Vaginismus is pretty tricky to diagnose. Not because it isn't a defined and recognised condition, but because of a lack of awareness and training among clinicians. The condition presents with symptoms that are similar to a lot of other conditions, and so misdiagnosis is also a big problem.
It took me 11 years to get to my Vaginismus diagnosis. It is unfortunately very common to hear women talk about their journey in terms of years. I saw dozens of clinicians in various specialities, underwent numerous treatments and even some unnecessary surgery, without ever hitting upon the V word. This experience (pre-diagnosis), led to some pretty negative feelings towards my condition, myself as a person and my relationships.
After I finally got my diagnosis it was like a golden ticket. I got seen by people who knew what they were talking about and I got a treatment plan. I felt acknowledged and vindicated. I hadn't been making it up. After literally years of feeling despondent, recovery suddenly felt like a real possibility.
I'm going to take you through my experience of getting a diagnosis and some of the treatments I had along the way, all the way through up to today. Buckle up!
Creams
In the early days of having symptoms I was pretty confident that the issue, whatever it was, could be identified and sorted out quickly. I was 17 years old and blissfully naïve. I had previously enjoyed pain-free sex with my partner and I hadn't yet had any life experience of having a medical condition that couldn't be diagnosed or treated with a short course of medicine. I had absolutely no awareness of psychological conditions, nor the concept that they could have physical manifestations. Although I had actually experienced mental health issues in the past, I held a lot of shame about it and it was never something that I sought help with.
I did seek help with my new vagina issue pretty quickly. Mostly because it was coupled with severe and recurrent UTIs (sound familiar?). I had some pretty unsavoury experiences with male GPs, even in relation to the severity of UTIs, notably being told that I could probably cope without antibiotics. This was a pretty severe infection, so no, I couldn't.
This initial period of my condition was characterised by dermatological investigations and dozens of prescriptions of medical creams to treat everything from Thrush to Lichen Sclerosis. None of which I actually had. Which should have been glaringly obvious to the GPs but for some reason was not.
Around 3 months since I first experienced symptoms, I remember declaring to my Mum that it couldn't possibly last much longer, as we trudged to yet another pharmacy to order yet another cream. Surely this time it would be the magical cure that would get rid of it. Whatever 'it' was.
At the time of writing I'm around 156 months into this condition, so, yeah. No.
I was also subject to numerous swabs, pokes, and other such tests to determine if I was suffering from an STI/STD. This was pretty standard every single time I sought help. And every time it was negative. This didn't help much with feeling stigmatised.
Nerve Endings & Pain Management
Once I had tried every cream in the kingdom, some new specialists thought it could be something to do with nerve endings in the area. I was offered anaesthetic creams such as those including lidocaine, to use during sex, to reduce the pain. It didn't do much.
I was also trialled on a low dosage of Amitriptyline which is typically used as an antidepressant but also commonly used in low doses for pain management. I believe this is a legit treatment for cases of Vulvodynia and reading through my notes from the time I did seem to notice a small amount of improvement when taking this (I sincerely hope that doesn't mean I also have Vulvodynia..) but for whatever reason I didn't end up taking it long term. Perhaps bad side effects or maybe the improvement was just short lived.
Around this time I was getting pretty desperate. My relationship with my partner was deteriorating FAST and I was avoiding any kind of sexual interaction. Anything I did engage in was done out of a feeling of obligation, not desire. I took to consuming alcohol and taking strong painkillers before each attempt. This was a serious low point. It felt like I was knocking myself out and dulling the senses in order to have sex that was still pretty horrible. I'm really very angry at myself and my boyfriend at the time for doing this. It's deeply unhealthy and I strongly advise against it. It's an attempt to mask the problem rather than finding a solution. And it had the potential to cause other problems. My already negative associations with sex can only have been exacerbated by these experiences, and I think it had a profound impact on my ability to trust people.
