burning vulva- only when walking

[mia2201]

hello, I was wondering whether any of you experienced a smiliar issue.
I wake up happy with no itch and happily go about my day but when i walk for more than 10 minutes the enterance to my vagina and smaller labia starts to itch/burn and feel a bit dry. My discharge is completely normal, had been tested for bacteria and fungi as well as all hormones and sugar levels. it's all in check. Been examined by my gp and my skin looks healthy. Got referred to a gyneacologist but this is taking ages and I've been feeling the sensation for over two months. Tried all sorts of steroid creams, taking probiotics and completely switched my hygiene routine to maintain healthy balance down there. Why could it only bother me when I walk? please let me know if you've had smilar issues. I reckon the doctor will need to take some skin biopsies to investigate but has anyone got any other recommendations? thanks ladies- don't we have all the fun?!

ahh and i switched to cheeky panda toilet paper and organic sanitary pads. I think that's it, as you can tell I really have been battling the condition....

I think I've found my tribe! Have had this for years now. Going to read all the posts now......

I apologise for not answering your question OP. I'm glad you are on the mend.

hello the ladylovescupcakes and sorry you've been suffering too! welcome to my mega-thread, I've just had three worse days and I'm a bit disheartened. I have dropped amitriptyline to 20mg and I think that's what made the difference, ugh....I'd like to get pregant this year so thought maybe I could drop the dose. Will speak to my GP about it this week to see what he thinks. And thank you for your good-wishes Northernsoullover :)

@mia2201 and others...

It sounds a bit like what I have. I had burning vulva sensation with all tests coming back negative and everything looking fine. Twice. I'm calling it systemic contact dermatitis.

First time it was a new allergy/sensitivity to lots of ingredients in cleaning products - shampoo, conditioner, shower gel, washing up liquid, moisturisers and canesten cream. I cut them all out - now I use olive oil soap from Etsy or Holland and Barrett (no perfumes or extras). No other products anywhere on body. That fixed it.

Then it came back! It turned out to be another new sensitivity/allergy to washing detergent. Now I use just savvy green with mega rinsing and no-one uses anything else in the washing machine. Fixed again.

Thoughts
You don't need to be putting something on an area for that area to react.
It can take a few washes to get residues of you/clothes.
Water only on outside of vulva. Nothing on inside. Vaginas are self-cleaning..
Burning vulva is horrific. I hope you're feeling ok.

Hello ladies, I've been suffering from what I believe to be vulvadynia (according to Google and a letter from my go to the gyno dept - can't see anyone yet). I took 3 courses of antibiotics for a water infection and inbetween these courses was taking oral thrush caps/pessarues/cream for a bad case of thrush. All felt better 4 2 weeks then thrush came back wirh anger so back to pessaries/cream and oral tablets. I'm now struggling mentally as well as bodily in the sense that my vulva and clitoris on one side only, burns and feels v sore.
I'm ok in am but by lunch/tea time it's bad. I'm all clear of infections now. 1st started beginning fab 2020. I've been on Pregabalin which I found awful, thought it would help my anxiety that I've developed throughout this horrendous journey, stopped taking that 2 weeks ago. Dr's now prescribed amitrripline. Only on 10mg at moment. Please Mia2201 can you let me know how you are doing, I followed this blog from another one you were on.
I'm 48 and using estrogen cream inside as dr's think I now in perimenapause and the cream would help. Been using the cream for 3 month, i don't feel any better.
. I remember using the caneston cream one time and my vulva and clitoris really really stung! I'm wondering whether it's nerve irritation or skin irritation?.
Thank you for any advice and an update on how you are. Fingered crossed your feeling better 😁😁

hello Chalky! welcome to the thread. First of all, I'm so sorry you're going through this. It's very soul-destroying. Secondly, great piece of news- amitryptoline got rid of my pain after trying everything else. Keep going, don't give up. The thing with amitryptyline is that it takes a few good weeks to kick in. 10mg is a low dose, are you allowed to go up 10mg per week. I felt relief and stayed at 30mg for about a month and the pain was virtually gone. Sweet relief indeed. I'm working down now as planning on getting pregnant this year and currently on 20mg and the pain hasn't returned yet. Will see but you're at the right path, I hope I cheered you up. P.S. my doctor said I could go up to 40mg and I didn't have to :) good luck, keeping my fingers crossed.Also my anxiety disolved and I was so stressed I was vomiting my meals- please remember what you're going through will go away eventually, it's so hard to believe it when you're in the middle of this bloody condition but most people find substantial relief with ami.

