Early awareness of vaginismus. Heidi’s story pre procedure
In the questionnaire that patients receive they are asked to comment about when they were first aware of vaginismus. The following “WOW” story was written by a 24 year old Pacik grade 5 primary vaginismus patient.
I first discovered vaginismus when I was 11 or 12 and tried to use my first tampon. I struggled for hours and just kept feeling like I hit a wall, I thought I was born without the right hole. I was f
rustrated and embarrassed, but my mom told me that it was fine to use pads, so after that I just didn’t worry about it and assumed it was something normal that would change as I got older. When I was 17 and tried to have sex for the first time, I experienced that same sensation of hitting a wall, and then I started thinking that something was wrong with me. When my primary doctor at the time tried to do a pap smear and couldn’t even use her finger, she just laughed and said, “how will you have sex if you can’t even get through this?” I felt embarrassed and confused, but I mostly felt angry because it seemed completely unfair that I was (or thought I was) the only person having to deal with this.
From ages 18-22, I went to a few different doctors who all told me to try to relax, have a drink, that it was all in my head. One doctor told me that it was physically impossible for me to be feeling pain when she only touched the entry of my vagina. I tried having sex after being intoxicated, and was surprised that my body still wouldn’t allow for penetration. I was so desperate to “be normal” that I even had a relationship with a guy who told me that he had dated girls like this before, and that I just needed to be strongly stimulated. Unfortunately, his forceful penetration probably just strengthened my vaginismus, and this is when I contracted herpes. At that point, I started researching online and diagnosed myself with vaginismus. I bought the dilators but was too scared to use them. Just the thought of using them made me feel sick to my stomach. For a while I just focused on school and on friendships and thought I’d just live my life without sex.
Onset vaginismus age 5-6
Eventually, I had an honest conversation with my mom to try to understand why I was having this problem. She told me that when I was 5 or 6, I would sometimes not stay on the toilet long enough and some urine would end up in my underwear, so she took me to the doctor. The doctor thought I might have a bladder infection and wanted to treat it aggressively, starting by inserting a small camera inside me to examine the organs. My mom thought it seemed excessive, but I was her first kid and she trusted the doctor. She said I was very nervous and that the nurses had to physically hold me down while the doctor did the insertion. Afterwards, she said I was very quiet and wouldn’t talk to anyone for a few days. I have a somewhat blurry memory of having a bladder infection as a kid, but I never knew these details. I am a pretty sensitive person and I have a lot of difficulties with doctor appointments (even getting my blood pressure checks make me feel so nervous that I start laughing and tearing up). I believe this incident is what trained my pelvic muscles to have the automatic spasm response to insertion.
Knowing the root of my vaginismus helped me accept the reality that this is something I do have to deal with, that it isn’t going to go away on its own, and that I have to re-train my muscles out of a response that they’ve been doing for 20 years. With a better understanding of it, I have been able to work through my feelings of shame and confusion. My boyfriend is very supportive and understanding and never pressures me. I have been able to use the first dilator now. It took me 1 year to work up to the second dilator. Sometimes I can use it, but sometimes I can’t, and I feel like I don’t really have any control over it. At this point, my frustration is that I finally feel relaxed in my mind, I am not scared or nervous, but I still can’t stop my muscles from tightening. It has been such a long and frustrating process. I read about the botox treatment online and I felt happier than ever knowing that just the possibility was out there.
She continues
Vaginismus has caused us to go through a lot of difficult emotions. In the beginning, we each thought something was “wrong” with us. I thought that I was physically disfigured in some way, he thought that it was something he was doing. We had to go through a lot of embarrassment and feelings of rejection, confusion and disappointment. At the same time, however, we never turned on each other. Although I still wouldn’t choose to have vaginismus, it did s
trengthen our relationship. My partner has been patient and understanding. He is happy when we try to be together, and he accepts when we do not. We are extremely close and neither of us feel that we need sex to validate our relationship. At this point, however, I just feel ready to move on. In the beginning of our relationship when I did not know I had vaginismus, we tried a lot of different ways to have intercourse. Now that I know I have vaginismus, I’ve been trying to use the dilators and I feel that it lowers my desire for sex, and we usually don’t try more than once a month. Our relationship has a strong foundation and we love each other, we’ve talked about kids and about marriage, and I believe we would stay together even if intercourse was never possible…. However, I feel that we deserve to enjoy sex together and I am ready to take the steps that I need to finally make intercourse possible.
Commentary Dr. Pacik
Stories of being held down as a child to do a procedure, such as catheterization or in this patient the insertion of a camera, are rare, yet the results can be profound and the effects can be lifelong. We do not yet know the cause of vaginismus, and there may very well be multiple causes. I do feel that psychologic and/or physical trauma do play a role in the development of vaginismus.
Postscript #1
On a separate note she writes: “In other news, I am now officially engaged! I’ve also looked at the sexsmart website that you suggested and I do think some of the exercises will be helpful for us to maintain intimacy together right now. I’m so excited to come for the treatment in March and begin the next chapter of my life.”
Postscript from Patient: Pregnant 5 months post-treatment
About 5 months after receiving treatment, I became pregnant! I have been able to make it through the vaginal ultra sound, which terrified me, and the pregnancy is going well. I used to think having kids was something I would never get to experience; in fact I didn’t even let myself consider it because it seemed so impossible. If I hadn’t found Dr. Pacik and his wonderful team, it very well might have remained an unfulfilled dream. Just goes to show that anything is possible – don’t give up!
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