Now that my blog is coming up on its one year anniversary I want to do some feature pieces on my own story and experiences on my women's health journey. I hope to shed some light on what I've been through, stigmas I've faced, and the struggles I've overcome thus far to help others feel less alone and relate based off of their own troubles. This story has been published in a few different places but this is the first time I've actually shared it here.
I was always afraid of penetrative sex, from the time my mother explained it to me at 7 onward, but when I was 12 I had to get my first pelvic exam to try to figure out why I was having such long periods. The exam was excruciating as I was, of course, on a heavy period at the time, so there was blood everywhere, and 4 doctors held me down while the gynecologist inserted a metal speculum into me. This experience gave me PTSD and probably is the main source for my severe Vaginismus. After leaving the doctor's office, I tried a few different medications to regulate my periods, all of which gave me terrible side effects, so by high school I just gave up and dealt with it, eating Iron Kids’ Bread to stop me from developing Anemia. In college I got on the pill and stayed on it for several years, not realizing the pain it would cause to my vulva. I wasn't diagnosed with Vulvodynia until age 24 and PCOS until age 27.
Due to my trauma, I was unable to wear tampons or even consider having sex; I just avoided even looking down there. It wasn’t until I was 24 and in my 3rd long relationship that my boyfriend researched and discovered Vaginismus, diagnosing me himself. He was a massage therapist, and thus had a thorough understanding of the human body, so he knew what I was dealing with went deeper than just an irrational fear of sex. He had also pointed out that one of my legs looked longer than the other, leading me to get new x-rays and see a chiropractor to treat my tilted pelvis. I was diagnosed with Piriformis Syndrome and Sciatica, proving I would need regular adjustments and massages to try to straighten me out and ease the pain in my butt, which in turn caused the pain I felt when attempting to insert anything vaginally. I learned that there was both a physical and mental aspect for most women when it came to these pelvic conditions, so I needed to figure them out for myself and work through them.
A year and a half into our relationship, my boyfriend bought me a plastic dilator kit, which also gave me access to a worldwide online forum, as a present for Valentine’s Day. Equipped with an actual medical term and background knowledge on my condition, I was able to go to a gynecologist and report my issue. This doctor didn't believe me until she attempted a pap smear and I broke down in tears and nearly kicked her, so she recommended I seek therapy, but didn't know who could help. I eventually went to another gynecologist who insisted on giving me an exam, despite the fact that I begged her not to since I was on my period and in pain, and after fighting tooth and nail about it she finally recommended I go see a sex therapist and handed me a business card. This sex therapist recommended a gynecologist who specialized in vulva pain (whom I also read about in the online forum), who gave me my official Vaginismus and Vulvodynia diagnoses. Over the course of the next couple of years I was written multiple prescriptions to try out. She also gave me a physical therapy referral, which did help, but my therapists kept moving away or changing schedules, so I went to 3 different locations to keep up with these appointments.
In 2017, since I had already met my insurance deductible dealing with my newly acquired digestive issues, I decided to go ahead and get a Vestibulectomy as a last resort to cure my Vulvodynia. I had tried muscle relaxers, vaginal valium, estrogen cream, nerve meds, mental and physical therapy. Some treatments helped more than others, but it had been 2 years since I managed to get through all of the dilator sizes and lose my virginity, but I still couldn’t really handle friction. I went in to get a partial Vestibulectomy, which means they cut the vestibule only at 6 o’clock, at the perineum, but when my gyno poked me at 11 o’clock with the Q-tip before putting me under I screamed because the pain was so intense that my eyes rolled back into my head. This led her to go ahead and give me a full Vestibulectomy, where you cut out all of the skin of the vulva and pull forward the skin from inside the vagina to create a new one. This allows you to have fresh nerves so you can start over again without all of the topical pain getting in the way, like leaving the womb a fresh newborn. However, this also means you have to start all over again with dilating after the stitches dissolve. It took me longer than expected to recover, so I couldn’t handle sex again for a year, but the pain was definitely improving. Unfortunately, probably from having outercourse too soon in my new relationship, I ended up developing a Bartholin’s Cyst which comes and goes as it pleases, but usually fills up when I get turned on, due to the blood rushing down there and causing me pain during most sexual activity. (I will write a full blog detailing my Vestibulectomy soon).
