[Heliopsis]

Hi Sam786,
I am very sorry to hear how low you have been! I am deeply upset and sorry to read what had happened to you in the past.
It can be devastating not knowing which treatment to choose and what exactly is wrong.
I am living in the UK and there is treatment for vaginismus available. Do you have a nice GP?
Just make an appointment with her/him and ask her/him if she/he can transfer you to a close treatment for vaginismus – often associated with a women hospital. There they should be able to prescribe you dilators on the NHS – I think you have to pay 15£ on top – but not the full amount.

Or you could ask if they could carefully examine you and rule out anything else. Keep in mind instead of panicking at an examination (I have been there – left a couple of times in tears not being able for hours to stop crying) you can just say – stop at any time – I always say now at the beginning of examinations how difficult it is for me – and at anytime I can’t do it I tell them to stop.

Relate offers a sexual therapy/counselling which you could go to with your partner – but as far as I know they do not specialise in vaginismus. And you might need both physical and mental help.
https://www.relate.org.uk/relationship-help/help-sex

I send you lots of strength and I hope you get the help you deserve and please stop beating yourself up its not your fault!

[Heliopsis]

I am so sorry for all the pain you are feeling JD2009!
I hope you finally get the help and care you need to recover from all these indescribable pains!
It makes me so sad reading all the stories about vaginismus especially yours and all the others on these forum in combination with my own vaginismus experience.
I hope that we are the last generation of woman who has to suffer for so long without being helped!
I am wishing you all the strength to finally get well!
You are not alone and I hope you will get better soon!

[Heliopsis]

I am so sorry to hear about your boyfriend! That’s an absolute awful thing to do!!! I find his ex sound super horrible on top of it. Thats really not the kind of support you need! Its not her business to ask you about how you are and about your “problem” – she could have kept away from your relationship that would have been a good thing… How human beings can be so insensitive…
But maybe you could use your anger about all this, to find some treatment and support for yourself trying to channelize all this pain into something, which will eventually make you feel better. From my own experience – ignoring vaginismus and not talking much to the partner does not help, it was often causing distress to my past relationships. But I agree I find it horrible to talk about, it makes me feel not as a whole person, if I tell people. And actually I don’t want them to ask me about it or how I progress or anything really. Don’t know if anyone’s experiences it this way.
One truth might be as well, it help having a partner supporting you, but initially the steps for treatment you have to go by yourself. It might could help you asking your sister to come with you to appointments talking to someone medical who can help you. Or ordering some dilators trying yourself to start off with it. But it might help you seeing your doctor talking it through and mentioning your suspicion about vaginismus – I hope they know what it is. I had various experience about people not knowing about the condition. I send you lots of strength go and get it sorted and forget about this guy – there are so many nicer guys out there who would never do that to you. And don’t blame your vaginismus for it or yourself!!!

[Heliopsis]

You are right it is very difficult to be transferred in the UK it took me two years of keeping on asking the GP – and first she referred me to “Relate” for sex therapy – which might be available were you are? – they can explain how the dilating treatment is usually done – as they are a charity you have to pay a certain percentage of your salary for the treatment – but if you struggle it might be worse while to go there – because they give you like 15 – 20 minutes slots of talking time – However this treatment didn’t do the trick for me so than after that my GP was finally willing to transfer me to the women hospital – were I am seeing a nurse specialised for this kind of treatment – they than they prescribe the Amielle comfort (pink) (you pay 15£ by yourself if I remember right) not the Amielle care (green) (which is for people after surgery – take care that they prescribe the right one – they prescribed the wrong ones for me first…) so there is in fact a treatment available but you have to got through this steps to get to it??? And than they see you for 5-10 minutes in regular intervals with your partner to see how you are getting on with the treatment. I am a bit a harder? (if there is such a classification – I personally doubt that) case by not being able to enter tampons, but nevertheless they really should give this treatment option to anyone who is suffering it is not a very expensive treatment to offer – if it only entitles dilating – It makes me pretty angry hearing that they put you off. But I would go with Kalsoon order some dilators – which are probably more comfortable than the Amielle comfort anyway and try by yourself. Or get some sexual therapy from the private sector if alone is to difficult?

[Heliopsis]

I completely understand why you are angry! I remember that I couldn’t afford to buy my first dilator – pretty horrible not to speak from the costs of the counceling service they referred me to. So I had years in-between buying the next dilator it was terribel. But nowadays there are quite cheap dilator sets. You could buy one and start dilating by yourself? I didn’t read your post before so don’t know if you are doing that already? How much are the costs in the US to treat it, if I may ask? I am from Germany myself and life currently in the UK were the treatment is free – you have to pay a tiny bit on top for the hard plastic dilators they prescribe (they prescribe here the Amielle – not the most comfortable but I assume it kind of does the job). However they do not offer this Botox treatment described at the Maze centre.

