This week is all about raising awareness of the chronic pain condition, vulvodynia, that affects millions of women worldwide. Today I will be discussing vulvodynia treatment.
Vulvodynia is a very tricky condition to treat because what helps one person may not work for another. I have tried so many different types of treatments in the past and have spent close to $50,000 of both mine and my parent’s money in trying to get help. It’s also very annoying that most of the doctors I have seen WERE NOT EVEN AWARE of the available treatments. I have been told to just “learn to live with it” and there is “no treatment”. Wrong. There are treatments.
Here’s just a few of the ways vulvodynia can be treated:
- Tri-cyclic Antidepressents, Anti-convulsants (pain blocking medications)
- Topical Lidocaine
- Topical Hormones
- Topical Compounds
- Nerve Blocks
- Pelvic Floor Muscle Therapy
- Diet Modification (ie. Low Oxalate Diet)
- Surgery (for VVS patients only)
- Alternative therapies
- Botox injections
I have tried many, many things to rid myself of this pain including various prescription medications, creams, hormones, diets, PT, acupuncture, chiropractic, lidocaine, etc…I could be here all day if I were to list everything. What has helped me the most is the physical therapy and topical hormones. Unfortunately, I don’t have a physiotherapist in my area who can help me. I need to find one that specializes in the pelvic floor. I saw Caroline Allen in Ottawa for 3 years and she was amazing. I really really miss her. I do my own PT with John’s help especially when I am experiencing a flare up of symptoms.
I have had to make major lifestyle changes to cope with daily pain. I can no longer wear jeans or any kind of tight pants, use fragrance free/dye free laundry detergent, no more bubble baths, no swimming pools or hot tubs, no creams of any kind in that area, no sitting or standing for too long, no bike rides. Sex is often out of the question.
Basically, what I am trying to say is that my life is very different from how it used to be. I feel like I am walking around with this heavy weight of pain on me and there’s no escaping it. I wish I could take a vacation from my body! I cry sometimes when I think that this is what I have to look forward to it and it makes me very depressed. I guess that’s why I just take it one day at a time. Thinking too far ahead into the future only makes me sad.
I wish that I had a doctor in my country who was as wonderful as my US doctor. Dr. Coady is the only doctor who has helped me and knows more about vulvodynia than me. See that’s the thing- I feel like I know more than the doctors. How can I trust a doctor’s advice then about my condition when it’s something they don’t know anything about? She always does a treatment plan with each visit which makes me feel better. I need to feel like I am in control of at least that since my body is very much out of my control. Too bad their wasn’t a pain switch that I could just shut off!
Update 2018: I pretty much gave up on doctors to help me. What has helped me is pelvic floor physiotherapy. I’ve been going to one locally (yay!) for the last year and she is amazing. My flare ups aren’t as bad and there are some days when I barely feel anything at all. I’m not “normal” yet, and may never be, but at least I feel like I’m finally on the right road.
I believe a big component of my pain is muscle tension. We’ve been working to relax those tight muscles and knots. Dry needling has been a huge help.
Physio hurts, but it’s a good kind of hurt. Sometimes, the pain is unbearable when she is working on me. I’m literally squirming on the table. I endure it weekly though because it’s the only thing that has really helped me. I don’t mind paying the $65/week for something that works.
Hopefully, I’ll get to a point where I don’t need to go every week. I’m not there yet, though.