I am a 30 year old (cis)woman who has been on a journey of discovery in sexual medicine for more than 5 years. It took me 2 years to get correctly diagnosed with primary, provoked vestibulodynia. Those two years were extremely difficult, and I want people to be able to find good information and get a more accurate diagnosis faster than I did. Incorrect diagnoses led me to treatments that did more harm than good and to psychological trauma that I will spend many years working to recover from.
I am not a medical doctor, but I am a scientist. I have PhD in infectious diseases and study microbiology and genetics. Because of my background, I have access to scientific journals where scientists publish their research. I can locate and access information more easily than most. Despite that, it took me a long time to find answers. I want to do what I can to share good, scientific information and make the road to diagnosis and recovery easier for others.
I want women to be able to find good information and get a more accurate diagnosis faster than I did.
When I got married in early 2016 as a virgin, I had no idea that three years later I still wouldn’t be able to have intercourse with my husband. I had never been able to use a tampon, but I hadn’t pursed it very seriously. I was content to give that up and saw it as a luxury that I didn’t need. I didn’t even think about it as a sign that I had a more serious problem. I had gone to get a pap smear for the first time a few months before the wedding and had a horrible experience. I was screaming and crying, but the doctor didn’t even acknowledge it. So, I just assumed that it was supposed to hurt like that, at least the first time. (In hindsight, the behavior of that gynecologist makes me so angry! She should not have assumed that I was “being dramatic” because it was my first time. A pap smear should not hurt!)
On our wedding night I was nervous of course, so when our attempt wasn’t successful, I brushed it off. So many couples don’t even bother to have sex on their wedding night because the day is so emotionally and physically exhausting. The pizza man knocked on the door and I was content to let it go, eat some pizza, and watch Friends.
On our honeymoon cruise, I started to get frustrated at the lack of success. Every time we attempted penetration, it felt like he was hitting a wall, as if there wasn’t even an opening at all, and it burned. I typically refer to it as feeling like “fire and lava.” I also have sharp pain sometimes and it feels like I’m being repeatedly stabbed with a knife. From week one, sex usually ended with me in a sobbing heap. Saving sex for marriage was very important to me, and I viewed my virginity as an important gift for my husband. When it spiraled into disaster I felt like a failure and I felt like I was broken. (Update: I’m understanding now how the church hurt me with these ideas when I was young. I’m processing it.)
For anyone, no matter how long you’ve been married, painful sex takes a toll on you and your relationship. I struggle with my perspective on sex and intimacy in general.
Because penetration always hurts, and it is natural to anticipate a sexual encounter escalating, I always anticipate pain. It is also logical to avoid situations that cause you pain, and I quickly started to avoid intimacy altogether - which I felt guilty about. The guilt, shame, and brokenness can be overwhelming sometimes, and I know it will take me a long time to work through these feeling and reprogram my response to intimacy.
Early on, I spent some time Googling my symptoms and thought that I had vaginismus. Vaginismus is condition in which the pelvic floor muscles tighten subconsciously, like closing your eye instinctively if something is going to poke it. It is not an active decision, and it takes a lot of therapy to learn to control those muscles. I was quick to attribute my symptoms to vaginismus. It seemed to fit my experience and I wanted an answer.
I ordered the books and dilator kit from vaginismus.com and started following the home therapy program. Vaginal dilators are plastic (or silicone, or glass, etc.) tubes of increasing size that are used to stretch/train the vagina. I liked the set that came with the workbook because it had a lot of sizes, so the changes between sizes were very gradual. Over the next few months, I was able to get through the first 2 or 3 dilators, which equates to a diameter of less than an inch. But the process was not fun. I dreaded the dilator therapy because it hurt. I didn’t want to spend time every night causing myself pain, and I wasn’t very compliant.
It took me more than 6 months to work up the courage to try talking to another gynecologist.
I had gone once before getting married and she did a typical speculum exam despite my screaming and crying. Needless to say, I wasn’t going back there. I asked friends for a recommendation and chose someone that had some awards for her practice. She had to be good, right? I was still very nervous about her hurting me and took my husband with me for support. She did listen to my story and was at least willing to diagnose me with a problem: vaginismus. She told me that vaginismus is mostly a psychological problem, because the problem isn’t with the muscles themselves, but the ability to control them. I got a lot of “it’s all in your head” and “if you just relax, it won’t hurt.” (This is BS, by the way.) She gave me slightly different instructions for working with the dilators, encouraged me to continue, and said to come back to see her again in a month or so. The added pressure of an upcoming appointment did increase my compliance with the dilator therapy, but I hated it. I dreaded it every night, and I felt so guilty about dreading it, even when I did what I was supposed to do. I felt like I should want to fix myself for my husband and our relationship, but I was still not enthusiastic about it.
