Has anyone had vaginismus / painful sex?

[ncGynaeissues]

I have a diagnosis of primary vaginismus - I find penetration really painful (can feel like stabbing pain, and like it won’t fit) but the condition is poorly researched generally. GP was not able to help :(

I’m paying a lot to see a specialist Gynaecologist who has experience treating it and although I’ve made some progress with dilators, I’m genuinely feeling so depressed and devastated that I feel so far from my goal of pain free penetration. I’m willing to throw all the money and time I can but it’s so hard that I have nothing to show for it yet

Has anyone had this condition or similar? I’m genuinely so desperate at trying anything now even if it’s less researched

I feel so broken, I’m late twenties and have been so patient treating it with dilators few years now. I can insert medium sized dilators (smaller than penis) without pain but I’m still so far from my goal of pain free sex. The pain just won’t go away I don’t understand

Could I be misdiagnosed? I’ve heard endometriosis can cause painful penetration but I don’t think I have the other symptoms

I was ‘stretched’ under GA.

Problem then went away forever,

Yes I have this and it's killing my marriage. I have tried dilators but its just too painful.
I also need advice.

I have it also. Penetrative sex makes me feel like im going to tear in 2. Sorry no answers. Just solidarity

Thank you, that’s amazing to hear. Are you based in the U.K.? did you see someone privately for this? If you wouldn’t mind sharing name of procedure or Dr’s details

I have previously had a hymenotomy but it didn’t fix the vaginismus

Yeah it was 40 years ago though! Done at the Manchester Royal Infrmary.

l was only 21, my gp just referred me to a gynaecologist. I can’t even remember the appointment. But the gynaecologist suggested it and l was fine. They gave me dialators but l never used them.

They just said l had very strong muscles

@Glencocoyougo @Tinybirdie I’m so sorry to hear, 💐have you sought medical advice?

It really doesn’t help how poorly researched it is. The Dr I’ve seen has had success treating 90% of his patients, which is also a bit scary considering I still have significant pain.

Purely anecdotal data but I’ve been speaking to women who have been cured (Reddit, tiktok, fb group) - one thing that stands out to me is for many women who have it, they also find treatment very successful (dilators, physio, botox). Most of them are free of it within a year and it doesn’t return.

I wonder if more stubborn cases are misdiagnosed, we could have additional conditions causing the pain. Overtime dilators have improved but not cured my condition (was so tight before, q tips hurt) but personally I still have a very sharp stabbing pain in certain areas/angles. I’m going to see another Dr to query whether it could be provoked vestibulodynia - another poorly researched condition but there are some different treatments offered than standard vaginismus.

Sorry it was an obstetrician. At St Mary’s women’s hospital.

He’s dead now though.

I have the same issue since my 20s and I know how awful it can be.

I tried a series of dilators which helped a little.

I have only been able to have penetrative sex without pain a couple of times!

It wrecked my love and sex life obviously and I just gave up in the end trying to make my body something it just did not want/could not do.

Sorry not to be able to add any positive story...

I think there is little awareness of this and as usual 'women's problems' are not a priority for doctors and researchers.

It seems like for some women it can also be linked to trauma and negative views of sex so counselling might also be helpful to some.

I'm unsure if I have it. I can fit all standard dilators in although the biggest is tight. However, I cannot get my partner in. He is, ahem, large. When we first dated, it was ok but over the last few years it has just got more and more painful to the point now where we can't get more than the tip in.

It has ruined our sex life. I'm hoping to find larger dilators. Honestly the largest dilator in my pack (I think it's something like 3.5cm diameter?) is no where near as wide as my partner.

My partner says he's never had a problem before and tbh I believe him because I was ok at first. It's just over time I seem to have gotten tighter!

Dilators are awful. I never got on with them. i had really really bad vaginismus, the only thing I ever found that helped was this:

https://vagi-wave.com

It’s tiny compared to the dilators but it doesn’t stretch so allows your body to relax. I found even when using a dilator the muscles were still tense, so it was still agony and often impossible to use (even with the smallest dilator size).

