Anybody out there have PCOS?

[Junkie]

I recently found out that I probably have Polycystic Ovarian Syndrome.

I don't know how long I've possibly had it....but my family doctor seems to think I've shown symptoms basically since I hit puberty (weight gain, extremely bad acne, some facial or body hair, etc).

My cycles were pretty normal up until I was about 19. It took me around 6 months to get pregnant (which can be all timing, but kinda weird considering I was young and relatively fit). So that was probably the first indication.

After my daugther, I was ovulating again within 4 weeks of giving birth. Things went somewhat hay-wire after this. I started taking Depo-Provera and stayed on that for about a year. I went off (after having periods that sometimes lasted up to 2 weeks long - even almost a year after on the contraceptive). Normally, after atleast 8-12 months, your period lessons drastically, if not completely. Mine didn't. It was then I started breaking out like crazy - I went on Accutane during this time.

I stopped the Depo and went on Ortho Tri-cyclen 21's (not the low's). The Accutane stopped after only 3 months. The birth control pill stopped after 3-4 months.

I've been off every contraceptive. Truth be told, I'm scared to try anything else. My doctor prescribed Sprinolactone and Minocycline both for the acne and the hormones. I tested negative for any thyroid conditions and my male hormones aren't high.

The doctor seems to think its PCOS....yet I haven't gotten any formal testing, other than a few ultrasounds (which detected cysts on both ovaries). I've missed my period several times over the course of this past year. My acne has also flared back up including pustules that are infected and hurt my face....same with some cyctic. Most of it is along my jawline, but recently, its also invaded my forehead and cheeks too.

The most recent is now - two months to be exact.

I've tried upping the physical exercise - because apparently that can make them "pop"....ew, I know. The pains I get on either side of my abdomen are intense. I break out like crazy if I forget to take my pills. I'm constantly hot, uncomfortable and generally more irritable than normal when it comes to my actual cycle days (though I don't menstruate).

Oh and the cincher? That fullness you feel when you're on your period? I always have that the 2 weeks when I'm supposed to ovulate and again the entire week my period is due....yet nothing happens.

Brutal.

Anyone out there with similar symptoms and what they did/do to alleviate the pain or stress?

I'd love to lose the weight.....but I've found that next to starving myself (and restricting myself to 1000-1400 calories a day) is the only thing that ever worked. But it was only for about a month before I caved and had to frikken devour EVERYTHING.

Its damn near impossible with PCOS....it just feels 1000x more hard and uncomfortable to control yourself.

I'd love to gain that support and will power but just need a good swift kick in the ass!

 

[kaliraksha]

I have PCOS and I am having intermittent results with varying treatments <--- story of my life with PCOS!

I feel you on the feeling like you do everything right or even more than what "normal" people do and yet your results are so lack luster. The hardest thing I did was go on a very strict nutritionist overseen 1000 calorie diet and even that didn't get me better results than other treatments. I say treatments because no matter what I read it all points to the only thing that can kind of reverse PCOS is losing weight because it helps regulate our insulin and hence the way our body treats our input. Have you given metformin or other glucophage type medications a shot?

I haven't personally, but know people who have and have had great results.

What has worked for me is a low glycemic index diet and generally just only eating anything that comes from the outside aisles of the super market- produce, nuts, meat, dairy. If I can't make it from scratch I don't eat it.

It's been more than a year now that I have been ovulating regularly and this is huge for me. I have never been regular and would sometimes go 6+ month without one and now it's like clock work and I'm not on any medication. I am really surprised by what diet can do.

My doctor really wants me to give regular working out a shot. This is definitely where I need a lot of encouragement. I really hate working out... even though I know how much better I feel after. I've never worked out regularly for more than a few months. When I do it's something a little more chill and not as intense as I should be striving for. It's my next health goal right now.

I hate it when my ovaries hurt...I've heard that the popping of cyst naturally is pretty painful and can send you to the emergency room, if they hurt you should consider having them removed surgically. It's an outpatient procedure and seems relatively safe and an easy recovery.

It's strange how little is actually known about PCOS and that there is no sure fire way to diagnose or treat it. Bleh, I'm keeping my fingers crossed for future medicine development!

 

[HeatherNicole]

And I have finally found the thread. Thanks for suggesting itkaliraksha!
Ok so I made my GYN appointment and will be seeing my Dr on Wednesday for my first check up and to ask questions in regards to whether or not I have this. I posted in another section of the forum that I have a family history of PCOS, but have also been experiencing what seems to be symptoms: facial hair, unable to lose weight, the skin issues, and pain.
After I posted on the other forum my symptoms seemed to go away, and then I had my period, it was almost 6 days when normally its only four, and then I began having pain this week. I'm scared, but somewhat relieved because at least I'll know what this is and how to manage it.
thanks girls and all the love and support to you.

