My va-jay-jay is bedazzled with pain.
March 30, 2011 4:46 PM Subscribe
I've had some on-and-off pain in my pelvic area and vulva for over a year, and coincidentally (or, so says my PCP), I've also had two abnormal pap smears and an abnormal colposcopy. I don't understand how this is a coincidence. This will be a little NSFW.
I'm not sure exactly when it started, but I was experiencing some issues with very mild UTIs and irritation a little less than a year and a half ago. My SO and I were starting to think about birth control options other than condoms, so we both got ourselves checked out to make sure that we were both OK. Fortunately, we were both spic-and-span as far as STIs, but my pap came back abnormal with LSIL-type cells. My doctor (PCP) ordered a colposcopy, and the performing doctor (a GYN) ended up seeing cells and took a biopsy of my cervix. The doctor said that she thought it would clear up on its own and told me to get another pap smear in 6 months.
The irritation continued and, at times, got worse. I told my PCP about my irritation, and she said that she saw nothing on my vulva or in my vagina that would be causing irritation and felt nothing in my pelvic region, and she told me to use gentle products (detergent, etc) down there. I've been doing that for at least 6 months with no change. I do not have any other UTI or bacterial infections (we checked for that a bunch of times throughout the process).
About a month ago I finally had another pap smear with my PCP. It came back abnormal again, this time with "ASCUS" cells. I tested negative for HPV, so my doctor advised me to have another pap smear in a year. This information was in a LETTER I received from my doctor. I am not pleased that this diagnosis was mailed to me as it is very hard to get her on the phone, and I of course have many questions.
Specifically, the irritation is along the clitoris and inside the vagina. It is worse on some days than it is on others, even when I am wearing the same kind of pants/underwear (cotton) and using the same (gentle) products. The irritation is not caused by sex but is sometimes made worse after sex. Masturbation does not usually cause or worsen the irritation (it doesn't normally involve direct-clit contact). When I first start my period and begin wearing tampons, it is painful to insert or remove them. Disposable pantyliners also sometimes irritate my vulva. The pain in my pelvic area is normally a dull cramping pain and is felt all throughout the month. My periods have also been lasting longer with more "old blood" toward the end.
I can't imagine that this is all a coincidence. I am considering seeing a new GYN/PCP, but new appointments usually book up in advance. I'm checking here for some sanity and advice before I see another doctor. My PCP doesn't seem concerned at all from her letter. She knows all that I've explained above. I find it hard to believe that, after this year, she would simply mail this out to me without speaking to me about it.
What are the odds that this is all related? What could it be? What are ASCUS cells and what does this mean? I haven't been freaking out too much about this, but when the irritation gets worse, so does the worry. Thanks, and I'll drop in to answer questions you might have.
I'm not sure exactly when it started, but I was experiencing some issues with very mild UTIs and irritation a little less than a year and a half ago. My SO and I were starting to think about birth control options other than condoms, so we both got ourselves checked out to make sure that we were both OK. Fortunately, we were both spic-and-span as far as STIs, but my pap came back abnormal with LSIL-type cells. My doctor (PCP) ordered a colposcopy, and the performing doctor (a GYN) ended up seeing cells and took a biopsy of my cervix. The doctor said that she thought it would clear up on its own and told me to get another pap smear in 6 months.
The irritation continued and, at times, got worse. I told my PCP about my irritation, and she said that she saw nothing on my vulva or in my vagina that would be causing irritation and felt nothing in my pelvic region, and she told me to use gentle products (detergent, etc) down there. I've been doing that for at least 6 months with no change. I do not have any other UTI or bacterial infections (we checked for that a bunch of times throughout the process).
About a month ago I finally had another pap smear with my PCP. It came back abnormal again, this time with "ASCUS" cells. I tested negative for HPV, so my doctor advised me to have another pap smear in a year. This information was in a LETTER I received from my doctor. I am not pleased that this diagnosis was mailed to me as it is very hard to get her on the phone, and I of course have many questions.
Specifically, the irritation is along the clitoris and inside the vagina. It is worse on some days than it is on others, even when I am wearing the same kind of pants/underwear (cotton) and using the same (gentle) products. The irritation is not caused by sex but is sometimes made worse after sex. Masturbation does not usually cause or worsen the irritation (it doesn't normally involve direct-clit contact). When I first start my period and begin wearing tampons, it is painful to insert or remove them. Disposable pantyliners also sometimes irritate my vulva. The pain in my pelvic area is normally a dull cramping pain and is felt all throughout the month. My periods have also been lasting longer with more "old blood" toward the end.
