Itchy, raw, vulva, nothing seems to

Hi Lisa. Do you find certain things make it worse, like when you get stress, walk and stand up? And does it get better when you lie down but worse in the evening ? I ask because I had the same symptoms and it ended up being related to a pinched nerve in my back that runs through my pelvis. Its taken me ages to work out that when I have a dull back ache I will be sore down there. I've had physio and my situation has improved massively although I still have the odd bad day. My advice is that creams just don't help. The more you mess around down there the redder and more irritated it becomes.

Of course it could be any number of things, but keep on pushing those doctors and don't let them fob you off. X

Thank you so much for your reply appreciate so much. Finally someone who understands . I do have a lot of back issues I am now doing pelvic health physio and I will talk to my chiropractor tomorrow . So thankful to talk to someone

Before you go google pudenal neuralgia and vulvodynia. Read what it's all about. I don't have this as I would be in agony but there is definitely some area of my lower back tat tightens around these nerves. The result is that I had what I can only describe as a cheese grater in my knickers! It would come and go and occasionally I'd get a morning where I thought it had gone but then it would come back out of no where. It really got me down. If you can't get any relief from a physio, also go to the doctor and ask about amytriptyline (I'm assuming you are in the U.K. as this is what it's called over here). This medication will basically dull the nerve feedback for anyone with vulvodynia. It worked for me but I had some palpitations on it so had to come off.

I had to see 7 different doctors to get diagnosed with vulvodynia and even then it was me who worked out that it was back related. If you persist you will get your life back. At one point I was going to work with long skirts an no knickers! Now I can wear roughly what I want. That's not to say it has gone as if I strain my back it comes back but it is manageable and doesn't ruin my life. Good luck and best wishes

I wonder if a neorologist could help some of us?

Feeling very anxious , was afraid to talk to chiropractor just not sure about vulvodynia , main symptoms I have red labia Majoria and pubic hair prickly , and some days heat feeling but not burning . I have a physio who is trained in woman's health I was seeing her for weak bladder. I will go back to her for advice .Why does the reddness not go away . It's the heat feeling I hate . Just so tired of it all. No one helps. 

I know its so frustrating and unnerveing

.I never get any docs to agree on anything. I have found help with sitz baths for 15 min useing lukewarm water.i also have tryed hydrocortisone 1 percent.Vitamin e oil..open capsule and use the e inside the capsule also a and d ointment my redness has gone almost away,but still dealing with irritation,burning at times etc.

Do u use the vitamin e capsule on the inside, and the A&D on the external labia for the redness? Appreciate u getting back to me so quickly with my last post. 

I alternate the 3 things daily.sometimes a few days in a rowe i use the same thing.I get regular vitamin e capsules 400 miligrams then pierce them with a pin on the seam.sqeeze out the vitamin e onto my finger and apply externally to the vulva and entrance to the vagina.i usually use this before bed as its kind of sticky.I use the Aand D in the daytime after a shower and before i apply underwear.Usually only where i feel it needs it.The hydrocortison 1 percent is over the counter and my gynocologist is comfortable in me useing it daily if i need it.I used to itch alot..hardly ever itch now.The sitz bath is taken on a basin that you can get from a medical supple store that fits on top of your toilet.i soak and then lay down and air dry about fifteen minutes.only white cotton underwear.loose comfortable pants i dab dry with toilet paper that is wet with water after urination.all this does help,but i am still far from being back to normal I now am thinking about possibly useing estrogen.Also dont use soap on the vulva clear water is said to be enough to keep it clean.at least thats what ive read.

Any help for me please

I wonder if a person should see a neurologist for this?

Hi lisa, I'm hoping at this point in time you found a cure and are feeling better.  Would you please update us on how you are feeling and what, if anything helped you to feel better?

Hi Liz do you have Pudendal Neuralgia?

Hi, sorry to hear that yet another person is suffering with such horrible problems. At one point a doctor booked me in for hormone tests but then another doctor told me not to bother as I don't need them.! I'm 39 so it was unlikely to be the menopause. Also it wouldn't really explain how one hour I can be fine and the next it feels like I've put a cheese grater in my knickers! For me it is very much my back. If it does turn out to be the same for you - a word of caution. Be patient! I needed several weeks of work on my back before I saw much improvement. A lot of my lower back pains is from years of being up tight and that explains why I always suffer more discomfort when I'm stressed ( I instantly tighten up). I hope you get it sorted!

Whats the diagnosis..i have back issues .herniated disc and some bulging.i know i have atrophy..but i wonder if my back contributes to things.

