How it all began

I'm a relatively new sufferer of vulvodynia compared with many of you, I've been having problems for 5 months now and it seems like a lifetime. I'm no stranger to pelvic issues though as I have chronically unstable SI joints and lots of back pain, muscle imbalances etc due to having weak connective tissue.

Anyway, 7 months ago I noticed a tender spot on the external skin of the vulva right over the pubic bone, I put it down to my other issues in the area and ignored it. 2 months after that I went to bed one night feeling like I had thrush coming and decided to see how it panned out by the morning. I woke up the next day with severe burning and swelling in the vulva, also a sensation of feeling like I had a knitting needle in my urethra. I took a Diflucan capsule but couldn't get the urethral symptom out of my head. The Diflucan did nothing and I started to get shooting pains in my abdomen and up my back after peeing but not classic UTI symptoms so I took a urine sample to the doctors.

A Nurse Practitioner (NP) tested it and said there was no infection present but blood in my urine and gave me a 3 day course of Trimethoprim stating I'd feel better within a day or so. I did indeed get rid of the knitting needle sensation but not the awful soreness and burning. I had a look with a mirror and found I had two distinct lines running from either side of the urethral opening forwards into the vulva and these red lines were very sore. I must point out I had no itching so these weren't scratches.

I went back to the NP and she gave me thrush cream which of course didn't work. Then she swabbed me for thrush and bacterial vaginosis and it came back negative for both so stated I needed to see a doctor. After a week of trying every morning to get to see our only female doctor and being told she was fully booked I saw a male doc. The males at our practice won't do pelvic exams on women so he just printed off some bags for samples, took my blood pressure and temperature and told me to see a nurse. She had no appointments for a week so another week passed before I got the swabs done. A high vaginal swab and a urine culture revealed nothing. She told me to see the female doc and I tried again to book in only to find it would be at least a month before I could see her.

Utterly fed up I went to our local GU clinic where a nurse told me he thought I should go to a clinic run by consultants rather than that one which is nurse led. I waited another 2 weeks before finally getting an appointment at this other GU clinic and saw a lovely doctor who swabbed me for everything and even took a HIV test but it all came back clear. She gave me a steroid cream to use which didn't help so she recommended I see a dermatologist who specialises in the vulva so that's booked for 9th August. In the meantime she said I have vulvodynia which doesn't mean anything except "pain in the vulva" and possibly vulva vestibulitis syndrome too which explains the sore skin and advised me to look into pelvic floor retraining. So I got a diagnosis quickly really and I'm not expecting the dermatology appointment to find anything except non specific inflammation.

I already see a physio for my SI and back problems and talked it over with her and she said we'd try and do some work on various muscles to see if it helped but if not she has the details of a womens health physio who could see me instead (privately of course) however I haven't seen my usual pysio in a while as I had to cancel my last appointment because I had an ear, nose and throat infection that progressed into full blown "mute for a week" laryngitis!

I see my usual physio this week and I think I'm going to ask about the womens health physio then. I'm also going to get her to check the areas in my back where the main nerves that supply the vulva are while I'm there.

So far I've tried:
zinc and castor oil cream - soothing but didn't heal
vaseline - soothing but didn't heal
vitamin E oil - soothing but didn't heal
comfrey ointment - as above
calendula cream - irritating
calendula ointment - soothing but not healing
low dose steroid cream - didn't help at all
low dose steroid ointment - soothing but didn't heal
coconut oil by mouth and applied to skin - no change
pelvic floor exercises - no change yet
pelvic floor massage just inside vagina - lots of sore spots and this can reduce the burning for a while afterwards so I'm thinking that's connected
thrush treatments - no change
UTI antibiotics - no change to vulva
balance activ gel - no change
rinsing after peeing - no help
applying nothing - symptoms much much worse

Symptoms are:
general burning in vulva
red sore skin inside vulva
burning feet exactly the same as burning in vulva
stinging of the skin if urine touches it
Skin in vulva feels very dry

