[amelillo13]

I've been racking my brain lately trying to figure out what is wrong with me since all my Doctors have seemed to give up.

Has anyone ever been told that they have Bacterial Vaginosis, but cultures taken of say, discharge, never grow anything out? Is it possible to have a bacterial infection but not have any sort of growth?

I've always had excessive WBC, but NOTHING grows out and I'm starting to wonder if maybe this isn't a bacterial problem at all. I've had numerous doctors send out cultures for: anaerobic + aerobic bacteria, yeast, fungi, etc; been tested for all STDs. Everything is always negative. Papsmear was normal. They have also checked my urine and nothing grows out there either. I use all hypoallergenic soaps/detergents, cotton underwear, eat yogurt. I'm not on any medications.

Something just doesn't seem right to me. I've been treated numerous times for BV but if no bacteria grows out, how the heck are they treating me, or why are they even bothering? It's been a year and a half and I have been on every medication you can think of. I'm getting sick of putting my body through this. I don't use tampons and neither I or my boyfriend ever recall a condom breaking or slipping out. We've abstained for a year and a half, since this "infection" started.

My problem also started after I was on a round of Cipro for a UTI. I know UTIs are caused by bacteria. I didn't develop this discharge until after I was done with the meds. UTI was gone, but I was left with this. I don't think the Dr. that diagnosed the UTI ever had the urine cultured, I think they just dipped it and send me home with meds. If I could have known what bacteria caused that, maybe it is still causing this supposed vaginitis? Maybe it was just a coincidence that I had a UTI right before this started. I don't know.

Anyone have any ideas or suggestions on what to explore?

[amelillo13]

I should also add that back in July 09 I had a vaginal ultrasound done. I don't know if anything can change that quickly or what, but that Dr. said I was very inflammed but my ovaries and stuff looked fine. He couldn't view my left ovary, however, and didn't want to push any further for fear of knocking into..what's on the left side, descending colon I guess?

Also, something very weird happened yesterday. My periods have been very painful since this whole thing began. However, I also stopped taking my birth control pills once this infection started because I didn't want it to interfere with anything so it MAY be because of that. Anyway, I got my period at the very end of april, it ended about may 3rd. I usually get 3-4 days of brown blood discharge, old blood making it's way out.

However, for every single day since, I was getting this black speck/clump discharge. After about 3 weeks, I talked to a nurse and she said I needed to be seen. I saw my gyno yesterday and she did an exam, and once she put in that metal clampy thing, she pulled out this like 4 inch long black clump of stuff. She asked me what it was and I said I didn't know, but that was the sort of discharge I was seeing, only it was either specks or dime sized, not as big as what she took out. She said she had no idea what it was. I think she just threw it out instead of sending it to a lab. If I wasn't crying from the pain of the exam that I could hardly tolerate, I would have remembered to ask her about that.

I assume it was just a very large clot? I don't understand how it got so big and why/how it was stuck, but perhaps it is related to whatever is going on with me or something. Anyway, she took that out yesterday and I started my period today. Just a very weird thing I have never had happen before.

[lafemelle]

I've been following your posts, and you seem to be in the same boat I am (similar symptoms), and I've had this "mystery" problem for over 2 years now. Only difference is, I don't have any of the black stuff you describe. I *do* find it incredibly odd your doctor didn't make a bigger deal out of it!

Anyway, I do have to ask--and sorry if you've mentioned this before and I overlooked it--have you been tested for HPV? Or have you had a biopsy done on your vaginal tissue?

I had a biopsy back in November, where my doctor found VIN1 (which isn't even anything you normally have to worry about). I've seen another doctor AND a specialist since then--my appt. with the specialist was yesterday--and the conclusion now is that I have HPV and my body has been unable to fight it off naturally like most women's bodies do, and therefore I will have these infectious symptoms until we've successfully removed the affected tissues AND fought off the virus itself. I just wonder if it's anything you've been looked at for, because usually it wouldn't cause symptoms like ours but in rare cases (like mine, apparently) it does. And no amount of antibiotics or lifestyle changes will help it until you combat it from every direction and get rid of it completely.

