Adrianna’s Story Oct. 2010
- Age: 20
- Diagnosis: primary grade 5 vaginismus
- Duration: 8 years
- Discovery: attempt to use tampons
- Other: no religious upbringing, no libido issues, no sexual shame, no bodily inhibitions, no history of abuse or prior trauma
- Findings: Maximum (4+/4) spasm of the entry muscle
- Treatment: 150 units of intravaginal Botox injections, Sensorcaine injections and progressive dilation under anesthesia; post procedure supervised dilation
- Treatment to intercourse: 15 days
I discovered the term vaginismus by accident when I was 14, searching for a website that would tell me what I was doing wrong. I’d known in some sense that I had vaginismus since I was 12. Something just wasn’t right.
I don’t fit many of the assumptions of a vaginismus patient. Though every case is different, vaginismus is usually thought to be a psychologically based reflex, often based on abuse, religion, trauma, or shame about sex. I grew up in a home that was appropriately supportive of sexuality and as a young teen had healthy sexual (without intercourse) relationships. I never planned to wait until marriage and made my first attempt to have sex at sixteen, which ended with me in tears and my boyfriend wondering what he had done wrong. As far as anyone knows, I had no reason to have vaginismus. It was probably just a combination of high neuroticism and squeamishness about body parts and nothing else. Because of this, I consider myself a bit of a strange case.
After 8 years of failing to use tampons, missing pool parties, kicking gynecologists and pitifully informing boyfriends of this seemingly incurable problem, I was at the max point of desperation. I was terrified that I wouldn’t be able to hold any kind of stable relationship I wanted. I debated trying to skip every period with birth control. Gynecologists were confused – we knew the term for what I had, but there was nothing for therapy to fix and no place for dilators to go. I wasn’t fearful of sex or penetration, and libido and orgasm had never been issues. I was told over and over that, with the right person and the right timing, and maybe a Xanax, I would naturally just… get over it. But sedatives did nothing. Relaxation, breathing, and moving slow did nothing. Sexual comfort, attraction, and a strong relationship did nothing. I could do kegels like a champion and, as a psychology student, had already ruled out hypnosis. Therapists didn’t seem to understand what the issue was. Every attempt at any insertion I made, even with a q-tip, hit a wall created by a malfunction of my own body. Opportunities came and went and that moment of breakthrough did not come.
In a relationship at 20, sex eventually becomes an issue. My boyfriend comforted me, saying that my problem wasn’t a huge deal, that it didn’t mean I was less worthwhile to him. At the same time, we were at a loss for solutions, and I had no guess for when I would be fixed if ever. I felt like it was already over, and that I had ruined everything with a great guy over something out of my control. A few nights later, I found a study citing Botox for use in vaginismus overseas, and later found Dr. Pacik’s office, the only place in the US that offered it. I cried. It was the holy grail. None of the treatment options available ever clicked for me. For the first time, I felt like someone understood what having this condition was actually like, and knew how to fix it in a way that wouldn’t waste years with no results.
On March 28 I booked tickets for my mother and I from Chicago to New Hampshire before I could psych myself out, and flew out in April. Dr. Pacik assured me that everyone was terrified of it not working and not being able to get over it, but that in almost every case, it worked. I still had doubts. As a result, I was a twitchy and screaming patient unwilling to let Pacik’s staff get near me. But under anesthesia, I got confirmation of what I always suspected and what Dr. Pacik believes is the cause of vaginismus – even under heavy sedation, my muscles spasmed and locked down to form an opening the size of a pinhole. It was a reflex totally out of my mental control, that even my unconscious could override. After I woke up, I realized insertion had to be possible. I didn’t believe my body would continue to accept the treatment, but clearly, it could. I can’t say enough good things about the staff here before/during/after the procedure itself. Even the anesthesiologist was exceptionally understanding of my paranoia about being under general anesthesia, and made especially sure I wouldn’t feel sick upon waking up, something that was very important to me and eased a lot of my anxiety.
I can’t sugarcoat this – dilator therapy is not an easy task with or without Botox. It’s a week of intense soreness, some blood, and planning your day around being laid up on the sofa while dilating and not being able to move or walk. It’s a giant silicone rod between your legs holding your body open and stretching. This kind of vaginal yoga isn’t clean and it definitely isn’t pretty. I lived in a dorm while doing this, and I snuck around to clean dilators in secret at 4 a.m. and do the therapy without anyone, including my roommate, knowing. But with every successive try it got easier and easier. Dr. Pacik and his staff were encouraging the whole way. They knew the method worked and how to get even stubborn and squeamish patients to do what needed to be done. I got an email each week for a while asking how I was doing, a gentle reminder not to give up when progress seemed to stagnate. To Pacik’s group, you aren’t a case file. You’re one of a very select group lucky enough to be the pioneers of a cure – maybe the first legitimate procedure that can be called a cure for vaginismus at all.