Mia2201
Thank you so much for replying to me, I could nearly cry! Yes you have cheered me up! 😗
It's been a really bad day today, I was ok in the am, little sore but then I went for a wee and my clitoris is on fire which is triggering pains in my pubic area and one side of vulva. I can't take my mind off it. Unlike yourselves I can walk and that doesn't cause any worsening symptoms, nor does sitting, wouldn't know about sex as haven't had that for months.
I can up my dose in 3 days said Dr. I was told I should feel better in 7 to 10 days. I didn't know what it took that long to get in my system. Did you gradually feel better or nothing really till the 4 weeks? How long did you stay on the 30 dose before you started to reduce it?
I do hope you continue to feel back to normal and painfree.
I've watched many utube vids and they all do say 90% people will recover, that in itself are certsinly great odds but I'm in such a low mood now with this that only actual people who have suffered, and are now pain free again seem to make me feel there's hope!
Thank you so much for replying. Fingers crossed for trying for a baby and continued pain free life. I'll so look forward to hearing from you 😁😁😁

Hi cheeryandmerry, i use nonbio liq wash then i boil my pants in a big pan and rise with loads of cold water! I'm walking around at home wirh big baggy Pjs on. My burning just starts at anytime of day for any reason. Onky on the left hand side though where the thrush was realky and where I felt sore whilst I had the thrush. Nothing at the right hand side.
I've read that nerves can hurt more when they are healing? Maybe I have nerve and sign irritation. Is used aboyt 4 pessaries and 9 oral capsules altogether plus 2 x tubes of caneston cream, 2 courses antibiotics and 1 course penicillin.
😣😣😣😣

Hi all can I join please?! I read this thread a while back and couldn't believe how accurate it was to what I was experiencing, but then mine seemed to clear up and is now back.

I don't have pain as such...I had my baby 8 months ago and since shortly after his birth I have had an irritated, tingly feeling on and off on one side of my outer labia. It is almost like a sensitivity. It is very distracting and causes me a some anxiety. I am constantly checking to see if I can see anything. I can't see anything there causing it at all, and it doesn't sting when I wee or itch or anything. It doesn't wake me up or bother me at night and when I wake up it feels like it has gone but as the day goes on it gets worse.

As well as this I have had intermittent very localised sore areas in other places which do look red, but which disappear after a day or so. I don't know whether this is connected or not.

I have tried thrush cream which feels like it relieves it a little but it doesn't cure it. I have also had a course of gel for bv which had a similar effect. I used Hydromol to wash and sometimes put some on and I do feel like it relieves it a little but never completely. I have just started on steroid cream.

I can't get to the gp for any tests at the moment but I will when I can and have been in phone contact for my various treatments.

I wonder if a lot of us are suffering from the same thing and are just feeling or describing it slightly differently? I have also started to wonder how much or a psychological element there is. For example how much notice would I pay to an irritated area on another less intimate part of my body?

Hope we all find our answers

hello Namechange! Welcome to the club :) sorry to hear you're suffering too. I went through a similar phase of looking every day to see whether there's any redness or irritation that could be seen. What did help was realising that after a night sleep it's all back to normal pink whereas if you look after sitting for a long time or a day of being on your feet a vulva looks so much darker- it took me a while to figure out it's just normal blood flow. It was anxiety-inducing to see it looking reddish and not pink. I think there's a psychological element to it and I also have another area that can be painful but very occasionally (it's the skin under my boob with a mole which has been checked by a dermatologist). I notice it when I'm stressed. Bodies are so weird! I'm still on 20mg of amitryptiline this week and so far weaning off been ok, fingers crossed I can go lower and still be pain-free. The best way to describe mine is sandpapery-burning, it's like I have some friction down there but it came out of nowhere and I didn't put on weight or anything so I think it's nerves in the skin. Keep us posted! x

Hi Mia, I'm glad to hear your still on 20mg and have no signs of pain still. So you think being anxious, upset and fearful made your symptoms worse? I've had a really bad 2 days with the burning and my fear. I think one feeds the other. I'm still on the amitriptyline but I can't say I feel any relieve, it gas onky been 4 days now. My pain just comes and goes, there's no ryhme nor reason to it. Did u on My get the sunburned feeling when you walked 10 mins plus? No pain through out the day if you hadn't been walking about?
Has your specialist said that a lot of people do recovery from this? I can't see anyone for weeks/months.
I appreciate your time in answering xxx

Sorry ! In English
Did you only get the sunburned feeling on walking! And
DO you think that anxiety makes the pain worse in your case? Xxx

Thanks, it's not the best club to be in is it! I have had the sandpapery feeling at times too but I've found the feeling changes at different times. The tingling is the most constant but at times I have also felt there are tiny cuts down there but on looking there is nothing there. I've also felt localised areas of burning and a horrible raw chaffed feeling - this is more so when I've been walking. Like you, the areas aren't particularly sore to touch, other than a little sensitive maybe.

