O.M.G.!!!!! I'm PULLING MY HAIR OUT!!!

LLWinston44 · 10-13-2006, 09:50 PM

Hi,

I haven't been on in a while and I'm back today because I'm losing my mind! Just a synopsis since I'm fairly new and it HAS been a while since I was here.

My 13 year old daughter was just diagnosed with PCOS with Insulin Resistance.

Really it's a very long story, so I'll try to condense it. When she was 6 she started growing pubic and underarm hair. Concerned about precocious puberty, we went to the doctor who assured us she was fine and that kids are starting puberty sooner. They anticipated (based on a bone scan of the hand) that she would start her period around 9 or 10. That came and went with no period. At age 10 I wanted her screened for diabetes as my husbands mother is a diabetic. We went straight over for basic blood work (no fasting and such) and they said it was fine. Over the years, she had been putting on weight around her belly. All of her had weight, but primarily around her belly. I joined Weight Watchers about 2 years ago as my husband had high cholesterol and I wanted the family to eat better. I lost 60 lbs, and my husband lost, but my daughter not only didn't lose weight, but continued to gain.

I took her in to the doctor thinking something was going on, but no idea what. They ran blood work as well as an Ultrasound and confirmed PCOS. She has now been on 1000 mg of Metformin for about a month and a half, and her blood sugars are better as well as she's starting to lose weight.

The problem I'm having is that I canNOT find a doctor that knows anything about PCOS! Especially in teenage girls. Her pediatrician knows he knows little about it, so sent us to a pediatric endo. The endo, however, knows nothing as well! HE made it a weight issue, and that SHE needs to lose weight, eat less, exercise more, etc. He was disbelieving that we had been doing WW, as well as that I lost so much weight. He mentioned putting her on Birth Control Pills, which from all that I've read, makes the PCOS worse!! As well he said that she might not even HAVE PCOS but just needs to lose weight.......... ?

So I'm really stuck. I'm not sure where to take her for help. I can no longer go to UC Davis (which is where I asked the pedi to send her first) because since she's already seen an endo, they won't take her as they prioritize patients who have seen NO endo. I don't know if I should change endos, take her to an infertility doctor, or a gyno. I'm starting to doubt my own knowledge of PCOS because to ME it seems that I know more than these doctors..... and I know that's not supposed to be..

I'm at a loss, and so desperately want to find someone to help her. I don't want her to fall through the cracks. My family (both on mother and fathers side) is riddled with ovarian (and many more) cancers so for me, this is a real concern for her future.

I would so greatly appreciate any information, links and names that can help. I so desperately need it.

Thanks much,

Kim

M&M's Mommy · 10-13-2006, 10:10 PM

Hi Kim,
I can't give you a specific reference because I'm from Illinois but my experience has been that many doctors don't know how to treat PCOS outside of fertility issues, even specialists. I finally found a Reproductive Endocrinologist who told me that my symptoms are NOT all in my head. She treats women and teens. I would certainly look for an endocrinologist or reproductive endocrinologist who would see a young teen and who says that they "specialize" in PCOS. I hope that other cysters do come through with some references for you. Your daughter is certainly lucky to have a mother as persistent and determined as you!

Christy

OpalNera · 10-13-2006, 10:49 PM

God I wish my mum had been like you. When I started putting on weight in puberty she took me to the doctor who said it might be thyroid, tested it and when it came back clear was advised to put me on a low fat high carb diet (nice one).

Get her to another endo. Try looking around on the internet and support groups like this and find one that you know that specialises in PCOS and if you have to drive to another state or whatever just get her there.

Honestly at least she is on the Metformin. I can't get a GP to write me a script for that and have to wait until March to get into the endo.

I dont think BCP makes it worse for everyone does it? As long as its the right one? When I was on BCP it helped with my acne. I recently went off it and my hair has started to fall out a bit (no big deal as I have a LOT of hair anyway I'm happy to donate some of it to PCOS). She seems a bit young to go on it though, I've heard it can stunt growth.

You could also try her on chromium or cinnamon tablets. I hear people have been having a lot of success with that.

Anyway good luck with it all.

Scatterbunny · 10-14-2006, 01:19 AM

You sound like such a great mom. :o) As far as I've read, birth control pills are only bad for women with PCOS if the kind of progesterone they contain mimics testosterone (levenorgestol or something like that). I've been on a couple bcps that made me gain massive amounts of weight and broke my face out. Now I learned that bcps like Yasmin and Ortho Cyclen can be good treatment options for women with PCOS. I plan on going back on Metformin, back on a good bcp and hopefully on spironolactone to stop the unwanted hair growth.

I hope you are able to find a doctor who understands PCOS, or is at least willing to learn more about it.

MIKES JULIE · 10-14-2006, 04:33 AM

Sorry, I can't help you but I wanted to wish you and your daughter lots of luck and Tell you I think you are a great mom.

(((HUGS)))

Julie

Wendy M. · 10-14-2006, 04:39 AM

What state are you in?

camarofanatic90 · 10-14-2006, 04:50 AM

Like the cyster above, someone might beable to tell you about a dr or check out the dr forum.