Because of my SI issues I can't use a doughnut cushion and also because of my connective tissue problems I have trigger points practically everywhere, my piriformis is full of them both sides, likewise my back muscles and other hip muscles so I'm very suspicious of the muscular element in my case. Massage doesn't remove these trigger points but does relax them temporarily so it's a bit of a problem for me on that score. I'm not suitable for surgery as these sore red lines I had have kind of joined up in an upside down horseshoe shape so all the skin between them is sore too so it would be too much to remove and the generalised burning also rules me out. I can't have sex at all and haven't been able to since this started and I feel like the skin chafes on everything, clothes, seats, skin on skin etc so I'm in pain all the time whether touched or not.

Things I intend to try are massage and pelvic floor work with a physio, sea buckthorn oil to attempt to heal the skin, I'm asking my GP when I finally see her for a diabetes test (because of the feet angle) and I may try and convince her to test my hormones too as my periods have changed alot in the last year. I intend to check the ph of my vagina and urine as soon as I receive some ph strips I've ordered in case there's a ph issue but I'm not expecting one. If none of that helps I will change the painkillers I use for my joints to one that is suitable for the vulvodynia too but obviously that won't heal the sore skin so I'm still going to have issues with that.

I'm literally at my wits end with this, my joint problems have never depressed me even though I've been in constant pain and very restricted for 6 years with them but this depressed me right from the moment I realised it was getting chronic. Like some of you my pain is at its lowest first thing in the morning which I suspect is down to nothing touching the skin at night and laying down so the blood doesn't all pool in the pelvis but as soon as I get up it starts again.

Sorry this is a long post and for those of you that made it this far thanks for reading!

Wow Sarah, sounds like you've tried a lot of treatments trying to get your skin back on track. Hopefully, the dermatologist can recommend something to relieve the skin.

Can I ask, what is SI?

I think you've got a good plan of attack. If your periods haven't been regular for a while perhaps something has changed in your body. So hopefully the tests can give you some insight.

I'm currently doing physio which requires massaging. And it has helped me, but I'm just finding it difficult to set some dedicated time to doing it. As for internal trigger points, that's the next step in my physio treatment but I don't think my body is ready to deal with it yet.

I don't know if this may help, but my vagina use to be quite temperamental too. I used to get yeast infections and skin irritations quite frequently so I decided to remove anything that could possibly irritate my skin in the region i.e. anything containing fragrances and dyes. So I stopped using soap down there just water. I wear 100% white cotton underwear in case the dyes may irritate me.

Depending on the weather, I have sometimes slept with either a heat pack or cold pack depending on which seems to soothe the irritation more. Like burning pain I used the cold pack; achiness I use the heat pack.

SI (Sacroiliac) joints are the joints at the back of the pelvis that join the wings of the elvis to the triangular sacral bone so essentially it's how the pelvis joins the spine and a problem there will have an effect on the pelvic floor. Sorry I've been going to physio so long I've got used to shortening things down and speaking "physio speak"!

I've tried so many things for my skin but to no avail, all the things I've tried would work on other areas of the body but do nothing for my vulva unfortunately. I'm seeing my GP on Thursday so we'll see if she has any suggestions.

I forgot to say I've been following the no chemicals in the area, white cotton underwear, avoiding friction routine for nearly 6 months and it hasn't helped either.

You've been really good in trying everything out. Fingers crossed the doctor has some new suggestions... Just got to keeping on going and trying everything you can. =)

I agree, if you don't try the basics it could be a simple solution that's staring you in the face!! It doesn't seem to be with me however after all my failed attempts but I want to get everything tested before I go to painkillers purely because of the sore skin angle, if I had pain but the skin looked normal I would have asked for the tablets on the first appointment. Most of my pain does usually stem from the soreness of the skin and it troubles me that I don't fit either the general vulvodynia or the vulvar vestibulitis criteria spot on. The burning I have fits general vulvodynia but the doctor said she really didn't expect to see very inflamed skin which I have and the vestibulitis angle doesn't fit entirely either because I get unprovoked pain and not just pain with touch etc. It's very baffling and I'm going to try and get as many tests etc because I hate not knowing what's causing it!