I would date anyway – sex is not only about penetration – and just cutting yourself of it might make you feel even worse? I always dated and if guys haven’t been patient enough I just was thinking to myself – well fine its just not the right guy and one of the positive sides of vaginismus is probably that only someone who truly likes you will stay with you – that way its pretty easy to find a nice guy. However I know its enormously frustrating anyway. I remember I was kind of attracted by a guy once and we were meeting casually and one night we were still drinking at his place and than I was about to leave and he said come on I know you would like to just stay – and I must admit I was pretty drunk – I just had to laugh a bit sarcastic – thinking to myself – gosh you don’t know how difficult that is for me… because we didn’t kiss or anything before I just couldn’t imagine talking to him – he must have thought I was a bit crazy… he never spoke to me again… But I suppose after that I accepted that one night stands are rather difficult for me so I only searched for more secure and relationships. And than I would explain that there are difficulties if it got more serious. I hope that helps a tiny… It makes me super angry as well that money is the problem for treating you – it really shouldn’t be the issue anywhere in the world :-(. I send you lots of good mood to get through this hard time.

[Heliopsis]

Hi Rosamund! That are great news! Congratulation that you were able to insert the dilator fully! I am amazed you could stand up the first time using them – That must mean that the Pacik dilators must be quit comfortable? – I usually only dilate lying anything else is uncomfortable for me. But I remember reading in Dr Paciks books that some people used them whilst going shopping etc… and that the dr paciks dilators are shorter that might mean its easier to do these things? – its a good question how they keep them in place – they might have really tight pants? I hope someone who did that will reply to you. But I think the key of dilating is doing it regular for 5 minutes – whilst watching a film or similar. That will make it already much better. I am so glad you could progress to three so quickly!!! I hope you will be able to continue using them painfree soon! All the very Best for you! Sorry for not having the right answer for you.

[Heliopsis]

Hi For_Her,

https://www.sh-womenstore.com/vaginismus-dilator-set.html

oh I just saw they offer as well the bigger sizes in vibrator shape.
Don’t know if of any use. good luck.

[Heliopsis]

Hi For_Her,
its very difficult to insert a vibrator if suffering from vaginismus – there is one set of dilators which have a vibrator bullet included, I am aware of:

https://www.sh-womenstore.com/sh-vibrating-silicone-vaginismus-set.html?rocket=home-most-popular

I do not know if the surface of them is smooth and rigid enough to insert them, I never tried them. I find that it is easiest to insert very resistent material like hard plastic or glas.
As they state there that the material is soft I am not sure if they are good for vaginismus patience? I suppose if you start of dilating they might seem to be less frightening? Did anyone here ever tried them??? Or other softer silicon ones?
A further point to think about is the diameter size from which they start often dilator sets start quite big. This set seems to start very small which could be a benefit – but they don’t progress to the bigger sizes which are needed at the end. So I suppose it might be an idea to have for certain a harder set made from glas or hard plastic going to the size you need – on which you can use any lubrication – and try some vibrating ones if that helps additionally. However I find dilating not very erotic so never missed the vibrating bit.
Good luck in finding the right thing! And if you should try other ones I would be very interested in your experience. I am still wondering and are very interested which ones are the best ones. I assume shape etc. must be important too and don’t worry to much about the money (- I know dilators are expensive and I struggled to have the money for them as I first started – which was horrible – but don’t let your healing be interrupted by money issues make it happen if you can – rather sooner than later – as longer it takes to start as worse it gets -) it is much worse if they are painful – and shape and quality can make a big difference. All the very Best for you tow say best greetings to your wife!

[Heliopsis]

Hi Rosamund,
It might be beneficial for you to try to relax before you start using the smallest dilator. My therapist told me to try to feel the pelvic floor muscles and by breathing in tense them “drawing them up” and by breathing out relax them “let them slip down”. Than by dilating one can just put the dilator at the vaginal entrance and usually it does not go in immediately so one just holds it in place and keep applying a gentle pressure never push further if it starts hurting just leave it there and wait until it gets better. Than she recommended using the breathing technic. By breathing out after doing it for a while you body might start sending the signal to relax you pelvic floor allowing you to apply a tiny bit more pressure to enter the dilator slowly. I was told it can take up to 20 minutes or longer for the pelvic floor muscles to stay in spasm not allowing you to enter the dilator. So patience might help you. I find it always good to watch TV whilst doing it to take my mind of it. I am using Deumavan cream for lubrication. https://deumavan.com/en/products/ it was once recommended by one of my gynaecologists. It keeps moist for quite a while which helps a lot. It is not declared as lubricant so I don’t know if any health risks are involved.
I hope that makes sense and helps you a bit! Have a good day!

