If you're going to an OB-G, you think, "Oh, I'm going to get this one specific thing checked out, it has nothing to do with disability. Why do I need to bring up my disability?"
Self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities. You really have to tell them what you need and tell them what to expect.
Simple things like how are you going to get undressed. Whether to bring a caretaker with you or whether the nurse is going to be able to help you. I would be mindful of wearing clothing that's easy to remove.
If you've had good or bad experiences during prior gynecologic examinations, it is important to discuss these with your provider.
If you ask detailed steps of what the procedure is going to entail, you can bring up where that procedure kind of intersects with your body and what you know about your disability, and you can kind of red flag those and say, "Hey, I actually can't relax." And then the doctor is prompted to say, "Oh, well, a thing that we can do is find a muscle relaxant or a sedative." It's helpful to have all of the details and the steps, because that way you can point out what won't work or what will have to work differently.
Depending on your physical limitations, alternate exam positions may be necessary for the gynecologic pelvic exam.
I was very new to how to position myself on the table and I couldn't figure it out. But then they couldn't actually do a full exam. Three months ago, the doctor was like, "Let me bring in my nurse practitioner." And with that, the added help of the one extra hand to hold my legs, it was fine.
There are other modifications to the examination that may improve your comfort, including the use of a smaller speculum, use of lubrication on the outside of the speculum, potentially use of some numbing jelly prior to doing the examination. Additionally, sometimes the exam can be performed blindly with the guide of a finger into the vagina so that a speculum is not necessary.
If you're concerned about spasticity during the examination, then discuss with your provider relaxation techniques that may be helpful for you.
I need to have sedation because my spasticity is triggered from such an exam. I experience a lot of physical pain during the procedure and it's just not tolerable. Looking back in the last three years of time, I think I was able to get continuity of care from one provider. So I was able to build rapport with them, and she knew what my needs were and I knew what to expect. It can be achieved, so it is possible for other women with CP or just physical disabilities in general. It's achievable.
"Self-advocacy is probably the most important part, but it's also probably the hardest part because most of those doctors have not encountered women with disabilities."