Diagnosis: Getting Better, But It Still Sucks

That’s what my OB/GYN said at the end of an emotional but helpful annual visit. “So you’re getting better, but it still sucks.” I thought she did a pretty good job summing things up.

She was proud of the progress I’ve made over the eight and a half long years since I first began seeing her after my injury from another doctor delivering my baby. I wish she had been my doctor when I was pregnant; perhaps none of this would have happened, but we’ll never know.

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The Pain IS the Problem

The second or third time I sat down with a nurse practitioner who worked with my new OB/GYN that I found near my home after giving birth to my daughter and finding myself in severe continuous pain, she tried to explain to me how pain works. It took a lot of appointments with different doctors – gynecological specialists, pelvic pain experts, a psychiatrist, a neurologist and a handful of physical therapists – for me to really grasp the whole concept, but one thing she said to me that at first really confused me was “the pain IS the problem.”

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The President’s Example

I just watched President Obama speak at the White House to doctors and media about his plan to combine the efforts taken for healthcare reform in Congress to “get it done.” He concluded his speech using the example of a woman who had breast cancer, who worked, who had good insurance through her work and her husband’s work and who still ended up in significant debt from her medical expenses and spends her time worrying about money and working hard to pay off the debt instead of spending the time working on her own health and spending time with her children. Her name was Laura Klitzka but it could have been my name or any number of women or men in the United States who have the same problem.

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Asking for Help Can Be More Difficult than the Pain Itself

After going through two long bouts with severe injuries resulting in long-term pain, I realize I’m still uncomfortable asking for help.  Only when I began opening up to friends and colleagues over the past year did people begin offering to bring me food or help with my daughter and I honestly didn’t know how to respond.  Finally I finally started allowing friends to bring me food now and then, and to help me with my daughter.  But every day life is still a real challenge for us, so I think I’ve identified at least one easy way friends can help – even from a distance.

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Injection Reaction and Life Gets in the Way

It’s been over three months since the nerve block injections. A few days after I received them, The New York Times came out with a a feature about a study on how many redheads react to anesthetics. That would be me. Sigh. Luckily, thanks to this blog, I got in touch with someone else who had a similar reaction who told me it took about 3 months for it to wear off. She was right. It was a huge help having a timeline to focus on. Now I’m almost back to where I was before those awful shots.

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Worse

It’s been two weeks since my injections and people are already just assuming I’m feeling better, so I thought I should explain. No, I’m not. It’s worse. I was warned, but not quite enough. See, I was told I might get a “flare-up,” but I’ve never felt anything quite like this.

Imagine being cooked over a fire, boiled, burned, smoldering, along with being stabbed by small knives, all at once. I wish I could say I’m exaggerating, but unfortunately that’s what this pain feels like. It’s not that way all the time, so I’m lucky in that respect, but it can come on at any point from sitting or moving too much or whatever. This is way worse than any flare-up I’d had in the past from other activities that might have exacerbated my pain. Sigh.

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Injection City – Report from the Front

injection_needleMy physical therapist is a really wonderful person. I’m incredibly lucky to have found her. Both my OB/Gyn and the local pain clinic sent me to her over a year and a half ago, and she’s made my life a lot better. But once my recovery started to plateau, she referred me to a pelvic pain specialist in San Francisco who essentially finally diagnosed my problem as pudendal nerve neuralgia (aka neuropathy, stretched nerves, entrapped nerves). His recommendation: a series of massive injections.

Yesterday, after a month of planning and preparation to make sure I would have help with my daughter, food in the house, and access to all of the pain management supplies I could possibly need, I trekked up to SF with my husband to get the shots. My PT had told me what to expect, thankfully, so I knew it would be excruciating. Thinking about it now still turns my stomach. It was like being stabbed 7 times in my pelvis. He injected me three times, with a six inch needle, and moved the needle around internally to hit the right spots near the problem areas – vaginal muscles, coccyx, and pelvic floor. It took less time than giving birth, but in many ways, the pain was sharper.

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