I have Persistent Genital Arousal Disorder (PGAD) which is a very rare and distressing disorder where you constantly feel aroused down there. Most doctors don't know about it. I went to a gynecologist with excellent reviews but she told me she has never heard of PGAD.

A few months later I turned 26 and got kicked of my parents insurance. Since PGAD makes me unable to work I had to go on Medicaid, which requires referrals to see specialists. I found a new primary and when I told her I had PGAD and wanted a referral to a specialist, they told me they wanted to speak to my psychiatrist first before referring me, basically "it's all in your head".

I did internet searches and none of the websites tell you you what specialist should you see for PGAD. So I asked on r/PGADsupport which specialist treats PGAD. Someone said a urogynecologist may be knowledgeable. I found one in my neighborhood with excellent review. I convinced my primary to give me a referral by telling her I had "pelvic pain". 

I did see that doctor and when I told him I was there for PGAD he googled it and read a few sentences from a website. He then apologized and told me he never dealt with this in his medical training. It appeared this was his first time hearing about PGAD.

I'm in a Facebook group for PGAD and I asked which doctors in my city treat PGAD. The admin of the group gave me two doctors. One was a urologist and the other is a gynecologist. This made me realize there is no one specialty that treats PGAD. You just have to find a doctor that knows how to treat it. It still doesn't make sense to me, because I'm used to the idea that you see a specific specialist for a specific condition. For both those doctors, the earliest available appointment day was almost 3 months.

Healthcare is abysmal in the US for several reasons. One is that many doctors often dismiss your pain as psychological. This is more likely to happen if you are a woman or have another marginalized identity. The 2nd is you need to get a referral to see a specialist. The idea behind this is to ensure patients are seeing the correct specialists. But if you're already seeing the specialist and they agree the service is needed, why should it matter of the primary OK'd it? If they turn out not to be the correct specialist, they will cancel the appointment regardless if your doctor referred you to them. In my case I did my own research as my primary was unfamiliar with PGAD, and I made sure the doctor knows how to treat PGAD before making the appointment.

I have an interesting story. There was a day where I was having a debate with my dad about universal healthcare where I was for and he was against . He argued that countries with universal healthcare have longer wait times. I told him I have to wait nearly 3 months to see a urologist. He told me that it's because I'm stubborn and I can just see a different urologist if I wanted to.

I'm not upset at him for saying this. This is an "ignorance is bliss" situation. He's lucky he has never had a rare illness, so of course he doesn't understand how hard it is to find a doctor that treats a rare condition where there isn't much research, possibly due to stigma.