Throughout this whole period I was also advised to make some small lifestyle changes to manage my symptoms - which again in hindsight sound a lot like the advice given to people with Vulvodynia. Namely: avoid wearing tights, tight trousers, avoid soaps, detergents etc. These had no effect on my symptoms, although I do separately have sensitivity to some detergents which is unrelated to my Vaginismus symptoms but also nice to be rid of!
As the months ticked over into years and the numbers of doctors poking their chubby male fingers into my vagina entered double digits, I clung on to the fact that the diagnosis was really the problem here. As soon as someone could tell me what it was, it would be fixed quickly.
Surgical Intervention. Yikes.
I forget the order of some of these events since it was so long ago (must request my medical records sometime!) but I know that I underwent a minor surgical procedure to further investigate bladder symptoms and also to remove a piece of skin from around the entrance to the vagina to see if it made any difference to my symptoms. Alas, it did not. It was however pretty fucking painful and my first experience of anaesthesia which is unpleasant. I regretfully had the procedure done in the hospital that my mum worked at so the whole time I was worried that they all knew who I was. I think it was also a mistake to have the to procedures done at the same time. The pain when I woke up was pretty incredible and yet again I wonder whether this just further compounded everything. I was also not even allowed a day off from college despite feeling incredibly raw and having to wander round campus gingerly. Harsh.
Another failure. I was told that the investigations were inconclusive. Perhaps there really was nothing to diagnose after all?
The Physical Therapy Period
Once a week I visited my physiotherapist at the hospital and had a vagina massage.
Poor Amy (not her real name) had to massage my vaginal muscles by hand or with the head of an ultrasound machine, while we talked about what was going on in our lives. I remember our sessions as actually quite a positive experience.
Firstly, she was young and also female and therefore had a vagina of her own so I felt she could maybe relate. She was also incredibly sympathetic, she took me seriously and I felt acknowledged. She spent heaps more time in the room with me than the highly paid consultants who averaged about ten minutes across a desk. I could just talk to her more easily, despite me being naked from the waist down and with her fingers in my vagina.
Amy told me to order a set of Amielle Comfort dilators and use them for homework. I remember viewing the dilators with a lot of fear, anxiety and trepidation. I don't think I ever really understood what I was trying to achieve by using them, and I definitely didn't have any faith in it as a treatment, so I was just going through the motions.
At this point my medical insurer cottoned on to the fact that this was fast turning into a chronic condition and they stopped funding my investigations and treatment, so I never went back. I was relieved. I could shove the evil dilators into a box at the back of a cupboard and call it a day.
And so that was the end of that, for YEARS. I reasoned that I had tried literally everything and all of it had failed.
Avoidance
Once the latest round of treatment stopped, I settled into the mindset that I was just someone who could never have sex. I avoided it at all costs. This was easy to do most of the time since I was in a long term relationship and we were only together at the weekends. I also had absolutely no desire whatsoever to engage in any sexual activity, such was my shame and fear. Looking back it wasn't helpful to be so avoidant. It just led to more damage in my relationship and therefore my self esteem. NO ONE had thought to talk to me about how to enjoy a sexual relationship without penetration. Can you believe it? All of the "workarounds" me and my partner tried always ended up in a penetration attempt. It was never just off the table.
Unsurprisingly, my relationship broke down eventually and we went our separate ways. I was terrified that I would never have a partner again because no one would want a woman who couldn't have sex. My ex actually told me when he broke up with me that I needn't worry. I would find someone that hated sex as much as I did and live a happy celibate life together. I know that's what some people want from a relationship but it isn't what I want so that was a particularly unkind comment, even if it was meant well. I wanted to be able to have sex again, to enjoy it again, I just needed some help to figure that out. But this just demonstrates how little we both understood about it and each other. Good riddance.
I briefly entertained the idea that maybe I COULD have sex with someone else. Maybe HE was the problem. Obviously that was a fanciful thought and I came to my senses quickly.
