True Story: I have Vaginismus, the ‘sex is always painful’ condition

I have Vaginismus
What if sex was always, always painful for you? What if you couldn’t even use a tampon? How would you navigate dating or deal with your period? Today, O shares the story of how she’s navigated life with Vaginismus.

Tell us a little bit about yourself. 
I’m from Dallas, TX and I’m 27 years old. I recently graduated from a graduate program and am working as an entrepreneur in my field. I love personal development, meeting new people and dance. I’m working to build a semi-professional dance career on the side.

For those of us who don’t know, what is Vaginismus?
Vaginismus is a condition where it is not possible or very painful to insert anything into the vagina. The pelvic floor muscles tighten up, making insertion of anything – including tampons – difficult and painful.
It is associated with a subconscious response that cannot be controlled and happens automatically. It’s likely that many women, young and old have Vaginismus but haven’t been diagnosed.  Vaginismus can be linked to trauma of some sort (including non-sexual trauma), but it can happen even if you did not experience any traumatic event.
The good news is that it is 100% cure-able. No matter how long it takes you (usually between three months and five years of physical therapy or at-home exercises), you can be cured.

When did you start to have symptoms? Do you know what brought them on?

I can’t say when I had symptoms because I started being sexually active relatively late in life and I wasn’t raised to use tampons.
I noticed in college I was having issues when I started trying to use a Diva Cup as an alternative to pads and couldn’t get it in. Later on, I couldn’t have intercourse with someone, even though I really, really wanted to.

I’d never had a pap-smear and the one time the doctor tried, it was too painful so we skipped it. I didn’t think that meant anything. I noticed how on TV teen pregnancies were described as “It just happened” and I’d think “How does it just happen? I have to put in a lot of effort for anything to happen.” It wasn’t until a few years ago I started dating someone who understood it was very abnormal and we went to an OB-GYN to diagnose me.

Vaginismus really ranges in severity. Does it affect your daily life?

When I’m not on my period, I don’t think it does. Since I’m adverse to tampons, there are things I have to plan for. Otherwise, I don’t really think about it.

I have recently finished almost a year’s worth of physical therapy which helped me a lot, but sometimes I have a bit of relapse. I’m in a new relationship now with a wonderful man so there are a few days where I remember I have it. But luckily, when we were first getting together, he said he would have never had known. A part of me feels like Vaginismus may have been like a “good-guy-radar” or something, like it was my body’s weird way of trying to lead me to a wonderful relationship.

What treatments have you tried? 
I was dating a guy who gave me some sort of vitamins that were meant to relax me; that didn’t work. I tried MSM which is supposed to help relax muscles and it didn’t work. I had tried a lot of things that are supposed to help you relax but none of them worked.

After I was actually diagnosed, I started doing physical therapy. The first place I went to used an electrode that kinda “zapped” my pelvic floor muscles. After three sessions, it worked! But I relapsed and then couldn’t afford that particular clinic.

I started going to a physical therapist who used a technique to physically stretch my pelvic floor muscles along with some “zapping. The zapping doesn’t hurt but the stretching does! This took much much longer to work and when I broke up with my ex, I lost motivation to keep going.

I also saw a sex-therapist. He helped a lot, actually, but after a while, I felt it was not necessary.

You’re in a committed relationship. How do you guys work around this?
Luckily, I was so head over heels in love with him that it wasn’t an issue. At first.
I thought “My physical therapy worked and I’m totally cured!” but then I had a day relapse.  I noticed that I’m sometimes hesitant to initiate anything romantic because of my history with Vaginismus. The prospect of being sensual isn’t always exciting because you associate it with disappointment, false hope, and pain. When I explained this to him, he understood. Which is good because stress of any kind makes Vaginismus symptoms WORSE.

I guess it is his calm approach that makes it feel like it is not a big deal. I realized that the biggest factor to reducing my stress was TRUST. If I felt like I had 100% trust in my partner, it was more likely to work out “down there.”

When you were dating, how would you tell men about this?

I wouldn’t say that I had a condition (because I didn’t know it was a condition until recently), but I’d say that I need to feel “ready” before intercourse. So most guys I dated would actually never, ever have sex with me because the relationship would be over before I felt “ready.”
There were some guys that got far enough and I would tell them that I was scared or nervous and that sometimes “it just doesn’t work.” And it would often be hit or miss, depending on the romantic chemistry, trust and… physics… of things. It would be extremely frustrating. There was a time where I would meet a guy I was thinking of dating and try to immediately have intercourse (and of course, it would never work and Vaginismus symptoms would be in full effect). I think during those times, I was just so frustrated and angry with myself and my body that… I dunno. I just wanted to force a round peg into a square hole.
How did your boyfriend initially react when you told him?
I didn’t mention it, but knew I had to because we were incredibly attracted to each other. I tried to post pone it as long as I could and he actually kind of enjoyed that.
We said we would do it after we got our STD test results and I would “procrastinate” on going to get tested. One day, before my test result came in, I told him that I was nervous and that I “hope it works out.” He asked me to explain more and I told him the whole story about my past and my ex and my diagnosis.

He told me that he didn’t think it would be a problem. And luckily, it wasn’t. But I did find it interesting that he didn’t think it would be a problem and every guy I ever give “the talk” to has a similar reaction. When I asked my ex about it, he said that men have a natural inclination to think that they’re gonna be the best sexual partner a girl’s ever had. Any issues a girl has with sex, he is man enough to fix it. I told my current partner and he begrudgingly agreed, haha! I know I can’t generalize men based on the opinion of just one guy I dated, but it is interesting!

What books/websites/resources/etc have helped you deal with this?

Vaginismus.com was EVERYTHING! They had a forum that gave me so much hope, I ordered my dilators from them and learned everything I know about Vaginismus from them. Highly, highly recommended.

I think it’s important to add that I found it very difficult to get treated. I had to go tell my OBGYN that I thought I had Vaginismus, explain it to her, and then have her try to probe me before I could get a referral to a pelvic floor doctor.

The pelvic floor doctor referred me to a pelvic floor physical therapy clinic that was in-network but it turned out to be too expensive. So in order to find someone who was affordable, I had to call every. single. pelvic floor PT clinic I could find. I googled and googled, called and called.

I got a lot of “Vaga-what? What is that? Excuse me?” One clinic suggested I botox my vaginal opening! Imagine getting a call back, answering your phone as you’re trying to leave work and having the receptionist ask you to speak louder as you try to explain what Vaginismus is while you’re still in your office lobby!

What’s one thing you learned from this that any of us could apply to our daily lives? 

1. When you have a problem, ask someone who has seen the effects of your problem to help you to get help. After this experience, I bring my partner with me to my therapist, doctor, school advisor, etc. I bring him everywhere. Having someone who knows what is going on but can be objective about it give information to the people who you are seeking help from is amazing. You will get so much better care.

2. When you feel like you don’t fit in or something doesn’t feel right – believe it. It means something. Even if you don’t know the name for it. Even if you don’t know what exactly is wrong, trust yourself. Something is wrong. Don’t doubt yourself.

3. You don’t need to make perfect progress. You don’t need to never have a relapse or a failure. Just keep going. Have a desire, have a goal, and keep going. No matter what. I thought because I was inconsistent with my treatment, I could never have a normal, beautiful relationship and I’m so thankful that I have proven myself wrong!

Thank you so much for sharing your story, O! Do you guys have any questions for her? 

photo credit: dominik martin // cc

10 Comments

Sharon

It’s so interesting to hear your story O, and thanks for sharing it. I suspect I suffer from a less severe form of vaginismus than O. It’s not a big issue in my life right now as my partner is not fazed by it at all, and I’m happy using pads rather than tampons like I always have. My main worry is my next pap smear. I get a free one every three years. The first one was so painful but I thought well hey, it’s the first one. Then the second one was worse and it was a doctor I had never met before who said ‘maybe take a valium next time’.

I’m trying not to worry about it but I know I’m going to find it hard to keep that appointment when it rolls around again. But I also don’t want to be the dumbass who doesn’t get tested for cervical cancer :/

It’s really reassuring to hear that O had success with treatments, it’s something I might look into in the future.

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Kate

Sharon, when you go, be sure to ask for the smaller speculum. Also I don’t think the Valium is a careless suggestion, I feel like I remember reading that recommendation when researching IUD insertion, Advil too. Hope you see this. ?

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Sharon

Thanks Kate, only seeing this now! I did feel the locum doctor thought I was being a drama queen at the time, but I’m definitely not above trying some Valium if it’ll help. Thanks for your reply 😉

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iris

Thank you for sharing your story. I am glad that the Internet was able to provide you support and awareness that doctors and sexual partners could not. There are so many less populous/advertised conditions, that doctors cannot be aware of everything, and it’s very important to be an advocate for your own health.

I have a super minor nitpick: the saying is “Square peg in a round hole”. You don’t force a round peg into a square hole, since it is missing the corners, it fits quite easily 😉

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Anonymous

I suffered from this for about 5 years in my early 20s. I did all the treatments – biofeedback therapy, “stretching”, etc. What cured it in the end? Ending my relationship, spending some time dating, and then getting together with my wonderful husband. It’s so weird, because the whole time I was struggling with the condition I was so, so certain that it wasn’t psychological. I genuinely wanted to have pain free sex with my boyfriend. I guess it must have been subconscious, because I am much happier in my current relationship and it’s never been an issue. The mind/body connection is so interesting!

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Sarah Von Bargen

That’s so interesting! I’m so glad you commented on this post – I imagine there are many, many other women in this exact situation!

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Anonymous2

I am (almost) the same!!! I was diagnosed with vulvodynia when I was 18 and it has been the longest, most difficult journey. Deep down I wasn’t happy in my relationship, and I couldn’t admit that to myself or anyone else. I just kept blaming myself – I must be depressed, I must be anxious, it’s my fault, etc. etc. After years and years of gradual erosion and physical therapy, couples therapy, sex therapy, creams, pills, you name it, we divorced last year and shortly afterward, I was in a heap at my mother’s kitchen table, crying to her “how is anyone going to love me, Mom? Who’s going to put up with this? Who’s going to just be willing to “never have sex” with me and be okay with me not even wanting to? I have so much to offer, but this is the deal-breaker for my life.” Fast forward a few months and I completely stumbled blindly into the love of my life. I was very up front with him about this issue, thinking surely he’d run, but at least it’d be best to get it overwith before I let myself fall too far. I thought I may actually be asexual, as the idea of intimacy had been so painful and sad for so long…I wondered if I even had desire for that at all. He sat and listened to me talk about it, looked down for a moment and took a deep breath, and looked at me with tears in his eyes and said “I am so so sorry you’ve had to go through this. It doesn’t matter to me. It will be my honor to tell you as many times as you need to hear it and help show you you’re perfect just as you are.” well, you can imagine that was hard to hear and actually believe, but my body must have listened… it was like overnight everything changed. I haven’t been 100% pain free in every circumstance, but I’ve been able to use tampons for the first time in my entire life, with no pain at all, and intimacy hasn’t been nearly as uncomfortable. I couldn’t believe it. I had a doctor once who told me “sometimes what our mouths can’t say, our bodies do” (she said it a bit more literally regarding the female anatomy), and when she left the exam room I think that’s when I realized that I couldn’t run from my truth anymore. Such an incredible article to read and so exciting to read Anonymous’ comment that reflects a story so similar to mine!! I’ve cursed this condition for so many years and now it sounds strange to say I’m grateful for it, but I’ve sort of embraced it as a barometer now, as a way my body is looking out for me and pointing me toward a person who’s right and good (and who I’m ridiculously attracted to!). I hope more women share their stories about this!

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Sharon

Hi there! Another Sharon here with a history of vaginismus/vulvodynia. Thank you for sharing this! Many people are unaware of these issues and it’s good to get the word out. Here is my story as brief as I can make it:

I was never quite comfortable with myself down there. The few times I tried using tampons didn’t work out and I always assumed I was too nervous and not inserting them correctly. I always declined pelvic exams and didn’t become sexually active until my mid twenties.

Vaginismus is often described as “like hitting a wall,” but my problem turned out to be quite literal. At 25 I met my boyfriend and when we tried to have sex it hurt because he was pushing against what I soon learned was a wall of tissue. I went to the doctor and my diagnosis was very traumatic as she kept on pushing at it until I was sobbing. She diagnosed me with a very rare congenital abnormality called a transverse vaginal septum. It was only a partial wall of tissue, which explained why I was always able to menstruate normally. But it was enough of an obstruction to prevent penetration, so I had surgery to have it removed.

That first appointment with her was very scarring and I was very tense at my post surgery appointments. I understand that she needed to make sure I was healing okay, but she was not very gentle and only escalated my anxiety. On top of this, she told me I needed to either start inserting tampons of gradual sizes or dilators to continue healing properly, or I would need another procedure should the vaginal canal narrow. That scary fact also did not help with the stress. I felt like I needed to start working on this ASAP. Also, while my boyfriend was very patient and supportive, dealing with something like this with someone else in the picture can make it extra difficult.

Fortunately, a good friend of mine happened to be doing physical therapy for vaginismus and recommended I try it. I was very lucky to have found a place that accepts insurance (a lot of these places are sadly out of pocket). Over the course of my treatment I came to the realization that my low dose birth control was contributing to the problem, causing a burning kind of pain. I went off the pill and had one bad flare up that lasted about a week, and then finally things improved. After nearly a year of physical therapy and also seeing a therapist, I was finally able to have a pelvic exam, use tampons, and have sex. Also by this point I had found a different doctor with a better bedside manner. Even so, I think it’s going to be some time before gyno appointments don’t make me anxious.

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Anonymous

I experienced the same thing – to this day I have not told anyone – and I really think this is one of the most challenging things my husband and I experienced in our marriage. I know that getting through this – we can probably get through anything.

I got married pretty young (22) and we didn’t believe in sex before marriage. Let’s just say that first night didn’t go well. It hurt, I felt the same “hitting a brick wall” sensation and it was a really difficult time for young, newlywed, 22 year old me.

We were recommended to see a sex-therapist, which was already a daunting experience. She recommended excersizes, slowly inserting a pinky, and when we’d managed that we’d move onto the next finger and eventually up to two fingers. I guess that’s the same as using dilators. Part of the work we had to do was literally massaging the hymen as it was too thick. Looking back, I don’t remember too many details (I’ve probably blocked them out). I do remember crying on the table in her office with her cold finger trying to help me. I am so thankful I had my loving, caring and supportive husband with me while I went through this. Because WE went through this.

Nights of “trying” to have sex, me crying, both of us feeling discouraged… eventually it took us 10 month of hard work and we overcame this challenge. Sometimes I have times where it feels tough, but I just pause, breathe and we move on, but thankfully I wouldn’t call it a relapse.

I’m thankful this happened when I was in a committed and loving marriage – I have no idea what would have happened if I’d been sexually active earlier in life and hit this problem, or what would have happened had we found out about it sooner.

I wish more people knew about this condition, and that thankfully with some work, you can push through and overcome this challenge. Sending strength to anyone reading this who is or has experienced the same. You can do it, you’re not alone.

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