New to SoulCysters not new to PCOS

CathyJ · 04-30-2008, 02:42 PM

I just wanted to take a minute to introduce myself. My name is Cathy I am 31 years old. I was diagnosed with PCOS about three years ago. After I was diagnosed I was completely devastated because I had been to four or five doctors to try and figure out what was going on and although this one got the diagnosis right, he said it was no big deal! After that, I really kind of gave up on ever resolving some of my medical issues. However, I FINALLY found a great doctor, an endocrinologist who has been wonderful and actually seems to know what he is doing! I currently take what I call a "cocktail" of medications, but they seem to be working and I feel better than I have in years!

AngelaGrace · 04-30-2008, 04:06 PM

Welcome to SoulCysters!!

Sarah Louise · 05-01-2008, 10:01 AM

Welcome to SC !! I think its great you have found a endocrinologist that has been able to help !!!

rekabla · 05-01-2008, 02:15 PM

Hi there - This is my first time posting! I spent all day reading and felt like a sponge! However, I am still in that spot where I feel I'll never feel like my old self again. I was just wondering how you came upon your doctor and what kind of cocktail you're on. Here's my story:

PCP - says only way to cure PCOS is to lose weight. I do. Nothing changes. Referred me to Dr. Nader at Herman Memorial Houston.

Dr. Nader - Seemed to know how to get people w/ PCOS pregnant, I was young & I put up with her talking down to me in a way that made me cry almost every apptmt. She did a D&C on me without even telling me to take an asperin and sent me back to work. I didn't know any better, I was young. Finally came down to IVF, but that was real expensive and I didn't FEEL any better and periods still weren't regular. I wanted a specialist for PCOS specifically before going to IVF and at the time i was like 28, I didn't feel like clock was ticking.

Lapband - based on the fact everyone told me I needed to lose weight I was 268 and qualified for lapband - I did it! I thought it was going to solve all my problems. It didn't. It helped keep ME in control of diet though and so I've been on SB on and off I'm not perfect. I now have regular periods and no more hypothyroid or high bp. I still have sleep apnea, though. 190 lbs. like the day I got married in 2000!

Dr. Allon - Through my own research found him and he tested and tested and came to bottom line I needed IVF. But what about treating the PCOS? Pregnancy was secondary. I told him I wasn't in a big hurry and would rather try treating the PCOS first before going straight to IVF also b/c my husband was living in another city. He slammed the folder, gave me a dirty look and wrote a prescription for Metformin but said he didn't think it would work b/c lap band doesn't let it be digested fully, he also sold me his products cinammon & fish oil tablets. And he reminded me my window was closing in by 37 I'd have problems even w/ IVF. And I've not been back.

I found out from reading yesterday that there is a liquid Metformin - why didn't he give me that? Probably b/c he makes money on IVF. I've since moved to same city as my hubby and have also been diagnosed with PMDD, which I probably had all along but since my periods only came once in a blue moon my doc told me it was gen. anxiety. Now that I'm eating better and excercise daily my periods are clockwork and so are the mood swings.
Thanks. Desperate here!

