Just Diagnosed...and Miserable.

Ratsicles · 06-02-2007, 07:54 AM

Hi all. I'm really glad I found this forum...it seems like this is a really informative place.

My name is Brittany- I just turned 20, and I was diagnosed with PCOS a couple of weeks ago.

I suspected that I had PCOS for years through my own research- but given my age, no doctor would listen to me- they constantly brushed it off even though I had SO many of the symptoms- they just told me that all of my problems were due to my weight and would go away with diet and exercise.

The truth is, I started gaining weight when I was about 8. I was an INSANELY active little kid- I ran around outside constantly, and didn't overeat. I was a skinny kid, and then all of a sudden I completely balooned. My parents had no clue what was going on, and the doctor insisted that it was just a "pahse," or that I was secretly overeating. I wasn't.

I have continued to gain weight throughout my life. At my largest I was nearly 310- right now I'm at about 290. Even eating a VERY carefuly planned diet and exercising regularly, I could never lose more than about 20 pounds. After those 20 pounds go away, I just stop- I can exercise constantly for months and STILL gain.

I was also horribly depressed...which also went undiagnosed and was simply dismissed as normal teenage angst. It wasn't and I still struggle with clinical depression today- I'm not on medication for it. I've taken both Zoloft and Paxil and neither did anything for me (the took away my horrible paranoia, but I was still miserable.)

I have MAJOR hair growth- if I don't shave my chin daily I have visible stubble within 12 hours. When I was little I had a super thick head of hair- since I was a young teengaer, it's become thin and brittle and falls out in clumps.

And my periods have NEVER been normal- I bleed constantly, but never have a real period. I've been bleeding for the past few years now, with only the occasional day or two of stopping. It ranges from just spotting to light bleeding- never any clotting. Come to find out, I we never having an ACTUAL period- the endometrial lining was never actually able to shed and had built up for quite a while.

So like I said, I tried from the time I was 13 to get a diagnoses. Doctors would never listen, never even consider it, and eventually I quit going.

I got married last July. My husband, who is awesome, finally convinced me to see a doctor again after not going for years. He's military (getting out in January), and unfortunately, all I have access to are military doctors for the moment. They were (as military doctors tend to be in my experience) horribly rude and dismissive to me at first. I decided that this time I WAS going to get my diagnoses and INSIST that I get an ultrasound and a whole battery of tests.

Surprise surprise, I was right. I have PCOS.

I don't have actual cysts on my ovaries, but I am insulin resistant. They started me on Metformin, a 10 day course of Provera to make me have a period, and then Yasmin.

This is where the problems begin.

Taking Provera was honestly the worst thing that has ever happened to me. I was CRIPPLED with cramps that felt like contractions. It felt like someone was tying my organs in knots and ripping them apart. I have a high pain tolerance, and was still in tears almost constantly. It also made me pretty much hell to live with- I was screaming at my husband, screaming at our pets, and then 10 minutes later I was crying like a baby and apologizing. I was nauseated from the pain and vomited constantly. It also caused terrible depression...I've always been depressed to an extent, but this was scary. It was to the point where terrible suicidal thoughts continuously popped into my head.

Nevertheless I stuck it out, knowing that I *needed* to have a real period. Well, I didn't. I finished the course on Monday and have a *slightly* heavier flow than normal, but still no clotting, still not a real period. I called the doctor, and she said to just go ahead and start on the Yasmin, and that I'd probably have a period within a couple of weeks of starting it.

I just hate that I went through that hell for nothing- Provera is awful.

And now I'm having problems with the Yasmin. I'm not having mood swings. I am having some mild cramping, but it's nothing after what I went through with the Provera. What's getting me is the nausea.

It's making me INSANELY hungry- I am having constant hunger pains. But at the same time, I'm super nauseated and the thought of food just about kills me. I'm having to force myself to eat, and then I usually puke it back up within a few hours. I've been having to carry puke bags around with me wherever I go, just in case. It's awful. I can't sleep, but I'm constantly tired. I am exhausted from being this horribly sick non stop for over 2 weeks now.

What's bothering me is this- I've heard alot of negative things about PCOS and BCP...and I'm starting to wonder if me taking the Yasmin is even worth the horrible side effects. I'm on Metformin, and from what I'm reading, isn't that really enough? I'm not totally sure...but god, I just can't stand feeling this bad all the time. It's totally not worth it to me...if I have to choose between not being treated for PCOS and feeling this way all of the time...I think I'd choose not being treated.

