Share your success, your treatments, your plan

[DramaDame]

Good Monday Morning to Everyone:

I am hoping that others will want to share their success stories regarding their PCOS, their plans and perhaps their treatments.

Being told I had PCOS just confirmed for me a problem I had been trying to have identified for about 10 years. I was not told what I should do to help myself or how to make things different with my body. Through alot of research ( some on www.soulcysters.com) and asking of questions I feel I am now making some good choices regarding my health and future health happiness. I do not have all the answers about PCOS. I believe there are many ways of handling PCOS.

Please share your experiences about PCOS and perhaps you will help someone else on their path of seeking knowledge about how to handle their PCOS.

Currently I am taking Glucophage XR, chinese herbs, trying to eat by the Schwarzbein guidelines, trying to get some exercise daily, and receiving weekly accupuncture treatments. I have only been on Schwarzbein for two weeks but already I am feeling better then I have in quite a long time. Energy is improved, skin is clearing, period started shortly after beginning ( am unclear if this is due to Schwarzbein or not, will know within a month or so ) and I am finally feeling some sense of control.

Have you found certain foods make you function better? Are you able to gain or lose weight now? Are you finally ovulating? Hair growth less? Or more? Ect...

Thanks for you participation.

[Rachel22]

hi dramadme! i think that your idea is great. i love sharing my story in hopes that it will help someone in their problem solving.
my symptoms statred when i was 11. i would get my period about once a year and when i did it would be awful. i went to the OBGYN when i was 13 for tests and an ultra-sound, but nothing was diagnosed. i started birth control pills when i was 16 and that helped me. i started getting regular. but the symptoms never went away. when i got married i got off of the birth control and for 2 years i was irregular. when my husband i wanted to start trying i went to the doctors and explained my problems and they then diagosed me. i was so happy. to finally know what was wrong was a huge relief. i researched and became informed about my body. for about a year we went through a lot of medication and ultrasounds. without paying attention, we found out that we were pregnant and were so excited to know that i can actually have children. unfortunatly we had a miscarriage and we think that it is because of lack of hormones. it has been a long journey, but we are happy to know that the medication worked.
for now we are not going to do any treatment and let my body rest. i am not ready for the hot flashed and docotrs visits. but the future looks good.
when i was lowcarbing before, i was happy, energetic and losing weight. and now i am here to start again. maybe this way of life will help my body function normally. without pills.
i wish everyone luck in their journey of PCOS. i think that having people to support you makes everything better. i did find that the more i share my story the better i feel. so thanks!

[DramaDame]

Thanks for sharing Rachel22...it was nice to what is working and how everything is shaping up for another person with PCOS. Everyone's story is so different but, it helps to hear how others are finding results. DramaDame

[Sweater]

I am going to get an ultrasound on Monday to find out if I have PCOS. Even if I don't, I will have to start a regimen of B/C manage my hormones, which means I MUST quit smoking. Things are just getting so difficult and scary. I am worried that I'll not be able to have children...I'm only 18 (19 in a little over a month), but I got my first cycle at only 9 years old. What is the likely-hood that I'll be infertile?

[Rachel22]

hey sweater! well, i can't answer any questions for you. i am far from an expert. just because you got your period when you were young, doesn't mean you are infertile. a lot comes into play when you are infertile. just be patient. in due time. let me just say from my experience, don't stress. honestly, i know its hard not to think of what might not happen. but you will feel better being optimistic. not even optimism can help somtimes. just try and be realistic about the future.
it's weird. growing up all i ever wanted was children. i dreamed of being a mother and a wife. at college when i saw my advisor, she asked me what i wanted to do with my life. i answered her that i wanted to be a wife and a mother. not what she wanted to hear exactly, but thats me. it's always been. so for me to find out that i might not be able to have children, was devestating. but science is incredible, and so is the miracle of life. just try and take care of your body and try and meet as many of your goals before planning anything out. my advise is that you find out a diagnosis and take care of your body. then in time, things will plan out.
i only wish the best for you and your journey through this. i am always around if you want to talk. i actually enjoy talking about PCOS and infetility. any time. remember not to stress, and do as much research as you can. i feel sometimes i know more that the doctors do! good luck sweetie, and remember we are all here for you!