As a baseline, every patient starts with a dilator on the high side of the size spectrum and adjusts up or down accordingly. I am proud to say that despite my stubbornness, and with the serious help of Ellen’s personal coaching, I never dropped to a smaller dilator even in the pre-Botox phase (when your body still does resist a bit). I never needed the numbing lubricant for exercises and preferred to push past the discomfort the hard way, ready to conquer this through brute force. Once the Botox kicked in, it got exponentially easier. Unlike other patients who have long-term partners or are married, I opted NOT to involve my boyfriend in this process until the very end. He had a vague idea of what I had done but didn’t push the issue, and the privacy really benefitted my ability to recover. I wanted my first sexual experience to happen organically. In just about 15 days after arriving home, with a lot of Pjur Eros silicone lube (Astroglide is terrible, by the way, if you are glycerin-sensitive), sex happened in the same way any other first time would – slow but not cautious, aware of my body’s reactions without giving in to old fears. After the first nervousness of spontaneously reverting back to my former ways and becoming a vagina vicegrip mid-thrust, I relaxed, it became easy, and laugh-cried a bit as I finished my first (and also successful) attempt. I have had a fantastic and mutually fulfilling sexual relationship since. The boyfriend is thrilled his patient investment in me paid off.
I read from Dr. Pacik’s other patients, as well as talked to Ellen, about how many women get it into their heads that sex is excruciatingly painful and shameful. I always had an idea in my head of the general discomfort initial penetration might cause, and was confused why I was always in so much more pain than other people seemed to be just using a tampon, let alone anything bigger. I wondered if I just wasn’t coping properly and was being a wimp about average pain. After I had the procedure, I realized that my body was NOT behaving normally, and that though some slight discomfort is expected, severe pain and panic is not.
It’s been 6 months this month since I had the procedure, and now the FDA approved Dr. Pacik’s study of using Botox to treat vaginismus. There are probably more cases just like mine, who I strongly hope will find and read this testimony (because not many other stories exist that relate to very young women with this problem – I went into it more or less on a desperate whim). So often people take symptoms of vaginismus for a sign of some sexual immaturity, of ‘not being ready’ or ‘not being comfortable.’ Certainly those are elements of it, but it only reinforces the idea that girls should be waiting for some magic perfect moment, not addressing the signs at their onset. I wish I could tell girls who have never been able to even LOOK at themselves down there, let alone put something in, that it’s not a matter of squeamishness or needing to wait longer – and that it is NOT their fault for feeling pain. Reflexes are sometimes created for no tangible reason, and it certainly was the case for me. Girls aren’t supposed to address or discuss their sexuality when they are young, and because of that this perpetual cycle of attempt, failure, and reinforced fear continues for far longer than it should. At 20, I am one of the youngest unmarried women treated with Botox for this condition, which means not only that I recognized the flaw in my sexuality earlier than is normal for vaginismus patients, but that many more than me have suffered far longer. I am actually extremely lucky to already be past it and on to a highly pleasurable sexual life.
I used to cross my legs out of reflex when I’d so much as think about inserting anything, even my own finger or a pitiful little cotton swab. That self-protective instinct is far stronger than we’re raised to think, and it was something I underestimated as a 12 year old, thinking that I’d somehow outgrow it when the timing was right. It is my hope that more and more specialists recognize these signs and refer people to doctors who will perform this procedure that works instead of giving them a runaround of therapy and sedatives for a decade, allowing relationships and confidence to be destroyed forever in the process.
If you’re reading this, it’s probably because you are looking for a solution, and so have many other women in the same position. I was lucky to have a supportive mother who believed in the procedure, was open towards sexuality, and didn’t shut me in the dark to avoid talking about my serious, life-altering personal issues. I was lucky to have a boyfriend that would’ve cared about me regardless, and who was patiently waiting until it was resolved. At some point, everyone with vaginismus reaches a tipping point, whether it’s ten years into a marriage or immediately upon discovering that something just isn’t right. I hope that when women like me reach their rock bottom, they come to Dr. Pacik and his staff as soon as possible. I want every woman with vaginismus who desperately hopes to enjoy a normal life to reach out and find the compassion I did here in the cozy Manchester house. I can’t imagine what my life would be like had I not found this clinic and taken immediate action. Thank you, Dr. Pacik, Ellen, Gloria, and everyone else, for making me the normal girl I feared I might never be.