How long have you have PCOS?

FLALATINA · 07-01-2004, 03:11 AM

I know i'll be taking these med's for quite a while, but i was curious about who's had pcos the longest? and if you have had any other health issue such as liver or kidney problem, cancer or heart disease. Do you feel that you are healthier now that when you first got pcos? Thank you for your reply's.

amshum · 07-01-2004, 03:52 AM

Well, I've had the signs and symptoms since age 12 when I started my periods (hair loss, irregular periods, weight gain, etc.). I was diagnosed with PCOS only a couple of years ago, and at that time was told about my IR, and put on medication.

My other health problems include:

HYPO-thyroid (dx'd at 16 and treated with meds)
High Cholesterol (controlled with meds)
History of Kidney Stones (4 since the age of 19)
Poor Immune System
TMJ

As a side note, I suffer from terrible insomnia and am tired most of the time because of this.

I know I haven't had PCOS the longest. I think most people have signs starting around puberty. I do have TMJ because I grind my teeth at night and clinch my jaw quite often thru the day.

My meds are listed in my siggy for those interested.

Toodles!

Julius · 07-01-2004, 08:23 AM

I started showing signs pretty much right at puberty too, so sometime between the age of 11 and 12. (10-11 years ago) Sudden weight gain, two or three periods a year, excess hair...

I was lucky enough to be diagnosed around 1998 at age 17, when many women were still suffering with the unknown. I was put on the pill and kind of pushed it to the back of my mind until this year when I decided I want to reclaim control on my life.

Other than this, I'm pretty healthy. Bad eyesight and bad balance, but that's nothing too unusual.

Do I feel healthier now than when I was first diagnosed? Kind of... I am more aware of what I put into my body now and what sorts of activites I do. But I'm sure my four years of university living put a strain on my body as well.

Candace · 07-01-2004, 10:16 AM

in 1988-I am almost 38. No cancer, heart disease or any other problems besides pure misery when my blood sugars go too high (or maybe insulin) sleepy fatigue whatever you want to call it...
Exercise has made a drastic difference in my life along with extreme diet changes. I drink Atkins shakes for breakfast every day and have for over a year. In 1988, when I was diagnosed Metformin wasn't a known treatment by my doctor at the time so my feeling is for many years I was basically left untreated (besides taking the pill). I feel that that contributed to a major malfunction in my hormonal system a few years back regarding my food intake and the severe reactions I was having to carbohydrates. I didn't know until I found this site that the my metabolism was basically haywire, but I did link the fact that when I ate anything I felt really really awful. Food did not give me energy, in fact it is the opposite. I eat balanced and stay away from sugar. A friend on the site says for us sugar = poison. She is so right!

Blessings!

Candace

burbuhas · 07-01-2004, 12:52 PM

Imo, PCOS is not something that you just develope one day. I believe you either have it or you don't. Most woman with PCOS tend to start showing signs when we hit puberty, others, it seems the symptoms can be dormant depending on diffrent things, such as BCP. There is still so much that isn't know about PCOS. I started showing signs when I was 12, that was in 1985 and didn't get an actual DX until I was 17. I personally believe that PCOS is genetic. There are so many signs of it on both sides of my family. I have cousings that have been dx'd with it and if you look back in my family tree, there is a lot of problems with adult onset diabeties, weight problems, hair loss, AF problems, infertility, hysterectomies of the woman in my family in their 30's and eairly 40's. In the research that I have done, I truely believe that PCOS is linked to IR. I know there are alot of woman with PCOS that are within normal limits when checked for IR, but that is based on national standards. But, what is "normal" for me, might not be normal for someone else. Again, this is jmo.

squidge63 · 07-01-2004, 01:01 PM

I was diagnosed around 1981/82 at the age of 18.. was hairy from about the age of 8, started shaving at 14, had about 1 maybe 2 normal periods about age of 12 and then they stopped.

Things i have been diagnosed with :

1981/82 - pcos (have tried BPs - microgynon then dianette, other forms of female hormones - never been able to tolerate any of them for longer than 2 weeks... dexamethasone, spironolactone which i tried 20yrs ago but was taken off as i had small periods every other week... back on spiro 3 years ago)

1987 - longterm problem with pain and swelling affecting my left calf and foot

1996 - arthritis in my neck (probably in other joints by now as they all hurt, on arthrotec)

1999 - Chest pain (on tildiem, ikoral, aspirin and bisoprolol, gtn spray)

1999 - Diabetes 2 (started as diet controlled, then metformin, then gliclizide was added, now on insulin and metformin)

1999 - high cholesterol (on simvastatin)

2002 - depression (personal problems, then lost my job and then my car was written off...all in about 6 months.. on amitriptyline)

2002 - developed a hernia, had that repaired 2003

2003 - problem with left leg that had been stable for about 7 years came back with vengeance. tests done at local hospital, dr said she didnt think it was what was diagnosed in 89 but couldnt give me exlanaition as to why after about 10 - 15 mins of walking my leg swells and is painful.. so got referred back to original team i was under. Saw him yesterday, for more tests and an MRI.

