Hello, I have been dealing with this issue for about 3 months now.
I would like any insight on what you guys think this might be or what may help. The pain is so debilitating/scary that I have turned to God.
I'll start by saying I've had these feelings/small episodes of this as a kid and teenager. I just dismissed it as a UTI or something of the sort. In my adulthood whenever I felt one of these coming on I chugged water with D-Mannose in it and it would most times go away on its own and I'd go about my life. The symptoms I felt were stinging and burning inside my vagina and inside the urethra.
I had one of these episodes happen recently and I thought it was what usually happens so I took D-Mannose and waited for it to go away, it didn't. And less than a week later I found myself in an Urgent Care office. They wrote me anti-biotics for a urinary tract infection and I took those and didn't feel any better, I later got a call from the office that they didn't see any indications that I had an infection. I would go on to hear this a lot.
I ended up in the Emergency room twice - the first time they insisted it had to be a UTI again and I was treated with even more antibiotics and they gave me a CT scan which showed everything to be normal. I was discharged and I ended up back in the ER a couple of days later when things were still failing to get better. This pain is constant it never goes away.
This time in the Emergency room they gave me a pelvic exam, which they said I had some discharge which could be BV so they would treat for that - I got a ton of antibiotics and lots of pain medication. I tested negative for any STD's/STI's - they really didn't know what was wrong.
I got a referral to a Gynecologist and she said it had to be Interstitial cystitis, which I had doubts about because I never have issues peeing or pain with urination. She referred me to a Urologist and they gave me a cystoscopy which showed no issues in my urinary tract - and he diagnosed me with pelvic floor dysfunction. Again my symptoms are constant burning and stinging inside of my vagina, and constant burning and stinging inside and around urethra. No problems urinating and no pain with urination. He said that my pelvic muscles were a little tight when he gave the exam. I don't have any problems with sex with my husband and I can't think of what would've brought this on. Maybe I've had this since I was a child and I was having flare-ups even then?
Currently I'm taking Baclofen (muscle relaxer) I have found to be a small help but the pain never completely goes away. A typical day in pain I would take 20mg of Baclofen, Tylenol, Meloxicam, and Hydroxyzine for the anxiety this causes. All of this makes me extremely drowsy and tired.
I have an appointment with a pelvic floor doctor next week. I hope I explained my situation in a simple enough way, I'll answer any questions I can.
Prayers would be more than welcome.
Written by
cassie14
To view profiles and participate in discussions please or .
I'm so sorry to hear you're experiencing this pain. Your journey sounds very similar to mine. I too was told I had a UTI, or an STI, and then interstitial cystitis, spent countless wasted hours in the emergency room and given multiple rounds of antibiotics and pills that made no difference. Every time the next 'solution' doesn't work, the stress and pain gets worse. You're doing the right thing seeing a pelvic floor physiotherapist, especially if you've been told you have internal tension. I am keeping everything crossed for you that the physio will help.
Try to relax as much as possible, take baths, meditate, pray, whatever works for you. The more you can relax your pelvic area the better. There are also lots of lying and sitting positions online that can relieve tension in that region.
Wishing you all the best of luck with your appointment and don't give up, even if this person isn't the right one, you're on the right track and you will find an answer x
I had a similar situation to you including some excess discharge (ranging form really watery to pasty and white with no odour)
One of my swabs from a private gyne came back showing a slight overgrowth in aerobic bacteria and I started to take clindamycin and hydrocortisone (internal creams). I’m on week 4 and the burning and discharge has lessened and I’m taking this for another 2 weeks.
However I have also being doing pelvic floor excecises (I have pressure in my bladder) and pelvic floor release exercises so not sure if this has something to do with feeling better or if it is the creams.
But if you have excess discharge aswell as the burning pain I would suggest looking into aerobic vaginitis. A lot of women have this naturally present in their flora but only if there’s an imbalance this can present symptoms (much like bv) and only some women tend to have symptoms probably as an immune response to previous infections. But I think some of mine is definitely due to pelvic floor dysfunction and I am going to see a specialist physio but I believe the dysfunction is as a result of previous infections and my muscles responding to try prevent them or becoming damages (I had repeated yeast infections prior to this).
Thank you so much for your reply - I'll ask about aerobic bacteria - please keep me updated on how the clindamycin and hydrocortisone help after you've finished them.
