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!

All the insanity, Lack of Updates!

Well life got away from me and blogging just didn't happen. So here is a brief recap since my last post.

Surgery #2 with Dr. Dulemba also known as a second look surgery to break up newly formed adhesions was a success. Another wonderful experience at the hospital and with the addition of the scopolamine patch before surgery there was no vomiting. It was over an hour long as things were already stuck back together again.  By now it was obvious menopause had hit and I was started on .625 mg of Premarin.  I did not feel as well.  When I got home it took about 2 weeks of horrible hot flashes, body aches and just feeling horrible before my body adjusted to the Premarin.  It also made me super nauseated. I even ended up in the ER for fluids because of it. So I tried the patch, which the insurance will only cover the generic, which doesn't stick as well and so after almost 2 months of trying that  I gave up and went back to the Premarin, this time with increased dose and the nauseated feeling was much less. One of the biggest issues of the patches is no hot baths, and frankly I couldn't even shower without it coming off.  Such a pain!  So now I was on 1.25 mg and finally feeling more human. I had no idea how different surgical menopause was than natural menopause and it has been trying to say the least.

Then I started having episodes that felt like appendicitis. Was in the ER twice for it. In April they admitted me to the hospital sure it was appendicitis. Scans of course showed nothing but the pain, nausea and vomiting didn't subside.  After 3 days in the hospital the general surgeon agreed to open me up. I wanted her to remove my appendix, I was convinced it was my appendix and Dr. Dulemba even felt it was the culprit and regretted not removing it.  When she got in there she released a couple of adhesions not even on the same side as the pain and burned (WTF??) a spot she felt might be endo and then left my appendix stating it looked fine to her.   I ended up with a blood clot from all the IV pain meds in my arm and that vein is now ruined.  Things seemed to settle for a bit, but then it started all over again. The general surgeon said you are still healing its healing pain call me in October if you are still in pain.....I wanted them to at least do a colonoscopy.  So for a while I just continued the pain cycle, every couple of weeks I would have 3-5 days of appendicitis like flares.

This eventually got old, this was not healing pain or additional adhesion pain, in addition to this my burning groin pain was happening at the same time.  So I reached out to another Endometriosis specialist, one who was added to the list on Nancy's Nook after my surgery with Dr. Dulemba otherwise I may have gone to him to begin with. Dr. Adam Duke was only 3 hours away in Post Falls Idaho.

So I called and made an appt. for the end of June.  I will write a separate post about my initial consult. 

Also in March my 15 yr old daughter had surgery with Dr. Dulemba as well, her endo was severe, he said it was one of the worst cases he has seen for somebody her age, she also has polycystic ovaries and adenomyosis.  Such a horrible diagnosis for such a young girl. She had excision, which ended up being almost total peritoneal excision, a presacral neurectomy for the adenomyosis and ovarian drilling.  Her endo receptors were equal estrogen and progesterone.  Her second look surgery her ovary was stuck to the side wall.  She is feeling better, but with not a lot of option besides hysterectomy for adenomyosis she is stuck living with some pain.  She of course hates the pain and heavy bleeding and wishes she could just have a hysterectomy.  Its a tough decision for sure.