Hi i'm April and i am very new to this, i really would appreciate some help and advise x

Hi everyone,

I am very new to this i have never been on a forum before, so i don't really know what i'm doing or how to work it.

I have had Vulvodynia for about 2years, i have found it really difficult and i was hoping for some advice and some people who i can relate too.
My family and my boyfriend have been very supported throughout my vulvoynia although i find it very difficult to explain to them what i feel like, as they don't understand or cant relate to what i'm feeling.

I have managed to finally find medication which takes most of the pain away threw intercourse, which i am over the moon with! It took a while but we got there in the end. Although because of the trauma my sexual drive went to 0 and now even though the pain has got better my drive is very low and this is putting a strain on my relationship with my boyfriend who i have been with for 3 years. My boyfriend has been amazing threw my difficult time, but i find it really hard to express how i feel and its making it really hard for him, which i do not want.
At the beginning of our relationship i did not have vulvodynia and our sex life was out of this world! So it is really difficult for us both now i have no desire for it. My feelings for my boyfriend have not changed from the start if anything they have got much more stronger, he doesn't understand why i don't have any sex drive and i cant explain it to him very well as i dont understand fully my self or what to do about it. We are just stuck in one place and i don't want to loose him.

Can anyone relate to how i'm feeling?
Does anyone have any advise how to build my sexual drive up?

Thank you for reading

April x

Hello April

Glad to hear your treatment is working! I cant offer any specific advice as I've been celibate since I was diagnosed....however in the past I had a boyfriend with his own issues around sex and a really good book is The Relate Guide to Sex In Loving Relationships - you can get it off the Relate website - they also have sex therapists if you are in the UK

They work on the basis of sensate exercises where penetration is banned for the first few months and you slowly build up intimacy again - it encourages discussing what you what like and exploring each other physically without the pressure of intercourse hanging over things. It really takes the pressure off and helps make things fun again - it kind of makes it more like it is when you're a teenager and new to sex. It makes you remember that sex is about being intimate together emotionally as well a physically. You might want to check out stuff by Masters and Johnson - they came up with sensate focus and a lot of sex therapy is based on their work.

Going to couple therapy might be worth thinking about though - you might find that you only need a few sessions to get you both talking openly - I have had therapy in the past and I am a big fan. It helps you to stop being hard on yourself! Also you might find that once you start talking you find out your boyfriend its just as nervous as you! He may well just be worried that its him not turning you on rather than you just feeling anxious. You've been through some really big changes so you cant expect yourself to be feeling back to your old self immediately. And this might sound obvious but the more pressure you put on yourself the less you are going to want sex

I am so pleased that you have found a treatment that works for you though! this is a really brilliant first step in taking control over your own body again

Riv x

Hi Riv

Thank you very much for replying
That has been a great help, I will have a look for that book as it sounds interesting and helpful. I am currently waiting for a letter to refer me to a sex therapist. So fingers crossed it works, if not ill just keep trying its all you can do!

About my pain, I am so please that my medication is working i only get a bit of pain now but before i was having pain all of the time. The only thing not sorted yet is my pain on the outside of the front passage it is very sensitive and cannot be touched! Its an awful stabbing pain when any contact occurs.
I have spoke to my Dr about it but she has never had a patient with Vulvodynia never have the other Dr.s in my practice, so they don't really know what do do with me other than Amitriptaline which i'm on now.
They sent me to a specialist at the local hospital and she didn't seem to have much knowledge on it either she gave me Lidocane Ointment that was meant to numb the area so i didn't get pain but it hurt more that what it did with out the ointment, i felt swollen and horrible burning feelings.
So i feel quite alone as there seems to be no specialist that knows about Vulvodynia in my local area that can help me.

