Polycystic ovary syndrome

[Dr Steve]

Sooooooooooooooo I don't really like going to doctors.....and I probably should but maybe there are other ways other than birth control pills that require a prescription to get my hormone levels a little more normal.

I have high testosterone (I don't know the details of how high or anything like that) and I don't get periods...like at all. I used to get them once in a while but then they kinda just stopped coming. I have other things that happen due to my "condition" and I am kind of sick of dealing with it and it's embarrassing as well.

I was just wondering if there is anything I could take to get my hormone levels a little more normal that I don't need a prescription for because as I said I would rather not go to the doctor again for this.


Ok, there's a lot here...I'd like to know how they diagnosed you with a high testosterone level!

I wonder if you have "Polycystic Ovary Syndrome"...it causes problems with periods, infertility, weight gain, and...high male hormone levels.

The first thing to do is make the diagnosis. Amazingly, this is a problem of insulin insensitivity...a lot of people with PCOS will have high insulin levels and are at risk for diabetes.

If this is the correct diagnosis, you really need a health care provider to treat you. I would see an endocrinologist, or a GYN specialist with an interest in PCOS. This is a legitimate medical problem and I don't want you to be embarassed to talk to someone about it. It's totally treatable. In fact, someone very close to me has PCOS; I made the diagnosis and treated her and she now has two kids and is essentially symptom-free.

One of the things they will try to do is to decrease your insulin levels and increase your sensitivity to insulin. This can be done with one of several medications. There are certain birth control pills that are better suited for people with PCOS as well. You'll notice the inappropriate hair disappear, the weight drop off, and you'll feel better in general.

I'm making a LOT of assumptions here; let me know if I'm way off base and I'll start over.

your friend,



Steve

PS: one thing you can do on your own is to get on a "low glycemic index" diet. I recommend the "Sugarbusters" diet; you can get the book at Amazon.com and they sell the bread and stuff at http://www.cajungrocer.com.

hope this helps!

[Misteriosa]

i had a coworker tell me about this today. im glad to see that your close friend was able to have children after she was treated. i will def pass this info to my coworker next time i see her. the possibility of infertility was what had her most distraught.

[AngelAmy]

i had a coworker tell me about this today. im glad to see that your close friend was able to have children after she was treated. i will def pass this info to my coworker next time i see her. the possibility of infertility was what had her most distraught.

Thats definately one of the things I worry about every day.


--- They did blood tests for me trying to figure out my migraines and the high testosterone thing came up

--- I got a sonogram---(ultrasound i think is a better term, im not pregnant) type thing trying to figure out of I have PCOS but I have no cysts.

--- My doctor wanted me to go to an endocronologist and I called the one she reccommended but they didn't take my health insurance annnnnnnnnnnnd then I kind of just gave up because I pretty much get panic attacks calling people.

--- She tested my insulin levels since when I went to her I was (and still am) over weight so she just wanted to be sure I didn't have diabetes....she said they were ok but this was years ago so things could have changed.


I pretty much figured I had to go to an endoblahblaholist so I will have to work on that so I can finally do this for myself because I have lived with this too long and lately my symptoms have gotten so much worse.

[Dr Steve]

i had a coworker tell me about this today. im glad to see that your close friend was able to have children after she was treated. i will def pass this info to my coworker next time i see her. the possibility of infertility was what had her most distraught.

Oh yes, it's definitely something that can be treated. Can't GUARANTEE pregnancy, but even in my practice I had some real success in treating this condition. Tell your friend that there's definitely hope!


your pal,


steve

[Dr Steve]

Thats definately one of the things I worry about every day.


--- They did blood tests for me trying to figure out my migraines and the high testosterone thing came up

--- I got a sonogram---(ultrasound i think is a better term, im not pregnant) type thing trying to figure out of I have PCOS but I have no cysts.


There is some disagreement among GYNs as to whether you can make the diagnosis of PCOS in a person who has no cysts. A lot of GYNs say "yes", because the cysts can sometimes go unrecognized by ultrasound. There are other things that can cause a high testosterone level other than PCOS (like Cushing syndrome), it's just the most likely (because it's relatively common). I do think an endocrinologist appointment would make sense for you. An endo will be able to make the diagnosis quickly, and give you some strategies for treatment.

Here's what you do: call your Primary Care provider and say "I'm ready to try that endocrinologist appointment you suggested. I NEED YOU TO FIND ME ONE THAT TAKES MY INSURANCE..." Your PCP should have staff that can do the legwork for you...you shouldn't have to call these places yourself to find someone.

good luck and let us know how it turns out!


your friend,


Steve

[Thebazile78]

There is some disagreement among GYNs as to whether you can make the diagnosis of PCOS in a person who has no cysts. A lot of GYNs say "yes", because the cysts can sometimes go unrecognized by ultrasound. There are other things that can cause a high testosterone level other than PCOS (like Cushing syndrome), it's just the most likely (because it's relatively common). I do think an endocrinologist appointment would make sense for you. An endo will be able to make the diagnosis quickly, and give you some strategies for treatment.

