The Search for Answers in My Chronic Pain Journey
Take a page from my experience to navigate the medical community
How am I dealing with my chronic pain and what am I doing to address it? I know this is a question lots of people have for me. Addressing my pain is still a work in progress, so you all are joining me on the journey.
I want to avoid getting into the details of which medications and what dosages I’ve tried, as this is not about that. It’s really about how I am my own best advocate to get the answers and treatment I need.
I’ll tell you what I’ve tried and what has helped or not helped. Ready? Here we go.
Where To Start
The first thing I had to do was figure out the source of the pain. Easier said than done.
I don’t often share where my pain is when I talk about it. It’s pelvic floor pain. Stick with me here. Even if your pain is not in the same location as mine, the process, the need to push for answers and the determination may all be similar for you.
I’ve had this pain issue before and I’ve used the same solution multiple times so I figured it would work again this time.
At the time, there was a 5-month wait to get into pelvic floor physical therapy. It was a long, painful 5 months. I finally got in to see my regular PT that resolved my previous two pelvic floor issues. We did the standard 8 weeks of therapy, however, this time it didn’t help.
My experienced PT was unable to solve this one.
Maybe it’s nerve pain she said. This was my first indication that she was not Superwoman. I thought she could do everything when it came to pelvic floor pain.
Back at the Drawing Board
I spread my net wide. I made appointments with four of my suburban-Chicago doctors to get their perspective: gynecologist, urogynocologist, neurologist and my primary care doctor.
It turned out that none of them knew what I could do to try to resolve the pain. I asked my neurologist and my urogynocologist if they could talk to each other to try to get to the bottom of this.
Note: these two doctors are not with the same medical organization.
Double note: These two doctors both bowed out from being able to help me this time as they both said they didn’t treat the nerve that I thought was at the bottom of this (the pudendal nerve), so they avoided answering the original question — would they be able to cross medical orgs and talk to each other. Or rather, they got out of having to answer it.
My urogynecologist referred me to a pain clinic in downtown Chicago. This referral only came after I asked them to talk to each other. I just kept poking with one more question, and that’s when she came up with the pain clinic. Another couple of months wait to get in. Tick tock. Pain continues.
Commuting for Answers
My downtown appointment finally comes up. Driving to downtown Chicago means allocating 1.5 hours for the drive there and potentially as long to get home afterwards so I block off 5 hours on my work calendar to be safe.
The appointment goes well. This doctor did tell me that although I had tried almost all of the medications she would turn to for nerve-related pain, I was never on a high enough dose of any of them to treat severe pain like I have.
My well-meaning team of doctors did their best, but this was out of their league, which they all told me at the time. I leave her office with a solid plan to address the pain:
Increase one, specific nerve-related med
Take a muscle relaxer to help with sleep impacted by pain
Note: For me personally, I have a concern about meds with addictive properties. I avoid those at all costs and look for an alternative.
Stop the excess meds:
Multiple low dose nerve-pain meds
Topical treatment, with a special mix of nerve-pain meds from a compounding pharmacy that delivered directly to my home
For the next 5-6 months, we gradually build up two different nerve meds, in consecutive attempts, one at a time, to get to effective doses to treat my pain.
While the first one treated the pain, it also made me jittery and my ability to fall asleep got more and more difficult over time (vs the insomnia being a temporary symptom on the way to the optimal dose, which was what my doctor was hoping would happen).
The second med was not reducing the pain levels enough.
A year goes by …
During this time, we lapped over the calendar month when the pain started. One year since
this mysterious, severe pain entered my life.
I’ve been turning down social events, randomly and sporadically (I never know when the pain will rear its ugly head)
sleep started being impacted, which was a direct result on my work day. Sometimes I would have to do a late start and sometimes I would end the day early. Other times, I tried to muster my way through a full day after impacted sleep. I got called out for falling asleep during a meeting at work at least once.
(Note: all remote work, on-camera. I was so tired, I didn’t think to turn the camera off at least. At the same time, I thought it was worthwhile to stay on the meeting vs get more sleep, even though I couldn’t make a good judgment call about the on-camera status.)
A few months after the one-year mark and about six months into working with the downtown, nerve-med streamlining doctor, I decided it was time to go to the Mayo Clinic. I had wanted to go earlier, but decided to give my downtown doctor a chance first. Her approach seemed reasonable. She was onboard with the Mayo decision.
Bring in the Big Guns
The Mayo Clinic is a large hospital complex in Rochester, Minnesota that is known for having the top doctors and solving mysterious illnesses. Think Dr House and his team on steroids.
Family and friends start to question the validity of my illness when medical professionals cannot validate it. Then, not only am I dealing with the pain, but also the emotions surrounding being questioned by my loved ones.
To summarize, here are my personal takeaways for those of you looking for a place to start:
Advocate for yourself - speak up and don’t settle for no answer. You can’t squeeze water from a stone, so it often means going elsewhere for answers if you aren’t getting answers where you started.
Ask questions - While having PT for my back at a different PT location, I bounced questions off of the pelvic floor PT at this therapy location. I learned about the pudendal nerve.
Be curious - I spent one Sunday researching online the heck out of pelvic floor pain issues and resolutions.
I looked up the pudendal nerve.
With what I read, I was sure then that this nerve was part of my story. This gave me the confidence to include it in the question when I asked the two doctors to talk to each other.
Pelvic floor pain is very hard to diagnose.
I may have to go outside of my circle of expertise at home to get answers.
Stay tuned for part 2 of my chronic pain story, written to help others figure out their next steps if they are also struggling with severe, chronic pain.
Share your experiences with getting answers here in the comments below. Let’s keep it constructive and not judgmental.
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