I'm a newbie that needs some support :)

Layla217 · 05-08-2008, 08:00 PM

Hi everyone!

I have a few questions, and in need of some support - no one truly understands what I'm going through. This is a bit long...

Ok, so here's my story

I'm 22 years old, and my regular doctor diagnosed me in Jan 2007 with PCOS by knowing that I had a cyst once the size of a quarter on my ovary, that my periods were never normal (I'd sometimes go 6 months without a period), that I'm slightly overweight (mostly around my waist), and I have facial/chest hair (that I get rid of asap, lol). When I did have a period, it was extremely heavy to the point where I'd pass out from the pain.

First question - is a doctor able to tell you that you have PCOS just by those symptoms, or does she have to look at blood results and an ultrasound? How were you diagnosed with it?

I used to have a different doctor two years ago that referred me to my gynecologist, but we switched insurance companies and I ended up with the new doctor that diagnosed me. I stupidly did not go back to that gynecologist - or any other one - for about two years, ever since we switched insurance companies. That gyno was really nice - but two years ago, I wasn't having the problems I am now so I wasn't able to talk to her about them. Anyway, we finally, FINALLY just switched back to my old regular doctor from two years ago (who I have an appointment with on Tuesday) who will be able to give me a referral to my old gyno. ...Sorry, I just realized how confusing this must be getting, hehe.

The doctor that diagnosed me with PCOS insisted on doing everything herself (which is a reason I at first didn't feel a need to go to a gynecologist), she never referred me to a specialist for anything (I also have hypothyroidism). So, now that I'm older and less naive, I'm becoming more conscious about my health and refuse to let her do everything. I'm feeling awful - which means she must not be doing something right. My new doctor will hopefully send me to my gynecologist and an endocrinologist - and I'll finally be able to be treated right for everything.

So...back to Jan 2007. She put me on Metformin (500mcg twice a day) and I took it religiously for about 9 months. It made my period somewhat normal, instead of six months, it was coming every two - but I'd still feel lethargic and I wouldn't lose weight no matter how hard I tried. I had no energy, I was emotional, and my periods were still just as heavy and painful. After about 9 months, I stopped taking the Metformin because of the side effects - and I immediately felt better, but my periods were back to being late.

I've been feeling constant pelvic pain for I don't even know how long now... which brings me to my second question - did you all feel constant lower abdominal pain (where you feel cramps during your period) before you took any medication for your PCOS? In other words, is this pain normal for not being medicated right now?

So, in January of this year, she put me on the birth control Yasmin (not knowing that I stopped taking the Metformin, because I tried telling her once before that I want to stop taking it and she flipped, lol) and I took Yasmin for the past three months. I felt good the past three months with my period coming on time, but I started getting cysts on my breasts because of the pill! Either way, I don't have enough money to renew my prescription, and the new doctor probably won't renew my prescription anyway until I see my gynecologist. Ever since I went off the pill, my breasts feel better and the breast cysts are gone. So, I don't want to take any medication for PCOS until 1) I know for sure that I even HAVE it, and 2) I see someone who knows what they're doing and diagnoses me correctly with the right medication.

With both conditions, I've been feeling awful lately. That stupid doctor insisted on looking at my Thyroid herself - and she changed my medication dosage but I feel worse than I did before. This is when I realized that she doesn't know what she's doing and I finally decided that I'm taking control of my health.

My family is getting fed up with me being so tired and emotional all the time, but they don't seem to understand that I can't help it. They care and want me to feel better, but don't really make an effort to be a part of it or to help me get the care that I need. I've always been afraid to go to a new gynecologist and I've just been suffering without getting the help that I need. Stupid, I know. But I finally figured that it's time to do something about this, because I've had enough of being so tired and blah all the time. I want to do whatever I can to make sure I'm treating this right. I decided to stop being so ignorant about my health and ignore what my family says and just do it all on my own. Needless to say, since my family is just eager for me to stop being so tired all the time but isn't very supportive, I feel kinda alone dealing with this. My boyfriend is supportive, but he doesn't really know what's going on with me or understands what hypothyroidism or PCOS is, lol.

Thank you to anyone who reads this and replies! Any help or support would be very much appreciated

-Layla

GodsLittleFlower · 05-08-2008, 08:40 PM

Hello Newbie!