Eva37 · 05-01-2008, 04:14 PM

welcome to sc

glad you have a good endo now.
eva

CathyJ · 05-07-2008, 02:43 PM

My full story is long,,,but maybe this will help someone new. I was lucky enough to have children, but I was very young (which according to my endo is the only reason I had them). They say things happen for a reason, and I believe that they do.
Anyway, when I was 17, I had my daughter, and when I was 20 I had twin boys. I had always had irregular cycles, but every docotor I came across said it was no big deal. (if I'd only known!). Right after my twins were born, is when everything went haywire so to speak. I put on an excessive amount of weight, stopped having menstrual cycles all together, etc. I went back to the doctor about six months after the twins were born, and had gained nearly 40 pounds. The doctor and I talked, and I told him all the symptoms I was having, and he just told me I needed to try harder to lose weight. I got mad, because no matter how hard I tried, I still couldn't lose. So, I went to another dr., who I am sure was missing a few brain cells, because he told me I had too many kids too close together and my body was shutting down, but it was completely NORMAL!!! Then I went to the next doctor who said I was just depressed from the weight gain, and tried to put me on Prozac! Okay, so at this point I gave up on doctors, and never mentioned the problems again, I even stopped going to the OB/GYN. BAD MISTAKE!!!! So, things keep getting worse, and I start getting dizzy, and having this severe pain where my ovaries are. So after about three years of not seeing an OB/GYN, I found a new one and went. I don't think I was in his office more than 5 seconds, and when I started talking he said, I already know what is going on with you , you have PCOS, and you are probably IR plus I had a large ovarian tumor (13 lbs. to be exact) that he found. I was shocked, I had finally found someone who didn't think I was crazy!!! He started me on Metformin, scheduled surgery, and said he wanted me to see an Endo. before things got any further out of hand than they already were. So, he made me an appointment, and it took over six months to get in, but it was worth the wait! The Endo was great too, and seemed to know exactly what he was doing! He put me on the following meds:
Metformin 500mg two times a day (for PCOS and IR)
Lisinopril 10mg one per day (to protect my kidneys)
Spirnolactone two per day (for Hirsutism)
Triglide 160mg one per day (for elevated Triglycerides)
Lovaza 1000mg four per day (for elevated Triglycerides)
Byetta 10mcg injection two per day (for PCOS and IR)
Honestly, I told him he was crazy at first if he thought I would take all those meds, and he said, just try it for six months, if you don't think it is helping you then we will stop, but I guarantee you will see an improvment. And, he was sooooooo right!!!!
Okay, sorry for the book , but I just thought I would let you know since Rekabla asked, and also if anyone new out there is going through the same issues. If you want to know anymore, you can email me at jude.17@osu.edu Have a great day!

CathyJ · 05-07-2008, 02:49 PM

I also forgot to add, that since I have been on the meds that the endo perscribed, I have lost 30 pounds, which is great for someone who couldn't lose before! Plus, I feel better! I am not sure if its the med, the weight loss, or a combination of both, but in any event, I thought you should know that too! Okay, I am done,,,,for now! : )

camarofanatic90 · 05-07-2008, 07:45 PM

rekabla · 05-08-2008, 06:12 PM

I guess I don't have good chat-room etiquette (I've never even joined a chatroom before); I didn't realize there was an etiquette for this kind of thing. I understand that without organization there is not an easy way for someone seeking info to find it - so my point is - thank you for posting your story here. I really did want to know your story b/c I'm so tired of reading bits and pieces (I'm trying this and I'm trying that) and you actually have a combination that is WORKING for you. A success story - and not just a pregnancy success story. I just don't know how people can even think about getting pregnant feeling this way (assuming they feel the way I do). I feel like a crazy person 2 weeks out of every month at least....I can't think straight. I just don't think I'd be a very good mom feeling like this and it's so important to me - don't get me wrong, but I'm serious when I say I feel debilitated. My husband gets mad at me and says things like "You find strength" and "You can't focus on your problems when you have kids so you feel better" sometimes I think he's right and then I do something like start soup on the stove and in two seconds I forget all about it - only to find it 45 minutes later burned to the pan. I do these types of things constantly. I'm so ashamed, my cat has always knocked over glasses of water with her paw, and I was already in bed and I heard her messing with the glass. I got so furious so fast, I stormed out of bed, grabbed the glass and threw the water at her! What is WRONG with me???? Who DOES that? As soon as I did it, of course I felt HORRIBLE. I just feel so unstable. I've got another appointment with another doctor mentioned here and I'm at least going to be put on a mood stabilizer so I don't fly off the handle so fast. I sometimes lose my vision I get so upset so fast....it's really scary. Most of the time I'm okay, but these are moments I have every month. My friend said I remind her of herself when she had postpartum after her 2nd child. She says I even have the same tired look in my eyes at this time of the month - every month. We've worked together for 8 years and I thank goodness for her pulling me aside to talk about it, she's someone who knows me and it made me feel better that she noticed and it's not all in my head as my hubby says.