Not every specialist can handle every problem

Me: “Do any of your practitioners specialize in PCOS?”
Receptionist: “Any of our ob/gyns can work with that.”
Me: “Ok, but do any of them specialize in it?”
Receptionist: “No, but they’ve all seen patients PCOS.”

I had this conversation earlier this week, but I can’t even count how many times I’ve had versions of this same interaction. Why do offices just not understand that “we’ve worked with patients with X condition” is not at all the same as specializing in it? This would be like asking, “Do you specialize in brain injuries?” and being told, “Yes, we have patients with brains.” No, not the same thing.

I am so frustrated right now. Two of my main practitioners have recently left. One retired and the other left suddenly due to a family emergency. Between the two of them, they treated my thyroid issues, my adrenal issues, and my PCOS. They treated all of my most active conditions except for the sleep apnea. And now they are both gone. They worked in the same practice, a practice that is no longer as big and robust as it once was.

When I first began there 7 or 8 years ago, there were many practitioners to choose from. I went there because of the doctor who was recommended to me by several people for his thyroid disease treatments. He referred me to the other for my PCOS issues. But now there are few practitioners remaining, the ones who are there just don’t have the approach that I need. What made this practice so special is that they focused on integrative medicine. Integrative medicine combines conventional medicine and complementary medicine. For example, look at my adrenal issues. Conventional medicine says that I don’t need any treatment. Without treatment, I can barely function. Conventional medicine says that I should treat the problem with dietary and lifestyle changes, plus supplements. I tried this approach for years and had some improvement, but not enough, and was really struggling. With an integrative medicine approach, I’m taking medication that has given me back my life. Do I have the energy and health of others my age? No, I do not. But I’m doing a hell of a lot better than I had been without the medication!

Unfortunately, I keep running into roadblocks. There are fewer and fewer integrative medicine doctors around my area who take my health insurance. Many take insurance, but only private insurance. I’m on Medicare (federal health insurance) and Medicaid (state health insurance that mostly covers the things that Medicare does not.) Many don’t take Medicare and of the ones that do, they don’t take Medicaid. I’ve thought about paying out of pocket, but that would get very expensive, and I don’t know if I should attempt that. This week someone suggested that it might be worth it for me to pay for a private secondary insurance, but the enrollment period ends next week and I’m trying to research my options, but I haven’t made much progress.

I know the local hospitals will take my insurance, but they usually stick with conventional medicine and that just won’t work for me. But you never know, right? So fine, I set up an appointment at the office I mentioned at the start. Then I Googled the person I was supposed to see. I found her online easily enough.

Her specialties: cardiovascular issues and high-risk obstetrics.

My need: I haven’t gotten my period in quite a while and need someone to order an ultrasound to check my uterine lining. If it’s too thick, then we need to figure out how to induce my period without messing up any of my other hormones.

Any doctor can (and hopefully would!) order the ultrasound, but how would they induce my period? In my experience, they would prescribe birth control pills. That has disaster written all over it. I need someone with a lot of experience in this area. Is it possible the person whose specialties are cardiovascular issues and high-risk obstetrics can help me? Sure. But is it likely? I highly doubt it.

I cancelled the appointment and will go back to making phone calls. Finding a practitioner to treat my PCOS isn’t nearly as urgent as finding one to treat my thyroid and adrenal issues, but it should be easier, and I’m hoping that whoever I find for one issue my recommend practitioners to treat the others. I just hope they take my insurance.

Note: I am writing about this fairly calmly, but in truth I’m very upset. I have spent a lot of time stressing, crying, researching, and crying some more. I’m terrified that I won’t be able to find anyway. It feels as those my options have shrunk a lot in recent years, and I’m worried about that trend continuing. Maybe another day I’ll write about the emotional side of all of this. For now, I just wanted to discuss that it’s happening in general.

4 Responses to Not every specialist can handle every problem

  1. Lorna says:

    I really feel for you. It’s so devastating that you’ve lost two good doctors. I remember how long it took you to get sorted out. I hope and pray you find someone.
    Here in the UK, it’s different. First person you see when you’re ill with anything is a General Practitioner at the Drs practice you are with. They can schedule tests, scans etc to find out if it something they can treat. If not you get referred to your local hospital to see the relevant department. If you have something rare or difficult to treat. You might be sent to a specialist hospital and Dr. There is private practice which is similar to you. You find someone who treats your disease and pay. My youngest son has a highly paid job in London and gets private health insurance.
    Gentle hugs sweetie xx

    • chronicrants says:

      Thanks, I appreciate your understanding and support. It’s great that your son can get private health insurance. It bothers me so much, though, that the quality of care we get depends on our financial status. For the quality of cars, clothes, and other extras that makes sense, but for healthcare? Our systems are so messed up (though some more than others.)

  2. Karen J says:

    Whoa! That IS a lot of things to sort out, CR.
    I send you all the Good Doctor Hunting Juju you can use!

    • chronicrants says:

      Thanks so much. Yeah, it’s a lot, and it’s stressful and exhausting. Today I made an appointment with someone that’s not covered by one of my insurances, but it’s worth paying out of pocket if he’s good. I just hope he’s good! I’ll find out in a couple of months.

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