Last July, after my first ever yeast infection, I think a few wires got crossed, and I've had chronic itching ever since. After seeing about 15 doctors, it's been determined this is definitely a case of vulvodynia (as nothing else could be found, and I do have a history of lower back fractures). It's been determined the vulvodynia has been caused by lack or hormones and a pre-existing tailbone injury. The majority of my searches have documented experiences of pain, but I'm wondering if anyone out there experiences their "pain" as non-stop itching. I've had every test in the book done (including suspected lyme), and everythign is negative. I am working with a great team of pelvic floor therapists, and monitoring hormone levels (testosterone and estrogen were in the garbage), but have you found anything else that has helped? I also have a tiny tarlov cyst that was found on my spinal cord. Currently that has been ruled out as causing my symptoms.
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Hi, it could be hormonal, maybe you should get a gynaecologist to run a series of hormone checks and see if hormone replacement or what ever is advised by the Gynaecologist. All the best. XX
Hi there, just wondering if you have seen a dermatologist? In case it is a skin condition?
I was diagnosed with vulvodynia in Nov 15 a year after my second child was born. I had countless bouts of thrush and treatment while I was pregnant but the itchy irritated feeling never went away but only on the left side, even though swabs were clear I also have a lot of pain that side where I'd had an episiotomy with my first child and then tore with my second. It drove me insane. I was prescribed amytriptilne, pregablin and lidocaine gel but they didn't help me. I'd seen something called Multigyn (previously biofem) Actigel keep being mentioned while googling in desperation and for a tenner I thought it be worth a try. I got some before Christmas and I'm so pleased I did. I was using it on and off for about of month and the itchy sore feeling has gone. If I get a feeling like its starting again I just use the gel for a couple of days. The horrible sore itching is no longer a symptom. I've have just been diagnosed with endometriosis on my ovaries and bowel which I think causes my other problems and I did have 2 polyps removed at the time. Whether that contributed to the itchy sore problems I don't know but the gel definitely helped me. Sorry you are suffering. X
I used to have itching when coming off amitriptyline ...I used vagisil cream, it has zinc oxide and lidocaine 2% ..saved my life... it's most likely the nerves causing itchiness..it went away quickly for me
I also experience horrible unbearable itching in my vagina as a symptom of vulvodynia. I haven't figured out how to fix it. It is the most maddening torture. You have my deepest empathy and you are not going through this alone. I know how this feels. I am 41. The only things that have helped me so far are a concoction made for me by a compounding pharmacy, tons of anti-inflammatories, and icing my privates. I would take more sitz baths but I'm recovering from a biopsy right now. I am trying a low oxalate diet and I have been doing it for about five days. I haven't noticed a difference yet, but I need to put in more time. I definitely understand what you're going through. The only relief I get from the itching is when I'm asleep. And it takes a heck of a lot of amitryptiline and gabapentin to make sleep happen.
I thought too I had a yeast infection about five weeks ago, But it wasn't that. Then I was prescribed a topical steroid, which worked for a week and then stopped. My OB/GYN thought I looked just fine down there, another one could see irritation below the surface in the microscope. She thinks that the itching is neuropathic. I hate to say it, but I agree.
I "hear" ya. I've had chronic vulvar itching off and on for over 20 years. I hate it. I've tried every cream and oral meds like gabapentin. I recently got a steroid shot directly into my vulva nerve. It didn't help. Next I am going to get a botox shot in my vagina. It is a day surgery procedure. This has been maddening to say the least. I have hope with the botox even though it scares me. I have read and heard directly of relief. A ob/gyn in the pelvic pain department is doing it. I'll let you know.
It took me years to understand why I experience itching and not pain. They are related. The nerves in the vulva area are sensory nerves and itching can be one of the sensations when the nerves are over firing. The goal is to get the nerves to calm down. I do yoga, meditate, got divorced from a stressful relationship but need more medical intervention unfortunately.
Just curious now that some time has past how things are going. I’ve been dealing with the symptom of itching for over a 10 years now. Thankfully it’s not always there but it’s never gone away. When I first tried to go to a doctor I felt like no one believed me and kept trying to treat me for yeast infections. I’ve since moved and have yet to bring it up to my new practitioner for fear of having to go through that whole process again. I suppose I should just get it over with and maybe it’s more recognized now and I won’t have as hard a time justifying what it is. It’s such a frustrating thing to deal with. I do feel like for me it flairs up more when I’ve been more dehydrated and haven’t kept up with drinking as much water as I should, but I haven’t found anything that really helps otherwise.
