hyperawarness of vulva- burning, could it be some sort of vulvodynia?

Women's health
1

Hello everyone,

I was wondering if anyone has a similar issue- my vulva seems to be overly sensitive. I have this burning sensation that intensifies as the day progresses, usually when i wake up i’m ok but then after walking/being active it starts to be uncomfortable, it feels like a sunburn. I have seen two gyneacologists who said my skin looks completely normal. Had an ultrasound too. It started as a misdiagnosed UTI, then had a BV which was treated with antibiotic. It all started in November. Currently on amitryptoline to see if it’s a nerve pain and using some steroid cream as well + lots of hydramol for moisturising. I hand wash my cotton knickers, don’t bathe, was my hair over the bath not in the shower- you name it I tried it. I can even feel my pubic hair prickling my skin, i never used to feel it. It’s like the whole area became super sensitive. My vulva doesn’t look particularly inflamed. Maybe I should find a vulva specialist? i’m in the midlands, hope someone can suggest something., I’d love to get diagnosed! (been checked for STD’s)

2

hi, I have this issue too, but I do have redness on localised areas. I use an aneasthetic cream called lidocaine. It numbs the areas as it blocks the nerves from causing pain. Try that as it helps me!

3

thanks for replying anxious girl! I’ve heard about lidocaine- is it on prescription only? Sorry to hear you’re suffering too! have the medical professional agree your skin is red? cause i’m 34 and to be honest i never looked down there before this all started and then started obsessing about inflammation but after being seen by specialists they convinced me my vulva looks normal/healthy. That brought me some peace of mind but the burning sensation doesn’t go away. All the treatments sort of ‘mute’ it but don’t treat it the way I was expecting to be cured. No diagnosis so trying everything and anything…

4

Hi Marta, I have similar symptoms but also some small spots/lumps. I can’t sit for long as burning intensifies. Can hardly bear to wear underwear, tights, trousers. Had a biopsy but results on hold due to lockdown. I use Dermol 500 both as soap & moisturiser. Also Hydromol to prevent pants rubbing and Eumovate steroid provides some relief. It’s been suggested it may be contact dermatitis but biopsy also looking for lichen sclerosis. Either way I find this all distressing and is changing the way I live my life. And now there’s more change with this virus! Hope this helps!

5

hi! i am relieved to see a post like this. i have been suffering from this for months now. i am a 35 female. it started for me after i had a labial surgery following the birth of my kids, which was about 8 months ago. it started for me as constant checking to see if i was healing properly, to being acutely aware of what my lady parts looked like and seeing if they looked normal. i had never really looked down there before. anyways, i always think im on the verge of something happening, or i feel like i see and feel things that may or may not be there. i did have a yeast infection a couple of months ago which i got swabbed for for confirmation. also at that point got a full panel std test done, including hsv. all negative. its very bizarre feeling that i would like to go away.

my sensations move around from inside my vagina on the right side to my left labia minora. i have realized that these sensations go away once my period starts, and return 4-5 days before my period begins again. i am trying to keep detailed notes as i have a gyno appointment scheduled for July as everything is inaccessible due to COVID. in any case, please feel free to inbox me if you want to chat further!

6

Hi Jaclyn, thanks for replying and sharing your story. It does make everyone feel less alone, doesn’t it? how long has your symptoms been persisting? It always surprises me that they suggest contact dermatitis- surely this would go away after some time? hope you get your results soon, I know it’s worrying not being able to see doctors now but my gp called me for a consultation and sent a prescription straight to my local pharmacy so there are some solutions in place for treatments. Sending you a big hug! I know how you’re feeling, bathing with some ointment helps me sometimes- is that an option for you?