I’ve had vaginismus all my life and I’m in my 40s, it’s still bad and I still find any form of penetration painful, but can manage it. I’ve had 2 kids (c-section births, but natural conception), I’m able to have smear tests (medium speculum) and use tampons now. Honestly, considering how bad my vaginismus was this is amazing, and in my 20s I never ever thought I would get to this point.

Thanks @Bodun apologies I’m naturally skeptic, but did you namechange / are you a new user? It’s just that I couldn’t find any other posts from your user and this company posted in the vaginismus subReddit where many commenters had said it didn’t work, and customer service was bad/‘woo’ explanations

I’m sceptical how this could work as it looks so small, like what could the science behind it be. Wouldn’t keeping a similar sized dilator overnight do the same thing hmm

the website doesn’t seem that professional either

I had it but slightly differently - it wasn't painful, I just couldn't get anything in. Had never managed a tampon, and just looked at the dilators thinking "well, how am I supposed to even start"

Then I saw the amazing Dr Holti (who said "goodness, how old-fashioned" - in 1995...) and she taught me a little trick which works on the principle that you can't accidentally pull a door closed if you are simultaneously deliberately pushing it open.

Thirty years later I still have to do the trick on entry but things are fine after that.

In those days they were pretty convinced it was to do with developmental trauma, which as I was pretty certain I didn't have any was a bit confusing but hey, maybe I'd been affected by my mum getting a touch of PND when I was 5...

Recently I've seen suggestions that it may be linked to hypermobility, which makes more sense to me.

Could you explain in more detail?

Hi. I had the same problem in my early twenties, which led to the break down of my first proper relationship. I saw a Clinical Psychologist. I used dilators for 2 years. After that I was ok with intercourse. However, alongside this I had interstitial cystitis (bladder pain) so it was complicated by that. And i was given a low dose of amytripteline to help with my bladder (which i think is sometimes used for some gynaecology complaints). One thing I wonder if you have tried as it helped me. My whole pelvic area was so tight with tension. I had lower back massage once to twice a week and I think it really helped loosen up that area. It was an aromatherapy person, so not rough massage and over the course of a year. It was expensive but I noticed that the dialators felt easier to use after a session. I hope you manage to overcome this. I remember feeling so low over it. I'm twenty years on from it now and even though I did manage to have one child, I requested a c section. Fingers crossed for you.

I have very painful sex where I tear a little, like tiny fissures in the skin. It’s so painful! Years ago I saw a gynaecologist who also had a lot of knowledge of dermatology and she thought I had excema. I tried the various emollients but nothing helped. I feel very tight and it takes ages to fit my husband in. We haven’t had sex for two years now. Luckily he’s v patient but I need to start the process of finding another good gynaecologist as I last attempted to sort it 15 years ago and perhaps available treatment has changed.

Would a pelvic floor physiotherapist be able to help do you think?

Yes me. I suffered from this in my early adulthood and did not lose my virginity until I was 26 because of it. I overcame it thanks to a very patient boyfriend and seeing a sex therapist and practicing with various dilators.

I am 44 now and I still have issues with tightness and painful sex, esp if I haven't done it for a week or so. I can't have penetrative sex for very long before it gets sore. My husband is OK with it but I do wish I could be "normal".

I am hoping so. 🙏 Just seeing a Gynaecologist privately who actually specialises in this condition has already been pretty expensive so I initially had only read free pelvic floor relaxation tips online.

Funnily enough I just booked my first pelvic physio appointment last week though. They claim to have experience with vaginismus (I found not many physios had direct experience with vaginismus/vulvodynia, even if they otherwise treated pelvic pain).

Hi garlictwist, I’m sorry to hear that. Just wondering if you have ever seen a gynaecologist for it?

Botox for vaginismus can yield very good results even for the most stubborn cases (despite the conditon being poorly researched overall, there is still medical evidence to support Botox effectiveness at reducing vaginismus spasms).

If you only have vaginismus and no other conditions contributing to the pain, there’s a good chance Botox could work well.

