New here... Vulvodynia sufferer

Hi All, I've just joined HealthUnlocked.

Just wanted to let you know my story and hoping that there are members out there that can share some tips and tell me I'm not alone.

I'm married and in my early thirties but haven't been able to have intercourse for many many MANY years. My husband and I really want children and I'm worried that we will never be able to have sex again let alone conceive. I sometimes cry when I see pregnant women or people with babies/children.

I tried to have smear test at the doctors today - it hurt too much and I had to stop the nurse. I'm still feeling very uncomfortable now, nearly three hours later.

Need to resolve this awful pain that is ruining my life. I am always thinking about Vulvodynia. I'm determined to make this pain go away and have a healthy sex life.

Thanks for reading!

14 Replies

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  • Google Vulvodynia NHS Choices.

    Have you seen your GP to ask for referal to Specialist?

    You could ask for your computer records on this referal to be 'hidden' to ensure strict confidentiality if you wish.

    All the best with this.

    X

    🐥

  • Hi,

    Yes, I saw my GP yesterday - first time seeing this GP as I've recently moved to my area. I discussed seeing a therapist and a specialist and he is going to look into it for me.

    Thanks x

  • Ah good! Hoping he was sympathetic and can find you someone. If you Google women's physio in your area there's quite a few that deal with vulvodynia and you don't need a doctors referral you can just book yourself an appointment, you'll have to pay and I've found price can vary from £40 - £80 a session but might be worth having a chat with a physio xxx

  • I'm def going to do that. Thanks so much x

  • Ah that's so horrible for you, definitely go back to your doctors and ask for help, I thought I had vulvodynia and I saw a specialist and he said it was more than likely nerve damage and that meds and physio would help, it's been 1 year of meds (pregablin) and specialist women's physio and I've gone from a pain level of 7/8 to 2/3...there is help out there, unfortunately you have to not give up and keep explaining to your doctor how it's effecting your life, does your doc know you've been unable to have sex for such a long time?? Xxx

  • Thanks B1hopefu

    I discussed the history with my new doctor and the nurse yesterday. They are so nice there and I felt like they are willing to help and I'm being taking seriously.

    I'm glad your pain has reduced x

  • Hello. My 12 year old daughter has had vulvodynia for about 4 months now. I ended up go ogling her symptoms as the Dr's didn't seem to be doing anything so I told them what was wrong.

    She is seeing a really nice vulva specialist, a phisiotherapist an acupuncturist and is waiting for placement with a psychologist.

    The specialist recommended an ice gel pack called Vagikool which goes in the freezer and is shaped to fit between your thighs comfortably as the cold can give relief. It is an absolute godsend as that's the only thing that takes the pain away or down to a manageable level. She also prescribed Instillagel which is a more diluted form of Lidocaine as the 5% cream hurt her too much. The gel is gentle enough to be used as often as every 30 mins if you need to.

    We tried emuaid but it didn’t seem to work.

    Since getting the packs my daughter has gone back to school having only managed 8 days last term she couldn't afford to stay off but it is not easy sending her in in pain but the ice helps.

    They stay frozen for about 30 mins and cool for about an hour. They are not cheap at £25 each on amazon but worth every penny. She even asked her grandmother for one for Easter instead of eggs😂 as they say chocolates may make it worse due to oxidation crystals forming on the end of the nerves but she is allowed white chocolate 😀as they are low oxilate she isn't allowed brown bread either and she can't stand white bread so not a happy bunny.We have 4 Vagikool so we don't get caught out and she takes 2 into school incase she needs them through the day she can get them from the freezer.We take one out in case in a little cool bag.

    The phisiotherapist also suggested she have a probiotic drink or yoghurt everyday to build up active bacteria and to eat well as constipation can make it worse.

    Acupuncture helped a lot as that was the only thing that would help her sleep but it is not cheap. She went from being up till 5 am in agony for weeks to being asleep by 10.30 pm after her first session.

    We also got her some memory foam cushions the type you get for hemaroids and she said sitting is much more comfortable at school and in the car as nothing is touching a surface to aggravate the pain and it relieves the pressure and some of the pain.

    She seems to be getting better and has longer periods of no pain and we are hoping it will go away. The phisiotherapist said it would go away and not to give up.

    Hope this helps ☺

  • HI, I'm so glad your daughter has such a supportive and understanding mum and I hope she continues to get better.

    I am going to purchase some Vagikool on your recommendation.

    Thanks so much for your advice. x

  • your welcome and I hope it gives you some pain relief. Our new gp is having blood tests done to see if she needs any supplements and to see what her oxalate levels are like. I am getting her a portable tens machine this weekend I will let you know how we get on with it ☺ Take care and try to relax easier said than done I know 😩

  • Wow, hard to imagine this happening to one so young. I'm 53 and have had it for seven months with no relief. I will try the vagikool as I've just been using a frozen water bottle. I find a low oxalate diet helps as well. I had chocolate and peanut butter ice cream last night and OUCH!

    Praying for your daughter that she finds permanent relief!

  • Hi. I am not sure if I have vulvodynia or not. I know how you feel about struggling with intercourse. You are not alone. Let me share my story.

    I didn't have my first sexual partner until the age of 25, two years ago, and I found intercourse very painful but I thought it was normal losing virginity stuff. After 6-9 months I saw my GP who sent me to a psychosexual counselling. The psychosexual therapist also referred me to a skin specialist at the same time. The skin specialist diagnosed Lichen Sclerosis (skin not having enough elasticity and so labia tearing) so I was put on steroid cream and dialators but after a year of doing that and not having any improvement I was sent to a Gynaecologist.

    She disagreed with the first diagnosis and thinks I have vaginismus. I was told to try lidocaine cream to numb the area before intercourse and was told that intercourse is possible for me. While it improved it for a short time I now split/tear more than I used to so clearly it is not possible for me. I was supposed to have a six month follow up in March but it has been rescheduled 4 times and I am worried that I'm just not a priority. When I called the secretary to the gynaecologist I was told she was away each time my appointment was changed. I am worried that this will continue to happen.

    My boyfriend is incredibly supportive and doesn't get frustrated with the situation however I do. I want to cry every time I have to tell him that intercourse can't happen but I don't like to talk about it too much in front of him or my problems will feel like the focus of our relationship. I'm naturally very sensitive about it. My best friend, female, listens and sympathises but it's hard to share with her because she and her husband are currently thinking about trying to get pregnant and are not experiencing any problems. I don't know if I'll ever get pregnant and even if by some miracle I can last through the pain to conceive I'll never be able to give birth the natural way and Caesarian frightens me.

    It's nice to find a group like this and know there are people out there who suffer too.

  • My Daughter is seeing a vulva specialist at a Sexual health clinic. They have walk in clinics and to be honest they have been more useful than the gynaecologist and they seem to see you quicker and may be more helpful with regards your sex life. Hope this is helpful.

  • My daughter is being seen at a sexual health clinic by a vulva specialist they can hopefully give you advice on helping your sex life.Because they do walk ins you won't have to wait too long. Get a phisiotherapist appointment with a woman's health specialist if you dont have one and i can highly recommend Acupuncture the nhs sometimes pay for it and some phisios practice it. You have to be relentless with your Dr. I was at the gp's every other day.

  • Im on very same level hun its so horrible

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