Vulvodynia/Vaginismus....whatever you want to call it...lets face it its sexual pain...and its a taboo subject!

[Little_Miss_IBS]

Hi,

So I have suffered a variety of different pain levels over the last 5 years a mix of vaginismus (inside pain) and provoked vulvodynia (outside pain).

I have gone through various different gp & gyno appointments and been signed off as having a perfectly healthy down below which still doesn’t explain my pain or lack of libido.

It was recommended I seeked a physco-sexual therapist, so I found one and am awaiting my appointment. However she did recommend that in the mean time I read a book called ‘when sex hurts – a woman’s guide to banishing sexual pain’ it’s an interesting read and backed with information from this book I convinced my gp to run hormone blood tests (for which I had to come off my contraception pill) and she has prescribed me amitrypteline at a 10mg dose to act as a muscle relaxant.

Since taking the amitrypteline I have managed to enjoy some ‘foreplay’ with my OH which will hopefully work to increase my libido again (fingers crossed) however I am still abstaining from my contraception in case they require more bloods so now the decision I have to make is to either find a non-hormonal contraception or start retaking my old contraception and hope they don’t require further bloods so I am able to test the work of the amitryteline at a 10mg dose before decided if I need to up to 20/25mg which is the max my dr recommended for me to try.

I will also add that I have and still try to persevere with vaginal trainers & a bio feedback Kegal Trainer but haven’t yet seen a noticeable difference. (Perhaps my next step will be to seek a trained physiotherapist after trying the therapist??)

Another book I tried reading was 7 steps to pain free sex, this has some pelvic floor exercises to try as well as intimacy exercises to try with your partner when you are ready to work on re-finding your libido.

I am still trying to learn more about this and other methods to try to solve the route of the pain in hopes to banish it…however it would appear that is can be linked to a lot of different underlying things such as Irritable Bowel Syndrome (which I suffer a bit with), Anxiety/depression, trauma or Auto-Immune diseases.

I have noticed that it is a very unknown thing and that’s because people just don’t talk about it openly…which I’d love to change….I’m just not sure how to go about breaking the taboo as I struggle to talk about it with my OH & drs let alone anyone else!

[Joolibee]

Sorry about your pain. The fact it is such a taboo subject can lead to secondary suffering in the form of emotional distress and anxiety. This in turn can exacerbate the pain. I would encourage you to seek a specially trained pelvic pain physiotherapist. This kind of pain is often linked to hypertonic pelvic floor muscles and it sometimes requires internal work, as well as execercises, to reduce the muscle tone. I was advised against kegels until my muscle tone had reduced to a normal level. I’m not suggesting that you should stop the exercise, but I do think that the right physio would be able to advise you better. Finding the right physiotherapist can be difficult. The pudendalhope website has a list and if you are in the UK or Ireland you could look on pelvicphysiotherapy.com, which contains a list of Manual Therapists.

I hope you don’t have too long to wait before you see the psycho-sexual therapist. Good luck.

[strongmouse in reply to Joolibee]

Yes pain of any sort can be caused by a variety of triggers including anxiety and tight muscles. It can become cyclical and it is a matter of breaking the cycle or triggers.

Little Miss IBS you are talking about it on here and so you have the words to express your concerns here. With regard to talking to your OH find some time when you both are not rushing around and ask if you can sit down and talk about some thing which has been bothering you. If your OH is happy to listen and talk then explain that you have pain when having sex and how it affectes you.

Talking about intimate things is part of developing a loving relationship. It is both listening and talking and requires a degree of openness and trust. You might want to share with him parts of any books or information which you have found useful. Our bodies are interdependent parts, not separate. So our sexual organs and sexual feelings are a part of us as much as breathing and eating!

I agree that generally we need to be able to talk about issues we have more freely, and I am sure that as you open up to your partner and health professionals you wil find help and support. Although some people may be shy and hide their shyness by being brusque it is important not to let that stop you getting the help you need.

You seem to have made some steps in the right direction. In some areas of the country there are Women's Clinics and these can be particularly helpful.

[PurpleTea]

I also would suggest finding a women's health physio. As well as there being a list I would just google pelvic floor therapy and your location. I've found a number of therapist locally that are private that aren't on the list. I wouldn't do any pelvic floor exercises (except the ones designed to teach you how to relax your pelvic floor) until you have seen someone as you could be making tight muscles tighter.

As for the libido I would suggest trying things on your own. I doubt many people would have a libido or want to try anything too intimate if they've come to expect pain each time the attempted it. Each something you will probably have to relearn to enjoy.

Also I know in my area there are some acupuncture practitioners who treat pelvic pain and gyno issues. It didn't help me but I've seen a few people have some success with it for different health conditions so I don't know if it would help you but that may also be worth a try.

I found pelvic floor relaxation exercises to be of help more than anything.

Good luck x

[NuttyDashy]

Hi there. I hope since you posted this message you have been able to find some relief. I just wanted to let you know what worked/is working for me - diagnosed with vulvodynia and vaginismus 3 years ago after I saw a psychosexual therapist who referred me to a specialist for that specific test (a few of GPs looked down and said everything is fine and to try not to stress about it!!). I then saw a gyna (I think) who taught me 'how' to massage my vulva but her technique didn't help one bit. Ffwd 2 years later (early 2019) I discovered proper pelvic floor physiotherapy with an amazing professional called Caoimhe McNamara based at Six Physio, Monument, London. It changed everything for me to have a warm, gentle, friendly professional I trust to do the muscle release exercises on/in my vaginal, while simultaneously guiding me to focus on my breath and very gradually on releasing the tightened muscles. Absolutely changed my own approach towards myself, the condition and my recovery.

The muscle release work was unexpectedly very emotional - I've read/heard that it's likely that I had been holding on to a lot of tension and unprocessed difficult emotions. This corresponds with my experience because as my recovery has progressed my outlook and composure have somehow naturally improved as well.

Anyway, when I first noticed that the physio was overwhelming, I looked around and found the Internal Family Systems Therapy to be extremely helpful in allowing the emotions to come up and in addressing and resolving them as well. I also started a daily meditation practice and regular hip/glutes stretches because this whole area was very tight as well.

It's taken me a fair few months to recover (I am now about 90% pain free), but that's with fitting the physio around work and travel and family commitments.

I feel like the vaginismus is now almost or entirely gone; because of this my awareness is now on the pain from the vulvodynia (the remaining 10%), which I am approaching the same way as the vaginismus physio. It's just that it needs extra time to really work on those wound-up muscles and nerves.

Happy to give you more detailed info if you want it, but the main thing that I learned throughout this whole thing is to be kind and compassionate towards myself at all times and to listen to what my body is trying to tell me to address.

All the best xx