When Specialists Do Not Follow Through
I would say that over the last year, I have had some serious struggles when it has come to a specialist and treatment of my stage four endometriosis. I have seen the same specialist since about 2006, until he decided to retire on me. Since then, I have written an article about Losing My Endometriosis Specialist and an article about The Struggle to Find a New Specialist. There are a lot of gynecologists out there but not everyone is a specialist when it comes to endometriosis. Even fewer of these doctors are willing to do surgery on individuals like me, who they know will be an extremely complicated case.
I was able to contact my retired specialist for a referral because my endometriosis was starting to act up again. I am under the impression that my body decided it has become slightly tolerant to the current doses that I am on in regard to my medications. The first time I saw the new doctor, he seemed wonderful and so much like my doctor who retired on me. He considered my history and understood that we were truly running out of options. We did a 3d/4d ultrasound, just to make sure that there were no cysts or anything along those lines, but he said we would do a hysterectomy this year. My next appointment with him, he reaffirmed that we would be doing a hysterectomy and explained the approach he would take instead of the laparoscopic approach. At this time, he changed my estradiol patch from 0.1 mg twice a week to 0.025 mg twice a week. This small change amplified my pain exponentially, but the specialist said it was to prepare me for the hysterectomy.
But, of course...
Despite all of this, when it came to schedule the surgery, I kept getting put off. Eventually, the office informed me he did not have the time to do the surgery. He tried to tell me that he had spoken to another specialist that he knew and that would be even more qualified to do my surgery. When speaking to him, he had told me they already spoke about my case, but when I called the new specialist’s office they would not even consider making an appointment for me for three months, much less discuss the surgery.
Back to my retired doctor
I had to reach back out to him for another referral. Now tomorrow, I will have to call the new referral and pray that unlike these other specialists, this doctor can can get me in and also get me scheduled for the surgery sooner rather than later. Way sooner.
Unfortunately, I have that unnerving feeling of knowing I do not have a specialist to call my own and rely on right now. For somebody who has been struggling with stage four endometriosis for so many years, it is a very stressful feeling. It does not help when the pain is unusually high, and none of my other specialists or even primary care will do anything to help with the pain, because the specifically want a gynecological specialist to handle those issues. So I am back to struggling to find another specialist. I definitely have had these kinds of issues since back in the day, when doctors did not want to admit that teenagers could have endometriosis.
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