Thank you
April xx

Hi April

Sorry to hear you've not been able to find a specialist - but keep hunting - if you need to travel a bit further its worth it especially as you will probably only be seeing your specialist now and again. Try looking for dermatology or gynae departments that have a vulva clinic. You might want to have a look at local hospital websites and see if anyone specialises in vulva issues - you are going to find that Vulvadynia is not something that many doctors know about - I am lucking being in London but I have been to 2 different vulva clinics and one of them was bloody awful but the second was absolutely fantastic- I think we have to really push ourselves to get the treatment we want and need and that might meant being referred to several different specialists for different things

It sounds like you might have provoked vestibulodynia like me if the pain is just at the entrance to your vagina. Sorry to hear the lidnocaine isn't working - I know other people dont get on with it. I am trying physio at the moment and hoping that it helps - it works on fixing my pelvic floor problem (often fixing a tight pelvic floor can help with vulvodynia) and also trigger point work where you find the places that hurt and gently massage. If you fancy trying it see if there are any women's physiotherapy departments around you that know about this form of treatment. again you might have to travel if you can do that

You might want to look at what books are around - I am reading The Vulvodynia Survival Book which is good so far - its quite informative and also seems to help you manage your own treatment plan. I also have When Sex Hurts which I know a couple of people on the forum have mentioned and this seems to be a more basic introduction into V and other problems. Also the forums and websites have information that's really helpful and they can suggest other books etc to read. This group also has a facebook page which you might want to join - its nice to talk to people even if it is online - i dont know where you live (i am based in the uk) but i know there are quite a few groups around the country for women to meet up and have a moan about their V - I know the one in London I went to had members who had travelled quite far -the meetings only happen once every 6 weeks and the women there felt it was worth making the journey just to able to offload and chat to other women going through the same thing. so you might want to have a look online and see if there are any groups near you

Glad you are getting referred to a sex therapist - therapy worked so well for me - for my depression as well as relationships. Its so nice to be able to talk about stuff to a complete stranger - you really can just offload your worries. It helps if you really can open up with your therapist though and that's a very personal thing - my first therapist i had i just did not get on with - we just didn't click - she was lovely but i just didn't really feel she got me- so I changed therapist. so glad I had the courage to say I wanted to see someone else as the next person I saw I got on with really well and I got so much more out of therapy, so if you dont click with the person you are referred to dont be afraid to try with someone else.

Good luck with everything!

Riv xx

hi april,

sorry to hear that you are feeling down about things, but I'm glad that you have found amitriptyline helpful!
I'm in a similar position to you, with amitryptaline being the thing that helps the most, but I've also found physio useful and saw a chiropractor too.

I wanted to write back because since starting to get v about a year and a half ago, how it has affected sex between me and my boyfriend has been one of the things I have found most hard to deal with, and I wanted to share some of things I/we do to cope/make it easier.

Once I had experienced painful sex I felt really tense when we tried and I often cried because I was frightened of it hurting/I was upset because I was frustrated and worried I was letting my boyf down. He was upset because he thought he was hurting me. This meant I got nervous when we cuddled/kissed or we did anything that I thought might lead to sex, which was hard on us.

A physio I saw recommended agreeing to having a break from full sex for a couple of months. This was really helpful, even though it sounds like the opposite of what you want to do!

This meant we could be affectionate again and I could relax and we could enjoy being together more. slowly we started building up to being more intimate. At the same time I did a physio exercise to desensitize myself. This was really simply just gently touching the vulva every night to get it re-used to touch. Painful at first but then ok and definitely helped.

we now can have sex 1-3 times a month, which I normally enjoy, although it makes me pretty achey afterwards, and we space it out with doing other intimate things in between. we normally try and do it before bed so I can take some of my amytriptaline first, and can try and sleep off some of the aches. I know that's not loads but its much better than nothing!

sometimes if I have a bad flare up we have to stop for a while and I do still get quite upset about it, but we just kind of go back to being gentle and intimate for a while, if we can. I've found the best thing is being open about it with my bf if I am not feeling up to it. I think he is most upset about it when I just avoid the subject and we don't do anything or talk about it at all, or if I say I'm fine, we try, and then it really hurts me. So its better for us to be open and do other things if I'm having a 'painy' day or week, like have a bath together.

I've also found that a tummy/hips/back massage from him helps before hand too: It relaxes me physically and it's nice to do together.

Anyway, hope that's not too much information!!

Just wanted to share some practical tips that help. It is definitely a tough thing to manage in a relationship but I think it is possible with some support.

I hope you feel a bit better and things get easier

xxx