PCOS Treatment - Endos no longer treating PCOS??!

healthygirltx
healthygirltx Posts: 37 Member
edited October 4 in Motivation and Support
I got a call today from my endocrinologist's office today telling me that she will no longer treat my PCOS because the AMA or some other medical board has decided that PCOS is not a metabolic problem, it's a "reproductive problem" and I should follow up with my GYN or PCP. I literally burst into tears on the phone because I spent years trying to convince said GYN and PCP that I have all of the symptoms of PCOS with no luck. They would just tell me to lose weight. Except PCOS makes it very difficult to lose weight.

It's so hard to get diagnosed and now that I am, she will no longer treat my condition?! I'm wondering if any other ladies out there have been dropped by their endos and I'm wondering if this is coming down to an insurance reimbursement issue. I've had lots of problems getting my insurance to pay for my treatment because PCOS was being coded as infertility. So frustrating. It's very hard to find a doctor who even knows what PCOS is.

Replies

  • ♥_Ellybean_♥
    ♥_Ellybean_♥ Posts: 1,646 Member
    a regular Endo usually will not deal with PCOS as it can be controlled by a Gyno.. however if you are TTC see a Reproductive Endocrinologist they are focused on getting your pregnant with PCOS.
  • cassondraragan
    cassondraragan Posts: 233 Member
    I've never seen a regular endocrinologist for my PCOS. Was yours a Endocrinologist or a Reproductive Endocrinologist?? I went to mine b/c of PCOS symptoms. If yours was an RE then I am a little nervous.
  • sunkisses
    sunkisses Posts: 2,365 Member
    You do have to try harder at it, but losing weight actually does help. After a while your weight loss will become that of a normal person. Well, it did for me anyway. I also have a thyroid condition. I'm on the Pill, and it's treating the remaining symptoms of my PCOS. I wish you luck. You can do it!
  • xMidgetGemx
    xMidgetGemx Posts: 2
    Hello, Hun i have gone through the same thing. I am TTC with PCOS and i keep getting fobbed off with the 'lose the weight nd you should regulate your periods'

    I lost 10% of my body weight and regulated myself but still don't think i am ovulating :(

    I have been put ion weight loss tablets and they seem to help me lose more. Feel free to add me if you want x
  • catwrangler
    catwrangler Posts: 918 Member
    I didn't know PCOS could be treated. What do they do for it?
  • cassondraragan
    cassondraragan Posts: 233 Member
    Most of the time REs are also Gynocologists that pursued the RE specialty. I just googled Reproductive Endocrinologist in Austin Tx and tons came up. See if your Endo will refer you (most of the time you have to be referred, but your gyno might since you now have the Diagnosis of PCOS. Its in your records now, so that will help you. Most of the time you just need the official Dx from a Dr.)

    Its going to be okay. I know how you feel. Once I was diagnosed and treated, I felt tons lighter! (and now I am tons lighter!) Don't freak out yet :)
  • cassondraragan
    cassondraragan Posts: 233 Member
    Btw, I couldn't conceive until they started me on metformin. He started me on BC stating that when I was ready to TTC he'd take me off and it would help. I went off the BC and was pregnant within a month.
  • sesecat
    sesecat Posts: 124 Member
    My OBGYN actually referred me to the Endo when she suspected PCOS. Of course, all the tests, including ultrasounds on my ovaries, were positive, without doubt, to PCOS. And the Endo was my prescriber of the meds for the first year or so...

    But I later discovered that my PCP would handle my scripts, as well as annual tests on my hormone levels and he took over my care. Made it so much easier, less copays, etc.

    If your PCP or OBGYN don't want to treat for a confirmed condition, I suggest you change doctors.

    As for losing the weight, following the MFP plan has worked for me without any issues, and by following the recommended carbs on this site. However, it also requires lots of exercise on my part. I am on 2000 mg Metformin for the PCOS, and take the pills at bedtime. I've lost lost 58 lbs in 5 months.
  • sesecat
    sesecat Posts: 124 Member
    Btw, I couldn't conceive until they started me on metformin. He started me on BC stating that when I was ready to TTC he'd take me off and it would help. I went off the BC and was pregnant within a month.

    Same here! I was put on the pill for 2 years, lost weight, and got pregnant in about 2 1/2 months after I stopped the pill.
  • starrygirl82
    starrygirl82 Posts: 76 Member
    I don't have insurance anymore, so I'm not sure about this. But I was going to a OB/GYN doctor about my PCOS beforehand. I've noticed a lot of doctors don't seem to know much about this. It took years of having really bad symptoms before I was diagnosed. I actually ended up in the hospital for a blood transfusion before they finally decided to test me for it. I have trouble losing weight because of PCOS. Do they still prescribe you medicine for it?
  • healthygirltx
    healthygirltx Posts: 37 Member
    Thanks all for the support and suggestions. Let me also add that I have been seeing this endo for two years and I am on Metformin. She is a regular endo but one of her specialties is PCOS, which I is why I chose her in the first place. I saw her a month ago and she had me schedule another appointment and now all of a sudden I am being dropped and told to follow up with my GYN or PCP.
  • catwrangler
    catwrangler Posts: 918 Member
    I see, it was never an issue for me because I never cared about having children. I just enjoyed not having a period for most of my life and suffered with the excess hair and FAT.
  • CAlexRose
    CAlexRose Posts: 33 Member
    I was diagnosed with PCOS back in 2000. I was rapidly gaining weight and my periods stopped. After years of going to the doctors, eventually taking Metformin 2000mg/day (which did nothing), etc, I was finally able to lose the weight through a strict diet and exercise program. I haven't had an issue with my cycle in about 6 years now. If I gained the weight back, I think it would reverse itself.

    I still deal with acne, facial hair, etc, I also cant eat many sugars (try to keep it as low as possible), processed food, etc.
  • RuthRW
    RuthRW Posts: 247 Member
    My primary care physician diagnosed my PCOS, tested for it and has written all the scripts for my BCP and Metformin. Sorry you are having so many issues, if it's just a matter of the meds maybe that can be transferred to your PCP since you have been officially diagnosed.
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