Thank you for getting back to me, I'm 36 and annoyingly my consultant hasn't even tested my hormones even though I asked so it's all guess work...I'm the same I had a great day Monday with hardly any pain then it all comes back. Interestingly when I spoke to the chiropractor she seemed really informed on vulvodynia and she made a connection that I had a bad fall in my childhood which resulted in a few broken bones and then after that I suffered from cystitis when I was younger constantly...she said it could all be connected that I misaligned my pelvis at a young age which puts pressure on nerves etc....I've been told I have a tilted pelvis before and strangely when i went to get an epidural during child birth they told me i had a slight curve in my spine...I get back ache but just put it all down to being tall and having poor posture...I never would have connected the vulvodynia pain with all of this but I keep reading of people getting relief once they sort back /pelvic problems...fingers crossed, the chiropractor has booked me in for 3 sessions and she said if there's an improvement after 3 weeks then they'll keep going but I've got to give it at least 3 sessions to see an improvement xxx

I think you must be my body double - I too have a wonky back and suffered on an off with a dull ache. I just lived with it until I started with the vulvodynia. It's good to know I am not alone. But good news is I can now wear skinny jeans!

Fingers crossed I'm on the right track...its horrible that it seems to take the enjoyment out if everything...I'm desperate for skinny jeans and wine soon! I've cut out all alcohol..boo!! Just being able for it to not control my life would be a huge blessing xx

I have vaginal atrophy,i now wear loose pants..wine doubles the symptoms for me.I miss being me.sigh

Are symptoms for vulvodynia and atrophy are very similar ? Have you been given an Estrogen cream to help? I've been given some but so far it's not done much for me which is why I'm thinking It's vulvodynia I have rather than atrophy as I've read the estrogen cream really helps atrophy - and apparently applying evening primrose oil down below is meant to help but I haven't tried it yet...I'm hoping the chiropractor has some answers for me friday...if not I'm back to square one xxx

I went through almost exactly the same as you.although i started out with itching.One Gyno thought i had bv,another gyno did test and said no..I was googling everything.I had my anual pelvic which revealed VA.My gyno didnt even mention it at first til i went back continuously.I was very sore,infamed,the itch left.Was told to try a 1 percent hydro cream and do sitz baths.I used to only have the outside issues..so i didnt believe it was atrophy.Things in the last month have ramped up,i now can feel internal irritation.I have to usethe bathroom alot.At times now get uretha irritation,especially after drinking alcohol,so now i can either suffer more and drink or be a nervous wreck 24 seven.How is your anxiety doing.Anyway,I wanted to make sure it wasnt something other than the atrophy causung symptoms so i have not tryed an hrt..can i ask how old you are.i am 58 post menopausal.Thought i was done with female problems..then this.If your gyno thinks its hormonal and you are pre,meno or post meno id have a pelvic exam for the atrophy.I am about to ask for hrt.I dont want to,but I get nothing done every day,and want to have that glass of wine again.I am on an anxiety med,think i will be asking for a dose increase as i think my husband is fed up with me.Would love to hear back from you.So sorry for what you are going through.

By the way i also have a slight curved to my spine so am thinking thats not helping anything

I'm 36 and not going through menopause, my consultant thinks it's hormone related but he is just guessing...They put me back on combined contraceptive pill to try to regulate my hormones which is frustrating as the pill makes me very nauseous so now I have vomiting and nausea on top of everything...I should have been more persistent and asked for a hormone test before going back on the pill but I just thought it would work and was desperate. I'm 6 weeks in on going onto the pill and it's not helped so far, but I know its definately in my system as the contraceptive pill related vomiting started pretty much straight away. Maybe you should try seeing a chiropractor too?? It can't make things worse...I'm not giving up yet on figuring this thing out...I'll try everything I can, I have 2 young children so crying in bed isn't helping me or them. The chiropractor I'm seeing has treated vulvodynia patients before so I'll keep you posted on what she says on Friday...its so upsetting I just clock watch till the time I can put the kids to bed so I can then cry without them seeing me, I so feel your pain. I'm the most optimistic person in the world but this is now starting to wear me down but we gotta keep going and trying new things...For every person that is still suffering there is another person who has become sympton free xxxx

Reading your last post made me feel so sad. We are about the same age and I too have kids. At its worst I was desperate to get them into bed so that I could have a cry. It takes a toll on your marriage too. How's your husband supposed to understand that you've got discomfort down there! For me the worst part was not knowing if it will ever go away and worry that I would have to live like that.