2003 - TSH test came back abnormal, ? hypothyroid, repeat test was normal.

2004 - groin pain which dr's think is a compressed nerve, waiting for tests, and pain clinic appt.

2004 - uterine polyp removed in may due to abnormal bleeding... still freakin bleeding, have follow up appt next week, so willinorm them of this.

2004 - numb, tingly little and ring fingers on my left hand.. diagnosed as possibly carpal tunnel syndrome, see hand surgeon on 13th july. a friend who is on thyroxine said that she was told she had carpal tunnel, but it turned out she was hypothyroid, so who knows....

2004 - my knees have been dodgy since the age of 11, but my left one now is really painful and when i bend it, it sounds like gravel, waiting for physio appt and then probable referral to orthopedic team.

2004 - went for yearly endo appt last month and found i had a new consultant who was extremely angry at my treatment or lack of it over the past 20 yrs... so have more bloodwork to be done and see him again in dec.

in between all this i am currently seeing the cardiologist regularly as i had become tolerant to one of the tablets i was on, so he is slowly increasing one of the new tabs he has me on. i have my 4 monthly diabetic check, so lately my life has been spent sitting in hospitals.... with about 3 appointments a month.

i know that the diabetes is from the pcos...

Bekah1999 · 07-02-2004, 03:56 PM

I was officially diagnosed in 1994 when my dh & I started ttc #1. I knew we would have problems ttc because since I started puberty at 14 my cycles had always been messed up. Up until that time (1994) drs could not figure out what was wrong with me. One told me I had a small brain tumor (something every 19 year old wants to hear), another told me that it was normal for young girls to have irregular cycles and put me on the pill only to have me bleed on them for months straight. I had another doctor in my early 20's tell me he'd find out what was wrong with me, only months later he told me he had no clue. Finally when I was 26 I got my diagnosis.

Since then things have looked up. After having my dd I started on Met and that helped considerably. Now I'm on Actos and finally my face is acne free, I no longer have sugar cravings, and I actually feel good about myself! I just finally have gotten to the point where I am ok with pcos. I'm not happy I have it, but I can live with it and be happy with myself too. I just take my meds, watch what I eat, get exercise, and Thank God for being blessed with all that I have.

StarMaiden · 07-02-2004, 09:34 PM

I was diagnosed with PCOS when I was seven, and I believe I have had it since I was born. I'm 44 now. Does that mean I win the prize?

Seriously, though, I never felt "unhealthy" through my adult years when I had PCOS. It was just a condition, not ill-health, as far as I was concerned. Now, I was also morbidly obese.....

No, I didn't think I was unhealthy till last summer, when I developed diabetes, then I had to become more realistic about my health. And now, almost a year later, I am much much healthier! Exercise! Better diet.

But I never though PCOS in and of itself was "ill-health."

audio_girl · 07-05-2004, 11:19 AM

For me in retrospect at about six-years-old some physical symptoms of stein-leventhal (pcos) appeared. This is my theory, no doctor has ever told me this. At the time it was simply viewed as a "strange" sickness...

-Upset stomach, unable to hold food down. Felt weak and slightly dizzy. Flu-like but never went away; sometimes had to be hooked up to IV's. In and out of hospital, and in and out of school

-Temporary hypertension

-Blacked out and had convulsions. Turned out to be grand mal seizures (had three in one day). Epilepsy suspected

-Fairly sudden major weight gain; previously in normal range. (Mom told me the doctors said it was probably from the meds I was on, but she thought they were guessing)

-Abnormally early puberty. Small breasts and pubic hair by or before 8

-Wilson's Disease suspected. Kidney cancer suspected; admitted to cancer ward for testing (test results were negative)

-Symptoms slowly stabilized. Doctors suspected it may have been psychosomatic (in layman's terms), or something strange I'd outgrow

Based on reading since my diagnosis, I now know those symptoms can be linked to abnormal insulin/hormone levels. I theorize that when I became more stabilized my body was becoming more adjusted to the hormone abnormalities that made me physically ill.

It wasn't until my late teens that the classic symptoms developed (weight problems, acne, hair loss, hirsutism). I believe I was born with stein-leventhal syndrome and I've been affected by it all my life. But once I got past the above "adjustment period", physically I have bad days, but usually I'm okay. And yes, since being properly diagnosed and treated, I'm way healthier and feel 100% better!

kwannabee · 07-06-2004, 05:02 PM

This is a good thread...makes me reflect on everything, sort of like a timeline...

