Hidden Disorder: a psychological thriller of chronic female sexual pain

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“Why do they make these damn things out of paper?” I think absentmindedly, sitting on the paper-lined exam table at the gynecologist’s office, wrapped up in my flimsy makeshift covering that grows damp under my ass from nervous sweating. “It’ll probably leave a wet spot when I stand up.” But suddenly I’m distracted. I look at the door curiously; it’s bursting into a sea of frolicking purple and yellow lights, glittering and intertwining in a languid sort of way. Looking to the window to try to confirm the source of this light, I see the blinds are drawn over this grey and dismal day and confused, I glance back at the door then down at my hands where the individual particles hurriedly dance around. The realization hits me. I am hallucinating, tripping HARD on Xanax, but I’ve never been less concerned in my life.

The doctor then walks into the exam room. She hates me. This is my third visit to her in the past few months after two unsuccessful attempts at a pap smear that ended in panic attack and pain-induced tears. I know that she doesn’t believe me when I say how painful it is when she attempts to put the speculum inside me, when I try to support my argument by saying that I can’t even use tampons like a normal person because the one time I did I ended up curled on the floor, crying in pain. It should go without saying that here, at 21 years old, I’m also a virgin, never having had a boyfriend because I was afraid of the pain of impending sex, and too afraid to even take sexual matters into my own hands, literally. But the doctor doesn’t believe me, tells me that sex, let alone a pap smear, should not hurt and that the pain is a figment of my imagination I just need to get over.

This time, however, in my dazed, hallucinogenic state due to the heavy dose of Xanax she prescribed me, the exam is successful. “I’m usually not very good at these, but I’m on drugs this time,” I slur matter-of-factly, mid-exam. “Yeah I know,” she replies as she finishes up, unenthused and relieved to finally get this over with, and then disappears as quickly as she arrived. “What a bitch,” I think while I wait in the building’s lobby to be picked up, staring blankly at the undulating overhead lights and texting complete nonsense to my friends. “She doesn’t even know.”

Unfortunately that was just the very beginning of my struggle with female pain, a struggle dealing with a lot of doctors who didn’t understand, maybe didn’t even care about my problems, multiple (negative) tests for STDs, and more drugs, creams, and homeopathic remedies than I can even remember. Sadly, it was also a struggle that I kept hidden inside for many years for the fear of the shame I’d feel at letting others know about this freakish inability for me to take part in one of life’s most natural processes.

By the time I was 23, the pain started to change for the worse, evolving from a simple matter of pain upon vaginal entry to an everyday burning and stabbing feeling around my vulva. Of course I got into a Google-symptom-checking frenzy, convincing myself I had cancer of the clitoris and then doing everything in my power to make it appear that the simple act of wearing pants didn’t cause me great discomfort. But I hid it well, too well, and continued to do things like spin class, half-marathon training and masturbating all while convincing myself that one day I’ll wake up and it will all be over.

At the age of 24 I had my first real boyfriend. He knew that my sexual experience level was zero and that my overall relationship experiences were minimal, and that’s being generous. He was totally ok with it though because he, at age 30, was one of those reformed virgin sorts, a guy who had married quickly and early in his past, “found himself” after his divorce, and reclaimed his virginity after converting to Islam. He was also the “fuck it” sort that didn’t stick to his word very well (so why did I date him again??) and I knew inside that he’d cave and, though it may take longer than normal, our sexual relationship would begin soon enough.

We did talk about sex a lot though, took part in everything but, and although it was all new and fun for me, nothing stopped the pain from having a role in every single interaction. And still I hid it for a long time, biting back the urge to flinch and pull back at times, telling myself that this was normal and if everyone else could fight it, I could too. I remember the day that I told him about it though, an explanation I gave through nervous tears, unable to describe the root cause and expecting a breakup. It didn’t happen though, but neither did support. My greatest secret and source of anguish went in one ear and out the other of the first person I told and so I continued to suffer in embarrassed silence.

We finally did have sex after about 6 months together, it was sloppy and drunken and I fought back tears of agony for a long time before the pain was too much and I stopped it altogether. And then I think he just fell asleep. I, however, shuffled to the bathroom to pee only to discover copious amounts of blood on the toilet paper and spent the next 10 minutes crying on the floor trying not to pass out or have a panic attack. Or both. I don’t like blood. Yet, I felt good about it, the deed was done, and it could only get better from here. Right? But something changed. He regretted it happening, withdrew, and 5 days later, on the day my grandmother passed away of all days, he ended it completely. He was stone-faced and cold, so fucking unfeeling. And unfortunately, it took a long time before I could really feel true and pure hatred for him because, due to this unexplainable pain, his actions neared justification in my mind and I blamed myself, my condition, for it all.