It was another 2 years since that break up (and 9 years since the end of my previous treatment) until I sought out some help again. It shocks me to think about that length of time. I really just had no idea I'd waited that long, I just got so used to avoiding the situation.
I would every now and then be inspired to Google my symptoms and attempt a self diagnosis. I'd briefly think about going back to the GP, then realise that it was all futile, that I would die alone. I'd have a mild panic, sink into depression and abandon all hope. Until a few months passed and then I would google it again. REPEAT.
2018 - the year of CHANGE
Snap forward to winter 2018. I was prompted to seek out treatment again. I was approaching 30 and I was living with girls who were all single and engaging in casual sex and I felt left out. I was also a bit scared that I hadn't ever had a smear test.
I'd got really obsessed with Googling my symptoms and had come across a couple of magazine articles about Vulvodynia and using an experimental new Botox treatment which seemed like a magic cure. HALLELUJAH!
I plucked up the courage to go back to the GP. I can't overstate how hard this was. I think I had a G&T before I went to the appointment (not recommended) and I was still unbelievably anxious - shaking, sweating, palpitations. I was seen by a lovely young female doctor who was sympathetic and desperately wanted to help but didn't have any experience of the matter (again) but she had a colleague in the same surgery who did (oh??). I waited anxiously alone in the consulting room while she went to find this mysterious woman who was knowledgeable about painful vaginas, knowing I would have to explain it all over again for the second time that day. The first doctor eventually returned alone but it was arranged that the second doctor would call me back on my mobile.
She called twice and left two voicemails. I rang back and was over the fucking moon when she didn't pick up because it meant that I had legitimately tried but could now go back to happily avoiding all of this FOREVER guilt-free. It was just too overwhelming.
The dreaded smear test
I did book my smear test though. HOW? Well, it's important to note that penetration is possible for me (albeit incredibly painful) whereas this is not the case for all of us. So I thought I could get through it. A family friend had just recovered from cervical cancer and I was a little worried that I'd never had a test.
The GP had told me to book an appointment with Nurse Sarah (not her real name). Sarah, it turns out, was an amazing nurse who was experienced at doing smear tests on women with conditions like mine (I didn't know such nurses existed??). I was intensely sceptical but she was great. She believed me straight away and acknowledged that this would be painful for me. She accepted what I told her and went out of her way to make me feel as comfortable as possible. She used a cotton bud to sort of 'test' how severe it was for me (that's right, she didn't just shove her fingers or the speculum in) and she then left the room to hunt down an extra small speculum (yes, there are different sizes!).
We took it slow, she talked to me about my condition and she just about managed to get the smear test done. It was very painful, but I got through it. I was also really proud of being able to talk to her about it and not collapse into a sobbing mess. This was a big day for me.
I'm not sure whether I'd recommend getting a smear test done if you have Vaginismus. It might do more harm than good, on the other hand it is pretty important. I think discuss it with whoever is treating you before deciding. I wasn't being treated by anyone so I just went for it.
Anyway, during the procedure this absolute gem of a nurse casually mentioned that I should contact a local NHS clinic in the borough that could offer me some help for my condition. Just like that. What. WHAT WHAT WHAT? How had this literally NEVER come up before that there was a local clinic for people like me? With specialists?
The long-awaited diagnosis!
It took another three months to be able to get an appointment at this magical clinic, by which time I nearly bottled it again. I was inches away from backing out, but I somehow made it to the appointment. Again, I was absolutely consumed by anxiety and shame.
The appointment was with a medical doctor AND a psychologist in the same room at the same time. Both specialising in sexual health and sexual dysfunction. Revolutionary. I was so nervous, I felt sick and it honestly wasn't the most comforting environment. It was just in a medical consultation room where I sat on a chair directly opposite TWO clinicians. I don't know what would have made it better, possibly a brick wall between us. Or a bag I could shove over my head. Or sedation.