 

[KrissyJ]

I have PCOS. I've had it for quite a few years, but finally got my doctor to give me a firm diagnosis 4 years ago. I kept telling her I was sure I had it but she kept putting it off. She finally listened, did the "right" tests on me and agreed that I do have it.

She referred me to an endocrincologist and she put me on Metformin/Glucophage. It has made a huge difference. I have regular periods now. I'm ovulating regularly. My acne has cleared up. I've actually lost some weight.

Since my diagnosis, I've lost about 55 lbs. It hasn't been easy though. I still have a fair amount to lose but I'm getting there.

I don't actually have the cysts on my ovaries. I do have ovulation pain each month which is how I know I'm actually ovulating.

PCOS is a frustrating and painful "disorder" to have. I feel for all my fellow females who have it.

 

[VAQTPIE]

I have PCOS also. I was diagnosed in 2005. I have an abnormally high testosterone level and cysts on both ovaries confirmed by ultrasound. My original problem was that I would go for several months without having a period and then I would have continuous bleeding (heavy at times) for several months. I would constantly go back and forth.

I'm still struggling with this. My reproductive endocrinologist started me on Metformin in 2008 and I took it for several months, but it made my stomach very upset. I cut the dosage in half (on physician advice) and I still had stomach problems. I was then instructed to see a nutritionist. However, I work in healthcare, but my insurance will not pay for me to see a nutritionist unless I've been diagnosed with diabetes....that's BS! After this, I became extremely frustrated with my doctors and I haven't been back. I'm just dealing with it on my own---which is not what I would recommend to anyone.

I also have high blood pressure and a family history of blood clots, so birth control pills are not really an option. I also used to take Provera to help with the heavy bleeding and as an attempt to regulate my cycle, but that didn't work either.

I start Weight Watchers (again) tomorrow. This time I'm doing the at work program and have a co-worker that is doing it with me. I really need to push myself and make the lifestyle change. I've had success with the program in the past and lost about 25 lbs. But, I didn't stick to it and those 25 lbs found me and brought some friends along with them...LOL. I know from past experience that weight loss is the only thing that helps regulate my cycle and ovulation. I'm not trying to get pregnant anytime soon, but I'm almost 28 and if I want to have children in the next several years...I need to start making the changes now.

Sorry for the long post. I'm just glad that there are other women here that share this syndrome with me and that also have an addiction to makeup.

 

[HeatherNicole]

I think we've got ourselves a support group going! I'm sitting here pouring through the latest post and finding encouragement for my gyno appointment tomorrow. VAQTpie I know you will do well in losing the weight. I'm on the same journey, not with weight watchers, but in wanting to get my weight managed to get better.
I got your back for any encouragement.

 

[redecouverte]

I also have PCOS.I've always had it and was diagnosed 5 years ago. I've never had a regular period and I've been on the pill for more than 10 years now...
I am lucky if I get my monthly visitor twice a year and even w/ the pill..nothing
It's frustrating but most days I don't think about it.
Weight loss is also very frustrating....but I try to stay positive

 

[Redaddict]

Hi guys!
I am a fellow PCOS girl and I just wanted to say, please do a bit of research on this yourselves (an awful lot of doctors know NOTHING about it and can give terrible, not to mention, completely wrong, advice. For example, I was told when I was about 22 that I didn't ovulate. I was devastated and cried for weeks... um, I now have two kids... my son was conceived on honeymoon and my daughter was...well, I don't even know how she happened

so the doctor that told me I wouldn't have kids was talking out of his ass)
Anyway, often the symptoms are treated with the pill and so on, rather than looking at the cause. The cause is insulin resistance and can be treated with diet (low GI, cutting back on carbs) or Metformin. Simple dieting and restricting of calories will not help.
Anyway, my baby girl (yes, the miraculously conceived one!) is now crying so I better go. I hope this information helped a bit. I feel your pain but once you begin to understand it, it becomes less confusing and frightening.

 

[SerenityRaine]

I've been diagnosed for over 4 years but have had it at least since I was 18. My periods for the most part are regular. Only a handful of times have I skipped a month. Painful periods. Acne. Bleh. My weight has been up and down...but I notice less symptoms when my weight is down.

