New, and a bit overwhelmed! Any advice would be appreciated

I'm a 23 year old female and have had various issues since I was about 18.
I have had unexplained pain and burning that comes and goes throughout the years, but it has worsened recently- both in frequency and severity. I had HPV at age 18 but it went away on it's own and I've had normal paps since. I was also prone to yeast infections during the past few years, and it has been hard to get that under control. I'm realizing now that while I did have many of these infections confirmed with tests, plenty of them weren't. I suspect that I was treated for infections that I did not actually have, and that I was actually suffering the effects of vulvodynia. I had one incident at age 20 where my skin became so inflamed and red that I was terrified and in excruciating pain. One doctor told me it was "severe irritation" and another told me it was likely herpes. Upon completing a blood test however, I learned that neither myself nor my partner at the time carried the herpes 2 virus, although I carried the type 1 virus (which mostly presents as cold sores- I've never had one but my mother gets them). This episode eventually subsided, but I was left unsure about what had really happened.

Over the past 6 months or so, I have had difficulty getting rid of a persistent UTI despite taking several courses of several different antibiotics. Although a culture confirmed the infection is now gone, I experience burning and pain in that area in addition to urinary frequency. Some days it's worse than others, but it is difficult to cope with. A cystoscopy revealed no issues with my bladder. I also experience pain in the skin on the outside of my vagina and inside the opening of the vagina. It's usually burning, but sometimes itching too (but a test said no infection a few days ago). The skin is somewhat red and inflamed. My gyno told me to use aquaphor and/or vitamin e oil but it's not giving me much relief. When I asked about vulvodynia she said it was probably an appropriate description, as it basically just includes vulvar irritation, but she didn't do any tests or explain further. I've been looking up dietary things to try and am wearing loose fitting clothes, avoiding thongs etc. I think I really need to see a specialist who deals with vulvar pain though. I'm a bit overwhelmed in terms of asking the right questions once I get to a specialist though. I am trying to keep up with all the dietary, lifestyle, medication, physical therapy options there are! A lot of people on this forum seem really knowledgeable and experienced. I'd be so grateful to anyone who has suggestions about this!

Hey I will respond to you tomorrow im on my phone now and it annoys me to type here but wait until tomorrow and I'll get back to you

Have you seen a Uregynocologist? They specialise in bladder problems. That might be an idea as well as seeing a vulva pain specialist. I've never had problems with my bladder but I have burning and itching around the outside entrance/vestibule area which is really inflammed.

Have you been tested for endometriosis? It can cause bladder issues and discomfort .

Endometriosis diagnosis is through surgery, you cant just be tested for it.  And it really doesn't cause frequent urination.  It's mostly pain around your period.  I have that nonsense too fun times....

Vulvodynia however, can actually cause frequent urination. I had it with mine. I def think a specialist is the right person to go to.  I was doing physical therapy and trying different medications before I said forget this and opted for the surgery.  I tired changing my diet and nothing happened if anything I was more irritable because I couldn't have the food I like.  I tried acupuncture, massage, and yoga.  Those helped relax me but I don't think they really did anything for my pain.  I would get rid of any scented products you use such as liners, tampons, pads, soaps, detergent, etc.  Also, when I was in pain I would make a baking soda paste while I was in the shower.  I mixed baking soda with warm water and leave it on for about ten minutes.  Wash off with water.  It would almost immediately take the sting/burn away.  Mine was mostly provoked, but toward the end it was getting pretty bad.  Where exactly do you live?  When I was looking for a specialist I googled "South Florida + vulvodynia specialists" and found my doctor.  So that's a way to look for a good doc.  I also went to Cleveland Clinic and where they knew their stuff, I just felt better in a private practice- but that's my personal opinion. 

There really aren't many tests they do.  Have they done the q-tip test though?  If you react on that, they usually confirm v that way.  But my doc took one look after the qtip test and was (the first person to do so!) able to tell me exactly where I had and where it was located.  I also took oral pills, and compounds.  Nothing for me worked, but that doesn't mean that for you it wont.  Common medications are: Gabapentin, Amitriptyiline (Sp??), lidocaine, lyrica, etc.  Do NOT go to someone who merely brushes you off that is not ok.  There are treatments for this, but you must know there are no cures.  I am fixed, but not cured, my doc absolutely refuses to call it that even though I now feel perfectly fine and the likelihood of it coming back is slim to none.  But I guess it can (ger) I think he said like 10% chance. 

ANOTHER thought, sometimes your muscles can be involved.  This is called vaginismus and when physical therapy is needed mostly.  I did that before and after my surgery for a total of about a year and a half.  It was awesome and I recommend it.  My muscles were so sore that it actually felt somewhat good (but awkward lol!) to have them released.  I still go in for touch ups sometimes, but I'm ok.  Some doctors also use botox for the muscle to release.  I wouldn't go charging for the botox right away, but know that it is an option.

My best advice is to find a specialist, get a diagnosis, and go from there.  If you don't know what you have, you can't treat it.  Let me know if you have any more questions or need anything!