The appointment was uncomfortable but necessary. I had to recount everything right from the start and this was like the 10 millionth time I'd done this. But this time I felt I was being taken seriously. It was pretty triggering and I cried for most of the session but somehow I got my point across and they gave me a clear and concise diagnosis of Vaginismus and dismissed my concerns about Vulvodynia. Just like that!
Accepting that I had a psychosexual condition
In the culture I live in, mental health has never had the same focus and respect as medicine (are there honestly any cultures where it has?). Mental health is still hugely stigmatised but it is slowly getting better. On a personal level I did not understand that there could have been a psychological basis for something that was causing my pain. So in the early days when someone would suggest that I got therapy in case it was a psychological problem, I took that to mean that they thought I was making it all up. And maybe they did, they never exactly explained. I also saw therapy as something to help COPE with the symptoms, not as a tool to change my mindset and resolve the condition. Today I'm thankfully much more enlightened and champion mental health awareness and hold therapists in high esteem.
When I did finally get my Vaginismus diagnosis, I already knew what Vaginismus was from having done a lot of Googling. I didn't think I had it but the doctors filled in the blanks for me and were really good at explaining the mechanics. They reassured me that they successfully treated a lot of women in my position.
The real difference for me between the clinic where I finally got my diagnosis, versus all of the other gynaecological specialists was that I had a medical doctor and a psychologist working together in the same room examining my physical symptoms and my psychological wellbeing. It linked the two things together for me. I felt like I was being taken seriously, that I was respected and that this was something real that they could help me with. Typically my experience of medicine is that each specialism (gynaecology, urology, etc.) operate independently and it is up to the patient themselves to navigate their journey. Having both specialists in the same room removed that for me.
I can't describe how strongly I feel that psychologists have as much a place in modern healthcare practices as medical doctors, and I hope this is slowly changing for the better. Hopefully one day every GP surgery will have a resident psychologist or two.
CBT and Dilators
After my diagnosis I got put on another very long waiting list to start sessions with a therapist. Another opportunity to back out but I managed to stick to the plan! To my dismay the new therapist was NOT the therapist from my original diagnosis session. SIGH. So I had to explain everything again. But it was worth it because it kickstarted my latest round of treatment.
Although I'm grateful that I eventually got the help that I needed, it was several months from the first GP appointment to my first proper therapy session. This gave me far too much opportunity to back out and its a miracle I followed through. Unfortunately the reality is that there just aren't enough resources for the people who need them.
On the NHS in my local area I was entitled to around six therapy sessions, which didn't seem like a lot but we actually got through an impressive amount.
I imagine the content and structure of the sessions vary greatly depending on the patient but for me the sessions revolved around:
Understanding Vaginismus and its possible causes
Understanding the fear/pain cycle
Building self confidence / self esteem
Getting to know myself and getting comfortable with my sexuality
Working on shame associated with the condition and sex in general
Working towards some goals (like tampons)
Working through talking about my condition to people and dating
Instruction on how to do dilator therapy at home and a catch up each week
I felt like a dried out raisin after my first therapy session. I spent much of the session crying and not able to communicate well but I eventually covered the history of my condition (hurrah!).
The sessions progressed from there and after the first session I found I had mostly got over the crying. I still found it difficult at times to talk candidly because I'm an intensely private person and not a big talker, so there were a lot of uncomfortable silences, but I have taken so much away from the sessions.
I understand the processes behind the condition, I recognise some potential causes for why it happened, and I understand my emotions about the condition. I feel so much more confident with my body and my self. I like myself a whole lot more and I can enjoy sex again (non-PIV). I know how to tell someone about my condition and while its not a comfortable conversation its constructive. Mostly. I've even had a relationship since then (holy shit!) which involved non-PIV sex and I had a lot of fun.
So its been huge for me. For anyone who is nervous or apprehensive about engaging in psychotherapy, those are really normal feelings. But just know that there is so much to be gained and for me dilator training without the psychotherapy element just wasn't working.
