Wednesday, February 7, 2018

2009: The Year I Had Too Many Doctors

It was October of 2008 and I was a little over 4 weeks out from my laparoscopic excision and left oophorectomy (ovary) removal. This had been my 3rd "Party in the OR" in as many years. I had spent tens of thousands of dollars on surgery with an out-of-network endometriosis specialist and was hopeful that things would now be on the upswing.

On October 18, 2008, I woke up and was unable to sit up without feeling like a knife was stabbing me in the left side of my abdomen - right at the bend as you sit upright. A few days later, I was forced to make another trip to the ER because the pain was horrific. They told me to check back with the surgeon. Every time I consulted with him, he said it couldn’t possibly be the endo since he had removed all of it. He ordered an MRI of my pelvis and abdomen and at the beginning of November, my husband and I drove down to Atlanta again only to be told that the results had come back normal.

The pain continued to get worse and, not knowing where else to turn, I returned to my primary care physician. She suggested that it might be nerve damage and started me on Neurontin and a muscle relaxer to see if either of those options helped. She recommended that I return to my area OB/GYN, the one who had done my first two laparoscopies.

The OB/GYN referred me to pain management and a gastroenterologist "just to rule that out". She said that the pain management doctor could give me injections to deaden the nerves since that was now what she thought could be the problem…nerve damage during my third surgery that wasn’t healing properly. This assumption was made by process of elimination. She upped my dosage of the Neurontin.

I saw the gastroenterologist and he suggested a colonoscopy to rule out any problems in that area.  He also had me do some blood work and a CT scan. The blood work indicated an enlarged spleen, but nothing dangerous. The colonoscopy was normal.

I met with pain management for the first time in January of 2009. They started me on a pretty hefty pharmaceutical protocol which included Neurontin, MS Contin and Oxycodone, but refused to try nerve blocks. I had officially become a zombie and spent much of the day sleeping and/or passing out in random places around my house...too drugged up to even care. I was out of work and homeschooling both of our daughters (ages 5 & 11) at the time. 

I met with the midwife CNA who had delivered my daughter, and she suggested pursuing alternative medicine. She also recommended a different pain management doctor who might be more aggressive at finding a solution rather than just treating my symptoms. I transferred my pain management case to the one she suggested.

The new pain management doctor was shocked that the first one had refused to do the injection nerve block. He scheduled a nerve block injection procedure, but I saw little to no benefit from them.


In July of 2009, I tried acupuncture for the first time looking for a more natural way to manage the pain, but really had difficulty with the feeling of it and didn’t experience much benefit, so I discontinued that therapy about 2 months in.

In September of 2009, my OB/GYN referred me to a second pelvic pain specialist. He did trigger point needle therapy in his office on my very first meeting with him and upended all of my pain management – put me on Cymbalta, and Lyrica and took me off the oxycodone and Neurontin. He referred me for testing for interstitial cystitis and pelvic floor physical therapy. He also had me try out lidocaine patches and some other topical creams which didn’t really help. Around the beginning of October 2009, he performed a pudendal nerve block to determine if that was the source of my pain but it didn’t help and would only have been a temporary fix if it had.

I saw a urologist who conducted the test for interstitial cystitis in October and the test results were negative.

I began having pelvic floor physical therapy 3 times a week that involved a sensor inserted vaginally which read muscle response. My pelvic floor was pretty much constantly in spasm. I was provided with a TENS unit which helped distract me from the pain a little bit. 

At this point, I was pretty exhausted from running around to a million doctors/providers. It felt like I was always at one doctor or another because I literally was.  I was also still seeing my ENT and endocrinologist as a result of my long-lasting side effects from the previous year's "Lupron Roller Coaster" ride.

Finally, I went back to my OB/GYN and scheduled a hysterectomy for the beginning of December in 2009, hopeful that it would resolve everything although she made no promises. I just couldn't handle being tossed around from provider to provider anymore. I was sick and tired of being sick and tired. 

I saw AT LEAST this many medical providers in 2009.

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