Thanks so much for your feedback ladies. I have considered asking about endometriosis, but as I look into it more I don't think I have it because my periods are actually quite mild in terms of pain and flow. Thankfully, I was able to find a gyno in the medical group I usually go to who specializes in vulvar disorders. I will definitely request that she do a q-tip test because the other doctor didn't do that before agreeing that I likely had vulvodynia. So my next plan is to get in to see the specialist and I think I'd like to ask what she thinks about my prognosis, if she's able to say. Since my irritation has been intermittent and often not intensely severe pain before recently, I'm hoping she'll say I can try non-medication/surgery options for awhile and have a decent chance of at least getting back to where I was before all this UTI stuff. I feel like I can handle managing pain from time to time, but it's so hard to cope with intense and constant pain! I'll ask about possible muscle spasm issues too. I've had muscle spasms in my back for awhile, but haven't specifically noticed any painful spasms in the vaginal area.. but I assume it wouldn't exactly feel the same as my back anyway. It's so good to hear that people are able to try different things and seeing improvement. I'm definitely feeling a bit better as I continue to do more research and hear from others with experience. I think that some form of meditation will be important for me too, as I'm sure stress doesn't help these symptoms.

don't get discouraged if it doesn't help right away if you go the medication route.  I was told to go a couple of months before I gave up.  Some people do have endo that don't present any symptoms.  But usually those people are trying to get pregnant and find out that they have endo that way.  I would assume you would have more IC if anything, but since you had a scope I guess you're ok! Another thing I would suggest is don't tell your doc anything let them take a look and see what they say then ask your questions.  If they think you are telling them what you think you might have they'll go off on that tangent and maybe not properly treat you.  It took years for me to find a good doc who located my problem.  Trust me you wont have to ask about muscle spasms a good doc will find them (same with vulvodynia!).  Make sure the new doc is a specialist.  I hate run of the mill gynos because they don't know jack. Well most of them, one of them gave me herpes medication when I def don't have that (been tested numerous times) and never had an outbreak.  She said well "just in case". Then I broke out in hives and she said I wasn't allergic.  Never went back there!

That's probably good advice! I do sometimes tend to ramble on about various things before letting the doctor assess what's going on him/herself without my super-anxious commentary. I was able to make an appointment with a specialist, so fingers crossed that she'll be a good doctor and will have some good info for me.

Hi Gabrielle - sounds like your vulva has been through some trauma what with all the infections and related treatments you describe. So another avenue to explore is whether your pelvic floor muscles have tightened up as a result- it's a common response when your vulva is traumatised in some way (eg for some people even applying an anti fungal cream can traumatise the vulva) and it can become a vicious cycle trauma = tightening = pain = tightening = pain and so on. Your PF muscles can shorten and/or go into spasm without you knowing it (it's not like a leg muscle going into spasm). As well as causing vulval pain tight PF muscles can also cause urinary frequency/urgency issues. Also if you've had back or hip problems that might also be a factor - it was for me. So get yourself checked out for any possible alignment problems.

Basically, don't write anything off, explore all avenues. Vvd can have several causes and components to it so do get some good professional advice and support, that's the first step. I had it for 18mths and I'm fine now so it can be sorted!

Loulou, can I ask what your history is and how you got treated?

Hi Caropes

No probs. I'll try and be brief!

I was 48 when it started - no history of painful sex or tampon use, had occasional UTIs or yeast infections when younger but not major problem. My vulval pain started after a stressful period in my life and treatment for what i and my GP thought at the time was a fungal infection (despite tests coming back negative). I had a red, inflamed and sore vestibule and inner labia, so painful at times that I couldn't even bear to wear knickers and couldn't sit - I spent a lot of time in those dark days on my back, knickerless, with an icepack between my legs! Often had a white, milky non-smelly discharge. When my vvd was at its worst I also had clitoral pain and urinary frequency (felt like i needed to go to the loo all the time). Sometimes I also had lower abdominal cramps (which seemed to sometimes link with the urinary frequency) which made walking painful. It was basically a nightmare that i'm sure everyone on here can relate to in some way.

Was tested for everything under the sun - all STIs, thrush, HIV - all negative. Had ultrasound - all ok. Internal exams were a nightmare - they couldn't get the speculum in it was so painful. Q tip test was positive which led to the vulvodynia diagnosis.

Early treatment was just lidocaine. Didn't work, made it worse. I didn't want meds, only as last resort, so went to a women's health physio to check out my PF. Had a biofeedback assessment which showed my PF muscles were a little tight. But the real breakthrough was finding out, by chance, during a chiropractic assessment that my pelvis was misaligned. My sacro-iliac joint had got 'stuck' and my pelvis was twisted as a result, causing intermittent back pain over the years and causing my pelvic bones and muscles to be in the wrong place (to put it simply!). I had absolutely NO IDEA as nothing was obvious! (I put the occasional back trouble down to age and wear and tear) Ultimately there was a knock on effect on nerves (everything in the lower back, pelvic and genital region is INTIMATELY linked in terms of muscles, tissue and nerves - just google some images) and although my body accommodated the stresses for many years (unbeknown to me), i think it was the stressful period in my life combined with the unnecessary thrush treatment that was the final straw for my body and which resulted in vvd.

I had regular chiropractic treatment to realign my pelvis, started doing yoga and pilates and gradually my vvd disappeared. I've been back to normal now for about a year - i just pop in here every now and again to catch up with certain people and offer my experience in case it helps someone. Mainly I do that because i NEVER would have thought that back and pelvic structural issues would have caused my vvd - i was convinced for ages that I had some kind of infection that the tests weren't picking up. And people just don't think that back and pelvic problems can cause vvd (the 'vvd specialists' i saw never mentioned it) but i know from my own experience that they can! So i just want to highlight this as a possibility in case someone is in the same position I was. I really wish that a back and pelvic structural and muscular assessment would become part of the standard diagnostic test for vvd like the Q tip test is, even if it only serves to rule it out as a cause.

Hope that gives you a summary. If you want more detail just ask away, or you can check out mine (or anyone else's) older posts go to 'Memberlist' at the top of the page, sort by username to get alpha list and find the person, click on their name, select 'statistics' tab, under Posts heading click the option 'find all all messages posted by X'. This brings up a list of all the persons posts and if you click on a post it takes you into the thread so you can see their comment in context.

Sorry - i've never been good at brief posts!