[DramaDame]

Hey Sweater:

Just think of it this way...at least they know that something is going on with your system and they are working on it...when I was 19 ( now I am 31) I was told go on the pill, go off the pill, you don't try enough, you are trying to hard, your in menopause, no your just weird, go away we don't know what is wrong with you....that pretty much sums it all up...even though it is very scary to wonder the big what if...just know that there is so much more that people know now and that they acknowledge happening to women...I recently found out at my niece's wedding that my sister had been diagnosed with PCOS...she has three lovely grown children...yes, it was a little harder for her to get pregnant but not impossible...lots of women with PCOS get pregnant very easily and don't even know anything is "wrong" with them....just search for all the answers you can get and don't take no for an answer from your doctors..check out www.soulcysters.com for lots of information...and just remember to take it one day at a time and know that being younger and figuring out what is happening with your body puts you way ahead of the curve...by the way, I don't have children but that has been a choice so far not because I am infertile or anything...also know that you can have completely normal looking ovaries and still have PCOS...that is the way it is in my case...however, I am starting week 8 of new program and am feeling better than I have in years...energy is returning...I have had two periods in that time frame....an unheard of thought before....and I feel so satisied with my eating....I went of my glucopahge for about two and half weeks for some blood work but now I am slowly going back up on it and I ultimately I want to be off it for good...big bonus for the first time in years the scale is going down and not up...hang in there...don't ignore this issue with your body...be proactive and you will be in the best place possible when you are reay to have children...oh, another thing...many women who have PCOS who have been told you can't have children have found that taking glucophage enables them to get pregnant...and they found this out by accident so there is even more hope for you there...stop by my journal if you want to chat about things more...I have had a long time to figure some of this stuff out...now it has a name...DramaDame

[willsmom7]

I was diagnosed with PCOS when I was 19 (I'm 35 now). My gyn put me on birth control and sent me on my way. At 22, I got pregnant within 1 month of going off the pill, but lost our baby at 22 weeks. Then it took a year of actually trying and being told I wouldn't conceive on my own, when I did. Then in 1995, I got pregnant with my son, again within a month or so of going off the pill. That seemed to help in getting pregnant.

So all these years of gaining weight and such, my dr never said that my health was really in danger. It was a real eye opener last year when I wanted to go back to my midwife and she wouldn't take me because my case was too "complicated". That kind of scared me, so I got online, found soulcysters.com and found an endocrinologist. I went to her last summer and she ran alot of blood work and found that my insulin level was twice as high as it should be, along with some of my other hormones that are out of wack. She put me on the metformin, that made me sick and then actos that made me gain weight. I was depressed and just didn't feel that just taking meds was going to help. I went back to my regular dr and she suggested I try Atkins. I did, and I have lost 15 pounds and feel tons better. My blood sugar is still a little high in the morning, so I may have to go back on the met, but were giving it some more time.

It's hard to admit that I have a serious health problem, and that I will have to eat this way for the rest of my life. But I just take it day by day.

[Rachel22]

i know i wrote a ton just yesterday, but i can't help it. like i said before, i love talking about it. i haven't been to the doctors for anything special since my miscarraige. but i was excited because i did get my period on my own. like you drama, getting my period is unknown to me without medication. i hopefully will be getting it in the next few days, but i know that i am still not "normal".
when i was first diagnosed with PCOS, it was a very scary thought. i have an incurable disease. yes, treatable, but i will never, ever be "normal". i am ok with that now, but i wasn't. it was hard to make people understand it though. i have now learned to summarize very well.
i am in a predicament right now though, and i would love to hear your thoughts ladies. it may be personal, but that's what i need. impartial advise. my husband and i tried for over a year to ahve a baby. after the miscarriage i decided that i wanted to wait until i was ready again and now i am going back to school. i will be in school for another 2 years or so. so now i am not sure if i want to start trying. here's the thing... my husband really wants a baby. he said he would love to have one by next year. he knows that it may not happen with all the medical stuff, but he still wants one. right now he is oversea's in iraq fighting, and of course i don't want to tell him no while he is there. but here's the thing. i am not sure if it's even a question or i am venting. but should i get back on medication and try and get regular so that we can try, or should i wait for a couple years? thats my problem. i know that i should be truly ready before i bring a child into this world. but the reason i am sharing this is because a few friends have kids and they tell me to go for it. others don't have kids and they tell me to wait. then my mother in law is dying for a grand baby. so i just need some advice. i shouldn't even be telling you guys this. its not even a question, is it? ahhh, i am sorry. it's a tough decision. when i see those babies and kids running around, i want to be a mother so badly. but then i think that i am finally going abck to school and getting things back in order. so it's tough. i know that i am young and i have a lot of time left. but i don't know. at least i can say thanks for reading. shouldn't i be writing this in my journal. anyway, thanks. i am gonna go now before i keep talking. i miss tlaking about it. thanks! bye.