Here's what you do: call your Primary Care provider and say "I'm ready to try that endocrinologist appointment you suggested. I NEED YOU TO FIND ME ONE THAT TAKES MY INSURANCE..." Your PCP should have staff that can do the legwork for you...you shouldn't have to call these places yourself to find someone.

good luck and let us know how it turns out!


your friend,


Steve

Why can't you do a DocFind from your insurance's website and take that to your Primary to compare it with their list of referrals? Wouldn't that save time?

[Dr Steve]

Why can't you do a DocFind from your insurance's website and take that to your Primary to compare it with their list of referrals? Wouldn't that save time?

she could, and it would definitely save time. from her original post, it sounded like they just said "here you go, have fun, go find yourself an endocrinologist"...I hate when that happens; customer service is a really important part of medicine. It's just my opinion, but after all this time her primary could step up and help her find a doctor that will see her. You're just nicer than I am. :-)

[Thebazile78]

she could, and it would definitely save time. from her original post, it sounded like they just said "here you go, have fun, go find yourself an endocrinologist"...I hate when that happens; customer service is a really important part of medicine. It's just my opinion, but after all this time her primary could step up and help her find a doctor that will see her. You're just nicer than I am. :-)

Depends on where you go. Some doctors' staff won't walk you through things like that, mostly because they don't necessarily have the staff to spare. Some do. (In my experience, "Family Practices" will be better about sit-downs than other places.)

Some places, on the other hand, you have to bring your "homework" with you ... which is insulting for the doctor (they're supposed to be the expert, aren't they???) and taxing on the patient, so it strains the relationship.

p.s. - they probably did say "go find an endo yourself" (stinky, but true.)

[AngelAmy]

she gave me the name of the doctor she wanted me to see, i called to make the appointment, they said "we dont take cigna" even though my doctor's receptionist was supposed to have taken the doctor's name out of doctors in my health care but whatever....after that i just didnt do anything else.

when i went to her after that i told her that when i called they said they didnt take my health insurance and she said "i wanted you to go there to get a reason why you have high testosterone since they specialize in that" (or something to like that) but there was no finding another endo or anything after that.


and thats the last time ive been to the doctor.

edit: I did go to my healthcare website to search for them. I'll call to make an appointment next week.

[Thebazile78]

....
edit: I did go to my healthcare website to search for them. I'll call to make an appointment next week.

Good for you!

[stronger129]

HI,
I just wanted to say.. I was diagnosed with PCOS when I was about 22.. I stoped getting normal periods around 18..I am now 28 and I have a six month old son.. I did have to see an infertility doctor but was able to avoid invetro.. I did have to have a sono everyday for about a week after being on hormones to see when I was ovulating then we had insemination and luckily it worked the first time... if you get on this early..and follow the doctors advice..this will be okay....I did have gestational diabetes though and was on A LOT of insulin three times a day...I was taking over 100 units just at bed time..once you find a doctor you're comfortable with, Im sure things will start to fall into place.. Good Luck!!

EDIT: The main reason they did a sono to check for PCOS was because, well I wasnt getting a period but also b/c my testosterone level was high...and the first sono I had they only saw one cyst, I had a repeat done a month later and there were multiple cysts

[Dr Steve]

she gave me the name of the doctor she wanted me to see, i called to make the appointment, they said "we dont take cigna" even though my doctor's receptionist was supposed to have taken the doctor's name out of doctors in my health care but whatever....after that i just didnt do anything else.


yeah, what happens is some offices pick up and drop contracts faster than they print the books, so one that's shown as being in your network really isn't when you call to make the appointment



when i went to her after that i told her that when i called they said they didnt take my health insurance and she said "i wanted you to go there to get a reason why you have high testosterone since they specialize in that" (or something to like that) but there was no finding another endo or anything after that.



I really think that it's our responsibility to find a specialist that our patients can actually SEE. It's just part of the contract we have with our patients. It's too bad you're going to have to do some of the legwork yourself, but I'm glad to hear you're going to pursue this further.


and thats the last time ive been to the doctor.

And this is what happens. People get overwhelmed and give up, and get "lost to followup". Navigating this whole "we don't take your insurance" ocean is difficult. We have people in my office who do nothing but make referrals; I'm not bragging at all, it just seems like a requirement of doing business these days.


edit: I did go to my healthcare website to search for them. I'll call to make an appointment next week.

well, now you're talking. Having said all that I said above, it's really important that those of us who are health care consumers (and that's all of us, really) take matters into our own hands when things aren't getting done. Insist on excellence and customer service, and if you're not getting it, there are things like this that you can do yourself. I can help with some of those things (like getting your medications for free if you can't afford them).

I should just post a thread on a few of those things. I'll do it this week.


your friend,



steve