I am a Newbie to! I ws just diagnosed today after a long time of being told I was crazy!!!! You are not crazy either and you deserve respect and compassion for your feeling both mentally and physically. I would suggest discussing everything you posted here with a doctor, new or otherwise, and don't take no for an answer. That's finally what I had to do and now I have a diagnosis and I'm having the proper tests run. Have a vaginal ultrasound all a whole battery of blood work up done. That should get the ball rolling. Also, have them check your vitamin D and iron levels. Mine were both low.

I can't stress how important it is to make your concerns known and to make the doctors understand where you are coming from. They are there to serve you, not the other way around. I have been trying to get a diagnosis for 4 years and I finally got tired of all of them telling me my symptoms were because I was "fat and lazy". I actually got up and walked out of an appointment because a doctor shamed me about my weight and my "make' believe" symptoms!

Hang in there and respect and honor your body. Something is wrong and your body is trying to get you to listen to it the only way it knows how. Listen to your body and spirit and don't take "No" for an answer! You are beautiful, lovely and divinely inspired just the way you are. Honor that and the rest will follow! Be blessed!!!

Eva37 · 05-09-2008, 07:31 AM

welcome to sc ladies

there is a link to the newbie roadmap in my siggie for you
eva

zdaisy7131 · 05-09-2008, 10:02 AM

Hi I'm new here too and just want to say " don't give up!" and I'm so sorry you have had to go through all that you have. Don't settle for any Dr. keep looking until you find one who will really do the research and treat you the way you need. I've been on this road for 13yrs and found alot of it is trial by error. I too had bad experience with Met. I'm going the natural route for now and it seems to be working for me. GOOD LUCK TO YOU!

CathyJ · 05-09-2008, 11:11 AM

I am so sorry you are going through this,,,I have been dealing with drs for many years who don't seem to know what they are doing and telling me I am crazy! However, the one that has helped me the most knew I had PCOS and IR by taking one look at me! Of course he confirmed it with blood tests, but I think he really knew what he was doing. He has me on several medications right now, but I feel better than I ever have on any combination of medications for this!

Just hang in there, and eventually you will come across the right doctor! Welcome to SoulCysters, and GOOD LUCK!!!!

Layla217 · 05-13-2008, 09:22 PM

Thank you all so much for your responses!

cynthiabandallas · 05-14-2008, 10:15 AM

hello - i am new to CS as well (just joined mon.) but can completely relate to your story. i went to (2) other doctors before i found my current dr. one dr took 1 look at me went over my Q&A worksheet & told me flat out, "i cannot do anything with you until you loose 25 lbs and u stop smoking!" then proceeded to schedule a follow-up for 6 months out, not to mention she sent me away with 2500 mg of met to be taken EVERYDAY! and well we all know what type of FUN side-effects can go along w/that. anyhow - going back to your story- don't walk away with any unanswered questions - Good luck - and I wish you well.

Layla217 · 05-19-2008, 02:08 PM

Update for anyone interested...

Okay - so I went to my new gynecologist today. She confirmed that I do have PCOS. Said that I'm on the verge of getting my period - since I took the pill for three months and just went off of it in April, she said that since I JUST went off it, my cycle is still normal and is preparing for a period already. (Last period was April 16). So she told me to start taking the birth control Yasmin again and renewed my prescription for a year. Had my first pap smear done, ickkkkk lol. So now I play the waiting game some more and wait for my period to come to start taking the pill.

I kinda feel defective now that she told me that having kids will be difficult when I'm ready...did anyone else feel like this? I know I'll get over it, I'm just super emotional right now after having my fear confirmed. At least I know it's not impossible to have kids, it just sucks to know that I'll have a hard time trying to conceive.

So, I am now officially a cyster, lol. I've been inspired and my diet and workout plan starts today. I need to be healthy!

ktbug8981 · 05-19-2008, 02:30 PM

Hi, I'm new here too! First I just want to say I know how you feel. I was diagnosed when I was 19 and it can be incredibly overwhelming at first. Try not to be freaked out by possible infertility issues just yet. You never know what can happen. One thing that can help increase chances of getting pregnant is losing weight. I lost 30 lbs before trying to get pregnant and trust me, I could have lost a lot more than that. I also took prenatals and Metformin. I know the met sucks at first. But I find if I keep taking it, eventually the side effects from it go away. That's just me. If you took it for so long and still felt bad, I don't blame you for stopping. It took me 6 months of trying to get pregnant. I consider myself very lucky because I know it does take some people a lot longer and they have to go through a lot more. Just try not to have any expectations at this point because absolutely anything can happen. Focus on being healthy. It's a daily struggle for me and I'm really trying to shed some more weight so I can be healthier.

Good luck!