I had my first (and Only) af when i was 12 (i'm now 36)

3 years later i hadnt had another one, went to a doctor who did my first pap, nothing abnormal...didnt worry about it (i was so naive

)

at 15 was put on bcp's i think......

by 18 still no (unmedicated) periods so made my mom take me to a specialist who examined me and told me he'd heard about something called pcos but didnt know alot about it, it wasnt very well researched. He'd read about it in a magazine

-had a followup appointment where they decided to do a cervical exam...thought i had hpv but wasnt sexually active so there was no way to get it, never figured that out...hmmmmmm...

-early 20's...terrible terrible acne...cystic...absolutely awful. Tried everything, accutane even...nothing worked. Got switched to a low/no-dose estrogen bcp. Weight gain, mood swings, hormonal rages (got mad at brother for eating all the hamberger helper once...i'll never live that down!! :p) Sporadic periods of no meds therefore no periods...depended on my mood.

-taken off bcps and put on progesterone 10-15days per month...only way i ever had a period

-late 20's got married, started ttc-ing right away! No luck, no protection, put on waiting lists and waited. hair started falling out, extremely moody...a read old hag to live with. I'm surprised we're still together..

at 28-saw endo for first time. put me on clomid first didnt work...moved right to injectibles and had a baby.

-wa put on diane-35 and loved it, doc made me go off it cuz they said it was high risk for blood clots...switched to another pill which didnt control my symptoms as well...

at 31-back to endo for 2nd pregnancy 'preperation'-dx'd with IR
and he put me on metformin.

-for second pregnancy, tried clomid again, letrozole, higher dosage of met, weight loss with WW...nothing made me ovulate on my own..still dont. Needed the pure fsh injections and hcg trigger...

-both pregnancies had incompetant cervix, only recently confirmed. Dont know if there is a hormonal connection there...trying to find that out. Was not on metformin during pregs...dont know if that would have made a difference...also had gestational diabetes and pregnancy induced hypertension...but only just starting before going into premature labor...dont know how bad i would have gotten...

Currently, on metformin and switched from provera (that i've used since 15) to prometrium.
-switched to IR diet (woe), more vitimins, lower complex carb diet...maintaining weight at 190 for about 5 years...cant get any lower...frustrated!!

major issues with me:

-high insulin (now back in normal range)
-high testesterone (now back in normal range)
-normalized fasting bloodsugar
-2:1 ratio lh/fsh (always thought i was way worse then that)

progestorone levels...deficient
estrogen levels...dominant
(but dont by how much)

major recommedation by re at this point: lose weight :p

Whew...thats alot of crap to deal with eh?? No wonder we all are so frustrated with this...thanks for giving me this opportunity to remember everything...

Good luck to you all!

FLALATINA · 07-13-2004, 12:08 AM

Awesome replies, u have no idea what this has done for me. My boyfriend's sister recently passed of Breast Cancer. Ever since i have been such a worry wort. She took excellent care of herself and here im at 240 pounds, lazy, and forget my med's consistently.

I know that i need to make some serious changes based on the feedback from everyone. I feel like i'm doing something wrong. Like i run away from it instead of facing that fact that i'm not as skinny as my sister and that my body works different than her.

I guess i never wanted to complain but my doc's suck. They have misdiagnosed me since 3 when i first fainted. They told my mom is was hypoglycemia which i believe was and underlining cause for PCOS.

I feel immature. Because when i read your email and print them is like i'm talking to a doctor. You guys have all the info i really need. I wonder if you guys where ever felt like me in the beginning. You guys sound like pro's

Some of you stick with your plans so well, do you gals have any guidance.
I have wasted 3yrs of my life. I not serious about my condition and that why i posted this thread i feel hopeless.

All i do is take my med and i barely do that. I want to attack this condition not let it control me.

I appreciate anyone comments, i dont' care if it hurts, i need to know the truth.

Thank you all so much!!!

Candace · 07-13-2004, 12:49 AM

I will be 38 in a couple of weeks. I was rediagnosed at 34 due to severe symptoms. I could tolerate the symptoms until then. I suddenly lost my brain, gained weight really fast and knew I was out of control hormonally! I was going to have to help myself and find someone that would help me. I found an endo willing to let me dose myself with the Metformin. (I started with 2000 mgs). I have HAD to adjust my diet considerably. I has taken 3 years for me to realize that my diet could not work with this syndrome. I have to eat healthy to feel normal and keep my weight under control and exercise has been the key to the whole syndrome for me. Do i like it????NO!!!!! But after feeling the way I did almost four years ago and today it is drastic and I mean a drastic difference. I made the decision that I wanted to look and feel normal! I knew hairy and overweight was not my idea of feeling good! I just had to make the decision to change everything. That is a hard decision. Some days I fall off the wagon but most of the time when I fall off I am miserable. I hope you get the answers you are looking for. I have a severe history of diabetes and I sure don't want to deal with that. I am hoping to stave it off for a while....forever if possible.

Blessings!

Candace