OTH Twitter Bugs

This morning I got an email in my Facebook inbox about signing a petition about a fertility issue that have been diagnosed with almost 5 yrs ago.  I decided the best place to post about it was my ever growing twitter, if I didnt reach MY followers, at least I knew that the info would go onto the public time line in the famous Twitter world. Little did I know I was going to get so many questions & actually support from others that have PCOS.

For those that dont know, PCOS is also known as Polycystic ovary (ovarian) syndrome. It is THE #1 infertility issue in 5-10% of women in reproductive ages, & the majority of OB/GYN’s seem to misdiagnose it. Only making the woman who is trying to get pregnant more frustrated to why she doesnt get pregnant. I never knew I couldnt get pregnant, I did start trying back in 2002 to get pregnant & it never happened, I didnt think anything- I did ask a doctor about a yr later & he said he usually would like to see over 18 months of no pregnancy scares before he looks further. In the summer of 2005 I woke up not feeling well, within an hour I almost passed out & had to go to the hospital after the fire rescue ( HOT- may I add!) found my blood sugar to be at 34 ( I do have diabetes in the family- but never thought it could happen to me).

I went to the doctor & my Primary Care Physician wasnt available, I was to see the Physician Assistant- I wasnt too thrilled but O well, little did I know he was an endocrinologist (a branch of medicine dealing with disorder of the endocrine system and its specific secretions called hormones, the integration of developmental events such as proliferation, growth, and differentiation (including histogenesis and organogenesis) and the coordination of metabolism, respiration, excretion, movement, reproduction, and sensory perception depend on chemical cues, substances synthesised and secreted by specialized cells.) A first for me, I didnt know what they did, til LATER. So I guess I was in the right hands after all. He didnt know for sure what was going on, but asked for me to come in the next day to do some tests, Id come in fasting & them go eat (splurge on whatever I wanted, pancakes with extra syrup [YUCKK]). So the next morning I did just that- a couple days later he calls, the 1st question out of his mouth as soon as I got on the phone was- “Have you been trying to get pregnant?” I said yes, for about 2-3yrs, & so he started to explain everything to me- he explained he could put me on the meds ( Metformin & then Clomid), & I would get pregnant within 3-6 months but that I would most likely have a terrible pregnancy because there would be a chance that I could get Gestational Diabetes & would have to shoot myself up with insulin, but he also said PCOS is reversible if I lose about 20-25% of my body weight, at that time that meant about 40lbs- I didnt think it was much- but little did I know that it wasnt easy, I tried different things & never lost the weight, in fact I continued to gain weight & since the day I got married I have gained over 55lbs & women who have PCOS has an imbalance in hormones & produce testosterone ( yes the same thing men have- thats why the acne & the extra hair growth), so it is even HARDER to lose weight, you have to get onto a SUPER strict diet & exercise program, I have tried different diets & going to the gym, but never VERY strict, & ive lost MAYBE like 3 lbs in 1 month, so I gave up.

I do NOT have diabetes but I do have  Hyperglycemia (High blood glucose), im boarder line. I do not test my blood everyday b/c the majority of the time everything comes out normal, but I do produce triple the amount of insulin, I am insulin resistant, but my blood sugar is usually always normal. After that day in the doctor’s office & the way I felt that day, I have ONLY felt like that maybe 2 or 3 more times, & thats because I ate something I shouldnt have & I have cut that food out of my life.

I feel fine, everyday. But I continue to gain weight every time & I dont do anything different than what I am used to, except I do walk longer distance sometimes while walking the dog & in the spring/summer time I try to go to the park & walk about 2 miles 3-4 times a week, I know I should be doing more but sometimes I dont have the time.

At one point I went to a fertility doctor- he cost me $325 for one visit (insurance does NOT cover fertility, at least private, personal insurance doesnt, group insurance sometimes do.) I wanted him to just plain & simple give me the meds I needed, he said NO- he wanted to run a million tests, so many tests that would eventually cost me out of pocket close to $3,000. I gave up, not knowing where else to go. Eventually I learned that I could have seen the endocrinologist or looked for an OB/GYN that specializes in infertility, but I learned that 3 yrs later.

Eventually I found a OB/GYN that was willing to skip the blood tests & just give me the medication needed for the PCOS- which was Metformin, a medication to control your glucose with diabetic people. They say it usually takes about 3 months for the medication to take affect & to give it another 3 months before starting Clomid (which is a fertility drug). I learned through my Best Friend that ONLY 10% of women become pregnant with Metformin ONLY. I wasnt that statistic, I had to start Clomid after 4 months, no pregnancy- we upped the dose of the Clomid for another 2 months before I finally gave up. I gave up in August- 6 months ago.

As I saw this email, I decided to post it & saw how people started to tell me how they also have PCOS, & others asking what it is, so I thought it would be great to write about it & maybe even start a Twitter dedicated to OTH fan’s that have PCOS & we can be each other as a support group. I sometimes log into those forums but dont feel like I ever become “friends” with anyone & we need that, share our stories- get advice, help- whatever it is to become more informed & hopefully become pregnant & then share that exciting news.

I will open a Twitter acct tomorrow, we will follow PCOS related people & I’ll even open a PCOS blog that will bring all the info to ONE place. For those interested in knowing more please feel free to follow us on this journey, for those that have PCOS- You are NOT alone, join us & let’s become friends & start our own circle of support, & if you know of anyone who has PCOS- let them know about what we are doing.

Thanks for reading & I hope I have taught you all something new today, & remember MORE women have PCOS than you know- they just dont know it yet!

For now- help us reach those that matter most & those in charge of getting us Americans the best health care possible & please sign this petition- I was told that ONLY people living in the US can sign it! Thanks-

Click here for petition