[Heliopsis]

Hi Freya.a,
you are very welcome! I know doing the dilating everyday is very hard. It interferes so much with life! I had to travel so much work related and it delayed my progress enormously. But eventually it did pay off for me and it will for you!!! I am 33 and I had two starts in dilating one time like 6? years ago, at the end I gave up – my relationship broke – and than I picked it up again two years ago (motivated by having a new partner and I finally wanted to get it all sorted…) – and I just made it finally to the last one :-). But you are right at the beginning I could not imagine that the biggest one would get in pain-free and it really just started to get better, after using the biggest one now for 5-6? month. It still feels like it stretches a lot. I was for a long time very frustrated not progressing anywhere. I keep my fingers crossed for you and hope you will progress better than I did!!!

[Heliopsis]

Hi Freya,
I am impressed by the progress and your determination to go through it again! I’ve not been treated at MAZE and I’ve not used the botox treatment so I will not comment on it. I think Dr. Pacik has a paragraph in his book about progressive dilation. The title of his book is: “When Sex Seems Impossible: Stories of Vaginismus & How You Can Achieve Intimacy” you can buy it for example on amazon. I think he recommends to use them twice a day and for up to 2 h additionally sleeping every other night with the medium one as soon as you get to the one. If I understood correctly. I am very interested how many different approaches there are in dilating, so I bought his book – I found it is a very interesting approach.
In the UK were I am treated, without Botox – they recommend to insert the dilator for 5 minutes every day and starting with the smallest one than going up to the next size when the first one is not painful anymore and goes in without much waiting. It took me almost two years to get to the biggest size like that. Than they recommend to insert each size together with your partner (doing that once a week). If that is successful and pain free they move on to a phase which is called containment were the woman is on top of her partner – who needs to get an erection and the woman lowers herself down for only a centimeter at the time – involving no movement and thrusting.
I suppose thats not what you wanted to know and I hope someone else with Botox treatment at Maze will give you better advice!!! Don’t loose your courage! All the very Best for you! Keep going! I hope you will feel better soon!

[Heliopsis]

Hi Rosamund, I am very sorry to hear that you are feeling so low! It was the same for me that the Pap smears or any vaginal examinations are very painful, by being diagnosed with vaginismus. I burst out into tears and an examination was just not possible – I was so paranoid that I signed off to have no examination for quite a while.
You should definitively talk to your health provider about treating it! Whilst doing the dilator treatment my doctor recommended to not have physical examinations. My therapist always suggested as well to tell the person examining you that you experienced problems in the past. They than try to be very careful and I always agreed with them that they would stop immediately if pain would appear or rather if the pain would be unbearable. I still hate going there but after I was able to enter the last (biggest) dilator I went for another examination, which was not great – but it was bearbale pain wise. And I was proud that I could finally do it. I hope that helps you! Please get the help you need – you will feel much better as well in the future if you decide that you wish to be with a boyfriend! Lots of good wishes!!! I hope you will feel better soon!

[Heliopsis]

Hi Leko19,
I am really sorry to hear how you are feeling!!! I have the impression that often in Vaginismus treatment mainly adresses the physical side of things (by dilating/botox). There might be something emotional which needs to be sorted out to make you feel more comfortable with yourself? – I experienced the same feelings before. Mainly due to the fact that I felt pressurised to “work” and that it had to work and that my previous partner felt very devastated by me refusing to be intimate with him – it was like a vicious cycle, which made it worse and worse. For me the acceptance of my recent partner of my wish not to be intimate if I don’t feel it without blaming me or making me feel a lesser person helps enormously and sometimes I can get in the mood afterwards if I am not pestered to be intimate if I can just take my time. And by being the person who decides. However we are not attempting penetrative intimacy whilst doing the dilating treatment.
Sometimes if people feel depressed it can affect arousal and desire as well. I send you lots of strength! Don’t give up and don’t be harsh to yourself! You need to feel comfortable with yourself and feel aroused before anything should happen. Don’t feel guilty if you can’t do it.
I often do things which I really love which do not have anything to do with the “problem” just to feel well and good with myself, like baking or gardening (I love seeing plants develop). As well we try to do that together in our relationship (like going for long romantic walks, to an art market) avoiding the topic and just relax. To get a healthy distance to all these treatment and fighting. To feel like a normal person. I hope you feel more happy soon!

