How I Cured My Vulvodynia: My Story Part 2.
This past weekend I received three emails from three different women in three different areas of the world. And I actually wanted to read out a little bit of one of the letters. I won’t share names or locations.
I get really really sad when I read your emails because I know exactly how you are feeling and as silly as I feel sometimes making a silly youtube channel about vagina problems I hope that I can share my story and information so that someone else doesn’t feel so alone in this.
For 10 years i struggled with burning, rawness, redness, chronic infections and pain with sex- all of it. I had a most unfortunate reaction to a medication to treat an infection I never had that triggered years of awful pain. I felt like my skin was going to peel off my body. I wasn’t able to have normal intercourse for a really long time without pain. And sometimes it’s still not possible but I think I am in a much better place now than I have ever been before in my life and there’s a few things that are really helping.
I need to rewind a little bit here. I mentioned in my previous video I went to see Dr. Andrew Goldstein at the Center for Vulvovaginal disorders in Washington DC but Arizona: Before that I spent over 2 years going down to Arizona to see. Dr. Fowler at Fowler gynecology in Scottsdale Arizona. He takes a more pathological approach and looks at a different set of tests and is more interested in altered microflora patterns. I had gone to see him initially because what I thought I was experiencing were yeast infections that wouldn’t go away. And I had read he was really good at looking at resistant infections and strange infections that wouldn’t go away. So His tests determined I had very low levels of mature squamous cells and something called inflammatory vaginitis. So what I was experiencing could have been yeast infections or it could be an irritating vaginal microflora. In hindsight the problem was that he couldn’t identify what was causing this in the first place. A piece that Dr. Goldstein figured it out right away.
When I was in Arizona I did Dr. Fowlers full treatment protocol which consisted of many months of antibiotics, antifungals, steroid cream, clindamycin and doxycycline. He also prescribed an estrogen cream which I applied vaginally along with all those other medications. Umm- his treatment worked pretty well for the first year, I saw some resolution but there was a piece of the puzzle missing and unfortunately I never needed all those additional medications. He never advised me to stop taking the birth control pill, and even recommended I stay on it. It's unfortunate that happened because I spent thousands of dollars on medications from the United states not to mention travel back and forth including the costs of the visits because I couldn’t get two of the medicines up here in Canada, and actually using terconazole creams and suppositories long term ended up really damaging my tissues in the long run and i think caused me a lot of the issues I have with vestibulodynia.
So I traveled to Washington DC to see Dr. Andrew Goldstein before Covid happened and then I saw him again at his NYC office about 4 months after my initial appointment for a follow up. I can’t say enough good things about this Centre and the team he has working there. From start to finish it was just a great experience for me, and keep in mind I am no stranger to seeing doctors and specialists and naturopaths for this condition. I have been poked and prodded and tested on for 10 years so the testing he did at his clinic was super simple and straightforward. I will admit I was pretty scared. I went down to DC alone, I was by myself.. It’s daunting to do this sort of thing. It’s a big investment to see physicians in other countries especially when you’re paying out of pocket. But honestly it was the best decision I ever made. Plus New York is amazing and Dr. Goldstein has an office right near Times Square… in the heart of it. I really tried to make the travel I had to do for this condition worth it and it was exciting to go to New York.
The Testing
Many people want to know what his testing is like and what his treatment protocols are and honestly it's going to depend on what your specific issue is, but for my Vestibulodynia and vulvodynia diagnosis he took swabs and cultures, he did a q-tip test for pain response. That’s essentially where they take a Q tip and touch different areas along your vestibule and labia to pinpoint where the pain is and how strong. Vestibulodynia follows a pretty standard pain pattern and is similar for most women who have it so that was a pretty dead giveaway. and he also checked my tissue under a microscope using a vinegar test to check for things like lichen sclerosus and lichen planus, to make sure there wasn’t something more serious going on. There are many different reasons for vaginal and vulvar pain so for me it was 100% worth it to travel to his clinic and be able to see the team leading the research in this area.
Diagnosis
Vestibulodynia and hypertonic pelvic floor dysfunction. Essentially what happened to me was that I started on birth control too young, and I was given birth control that was typically used for women who struggled with acne. I never had acne, yet I was on this pill more or less for 10 years. He told me the pill had caused thinning of my vulva and vaginal tissues which was creating the pain and infection like symptoms I was experiencing, then by overusing the medications I was given to treat these infections I damaged the nerves in my tissues. Years of chronic “infections and pain” left me unconsciously tensing my pelvic muscles. When there’s pain- muscles usually tense up. This left me with an extremely tight pelvic floor and very tight muscles that wouldn’t release. When muscles are tight, blood flow is restricted this can actually present itself as burning and swelling that doesn’t go down. So his recommendation was pelvic floor physiotherapy. I see an amazing practitioner here in Vancouver who does manual release, trigger point therapy and has taught me really good breathing techniques so I can loosen my pelvic floor muscles. She does manual release so she gets right up in there to lengthen and stretch my vaginal muscles.
My Treatment In Depth
Discontinuing the birth control pill was number one. The longer I stayed on low dose BC the worse my symptoms were getting. Many women believe that taking a low dose of birth control is better but that’s not the case. Low dose birth control pills can affect hormone receptors in your vaginal area because there are so many estrogen and testosterone rich receptors in that area. Hormone Gel: Currently I use a compounded gel that has estrogen and testosterone in it to heal my tissue and help with lubrication.
The other things that have proven helpful and what I may have to try one day if the physiotherapy doesn’t help with the hypertonic pelvic floor Are Dysport Injections- basically like botox injections into your vaginal muscles and diazepam Suppositories- these really interest me because it’s basically compounded Xanax that you insert rectally or vaginally that help to relax your muscles. So the journey isn't over yet. I still struggle with this and there are still good days and bad days but I like knowing that there are more treatments out there now- I’m not opposed to botox in my face so I think it’s pretty neat we can put it in other places. And then the last thing- to clear up infections because realistically it's more common in women who have vulvar and vaginal issues.
They recommended Boric acid suppositories/fluconazole for the yeast infections. Actually one of the reasons I made my own boric acid suppositories is because they were recommended to me by physicians in the US, and there you can buy them over the counter and here in Canada you have to have them compound, you need a prescription - they were expensive and not covered by health plans and so I decided to make my own and that's how Intimae started.
Thank you again for checking out the second half of this story. If you like this content tell me, and if there are questions you have or topics you want mentioned make sure to subscribe and let me know!