I know it has been sometime since this was posted,but I just happened to come across it. I was diagnosed with vulvodyina when I was just 23 after going from doctor to doctor then dermatologist then to a clinic that
specializes in vulva issues who then got me to my gynecologist who not only diagnosed me with vulvodynia,but also ehlers danlos syndrome which had been causing the issue to begin with. I was told that I was experiencing jock itch,a fungal infection,also that I had lichen sclerosus before being sent to the right doctor who helped me figure out what was going on with me. Unfortunately I have a prolapsed uterus, a prolapsed bladder, and a prolapsed rectum which is setting on my nerves causing my vulvodynia. All this is due to my ehlers danlos syndrome which also has caused alot more health issues,but that is another story and I am here to tell you all that since being diagnosed with vulvodynia I have delt with itching and burning with no cure. I have tried multiple medicines as well as creams but nothing has worked and it has been 5 years since being diagnosed so the only relief I have found has been soaking in baking soda, epson salt,and as crazy as it sounds tea tree oil. I also sleep with no underwear as well as wear no underwear if I'm sitting around the house for most of the day,this has been the only relief I have found and it is miserable. I have come to realize mine tends to flare up more in summer time and unfortunately we are in the middle of summer so I have been soaking alot here lately trying to relieve the itching and burning,but other then that I have found nothing else that helps. I am praying and hoping that one day something is figured out for all of us suffering with this condition because no one knows more then us how miserable and unbearable it can be.
I'm so glad I've found this post as I too have been searching for cases where vulvodynia seems to be just itchiness and not stabbing pain like a lot of other women seem to experience. I'm 30 years old and last December (2017) I started to experience itching. It was initially treated as a UTI then thrush then bacterial vaginosis (all of which I have experienced previously) but this felt slightly different and it wasn't clearing up. I felt like I had daily intermittent sensations down below, sometimes they would last a few seconds and sometimes longer. In April I was prescribed amitriptyline but I didn't feel this made much difference. I was changed onto pregablin and then gabapentin (which I still take). Again, I don't feel like this medication makes any difference. Over the months I've tried various creams - vagisil, steroid, canesten, e45. Some sooth the itch slightly but none of them have relieved it permanently. I've had probably 20 GP attendances in 2018 about this. All of my swabs and examinations come back normal. I've been to see a registrar at hospital who also said everything looked normal down below. They've now referred me for cbt and physiotherapy(!?) And I'm due to gave a pelvic ultrasound in a couple of weeks (I had a laparoscopy a few years ago where small cysts were found but no endometriosis so they are checking cysts haven't grown etc). I have had private cbt over the summer anyway... this hasn't helped the issue! I've told my close friends and my partner about my condition but they just dont understand what it's like to have an intermittent daily itch down below. It's wearing and debilitating. I only wear cotton underwear and don't use perfumed products. I have a desk job so I do sit all day which can't be helped but sometimes this doesn't overly affect me and sometimes it does. A couple of weeks ago I was adamant the docs had got it wrong because I couldn't find itchiness stories; they were all about pain. I self medicated canesten thrush tablet and cream hoping and praying it was thrush that hadnt been picked up on. The treatment did help the itching a little (maybe I did have it alongside out acquired it in the last 10 months) but all my symptoms have returned. I'm suffering itching a lot of the day. Sometimes I physically have to scratch it you relieve it. Sometimes I have to give it a good scratch with toilet paper too. It's just so depressing having a fight with your vagina every day!! I feel so low. My sex life has drastically reduced; I struggle to find pleasure in sexual activities; I find it more of an itch relief!! I just want the vulvodynia to stop! I cry myself to sleep some nights because I just can't see any light at the end of the tunnel. Stories I read are of women who have suffered this for some 10 years. I've suffered for a mere 10 months in comparison. I'm going to try the Actigel a lady mentioned above but I don't hold out much hope at this stage! I want to come off gabapentin... i find it has made me put on 1 stone in 5 months and I feel low, spaced out and mentally numb. I'm getting married next year and want to start trying for children after. Any tips would be appreciated on how to seek treat this horrible vulvodynia!
Have you got this? I will mention to my doc. I do feel its to do with the nerves. I get sensations around the vagina entrance, near urethra and perineum areas
No, but it is known that tarlov cyst since it is in the lower end spine it pressures on the pudenal nerves and the nerves that innervate the vagina which causes bothersome.
They could also grow so like I suggest you to do another mri .
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