I have been for a couple of walks in the past few days and oh my goodness the burning/chaffing was awful. Before I went out today I slathered on a load of hydromol and it made a huge difference. This tells me that for me at least, it is a skin issue of some kind despite me not being able to see anything.

I'm trying hard not to worry too much because at the moment there is no chance of getting to a gp and I think the constant worrying makes it worse. I haven't been able to have any swabs yet which is making my mind race a little.

Hey Chalky, I do think anxiety amplifies the pain -when I was at my worst I would sit on the sofa all weekend and avoid activity and would have a pain free couple of days. There is something about walking and tight jeans that provokes the nerves in a certain way. On the other hand no sensation on touch/sex/tampons. So bizzare! I read that when you suffer from a chronic pain worrying is like adding fuel to the fire. That was by a respectable gynecologist (Vagina Bible by Jen Gunter). I'd say maybe it's too early for you to feel the effects of amitryptyline. Also, it all depends what your vulvodynia is caused by. I never got properly diagnosed as doctors mostly shrug their shoulders saying nothing to see -here's another potion to try. Maybe you suffer from pelvic floor muscle dysfunction? some women have hypertonic tension sort of thing and that causes the burning. Are you on instagram? Jillkrapmd is a great doctor to follow on there. Keep digging and hoping, it's awful but most women find relief. Also you could watch some pelvic floor muscle release videos on Youtube. Let's keep chatting, it helps knowing you're not alone!

oh, Namechange posted too! Ugh the after walk feeling is so bad, isn't it? Honestly, the first time I went on a walk when the pain was going away I couldn't believe it! It's the best feeling. Have you tried talking to your doctor on the phone? maybe they will let you come and do self swab- I read on a different forum that they let people in on a one to one basis. Please don't feel like you bother them for no reason, this pandemic might be going on for god knows how long and your mental health is important. When they excluded any possible reasons for my symptoms and I came to a conclusion it is nerve pain I felt so relieved. It's an awful condition but first of all I knew my health wasn't in an immediate danger and secondly they prescribed me amitryptoline which works for nerve pain. That way I don't think of it every single minute of every waking day. My head was in such a bad place for months.... please seek help, this worrying is absolutely exhuasting! thinking of you both x

Thanks mia it is so kind of you to help. I have spoken to my gp on the phone and she did suggest it might be a possibility to go in but it is a scary prospect especially the thought of bringing something back with having a small baby so I am going to try to hold out for a little bit longer. She has prescribed me some steroid cream to try for a week...i'm a couple of days in and on on the fence about whether it is helping. It's just a rubbish time for all this really, and I'm not even past the getting swabbed stage so it's hard not to panic. I did have a smear test right before lockdown though and the nurse didn't mention seeing anything untoward which i'm sure she would have if there was anything glaringly obvious to see (I wasn't having any problems at the time).

Nerve damage is also a strong possibility for me as I had a tear when I gave birth which I believe can cause burning symptoms. I'm glad to hear you are much better and hopefully i'll be there too one day soon

Hi Mia, nice to hear back from you and I'm glad you sound very positive! Hi Namechange too!
I'm definately sure that my burning was caused from 2 bad bouts of thrush and using lots of cream/pessaries and oral capsules. I have no pain with walking/sex/sitting/tampon use or washing/touching vulva. The burn just starts and stops whenever it wants, it's unprovoked. As soon as it starts I can feel myself tensing and then the fear just washes over me. I'm sure it's nerve irritation like yours and possibly a little skin irritation too, when I wee it sometimes really stings the skin near my clitoris unless I put some protective cream around my bits! 😣😣.
I do believe that worry ECT adds alot of fuel to the fire, I can't wait till these tablets kick in! I have watched a few pelvic floor vids yes, and I started to do some today. Stress can also cause vulvadynia or can make symptoms worse.
Could your symptoms be caused from all the creams and antibiotics you took right at the beginning of your journey?
My dr's says that the nerves are just irritated and they need to just settle down. I have had swabs and bloods done so ruling out again, any infections which I'm sure I don't have as the burning just on the outside. You must go and get looked at "Namechange" as you'll feel better once that's been taken care of!
In banning myself off googling as you can just get carried away with frightening yourselves to dealth reading all this stuff! I know this isn't a life ending problem, but it would be nice to hear that there will be an end to this hypersensitive nerve irritation. I suppose it's down to time, pain management and not stressing! Our bodies are great at healing and nerves can heal just like the rest of us, my problem is that I want it over with yesterday 🤣🤣.
So Mia, your still feeling 100% better on 20mg amitriptyline but hoping to reduce to 10% soon? Did you say you've seen a gyno? If so, do they say that it's quite common that vulvadynia symptoms do eventually go away completely???
We were in lock down when mine all blow up so I've just managed to see a nurse twice for swabs.
Yes let's keep talking as it helps! 😊😊

