Supposed BV for years-help

For some reason I can't post in the ask a doctor forum. Anyway, maybe someone here can help me out. I will warn you that this will be kind of long because I want to include every little detail in case someone can pick up on something and make a connection that I can't. I truly appreciate anyone taking the time to read this.

Main symptoms: constant white, sour smelling vaginal discharge, pain with insertion.

Back in January of 09, I had a severe UTI. It was the first one I ever had and I took about a week  to get to the doctor because I didn't know what was going on . He said my urine was the worst he had seen in a while. Anyway, all they did was dip a test strip into the urine. I was put on Cipro for 5-7 days. I went back at the end of the 7 days because I had developed a vaginal discharge. Doctor took another urine sample, said the urine was fine, did a vaginal exam and claimed I had BV/Yeast and said there were a lot of WBC. I was given flagyl tablets and diflucan. At the end of those 10 days, I went back again because I STILL had discharge. Doc still said BV though he never sent out any cultures, tried Dlindamycin. No help. Tried Doxycycline, no help. Tried Azithromycin, no help. After all this, which was about 3 months of random medications, I decided to see a gynecologist instead of my PCP. I'll also add that he did STD tests and a pap and all were normal/negative.

The gyno said cervictis and put me on flagyl a bunch of times and of course it didn't help. Then he claimed I needed cryosurgery for the cervicitis and I regretfully didn't get a second opinion and let him do the cauterization. A few days in, I noticed my discharge was back, in addition to the watery discharge that the cryosurgery gives. The doctor said it was too early for me to tell, I assured him I know my body. I saw him a week after and he confirmed that I was correct, my discharge was still there and he deemed it 'chronic cervicitis' and said he did about 80% of my cervix and 20% of it still looked infected, so I need ANOTHER cryosurgery. Again, no second opinion, I was naive and trusted this doc at the hospital, and did the 2nd cryosurgery. I was given Naproxen for the pain. 3 weeks passed and I was discharge and pain free. I thought maybe this nightmare was finally over, since this was about 7 months into the infection. After 3 weeks, the discharge came back. I decided to seek another specialist and didn't bother going back to the one that did all the cryosurgeries.

I saw two other doctors during this time. One did a vaginal ultrasound and claimed I was inflamed inside. He couldn't find my left ovary, but didn't seem worried about it and claimed everything else looked fine. He also said BV, sent out a culture, but the culture came back negative. Put me on doxycycline for 3 months, but it didn't do anything. I saw another doctor, she also said BV off the bat, sent out a couple of cultures, but those also came back negative. After a few more rounds of flagyl, and cleocin this time in gel form, I was referred to a specialist at a Vulvovaginal Clinic. All the mystery cases get sent here, apparently.

I have been working with the vulvovaginal obgyn for about a year now. At first he too said BV, sent out aerobic and anaerobic cultures, as well as cultures for yeast. All negative. I still have a lot of WBC and what appears to be a bacterial overgrowth, but nothing ever grows out and no medicines ever help. Up until 3 weeks ago, my pH was normal the whole time, but recently, it appeared to be elevated slightly at 5.0. This issue has never gone away. It has been constant aside from the 3 weeks after the 2nd cryo where I seemed to be ok for some reason. He said maybe it was DIV (desquamative inflammatory vaginitis) and put me on steroids, but that made it worse. Then we tried more medications that didn't do anything and even boric acid suppositories, which I had to stop 3 nights into treatment because I was having a bad reaction to it and it was making me bleed.

The vulvovaginal specialist has said he no longer knows what to do with me and he is going to refer me to someone else. I am so sick of being bounced around from doctor to doctor, being blindly written prescriptions to take when nothing works! Why put me on the same medications 12 times when it didn't do anything the first 11?
I've been on 13 medications in total, and a lot of those were more than one course. The first three months I didn't know about eating yogurt or taking acidophilus, but ever since, I have been taking my probiotics religiously. I take femdophilus. I switched to all hypoallergenic soaps/laundry detergents since the infection began. I have abstained from sex since this infection began it hurts to insert anything at all. I use pads, but anytime I get an exam or am given medicine that involves applicators, it hurts so much. All paps normal. No STDs. Had a physical and I appear to be completely healthy. I am only 22 and I know my immune system is in good shape because I hardly ever get sick. Maybe once a year, but I usually go several years without being sick. I wear only cotton underwear and try not to wear any when I sleep.

