In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.
In Part Two we looked at a big ol' red flag that is not being discussed in the EBM controversy.
In Part Three - that's this one! - I break this mess down and discuss how it applies to you and the health of your lady parts.
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What does all this discussion about the strengths and limitations of EBM mean for you?
Rather than waiting for someone else to fix us, we have the opportunity to step up and be in charge of our care. Be a partner rather than a patient.
To start, you'll want health care providers who have experience working with your issue. They have a higher probability of following the research out there, and will have the most anecdotal evidence to guide their suggestions.
You can find some of these people through "Find a Provider" pages at the International Pelvic Pain Society, the National Vulvodynia Association, and the American Physical Therapy Association's Section on Women's Health.
If you can't find anyone in your area, you can always try contacting someone close by to see if they have any suggestions.
What if you don't have access to someone with this experience?
Then you need to be proactive and find the doctor who is most willing to take the time to find what little research there is, and combine their knowledge of your situation with the information they get. You can find great tips on how to do this within the limitations of our convoluted and time-strapped medical system in the book "Healing Painful Sex: A Woman's Guide to Confronting, Diagnosing and Treating Sexual Pain," by Deborah Coady, MD and Nancy Fish, MSW, MPH. (Which you should totally have anyway - in my opinion it's one of the best and most comprehensive books out there for V pain.)
No matter what doctor you have, you will have to be willing to take risks and try new things, and be prepared for some of those things to not work. No need to despair if that's the case. Bring your new information back to the table and keep working on the puzzle.
Since your doctor is going to be more humble about the limits of their knowledge, they are more likely to be open to whatever feedback and research you provide.
How do you find research? You can access it through the NVA. You can also participate in studies through the NVA, helping to create more research. (FYI they recently overhauled their site, so if you haven't been there in a while, check it out.)
Another way to incorporate EBM into your care is to research information from studies on related topics. For instance, Dr Dean Ornish has extensively researched the impact of lifestyle choices on chronic illness.
If you are interested in trying something that doesn't have evidence behind it, or that is outside the bounds of Western medicine, your doctor may be more willing to support you than a doctor who is used to relying on evidence alone. Your experiment stands to benefit not only you, but others as well; your doctor can add your experience to his or her anecdotal evidence.
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A great example of someone who successfully healed with zero evidence of any kind is Sarah Kennedy.
Faced with painful sex but never getting an official diagnosis, she stumbled upon a technique called Orgasmic Meditation. Invented not for pelvic pain but to enhance one's sexuality, OM involves gentle repeated stroking of the clitoris, alone or from a partner. Boom. Regularly practicing OM healed her V pain and she is now a life coach who specializes in helping women experiencing painful sex and low libido. You can learn more about Sarah's story and her coaching practice here.
Even if you feel like you are running out of options on the EBM for V pain front, there is always something else out there. The world is a big place.
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It's true that we don't have as much evidence to go on when it comes to treatment for V pain. That doesn't mean we can't benefit from EBM. More importantly,
The lack or existence of evidence on treatments for V pain is not the sole determinant of whether or not we get well.
These bodies are ours and no one else's.
And we are 100% capable of taking care of them.