As I have mentioned 2014 has not been off to the greatest start and honestly I feel like I have spent most of my time passed back and forth between my doctors with one saying the other was the problem. The pelvic specialist thought that my Celiac was the problem. My GI thought that scar tissue was the problem. My pain specialist just thinks I am falling apart. Needless to say I have struggled staying positive and often wondered if I was just a lost cause and if chronic pain would continue to define my days.
Last week I had an appointment with my primary doctor so we could just lay everything out on the table and come up with a plan. We were able to look at all of the test results and procedure results along with my history. She has been my doctor from the beginning so after almost 11 years, she and I had quite a bit of history. I know that God had designed for our paths to meet as He knew the type of support I would need for my journey. As a scared college kid, I sat in the office of the new doctor who had just come to town. Coincidence? I think not. Within three months of my initial exam, I was diagnosed and began treatment for endometriosis (some women have to suffer for years before nailing down the diagnosis). In all of the time since then she has never once made me feel like I was crazy. Never once has she doubted or brushed off my experience. Never once has she made me feel like I was just a number. Over the last 11 years, she has laughed with me and cried with me so when I felt like I was at the end of my nope, I knew that she could help pull me back in.
So last Thursday she and I along with my husband (and the NP student who just happened to be shadowing my doctor), we laid everything out. Surgery was definitely not an possibility because I am so high risk because of my history of adhesions and obstructions. At this point surgery would only be an option in an emergency (like another total bowel obstruction). I felt relieved (as I still have nightmares about my last surgery) and overwhelmed (as I wasn’t sure what other options we had).
We decided that the next step should be getting a second opinion from a pain specialist. If you have read my blog for awhile, you may have noticed that I am not too fond of my current pain specialist (and I happened to find out that the other doctors in the area aren’t fond of him either) but being in a small town and knowing all of the restrictions involved in seeing a pain specialist, I was too worried that attempting to find a new one would cause problems (such as looking like I was shopping for prescriptions).
With the assurance of my doctor, we knew that the time had come to get a second option. My current specialist only wants to treat the pain with medication and honestly at this point, we aren’t sure if they are helping or hurting so it is time to explore new options (such as a nerve stimulator).
While it may not look like we made great strides in that appointment, I feel very positive about the direction we are taking and more confident that I will not have to continue to live with this amount of pain indefinitely. I feel like there is hope that I regain some type of normal for my life. Pain will no longer define my days and that feels awesome.
I’m so sorry 2014 has been so rough for you, but I’m soooooooo happy you’re finally getting to see some light in the tunnel. I will be keeping you in my thoughts, and I hope this path will bring you some relief and happiness. Sending all my best!
This past week has definitely felt like a turning point. Between this appointment, a mini-getaway with my husband for our anniversary, and some girl time with a longtime friend, my heart definitely feels lighter and my spirit feels refreshed!
I recently ended up in the office of a new pain specialist myself. My first one called me a wimp, suggested I was probably mistreating my BF (who wanted to either hit him or report him to the medical board), and said I needed to just deal with it all better…..oh, and that if I didn’t like the medication that literally made me fall down everytime I stood up, that I’d need to deal without any medicine at all.
Needless to say, I was nervous when I realized the doc a new surgeon wanted me to meet was a pain guy too. But he was kind and listened and he tried an avenue the prior doc wouldn’t look at (and the prior doc said I “probably couldn’t handle”….seriously, I wanted to kick him in the crotch and tell him to handle it)….now I’m not sure it has been fruitful (procedure was earlier this month…outpatient surgical center based nerve ablation), but yay for docs who TRY. I see him again 6/18 and while I’m nervous about what the response will be, at least I feel like I’m in caring hands.
I hope the new doc provides new ideas. It is progress regardless and progress is always good.
I am so excited about seeing a new doctor! If all the other doctors in the area say that my current doctor is a jerk, then it is a sign that he really is a jerk. He’s never made me feel like I was crazy or said that my pain wasn’t real (which was the main positive) but he never wanted to try any other treatments besides medications. He said because I had pain all over, there weren’t many other options. The pelvic pain right now is the most debilitating (which is why my primary/endo dr thinks the nerve stimulator may be a good option) so if we can get it taken care of, I can deal more easily with some of the other issues. Hopefully I’ll get a call this week to set up my first appointment!
fingers and toes crossed!