Pocogirl2006 · 10-14-2006, 09:26 AM

Welcome i am Martina and i live in British Columbia Canada, i was diagonsed with PCOS on August 23 2006 and i have lot of other health conditions

MiracleMom · 10-14-2006, 12:13 PM

I can't help you much,but I hope that you find the help to get your daughter on the road to good health!
You are a wonderful Mom to be doing all of this for her!
Good Luck.

Allison. · 10-14-2006, 05:16 PM

Quote:

Originally Posted by LLWinston44

Hi,
My 13 year old daughter was just diagnosed with PCOS with Insulin Resistance.

She has now been on 1000 mg of Metformin for about a month and a half, and her blood sugars are better as well as she's starting to lose weight.

The problem I'm having is that I canNOT find a doctor that knows anything about PCOS! HE made it a weight issue, and that SHE needs to lose weight, eat less, exercise more, etc. He was disbelieving that we had been doing WW, as well as that I lost so much weight.

I don't know if I should change endos, ...it seems that I know more than these doctors..... and I know that's not supposed to be..
Thanks much,
Kim

I am so glad that she is on Metformin. This will help tremendously. Make sure she sticks with it. I am not Diabetic or Insulin Resistant ,but the Metformin has helped most of the symptoms.
Has she had her Testosterone levels checked??? This is primarily what caused my rapid unexplained weight gains. The Metformin will lower it. BCP didn't help, just masked the symptoms. Metformin will help control the true underlying symptoms. (Go to the Metfomin forum on read through the top stickies.
FAQ About Metformin)
Appeal your insurance or whoever you have to. You have a right to a second opinion. I changed Endocrinologist, after three years.
You are probably right about knowing more than your Doctors. Some get upset if we seem to know too much. That is when it is time to move on.
Your daughter is very blessed to have a Mommy like you.

LLWinston44 · 10-15-2006, 10:00 PM

Quote:

Originally Posted by M&M's Mommy

Hi Kim,
I can't give you a specific reference because I'm from Illinois but my experience has been that many doctors don't know how to treat PCOS outside of fertility issues, even specialists. I finally found a Reproductive Endocrinologist who told me that my symptoms are NOT all in my head. She treats women and teens. I would certainly look for an endocrinologist or reproductive endocrinologist who would see a young teen and who says that they "specialize" in PCOS. I hope that other cysters do come through with some references for you. Your daughter is certainly lucky to have a mother as persistent and determined as you!

Christy

Hi,

Yes, that is precicely what I'm finding. The there are doctors to treat it in the capacity of trying to concieve. However, I'm not looking for that. I want her treated with the long term being the focus. Thanks for the kind words!!!!

LLWinston44 · 10-15-2006, 10:07 PM

Quote:

Originally Posted by OpalNera

Get her to another endo. Try looking around on the internet and support groups like this and find one that you know that specialises in PCOS and if you have to drive to another state or whatever just get her there.

Funny you say that. I've JUST TODAY found a doctor (randomly sending e-mails to any doctor who even seems to specialize in PCOS) who is about 100+ miles away. She replied to my e-mail that she would be glad to see my daughter. I looked up her webpage and she specializes in PCOS AND is conducting research on teens with it!!! They have this program for it. (http://www.ucsfpcos.org/) and I'm praying it's something we can do! I have to get the referral from her doc first.

LLWinston44 · 10-15-2006, 10:08 PM

Quote:

Originally Posted by Scatterbunny

You sound like such a great mom. :o) As far as I've read, birth control pills are only bad for women with PCOS if the kind of progesterone they contain mimics testosterone (levenorgestol or something like that). I've been on a couple bcps that made me gain massive amounts of weight and broke my face out. Now I learned that bcps like Yasmin and Ortho Cyclen can be good treatment options for women with PCOS. I plan on going back on Metformin, back on a good bcp and hopefully on spironolactone to stop the unwanted hair growth.

I hope you are able to find a doctor who understands PCOS, or is at least willing to learn more about it.

Oh I didn't realize that!!!!!! I'll have to find out what he had planned to use then. What is the purpose of the BCP??

LLWinston44 · 10-15-2006, 10:09 PM

Quote:

Originally Posted by Wendy M.

What state are you in?

Northern California. Sacramento to be specific.

LLWinston44 · 10-15-2006, 10:11 PM

Quote:

Originally Posted by Allison.

I am so glad that she is on Metformin. This will help tremendously. Make sure she sticks with it. I am not Diabetic or Insulin Resistant ,but the Metformin has helped most of the symptoms.
Has she had her Testosterone levels checked??? This is primarily what caused my rapid unexplained weight gains. The Metformin will lower it. BCP didn't help, just masked the symptoms. Metformin will help control the true underlying symptoms. (Go to the Metfomin forum on read through the top stickies.
FAQ About Metformin)
Appeal your insurance or whoever you have to. You have a right to a second opinion. I changed Endocrinologist, after three years.
You are probably right about knowing more than your Doctors. Some get upset if we seem to know too much. That is when it is time to move on.
Your daughter is very blessed to have a Mommy like you.

No, she hasn't yet had them checked, though she's to have bloodwork next week and that is included. All of this is so incredible.... that something so 'big' can be so undertreated.... mistreated and just not given the speciality that it deserves.

Thanks for the link!