[amelillo13]

I've been following your posts, and you seem to be in the same boat I am (similar symptoms), and I've had this "mystery" problem for over 2 years now. Only difference is, I don't have any of the black stuff you describe. I *do* find it incredibly odd your doctor didn't make a bigger deal out of it!

Anyway, I do have to ask--and sorry if you've mentioned this before and I overlooked it--have you been tested for HPV? Or have you had a biopsy done on your vaginal tissue?

I had a biopsy back in November, where my doctor found VIN1 (which isn't even anything you normally have to worry about). I've seen another doctor AND a specialist since then--my appt. with the specialist was yesterday--and the conclusion now is that I have HPV and my body has been unable to fight it off naturally like most women's bodies do, and therefore I will have these infectious symptoms until we've successfully removed the affected tissues AND fought off the virus itself. I just wonder if it's anything you've been looked at for, because usually it wouldn't cause symptoms like ours but in rare cases (like mine, apparently) it does. And no amount of antibiotics or lifestyle changes will help it until you combat it from every direction and get rid of it completely.

The last time I had a papsmear was in July of 2009. I called the office and they said it came back normal. I asked them if they tested me for HPV and they said no, because if the pap comes back normal, there is no need to test. They said they only test for HPV if abnormalities are found.

I'm scheduled for my yearly pap in a couple months, and I will bring that up and ask them to test regardless. I was under the assumption that was how it worked, they tested everyone anytime you had a pap, but apparently not....or maybe it was just that Doctor's office?

A doctor I am currently seeing has discussed doing a biopsy. However, the last time I saw him which was back in early april, he said he didn't feel it would help with a diagnosis and didn't want to put me through the pain.

I feel like at this point, all I have left are the painful tests to help rule things out. I'm getting a bunch of blood work done tomorrow to make sure I don't have an auto-immune thing going on, and to make sure my hormones aren't out of whack. Even though I did have an ultrasound a year ago, endometriosis has effected women in my family (both grandmothers) and my sister has PCOS. I don't know how long it takes problems like that to show up, but something is definitely wrong.

That Dr. I saw yesterday took out that black stuff, and lo and behold: today I got my period and I have been in excruciating pain, as always. I'm beginning to wonder if there is just something stuck somewhere that no one has been able to see, like toilet paper or something? and maybe my body is just attacking itself trying to rid of it. My mother wants me to ask the doctor about the possibility of a messed up pregnancy, even though back when I was sexually active in 08 I was on BC and we used condoms most of the time in addition to it. But I guess her thinking is that tissue from something like that could be stuck somewhere. I think it sounds a little farfetched honestly, but at this point, I'd consider testing for anything.

[amelillo13]

Also, I'm not sure if I ever mentioned it on this board (I post all over the place and lose track) but the longest I ever went without symptoms was like 3-4 weeks and that was after I had my 2nd cryosurgery. The doctor I was seeing at the time, this was in march of 09 so right after my GP finished treating me for the UTI and trying to treat me for BV, I went to a gyno who said I had cervicitis and did 2 cryos. I never got a second opinion, I just went ahead and did them (one was in march 09 and the other june 09). I've had numerous other doctors look at my cervix and they all say it looks fine, but I mean I've had those procedures done, so of course it would...now.

I wish I would have gotten a second opinion before I went ahead w/ the surgical procedures to see if there really was something wrong with the cervix, but someting like HPV would make sense for that too...causing inflammation and making my cervix look weird IF it did. I'd hate to think of cauterization as a long term solution to this because man, that was painful. And I have my doubts about that doctor as he seemed to just want the insurance money for the procedures. Who knows.

[lafemelle]

Actually, I have NEVER had an abnormal pap smear. That was something I asked the specialist about yesterday, and she explained that if the HPV isn't directly affecting your cervix it won't cause an abnormal pap--that pap smears don't check for abnormalities in the vaginal walls, for instance, which could be where the root of my problem is. So maybe it's at least worth mentioning to your doctor that you'd like to be tested, just in case. If you test for it, it could either lead you in the right direction or eliminate the possibility altogether...either way, it would be helpful in the long run.

