Calling all PCOSisters...

[maribelle]

Hello everyone, :wave
If you're reading this, you probably have PCOS like me, and I was wondering if we could maybe get together here and keep each other going when our "special symptoms" get us down. (Not that others aren't welcome) Maybe we could even meet in chat sometimes. I know its frustrating dealing with not only the weight, but the infertility, the painful fruitless and almost constant "PMS" pains, the hairiness...etc. etc. :anger So if you need to vent, lets vent and support together :hug ...sound good? Also I would love to hear if anyone with PCO who has been doing the diet for a while now has had any change (esp. for the better )in their mensus and fertility. So far, I went four months without even the slightest sign of mensus, but I've been on the diet two weeks tomorrow, and have spotted several times in the last week. I know there is super support on the ha , but if anyone is looking for some tailored to PCOS, then I hope we'll have it here. Thanks, all!

~Maribelle~

[lettuce_lover]

Hi there,
Sounds good. I would like to join. I have not been diagnosed yet but I have many of the symptoms. I went to the dermatologist for skin problems and she asked me many questions and told me to go to the gyno and get checked for PCOS.

It took forever to get an appointment with the gyno....2 months!!! So when I go i will see what the gyno says. I will probably have to wait 6 weeks and come back for some of the tests. Just how they do things here.

I do not really get my period and when I do it is almost nothing. I went for many years with only getting it 2x a year. That is of course okay for me buy I know when i want to have children it may not be possible. I just hope if I have this it is caught in time and there is something to do for it.

I have the extra hair growth and it drives me crazy. I tried laser treatment but it is not 100% and very expensive.

I will let you know if any of the symptoms improve with Atkins...I am on day 11. I am certain it will help.

kind regards

[Mariposa79]

Hey gals-

I was diagnosed with PCOS about two years ago. I had a huge cyst removed and been on Metformin and BCP. I re-started atkins on June 21st and so far I have lost 11 lbs.

I welcome any and all support, especially in dealing with PCOS.

[maribelle]

Hi Lettuce-lover, and Mariposa(congrats on your 11 pounds). I was diagnosed in 2000, and oddly enough the only trouble I had before getting pregnant with my son was yo yo weight, moodiness, and missing my period for a couple months after major stress, but pregnancy kicked the pcos into high gear, I almost lost my son and myself due to toxemia, and since I've only had mensus one or two times a year, the second usually lasting several months until I use progesterone cream. I'm not sure that even if I lose weight I will be able to have more children...since my son is now 5, the idea of having another seems like a whole lot of work and money, but DH and DS could use at least one more. Adoption is out of the question right now, because of financial status. Thanks for posting, and lets keep this thing going...if you ever need to vent, lets hear it!

~Maribelle~
PS I also tried Metformin for about a month...I immediately started losing weight, my period came back and my mood swings were almost non exsistant, but it made me SOOOO sick. Every time I tried to eat lettuce, I would have terrible cramps and diahrea...and the cost was a major deterant...$60 every month and a half. If Atkins alone isn't enough, I might try it again.

[MidnightJulliett]

I'm interested to know what initial symptoms you ladies experienced, and a little better explanation of what exactly PCOS is? I have terrible facial and body hair, and my periods are starting to become irregular and unpredictable. What gives?

[maribelle]

Hi Nadia. The most prevelant symptoms include unexplained weight gain, terrible carbohydrate cravings, mood swings, joint aches, anger, hot flashes, blood sugar issues, few to no periods, and/or periods that are violent and very lengthy, facial and sometimes chest hair, infertility, dark patches of skin,male pattern baldness and many others. The most prevelant physical symptom is a hardening of the ovaries, which doesn't allow the egg to pass into the fallopian tube, resulting in little follicles (or cysts) in the ovaries. Some women have no symptoms, some have all, some are heavy, some are thin, some can have kids, others can't....its all still very much a misunderstood illness. It seems to be the result of general hormonal imbalance combined with an insulin resistance issue, but as to what exactly causes it, its not known. Most doctors don't know anything about it...even GYNs The best sources of information I've found yet are the following links:

OBGYN.net (go to the PCOS pavillion)

PCOS.net

The best help for this illness so far seems to be a low carb lifestyle, exercise, vitamen therapy, herbal therapy, and progesterone cream. Hope this answers some of your questions.

~Maribelle~

[jillgarrison]

I have PCOS

I would love to join any forum -

I figured it out about 2 years ago....

I was an early started - started in the 5th grade I was 10 or 11 just remember no one else having to deal with such a thing.....

