Right now I’m hurt, scared and anxious. I’m so embarrassed to be discussing this, but I feel it’s something I must do. You see, for the past month, I’ve been struggling with nightly bed-wetting.
I went to my primary care doctor and he thought I had an infection. He wrote me a script for an antibiotic. I was hopeful. But my symptoms cleared up for only a few days before returning and accompanied by pelvic pain and lower stomach pain. I want back to the doctor, but he wasn’t able to help me. He said the problem was likely due to my cerebral palsy and recommended a urogynecologist. My primary care doctor said that this specialist likely would have to do a “scope.” I was terrified.
I already have a great OB-GYN. He diagnosed me with vulvodynia, which is unexplained vaginal pain. In my opinion, the pain is severe. I say “in my opinion” because I have found that when I tell people about it — doctors, nurses, friends — they seem to listen, but often don’t believe me, or they don’t believe the pain is as bad as I describe.
I tried to push this fear to the back of my mind and make sure I was as relaxed as possible going into the appointment with the specialist, because I knew it might be painful. I took comfort in the fact that I was aware of my pain and what my problems were. I thought this doctor would understand and be helpful.
I felt good about the appointment. It finally would provide answers after a month-long battle with my body. The woman at the front desk was super friendly and the office was cozy. The nurse was amazing. But then when I met the doctor. It went so, so wrong. I had a month-long list of symptoms I wanted to tell him about. I wanted to tell him about my vulvodynia, about the stomach pain and pelvic pain I’ve been having. But he did not listen. All the doctor did was ask me the questions on his checklist. He didn’t give me a chance to talk about anything. The exam was awful; the pain he caused me was unbearable.
As I write this I am shaking with tears in my eyes. I feel so defeated and so sad. I feel like I was not listened to or heard.
I felt he did not believe my experience, didn’t care or want to help me. I’ve seen the inside of many doctors’ offices. I’ve met many doctors and nurses over the course of my life. I am lucky to say that I’ve only met a handful of doctors like the one I met that day.
If you are a doctor, I encourage you to really think about your patients and what they could be experiencing. Please listen and please believe them. If you’re a patient, do not give up.
It seems the next stop for me, if this doesn’t improve on its own, is the ER. It is the last resort that I’ve been putting off, but it seems to be the best option. I will keep you all updated.
I’m really sorry if this was a downbeat column. I am just so sad right now.
Note: Cerebral Palsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cerebral Palsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cerebral palsy.
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