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Women's health

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burning vulva- only when walking

79 replies

mia2201 · 08/02/2020 10:47

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?!

OP posts:
Jonb6 · 08/02/2020 23:02

How old are you op?

NameChange30 · 08/02/2020 23:02

VPS recommends colloidal oatmeal. Also tea bags which sounds weird but my gynaecologist mentioned it once so it must be a thing!

"Bathe the affected area once or twice a day either using compresses of cotton wool soaked in colloidal oatmeal which has previously been dissolved in water and stored in the fridge, or by sitting in a bath with collodial oatmeal product in it made up as specified. If you cannot find colloidal oatmeal, you could try plain oatmeal in the toe of a clean stocking or in a muslin bag: swirl it around in the bath before you get in. You might want to store moistened tea bags in the fridge or freezer and use them as cold compresses twice daily."
www.vulvalpainsociety.org/vps/index.php/advice-and-self-help/general-advice

HoofWankingSpangleCunt · 08/02/2020 23:07

Don't mind me, I'm just here picking up tips, for a friend.

Colloidal oatmeal you Say?

mia2201 · 08/02/2020 23:08

I'm 34 :) pre-children, same partner

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Jonb6 · 08/02/2020 23:21

Were your hormone levels normal? This can be a symptom of menopause.

februaryninth · 09/02/2020 09:00

Had the same when I was younger but was put down to being an ‘outie’ and the skin getting sore because it was irritated but to the point of bleeding and blistering and what have you . Had surgery on the NHS in the end which was life changing but as I understand it ten years on chances would be slim to none of getting that sort of help without for instance, previous cancer treatment or congenital syndrome (I am suspected to have had the former) .

Still have other problems - but the worst was sorted with that op .

Over the years though I had endless input from GP, a vulval skin clinic and gynae though - I was told to wear cotton (non lacy or nylon or fake satin) pants , no thongs, just granny pants .

No talcum powder, bubble bath, femfresh, etc etc - just plain warm water . Obviously wash outside but the inside just water is enough . Even told to wash hair over bath if having a bath . Oatmeal should help or aveeno. You can probably buy Dermol soap substitute too now .

I was advised not to use sudocrem, bepanthen is better , and to use replens if very dry/irritated . Vagisil is quite irritating so would steer clear . I was suggested to use canesten but that made things worse too .

You can get 50/50 emollient but that’s pretty horrible stuff from memory and I wouldn’t use that unless desperate .

You do need to wash underwear in soap of some sort though - you get gentle washing powder I think . Water doesn’t get bacteria out so won’t be helping matters .

mia2201 · 11/03/2020 09:19

I thought I'd post an update- I was seen by two private gyneacologists and they both said there's nothing to see on the skin, absolutely no changes and my only symptom which is burning (as opposed to itching) does not fit any of my suspected diagnosis. It's not VIN, lichen, BV or yeast. I got prescribed steroid creams for 3 months to see if that helps at all. I have another NHS appointment next week and not sure whether to go or not. It isn't vulvodynia either I don't think as it doesn't burn when i touch/wash or sit or have sex it only burns when i walk for over 10 minutes or more which happens every day. It's so bloody mysterious! I wish it went away as I was a keen runner and it's too distracting. I know there's worse things out there and I'm grateful my health is not in danger. Does anyone else experience this?

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Warandpeas · 11/03/2020 09:51

Yes - OP I have exactly the same thing. Mine was a kind of dermatitis caused by overuse of creams and treatments, and also due to being on the progesterone only pill, which I believe can cause vaginal dryness (similar to what happens around menopause). It resolved naturally when I had DC but is now back Sad. I’ve worked out I’m allergic to most sanpro, even the sensitive kind, as it dries everything out down there and creates soreness when I walk etc. It’s also due to hormone levels dropping around my period.

