vulvodynia

Hi my name is jen and i have been suffering from vulvodynia, means the vulvar of my vagina is extremely sensitive, so painful to touch (cant have sex at all) and have to avoid wearing any tight knickers, i am on amitriptyline and its not helped, also tried numbing it with lidocaine and just putting a moisturiser on that i was prescirbed. None of these things will help and my doctors wont do anything, does anyone have any suggestions to try?

17 Replies

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  • Hello Jello

    I get this myself on and off (I don't have an official diagnosis but endometriosis specialist has suggested it) and can fully sympathise. I myself haven't found anything that has helped but I am taking some of the medications recommended for the condition to help with my pelvic pain. It doesn't sound as though your treatment is helping and I'm wondering who diagnosed you? It might be a good idea to find a specialist who will most likely be a gynaecologist or can be a specialist working in a sexual health clinic who has a special interestwith the condition. Are you in the U.K.? I have posted a link to a charity that provides support with vulvodynia, I don't know if you have seen it before?

    vulvalpainsociety.org/vps/i...

  • Hi, try and find a physiotherapist that deals in women's health, physio has really helped me. It takes time but it's something I'd definitely recommend that helps with this type of pain xx

  • May I ask what type of physio you had? What exercises did you get given etc. My current treatment is not working and I want to come up with a list of possible next steps to discuss with my gynaecologist.

  • It's women's health physiotherapy, it's internal and external. My physio has narrowed my pain down to an area near my bladder and uretha so I'm now focused on that and she's trying ultrasound treatment to see if that helps xx

  • Hi. I also have vulvodynia and was finally diagnosed in 2003 at my local GUM clinic who I go to every six months or so for reviews under one consultant there. Where abouts do you live?

    Definitely echo the others comments that there is more treatment than just amitriptyline and lidocaine. I only wear bamboo knickers now and leggings or skirts or.jogging bottoms. Can't wear jeans anymore. I've had physio and more recently acupuncture. The charity link will be a great source of info and they have a book you can get witj more info.

    You have to find what works for you. For me I now use a sit to stand desk and gel cushions to sit on. Tens machine is my saviour. Various meds, physio, acupuncture really helped, go to body balance and exercise although that is painful witj the friction but shower straight after and use cold compresses and usually a lie down! Cold compresses are brilliant (wrap in a flannel). Check what you are washing with as that can irritate. My period blood irritates me too and the towels so just wear old knickers as much as possible. And rest so lying out. Oh and glutes get so tight so massage on glutes which physio first did. There are also internal and external stretches to do that physio would give u. As mentioned by need needs to be women's physio.

    Shout if you want to talk or have any further questions xx

  • Hi Jello 101. I agree with all of the above comments. Also, have you come across Amy Stein's book, "Heal Pelvic Pain"? She suggests a number of tips and exercises. Amytryptiline didn't help me, but I find that Gabapentin helps somewhat, and when I lived in France for a year I was prescribed a low dose benzodiazepine, which also helped. You are not alone.

  • Hi Jen, I understand exactly what you are going through and you have my heartfelt sympathy. I have found a few things that help;During a flare up I have a memory foam cushion with a hole in available online for when I have to sit or travel by car. I take calcium carbonate and potassium citrate every day to make the urine alkaline and allow the urethra to heal. I also take antihistamine during a flare up to bring down inflammation. I switch to bladder friendly foods and try to wee standing in the shower ( with it on preferably!). I take gabapentin but I can't say in does much for me. Remember sex can be so much more than penetration, I've got very good at oral sex when things are bad. Be very careful with what u put near your skin, no washing powder, nothing. Only pure vit E oil to help with moisture. Sorry to pack all this info in, I hope it helps. Xxx Simone

  • Do you have pain anywhere else other than the vulva? Any pain in your clitoris? Is the pain bilateral or just on one side? Do you only have pain with touch, or do you have pain when there is no stimulation at all? What type of pain is it (burning, sharp, stabbing)? I have similar pain, but also have pain in my clitoris and lower left side. The pudendal nerve is the nerve that supplies sensation to that area, so if you have pain, that nerve has to be involved in some way. I suggest you see a pelvic pain specialist and not just a general gynocologist. They might be better equipped to explore why your pudendal nerve is misfiring and what treatments are appropriate. It is a terrible place to have chronic pain, and you have my full sympathies. Good luck and stay strong.