Two long weeks later I Googled, “pain in vagina, doctors in Washington D.C.” and surprisingly, it wasn’t long before I found a doctor in the city, a woman named Lucy who specialized in treating female pain conditions. I remember sweating bullets as I called the office to make an appointment, wondering if it was all a scam, if the first visit fee would be a waste of money, and if she would tell me what the other doctors told me, that it was all in my head, and send me away with another negative herpes test. But meeting Lucy was the moment my life changed.

Lucy was matter-of-fact but warm and understanding all the same. And I had an exam with her unlike any other. She listened, taking in all of the details of my pain. She had me look at myself with a mirror, work with me to determine the most painful areas and helped me to understand that the extreme inflammation and redness that I had, that the pain I felt, was not normal. Furthermore, she was able to say, “I know what’s going on. You have vulvodynia and vulvar vestibulitis and I’m going to do everything I can to help you get better.” And then I sobbed in her office like a child, letting the anxiety, the unknown, and the post-breakup stress melt away at last. I cried a lot back then.

That was a little over 2 years ago and at the time I could not have imagined how much I would learn about this chronic pain condition and the endless steps I would take in the very trial-and-error recovery process.

First, the condition. Lucy gave me a lot of information, filling me in that the cause is relatively unknown but most likely from the years and years I was on unnecessary birth control (I had no period by the time I was 19 and this was the apparent cure. Lucy later discovered my PCOS which I’m now treating non-hormonally) where it wreaked havoc on my vagina. It caused an unending cycle of inflammation and nerve provocation to the point where my vaginal opening became an epicenter of pain that radiated to the rest of my genitalia. The vulvar vestibulitis, pain upon vaginal entry, was only affected by touch but the generalized vulvodynia, which caused the overall external pain without touch, is what made pants and chairs my mortal enemy.

Second, the treatment. I started on estrogen gel applied topically. And it worked, taking the intense redness and dialing it down several notches. But not enough. Over the years it ramped up to anti-seizure medications and anti-depressants to help with the nerve sensitivity, which got me to the point of 60–70% better. But unfortunately this caused side effects like extreme dry mouth, profuse sweating most of the day, severe constipation, hand tremors, difficult urination, crazy-ass dreams, tiredness, and a symptom I like to call “constant drunk eyes.” About 9 months ago, it got to the point where the side effects got to be too much and I received permission to go off the anti-depressants. And I was fine for a few months (expect weaning off the meds made me easily vomit and black out every time I drank, but that’s a story for a different time) until I began to relapse. By this past November I was almost back to where I started. In addition, I’d attempted sex a few more times only to be met with the same painful ends. After a few more visits with Lucy and additional drug and treatment methods, she was honest with me. “I think it’s time that we discuss surgery.”

And so we did. I met with the surgeon and learned of the process of a vestibulectomy, a procedure that would, hopefully, lead me to a lifetime of 90–95% recovered. In simplest terms, this would eradicate the damaged tissue of the vulva, replace it with nerveless tissue from inside the vagina and by eliminating this root cause of pain, would greatly remove the rest of the pain that radiated from this. It was painful to think about, enough to make most people squeamish, but when I learned of this procedure I only felt a swelling of great hope and wondered how soon I could get it done.

I underwent the procedure nearly a month ago and spent the majority of my 2 weeks off work thinking so much about how I got to this point. I may just look like someone lounging on the couch, an ice pack perpetually covering the 20 or so stitches in my nether regions but there’s so much more behind this. There are years and years of pain and suffering, so much more agonizing than the pain of recovering from surgery itself. There’s anxiety mixed with a lot a lot a lot of hope that the future of my sex life and general quality of life is brighter. And there’s an intense desire to share these struggles and this hope with the thousands of women out there also suffering.

We don’t like to talk about sexual pain and women’s health issues, and that’s a huge shame. Even my own gynecologists of my past refused to acknowledge a possibility that there may be an actual, complicated issue and blamed me instead. They nurtured a world where I felt alone, weak, and abnormal, where healthcare covered things like STD tests (which is great!) but not my sexual well being and happiness from a pain condition that most people don’t know about (not so great). It took a deviation from the healthcare system and seeking out a specialist for answers, treatment, and peace of mind that I was lucky enough to afford. I also had a network of very close friends and family who where sooo supportive throughout the suffering and recovery. But this is not the case for everyone.

It hurts me to think of how many women are suffering in silence like I was, who are told they are making things up, and who are shunted into keeping it locked up inside to avoid humiliation. But it doesn’t have to be like that. People may be uncomfortable to hear me talk so openly about my vagina but in the end it all boils down to taking care of and control over health and happiness and treating a condition that I didn’t ask for and that I will not let define me. And it’s a right that all women… no, all people deserve. To all of the women out there suffering with pain, it doesn’t have to be a solo battle, there are answers and there are ways out. Despite ups and downs, a future without pain is an option.

“Is it over?” I asked, as I came out of the anesthesia from my surgery. “Yes, it’s over,” the nurse replied. “It’s over.”