My next visit to the gynecologist was my last for a long time. I told her that I was indeed progressing through the dilator sizes (though not as quickly as she wanted), but the process of putting the dilator in and out was very painful. Once I had the dilator in (which could take 5-7 minutes), the pain was manageable during the static part of the exercise. Her solution to this was the put the dilator in as fast as possible. I was clear that I was uncomfortable with that idea because it sounded extremely painful. She took the next largest size dilator that I hadn’t even used successfully at home, quickly shoved it into my vagina, and said “See - you CAN do it!” I never went back.
For about 8 months after that, I essentially ignored the problem. I didn’t do any more dilator therapy and I didn’t talk to any more doctors.
I often say that I feel like a mouse in a psychology experiment that gets shocked every time it goes for the cheese - eventually the mouse stops trying to get the cheese, and I had completely given up. As usual, I felt guilty about it. My husband, fortunately, was understanding and patient with me during my denial. He could understand my perspective of avoiding pain and always encouraged me to not feel so guilty or broken. But those feeling were so deeply embedded in me now that I felt trapped.
My mom knew what was going on from very early on. I’ve always had a close relationship with my mom and I had even asked her about sex a couple weeks before the wedding because I was clueless and nervous. She regularly asked me how I was doing and was concerned that I was avoiding the problem entirely. She worried that my husband would give up on me and leave. I’m so lucky that he didn’t, because I was not trying at all. Every time I hear a story from another woman who is dealing with all of this AND the pain of being abandoned because of it, my heart breaks. The trauma is severe enough without adding abandonment to the mix.
Eventually, I gave in and agreed to try another doctor. I asked around again and settled on a different doctor in the same practice. I wanted to go somewhere that at least had a record showing I had a real problem. I didn’t want to risk going to a completely new office where I would be told nothing was wrong with me at all. Again, I took my husband with me for support. This gynecologist was the best I’d seen so far and the beginning of my path to recovery. She listened and had sense enough not to subject me to another traumatic, painful exam. She told me to see a sexual medicine specialist in DC, Dr. Rachel Rubin. Praise God for this information!
I didn’t even know that sexual medicine specialists existed!
I saw Dr. Rubin a few weeks later in December 2017 (now just 2 months shy of our second wedding anniversary) and it changed my life. She listened to me and my husband explain what was going on for at least 30 minutes. How many doctors do that these days? She wanted to hear all the details from the very beginning and was visibly upset when I told her about my experiences with the first two gynecologists. I could immediately sense how much she cares for her patients and how passionate she is about helping find solutions. That was a much needed change! After talking, the pelvic exam was completely different from what the gynecologists had done. Most gynecology appointments are routine check ups (and they usually don’t even ask about sex or give you an opportunity to voice concerns) and they go straight for the speculum. Once a speculum is inserted, a lot of the vulvar anatomy cannot be seen or examined, so they don’t really look. This was the complete opposite. Dr. Rubin was very vocal and explained what she was doing the entire time - and even gave me a mirror so I could see as well! To determine the precise location of my pain, she did what is referred to as a q-tip test. A cotton q-tip is used to gently touch each structure individually and the pain level is recorded for each site. I did not have pain in my labia majora or labia minora. I had moderate pain around my clitoris. I had extreme pain throughout my entire vestibule. The exam stopped after the q-tip test, as she had the essential information and didn’t want to cause me additional pain on the first day.
We went back to the office and talked, once again, for at least 30 minutes. Diagnosis: primary provoked vestibulodynia, very likely neuroproliferative type; hypertonic pelvic floor; moderate clitoral adhesions. Vestibulodynia refers to pain that is localized to the vestibule. Provoked means that the vestibule only hurts when touched or otherwise provoked, not 24/7. Primary means that I’ve had the condition my entire life, it didn’t develop later in life as a result of something else. Clitoral adhesions are when the hood of the clitoris adheres to the head of the clitoris. Therefore, the hood cannot pull back during arousal and secretions can collect underneath the adhesions, leading to irritation and pain. Hypertonic pelvic floor dysfunction means that the muscles of my pelvic floor are very tense/tight. Dr. Rubin spent a lot of time explaining all the anatomy and conditions (with pictures!) to make sure we were properly educated. Education is so important for understanding and recovery!