I find ice packs help when it flares up but would echo PP who say to reduce creams etc as you could be having a kickback reaction to that. Plain aqueous cream sometimes helps but often the more I mess around with treatments the worse it feels! Also a runner and wondering what kinds of exercise I can do that don’t involved friction/scissor legs... it’s very frustrating Flowers

mia2201 · 11/03/2020 11:08

Thanks for your message Warandpeas! I'll keep doing what i'm doing then and hope it will go away. Mine started a couple of weeks after I had my implant taken out (which was releasing progestrone only) and I was VERY STRESSED. Mind- body connection is so real! I suppose this is a learning curve. Will try and eliminate sugar and unprocess my diet as much as I can, food is medicine after all. Shall we keep each other updates if we find anything that works? all the best x

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Warandpeas · 11/03/2020 11:12

Oh yes stress is absolutely linked to it and all my flares have happened right before weddings, job interviews etc. I went on a mindfulness course which helped with the over thinking about it, but some days I just accept its there and try to carry on. It’s so hard though as women we have to accept this kind of pain as “having no physical basis” - can you imagine men with burning penises being told it’s in their heads??

Sounds like like your hormones might be out of whack after the coil. Fingers crossed time and letting everything settle down helps - hope you feel less stressed soon.

roses2 · 11/03/2020 11:32

I had this after giving birth to my second. It lasted a few months after he was born and eventually went away (I didn't use any cream or medication). The doctor said it was probably caused dryness.

mia2201 · 11/03/2020 11:53

Thanks ladies- I feel less alone! Don't we have all the fun?! Wishing you good health and happy vulvas! I talk about my vulva like it's an elbow now- shame and taboo smashed to tiny pieces :)

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over50andfab · 11/03/2020 13:03

Oh goodness, where to start...first off, to everyone who's mentioned aqueous cream - this has proven to be an irritant, especially to the vulvovaginal region. Even the vulvodynia link given by a poster upthread extolling its virtues here: www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia#emulsifyingointment
has a link update to this: www.gov.uk/drug-safety-update/aqueous-cream-may-cause-skin-irritation Also see here : www.nhs.uk/news/medication/aqueous-cream-for-eczema-studied/?fbclid=IwAR1dQiSWuyD8Jl7vllAp5XT78eiRsR_wDI-AlwcdjPImnp5LlUedVBdxuEA .

Hydromol or Epaderm ointment are much better options to use (ointment in the tubs are better than the creams which have other additives that can irritate). These can be applied liberally and at any time. Some women who find even water drying to the vulval area (yes, it's a thing!) apply it beforehand or even wash with it.

Next - steroid creams - if taking something prescribed like clobetasol (Dermovate), the ointment is better than cream (less potential irritants, better application). This can be used for inflammation and conditions like Lichen Sclerosis. However, steroids can, if taken over a long period of time, thin the skin and make the problem worse and should be applied very thinly.

Vulval irritation can be due to many things. I have it. Mine was diagnosed at a GUM clinic and is due to vaginal atrophy...full name is urogenital atrophy and dryness is due to the skin thinning due to estrogen loss. Mine is due to age/menopause but some get it after giving birth, (as said above by roses), after hysterectomy, cancer treatment - anything that can affect hormones.

My situation also involved the need to wee all the time - also related (irritation to the urethra etc) - but not picked up on by gynae I was referred to. Not saying your situation is the same OP but if due to loss of estrogen then you can get stuff to help replenish stocks straight to the area - Vagifem pessary to be used internally and Estriol Cream (Ovestin which can be used internally/externally as needed. Hydromol can be used between applications. Also have a look at YES products - water or oil based - can find online or in chemists/some supermarkets. No parabens, glycerine etc that can irritate.

Loo roll - look at something like cheeky Panda. San pro, look at something unperfumed and unbleached like TOTM

HTH

mia2201 · 11/03/2020 13:30

Thank you for taking your time and sharing your knowledge on the subject- I will purchase the ointments and swap the cream I've been using. It is Dermovate ointment that got prescribed (1 month every day, 1 month every other day, one month twice a week). I'm 34 and not feeling that dry but then again my natural discharge is virtually non-existing- if that makes any sense, not sure it does maybe I am lacking natural lubrication? I will try and moisturise often and see whether that makes a difference. Again- thank you everyone for contributing, it means a lot.

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mia2201 · 11/03/2020 14:10

also, does anyone think getting on the combined pill could help?

OP posts:
over50andfab · 11/03/2020 14:52

Some combined pills can actually cause dryness, as can other medications - ADs like amitriptyline, antihistamines etc, which can dry out mucosal membranes - eyes, nose, vagina etc.

If the creams don’t help you could consider getting your hormone levels checked? Also try adding soy, flax seeds to your diet, also vitamin E.