I can't imagine that this is all a coincidence. I am considering seeing a new GYN/PCP, but new appointments usually book up in advance. I'm checking here for some sanity and advice before I see another doctor. My PCP doesn't seem concerned at all from her letter. She knows all that I've explained above. I find it hard to believe that, after this year, she would simply mail this out to me without speaking to me about it.
What are the odds that this is all related? What could it be? What are ASCUS cells and what does this mean? I haven't been freaking out too much about this, but when the irritation gets worse, so does the worry. Thanks, and I'll drop in to answer questions you might have.
Response by poster: Yes, I have been tested for yeast infections. I also asked her to test me again on the last pap, and I guess I was clear.
posted by your mom's a sock puppet at 4:58 PM on March 30, 2011
posted by your mom's a sock puppet at 4:58 PM on March 30, 2011
IANAD
I would greatly consider a new doctor. Your current PCP might be well justified in not worrying from a medical or scientific stance, but sending a letter indicates a lack of caring and crappy bedside manner. You are worried about this. Your stress is up. Your doctor is paying attention to test results and not taking care of the symptoms or the patient (you.)
Get a different PCP or GYN. Consider a doctor with a D.O. who might be more in tune to take care of you, not just test results.
ASCUS cells are "atypical squamous cells of undetermined significance." It is a crappy diagnosis in that it means the cervical cells are abnormal, but it doesn't really mean much of anything. It's termed a "mild abnormality" in most cases. The common course of action is more frequent PAP's to watch for things like cervical cancer. The cells are caused by anything from irritation to HPV to any host of causes.
posted by Mister Fabulous at 5:00 PM on March 30, 2011 [1 favorite]
I would greatly consider a new doctor. Your current PCP might be well justified in not worrying from a medical or scientific stance, but sending a letter indicates a lack of caring and crappy bedside manner. You are worried about this. Your stress is up. Your doctor is paying attention to test results and not taking care of the symptoms or the patient (you.)
Get a different PCP or GYN. Consider a doctor with a D.O. who might be more in tune to take care of you, not just test results.
ASCUS cells are "atypical squamous cells of undetermined significance." It is a crappy diagnosis in that it means the cervical cells are abnormal, but it doesn't really mean much of anything. It's termed a "mild abnormality" in most cases. The common course of action is more frequent PAP's to watch for things like cervical cancer. The cells are caused by anything from irritation to HPV to any host of causes.
posted by Mister Fabulous at 5:00 PM on March 30, 2011 [1 favorite]
I too think you should see another doctor, specifically an ob/gyn. They are more familiar with this type of problem, and may be more likely to help you with something like this.
posted by annsunny at 5:08 PM on March 30, 2011
posted by annsunny at 5:08 PM on March 30, 2011
Most doctors' offices send out letters these days, especially for these very routine test results. I wouldn't read too much into that in itself.
However, it sounds like you're not getting what you want from your PCP, so definitely try to find an OB/GYN, if possible one who specializes in vulvodynia or pain issues. Good luck.
posted by chesty_a_arthur at 5:11 PM on March 30, 2011 [1 favorite]
However, it sounds like you're not getting what you want from your PCP, so definitely try to find an OB/GYN, if possible one who specializes in vulvodynia or pain issues. Good luck.
posted by chesty_a_arthur at 5:11 PM on March 30, 2011 [1 favorite]
ASCUS are Atypical Squamous Cells of Undetermined Significance
You have some abnormal cells. The fact that your HPV results are negative does not mean that you do not have any HPV in your cells, since there are more than 100 different PVs. The Digene test commonly performed only detects a portion of these papilloma viruses, including all of the high risk. You might have some of the low risk ones.
Usually the test is not recommended for women younger than 30, because the body is able to resolve most of the infections on its own. Your physician should have explained that when you were told that the results were negative. Get yourself a different physician stat, because the itching is a symptom of something other: HPV infections are silent.
posted by francesca too at 5:11 PM on March 30, 2011 [1 favorite]
You have some abnormal cells. The fact that your HPV results are negative does not mean that you do not have any HPV in your cells, since there are more than 100 different PVs. The Digene test commonly performed only detects a portion of these papilloma viruses, including all of the high risk. You might have some of the low risk ones.
