I've been following this thread with interest, scared to post in case I out myself but also keen to help because I know the loneliness all too well and how much it means to know that other people are affected by this too.
I've had vaginismus since I was 16 - or at least, that was the first time I attempted to have sex and like others, had been brought up in a way to believe that sex was bad which I do think really fucked up my mindset for a long time. That first time, I was a willing participant, despite being terrified, right up until the crunch point and then it didn’t happen and forcing it was so painful it just became a vicious circle of terror, pain and shame. And then the bastard punched me in the face for being a cocktease, which definitely added to my already extreme reaction to sex in later years.
I met my now-husband at 20 years old. He was also a virgin and of course, I still had the same reaction which did cause some disappointment and difficulties at first but he was, and still is, amazing. His lack of forcing the issue (both emotionally and physically) meant that I was able to put complete trust in him and we were able to create intimacy without piv sex. Despite his reassurance however, I still felt like a freak and spend most of my twenties withdrawn from my friends, feeling I was set apart from them and that they had something I never would. This was when Sex and the City was at its peak and the popularity of that programme made me so sad and angry on a regular basis because it was all about taking a casual approach to sex, taking control of your sexuality as a woman and using intimate conversations as a way to creating amazingly strong female friendships. All this seemed so far out of my reach. I was in a very dark place for a while. I also couldn’t cope with the thought of any intimate examinations or smear tests - mostly to do with the penetration issue but also because, by this point, I had convinced myself that I was actually deformed and didn’t even have a vagina. It honestly felt like a brick wall down there and I couldn't bear the incredulity that I had got to this age without realising I was different from all the other girls, or possibility not even a proper female at all. Every time a smear notification arrived in the post it was like a slap in the face, telling me I was a freak and I used to burn them in the sink when no-one was around. I had tried, once, not long after DH and I got together, to discuss this with a GP but she was completely dismissive, telling me I was clearly not with the right person and I should just have a glass of wine to relax and get it over and done with. When DH and I bought our first flat and moved to a different part of the city, I therefore decided not to register with the GP practice - going off grid, would mean I would not receive smear alerts and would not have to attempt to explain myself again. That lasted a couple of years but obviously things happen, bugs and viruses came and I needed prescriptions and sick notes so I had to go back on grid, which only resulted in lectures about looking after my health and when they noticed I hadn't had a smear, sent me along to the Practice Nurse to do it then and there which put me into a complete panic. Again I tried to explain the situation - I even had it all written down on that occasion but I was told I was just being silly.
DH and I got married when I was 27. I had this expectation that, despite the fact we had already been living together for four years, the act of marriage would somehow unlock something in my mind which would allow me to have sex. Consequently, I spent my wedding day getting more and more agitated about the wedding night, despite DH's assurances that we didn’t have to try anything. I got myself so drunk, in an attempt to calm the nerves, I could barely stand up and ended up passed out at the end of my own wedding. It didn’t help that my DM had a constant catsbum mouth on the lead up to the wedding, and kept making references to what we would be getting up to in the hotel that night and how it was disgusting and shameful. By my late twenties, DH and I were in a situation where we still had intimacy but it was less and less frequent, due to the limited things we could do, being stuck in a rut and me blaming myself. The reduced frequency also meant it was more difficult for me to "turn it on" when we did attempt anything so again it was a vicious circle and we started to fall into the flatmate category.
I made a pact with myself - without even telling DH - that I was going to get this sorted when I turned 30. So, six weeks after my birthday - having torn myself up inside over the thought, I made another GP appointment and was determined to make them listen. DH ended up finding out though when I broke down in tears that morning. This time, however, I finally lucked out with a very sympathetic GP who listened to my story and read my notes when I couldn't bring myself to say the words. She took me off the smear list and prescribed me amotryptaline to deal with the pain and recommended an online stockist for dilators. She also referred me to a sexual health clinic which offered expertise in psycho-sexual gynaecology and trauma and throughout the six month wait for me to get an appointment there, stayed in contact though regular phone appointments to check how I was getting on. I should mention that while the drugs worked in terms of lessening pain; I really didn’t get on with the amotryptaline at all - felt like I was walking around in a fog and was always two beats behind the rest of the world which affected my work so eventually I had to give up the medication.