  • pain mostly just around the vulva but other areas are just unusually sensitive, pain is also mainly provoked by touch but also after walk along time, tight clothing or any perfumed moisturisers (dont use), GP's dont really seem to take me seriously as young and just persist to give me swab tests which come back clear every time, thankyou, you too.

  • I have allodynia on the right hand side since having a baby. It burns as soon as it comes into contact with anything which is pretty hard to avoid. I'm on pregablin and imipramine and whilst it's helped the internal throbbing, nothing helps the burn and sensitivity but pregablin does help many so maybe worth a try.

  • My dr told me to put lidocaine gel 5% on a cotton ball and put it right at the entrance to the vagina every night before bed. Somewhere I read that using those small round cotton pads (sometimes used to remove makeup) are better because you put your lidocaine on there and spread it around, use the amount each night that your dr prescribed. Get a small plastic bottle that has a tip cap on it and fill with water. Use this every time you pee and just dab the excess with unbleachex toilet paper. I put Vaseline on the vulva and down to the opening quite a few times a day. My dr also prescribed Estrace for me. I take Tramadol just one 59 mg a day and have hydrocodone 5mg/325 acetaminophen. I also take 200mg Lyrica twice a day. Now if you are in a flare it will probably still hurt but it takes the edge off. Keep doing this every day and it should start feeling better.

    Hope some of this helps💜

  • My 12 year old has vulvodynia and the lidocaine 5% burns her so her vulva specialist recommend Instillagel which is a milder form and can be used as often as every 30 mins.

  • I can understand that. That is so terrible for a young girl. I found some new product called Astro Glide which is helping me some. It's aloe based and I am hoping it helps heal me.

  • Vagikool it's a gel ice pack shaped to go in your pants it's the only thing that gives my 12 year old pain relief from her vulvodynia. They sell them on amazon £25 but worth every penny. If it works for you get a few so you don't get caught out. We have 4 of them now at home and all my siblings have one each for when we visit them which is nice of them all. Also memory foam hemaroid cushions. She uses Instillagel as it's less painful than lidocaine and can be appliesd as regularly as every 30 minutes.She also has physiotherapy doesn't eat brown bread or chocolates as they say Oxilate crystals forming on the nerves may cause more pain. White chocolate is allowed 😀. Probiotic drink was also recommended by the physio. Acupuncture helps too. Hope this is helpful ☺

  • Hi,

    I just came across these posts in this thread. In response to what you said about no dr's in SC I had found one in SC at an orthopedic center. He was listed on one of the sites, I think one for Pudendal Neuralgia. I live in Atlanta and have been going to him on and off for about four years for Trigger point injections and Botox. They helped a lot. I also came across the article about Dr Prologo and went and did the cryoablation and yes had to have the injection first to see if it worked. It helped and he told me if it didn't then it wasn't oudendal neuralgia. Well it's been about almost two years. I can say it didn't totally help and I believe I have other things going in since I was diagnosed with IC and Vulvodynia and chronic pelvic pain also 10 years ago. My pelvic muscles the levator and obturator internus on the left side are almost always in spasm from all this. I have had several years of physical therapy on and off and am going again. I would love to find out more about the stem cell paste mentioned. My pain management does stem cells but not for pelvic floor and they told me it was quite expensive. I am 65 and it's getting harder for me cause I'm so worn out from all this. Kindness and health. Bettyfl

  • Can you email me about the paste. I have extreme v symptoms my email a dress is phyllisrentie96@gmail.com

  • hey,

    I remember the first time I had this problem it took 3 whole months for amitriptyline to work at 50 mg ...I have had pure nerve pain however ...whereas some cases of vulvodynia seem to be a problem with the skin or tissue...if you've already gone 3 months with no improvement on amitriptyline ,you can change to cymbalta or lyrica. I used to also distract myself from the pain and sensitive nerves by watching lots and lots of movies :/ it helps

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