[missbutterfly]

missbutterfly, did/does your friend with CV have any pain with intercourse or general insertion?

I'm not sure without calling her maybe you can find some of the symptoms online, just know that you don't have to be a text book case for something.

Don't forget there is also vulvodynia and vulva vestibulitis which get missed on diagnosis a lot too.

What suggested her doc to CV was that her wet mount and ph was very obvious.

[missbutterfly]

I also should just throw out there.. endometriosis just because the amount of VARIOUS symptoms you can get with it or so wide spread you never know. And only a laproscopy will tell you. And well throw out there Interstitial cystitis only cause this started with a UTI, unsure if your urinating painful. Anyways I think you will get down to the bottom of this eventual I've thrown out some various ideas for you though among this thread.

[amelillo13]

I appreciate it. Thank you =)

[lafemelle]

Yes, thank you for all the information. Missbutterfly, you may not know but I figured I'd ask...does your friend with CV still have really heavy discharge, even while "managing" the condition? You'd mentioned she has to go in to test for yeast and BV every few months because she can't tell between having them and not having them. That sounds incredibly discouraging, like she wasn't even able to alleviate her symptoms at all.

I like the idea of something new to look into, but at the same time when it's something like this it just reiterates my fear that I'll be suffering from this for the rest of my life. =(

[missbutterfly]

[QUOTE=lafemelle;243328]Yes, thank you for all the information. Missbutterfly, you may not know but I figured I'd ask...does your friend with CV still have really heavy discharge, even while "managing" the condition? You'd mentioned she has to go in to test for yeast and BV every few months because she can't tell between having them and not having them. That sounds incredibly discouraging, like she wasn't even able to alleviate her symptoms at all.

Well from what I know she is still discharge and itching redness etc..but easing a bit with the more sitz she does but it is def CV upon mount and ph. There is no true treatment but sitz bath. She manages the condition right now its still fair new for her maybe with enough sitz itll go away never know to each there own but at this point I know that she deals with this and basically she just has chalked it up to a condition she may or may not ever rid. The good news CV is not a infection it's more a imbalance problem, so its nothing thats going to damage her overall health its just more a headache than anything and bothersome. She doesnt use anymore creams or drugs it makes CV worse by knocking the balance out even further. She says though that she was on meds for so long so maybe right now her CV is just really bad, but after more balancing sitz baths maybe it will totally calm out in time, again CV is disturbed the more creams and drugs you use on it.She cannot tell the difference between yeast or BV, but usual or so far when she goes in every few mths its just her typical CV and no yeast or BV. CV was only discovered in the 1980s so your not going to expect some huge discovery medical fix for it at this stage but what they already know to do is the sitz baths. The good news is its a diagnosis now and she doesnt have to keep putting her body through drug abuse. Hope that helps you some! If you guys have any questions just put them up here and Ill call her this weekend and get them answered for ya cause we talk most weekends anyways.

[missbutterfly]

She was recommended this guy but couldnt pay the price and found someone in NY but this guy can diagnosis CV and other rare gyno conditions. This guy can figure you ladies out it won't hurt to take a little road trip! She would like to see him in the future if her CV doesn't balance out properly with her sitz baths. He specializes in CV and other rare gyno conditions she has heard. I don't have a number maybe can look it up on the John Hopkins website. I don't know if he really does specialize in it but she heard that he can help.

Dr. Richard Marvel at Johns Hopkins- Baltimore

[CVSTINKS]

Hello everyone my name is Jade or CVSTINKS. I have come to join in after an email from missbutterfly that I should come on board. My problem started 10 years ago, after a UTI infection and treatment with Cipro. I have Cytolysis Vaginitis, Vulvitis, and Vaginismus. The doctor in New York was able to pinpoint all three. I have finally accepted my diagnosis and conditions after ten years.

They don't have a magic pill but they are able to be at least managed and they are not infections nor will they affect my health.. My doctor told me on the CV aspect that for some women it is long term and other's it's not you can get it balanced but it can come back so keeping up with your sitz bath is important, but not to over do the sitz.

I see a pelvic doctor for my other condition. The key for me was to accept and now move forward. I do not know what each of you have but I do want to say that it could be more than one thing or it could just be all under one umbrella. To be honest my first doctor mentioned Vaginismus and I didn't want to believe it because I had discharge, and I thought it was going to be something really strange and rare. Come to learn years later I did have that but also CV which was rare. I ended up with a not so rare and rare problem. When you feel the diagnosis is right you can accept and move forward.

I have put it all in perspective. I'd rather have this than PCOS or Endo cause at least I am fertile. I hope you all find a doctor that will get down to the problem so you can accept and heal or manage in whatever way you can.

I have heard that Dr. Marvel can figure out these conditions and get down to business. This information about him was only handed down to me through someone else, so you can always call.

[amelillo13]

My problem started 10 years ago, after a UTI infection and treatment with Cipro.

This is EXACTLY how my problem started. Had a severe UTI for the first time in my life, was put on Cipro and it got rid of the UTI but left me with this terrible vaginosis I can't get rid of.

May I ask what your symptoms were when it started? Did you have discharge? Pain? Something else?

[lafemelle]

CVSTINIKS, thanks so much for joining the forum! You must know what kind of torment we're all going through. I'm probably going to end up visiting a specialist 8 hours away to get to the bottom of this, but at my appointment later this month with my regular doctor I'm definitely going to mention CV.

I do have some CV-related questions, and I'm not sure if CVSTINKS or ItsASecret or anyone can answer them, but here goes:

1. Over the past 3 years, whenever I've had my pH tested it's been "normal." Since CV seems to be an imbalance, is it possible for someone to still have it if they have a perfectly pH-balanced vagina?

2. If CV involves too many lactobacilli, then wouldn't all these antibiotics we've been prescribed be killing them off and ending the problem? And wouldn't we all be yeast-infection free? I guess I'm trying to understand WHAT the condition actually is and why it's possibly affected by all these medications/creams we've been on.

[r3dh3ad]

Well everthing is back to "normal" for me. Discharge, redness and puffiness, which I was expecting anyway. I have seen web sites on CV and even though my ph is not too low - or too high for that matter- I tried the baking soda sitz baths and douching for two weeks ( can't remember when exactly) But I had no change. I was'nt diagnosed just one of those things I saw on-line and tried. Perhaps the Augmentin is worth a try, though. So if the doctor could see too much lactobaccilus- does the ph Hve to be too low for a diagnosis? Guess this means another trip to the physician..........