During school I wasnt "fat" per say - but I was shapely - (of course looking back on photos I looked darn healthy) I was always active in sports and led a stressful lil life -

I noticed my neck started to darken - I went to a derm. and he said I had Tenia-versa- colour (sp) which occurs in less than 1% of the African American people - I am not African American - white as snow - anyways I believed them - they are doctors - they gave me some meds - which could only be taken for short periods because of liver damage -

After I graduated high school it started to spread to my waist line my arm pits my inner upper thighs - went to the doctor and he said the same thing..... I just was beginning to believe I had some strange freak occurence..... (or maybe mom lied about dad LOL)

Anyways.... I have always been irregular - stress causes me alot of problems health wise....

I have the hair issue on my chin, the skin discolor, irregular periods, fast weight gain in the mid section, and so far not being to conceive after around a year of unprotected sex....

I want to say this though - Since I started Atkins -
periods are exactly 36 days apart
My discolored skin is lightening - almost not there

Just amazing - !!!!!!!!! And I have only lost 21 pounds

[frecklebeach]

I'm here too!

For years my doctor and I both thought I had PCOS - I had all the symptoms - I was hairy, had very irregular periods when I wasn't on the pill, chronic ovarian cysts - even on the pill! - moodiness, inability to lose weight, etc. etc. etc.

When my husband and I decided we'd like to try to get pregnant my GYNO sent me to an endocrinologist who ran lots and lots of tests. Come to find out I don't have PCOS but a related disorder that presents similarly. I have to much dihydrotestosterone. This PCOS related disorder will typically make me diabetic IF I don't lose the weight. And the disorder makes me gain SO... Long story short, I took Glucophage XR for 3 months, took some fertility pills, lost 17 pounds, and didn't get pregnant.

When we decided that we weren't going to try anymore - we're both fine with adoption - I stopped taking the Glucophage. It was a tough decision that the Doc and I made. I'm under strict orders NOT to gain one pound back and to continue to lose, or I'll have to be back on the meds.

Because I have insurance, the meds were not costly but I did have to take 4 HUGE HORSE pills a day. They also gave me diarrhea but it got better with time.

I'm not sure how I'm going to do with Atkins but I'm going to keep trying. So far I've lost 9 lbs and it's just been 15 days. This seems like the best diet for me as carbs and sugar are going to be a no-no (or really limited) for the rest of my life.

I'm glad there are other women out here who are talking about PCOS and how it affects their body/mind/soul.

I'd love to chat sometime.



aka Angie :joy

[maribelle]

Hi "cysters" ...so glad to have you all aboard!! Man, I'm learning so much more already just reading all your entries. Isn't it amazing how, although we all suffer many of the same things, some things are so differant! I wouldn't give up on the conception as long as you're on Atkins...although it always seems to help to just let go some times. There is an excellant article on OBGYN.net in the archives written by a doctor that very emphatically declares that with loss of weight and low carbing, many pcos'ers lose many to all symptoms, and regain their fertility. There is also a treatment available where a surgeon uses lazer to puncture the ovaries several times, resulting in softening of the ovaries and the release of little happy eggies!!!! There is a down side...as with everything. If copulation takes place too soon after the operation, it may result in large multiple conception, and it may bring on early menopause. I'm by no means a doctor...just quoting my research. It does supposedly return fertility for quite a long time. Good luck in your daily battles, gals. And chatting is definitely a great idea. I am usually on nights around 7 to 9 central time, and if you see me respond to a topic you are watching, just IM me, or send me a private message. I'm here many other times during the day, just can't say for sure when.

[SweetPixieChick]

Hi - another cyster here. My symptoms include extra facial hair, thinning hair, dark patches, few to no periods, weight issues, depression and hormonal moodiness.

I was diagnosed about 4-1/2 years ago. Before I knew I had PCOS, I had tried for 13 months to get pregnant before I finally did. Ended up with toxemia and had to deliver my daughter a month early. After that, I had almost no periods unless I took something (BCP or Provera). In late 1999/early 2000, it had been almost a year of TTC with nothing. Then my grandmother gave me a Woman's Day magazine that had an article in it about PCOS, and I was just going down the checklist thinking OMG This is me!