I found this message board extremely helpful: www.soulcysters.net/ www.soulcysters.com

 

[xFlossy]

I have it too! I suspected I had it when I heard that Panacea81 had it and looked on Google as to what it was. It all seemed to "click" and I had that lightbulb moment. I didn't think about it for ages until I had a heavy Period for 6 weeks straight. I had blood tests and it was probable I had it. I was sposed to get an ultrasound but I had to move by then and I guess I just forgot about it. I was put on Metformin and it really didn't do anything for me except make me feel nauseous. I was also put on the "Estelle" pill and has evened out my hormones slightly. I get the "Man-Hairs" still but not as bad.

I never really got acne I would have the very occasional breakout but I find it really hard to lose weight.

Does anyone have the problem of putting most of their weight on their tummy? It's so frustrating going clothes shopping! I always have to get huge sizes to go around my waist and have the crotch hang between my knees!

 

[redecouverte]

Quote:

Originally Posted by xFlossy Does anyone have the problem of putting most of their weight on their tummy? It's so frustrating going clothes shopping! I always have to get huge sizes to go around my waist and have the crotch hang between my knees!

most of my weight gain is in the midsection/ tummy and so hard to lose

this book helped me a lot to understand better the syndromePcos: Polycystic Ovary Syndrome : The Hidden Epidemic by Samuel S., Ph.D. Thatcher

there is also a useful website soulcysters.com

 

[Addicted2Shadow]

I was told a couple of weeks ago that I have it. I decided to do a low carb diet 20-25 carbs a day total. I feel a lot better, just a bit sleepy. I've already started to lose weight and it's only been a week and a day. ( I also usually have a really hard time losing weight)

 

[KrissyJ]

I had to fight my doctor tooth and nail b/c she wanted to put me on birth control to help ease the symptoms. My husband and I have been married for 15 years (this fall) and we are desperate to have a child. I'm not going to go on birth control. Thankfully, my endocrinologist understands and understood and put me on the Met instead. As I said in my previous post, Met has been a god-send for me. I'm on 2000 mg a day. It made me really sick when I first started taking it (even though I was eased into it) but I dealt with it. I also have IBS so I'm used to dealing with tummy and intestinal issues, lol!

VAQTPIE, I also had high testosterone levels before I started getting treatment. Facial hair is a pain in the ass! I have to spend quality time every day with my tweezers and my magnifying mirror for the damn chin whiskers that pop up like mad. I also have to wax my upper lip area 2 times a month.

 

[Addicted2Shadow]

Quote:

Originally Posted by Junkie I recently found out that I probably have Polycystic Ovarian Syndrome. I don't know how long I've possibly had it....but my family doctor seems to think I've shown symptoms basically since I hit puberty (weight gain, extremely bad acne, some facial or body hair, etc). My cycles were pretty normal up until I was about 19. It took me around 6 months to get pregnant (which can be all timing, but kinda weird considering I was young and relatively fit). So that was probably the first indication. After my daugther, I was ovulating again within 4 weeks of giving birth. Things went somewhat hay-wire after this. I started taking Depo-Provera and stayed on that for about a year. I went off (after having periods that sometimes lasted up to 2 weeks long - even almost a year after on the contraceptive). Normally, after atleast 8-12 months, your period lessons drastically, if not completely. Mine didn't. It was then I started breaking out like crazy - I went on Accutane during this time. I stopped the Depo and went on Ortho Tri-cyclen 21's (not the low's). The Accutane stopped after only 3 months. The birth control pill stopped after 3-4 months. I've been off every contraceptive. Truth be told, I'm scared to try anything else. My doctor prescribed Sprinolactone and Minocycline both for the acne and the hormones. I tested negative for any thyroid conditions and my male hormones aren't high. The doctor seems to think its PCOS....yet I haven't gotten any formal testing, other than a few ultrasounds (which detected cysts on both ovaries). I've missed my period several times over the course of this past year. My acne has also flared back up including pustules that are infected and hurt my face....same with some cyctic. Most of it is along my jawline, but recently, its also invaded my forehead and cheeks too. The most recent is now - two months to be exact. I've tried upping the physical exercise - because apparently that can make them "pop"....ew, I know. The pains I get on either side of my abdomen are intense. I break out like crazy if I forget to take my pills. I'm constantly hot, uncomfortable and generally more irritable than normal when it comes to my actual cycle days (though I don't menstruate). Oh and the cincher? That fullness you feel when you're on your period? I always have that the 2 weeks when I'm supposed to ovulate and again the entire week my period is due....yet nothing happens. Brutal. Anyone out there with similar symptoms and what they did/do to alleviate the pain or stress? I'd love to lose the weight.....but I've found that next to starving myself (and restricting myself to 1000-1400 calories a day) is the only thing that ever worked. But it was only for about a month before I caved and had to frikken devour EVERYTHING. Its damn near impossible with PCOS....it just feels 1000x more hard and uncomfortable to control yourself. I'd love to gain that support and will power but just need a good swift kick in the ass!