Dr. Rubin explained that I’d probably had the vestibule pain forever, which is why I could never use a tampon. And explained that nearly all women with vestibulodynia have pelvic floor dysfunction because the muscles tense up in response to pain. Imagine that someone is about to punch you in the shoulder- you’ll probably tense up the majority of your upper body in response. It’s the same idea with the pelvic floor. When everyday tasks like wiping after using the bathroom, wearing tight clothes, and sitting provoke pain, the muscles spend too much time tense. When muscles are perpetually tense, they accumulate trigger points/knots and are unable to fully lengthen when relaxed. Pelvic floor dysfunction can explain my lower back pain, hip pain, urinary retention, urinary frequency, and chronic constipation. I had no idea that all my other “minor issues” were related to this problem! My collection of symptoms is a good example of needing to treat patients as whole people and to look at the possible interrelatedness of all symptoms.
Meeting a sexual medicine specialist encouraged me to be hopeful again.
Dr. Rubin has seen many patients with vestibulodynia and many have had complete relief from pain! We walked through all the treatment options we would try and in what order, with surgery being the last resort, though she accurately anticipated from the beginning that I would end up there. Another important aspect of my treatment was building a team of other doctors to help me. A sexmed specialist could medically treat my vestibulodynia, but I also needed a pelvic floor physical therapist to work on my muscles, and a sex therapist to work on my mind.
The next eight months consisted of my trying all the “easy” treatments that might work. I went to physical therapy weekly to help relieve tension in my muscles and release my seemingly endless trigger points. I tried topical hormones on the vestibule, then topical nerve blockers. All the while, doing my best to consistently do my home dilator therapy (in the correct way, finally!) and stretches of the pelvic floor and nearby muscles. I even tried suppositories of muscle relaxers that dissolve in the vagina. I did make progress on my pelvic floor dysfunction in those eight months, but not nearly enough. Towards the end of that time, if I played my cards right and had PT in the morning and did a lot of prep work (warm bath, extensive dilators), I was able to achieve penetration with my husband. Twice! It still hurt – A LOT! – but I was crying tears of joy instead of tears of heartbreak those two nights. Hope was brewing again that maybe I could someday have enjoyable intercourse.
After eight months, Dr. Rubin and I agreed that I had sufficiently exhausted my other options and began discussing the surgery in earnest. I had been processing the idea of it the entire time and felt ready to make that leap. The surgery to remove the vestibule tissue, called a vestibulectomy, has a long recovery time and requires commitment to take a significant amount of time off from physical activity. We did an important test where the vestibule tissue alone was numbed and the q-tip test repeated. My pain was gone! I was able to insert the largest dilator I’d ever used (about the size of my husband) and it didn’t hurt very much. We were now fully confident that the surgery was a good option for me.
We scheduled the surgery for a couple of months later when I would be able to take 4-6 weeks off from work for recovery. I was a graduate student getting a PhD and I worked in a microbiology lab. My job was a moderately physical one most of the time and I was going to need to stay at home and lay down a lot. I timed the surgery when I could spend a long period writing from the comfort of my bed and not feel like I was falling behind.
I shared more details about my surgery, recovery, physical therapy, psychology appointments, and more in blog posts, but I wanted to share the beginning of my story here. My hope is that hearing it will help you on your own journey. I understand how hard this path is to walk, but there is hope! I hope that you will feel less alone and isolated by your struggle, and find comfort in knowing there are others who are also on this road and there are answers to be found. My goal is that by sharing my story, and other patient’s stories, and collecting good, accurate information about the variety of conditions that can cause pelvic pain, it will be easier for you to find a diagnosis than it was for me. I didn’t even know that sexual medicine was a field of medicine - with specialists dedicated to sexual health! But now you do, and that is the best place to start.
I don’t use my real name because I am a science professor… and my students have Google. I want to share as much information as possible, no matter how personal, because I think it is helpful. I feel more comfortable doing that anonymously. If you want to get to know me more, send me an email! I’m always up for talking with people.
*Updated in May 2019, with permission, to include Dr. Rubin’s name.