Newly diagnosed...still unsure

Hello, my name is Marie and I am new to this board. I have had a rough time over the past year, but am feeling hopeful after finding this site. It's so hard having a condition that you can't really talk about to anyone.

My story started in March of last year. I had the first UTI of my life, took a 5 day course of antibiotics and went about my day. Two months later, the UTI resurfaced along with a new burning sensation. My doctor believes that the original UTI had never gone away. I was put on another round of antibiotics that took away my UTI symptoms, but never took away the burning sensation.

In my mind, I justified the burning as residual inflammation from having the infection for so long. After a few weeks, the burning went away and I thought I was in the clear. Then a few weeks later, the familiar burning returned. Over the last few months, the burning has come and gone with the time in between the "flares" becoming shorter and shorter. The burning is now constant except when I am sleeping or when I first wake up.

I went to my gynecologist who thought it sounded like Interstitial Cystitis. I then made an appointment with a urologist who did not think my symptoms sounded like IC at all. I do not have any frequency issues, bladder pain, etc. She instead diagnosed me with vulvodynia after doing the q tip test. She gave me a script for physical therapy and a compounded cream.

I just started the physical therapy this week....I guess I am just still worried that something is being missed. If I truly have vulvodynia, then I am prepared to move on and deal with it, but I can't stop this nagging feeling in the back of my head that says it's something else. I do have scheduled appointments in Feb and March with two different specialists, but it's so hard to wait when you are miserable.

I feel like I'm not giving the physical therapy my full attention because deep down I don't feel like it will work. Is this a normal state of denial I'm in after being newly diagnosed? I guess part of my problem is that I really can't tell where this burning is coming from. My physical therapist had a model of the pelvis in her office and told me to show her on the model where the pain is, and I couldn't do it because I truly don't know. And as for the q tip test...wouldn't that be painful or uncomfortable for everyone? Dry cotton being poked or dragged along such sensitive skin seems like it would be similar to the feeling of pulling out a dry tampon.

I would really appreciate it if anyone could give really detailed descriptions of the burning pain you experience. Are you able to pinpoint an exact area? Or is it more general?

Thank you!

Marie, I am new here also, I was diagnosed in September after I had self treated for what I thought was a yeast infection. After the monostat didn't work I went to the walk in and was diagnosed with BV. He took samples for tests for STDs, BV, yeasts and I don't know what else. Was put on Flagyl and another yeast medicine. All the tests were negative and then he put me on Estrace vaginally and a steroid ointment to the perinium. No results.
Anyway, to answer your question my burning is just generalized all around my labia and vulva. Like you the only relief I have gotten is when I'm sleeping and for about an hour after I get up. Then the discharge starts and the burning starts again. My pH according to my gyn is normal. I was just put on Neurontin last Friday along with a muscle relaxer. I also have been going to my chiropractor every week at first now every 10 days. Yesterday and today have been the best days I've had since Sept. 4. I do not know what is helping. A yea a whole lot of prayers also. I am still burning but most of the last two days have not been as bad as the other ones have been.
I don't use any soap on my vulva, just warm water and have quit using deodorant soap at all, using Dove bath lotion.
I hope I answered your question.
Oh yes, the reason I thought of the chiropractor is because I suffered a fx pelvis a year and a half ago and have not been able to relax my muscles down there since.
I have set on my right buttock since the accident and I figured I have pulled my sacrum out or something from the constant tension. I have also had a very very stressful fall emotionally. I'm figuring all of that is contributing to my problem, especially since I cannot relax.
Hope this helps. I'll keep watch for your reply.

Hi Marie, my V started the same way from my first ever UTI and I spent quite a long time thinking it surely couldn't be the pelvic floor. I have a very unstable pelvis but I still couldn't believe the pelvic floor could cause my symptoms then I started doing alot of research and finding lots of women who started thie same way and it was indeed the pelvic floor because they got on top of it with physio (PT) so I took myself off to get my pelvic floor checked and it's the tightest pelvic floor the physio has ever seen in her 30 odd years of practice. I find now if I can avoid clenching it makes my pain much less and if I clench it gets much worse. Because of my unstable pelvic joints I haven't had the trigger points removed or any stretching of the muscles done yet but I can now see the connection. I think it's quite normal to think it can't be the pelvic floor, I know lots of women online who sound like very typical pelvic floor cases who are reluctant to even get it checked because they can't believe that's their problem so it's good you've taken that step. UTIs can cause the PF to spasm because of the irritation so it's perfectly plausible that's your cause. If you're worried about other causes you can go to a GU clinic and be tested for all infections, try a week or so of 1% hydrocortisone cream to see if it might be a skin condition and of course cut out all chemicals to the area without needing a doctor to do those things with you. The q tip test is a very light touch so women with no pain wouldn't really feel anything except a light tickling sensation but of course it only tells us what we already know, we have pain there! Try and make good of your PT sessions because if the PF is your cause it could be your answer and you can still try other things alongside the PT you don't have to try each thing seperately. Your PT should be able to tell if you have spasm in your PF and I assume she can feel some or she wouldn't continue with treatment so it's a necessary step to carry on with it. Regarding the UTIs I get repeated ones since this started and my physio said it's because the tight PF inhibits the detrusor muscle and the detrusor muscle is responsible for emptying the bladder so incomplete emptying leaves urine in the bladder which makes us very susceptible to infections. Makes sense when I know the technical reasons! I do double emptying to try and get as much urine out as possible each time and try to keep my PF as relaxed as I can get it to help with the pain. There are a few of us having PT in the physiotherapy and biofeedback thread so if you want to talk more about your sessions you'll find us in there!

Meelie- Thanks for taking the time to reply. I am glad to hear that you have been feeling better lately. I can totally relate with not knowing what is helping or making the condition worse. Mine seems to have no rhyme or reason for what causes it to flare up or get better.

Sarah- Thank you for the PT pep talk. I know I need to stick with it and give all my effort. I think if I could just get my stress level under control, I would be so much better off. I've just been so worried for so long about what is wrong with me. On top of that, my husband and I had plans to start trying to conceive right when all this started happening. I think that is just adding to my stress because it's starts a vicious cycle of worrying about my biological clock ticking and seeing no light at the end of the tunnel with this issue. I've only had 2 PT sessions so far so I know I need to just be patient.

Ask your PT about some deep breathing exercises Marie, not only will they help relax the PF but also help with stress. You're very welcome for the pep talk and I hope you start making some progress really soon.