But It will go away! You might not immediately find the answer and when you do it might not have instant results. But a year from now you will look back and remember how sh*t it was and be grateful every time u can get those skinny jeans on.

I am still only on this forum because I completely understand the desperation you feel when you suffer from this. I just want women to know that the doctors need pushing and don't have all the answers. Stick with it and keep your chin up!

Yes please keep me posted.I will keep going to different doc..including a urologisist..will also consider talking to a chiropractor.I will try anything.I literally make myself sick over this.only time i feel comfortable is when im in bed.Hard for you having little kids and not feeling well.I see my general practicioner on friday..hes not always very helpful but maybe he can give me a few ideas.Keep your chin up and remember we are all gong through so much,you arent alone.Hugs

Ah that's really helped! You're right the worry of never getting back to normal is always there at the back of your mind...I've got a consultant appointment in a few weeks and I am not going to leave his office until we have a plan in place of what I can do going forward - he's never mentioned vulvodynia to me so i will speak to him about it and see if the meds for it along with the chiropractor will be more helpful than the constant antibiotics they keep putting me on...I'm determined to have a happy Christmas with a nice new pair of skinny jeans and a glass of champagne! Xxx

So I just got back from chiropractor and I have a tilted pelvis, a curved spine and my coxes is in the wrong position...I'm going to see her again once a week for 2 more weeks so I can then see if my soreness is easing...I really hope it works...she seems pretty confident she can help...but I'll have to wait & see xxx

So I'm back from my 3rd weekly visit to my chiropractor and there have been a huge improvement in my vulvar pain...gone from a 7/8:to a 3 so there's definitely a link between muscle / nerve damage for me, strangely though my back pain has got a lot worse - I tried to wrap a few presents and my back is now in agony but I'd rather that than have unexplained vulvar soreness - I hope you don't mind me asking did your back pain get worse for a while? I understand it will take time...maybe another few months of work I'm guessing as every muscle connected to my pelvic floor really hurts when she presses on them xxx

Ever ask about taking a nerve medication like lyrica or a trycillic antidepresant to dull the pain.

Hiya . My back would sometimes get worse for a while too but the vulva pain would go. I put it down to the fact that I'm kind of getting re aligned and so it's bound to make other muscles unhappy for a bit. It will get better in a few days I'm sure.

It's never been offered to me unfortunately although now I think this is helping I'd like to stay off meds if I can...my consultant just keeps telling me to give it time and things will get back to normal...I've ignored him and gone to see the chiropractor and It's definitely helping...I vets frustrating that we have to figure all this out without any guidance but I wasn't willing to just sit at home and wait xxx

Thanks for responding...yeah I pretty much thought the same...I'll just have to wrap presents slowly over next few weeks ha! Xx

I know i get disallusioned with doctors now days,takes 6 apts to figure out one thing..well meds are always an idea,they make some decent ones for nerve pain.Funny how doctors never think about that when it comes to the vulva and vagina,guess the irritation isnt caused by nerves lol

Hi Nikem2015, I'm hoping at this point in time you found a cure and are feeling better.  Would you please update us on how you are feeling and what, if anything helped you to feel better?

Hi I am 60 years old and just started with this burning raw feeling where you wipe and when I sit it is very uncomfortable . Last month I had the same thing accept some light itching and redness all around outside of vulva . Went to Gyn she said that it wasn't yeast by looking under microscope but gave me diflucan which cleared it all up . Now it has come back they did culture and it was negative said it looks like vaginal atropy but wants to do a vulvar biopsy . Am having just burning pain not really itching . Am really scared am due to go on vacation in a few weeks and I really don't want to deal with this I just want them to find out what it is . Any suggestions will be helpful . I believe recovery time for this biopsy is a few days . Thanks

Had some of the same problems as you and others are describing, but I had a GYN specialist and did some test with some specimens. It turns out I have VIN or Vulva Intraepithly Neoplasia. Chances are you have been exposed to this virus. It's what the girls and boys are getting the HPV virus shots against today. I am 61 and have been post menopausal since my total hysterectomy in 2003 for a bleeding problem . Most people get this from a partner who have been with more than one partner. Most don't even know that they had, like a cold. It comes and goes. Then there are some, like me it stays and can cause cancers. In the vulva or cervix or uterine, it starts out like some of you have described, it has VIN1 VIN2 VIN3 and then cancer. Mine started out at 2 and now is 3, I have had two surgeries on my right vulva lip and have had to remove the bottom half of my outside larger lip. I go back for more testing, if it is still VIN3 more surgeries for me.....

Please keep us posted on any of your findings....