as well. 

In terms of larger overarching personality, sex hormones seem to play a very minor role. Even the link with aggression is poorly substantiated.



SilentButDeadly said:


> This is common with the raised cocktail of hormones. My understanding is the higher male hormones cause this lovely symptom.


No, this is incorrect or all transmen would develop this phenomenon too and I can assure you that we don't. If there are changes of skin color, it needs to be looked into so book an appointment with your doc. With that said, insulin levels can for instance change the color of your eyes or your skin, so can other liver problems etc. So again, check with your doctor if your body is changing in ways you don't recognize.


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## Jordgubb (Oct 5, 2013)

Entropic said:


> No. Testosterone does not alter whether you are emotionally or a more logically driven kind of person. Case in point are all the numerous transwomen out there who have had testosterone as their primary sex hormone for many years but still end up very effeminate once they feel they can be more genuine with themselves and other people. Similarly, there are plenty of cismen out there who are naturally effeminate as well.
> 
> In terms of larger overarching personality, sex hormones seem to play a very minor role. Even the link with aggression is poorly substantiated.
> 
> ...


Interesting story. I'll tell my doctor you disagree with him.


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## Entropic (Jun 15, 2012)

SilentButDeadly said:


> Interesting story. I'll tell my doctor you disagree with him.


That I disagree with him about what, that high levels of testosterone cause your underarms to go dark? If that were true, it would have to be ridiculously high levels way beyond what's healthy and normal even for males. I find that doubtful for most women who struggle with PCOS.

Most importantly, if that was true, then I think there would be other much more significant changes occurring to the body that are associated with masculinization and they would be extremely notable seeing how high the levels are.


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## Jordgubb (Oct 5, 2013)

Entropic said:


> That I disagree with him about what, that high levels of testosterone causes your underarms to go dark? If that were true, it would have to be ridiculously high levels way beyond what's healthy and normal even for males. I find that doubtful for most women who struggle with PCOS.


You must be bored. 
You can say what you want. I'm not discussing a female issue with a random male. :laughing:


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## Entropic (Jun 15, 2012)

SilentButDeadly said:


> You must be bored.
> You can say what you want. I'm not discussing a female issue with a random male. :laughing:


Except I'm no random male. I urge you to reread what I wrote in my initial post to you:



> No, this is incorrect or all transmen would develop this phenomenon too and I can assure you that *we *don't.


I was originally born with female physiology which is one reason why I have an interest in the subject of PCOS because I was diagnosed with severe levels of endometriosis some years back. That, and my own treatment with testosterone is one reason why I have an interest in human endocrinology and how testosterone affects the female body and in my studies of raising testosterone levels in the female body thus far, I've never run across the statement you offered.

If it's true, it has to be caused by such extreme levels that they are outright unhealthy.


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## Dragheart Luard (May 13, 2013)

The darker skin stuff is usually correlated with insulin resistance, so I would recommend to check it and other blood parameters. It also can appear in the neck so if that's the case then going to the doctor should help.


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## napkineater (Mar 26, 2013)

My doctor told me I didn't even need an ultrasound lol. I've had hormonal issues linked steroid use for cancer treatment and I find that PCOS is one of the hardest things I've ever had to deal with. 

I'm trying everything, I'm on BCP, spironolactone...as of yesterday I adopted a plant-based diet. I'll report back on here if it's working for me. I'm one of those people who has to try something myself before I hear someone say "that's bullshit!". There's so much conflicting nutrition facts that I think most people are skeptical and paralysed by indecision.


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## Subtle Murder (May 19, 2012)

I highly recommend reading *Natural Solutions to PCOS* by Marilyn Glenville. Not even so much for solutions and treatments, but also because she explains the symptoms and gives you insight into how your body functions when affected by PCOS and what it means. None of my doctors have ever given me an explanation as to what PCOS is. I was diagnosed with it, asked to take birth control and Metformin, and that was the extent of it. I took both medications for a while but my weight ballooned. I am now off both of them and looking into treating this issue by focusing on gut health (have been looking at a book called *The Microbiome Diet* by Dr Raphael Kellman, but haven't had a chance to engage with it properly).


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## napkineater (Mar 26, 2013)

Subtle Murder said:


> I highly recommend reading *Natural Solutions to PCOS* by Marilyn Glenville. Not even so much for solutions and treatments, but also because she explains the symptoms and gives you insight into how your body functions when affected by PCOS and what it means. None of my doctors have ever given me an explanation as to what PCOS is. I was diagnosed with it, asked to take birth control and Metformin, and that was the extent of it. I took both medications for a while but my weight ballooned. I am now off both of them and looking into treating this issue by focusing on gut health (have been looking at a book called *The Microbiome Diet* by Dr Raphael Kellman, but haven't had a chance to engage with it properly).


My doctor put me on metformin and I couldn't get out of bed for a week. Turned out I already had hypoglycemia. My blood sugar went dangerously low.

Thank you, I'll check this out.


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## Subtle Murder (May 19, 2012)

napkineater said:


> My doctor put me on metformin and I couldn't get out of bed for a week. Turned out I already had hypoglycemia. My blood sugar went dangerously low.
> 
> Thank you, I'll check this out.


It's a shame your doctor didn't bother checking your sugar levels or doing a hormone test to see whether or not Metformin was a good idea for you. This is also partly why I stopped taking the medication recommended to me. No further tests or investigation was done once they had deduced that I had PCOS. It just felt like they were slapping a band-aid on me. I would personally rather figure out the root cause or make correcting changes to my lifestyle in order to combat the symptoms than to _just_ take the medication. 

I have a sneaking suspicion that my anxiety is linked to my PCOS. Once I manage to get my gut health under control and find the lifestyle changes that suit me, I am hoping that my hormone levels will ease out and that my anxiety will diminish or disappear entirely.


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