7

Hey Suzy, sorry to hear about your ordeal! Poor you having to wait til July- I managed to see some specialists before it all kicked off. Their preferred approach was ‘wait and see’ and use moisturisers 5 times a day. I did ask for a steroid cream though so using that every second day. It’s interesting about the correlation with the period. I need to start journalling my symptoms too. My burning is more external -more on right hand side and quite spread on the area but also around the vagina opening. I’ve been trying pelvic floor stretching exercises lately but i think it might be too early to tell whether that could help. I have a feeling mine is a nerve pain so hopefully the pills will help but I also want to try for a baby this year and know will have to come off them when I get pregnant which worries me so much :frowning: I can’t believe this is happening and nothing works so far (begun end of November)…

8

Hey Marta,

Sorry you’re going though this at such a stressful time. I think you’re right in that it is some sort of vulvodynia probably due to tightness of vaginal and pelvic muscles. This sounds very similar to the symptoms I had. Lidocaine, which someone else mentioned, will help in relieving the symptoms for now and you should be able to buy it over the counter (you can in the U.S). What you really need to do is look for a pelvic physical therapist in your area, just a simple google search or calling around to physical therapy clinics near you and asking if they do pelvic PT. I had all these same symptoms and no gynecologist was able to give me any answers since they often aren’t looking for issues dealing with the muscular or skeletal system, but are looking for more acute infections or skin conditions. Pelvic pain like this can stem from either over-tightness or looseness of pelvic muscles (commonly after childbirth). I would recommend trying to make an appointment to see a PT, but in the meantime lidocaine should help and you can even look up some stretches and targeted exercises on youtube. Typing in pelvic physical therapy is a good start. It focuses alot on releasing the muscles in the hip flexors, butt and surrounding pelvic region. Alot of women hold tension in these area, especially those who are physically active, without releasing it. Sitting tends to be the position that most agitates pelvic pain which may be why you feel more intense pain throughout the day. Let me know if you have other questions. I had this same type of pain for over a year and I’m not exaggerating when I say pelvic PT changed my life, now I only have very minimal discomfort often after long runs or heavy exercise and I’m able to do the suggested exercises to relieve the pain.

Sam

9

Hi Samantha, thank you for the valuable advice! and hope! i’m seriously losing perspective and think I’ll never find out what it is. Saying that I have googled pelvic floor specialists where I live and did find some but due to the pandemic they aren’t operating. Will certainly save up for this and go as soon as we are back to ‘normal’ :slight_smile: For now I will carry on with some youtube videos i found, everyone keeps saying you must be super persistent when it comes to chronic health issues. I am very pleased to hear it helped you and you enjoy your life again. Thanks again, very kind to share. All the best!

10

Thanks Marta. It’s not quite a year yet since I’ve suffered. I’m older than you so I was told it was related to menopause. Then it was suggested it was thrush. I have never been allergic to anything, therefore surprised about dermatitis but your body changes I guess. The inflammation is from vulva to anus. This makes intimacy impossible as I’m so uncomfortable.

I use sensitive washing powder and it’s difficult to buy pants 100% cotton. Most have a tiny frill around the legs and this is not cotton! I only take showers and use Dermol which can often be soothing during a flare up. These can last for weeks. There just doesn’t seem to be a cure.

Thanks for getting in touch! Consulant comnented this is very common but no one wants to talk about it. Only my partner knows! Hugs to you too! x

11

You’re welcome! Persistence is really key even once you start going to PT its still a long road to feeling totally normal again. Hip flexor stretches really helped me. Another thing you can try is doing a hip flexor release, my PT taught me how to, Its easiest to do lying down. Go two finger up and two finger length over from your hip bone and and gently apply pressure. Its painful but you should feel the muscle release. I do this whenever it flares up for both hips. Gentle massage of the sides of the lower stomach, hip and pelvic area (the crux where your hip, upper leg and outer labia meet can also be helpful in encouraging the muscles to release. Warm baths are also great! Anything you can do that will help you relax.

12

Hey Samantha me again! I must say your story really motivated me. I’m off work at the moment so really have the time to work towards healing. Been living in lovely floaty clothing for a month now :slight_smile: I watched a few professional physio videos on youtube and after a self assessment I discovered my hip flexors are indeed a bit tight so wrote down a routine of exercises to work on that and relaxing my pelvic floor in general (I catch myself squeezing my buttocks standing at bus stops, and shop lines- maybe my whole pelvic area has been under some stress)- think that will be a good start before I can see someone in person to assess me. Warm baths feel so good too so I’ll run one daily after my stretchy routine.

