Had symptoms for years... still not fully diagnosed

[nat-]

Hello, my name is Natasha and I'm 16 years old.

I've had symptoms of PCOS since I was about 12~13. My mom took me to a doctor when I was 13 because she was concerned by the amount of hair I had, my acne, and how I'd go months without a period. The doctor was very rude and told my mom I only had these problems because I was fat. A few months later I was in the ER because a cyst ruptured on my ovaries. The OBGYN doctor told me it was possible that I had PCOS, but I was too young to diagnose.

A few months ago I was very hurt by some things my classmates were saying about hairy women, and my mom took me to the doctor again. This one actually took blood tests unlike the other ones and confirmed that I had higher testosterone levels and most likely had PCOS. The only problem is I refuse to have a vaginal ultrasound, which is what he really wants to confirm it. I've been on metformin and a birth control that had worked so far for a little over one month.

I joined soulcysters in hope of getting support from people who understand what I'm going through rather than my mom or online friends who don't really quite understand it. (I haven't had enough courage to tell any of my really good friends from school because teenagers are really immature when it comes to these type of things.) I'm really self conscious and get really depressed when it comes to things about my body, and I think because of PCOS it's going to be even harder to be happier about myself.

That was probably too long, sorry >.<

[mcruz09]

I had the same problem. I had constant symptoms always went to see my doctor and she always expressed herself as, "Is normal." I eventually felt something was wrong, but yet i kept in mind that everything was normal. I went years without being dx and now at 24 i get this from my doctor, "you have PCOS."

[defygravity]

Not too long, don't worry. Some of us write novels for posts.

16 is a really tough time, and it's tougher with something like this. The best thing is that now you know what's causing all the havoc in your body, and with the support of a good doctor you'll be able have many symptoms treated. I don't believe it ever fully goes away, but keeping the symptoms under control works well too. Metformin and birth control pills are a good treatment protocol for someone your age. Try to minimize the amount of junk food you eat, and try to stick to healthy whole foods. I know that you're probably not in control of the food shopping in your house, but you might want to talk to your parents about cutting back on anything that they buy. It's hard and it sucks sometimes but the effort now to start healthy eating habits will benefit you best in the long run. If you can get some walks in, that's a good idea too. Diet and exercise are key to keeping symptoms in check. It sounds like your parents are very supportive of ensuring you get the support you need, and that's awesome. A transvaginal ultrasound is probably not required to be diagnosed, because despite being called "PCOS" some women have no cysts at all. Is there a reason you're resistant? I will admit they're uncomfortable, but on the whole they tend to be over quickly and are not nearly as embarrassing as you'd think. In fact, it's kind of impersonal. Please feel free to ask all the questions you want/need here. We're here for support!

mcruz09 - doctors can be really frustrating, and some of them are very resistant to evaluating for PCOS. Are you currently seeing an OB/GYN or a GP?

[Ashleigh B.]

@defygravity i was wonderin can they find out if you have cyst with a regular ultrasound?? i really dont care either way i am just curious

[smokeymtngirl]

Sometimes it takes a while to get diagnosed. It took me about 10 years from the time I heard of PCOS until I was finally diagnosed, and I had had symptoms for several years before I was aware there was such a thing. Everyone just wanted to give me birth control and put me on a diet. Finding the right doctor is key.

An ultrasound might or might not show anything. When I had mine done, they couldn't even find my ovaries, much less see if I had any cysts. It freaked me out until the doctor told me it's normal in women who are overweight. If you're not comfortable with your doctor doing the ultrasound because he's male, you can ask for a female to perform it. I'm not comfortable with a man other than my husband around those parts so I see a female gyno, but when she sent me to the hospital for my ultrasound, I specifically asked for (and received) a female ultrasound tech.

The Metformin and birth control should help. I was on birth control before I was diagnosed because of my irregular cycles. It regulated my cycle, kept the acne away and prevented hair loss. It didn't do anything for the excess hair other than keep it from getting worse. Metformin helped with the symptoms and made it easier to lose weight.

I find I do best when eating low-carb and making sure the carbs I do choose are healthier ones (whole grains). You don't have to deprive yourself, just look for healthier substitutions. You might want to consider a good quality multivitamin as well. Women with PCOS are often deficient in certain vitamins and minerals. Add in some exercise a few days a week. It doesn't have to be anything major; something as simple as a walk around the block in the evening can help.

Changing your diet and starting an exercise program can seem overwhelming, especially on top of dealing with everything else, but just take things slow and work your way up to it. You don't have to do everything perfect right away. Pick one thing to focus on and once you have it down pat, add something else to the mix. I'm a big fan of SparkPeople for losing weight. It's free and has trackers for nutrition, fitness and other goals, as well as a great community.

Yeah, I'm one of the novel-writers defygravity mentioned.

[defygravity]

Novel writers welcome! I have a few here and there too - I usually write all over the place and then edit before I post, if I didn't I wouldn't be able to write a post less than 1,000 words!

Ashleigh, no, not really. Unless the cysts are huge (and I mean, like, orange sized+) they won't be able to see anything. Your ovaries are pretty deep in your body.

Even if/when you decide to get pregnant, the very early ultrasounds tend to be transvaginal because they just can't see anything. I'm TTC, and I get 2 ultrasounds each month, minimum. Like I said, they're not pleasant, but they're not exactly painful and it's not really personal. I do have a female ultrasound tech (although I see a male RE) and she's very friendly and very professional. There's always a sheet draped over my lower half, and the tech never actually looks up it - she sits next to me with her arm looped in front of my leg (my knee rests against her body). I lie on my back and count the holes in the ceiling tiles - it takes less than 10 minutes. Frankly, the most uncomfortable part is my husband leaning over my body to see the screen. I stopped being embarrassed about it because I know that whenever I do get pregnant there's all kinds of grossness that comes with it, and when I give birth it'll be a messy business. Also, gynecologists see all kinds of ladybits every day and while I have PCOS I don't have many of the more unpleasant things they see, so I "display with pride" when needed. However I do admit that the first one or two involved quite a bit of bravado, and it does take some time to get over body modesty especially when weight is a factor.

Smokeymtngirl - occasionally one of mine hides, it's usually the right side. I have to press down to get it to show up on the screen. The sucky part is that I usually have the best response to meds on the right side.

[Diane92]

I don't think transvaginal ultrasounds hurt, I had one once and I barely felt it, just a weird pressure. They put too much lube on it I think that's why. lol But I was scared to do it, so I can understand. The thing is, my ultrasound came back great, but I have either irregular periods or no periods, so if they went by ultrasound, then a lot of women wouldn't even be diagnosed. It has more to do with blood work. The high testosterone could be treated with birth control, met, or spiro, that will help. I'm sure your symptoms will go away after a bit, and when you're ready, you can do the ultrasound. They have to treat you no matter what, high testosterone is what's causing it most likely.

[Santino]

I think traditional Chinese medicine and acupuncture can help. Go to find a registered Chinese medicine practitioner.

[leahbear]

They found cysts on my ovaries with a regular pelvic ultrasound. I just had to pull my pants down a little bit. I'm in Canada though, we probably do things differently up here.

[defygravity]

They found cysts on my ovaries with a regular pelvic ultrasound. I just had to pull my pants down a little bit. I'm in Canada though, we probably do things differently up here.

How large were your cysts? Just curious.