I mentioned a little earlier that I had tried the whole dilator thing several years ago without a single bit of success. Having the therapy sessions alongside using the dilators meant that I could ask questions and she could guide me, for example if she thought I was going to fast, or not being kind to myself. Even with practical things, she was able to help me find some dilators that I didn't viscerally hate, gave me tips like using lube when I tried to use tampons, coached me on the importance of Kegels and helped me prep how I was going to tell a new partner about my condition.
I find myself often perplexed and frustrated with the dilating and I often take breaks. My success varies day to day and over time. Some days I have good sessions, sometimes I have bad sessions. Working with dilators can be really demoralising because it takes such a long time, and having a therapist to help you stay on track is invaluable.
Botox
A few months after I had run out of therapy sessions, I was still stuck on my dilators and in a new relationship. I didn't have so much free time between work and dating so unsurprisingly my dilating routine started to slip. My partner knew about my Vaginismus and we were enjoying non-PIV sex but I wanted to progress faster. We made a couple of stupid and obviously unsuccessful attempts and that sent me spiralling. I kept thinking that I was stuck with the dilators and that they weren't working. I'd read about an experimental treatment using Botox to assist with dilator therapy and after careful consideration I thought I'd give it a shot.
It was expensive and I was a little nervous at how experimental it was. I read everything I could find online but there was 1 actual study, performed in America which seemed to have a good success rate but nothing in the UK. There was only one clinic I could find in the UK that would do it and they couldn't give me any stats about success rates when I asked. I felt like my concerns about success were just brushed under the carpet. All I had were some website testimonials. The procedure was also a little different to that of the American study. But I was desperate and I didn't have a choice since there was only one clinic, and flying to America to get some Botox inserted into my vagina seemed extreme.
So I went ahead with the procedure. It went pretty well, and I did get some short term benefits.
The procedure is quite simple. Botox in injected into the vaginal muscles. It works to relieve Vaginismus symptoms because Botox has a paralysing effect on the muscles. It is a short term effect and lasts around 6-9 months before your body gets rid of it. The idea is that it gives you a head start with the dilators because it reduces some of the muscle tensing and therefore pain. The idea is that you can jump up to the top of the set, spend some time working on that, and progress to PIV sex quickly. Easy peasy. My treatment was successful in getting to the top of the set but not PIV sex.
I opted to have local anaesthetic rather than sedation because I was worried about being outside of a hospital environment, I don't think I really understood the difference between sedation and full anaesthesia. There was pain from the local injections but it wasn't for long and I was able to breathe through it. The procedure went well, the nurses were so lovely and the gynaecologist was a nice guy too although a little old fashioned. They talked to me throughout to make sure I was ok, they did all the right things (as far as I know) and I felt as safe as I could, with my legs spread wide and having needles inserted into my anxious vagina.
One worrying (and in hindsight amusing?) moment came when all of a sudden there was a bit of commotion as the syringe sort of burst (?) or came out? or something? and there was a splatter of er well I guess blood? and other fluids? on the wall nearby. I was startled and initially concerned as they dabbed up blood. I was far too English to shout "WHAT THE FUCK WAS THAT" but I did manage to squeak out a question and they reassured me that everything was ok. I couldn't feel anything because of the local anaesthetic and I'm still alive sooo. Seems ok..?
The procedure didn't take very long and they kept me in the waiting room for some time after (maybe 30 minutes?) as there are some rare but serious risks associated with Botox. Everything was fine though and I was sent home.
I had stupidly gone to the appointment completely alone since I wasn't undergoing any type of sedation. I'm pretty independent so I do loads of stuff on my own but it was quite unpleasant and I could've done with a friend to pop me into a taxi afterwards. The problem is none of my friends know I have Vaginismus and it was only early days with my partner.