As for general physio, this hasn't helped me even though I have problem muscles all over and realigning my wobbly pelvis hasn't helped either (although it doesn't help it won't stay in place) so I'm definitely going to need a womens health physio to at least have a chat with. I've been doing pelvic floor exercises daily for a while now and that hasn't helped either but I plan to continue with those for a few more months to give them the best chance.

The stinging in the feet and vulva definitely sounds like a nerve disorder. as far as your skin..have you had a biopsy? i had a biopsy of the skin to rule out a chronic skin condition called lichen sclerosis. I did not have it. but, my skin gets very red when i have pain. i hope you get to the bottom of this soon. I tried as many things as you did. the creams/ointments created more pain for me. they hurt my skin. the only thing that has worked for me is neurontin and lyrica. i do have Vicodin (pain pills). I admire your strength. I don't think you have to wait for pain relief while you try to figure out what is wrong w/ the skin. the pain is horrible without meds. don't wait for relief. good luck.

Thanks, I'm scheduled to see a vulvar dermatologist in August so I'll probably get the biopsy done then. I know what you mean about the referred pain sounding nerve related but when I looked into it I found lots of sites saying the referred pain can happen even if it's a skin condition so I'm unsure exactly what is going on! The reason I've held off tablets for now, apart from waiting for the dermatology appointment, is because I'm already on strong painkillers for my joint problems which help with my joints but not my vulvar issues so I'm not keen to have to go through getting used to new meds unless it's absolutely vital, I'm terrible for side effects and very sensitive to medication so it's sometimes a nightmare getting used to certain meds. However if I have to I'll definitely be taking tablets, I don't intend to suffer needlessly for the rest of my life with this or the joint issues.

Any tips for the biopsy appointment? All I can think of so far is to dose myself up with my strong painkillers, get someone to drive me so I can lay down on the hour long journey home if I need to and salt baths when I get home, anything else I should do that you can think of?

I would recommend taking your pain pills before. You will receive about four Novacaine shots in the opening of your vagina. It is a little uncomfortable..ouch. But, after that, you will not feel anything. They take a very small piece of skin. You won't feel anything on your drive home because the area is numb. It is just the part when they put the needles in to numb it that hurts a little. We (vulvodynia sufferers) have had far worse pain in our lives w/ this disorder than the tiny needles they put in. You will be just fine. It is really no big deal. I don't know where they are taking the biopsy from, but mine was right in the opening of the vaginal canal. I never felt any pain again. You will have a tiny hole there that will eventually grow back together.

I totally get why you don't want to take anymore pills than you do. Sorry your pain pills don't help the pain in the Vulva. We will get this thing figured out!!!

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Well I've just had a re-read of my details thanks to the numpty above who seems to think steroids will sell on this site, what a prat! Anyhow, an update on my symptoms: my foot burning turned out to be something else and unrelated to the vulvodynia, I had a nasty bout of plantar fasciitis (again due to my loose ligaments ) and got rid of those symptoms completely with massage and arch supports so anyone who has a similar connection it's worth actually checking your feet out to see if they have a different problem going on! It genuinely felt like they were part of the same problem but I got rid of the foot burning ages ago so clearly they aren't!

Good deal. Yeah..love the advertisers who try to get in on our forum. how dare they Hope everyone is enjoying the weekend (as best as you can). do you all celebrate Monday as Labor Day? it's a holiday here in the US, no work!!!

Nope Monday isn't a holiday here in the UK but last Monday was a Bank Holiday, no more Bank Holidays here now until Xmas.

Anabolica for pelvic floor muscles, that is funny. I just try to imagine, what a women could do with a men having strong powerful killer muscles down there :-)

ha ha!

Are u trying to sell someting on here mspaul

mspaul was most certainly trying to sell us something..

Sammers are not uncommon on forums..handbags was the last one!

She has been deleted... (feel like a cyberman off dr who!)