SinisterBumFacedCat · 11/03/2020 17:48

Emulsifying ointment is good for washing, it comes in a tub and is like lard (!) you have to rub it with water in your hands to dilute it to a liquidy consistency before you wash with it. Also Vaseline is good for calming angry vulvas.

mia2201 · 17/03/2020 20:27

now been seen by an nhs Gynecologist- she thinks it's some sort of dermatitis. She is sending a letter to my gp to prescribe a wash, moisturiser, and more steroid cream for a month. I am so hesitant to use more steroid on the skin that looks normal most of the time. I started experiencing some shooting pains in my pelvis, it feels like it's deeper in the tissue above my vulva but not anywhere near my uterus/cervix. I really do worry if it's psychosomatic by now. Finding it hard living without a diagnosis. What should be the next step? any scans? i wanted to get pregnant this year but not feeling particular safe in my body and feel like my gp's think i'm being an overreactive madam turning up every 3 weeks saying it's not going away....

OP posts:
CorianderLord · 17/03/2020 20:36

Stop putting creams and lotions and steroids and soap and plants on your vagina. Plain water wash and cotton pants.

Shouldbedoing · 17/03/2020 20:45

@ClappyFlappy A bit late to be helpful, but it could be worms!

SinisterBumFacedCat · 18/03/2020 17:50

Stop putting creams and lotions and steroids and soap and plants on your vagina. Plain water wash and cotton pants

If your vagina is fine then yes. However if the OP is experiencing problems then of course she should treat her skin with prescribed medication and creams. If someone had eczema on their arms would you advise just washing with water and not using steroid creams? No because water dries the skin out! Which is the last thing the op needs right now.

mia2201 · 19/03/2020 09:32

I am using the 'potions' the doctor prescribed! I didn't study medicine, they did. I just want to feel safe in my body again, it's been 4 months of this burning... I think if this doesn't work I will need to find a vulva specialist, maybe a dermatologist? If anyone knows anyone worth recommending please do tell. Have a great day ladies!

OP posts:
mia2201 · 20/03/2020 14:01

found this today and will be trying out most of this advice- the list looks amazing and i have hope it will help. I also started using hydromol for washing/bathing and moisturising and I really like it!
www.reddit.com/r/vulvodynia/comments/dxewlp/how_it_went_away/

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mia2201 · 09/05/2020 18:27

HAPPY UPDATE! I think it is going away and I am so pleased. Things I've tried and think they helped:
exercise- honestly think this could have had the biggest influence. No doctor ever suggested how pelvic floor relaxation and strengthening your abs and glutes can improve vulvodynia. I've been exercising 30 minutes a day and since then I managed to walk longer and longer periods daily. Please feel free to message me directly and I can send you links to some articles and videos to what I've been doing.
amitryptiline- have been taking it since end of february, been taking 10mg for a couple of weeks, then 20mg for a couple of weeks and 30mg for last month. It takes a long time to kick in so you really have to stick with it. Haven't had major side effects and the one I noticed are worth it.
wearing loosely fitting clothing, no jeans for months.
Dermovate ointment- got it prescribed by a specialist- once a day for a month, every second day for a month and then third month once a week. Still in the second month. Using it on my vulva to include the skin at the enterance to my vagina- it's important to include it, not just outside labia minora.
So as you can see it's hard to determine what worked but I feel million times better and my pain if noticeable is 1 out of 10 and it was 6-7 out of 10 for around 6 months daily.

Things I tried and don't think made any difference: pure cotton pants, avoiding shampoo running down there, diet. I have been journaling with very detailed notes and I reckon mine must be provoked/nerves related that's why I suffered only when walking/in the afternoons. Chemicals and hormones had no influence, same pain every day no matter what cycle day it was.
If you think your case might be similar and have ANY questions please message me, I'd love to give hope/enpower and cheer any women up that are suffering with similar. I was at wits and end and cried for months. Don't be scared of steroid creams and antidepressants they play vital part in the healing and are safe. Thank you everone for their time to share their knowledge and experience. It made me feel so much better. Women are wonderful and so generous with their time! :)

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mia2201 · 09/05/2020 18:30

oh and please please make sure you don't overwash, I used to take two hot showers with rinsing my vulva thoroughly. I made a pact with myself to do it just once as my doctor said I'm 100% overwashing. And guess what I feel as fresh as I used to.

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