Vaginismus

[naamechange]

Inspired by another thread .

I was diagnosed with this years ago following trauma in my teens .

I’ve never had penetrative sex, I can’t use tampons and I need diazepam to have a smear test .

I’ve spoken to GP and gynaecology who said it isn’t very treatable, it’s not treated on the NHS, and I would learn to live with it . It’s linked to having post traumatic stress disorder, which they also said they can’t help with .

I was handed plastic dilators a few years ago with a DVD, but found them so painful I gave up .

I’ve been told the best treatment is to force myself to have sex (‘you’ll learn to enjoy it eventually’) and suggested to use local anaesthetics each time . Have also been told I have to ‘prove it’ when needing a smear eg, they won’t give sedation until they’ve tried to force it first .

I’m turning thirty next year and I’m a bit fed up with it all now; I would like to be able to have a normal sex life and to not feel so controlled by my vagina !

Is there anything I can/should try, or am I best just hoping it fixes itself somehow one day?

Hi that sounds horrible for you. Have you tried a womens physio specialising in pelvic floor issues? I know its not a pelvic floor thing, but those women everything there is to know about vaginas.
Also, they are naturally very gentle supportive and resourceful as many women with prolapse issues come to them pretty distressed.
There might be silicone dilators you could get, the physio might know where to get them. You could also get psychotherapy for the ptsd, is that something you have tried?

No advice sorry, but this must be really distressing for you. Telling you to prove it is absolutely awful! I hope someone can come along with some advice for you 💐

I could have written your post Op. I'm in the same boat and about the same age as you (just turned 30). I also have PCOS and endometriosis. I have had little to no help from the nhs and don't know where to turn.

I want to have a family but don't even feel like I can have a relationship with anyone due to my issues.
Hoping you find some answers and solutions.

My friend (a virgin until age 30) was told in her 20s that she did not require a smear test as she had not had sex. Granted that was years ago.

But I am however surprised that you would be getting them presumably on the nhs in the same circumstances?

Did you tell them you have never had penetrative sex?

I did - I’m in Scotland so got first invite at 22 . GP said back then I could avoid until age 25, then I ended up symptomatic so had to go for one - at 25 anyway funnily enough . Had second one in January .

But have had so many problems down there that I’ve had speculum exams dozens of times unfortunately... which is probably part of the problem really .

Compulsive that’s me too - endometriosis and PCOS . I’m at my wits end with a lot of it and like you, desperate for a family of my own .

I have seen those silicone dilators before, have always been too scared to try them as was so sore the first time . I’ve no idea when you should use them, they said before to pop them in at bedtime for 20 mins or so... but I remember being sore most of the night !

I maybe need to give it another go . Perhaps could take painkillers beforehand . I’ll ask about PF physio too, I remember that being discussed a few years ago .

Hello OP and PP. I had vaginismus for a number of years. It was a lonely time. Will try and keep this brief because I could write reams.

How much do you exercise? I am convinced that was the key to me getting better. I had plastic dilators, hated them and didn't use them really. But I remember they were very easy to use one night after I'd spent an hour or two swimming breasttroke. I used to cycle at the time too and I'm sure strengthening all those core muscles helped. I could use tampons though.

Have you heard of the Vaginismus Support Network? It might have another name now.

You've had shocking advice to just 'force' your way through it. I was told by a GP to just get drunk. Appalling. But it all feels like a long time ago for me now so please take heart that you can overcome this condition.

Have you tried having trauma therapy? You might have to go private. Depending on what caused the trauma, it may be possible to have EMDR which is evidence based and is generally shorter than traditional talking therapies (it's used also for soldiers returning from war, but many other forms of trauma too).

If the vaginismus is connected to a trauma, then it could be a symptom of the trauma, not necessarily a stand alone problem. The body and mind are very connected, often outside out consciousness (think about hearing a scary story and getting goosebumps - and also try to make yourself get goosebumps..).

There's a book called The Body Keeps the Score which is about trauma and the body. It's a long book and I'd only recommend if you're interested in how trauma and the body connect. But understanding that your body is not necessarily working against you here, rather it's trying to protect you (even if that is inconvenient or apparently irrational) might help both in reducing stress around the problem, as well as looking for the right kind of help with it.

I would also second the idea of a woman's physio, but you're going to need to feel very comfortable with her (more so than women with some other types of complaints), so don't settle for someone with that title, but one you actively feel comfortable with.

I remember I had this when I started having sex in my late teens/early twenties. It eventually resolved itself and wasn't a problem anymore, but it felt like it was going on forever when I had it. I think it took about four years until I was fully 'cured' in my case (and I also have PCOS, wonder if there's a correlation?)
So I don't really have any specific advice, just want to say to anyone out there that you are not alone with this problem, because I can remember feeling like the only person in the world who had ever experienced it before, it just doesn't seem talked about or acknowledged at all.