I have had more boyfriends than most people can even fathom. I can’t say that all of my relationships have ended because of my inability to have regular, penetrative intercourse, but it has always been the elephant in the room or the beast looming in the background. It creates resentment, insecurity, and tension in male partners; those who are less endowed freak over having less position options and those more endowed worry about causing me excessive pain or not being able to get the whole thing in. It has often come down to the guy making it more about himself than me and just not having a high enough emotional intelligence to grasp the situation; refusing to put the effort in to work through this with me in a patient and understanding manner. It takes a mature person to travel this road with you, and trust me, not everyone is mentally equipped for the ride.
As far as the impact on my career goes, I found it very difficult to work with women in my 20’s because so many loved to discuss their sexual escapades, meaning I felt I had to lie and pretend I wasn’t a virgin to escape the fear of judgement. I lost my virginity on Labor Day at 28, a year older than actress Tina Fey lost hers, to a long time prior ex of mine because I was venting about how angry I was at my most recent ex. It wasn't planned at all and just kind of happened (after dilating of course). We were both shocked, relieved, and excited that it went in and I felt no pain at all. I couldn't really tolerate movement, but it didn't matter, because I was officially deflowered, so to speak.
My main struggle in terms of my vagina has been getting people to believe me, doctors and otherwise. I’ve been told the ever popular phrases “just have a glass of wine”, “you just need to relax”, “you don’t ACTUALLY have Vaginismus -That’s a very serious medical condition.” (blog on people's reactions to my new coming soon!)
It’s been tough not having my family understand or care to educate themselves. They just change the subject if I try to bring up any of my health issues and sound embarrassed if I mention going to therapy. I think they view it as a weakness, which does nothing to help with the mental strain these conditions have on you and your perceived ineptitude. However, all of my close friends know about my conditions and that I could at any moment talk about them. I also always try to have one person at each job know about my situation, as there will inevitably be a rough day where I will need to cry in the bathroom or tell someone about a setback I’ve had.
I used to have the same New Year’s Resolution every year of my 20’s: to learn how to have sex, and I would feel like a failure every time it didn’t happen. I blamed myself for not making enough progress towards beating my Vaginismus/Vulvodynia with each passing year. Lately, I’ve learned to overcome this mindset and not pressure myself as much, but we are our own worst critic.
I always stretch in the morning and evening to relieve back pain and muscle tension, plus I get a massage once a month from a professional. Back when I had good health insurance, I would go to physical therapy every 2 weeks to learn exercises to improve and maintain my pelvic health. Going to the gym twice a month also helps me keep limber and in shape to better tolerate penetration.
I’ve found that ordering a pediatric speculum and practicing with it before my actual pelvic exam helps prepare me and work through the fear mentally. My gynecologist also lets me insert it myself, then takes it from me to turn upright and open it to spread me. I know for other women the scraping of the end of the cervix to obtain a sample is the worst part of a pap, but I think for those of us with Vaginismus and Vulvodynia the initial insertion of the cold, metal speculum or the larger, plastic one is the least comfortable part. I have someone come with me to hold my hand or if no one is available, I squeeze a little stuffed animal while I listen to music through my headphones and take deep breaths.
It is still my personal goal to achieve an orgasm for myself and my partner through penetrative sex; I’m still unable to tolerate enough movement to allow that to happen at this moment in time, but it’s a work in progress. I hope to continue to spread awareness about all my medical conditions as much as I can by continuing to speak openly and frankly about them. I think that in recent years we’ve come a long way with having actual media exposure and offering women greater access to information to help them on this journey so we're headed in the right direction. We can all get through this together so if this sounds a lot like you, don't give up hope! If I can go from not even being able to look at myself to experiencing pleasure from penetration then you can, too. We all have the ability to move forward and demand that our body listen to us so keep on keeping on until you've reached your goals and surprised yourself.