Thanks so much for your reply its really helpful. im sure its Vulvadynia as lidocaine really helps . ive been in HRT for 5 years and only recently started bleeding . DR thought i wasnt getting enough Eostrogen so has put me on pessaries . Im going to ask for private referral after your comments . Thanks so much
Hi, Ive suffered with vulvodynia for over 40 years on and off, ive had very long periods of no symptoms at all (almost 10 years once) and months on end with varying degrees of pain and discomfort, sorry to sound negative but to say shes been cured is missleading....If any of you are on Facebook I recommend joining a private group on there called The Vulvodynia Support Group, there are over 5k ladies with this awful condition, all with fantastic advise and support, it had literally been a life saver for me and many others x
Hi All,
I have been suffering now for 8 or more years.
Visited the GP again last night in one final attempt to get some relief before I go down the private route.
She has prescribed me Lindocaine cream, which I am petrified to use!!! Dont know if any one else cannot use anything down there? shower gel, scented sanitary towels, creams etc. she also prescibed me oestrogen, has anyone else tried it?
I also now have hypertonic pelvic floor muscles due to always being in pain which is playing up today!!
Thank you to everyone who has shared their story. At least we know we are not alone! x
Hi Donna, I appreciate that some women can suffer from vulvodynia on and off for many years but there are many circumstances where, if you can find and eliminate the root cause and become pain free then you can consider yourself cured. If you read through this discussion you will find some instances of this. For example nerve entrapment, tight pelvic floor muscles, hormones (being on the contraceptive pill or perimenopause), infection, food allergies. There is also a psychosomatic element to it, so if you think you will never get better, you won't. Positive thinking can be a crucial factor for some women.
Don't be scared to try lidocaine . i could not get through the day without it . i need it 3 times a day and its a lifesaver . I put a pea sized blob on cotton wool that stays in place held in by under wear . I am now also on OESTROGEN .
I went privately. GPs cannot really help. THe hypertonic pelvic floor muscles will be contributing to the pain. You need to see a physio who specialises in pelvic floor issues. The lidocaine cream stung me and made me worse. I am fine with oestrogen cream, but I use that now for vaginal atrophy due to menopause - it improves moisturisation and the elasticity of the skin - I am not sure it will help the nerves. What else are you doing? Amitriptyline? Acupuncture? Saginil gel? Manual densensitisation?
I was seeing a gynae physio but felt like i was getting no where! On Amitriptyline. need to try accupuncture. Is there any specific steps to follow for desensitisation? feel i am doing it wrong!
Thats why I am terrified to try the Lidnocaine just because I know how I react to anything down there!
I have gone down the private physio route after years of nothing working. It hasn't cured me but it has really helped and i now have stretches i can use to relieve my symptoms, i cant afford to go regularly but go every few months . I take gabapentin too. Apparently the field of vulval pain and dermatology is ever growing, i have just been referred to a new dermatology vulval pain clinic at my local hospital. it's worth ringing up to find out if there is a specialist before asking for a referral as your gp probably won't know. I found saginel aggravated my symptoms, i also found the prescription lidocain really burned, but i have found that an over the counter cream that vagisil do which is only £2.50 and has a tiny bit of lidocaine in it, is really soothing. Yes organic lubricant and cetraben cream to wash with also help. i think hormones and stress affect my symptoms. i feel like i might never be totally free from discomfort but am going to keep trying!!
thanks for that Donna, will look up the group. i've had some soreness since childhood and don't think i will find a total cure, but do want to keep truing things which may help!
i find that the lidocaine initally stings but once couple minutes have passed the stinging subsides . I'm going to take your advice and try vagisil.
i wouldnt normally touch vagisil or those feminine hygiene products with a barge pole but i was in home bargains one day, think my kids were browsing the sweets or similar and generally taking a VERY long time! my symptoms were really bad that day, i spotted some vagisil cream and the description on the tube just described what i was feeling so thought i'd give it a go!! and it does help for me so long as i spread it thinly, hopefully it might be helpful for you too. seems to be so different what works for different people x
Please all be very careful with lidocaine. My GP told me it is not for long term use. You can become hypersensitive to it.
I did not find gynaechologists to be helpful. The big turning point was when I saw a consultant dermatologist who specialises in vulva pain.
Thanks Rachel ive bought a tube so going to give it a go . I have days when my symptoms are bearable and others when the burning is awful . I also find ibuprofen every 4 hours helps .
yes i rememver you saying that, i'm hopeful seeing someone with a specialist interest in vulval pain will be a turning point for me too, its certainly been good to see a physio with specialist knowledge. Think because there are no visible symptoms it is easy to feel fraudulent or feel like you arent being taken seriously.
What does of ami are you on? I believe that is was acupuncture that got rid of my pain completely - after each session I felt noticeably better. I had medical / western acupuncture. The key to manual desensitisation is not to rush it and build up very slowly to retrain the nerves to register touch as touch and not pain. Start with just one or two gentle, light strokes with a finger on the affected area once a day. You should do enough not to cause lasting pain afterwards - if you do, cut back. It takes a bit of practice to get it right - you have to listen to your body.
vulvodynia can be a constant pain or provoked by touch. I had both but some women have one or the other.
I am pain free now, have been for 4 years. When I was in pain lidocaine sting me and I waited to see if it would subside but the stinging got worse and turned into severe burning.
I am also now pain free, plus off all medication too. I am hoping it never returns but should it rear its ugly head agsin, i wont panic like before as I know i can beat it again. I class myself as cured. Its a bit like the common cold, you get cured of that eventually, but it can also occur again. Any illness can reoccur but it doesnt mean you arent cured. I swear by Nortyptiline and also the acupuncture helped too. But i believe stress is the worst thing for vulvadynia, mine only got better once i took away the stress and panic and began to believe it could be cured. The more stressed i became, the worse the pain got. I started doing a Mindfulness relaxation Cd every day which helped loads and also yoga too.
I also did mindfulness. Stress is certainly a contributory factor. Believing you will not get better (by reading all the bad news stories on the internet) can contribute to that stress and reduce motivation to pursue a 'cure'. I tell everyone who asks for my advice not to read any of that stuff. It's difficult because, while forums can be a source of mutual support and advice, there are also people on there saying that they have had vulvodynia for many years. My consultant dermatologist also told me not to read that stuff. I have a lot of problems advising women on how to become pain free when they constantly ask me 'but what if I don't get better, what if i gave this for the rest if my life?'. I just say that such negative thoughts will not help them to become better and that it is possible to be pain free - people like you and I are proof of that!