Yesterday I had my big visit to Duke’s Center for Endometriosis Treatment & Research on the Durham campus. I was up a little after 5am and we were on the road at 6! My appointment was at 10am but we had to count in time for an early arrival for paperwork as well as dropping Abby off with her Pops and any traffic we may encounter.
We actually arrived early and got taken back early! A first for me and wait it gets better – the doctor actually came in early! No hate for my doctor as she is completely worth the wait but I was pleasantly surprised! Of course my excitement didn’t last long.
One of the first things he said after looking over my medical history was, “You’ve been to the CEC? They are trained me. If they can’t help you, I can’t help you.” Thanks buddy. Appreciate the encouragement. I tried really hard to fight back the tears. This was not what I was looking for.
He seemed shocked by the fact that my doctor found endo at my hysterectomy (which was just a year after my excision surgery at the CEC). I think he asked me four times if I was sure that it was endo. Yes, doctor, I am sure. He said that he won’t believe it until he sees the pathology report. The tears begin burning my eyes at this point.
The visit did get better from here. He wasn’t saying that he didn’t believe that I didn’t still have endo or that I wasn’t really in pain. He believes that adhesions are probably what is causing the pain versus endo itself (which I can agree with) but I am not a candidate for surgery as at this point as it would only make things worse. He is, however, going to take me completely off estrogen and instead up my progesterone to suppress any endo that may be remaining.
He also believes very strongly that I have Interstitial Cystitis (IC). Dr. H has thought that in the past however my PST came back negative. Since IC is considered endo’s “evil twin” as they almost always exist together, he is going to start me on treatment anyway. Its worth a shot right? What’s another pill (or 3) a day? He stated that IC is one of the most under-diagnosed and under-treated illnesses out there, especially since it can be a source of major pelvic and abdominal pain.
In addition to adjusting my HRT and starting Elmiron , he also suggested physical therapy which he referred to as “vaginal physical therapy” which completely scares the beejeezus out of me! What the heck is that?! Some form of torture?! I’ve done some research and I’m still very unsure about the whole thing. I’m just not sure I can be comfortable with that.
If none of this provides relief, a nerve block will be next which I will have to do much more research on before I ever commit it it.
After discussing the options, he sent us on our merry way. I am still trying to digest everything. It was a lot to have thrown at you at once. He said that at this point there isn’t much we can do for the source of pain (adhesions and endo) but instead it will be more pain management. Of course, we hope that we get lucky and the IC treatment takes the rest away. I was hoping for a more positive and encouraging post to deliver after my visit but this is all I have! I will keep you up to date on how the treatment works!