I had this too OP.

My gynecologist gave me a set of dilators which took took me a year to get in. Actually I think the first set was glass (WTF??) and i remember smashing them in frustration.

Eventually they worked. I must have gotten a different unbreakable set. The first one was very small. I used plenty of lube and tried to relax. Also I think I tried different positions - lying on your back might be too confronting.

Sorry I don't have more details. It was about 20 years ago so my memory is sketchy but I remember it being very distressing.

@HotelliFinlandia

Have you tried having trauma therapy? You might have to go private. Depending on what caused the trauma, it may be possible to have EMDR which is evidence based and is generally shorter than traditional talking therapies (it's used also for soldiers returning from war, but many other forms of trauma too).

If the vaginismus is connected to a trauma, then it could be a symptom of the trauma, not necessarily a stand alone problem. The body and mind are very connected, often outside out consciousness (think about hearing a scary story and getting goosebumps - and also try to make yourself get goosebumps..).

There's a book called The Body Keeps the Score which is about trauma and the body. It's a long book and I'd only recommend if you're interested in how trauma and the body connect. But understanding that your body is not necessarily working against you here, rather it's trying to protect you (even if that is inconvenient or apparently irrational) might help both in reducing stress around the problem, as well as looking for the right kind of help with it.

I would also second the idea of a woman's physio, but you're going to need to feel very comfortable with her (more so than women with some other types of complaints), so don't settle for someone with that title, but one you actively feel comfortable with.

Ouch at the thought of glass dilators ! I thought the plastic ones I got were bad enough . The last time I tried I ended up with thrush and a laceration internally, which GP thought maybe there was a sharp edge on the dilators or something .. rather put me off trying again !

I haven’t had therapy, no . I had a lot of problems down below when I was much younger (ie pre teen) including internal examination . Also a concern I was sexually abused at some point (probably all related) . I’m not sure .

I can see that it is a protective mechanism and it’s gotten quite bad now; eg they only have to say the word smear on TV and I can feel myself clam up .

I’ll try and ask GP about physio, see what if anything they offer on the nhs . Anything’s worth a try to be honest !

@HungryForSnacks

I had this too OP.

My gynecologist gave me a set of dilators which took took me a year to get in. Actually I think the first set was glass (WTF??) and i remember smashing them in frustration.

Eventually they worked. I must have gotten a different unbreakable set. The first one was very small. I used plenty of lube and tried to relax. Also I think I tried different positions - lying on your back might be too confronting.

Sorry I don't have more details. It was about 20 years ago so my memory is sketchy but I remember it being very distressing.

Yes I know what you mean re lying on back . That is a big trigger for me, so maybe if I could sit or something instead .

Hi, dilators are pretty scary. I have personally used a vagi-wave which I can recommend. Feel free to reject this if you wish but there is plenty of info on their site which does along way to explain the condition.

Hello!

I just wanted to say you’re not alone. I have never been able to have a Pap smear.

I found out I had Vaginismus when I got married. I was a virgin and we just couldn’t consummate for a really long time. About a 1.5 years later we wanted kids so I just endured the pain to try and fall pregnant which happened and had an emergency c section. Couldn’t tolerate the examinations at hospital at all which caused a lot of trauma.

After falling into depression and anxiety I started to speak to someone related in that field as well as a pelvic floor physio. First the physio just tried to teach me more about my pelvic floor (coming from a strict religious background sex was taboo and I honestly had no idea about my lady bits) once I learnt more about my condition and felt comfortable we started using silicone dilators.

At home I just took a long time inserting them, it took forever but eventually learnt about what position was comfortable, best angle etc. only managed to get to the size of a middle finger.

My husband and I tried for baby number 2, which wasn’t as painful as my first but still painful. Fell pregnant and ended up having a VBAC with episiotomy and 3rd degree tearing. Just gave birth 7 weeks ago. Still healing. More traumatised this time around even though I didn’t feel it happen with epidural. I didn’t get examinations during labour as that was one of my wishes.

I need to have examinations soon to see how it’s all healing but I’m having anxiety attacks about it. I don’t think I’ll be able to have anyone touch me ever again.

I was given plastic dilators on an nhs prescription and found them too hard and painful. Tapered silicone ones are much better.

Definitely ask for a referral to a women’s health physio. They were so much more help to me than GPs and they can treat you on the NHS, so whoever told you NHS treatment isn’t available was talking rubbish.

How horrible to tell you to force yourself- that would make the problem worse in any case. I hope you get the treatment you need from someone much kinder than that.