It improved things for me temporarily, didn’t cure however I have a strong feeling I may have vestibulodynia too (only diagnosed with vaginismus currently).

I personally have the sharpest stabbing pain concentrated in the 6 o clock area, whereas other points feel more like pressure/discomfort that I can eventually work through with relaxation and stretching.

Also with dilating I feel like gynaecologist’s can be a bit vague with instructions. I’m hoping a pelvic physio can give more strategic advice for moving up to the next larger size, especially when you feel like you’re stuck on one size

It just doesn’t seem productive to keep forcing insertion if there is extremely sharp/stabbing pain, surely that could risk traumatising the muscles more?

whereas my Dr will simply say “deep breaths and be brave, you can do this”

Hi all, just an update my symptoms have improved (for now) since seeing a pelvic physiotherapist. I still use dilators regularly but I now feel I have an actual strategy of using them for better results. My Gynaecologist was really not helpful when it came to dilating advice!

I have also had manual therapy by the physio which probably helped too.

I am now able to fully insert a 5.5 inch length x 3.9 inch circumference dilator without pain in a minute or so (my vaginismus case is severe so that’s quite a milestone for me). I even could move it around, back and fourth and it was still comfortable

using a vibrator on the entrance on a low setting can help massage the area before dilating, and then once dilator is inserted I like to press the vibrator on dilator handle. It increases blood flow to the area and reduces tension

Deep breathing and learning to engage with your pelvic floor can help release the tension.

I’ve progressed further in past month than all the years before. From my experience you should never push through stabbing, burning or sharp pain!!! Discomfort is fine to work through but it shouldn’t be anything over 4/10 pain wise (you’re not ready for that size if it’s more painful). It will only cause things to worsen as your pelvic floor will tighten more with anticipation of the pain. When you’re newly introducing a larger size it’s okay to take plenty of time, insert only part of the dilator and keep it still. Build up from there until you can fully insert dilator and move it around, then that’s a sign you’re ready to move up a size.

Previously out of desperation I’d force through pain and take ketamine to distract myself - it didn’t work and probably caused more harm

Just to add, on a particularly low day I caved and bought this vagiwave thing a pp mentioned (out of desperation).

I can only share my own experience, and it felt like a waste of money. I still carried on using it every night but it’s so small it didn’t feel like it helped at all. I can only imagine it’d be effective for people with the most severe forms of vaginismus who struggle attempting to insert anything

I’m also not sure what the difference between this vagiwave and keeping a small similar sized dilator overnight would be. Normal dilators are cheaper too!

No I’ve been on mumsnet for decades. I’ve got a couple of other usernames I use more often and then for stuff like this I prefer a ‘burner’ (think I’ve used it by accident a few times more recently though.

I won’t take a picture of the actual thing for obvious reasons, but here is a picture of the bag (closest I could find to today’s newspaper 😂) I’m just a normal, genuine customer.

My vaginismus was one of the worst my gynaecologist had ever seen. At my worst, I could never ever have contemplated even the smallest dilator. A q-tip would have been agony. So I needed something tiny.
Also, I couldn’t cope with the rigidness of the dilators, they felt like they were just hitting a brick wall. This was soft and flexible. So much more comfortable I physically couldn’t keep the dilator in for more than a few seconds, overnight would never have been possible - my pelvic muscles would contract and just push the whole thing straight back out.

Not everything will work for everyone. I bought it probably getting on for 15 years ago and it honestly changed my life. Dilators were by far the biggest waste ever for me, I doubt I’d even be able to use one today. It was the starting point that led to a change in my psychology.

I had vaginismus as a young woman. In my case exercise was the thing that led to change - the gym for a period of months, then swimming and cycling as and when. I understood that it isn't actually that the muscles are too strong but that they are not strong at all, and not responsive. I'm sure the exercise built tone and strength. The night I had a breakthrough with the large dilator was the night I had been for a very long swim and then cycled home.

Best wishes to you all. I remember how dreadfully isolating it felt.