I have a zillion pets, and a house to take care of. I haven't been able to do any of my normal stuff since my diagnoses. I just want to be able to function again.

want2beAmum · 06-02-2007, 08:06 AM

i feel your pain....im very similar to your situation, but i dont have many periods at all, but i have the moods,depression, hair, weight....
You have come to a great site, these girls are great!!!! good luck!

diana0624 · 06-02-2007, 04:55 PM

Welcome to SC. I totally disagree with BCP as a PCOS treatment. However, in some cases it's a good idea for a limited time (like 3 months or so) just to kinda get your body somewhat normal. At the same time, taking the metformin (the real PCOS treatment). All the nausea could be caused from the metformin. What dose are you on? It can take some time to adjust. It's super important to eat low carb (and low bad fats too). This will help with the nausea. When you are first on metformin, it usually makes people really tired too. I'd try to stick with the metformin. As for the BCP..it's really up to you. If I were you, I'd try to stick it out for about 3 months and see how things go. Also, talk to your doctors. They need to know what you are going through. Good luck.

LizardBeebop · 06-02-2007, 05:21 PM

I stopped taking my BC because it made me crazy like you're describing. I just recently started taking 1000mg/day of Metformin, but that makes me sick... I wonder if some of the symptoms you are describing are from that? I've been looking around on here to see if anyone else has had a reaction to it like I have. I'm still adjusting. I hope you feel better soon! It's no fun

stellarnix · 06-02-2007, 11:47 PM

Metformin will make you sick the first week or so. It helps to eat about 20 minutes before you take it. Something light(I did best w/1 piece of wheat bread w/peanut butter). I also tried to take it about 2hrs before bed, sleep thru the worst of the nausea. Please dont give up on treatment altogether. It can get better Take care.

Eva37 · 06-03-2007, 09:16 AM

welcome to sc

you will love it here
eva

SnowFlower · 06-03-2007, 11:48 AM

Welcome!!

heather090702 · 06-03-2007, 12:51 PM

I agree with the other girls about the Met. It can make you feel terrible. It took me almost an entire year to feel normal with my met, but then I felt great! I lost 20 pounds without trying. My moods were up. I got pregnant. How much are you taking? It should be a slow build up. Also, I did MUCH better with Metformin ER which is the extended release version. I could take it at night and I slept through most of the potential side effects.

As for the BCP's...every woman is different. I have luck with my BCP which is Ortho Novum 7/7/7. When I went off it because I believed it was bad for PCOS, I gained serious weight. I think that it has its benefits for some and it really can be trial and error to find the right one.

I am proud of you for sticking it out and forcing a diagnosis. I had to do the same thing. Now, be just as insistent with your treatment. It does get better.

If you ever need to talk then this is the place to be. If you need anything, then please feel free to contact me.

Take care of yourself and remember that you are never alone in this.

tariana · 06-03-2007, 03:11 PM

Birth control pills are the only thing that make me feel reasonably human. I'm very much in the minority here as most other cysters HATE them. But everytime I go off them I feel TERRIBLE. I hope I never have to go off them again.

NurseJackie · 06-05-2007, 12:53 PM

Just wanted to say hello and welcome. I had pretty much the same exact symptoms as you, and it took until i was 30 and found all new dr's that i got someone to listen to me. Sorry to hear you are having so many problems with the medications-you may want to check out the medication threads to get some more info. Hope you're keeping in touch with your dr, and that you find the info and support you need here!

LessThanThree · 06-05-2007, 05:27 PM

Welcome to SC. I'm sorry to hear about all the troubles you're having, but hopefully you'll find a combination that works for you, soon. It really does sound like your side effects could be from the Met, not from the Yasmin.

I know how you feel about forcing the dx, too. I actually had a Dr about a year ago bring up the possibility of PCOS, take one vial of blood, and call back three days later to say that there's no way that's what it was. No recommendation or rx for an ultrasound or anything, just a "sometimes people don't get their period for a while. Take Provera." After 10 days of Provera, NOTHING. Now it's over a year since my last AF, and I'm on Provera again, this time rxed by my RE. I'm hoping it's more effective this time, so the side effects are worth it, although mine are nowhere near as severe as yours were! I'll be starting Met shortly, so we'll be on relatively the same time frame. Let me know if you need anything!

sandstar · 06-06-2007, 05:10 PM

I'm so sorry you are feeling so aweful. When I was on BCP before I had the IUD, I had the same nausea with a couple of types. It took a couple different ones before I found one that didnt' have the horrible nausea affect. If you aren't able to hold anything down, I would call in and ask to talk to a nurse (I know that the military can be tough, but you might actually get to talk to a nurse) and ask if there is something that can be done. Also vitamin B6 helps with nausea. You might give that a try and see if it helps. B Complex contains several B vitamins and I found B complex in liquid form that you drop under your tongue. It took me a while to get used to the Met, and I still haven't been able to get to the full 1500mg that my doc wants me on. I had to keep saltine crackers in my night stand and eat 3-4 of them before I even sat up in the morning in order not to get sick. HTH