A couple of questions regarding your case, I really want to believe it’s vulvodynia as it will provide me some mental reassurance as I keep worrying it’s something doctors don’t find- like I should trust them and the irritation is my only symptom but I read so many stories about women who got fobbed off. I may sound really obsessed with it but since I’d like to try for a baby at some point I’d love to get off medication/steroids.

SO: have you had stabbing sorts of pain? mine is just burning/irritation. I feel like a lot of women who have vulvodynia suffer so much more than me, I am having a better day today but yesterday I was so uncomfortable and most days it ruins my mood. I don’t experience any pain to touch- for example when I wash or during intercourse. I can use tampons just fine. It usually feels like it’s a skin issue or the tissues just below but nothing in the vagina. If you could let me know please. Many thanks for your time! Very generous of you.

13

Hey Marta! I’m so glad its motivating you. It really is a mental battle as much as a physical one and the stress overall doesn’t help the problem. No professional was able to give me a definite diagnosis regarding vulvodynia. My PT said there is really no way to officially diagnosis it and if you’re having pain having that diagnosis doesn’t help a professional since it describes such a broad range of conditions and everyone experiences it differently.

I also obsessed about it too I was determined for someone to give me an answer and most physicians just don’t know how to help you if there isn’t a definitive cause for the pain. I used the lidocaine occasionally when I would have a bad flare up but overall much less once I started stretching so I don’t think you have to be concerned about long term steroid or medication use.

That sounds exactly like my symptoms I never had any stabbing pain. It almost felt like some sort of light chemical burn, like a dull itchiness and constant burning sensation. Almost like a yeast infection towards the end of the antifungal use , but just constant. I never had any pain with sex or tampon insertion or touch. Mine definitely felt more like a skin issue which was part of the reason I was so convinced that my labs were missing something, I even considered a biopsy at one point.

One other thing I would recommend is trying to limit your sitting time, which I know is especially hard now, my symptoms actually improved alot when I moved for a new job that was less office based and I was doing more walking daily. Sitting is the position that most aggravates and tightens the pelvic muscles so trying to move around more will help. My PT also said to avoid crossing your legs as that causes more tension and if you are going to sit for a long period the best was is to “manspread” sitting with your knees pointing outward away from the chair.

Let me know if I can be helpful in any other way. I know this is for lack of a better word a really shitty and anxiety inducing pain condition and it feels silly when its overall more of an irritation than a sharp stabbing pain but still really deteriorated my mental health and confidence. So don’t let it get you down!

14

I just want to give you a big, big hug! I screenshot and sent this message to my girlfriends and husband to show how generous strangers can be. I cried loads, exercised for 40 minutes and had a long bath. All before lunch :slight_smile: THANK YOU, Sam

15

P.S. they were happy tears, your messaged moved me.

16

Ive been having the same issues for a couple years now and im still being told everything looks normal just take probiotics..

17

Hi Marie, thanks for reaching out. Feeling for you, it’s so frustrating, isn’t it? Where do you live? I’ve been doing a lot of research and I believe pelvic floor specialists are the way to go, I heard from a few women on different forums saying that’s the thing that helped them most. I already found on where I live and when the lockdown is over I will 100% go and see her. I’m so surprised primare care providers don’t suggest that. Such lack of awareness. Two years is a long time, how you find a way to resolve it. Do you take any medication for it? I’m on amitryptoline but I don’t think it’s doing much. My pain comes on when I’m out and about much, if I’m comfortable at home I barely notice it. When it’s intense I can feel it on one side more than the other. All the best, you’re not alone.