Try Low carb... I've been dieting forever and I always cave too. It's hard but it doesn't leave you starving like low fat and or low calorie does. Idk... Just saying my stomach doesn't hurt 24/7 like it did and I'm already starting to get into clothes that didn't fit me. Research it. Remember drink plenty of water and do low carb not NO carb. Hope this helps

 

[xFlossy]

Quote:

Originally Posted by redecouverte most of my weight gain is in the midsection/ tummy and so hard to lose this book helped me a lot to understand better the syndromePcos: Polycystic Ovary Syndrome : The Hidden Epidemic by Samuel S., Ph.D. Thatcher there is also a useful website soulcysters.com

Thanks for that. I might see if my local library has it.

Does anyone else sweat more than normal? I suspect I also have Hyperthyroidism so that maybe it aswell. I am also on medication for severe depression and thats been known to hinder weightloss.

 

[martiangurll]

Quote:

Originally Posted by Addicted2Shadow I was told a couple of weeks ago that I have it. I decided to do a low carb diet 20-25 carbs a day total. I feel a lot better, just a bit sleepy. I've already started to lose weight and it's only been a week and a day. ( I also usually have a really hard time losing weight)

2nd this. I don't have PCOS but a lot of my menstrual and hormonal symptoms cleared up when I cut the carbs. Plus, I lost weight!

 

[KrissyJ]

Quote:

Originally Posted by xFlossy Thanks for that. I might see if my local library has it. Does anyone else sweat more than normal? I suspect I also have Hyperthyroidism so that maybe it aswell. I am also on medication for severe depression and thats been known to hinder weightloss.

I do get hot extremely easily and sweat a lot. I never thought about it maybe being tied to PCOS. Interesting.

I'm also on depression meds and didn't think about the weightloss issues with that.

You've opened my eyes to a few things. Thanks!!

 

[HeatherNicole]

I sweat alot too. I just got back from seeing my gyno and she's 80% sure i have it. I go back in the am to do a urine and blood test, in about a week i go back and we'll go from there. Because of im young and unmarried she suggested i do birth control for the facial hair as opposed to the cream. Any thoughts?
I mean i wanted kids eventually, but not now.

 

[kaliraksha]

I went the birth control method for a while... until my insurance decided that birth control isn't medically necessary for me. Lol, still fighting that one. It worked pretty well for me... I wasn't as regular (surprisingly) as the diet changes helped me get though. I didn't see a huge difference, but I felt fine on it and I lost a little weight initially. It's probably worth a shot, I was put on Yaz.

Also, this is the lit I've found useful over the years:

http://www.amazon.com/Low-Diet-Revol...1575715&sr=1-1
http://www.amazon.com/Patients-Guide...d_bxgy_b_img_b
http://www.amazon.com/Insulin-Resist...d_bxgy_b_img_c
http://www.amazon.com/Savvy-Womans-G...ref=pd_sim_b_4

 

[xFlossy]

Quote:

Originally Posted by KrissyJ I do get hot extremely easily and sweat a lot. I never thought about it maybe being tied to PCOS. Interesting. I'm also on depression meds and didn't think about the weightloss issues with that. You've opened my eyes to a few things. Thanks!!

Oh wow! I thought I might have been the only one. Thank god I'm not! I really feel the heat and living in Australia, the weather is really hot and humid in Summer. When it's cold I don't feel it as much as other People either. When I walk into a place I often put my sunnies on my head and by the time I've walked around a little and it's time to put my sunnies back on, the lenses are covered in condensation. I don't know if it's because I'm fat or PCOS or if I have very thick bushy frizzy curly and wavy hair, but it's rather embarassing. Hair straightening is futile as by the end of the day I have the waves up near my scalp.

Yep, as soon as I went on my first meds (effexor) my blood pressure went up and the weight started creeping on. I then quit smoking and that was it... BAM!

I'm thinking of getting a treadmill in. I might sound weird, but I'm happy doing laps of my biggish backyard. I reckon my neighborurs think I'm crazy LOL!. It's winter here at the moment and it's always raining where I live, so putting it in front of the tv or the window with my ipod seems like a good idea. I don't enjoy walking around the streets coz I get so far and think oh shit I have to walk all the way back when I've already had enough.