hi Cassie..you are moving in the right direction...you need a pelvic floor physical therapist...my journey has been very similar with anthe burning feeling like a uti but its not...also i didnt have pain with urinating and no pain with sex...although mine started moving around and also affects my rectal area and sometimes pain after bowel movement for hours off and on ..multiple doctors, meds and tests and no answers...finally my docs pa sent me to pelvic physical therapy and gave me cyclobenzaprine muscle relaxer which is also an anti depressant and works well....i have been in pelvic floor physical therapy for a month once week and i am slowly improving but its 3 steps forward and 1 step backward...it can take months to retrain the muscles in that area and i do breathing and home excercises.... and its so nice to speak with someone who gets it and knows what is happening...if pt doesnt work you have the option of getting botox in the area to relax the muscles there...sometimes they need that....oh and i also tried vesacare to relax the bladder which helped...you can get oxybutalin patches over the counter which also relax the muscles down there...its a massive puzzle to doctors because there are so many nerves and muscles in the pelvic area...pelvic floor pts and SOME gynos and eurogynos understand it .....i also used to have similar flare ups as a child so could be related...hope this was helpful...i have been dealing with this for a while so i am not so panicked and scared as at first because my pt explained it all...if you want to stay in contact and support each other my email is mbhs21@gmail.com...best wishes and prayers,Audrey
Hi Cassie, your story sounds so similar to mine, except I did not have as a child. I was just walking (on a walker after my second back surgery). All of the sudden my vagina felt like it may fall out and was constant unbearable pain inside. 5 specialist later, while I had to ride in the back seat laying down because of the pain! I had exhausted all possibilities. Went back to my Gp. She said I have an idea, this bacteria was on my medical exam, but have never seen it. She did a vaginal swab and tested me for Actinomycetes Israelii. No other specialist had heard of it. The test came back positive!! I had to go weekly to an Infectious Disease Dr. Not because was infectious but, that they can treat with high powered long term antibiotics. She gave me Amoxoclav 800mg 4 times a day for several weeks. Then I had to go get a pic line put in at hospital out patient (drove myself) then use drip bags of same drug for 6wks intravenously. Then finish with oral. Took 12 months. Worked, felt normal and out of pain! This may NOT be what you have. I'm not in the medical field!! Just telling my story. Of course you decide if you want to ask for the test. Dr believes it was from an IUD I had many years previously. Not PID.. Pelvic inflammatory disease. Keep me posted if you like. Best of luck to you and prayers. Sorry for the book!!
Thank you for your reply, Yacoub. Just a quick reply for now because I’m at work - this might sound stupid but did your pee tests for infections come back positive ever? Like urine tests for infections. That bacteria might not show up in a urine test since it’s so specific. I’m also on muscle relaxers which help the pain so would it make since if it was a bacterial infection that my pain would be reduced if it was bacterial? My husband says it’s pelvic floor dysfunction from my muscles being too tight but I don’t know. I will definitely say my friend had something similar and asked me to ask for a bacterial swab! Would they be able to test for it in my uro gyno or do I need a reference to an infectious disease doctor? I also never had any birth control or IUD’s before. Nothing new has been introduced to my vagina when this happened. Also my vagina didn’t feel like it was going to fall out it’s just all over stinging and burning pain. The pain moves around - sometimes it’s stabbing pain, some days it’s constant. The muscle relaxer I’m on helps me with the pain and some days when I take it I don’t feel it at all. Very strange. My doctor also prescribed Gabapentin and I’m taking it for nerve pain.
You have to be sent to an infectious dr. They don't do the testing. They are just allowed to treat long term. Nothing showed in urine, although I've had many. Not associated. I had been to Urogyno to check for possible prolapses. My MD/GP did the swan test. Most Drs don't have it they have to order it first and then send to lab. Any other questions just let me know. Just def had to take probiotics, "real yogurt " also used Youcult (sp?) tiny bottle similar to Dan Activ.
Okay do you have an email that I can contact you at? The next update on me is I start pelvic floor therapy July 9th (such a long wait and I have private insurance).
Hi, I didn't take Baclofen for this, had to take later for something else, my body hated it. Also to Gabapentin which also didn't work, but made me so depressed I cried daily. Crying cause the stress and my symptoms feel worse. I didn't have problems peeing either. Of Course I'm not sure what your diagnosis may be. But really wanted to give u another option I used to stop my constant pain. If you do consider this and it helps you please let me know!! 🙏🙏
Hello Yacoub. I will be writing to my main physician and perhaps he can give me a referral to an infectious disease dr. Is there any way I can word this? Which bacteria should I bring up?
You have to have a positive result test that another Dr has found before you can go to an infectious disease Dr. as infectious disease Dr are only allowed to treat their patients on a long term basis. After so many Drs my GP did a vaginal swab which found Actinomycetes Israelii. Rare and most Drs only has this question on their testing. Few have actually seen it. The testing for that was a last ditch effort. On google most people have it on their face. My was in my vagina. Drs do not usually have the test itself, they have to order it and then send off to a lab. This is something completely different from my Levator Ani. Best of luck
Sorry I don't get on very often.. ask for a test for Actinomycetes Israelii. The Dr may look at you like your crazy, and wonder where you came up with that idea. Most Dr.'s hate it when people use the web as a source of info. I dont know if it intimates them or if they think we may be able to diagnose ourselves after they have been to school for 10yrs and have however many years of practice. I wish you the best honey.
I would be happy to but don't want to put my email address on the open site. I'm sure their must be a private message center like Facebook but can't find yet. Good luck honey!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Vulvodynia aching and burning pain 
Severe constant pelvic pain
prolapse Vagina 
Is is possible to inspect inside a rectocele with a flexi sigmoidoscope?