Usually the test is not recommended for women younger than 30, because the body is able to resolve most of the infections on its own. Your physician should have explained that when you were told that the results were negative. Get yourself a different physician stat, because the itching is a symptom of something other: HPV infections are silent.
posted by francesca too at 5:11 PM on March 30, 2011 [1 favorite]
Pleas see an OB/GYN or a gynecological nurse practitioner; either one should be more engaged in helping you find some solutions than your PCP appears to be.
posted by scody at 5:23 PM on March 30, 2011 [1 favorite]
posted by scody at 5:23 PM on March 30, 2011 [1 favorite]
Have you looked into interstitial cystitis at all? When you say irritation, do you mean any sort of burning/stinging pain, or is it always a dull cramp? I have IC, mainly in the urethra, and it produces pain (for me, a burning) that sometimes refers to the clitoral and vaginal area. Not sure if this applies to you, but wanted to point it out just in case!
posted by tetralix at 5:24 PM on March 30, 2011
posted by tetralix at 5:24 PM on March 30, 2011
(oh, and it's often that case that you may be able to see a nurse practitioner sooner than an OB/GYN -- so even if you ultimately do need to see the OB/GYN, the NP can help get the ball rolling for you in the meantime.)
posted by scody at 5:25 PM on March 30, 2011
posted by scody at 5:25 PM on March 30, 2011
Vulvar, vaginal, and clitoral pain is not normal and you have a right to treatment that addresses it. "Not normal" does not necessarily mean that your overall health picture is being threatened, but you currently have the wrong provider for you. I like what Mister Fabulous and francesca too have to say, as well.
Unfortunately, women are sometimes led to believe, via care processes that focus on the diagnosis and management of disease that has very defined clinical guidelines (like cervical abnormalities), that companion symptoms like you describe of their genital and pelvic health must be "lived with." That's bullshit.
I hate suggesting to folks to find a new provider, because it's such a PITA, but your picture points in that direction. In your initial appointment, tell your new provider that you have persistent and progressive pelvic, vulvar, vaginal, and clitoral pain (in addition to your cervical cell findings) and that you refuse to tolerate it, have followed care guidelines to attempt to address this pain and that the care has failed. Be ready to tell them what makes it worse or better, what it feels like, how long it's gone on, along with your menstrual and sexual history.
The thing is, there is a cultural context at play that there is something mysterious and spooky about lady parts and that some things about them just must be shouldered--wages of sin or some such utter bologna. You can get answers, you have a right to genital health, and there is nothing particular more advanced or difficult about figuring out what's going on with XX genitals than any other variety other than pushing back against ridiculous attitudes.
I am sorry you're dealing with this. My perspective on this comes, in part, from being in the medical field (nurse practitioner residency), but also as a patient. For YEARS I tolerated diffuse pelvic pain and symptoms, had 'watch and wait' care guidelines passed to me, leading me to believe that I had no choice but to tolerate that stuff. Finally, I had an awesome provider and one day I just told her 'I'm done. I refuse to hurt another day.' And she was all 'why the hell should you? Let's get this taken care of.' She ran me through the battery, which sucked, but I finally, finally, got an accurate diagnosis as well as relief. Again, it wasn't a scary diagnosis, but if I had received it earlier, my fertility might have been spared (in MY case).
posted by rumposinc at 5:36 PM on March 30, 2011 [13 favorites]
Unfortunately, women are sometimes led to believe, via care processes that focus on the diagnosis and management of disease that has very defined clinical guidelines (like cervical abnormalities), that companion symptoms like you describe of their genital and pelvic health must be "lived with." That's bullshit.
I hate suggesting to folks to find a new provider, because it's such a PITA, but your picture points in that direction. In your initial appointment, tell your new provider that you have persistent and progressive pelvic, vulvar, vaginal, and clitoral pain (in addition to your cervical cell findings) and that you refuse to tolerate it, have followed care guidelines to attempt to address this pain and that the care has failed. Be ready to tell them what makes it worse or better, what it feels like, how long it's gone on, along with your menstrual and sexual history.
The thing is, there is a cultural context at play that there is something mysterious and spooky about lady parts and that some things about them just must be shouldered--wages of sin or some such utter bologna. You can get answers, you have a right to genital health, and there is nothing particular more advanced or difficult about figuring out what's going on with XX genitals than any other variety other than pushing back against ridiculous attitudes.
I am sorry you're dealing with this. My perspective on this comes, in part, from being in the medical field (nurse practitioner residency), but also as a patient. For YEARS I tolerated diffuse pelvic pain and symptoms, had 'watch and wait' care guidelines passed to me, leading me to believe that I had no choice but to tolerate that stuff. Finally, I had an awesome provider and one day I just told her 'I'm done. I refuse to hurt another day.' And she was all 'why the hell should you? Let's get this taken care of.' She ran me through the battery, which sucked, but I finally, finally, got an accurate diagnosis as well as relief. Again, it wasn't a scary diagnosis, but if I had received it earlier, my fertility might have been spared (in MY case).
posted by rumposinc at 5:36 PM on March 30, 2011 [13 favorites]
Specifically, the irritation is along the clitoris and inside the vagina. It is worse on some days than it is on others, even when I am wearing the same kind of pants/underwear (cotton) and using the same (gentle) products. The irritation is not caused by sex but is sometimes made worse after sex. