3 Years Vaginismus: A Very Long Story

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• August 2, 2019 at 8:56 pm #25487
  GreenPanda

  Participant

  Hello all,
  WARNING: this is LONG. Sorry…
  I have read many posts on this group, read all the different stories about how you all cope with vaginismus. I’ve been thinking about sharing my own story for a while now… several months, actually. After mulling it over and flipping several coins (and writing down the results – heads was post, tails was not post), mulling it over some more, asking Google to flip a coin several times (same parameters as the physical coin toss) and mulling some more, I finally decided to do this.
  I have struggled with various medical conditions since birth. I was born three and a half months premature, legally blind, and with mild cerebral palsy, affecting the legs. From an early age, I was exposed to family tragedy and trauma (like my little brother dying three weeks after birth – he was preemie too), and from that, I developed a habit of dissociating from reality as I struggled to deal with my emotions. At the age of 10, after witnessing the fight that caused my parents to split up, I had such a big dissociation that I forgot everything about myself. The memories returned slowly. By the age of 14, both of my parents had re-married, and they were all fighting each other. When I dissociated, I fell into a warzone where I watched the two sides of my family fight, dying and rising to fight again. I couldn’t articulate this to anyone.
  Somehow, after surviving High School, I moved states for University. In my third year of Uni, when I turned 21, I started dating a friend from a class shared two years prior. He wooed me with pretty poems, flowers, chocolates and a beautiful stone that he said reminded him of my eyes. We went on some lovely dates, and when he introduced me to his family, I was baffled by how welcoming they were. Sex was something I gathered would happen after a time, but I hoped it wouldn’t be too soon. I had never spoken to my mother about it much as a teenager, and I didn’t have many girl friends to sit down and talk about it with. Being vision impaired, I was never taught how to use tampons, so no abnormalities were ever detected in me. At the same time, I was worried that sex would be terribly painful, as I had been diagnosed with Rheumatoid Arthritis, a chronic autoimmune disease on April 12 that year and was in moderate to severe pain every day. As we passed our days in an idyllic dating relationship, my ex would sometimes make little comments that in hindsight, were evil. “Look at you, swaggering along there!” (It was a thinly veiled insult to my CP). “You have an odd face. Normally, the upper lip sticks out more, but your lower lip does.” “You’re lucky that I like your butt, because normally guys like girls with bigger butts.” And one day, as we got off a bus, “Babies who have such severe medical intervention after they’re born aren’t meant to live.” At the time, I thought nothing of these comments. They rang no alarm bells to me, and we continued on our merry way. Sex did come though… and it was by far the worst day of my life. Worse even than the day I lost all my memories.
  It was April 24, 2016. I had gone over to his house on the Sunday, I was to go back to my on-campus accommodation the following day – ANZAC Day. We watched the movie “Braveheart”, had a delicious dinner of spaghetti that he made, and a self-saucing chocolate pudding made by his parents. Everything was fine. Later that night, he wanted to have sex. I was terrified – and feeling rather insecure after he made a comment about how “Most girls have perky nipples, yours are indented.” – but he promised to be gentle, promised to help talk me through it. It was fine for a while – I actually can’t remember much of what happened – until he tried to put a finger in me. I cried out, told him that it hurt. I remember how his lips curled into a frown, how he scowled down at me and said “That’s not right. Something doesn’t feel right, like a bone out of place.” I was horrified, and that horror… it felt cold. Like ice encasing my bones and heart. “Could it be my RA?” I asked. I was terrified, what was wrong with me? “I don’t know,” he said. He tried to put a finger in me again, and it hurt worse. He said that my vagina was unlike any he had seen before, implying deformity.
  From there, it only got worse. He rolled away from me, onto his back. Stared at the ceiling for a few moments before telling me about his previous sexual conquests. A girl he got pregnant twice who had miscarried both times (“Don’t feel sorry for them,” he snarled, referring to the dead children. “They were just mistakes!”), a girl he might have gotten pregnant, but he didn’t care (I whimpered, curling up into a ball at that), his ex before me, who had oftentimes just laid there, unresponsive, while he fucked her. After telling me that we weren’t in a relationship, because there was no sex and that we could never be in a relationship, with a bland assurance at the end (“There’s nothing wrong with being a virgin for the rest of your life!”), he slept like a baby. Peaceful, curled up in his blankets. I clung to the far side of the bed, my limbs stiff and sore, shivering with cold. I didn’t sleep a wink that night, having nightmares about cradles filled with blood, and hearing him tell me repeatedly that I would never have a family, and never be able to have a relationship. The next morning when his mother asked how I was, I bared my teeth into a mockery of a smile and said “I’m fine. How are you?” All the while, I wanted to tell her exactly what had happened, but I swallowed my words.
  When I went to see my GP about it a week after ANZAC Day, she simply looked between my legs and said “You’re small, but within normal. There’s nothing wrong with you.” The only good thing about that appointment was that she bulk-billed.
  For the last three years, this experience has burdened me with feelings of self-hatred, worthlessness and a sense that I’m not a real woman, or a human being. I feel like I have failed, fundamentally, in the most natural part of life. The vaginismus, combined with the RA and my other disabilities, makes me feel like such an outsider in this world. Like I should just go on the Mars Mission so I can be “home” with whatever aliens live there. Even though now, I have a boyfriend who is AMAZINGLY supportive and understands, who just wants to take my pain away, I still feel like this. When I “break” and we can’t have sex (we have before, but it hurt every time… I just didn’t tell him), I feel so guilty. I think that he deserves better, that I should find him someone on Tinder to hook up with, so his needs can be fulfilled. I have used dilators before, in 2018, but stopped because I was too emotionally and mentally exhausted to handle all of this, plus University work, plus applying for graduate roles. The dilators don’t help me enough to be able to be with my boyfriend, which is devastating. And with near-constant RA flares, I can’t do any pelvic floor stretches, without causing more pain. This has gotten to the point where I don’t even feel like a part of the broader animal kingdom – because if a male Labrador can mate with a female Poodle to make Labradoodles, how can I not be with a member of my supposed species?
  My ex broke up with me on ANZAC Day 2016, the 25th of April. After that, he declared that he was transgender and started transition. He treated his parents and brother like crap through that whole time. At one point in June that year, his mother messaged me, desperate and scared, asking where her firstborn child was, if I’d heard anything. I blame myself for that. If I’d just been a normal woman and spread my legs for him, would his parents have been spared this torment? If I told them now what happened, would they blame me? Am I the reason my ex turned into a monster? Or was he always a monster, just dressed in sheep’s clothing to fool the world? At one point, towards the end of 2016, I remember I emailed my ex and asked him why he told me about all his previous girlfriends when I was in such an emotionally vulnerable state. “Because I felt like it,” he said. I cut off all contact after that… and smashed several coffee cups in a fit of rage. Jealousy of what society promotes as being “the norm” – that women get exceedingly wet at the sight of someone they are attracted to and can just throw themselves onto a man’s penis with no preparation, no lube, NOTHING; that all girls and women must be “sex goddesses”, etc. – is an all-consuming emotion. I had a friend who lived for sex with her partner and she was always talking about how good it was, how excited she got when her partner proposed a special night for the two of them. I would just stare at her blankly, unable to process what she was saying. How is painless, pleasurable sex even possible? Can women really fit two penises inside them at once? I just… I don’t understand any of this. I can’t comprehend it.
  I’m in that battlefield again, only this time, the enemy is ME. How do you fight yourself? How do you get the strength to look in the mirror and see a human? To hope? To even get out of bed when your body screams at you to stay there because it’s just too painful? It’s hard to find the will to fight, some days I just lie in bed and cry over how much I hate my body. I don’t know if my vaginismus is worse because of the CP, or if that even helped cause it. I know that the CP has caused my right leg to be shorter than my left, which has twisted my pelvis… does that contribute? Or was it the stress of my childhood? Was it the war in my head? Is it made worse by RA flare ups in the joints around the hips and where my legs join to my pelvic bone? Is it worse because I’m on birth control (courtesy of the GP who said, “You’re fine”, as a precaution against the RA immunosuppressants I was on)? Not knowing anything about my body… what I can and cannot trust about this thing… only makes it worse. I was never one to have any self-esteem issues with any of my conditions as a kid… but 2016 changed that. I feel so wrong, disgusting, inhuman and unnatural that I struggle to go out and see my “human” friends and family. I’m scared of sex, now. Constantly apologizing to my boyfriend and saying that he can leave. Offering to find him someone to have sex with. He tells me to stop apologizing, to never offer him that again, and that things will be OK. It’s hard to believe him about all of that, I find.
  But I know that I have to get up. I have to plod out of bed and go about my day, about this shameful imitation of life. For my best friends from High School, who I know will never leave my side. For my boyfriend, who I thank God for every day (when I’m not cursing that omnipresent bastard for not telling me why my body is like this). I have to keep going, so I do. I have a wonderful therapist who helps me with this, and she is working to sort out the nightmares/recurring flashbacks to 24/04/2016… and while it helps to get the feelings out of the way, they quickly come back to haunt me. It’s a cycle I just can’t seem to break. Oftentimes, I distract myself (or I try to), with other things. History documentaries (from deep diving into Chernobyl, I now know way more than a layperson should about RBMK reactors…), Dungeons and Dragons with my High School friends, music… it helps a bit, I’m grateful for these distractions. But they don’t always work. I used to love creative writing, but over the years my muse has died with this condition as it consumes me.
  There have been other problems arising over the last few months when my boyfriend and I have sex – problems so severe that they leave me in agony and ill for weeks on end. The doctors have tested for every STI/STD under the sun and everything comes back negative so far. Being stuck on the medical merry-go-round with doctor upon doctor scratching their heads and sending me elsewhere all the time really does not help things. But… I’ll talk more on that later. I wanted to get my initial story out there, beyond my closest friends, my boyfriend and my mother (none of whom can really understand), for the first time in three years.
  I’m sorry this post is so long and rambly… but this is a long, and rambly story. (This is just the bare bones though…). I would like to hear how you ladies deal with these emotions? How you keep going, despite everything? And how, if you have partners who are understanding and accepting of your vaginismus, do you reconcile that support with past experiences of unsupportiveness?
  Again, sorry if this bored you because of the length, but thank you in advance to all those who read this.

  August 12, 2019 at 3:14 pm #25503
  recessivegenequeen

  Participant

  Hi GreenPanda – thank you so much for sharing your story with us. I know the kind of bravery it takes and you should be proud of yourself. It is one of the many steps on your journey that will take you to where you want to go. I’m so sorry to hear what you have been through because it’s more than any person should have to take, but the things you’ve survived are going to be the places you draw your strength from as you seek healing (more on that in a minute).

  There’s a lot to unpack here, but if you take nothing else from me, I hope you’ll try to believe me when I say there is hope for you, both for your body and for your soul. I had vaginismus too and suffered from it from ages 15 to 25 until I finally got the botox treatment from the Maze Clinic, and those years were full of the same feelings you described. I HATED my body. I HATED myself for not being a normal woman and being able to consummate close relationships with men I thought were good. I hit rock bottom and truly felt there was no escaping my plight, but I was wrong about that.

  Not everyone will have to deal with vaginismus in their lives, but almost all of us on this mortal coil will have periods of hating their body. I don’t say this to minimize how you feel, but to help you understand that it isn’t a life sentence and that there is a universe of people around you who can empathize with how you feel. You say that you didn’t always feel this way about your body, and I encourage you to try to get in touch with that past version of yourself. It’s clear that you have so much strength within you – you have lived with cerebral palsy and impaired vision and rheumatoid arthritis and still managed to have a good opinion of yourself, which is more than a lot of people could have handled. You say you are your own enemy in this fight, but I don’t believe that to be true. I hated my body for the same reasons you list, but with the benefit of hindsight I can see now how much strength it showed when I needed it, how malleable it could be in the face of change. Our bodies teach ourselves some of the most literal lessons we need to learn about life.

  I think it’s great that you’re in therapy, and it’s the first thing I would have suggested you do if you weren’t doing it already. It takes time to untangle a lifetime of hurts and memories, especially when you’re still in the middle of your pain. It seems like you have an understanding that your ex treated you badly, but you’re also asking questions about whether he would have been different if you’d been able to have sex, and I can say that he wouldn’t have. You didn’t make him trans and you didn’t make him cruel. His behavior toward you (and the behavior he describes about his exes) demonstrates that he wasn’t compassionate and that he wasn’t a supportive partner the way your current boyfriend is. This is one of the hardest things to come to terms with and it took me a long time even after I was able to successfully have sex. There were men who were good to me and there were men who were hurtful, and it’s the sad way of the world that people can be callous and unkind and unsupportive. I can’t change these men, but I CAN move forward and build relationships with people who are better and kinder and more open to the ambiguity of life.

  You ask how someone in this position keeps going, and the thing that worked for me was looking forward instead of looking back. It’s REALLY hard when you have vaginismus to do that – I spent years dwelling on the question of WHY I was this way (almost all of us who deal with the condition ask ourselves this), but there’s no way to have a conclusive answer to that question and even if we could, it wouldn’t help us fix the problem. I’m sure you’re very burnt out on seeing doctors and trying to figure out what’s wrong, but I hope you know that there are lots of options out there. You could call the Maze Clinic and get a free phone consultation and see if that helps you narrow down whether you have vaginismus or vulvodynia or something else entirely. You could try dilating again when you’re less emotionally overspent. You can build a romantic and sexual life with your wonderfully supportive boyfriend that doesn’t involve penetrative intercourse (which helps many of us survive the period when we’re navigating our relationship with vaginismus). You can keep working on your mental and emotional well-being in therapy and gain confidence in yourself. There are a lot of paths you can take, and the fact that you are looking for answers and open to change tells me you have the power to make it happen in yourself.

  I hope you’ll keep reading these forums and asking questions – you are so far from alone and we are always happy to share our collective knowledge about what we’ve experienced. I have so much faith in you!

  August 13, 2019 at 5:05 pm #25505
  Jennifer Dembo, LMSW

  Participant

  Dear GreenPanda,

  Recessivegenequeen said it best; you have endured far more than anyone should ever have to. My take away from your post is that you are one of the most courageous people I have ever encountered.

  It is absolutely essential that you continue to work with a supportive therapist. You’ve survived a lot of trauma, and you’ll definitely need a good deal of time and patience to work through all that you’ve experienced. Please continue this work – and continue to surround yourself with your close friends, your boyfriend and all other people, activities and experiences that enhance your life in positive ways.

  Your ex’s behavior was reflective of his true colors (which were present way before you ever met him). He is angry, insecure and full of self-hatred. You gave of yourself endlessly but he was not capable of receiving nor was he deserving of your affection. His transition has nothing to do with you nor with anyone else with whom he was romantically involved. He may now be on a path to honoring his true self, but this does not excuse the abuse he inflicted upon you.

  That said, I’m so glad you have found someone who is supportive and encouraging and kind, but it is understandable that you question the solidity of your relationship considering your history. This, too, will take time and patience, and you may want to consider couples therapy in order to process everything together.

  Additionally, though you are deservedly wary of medical providers at this point, please don’t leave any stone un-turned. Don’t hesitate to call us at Maze if you’d like to discuss anything further. Depending upon where you live, you might consider coming in for an initial visit, or perhaps we’ll be able to refer you to clinicians in your area who are compassionate, caring, and understanding of your previous experiences.

  I’m sending my very best regards to you, GreenPanda and please continue to check in and let us know how you are doing.