Is it possible that one 5-7 day course of Cipro really devastated my good vaginal flora so much that after nearly 2 years, tons of probiotics and antibiotics, that it can't recover? I would think after so long my body could fight it off. I just don't understand and I am getting so desperate! This has put such a strain on my relationship. My bf has been sticking with me this entire time, but we have not had a sex life at all. I feel like all I ever do is cry and I am sick of it! Anyone have any ideas?

[sqeedge]

Also, sorry this posted twice. My browser has been acting up, guess I clicked it more than once

[Sherri90049]

Oh my! You have certainly been through some ordeal! I am so sorry! I have heard of people battling BV like that, but I think yours is the worst I've heard. I did battle it for a time several years ago. I remember being given a few antibiotic courses which never did help. And frequently antibiotics do more harm than good any way! I'm glad to hear you have started acidophilus regularly. That will help alot. The one other thing I read over and over that's supposed to help alot is folic acid. But the dose should be higher, like 1,600mcg-2,400mcg a day. (They usually come in 800mcg tablets, so you could take one 3 x a day.) I think that was one thing that did really help me. Good luck! I hope it goes away soon and you can get your life back!  

[sqeedge]

Thank you for the response :)  I know I take a multivitamin with folic acid in it, but I'll definitely run taking a higher dosage by my doc and make sure it is ok. I'm pretty convinced antibiotics are no longer the route to go, so it's pretty much time for any sort of herbal or natural remedy thing.

[megancannon]

if your BV test have all come back negative then why do they keep treating you for it instead of searching for something else? If you had BV it would have show up especially as many times as you have been tested for it. Have you asked about being checked for pelvic inflammatory disease? this causes the extreme pain you describe. Obviously this is something more than a bacterial infection. Have you requested any blood test or anything? Also, maybe it would help to keep re-testing for STDs as some can take quite a while to show up on a test. After being pregnant i keep getting yeast infection and just the itch drives me crazy so i can only imagine how you are feeling. do as much research as you can, ask your doctors to explore all options. Also, if your tests come back negative for BV and they still want to put you on the medication maybe it would be best to not take it? Doctors say your symptoms sound like BV but the test is negative so they need to start searching for diseases/infections that have bv-like symptoms. good luck, hope you get some answers and feel better soon!

[sqeedge]

Well, as far as the whiff test and pH and all that are concerned, I have BV. They look under the microscope and tell me there's bacterial overgrowth....why they can't tell WHAT bacteria, I don't know. It's just that no bacteria are growing out when cultured. Doesn't necessarily mean bacteria isn't the culprit, I might just have something that is too sensitive to grow out the normal way they culture things. However, regardless as to what bacteria it is, I really should have responded to either Flagyl or Clindamycin all these times.

If it is PID, wouldn't the doc have told me that from the ultrasound? As far as I know, it is just a vaginal infection and hasn't spread (knock on wood). At first they thought it was maybe an autoimmune thing, but the steroids made it 20x worse instead of helping so they said it wasn't.

I don't know what kind of blood test to ask for. I have asked that my hormones be checked, but all the doctors insist that since I am 22 I can't possibly have any hormonal imbalance. I did have a Vitamin D deficiency and need to go get my levels rechecked. After taking the Vit D supplements for a few months I have noticed a slight decrease in discharge and odor, but it still hasn't gone away and there is still bacterial overgrowth.

Someone on another forum had mentioned getting a PCR test where they can find the DNA of the bacteria supposedly? I guess that is what I would need done, but again, I should have responded to the meds so I don't know if I just caught something super resistant some how or what.

As you said, I feel like they have to be missing something, but I am certain I have no STDs and my latest papsmear from last month was fine, again.

Thank you all for answering. Much easier to deal with this when I can talk openly to others about it and start racking my brain about what to do next :)

[babygirlabby]

you may want to ask about interstitial cystitis.  i have it and it took 5 years to diagnose.  good luck.