[Heliopsis]

Hi Yami,
How are you doing with the dilators you bought? – I have the experience that there can be lots of difference in which dilator sets you are using. It depends for one – how quickly they increase in size and how small the smallest is. And secondly from what type of material they are made.
The first time I tried dilating I bough the smallest vibrator I could find – which was mad out of a type of soft silicon and not very stable – there was no way I could enter this one – it was a) too big; b) it wasn’t stable enough and c) it had this rough surface which caused way to much friction.
The main thing I would say from my experience – don’t know how it is for other people – just joined this forum – that you have a set which starts with a very small size and increases slowly. The material should be made out of a hard material either glas or hard plastic, which provides you with a good smooth surface. This smooth surface and the rigidity of the material will make it much easier to enter. Sounds strange at first but it is true.
Additionally you should use a really good lubrication. I am using “Deumavan”cream after a recommendation of one of my doctor: https://deumavan.com/en/products/ Its not a lubricant and I am not completely sure if its good to use longterm, check with your doctor. However it helped me at the beginning because it keeps the dilators lubricated for quite a long time and makes it easier to enter them. Compared to all the other lubricators I had tried before. My therapist ones recommended to use a layer of water based lubricant and than a layer of oil-based lubricant to make it slide better and keep moisture longer, I tried and I am not sure its much better – but it might work for some people? But it never was as good as this “Deumavan” cream for me. Any experience here, which lubrication works best?
I got some dilators hand-made in Germany prescribed there, which were enormously expensive I think I paid like 180 euros for each single size (got three in the end), they were made out of plastic which is used for dental stuff and they are incredible comftable and quite good to enter:
http://vagitom.com/vagitom.html
but I think they are too expensive if not covered by a health insurance!!! Which wasn’t the case for me – and slowed my treatment enormously because I just simply couldn’t afford to buy them at the time. I wasn’t aware (as I was never told or diagnosed with Vaginismus back than (like 10 years ago), they just told me that I had some kind of scar tissue at the entrance of my vagina, which would cause my problem and that either dilation or an operation would cure it) – that in the international world they are called dilators and are much cheaper to have. Now ten years later I tried again a treatment by living now in the UK my doctor actually diagnosed me after 2 years with vaginismus and after one year of waiting time I got to a nurse appointment in the woman hospital, which prescribed me quite a cheap set of dilators made off hard plastic. They are way more painful to enter than the other ones – but if you get over it it makes a big difference and it really works and it gets slightly better each time! They prescribe the Amielle Comfort here: https://www.amazon.co.uk/Amielle-Comfort-Dilators-Instructional-Vaginismus/dp/B0045XBSWC/ref=sr_1_1_s_it?s=drugstore&ie=UTF8&qid=1533910613&sr=1-1&keywords=amielle+comfort
and they recommend not using the biggest one its to big and not necessary. I hope that helps a bit. And I hope yours are working fine! – but I assume you could compare the smallest sizes to see if your set starts with the right size?
I wish there would be more comfortable ones out there, which are affordable – but I am on the last one now – so I am not sure if I would like to spend more money in finding something better. Any experience out there which ones are best? How are the crystal delights they look quite good. However I am not sure how the shape makes the feel? Is this small tip with the quick increase easier to enter?
It might be interesting to know that in Germany they recommended to leave the dilators in for 30 mins each day, which is possible with the ones they prescribe. Here in the UK they recommend to use them only for five minutes, I don’t think you could use the ones they prescribe for much longer and – it gives you much more lifetime back. How is it in the US, what do you guys recommend? How long do you use them every day?
I am very puzzled why there are not better treatments in place at it seems to be quit “simple” to be treated it is crazy that people like myself suffer from this condition for so long. And that diagnosing it alone took maybe 14 years – I remember the first time I went to get a gynocologist being 17 to get the pill prescribed being with my first boyfriend. And I told her that I couldn’t enter a tampon if that would be normal. And she just replied don’t worry there are lots of people who don’t use them. And later I went there with my boyfriend being totally unexperienced, but we told her that having sex was very difficult and she just told us to relax and use more lubrication… So to everyone experiencing this – please don’t stop trying to find the right support. But I suppose when you end up here in the forum you already figured out what your condition is… I wish for the future that the condition vaginismus will be better known and quicker explained to people. I am glad to see that people made this forum here – very happy to see!!!
I sent you lots of strength I hope you get through the treatment much faster than I do!

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