“Chronic illness is like grief, it comes in waves, and sometimes it’s so shallow you forget it’s there. Other times, a swell brings you back into the ocean, and it’s time to sink or swim yet again.”
Chronic illness is like grief, it comes in waves, and sometimes it’s so shallow you forget it’s there. Other times, a swell brings you back into the ocean, and it’s time to sink or swim yet again. This year I wanted to focus on swimming and not just staying afloat. Last year was filled with a strike, pay cuts, uncertainty, and trying to just survive day to day. This year my body is paying the price of survival mode and another stress induced lingering yeast infection.
No one prepares you for having to be the project manager of your own health. In our system, not only do you have to be your own scheduler, time manager, and financial planner, but also your own advocate, especially when the pain is below the belt. It can become a full time job keeping up with all the doctors, insurances, bills, and emotional and physical tolls on your body. Yet, we are expected to show up each day to our jobs and social obligations with a smile on our face. Meanwhile the top of your vestibule is on fire when your underwear hits it just right and you continue talking through the zoom meeting.
If you’ve been following “Lady Parts,” you may already know a lot about my journey. If not, well you have some reading to do. Did I mention we have an entire movie about it? You can watch the trailer here: https://ladypartsfilm.com/trailer
Okay fine, I’m done with the “Lady Parts” plugs for this post. Moving on.
A lot of people assumed the story ends there. I had pain free sex and now my life is moving forward. A happy ending (pun intended). Unfortunately, the waves decided to come back as a storm approached. I found myself in pain again and knew that it was time to buckle down (pun intended) and focus on my health. As a 30 year old woman who lives alone and is paycheck to paycheck, this is a daunting task. They say to eat healthy meals. That requires money for healthier options and extra time to cook. I already have to work side jobs just to keep up with basic expenses. They say to use certain products with no fragrance. It’s more expensive. They say to do at home exercises 3 times a day, but I can’t just lie down flexing my pelvic floor in the middle of the office. Did I mention my initial pelvic floor PT appointment was $700? My notes app is now filled with reminders of medications, exercises, and bills.
In today’s capitalistic world it is extremely difficult to put your health as a priority. I have to work over 40 hours a week just to pay bills. Doctor’s offices are only open during work hours. I have to get pre-authorization for yeast medication. It feels like you are climbing up a mountain with no end in sight. Everything I am doing for work like sitting at a desk and staring at a screen, are actually making my entire pelvic region worse.
To give some details, when a vestibulectomy is performed, they do not remove everything, meaning there is still a tiny part of my vestibule that has the nerve ending problem. This is causing pelvic floor dysfunction and the nerve endings have been acting up due to a recent long term yeast infection. I recently learned all about vulvodynia’s connection to chronic yeast infections, which honestly explains the past 30 years. Plus my double curved spine and tilted pelvis are not helping the issues. The vaginismus has been there since my first tampon insertion attempt. Although I’ve made so much progress, there is still so much I want to work on. It’s all connected as we know.
I’m not a doctor, so I’m not going to try and explain the intricacies, but my goal now is to prevent infection and work on my muscles from top to bottom. This also means no alcohol or added sugars. I had done this diet in the summer of 2015 while living in an NYC dorm with no AC and no kitchen so how hard can it be now that I have a stove and a window unit?
I also have my 4 different oils and supplements lining my nightstand, in a rotation for the morning. Drops of oregano oil in my water. A grapeseed oil pill to follow. I’m a witch, creating her brew to fight off the yeast that was resistant to everything else. Usually a fluconazole will treat a yeast infection, but for mine, there have been a myriad of trial medications with unruly side effects. My vision was gone for an hour after taking one of the meds. Another one gave me explosive diarrhea for 2 days straight. Once infected, the tiny part of my vestibule starts to inflame, and my mind spirals back to a place where sitting on a bike felt like sticking a hot knife up my vagina. I always fear I’ll slump back into the deep water. My mind continues down its rabbit hole of what ifs as I circle back on my emails these days.
There is always the option of getting surgery to remove the rest of the affected area, but if you know anything about this surgery it means taking at least a year off for full recovery. Not to mention $11k and not covered by insurance. I want to do everything in my power to avoid the surgery and find ways to live pain-free with my condition.
I’m entering an old world again, but this time with so much more knowledge and support than ever before. I’m back at it with pelvic floor physical therapy. I’m going back to the chiropractor. I’m starting new medication. I’m seeing a new therapist. I’m staying sober. I’m cutting out added sugars. I’m starting up my stretches and yoga again. Basically I’ve assembled a team of Avengers to tackle my body head to toe. Maybe my body will begin to feel normal. Not normal, but healthy. I don’t like using the word “normal” to describe bodies anymore because that word has led me astray for years.
Somewhere along the spiral you finally learn how to stop it before it goes all the way to never leaving the bed. You learn that taking medication for your anxiety, depression, and PTSD is like any other health issue and necessary. A lot of people think PTSD is mainly for people who fought in a war, but for people with chronic pain conditions, it is commonplace. I just started taking anti-depressants for the first time in my life and was so scared before. For years I’ve had a deep mistrust with doctors who told me my pain was “normal.” Now, I am so happy that I started on this mental health journey.
Then it all comes down to the small wins. Noticing the small improvements. Celebrating the small things just as much as the big things. The waves come no matter the season, but now they only go to your knees. You can notice them from miles away approaching, and grab your supplies to await the inevitable storms. I feel ready this time.
After all the trauma, comes art and I said I was done plugging “Lady Parts,” but I’m a liar! We actually got into our first film festival and will be premiering at Florida Film Festival in Orlando this April. So pack your dilators and make sure to follow us on Instagram for more updates on screenings!
Also I wanted to do a plug for Tight Lipped, which is a grassroots movement by and for people with chronic vulvovaginal and pelvic pain (Oh hey that’s me). I have been attending their community meetups and getting involved with their advocacy and truly finding so much validation and love from it. Please make sure you go and support them and follow them on Instagram.
We actually did 2 didactics, which are a lectures for residents, at Weill Cornell here in NYC. The lecturer for the first didactic was actually the same doctor that performed my vestibulectomy back in 2016. Watching the presentation I learned so much about my own disorders, but for the first time felt extremely validated about all the pain I was in. It was not something to be shrugged off or dismissed. It was now being medically explained to me and others. That yeast infection medication did make me go blind. The nerve endings did feel like a hot knife digging in. It was all real. It all happened. I was never crazy.
Until next time, please enjoy this photo of me doing stand-up for the first time talking about enemas and antidepressants…
Bonnie Gross 
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