[amelillo13]

Actually, I have NEVER had an abnormal pap smear. That was something I asked the specialist about yesterday, and she explained that if the HPV isn't directly affecting your cervix it won't cause an abnormal pap--that pap smears don't check for abnormalities in the vaginal walls, for instance, which could be where the root of my problem is. So maybe it's at least worth mentioning to your doctor that you'd like to be tested, just in case. If you test for it, it could either lead you in the right direction or eliminate the possibility altogether...either way, it would be helpful in the long run.

I agree. Thank you for the suggestion

[Sarah001]

I too have been following your posts amelillo13, I would have thought if there was any abnormality of bacteria it would have shown on the culture so perhaps bv isn't the issue after all. I also would think if something had been stuck inside you for a long time it would have caused much more severe symptoms so perhaps what the doctor removed was just a large clot?

As far as I know it's unusual for HPV to cause such symptoms and I personally would be extremely reluctant to have tissue removed if that was the case, I'd push for the drugs they now use that boost the immune system and should clear HPV if that's the problem.

You mentioned you found the examination painful, can I ask where the pain is? Is it internal or near the vaginal opening? Do you have any visible red patches of skin near the vaginal opening?

I've had the whole cultures, swabs etc done too and mine show nothing either. I once tested positive for very mild bv but that cleared up without treatment so bv isn't my problem either. I've just had the blood tests to check for autoimmune antibodies (not just for a gynae reason, I have other issues too) but don't have the results yet and I'm waiting for a referral to a dermatologist to have a biopsy taken as I have inflamed skin just outside of the vagina. Like you though mine started with a UTI and there's no reason I can think of for the soreness to continue.

[amelillo13]

I too have been following your posts amelillo13, I would have thought if there was any abnormality of bacteria it would have shown on the culture so perhaps bv isn't the issue after all. I also would think if something had been stuck inside you for a long time it would have caused much more severe symptoms so perhaps what the doctor removed was just a large clot?

As far as I know it's unusual for HPV to cause such symptoms and I personally would be extremely reluctant to have tissue removed if that was the case, I'd push for the drugs they now use that boost the immune system and should clear HPV if that's the problem.

You mentioned you found the examination painful, can I ask where the pain is? Is it internal or near the vaginal opening? Do you have any visible red patches of skin near the vaginal opening?

I've had the whole cultures, swabs etc done too and mine show nothing either. I once tested positive for very mild bv but that cleared up without treatment so bv isn't my problem either. I've just had the blood tests to check for autoimmune antibodies (not just for a gynae reason, I have other issues too) but don't have the results yet and I'm waiting for a referral to a dermatologist to have a biopsy taken as I have inflamed skin just outside of the vagina. Like you though mine started with a UTI and there's no reason I can think of for the soreness to continue.

It may have just been a huge clot. I don't understand why she would say "I have no idea what this is" and then just throw it out instead of having it examined though.

As for my pain, it is internal. Everything on the outside looks fine. According to most of the doctors I've been to, the tissue on the inside actually looks healthy too, it's just covered in the discharge =/

Some days, for whatever reason, I am more irritated than others, get more discharge, etc. So, most of the time, it hurts to have anything inserted. That's actually how I found out about the UTI back in 09. I tried to have sex and my partner couldn't enter so I went to the doc and found out I had a UTI...also by the time I put two and two together I had kidney pain, along with fever and chills. I tried having sex one time since the "BV" infection started, and that was last month because my symptoms went away for 4 days and that was the longest span I've had. However, same problem. Tons of pain when he tried to insert. I mean, I know some of that has to do with the fact that I haven't had sex in so long, but whatever is wrong with me is causing further irritation for some reason.

[Sarah001]

Is it possible your pelvic floor is in spasm? I know this sounds odd but it can cause all sorts of disruptions to the area and would hurt with penetration. I'm looking into that angle myself because believe it or not it can even cause visibly sore skin just outside the vagina. Anything that causes problems in the vagina can create excessive discharge, if it's not infectious and there's no sign of inflammation perhaps that's an option? It's awful being a "medical mystery" isn't it?