Chapter 58: Meltdown

This summer has been so busy and updating this blog is always the first thing that gets neglected. The other thing was that I was in a good place with my endo. My day-to-day pain levels were fine, I was only getting my period every 3 months or so thanks to continuous birth control pills, and most importantly, I had a doctor here in Buffalo that believed my pain was real, had successfully done one surgery and was willing to do any other ones if I felt my symptoms returning. Life was as good as it can get for someone with endo. Until yesterday.

I'll preface this with a note saying I feel a little dramatic for being as upset as I am. But I think that it's warranted.... all of that medical gaslighting really messes with your head.

My birth control pill is prescribed by my endo surgeon, since he was the one that suggested that I go on the continuous pill post op to control my remaining symptoms. I called in a refill to my pharmacy over the weekend. Yesterday I went to go pick it up because I was completely out, and they said the doctor's office never called them back to authorize the refill. I called my surgeon, Dr. Ghomi's, office, only to find that he up and moved to Wayne, New Jersey. That's about 6 hours from Buffalo! They didn't send a letter, an email in the patient portal or anything else. The new doctor that took his place wouldn't refill my BC prescription without seeing me.

I asked the receptionist a few questions that I thought should have been pretty easy to answer. I was offered no answers. When was Dr. Ghomi going to let his patients know he was leaving? When they needed him to refill a prescription or called because their symptoms for a chronic incurable condition returned and they needed him? What is the new doctor's background? Is she an expert on deep excision for endometriosis patients? This is the current gold standard of care and any other methods of surgery can do more harm than good. She had no idea whether the new doctor had any endometriosis expertise. Her background on the website is a little.... suspect as well. I am skeptical. She's not on any of the endometriosis patient websites that I'm a member of. Let's just say... I have a lot of questions before I'd ever let her operate on me when the time comes... because it's pretty likely that it will come back again.

This lead to a pretty big spiral last night: Am I supposed to drive 3-4 to Cleveland or Pittsburgh if I need surgery again? Will my insurance cover out of state surgery? If it does, will I be up for 6-8 hours of driving to see a doctor pre and post op? What do I do the day of surgery? Stay at a hotel after? Maybe this new doctor is good enough? But what if she isn't? I thought Dr. Ghomi cared about my quality of life and well-being. He's obviously allowed to move but why the hell didn't I get a warning? What if whatever new doctor I find with the acceptable skill level doesn't believe my pain and I have to start this search all over again?

To say that I am struggling with this news is an understatement. I'm angry, scared, anxious and really, really pissed. Luckily, my OBGYN refilled my BC, but she was just as confused about the situation as I was, because she had referred a patient to Dr. Ghomi 2 weeks ago. I wish I could end this on some optimistic note, but I can't. Fingers crossed I can find a competent doctor who believes me again. Though in the world of endo, that's like finding a needle in a haystack.