[moth]

Hi.

I have been trying to get a diagnosis for SOMETHING for years. All the outward signs of PCOS are there and have been for years: big belly, bad acne, hirsuitism, yadda yadda yadda. But test after test, and GYN after GYN sent me away without any explanation. I finally did some research and found a good reproductive endocrinologist. He says that although all the tests come back normal, he can see from my past tests that there is some indication of a history of oddness, if not PCOS.

The good news is that through diet and exercise, I was able to get pregnant, not once but TWICE. Pregnancy was not easy for me, and I suspect this was because of the affects that PCOS had on my body. Having said that, it was worth it. As grumpy as I tend to be, I love having kids. If you are wondering, I was never on the pill for very long.

After this doctor gave his initial diagnosis, I went back to the internet as I had 7 years ago and did some research. This led me to low carb diets, and I went and bought the three most popular reads on the subject. And I read them. Some of them are a bit evangelistic for my taste, but I cobbled together a plan I could live with.

A little less than 2 months later, I went back to see the endocrinologist (appointments with this guy are hard to get). I had lost 17lbs. All I knew was that every pair of pants I owned buttoned. My gut was getting smaller. My skin is clearing up (though after 17 months of harsh acutane treatment, several years ago, this was no longer a huge concern). I am now taking Glucophage; I start the 1500mg dosage tomorrow morning.

I am also happy to have an answer. It gives me an enemy. Better still, it's started a chain reaction. Turns out my mother has it (or had it? -- she is sans uterus now); same for my grandmother. With the changes in diet, exercise and outlook, we may all live longer. Also, several of my friends are encouraged by my success and are starting Atkins.

The last 2+ months have been a huge ordeal. Can't eat this, can't eat that. Still cooking for my family, but not being able to eat with them. Once, I even gave my daughter some bad milk, because I wasn't drinking it anymore and I hadn't tasted it first. Learned the lesson after being puked on repeatedly: smell the milk before you pour!

I am not having any more children, but I do want to live to see my grandchildren. Maybe even some great grandchildren. Plus I have a closet full of clothes that I bought while living in Europe that I'd love to fit back into.

Erin

[Sweater]

It's hard to give someone advice about something so personal and so important - my first instinct is to keep my opinion to myself. However, since you're in school right now (with two years left), I wonder how likely it is that you'll be able to finish in a reasonable amount of time if you were to have a baby. If it were me, I would definitely wait...you said you wanted to wait until you were ready. Are you really ready to have a baby right now?

[soleilsun]

Okay so here is my story:
When I was 17 I started to notice thick white hair on my chin, then it turned to black and moved on my lip and sides of my cheeks. I could almost handle that...but then I noticed that my arm hair was changing and there seemed to be more and more hair sprouting up everywhere...my chest, stomach on my upper arms...it was unbelievably toturing and disgusting. I have always been overweight since I was in grade 3. I can remember in grade 6 eating and not stopping...I grew huge hips and everyhting changed. I have always been a healthy eater...my dad would forever bring fresh fruits and vegetables in the house from work...I'm sure I pigged out sometimes but to be this big and really not eat much more than my friends was crazy. About 5 years ago I read an article in Cosmo and it listed the symptoms of PCOS and said that you could do electrolysis, shave, wax or try androgen drugs. The thought of taking drugs was not appealling, but I went to the doctor anyways. She took all these tests and said they were normal and that it was hereditary....of course it is I did come from somewhere...but she never went further even when I gave her the article to read!!! So I switched doctors and he finally, after my begging and pleading sent me to and endcronologist. In December 2002 I finally got some answers and had some success. I'm not at the point in my life where I want to have kids, (as I am still trying to marry rich!!! :)), but things have got to change and then I started this whole atkins program and have seen a major change. I now at a bit of a stall...but am trying to drink lots (I also take diamox for Benign Intercranial Hypertension BIH which is a diuretic :( ) and getting more into working out. Anyways thats the past ten years in a couple of paragraphs.
I must say that this whole hirsutism thing has got to be the worst part of PCOS!! and I can tell that most of you feel the same way. I hope they come out with a quick fix soon!!! No hair...svelt bodies...regular monthly friends etc....