18

HAPPY UPDATE! I feel much better. I have carried on exercising every day (there is so much resource on youtube- please don’t be put off by the pandemic ladies, yes being assesed by a specialist physio is a great route to healing and I will still go and see one after co-vid lockdown myself but you can help yourselves now). I started with pelvic floor release stretches by Fem Fushion fitness and build up my routine from there- you will soon learn what feels good. I also listened to Samantha and stretch my hip flexors, I do spend a lot of time sitting and sleep with my legs bent so it’s important.

I’ve been taking 30mg of Amitryptyline for around 6 weeks now. My GP said I could build up upto 40mg but I seriously don’t need to. I can now walk for an hour non-stop and can’t feel any one sided burning at all, I can’ believe it. I believe it’s thanks to changing my mindset of feeling so resigned and disappointment in lack of diagnosis, doing more research what the pain isn’t (I read The Vagina Bible by Dr Jen Gunter which reassured me further- she does mention that amitryptyline and similar drugs sometimes don’t work as women don’t tolerate the side effects of them but if you don’t like one try another- similar as with contraceptives, don’t give up so easily, the side effects are temporary most of the time). I’m glad I upped my dose after loads of hesitation and advice against the drug from my well-wishing family members as they are also anti-depressants. The truth is doctors studied medicine and if we are serious about getting better it’s worth trusting doctors and well-researched drugs, the are safe. I think it really calmed my hyperactive nerves and I intend to carry on taking them for a bit longer, couple of months maybe, before trying to come off them as I’d like to try for a baby in the near future.

I also found journaling very beneficial- I felt so upset all the time I forgot to enjoy mornings when I had no symptoms, I just knew the pain would appear later in the day so I was sad ‘in advance’. Then I started rating the pain levels- and noticed that some days were better than others so I had a word with myself and said- be grateful for when the sensation isn’t there! This tactic is so satisfying as now my discomfort is ranging between 0.25 and 2 out of 10 so I feel happy most of the time! I would really recommend rating pain each day (and which day of your menstrual cycle you’re in).

The progress made the lockdown a much positive experience- I saw an opportunity in it! I started taking medicine around 12 weeks ago and was on a very low dose for a while so it takes time to build up the dose and takes even more time for the optimal dose to kick in. Exercise + DEEP BREATHING - probably around 6 weeks but obviously there’s other wonderful side effects like a nicer bum and stronger abs as well as endorphins which give you energy and improve your mood. So yes, if you’re suffering from vulvodynia armour yourself with patience, patience and more patience as well as pen and paper and really track what works what doesn’t (i have a table detailing each day what pants I wear, whether I used shampoo in the shower, how much exercise I did, pain level etc etc- it makes me feel a bit crazy but with trying so many things it’s worth it as you may notice a pattern).

I also switched to cheeky panda toilet paper and organic, unscented sanitary towels. No idea whether that contributed to the success but I’m sure your lady bits will appreciate less chemicals.

One last resource- an american podcast which will can really empower you and propel you in finding answers. It’s called The V Hive.

THANK YOU SAMANTHA FOR THE SUGGESTION OF PELVIC FLOOR EXERCISE!

P.S. I welcome any questions/direct messages, I promise to answer them and keeping my fingers crossed for you and myself. It’s so complex but please, please research, try and EXERCISE if you can. I found a specialist physio that knows all about pelvic floor dysfunction and can’t wait to meet and work with her in person when the lock down is over.

19

me again! after 9 days of being happy I decided to drop the amitryptoline to 20mg (planning to get pregnant this year and my GP said I’ll have to come off it). Unfortunately the pain returned. Decided to contact the pelvic floor physio and after spending 35 minutes with her on the phone she said she’s never came across a case like mine and I’m a bit of a mystery as usual when women suffer the burning pain at the enterance to the vagina the skin and tissue is sensitive to touch and sex is an issue to, I’m not like that and walking is the only thing that brings the pain on. She is going to speak to her colleagues to discuss my case. Went back on 30mg of the drug and feeling better again. I’d just love to find a solution which will let me to get pregnant and be pain free.

20

hi Marta

how are you doing now? i have exactly the same thing!! i am in the midlands too, has anything worked for you? x