Hello Namechange- I wouldn't know how worrying it is to risk bringing anything to your precious baby but I'm positive GP's practice must be so safe to visit. It's most likely one in, one out, and the staff working in full PPE and you can wear gloves and a mask too. I'd go and check, not because I think they'll find something but because I think they'll rule out infection (infection would be either caused by bacteria and my GP said bacterial infections do not cause burning sensation, or fungal and that is so characteristic with the thick discharge I don't think you would have any doubts). If they do bloods they can check for estrogen levels and if you just had a baby maybe you need a cream containing the hormone. If not then pain management could be the way forward. Or maybe the steroid cream will help, might be too early to tell. Anyway I'd speak to your surgery and voice concerns - say you are equally apprehensive about coming in but also panicked about health. They should reassure you and hopefully explain what safety measures there are in place to safeguard everyone's health when visiting the doctors. Good luck, sorry if I sound like I-know-it-all or a medical professional- not my intention but I'd love to nudge you to get the help you need and deserve. Good luck x

It sounded to be like vestibulitis, had a million creams some of which worked for a time but not long term, I had amitriptyline too which did help but had side effects for me - a doctor suggested bathing in Oilatum Plus bath stuff which I did daily for a few weeks and the relief! It was amazing. This was years ago and I still keep buying Oilatum and use it every couple of months although the feeling has largely gone. The worst thing I was given was an actual numbing gel, the idea being I could use this and then it wouldn't hurt to have sex (it wouldn't, but it wouldn't feel anything positive either)
I'm very pleased for you Op

Not sure if it makes any difference but I was prescribed Dermerol cream liquid to gently wash, it's in a pump dispenser.
It could be similar to something you're already using from the gp, but could be worth trying.

Hello Chalky! Yes I'm feeling very positive, I'm on day 6 of taking 20mg and will drop to 15mg on Monday. Phasing it out very gradually (bought a pill cutter to do the half doses). Still feeling absolutely fine! Went shopping for an hour, even wearing soft jeans and came back happy. I've heard the majority of women suffering from vulvodynia went through a lot of thrush or had some trauma down there. You both seem like very typical cases. I think mine started with a lot of stress at work, wearing stupidly tight jeans and one day if just felt like UTI, then antibiotics, tests, stress of waiting for a referral for months, not being believed by femal GP's saying nothing to be seen, crossing their arms and shrugging their shoulders. I was thinking the worst and spiralling in my head not getting any answers. Yes, I was seen by two Gynecologists but they didn't even mention nerve pain -they both said use ointments to wash with and use steroid cream. It was one of the GP's who prescribed amitryptyline after I started crying in my chair saying I'm feeling depressed and desperate. She said maybe take some of this- wide ranging nerve pain painkiller, play with the dose and see how you get on. I was a bit nervous so I took only 10mg for weeks, then upped to 20mg and didn't see any difference but because the lockdown started I couldn't get any more so I stayed at 20 thinking this is not working but it helped my mental health and I finally stopped crying every day... After weeks and weeks got through to a male GP and he said I'll give you loads more work your dose up to 40. So I jumped to 30mg and after probably 3 weeks I was like hallelujah this is my savior! Never had to increase it to 40 :) I'll be updating you to tell if the pain returns. I'm hoping not! My back up plan is to ask my gp for licodane which is the anesthetic cream, lots of women say it works. Maybe worth considering in your case too? Stay hopeful and patient and smile at your reflection in the mirror- don't fight it, manage it (vulvodynia, expectations). Always happy to help and cheer you up! x

When mine was at its worst it was pre google and I felt so alone with it, I'm glad people have more support now.
I remember Charlotte on SATC getting amitriptyline for a "sad vagina" and almost cheering

This is a very interesting thread. I suffered itching/occasional burning for a couple of years, which did eventually go, but my vulva is still quite sensitive.
It's miserable being uncomfortable or in pain in that area, isn't it?
I hope you all find solutions too, and thank you for starting and updating the thread @mia2201.

Aww thanks to all of you! I always say the generosity of women is something that should be celebrated. It can be such a lonely condition but as you can tell I managed to banish all the stigma and taboo and I'm happy to talk to anyone you may be interested or need helping. Vulva is just a body part, and what a special one ;) I'm using zerobase for washing, it's nice and greasy and hydramol for moisturising -don't feel particularly dry but may as well! I'm off to have a glass of wine to cheer your good health x