Soleilsun

[amk82]

Here's my story:
I was diagnosed when I was 19 (now 21). I knew something was wrong with me since I never got periods, but I didn't go to the doctor until I started gaining weight. My doctor put me on the pill and gave me a pamphlet about PCOS from like 1974. Since that was no help, I researched PCOS on the net and discovered low carb diets, so I tried the Atkins. This just made things worse... I started getting deprived which lead to binges which eventually lead to an eating disorder. In recovery I ended up gaining 36lbs. and my PCOS symptoms were worse than ever. I visited my gyno who just said to stay on the pill and I saw psychiatrist who told me my moodiness was depression and put me on antidepressants. I was a mess by then and gave up on traditional doctors.

So in February I went to see a naturopath, got a hormone test done (http://www.salivatest.com/) and found out my progesterone levels were almost unmeasureable (estrogen was also low). My naturopath explained that PCOS is basically just a disorder that causes low progesterone (low progesterone leads to Loss of libido, Obesity, Depression, Low thyroid, Facial hair, Water retention etc.) so he put me on natural progesterone cream. Wow I couldn't believe the difference! I thought I was just a moody person but it turned out it was just because my hormones were a mess. I started losing weight too! So I've been on the cream for a few months now, and I'm 100% med free!

This is my diet/exercise plan I follow: approx. 5 times a week I exercise, treadmill for about 36min or an hour of walking. I'm not on a specific diet but I do watch my carbs. No refined stuff, no sugar, only a serving or two of fruit a day, unlimited veggies (sans potatoes) etc. If I have carbs it's healthy carbs with fibre and I always have protein at the same time. I don't count carbs, but it's basically around 40% of my diet. I've lost 21lbs. so far and have 15 to go!

So that's my story. I hope it inspires people. If your doctor can't help you, persist and find another! It tooks me 2 years to find a doctor (my naturopath) who actually knows something about PCOS.

[Rachel22]

WOW, i am so glad that this forum was started! i love to hear about other women dealing with this. it just gives the rest of us encouragment that we are not alone. i am so thankful. i must say that i haven't been low carbing lately. why you ask? well, ladies.....because i am stupid. i have been on vacation for the past month and will be until the end of this month. sounds nice, huh? it's not that great. kind of a forced vacation. my husband is in iraq, and i wasn't gonna stay in texas alone! anyway, i was on low fat for about a week and a half or so and lost about 7 pounds. which is pretty good considering my track record. while i am here, i just have to eat at those places you grew up on. all the BAD food, high carbs. so i keep procrastonating longer and longer. i will find it easier when i get back to my own life and routine. (i hope)
well, i heard you talk about the hormone cream. my mom tried to get me to use it once and i said no. but i think that i will try it. i am med free also right now, but we'll see in a few months if i stay that way.
LADIES, keep up the great work. you are all doing great and remember to keep telling your story. because one day someone will hear it and hopefully be diagnosed! take care!

[lizzi.uk]

My Story:

I am new here and I am finding great help from other peoples stories.

I was diagnosed with PCOS about 8 years ago. I suffere terribly from hirsutism and get very down about it. I Seem to have my weight loss osrted have lost 70+ pounds on Atkins in the last two years. I am currently on Metformin and owuld recommend it, it seems to be helping my moods and aiding weight loss.

I would really like to hear more about natural progesterone cream it sounds as though that may help me.

I am really happy to have found this site!!:)