Eventually getting into the specialist clinic was the day my life restarted again. I was assigned to the most amazing doctor who was both therapist and gynaecologist. She was wonderful and it actually because easy to open up to her about my life and past experiences. From the beginning she said it would take a while to overcome and she made me a promise not to touch or examine me for at least a year and not until I felt I was ready. In return I had to promise I would stop trying to have sex and instead look at other ways of intimacy and being comfortable with DH. I started off meeting her fortnightly and also had sessions with DH. We discussed things I thought I could never say and she gave us lots of tips on different things to do, positions to try etc without actually attempting penetration. One of the most useful things, although difficult at first lying in a close embrace with his penis inside my labia so therefore running along the length of my vulva rather than angled up to go inside iyswim. Even now, we use this as a way to relax and get my body used to what is happening when initiating sex. She also gave me a better set of dilators than the ones I had ordered previously and I practiced with these every day. It took ages to move between sizes and about 18 months before I could use the largest one but it did happen. I also found it was useful to try to hold it inside for as long as possible untiI relaxed and was barely aware it was there. After a while I got DH involved also. Having him put the dilator in me was difficult but was a way of practising giving up a bit of control and it work although even when using the largest size on myself, I could only allow him to use the smallest on me. Along with my parent's attitudes contributing to my fear of sex, my hugely heavy and painful periods, therefore lack of control over that part of my anatomy, were also a factor as was the fear of getting pregnant as I was terrified by the notion of childbirth. Going on the pill took those last two fears away overnight. I had just been too scared to ask my GP about it before as I assume it would involve having some kind of examination or difficult conversation.
Almost two years after starting these sessions - which had reduced to monthly after a while - DH and I were having a "intimate moment" when, I was obviously so relaxed and comfortable with the situation for the first time in my life that he just suddenly "popped in" unexpectedly and by accident. It was a strange moment. It did hurt but in a different way to the forced pressure I had always felt before and the pain was overtaken by complete euphoria that this was happening to me. To us! Almost as quickly however, my body realised what had happened and started to shut down so the pain came back. But it had worked and no-one could take that away from us. My doctor was delighted with this news and so we began working on ways to build on that progress - again through positions, techniques, breathing exercises etc. Within about 8 weeks, we were able to have proper piv sex for the first time in our lives and not only that but enjoy it too. Like others have said, I soon became aware that this is a work in progress and is not a situation which will ever be cured. Our doctor warned we might go two steps forward and one back for quite a while and yes, that did happen. There were occasions where my brick wall was back but knowing that we could get back there again made it easier not to dwell on the failures and just shrug them off, ready to try again another day. I still used the dilators and still had regular appointments at the clinic to discuss progress and also at that point we decided it would be time to tackle my fear of smears and examinations. This took another couple of years before I was able to allow a smear to take place and although I'm proud of myself for managing it, it was still very difficult. I have my next one due in June and am already sick with nerves. My wonderful doctor has also retired and although she ensured I was still in the clinic system so that they can give me all the time and assistance needed, the thought of having to go through it all again with a complete stranger, having worked so hard and for so long, is terrifying and I've noticed the vaginismus is already started to creep in again with DH - the two things will always be linked for me.
I'm 37 now and am happy to say my vaginismus has been managed for the last 6 years. Like others, I have to stay in control of sex. It is always me that initiates it and I can't imagine ever being able to give that up but with that one caveat, we are able to do it regularly and I enjoy it. I really, really do! I've also reconnected with friends and feel like life has completely turned around. I even put my career trajectory down to overcoming/managing my vaginismus - obviously not directly but that feeling of being a freak used to make me hide in the shadows so much and now I feel I'm able to compete equally with everyone else. I know that was always the case but it took this to let me see that I am , and have always been, normal. We don’t have DC and we both go back and forward on whether we want to. The desire isn’t that strong but I don’t know if that's because we always assumed it wouldn’t or couldn’t happen for us. I know that time is running out though so it's something to think about very soon. Right now however, I still don’t think I could cope with pregnancy and birth.