Imagine the scene. With a somewhat sore vagina and feeling very vulnerable I left the clinic and walked down a central London street, through absolutely biblical rain, into the local Boots store to purchase laxatives, before battling my way down Oxford street and onto the Tube where I had to stand the whole way home. I considered getting an Uber but I was worried about speed bumps and their effect on my vulnerable vagina.
Once I got home and WhatsApp'd my Mum and partner to tell them I was still alive, I hid in my room for the rest of the day. I think I even went to work the next day because I just do NOT ever give myself a break.
It's a really odd sensation having your vaginal muscles Botoxed. It's a bit like when you have an injection at the dentist, you can sort of feel your face but not properly. Everything felt like it was swollen (it wasn't) and felt like I was pushing it out constantly.
For two weeks you have to be quite careful as the Botox can move around a bit and you don't really want it moving away from the intended area and towards somewhere it shouldn't be, like your bum. So that means minimal touching, no rubbing, gentle wiping or dabbing. I had some constipation which is to be expected as the associated muscles are all close together so were a little impacted, but nothing serious (sorry TMI).
I was SO EXCITED for the two weeks to pass so I could go back to the clinic and be cured. I just kept thinking "what if this is it?! and I can have sex in a few weeks?!". I tried not to get my hopes up but I did anyway. It was also really hard to not be able to engage in any sexual activity for two weeks in a new relationship. Yep. That's from the person who avoided it for YEARS. Therapy! It works!
Once the two weeks were up I eagerly returned to the clinic where a nurse checked me over and then ran through a dilator session with me. It was the first time I'd actually had a demo on how to use dilators using my actual body and not just my imagination (why is that??). It went really well, she inserted the first FOUR dilators really easily and the fifth dilator to about 75%. MAGIC. She told me that this was a great result, on the better end of the scale (I actually thought everyone got all of them in, no?) and that she expected my issue would be resolved in two weeks. HALLELUJAH. ARGHHH.
But it wasn't. When I was doing the dilator sessions on my own, I didn't have the same level of success. I have absolutely no idea why. I thought it should be easier if I was in control? I just got a bit stuck. And since I'd pinned all my hopes on this treatment, I felt like a failure again. I didn't really know what to do. There wasn't any further follow up opportunities with the clinic so I just kept trying with the dilators. I did have some successes as my partner was now able to insert a finger, when I was suitably aroused, which we hadn't been able to before. So I think it helped to some extent but it wasn't a magic cure.
I started to get worried about what would happen when the Botox wore off. I felt like I wasn't going to get through the dilator set and so I'd be back to square one, just a lot poorer.
Then I had a big life change and all my Vaginismus treatment fell by the wayside. I felt like it didn't matter since I was failing anyway. The relationship ended, I relocated to a new country and left my dilators behind. It felt really good to put 11,000 miles between my vagina and my dilators.
Where am I today?
OK, so I never got through the dilators and the Botox has now well and truly worn off, and I'm not that much further forward. SIGH. Some of that is obviously my own fault for not finishing the dilator set but I certainly never had any hope of recovering in the two week period the nurse claimed. I'm sure some women do, but not me. It didn't help that I treated every set back as an utter failure and so I gave up all hope, rather than persevering.
I'm back in the UK due to Covid and reunited with my dilators once again. I'm doing it without Botox and without a therapist this time so errr let's see how that goes. I'd like to engage in therapy again at some stage in the near future but I do at least have a better attitude towards failure these days (usually). You can follow my progress in my Dilator Diaries series and I've also shared the ins and outs of my dilating routine.
My journey is absolutely not over yet, I still have a long way to go but if I tracked my progress from 2007 through to today, the overall trend is in a really positive direction. I have a lot to work on in terms of building self confidence which, as my therapist emphasised, is my biggest obstacle. I'm still working on my dilators but I'm also hugely proud of where I am so far.
Phew. Ok. That was a long and emotional post! Well done if you read all the way down to here. I hope it wasn't triggering for you. Give me a shout if you'd like to talk about anything or even just share your own experience.
I wish you luck in your own treatment!
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