Consult with Dr. Duke

I was super nervous about this consult.  Of course the 3 hour drive gave me plenty of time to think and worry as well.  What if my pain was still in my head?  I mean I had now had 3 surgeries with specialists, what if there is nothing more that can be done and I have to just suck it up and live this way? 

I ended up arriving almost an hour early as I had put my appt. in google calendar wrong. But the receptionist was super sweet and said they could probably get me in early.  She was wonderful and kind and I felt a bit more relaxed. 

The nurse brought me back after a few minutes of waiting and we went through my complicated history.  I kept apologizing for it being so complicated.  She reassured me that I didn't need to worry.  We discussed my concern for the endo of the appendix and she said don't worry he will fix you right up.  She also had endo so she totally understood! 

Dr. Duke came in and was also very kind. We clarified some things in my history and he was unhappy that the general surgeon I saw locally did not remove the appendix.  He said lets get surgery on the books but I also believe you also have some other pain generators that need addressed.  Interstitial Cystitis and Pelvic Floor Dysfunction. Dr. Dulemba had mentioned IC, and said I needed to find a uro/gyn after I had healed from surgery to confirm.  Of course doctors here didn't want to refer me.  So Dr. Duke pressed and examined and my bladder was painful, way more than I thought it would be, then he cathed me and numbed the bladder.....less pain.  He also checked for pelvic floor dysfunction, which I didn't ever really believe was an issue. But let me tell you when he pressed on the obturator muscles I nearly jumped off the tables and they went into serious spasms.  We also discussed the masses in the inguinal canals, in which my pain flares at the same time the appendix pain does.  He said he would have a fellowship trained general surgeon on standby for surgery and we would remove the endo from them as well.

So after I was dressed again we made a plan.  I would increase my Premarin, start taking valium vaginally for the PFD until I was healed from surgery then I would start pelvic floor physical therapy. As soon as surgery was approved through insurance I would have my appendix removed, inguinal canals addressed, he would hydro-distend my bladder and look with a scope to verify IC and do a treatment.  Even though I was just diagnosed with 2 other issues, I felt hope, I wasn't crazy.  It has been a long journey but I have not given up.

One of the questions he asked me after the pelvic exam took me a bit by surprise.  He asked if I had been raped or sexually assaulted before.  He was very kind and non judgmental in this question, it was true concern.  I paused for what seemed like an eternity, wanting to answer no, but knowing that I had to be honest. I said yes, yes I had been raped about 20 years ago. He went on to explain that women who have been raped or sexually assaulted have almost a 3 times great occurrence of pelvic floor dysfunction.  I never would have thought that something that happened that long ago would be still having an impact on me today.  It was an emotional appointment for me, but things made so much more sense now. It seems that women don't get treated for PFD after rape or assault for many reasons, shame, guilt or being told by doctors that the pain they experience during sex is not real its just PTSD from the experience, when in fact it is actually the muscles, a real and treatable pain generator.

Surgery is booked for August 3rd and is coming up fast. Of course I am having a horrible flare and it can't get here soon enough.  I feel I am in very good hands and am so happy that I only have to travel 3 hours away.  My husband will accompany me for this surgery. And best thing is NO BOWEL PREP!  He is one who has realized that there may actually be more harm than good by doing bowel preps before surgery. 

So if you are still having pain, despite seeing a specialist keep fighting, there are reasons for your pain you just need to find and treat them.  I am very hopeful that this is going to be my last surgery for a while!