The only problem was the fertility doctor I went to. @@ First visit told me I had PCOS and did blood work. When I went back in 2 weeks, he said my tests were normal and my problems were from being overweight. When I finally got around to getting copies of my results, I was livid - my LH and FSH ratio was 3 to 1 (classic sign of PCOS). So I made an appt with a new doctor in the group, a woman who was very knowledgable about PCOS. She immediately put me on Metformin. Over the next 4 months, I lost about 20 pounds and actually got a period on my own! Even more unbelievable, I got pregnant on that cycle and had my son in June 2000, and I had continued to take metformin until 36 weeks with my OB's approval and in an informal study with Dr. Glueck.

We are done TTC now, but I still have the issues from PCOS. The last period I had was due to Provera, and I can't believe I didn't end up divorced during the 10 days I had to take it. Poor DH and kids got yelled at for such minor things that I cried about it later. I've tried progesterone instead of the synthetic, but it makes me have worse cramps than Provera, which is saying a lot since Provera makes me have horrible cramps the first 2 days. Has been this way since my first period at age 11 but Provera makes it worse. And I envy my sister with her 3-day periods since mine are always 8-9 days.

Well, this turned into a book! I have a hard time stopping sometimes, especially when it comes to PCOS. I have tons of links and information if anyone wants any. Spread the word! Good to have some cysters on here!

[indydog]

I've had PCOS for quite a few years now. I've had irregular periods since I started (I was 9) and lots of the other symptoms. Interestingly, my period has been regular (to the day) since I started Atkins...

Have had lots of trouble conceiving (hopefully soon). My husband is away on a summer field assignment so that makes it a bit more challenging. We'll begin taking other steps this fall should nothing happen during the rest of the summer.

Indy

[SweetPixieChick]

There is also a treatment available where a surgeon uses lazer to puncture the ovaries several times, resulting in softening of the ovaries and the release of little happy eggies!!!! There is a down side...as with everything. If copulation takes place too soon after the operation, it may result in large multiple conception, and it may bring on early menopause. I'm by no means a doctor...just quoting my research. It does supposedly return fertility for quite a long time.

I believe this is called ovarian drilling, and it should be done as a last resort. It can cause scarring on the ovaries that can block them more than the cysts.

[maribelle]

Hello Indy and Sweet pix...wow...there's alot of us here. I'm glad you both decided to post with us. Thank you for your info on the ovarian drilling...it is a drastic surgery, and every surgery has horrible risks, especially when weight is a factor. I think you are definitley right that it should be a last resort. My mom talked me out of going for it, because I'm only 30, and I haven't tried alot of other options. It is amazing how similar our stories are. I too conceived my son, got the toxemia, and delivered him 7 weeks early weighing only 2 lbs, 3 oz. That was a nightmare...and then after that the PCOS problems really took off. I had an endocrinologist tell me I didn't have PCO because all my tests came back normal...then I found out he didn't do the most important test that really reveals the illness, the 2 to 4 hour glucose intolerance test. And I also had the intervaginal ultrasound that reavealed 10 to 12 cysts in each ovary. I'm so happy you were able to conceive again....maybe I should of tried Metformin longer. I'm hoping Atkins will take care of my fertility without it though, because it is costly. Thanks for sharing your stories!

[AngelnPrincess]

I don't have PCOS... Ive been tested but it came back negitive... even though I do have symptoms... ANYWAY!
I just picked up the new "womans world" I get it weekly I love it! There is an artical in there on low carb diets and PCOS... quite interesting and insperational! Just thought maybe some of you might want a good article to read!

FYI!

Natalee

[SweetPixieChick]

I don't have PCOS... Ive been tested but it came back negitive... even though I do have symptoms... ANYWAY!
I just picked up the new "womans world" I get it weekly I love it! There is an artical in there on low carb diets and PCOS... quite interesting and insperational! Just thought maybe some of you might want a good article to read!

FYI!

Natalee

Natalee, do you know what your test results were? Like I posted above (and maribelle as well), I had "normal" test results but when I got the actual numbers, I was a textbook case. If I had gone only by what my first doctor said, I would still believe I was infertile just because of being overweight. That doctor had the nerve to tell me "At least you don't have a disease that will be with you the rest of your life." Ummm, I think knowing I have a disease that will be with me the rest of my life is better because that way I can try to minimize its effects on me.

Anyway, I don't want you to get misdiagnosed if you do have PCOS, and I hope that you actually don't as it is something that is with you the rest of your life. If you haven't already, get copies of your lab test results - you are the patient and you are entitled to them. I have learned that being an active participant in your healthcare can be as important as any tests in making sure you are taken care of. And doctors are human and can make mistakes or even be so set in what they believe to be right (think low-fat diet versus Atkins) that they can refuse to see the truth because they would be proved "wrong."