PCOS.. My Story.

babebelle06 · 06-18-2009, 08:56 PM

First off, I will tell my story and how I got to the point I am right now. After I have some questions that fill my mind often and curious if anyone could help me.

I started my period at the age of 12. From day one I had have problems with my period. I would get them every once in awhile and it would be brown spotting. Then when I hit 15 years old I bled for 6 months straight and NO ONE could figure out why. I was put on two birthcontrols pills a day to stop it but it didn't work so after that I was put on Depo Provera and I still bled through. I was on it for 3 years. I went from 120 pounds to 250 within a year,which was bad on emotionally. After 3 years of the shots I decided that It was the shot that was causing the weight gain, which I was told it wasnt. So, I stopped the shot and I didnt have a period for a year. I lost weight I got down to about 150 and was finally happy. Also, At the age of 15 I started having problems with my bladder and kidneys. I get UTIs very often once or twice a month. I also wet the bed. When i say wet its not a little its a lot. Like my whole body is covered in urine and no one knows why. I also have tons of pain in my lower back and around my kidneys. I also hurt so bad in my pelvis that it shots pains into my thighs and its the most painful thing ever.I also urinate ALOT. I have seen 4 different Urologist and no one knows what is going on with me. I also at the age of 15 found out that I had Diabetes. Type 2 to be excat. I thought nothing of it because it runs in my family. After getting off the depo shot i decided no birth control for me. So i went a year without it and still didnt have a period. I was worried so I got back on it and I started gaining my weight back and I was not doing anything differently. I was so upset I didnt know where to turn. After 6 years of being in pain and confused and tired. I have no engery I'm always tired or not feeling well. Mostly I stay depresssed. My doctor told me that I may have PCOS. I didnt think much of it and was explaining everything to my friend michelle and told her all the problems I had have for 6 years. She asked one of the doctors at her work and he said he wanted to take on my case because it was interesting to him. After having an ultrasound and blood work he informs me that my ovaries are very enlarged and full of cysts and located behind my uterus which i know is not normal. He wants me to see a specialist in Vanderbilt but no insurance. Here I am at the age of 21 and I find out after 6 years of living in pain that I have PCOS and Endometriosis. I'm so happy to finally have the answer but I have yet to be able to see a gyn for it because I lost my insurance. I'm a college student and I'm constantly sick and its really messing up my dreams. I saw a gyn and he is retarded. I know some about PCOS and Endometriosis from the internet but I would like to learn more and be more educated. I have a couple of questions if someone could help me.

1. Is PCOS common? how many women does it affect?
2. Can it go away? If there a cure?
3. Do the cysts pop? If so what is done about that?
4. Does anyone know a doctor in TN that specialize in PCOS?
5. Does anyone else have the samebladder issues that I have? I was told it was from Endometriosis connecting to my bladder and kidneys.
6. Whats the percentage for having kids?
7. What does the future hold for most women with PCOS?

Thank you for taking the time to read this. Have a good day.

KatCarney · 06-18-2009, 09:13 PM

These links might get you started:

FREE 115-Page PCOS Book (PDF instant access)

Predictors of Pregnancy in Women with Polycystic Ovary Syndrome

Chance of Pregnancy in PCOS May Increase with Age

also take a look at the stickies at the top of various forums. Lots of good info there, and in the Research Articles section here: http://www.soulcysters.net/forumdisplay.php?f=45

dillydaydreams · 06-18-2009, 09:28 PM

Hello and welcome.
Thankyou for sharing your story.
I am sorry to hear u have endured so much, the only thing I can say to make you feel ok is things will get better with the right help and advice.
You say you have no insurance so I know it is difficult at the moment, so hopefully you will find yourself in a better situation soon. I am from Ireland so I do not know much about your health service, I just know it is very expensive for you.
I also have PCOS and endometriosis so I understand alot of what you say. I used to also have alot of trouble with UTI's, severe pain etc.
I suffered excruciating pain with the endometriosis, I will never forget it, but I am ok now and there is light at the end of the tunnel. Besides pain relief I took the contraceptive pill (back to back), i.e. no 7 day break for almost 4 yrs, and it did help.
There is help out there, it is just a matter of finding a good gyny, so I hope you find one very soon.
Take every step gradually, deal with one thing at a time, and try not to worry about everything at once. I always thought from what I heard and read that I would never have a baby, it was a journey but I got there in the end.
You will find some good advice here so stick around.
Best wishes!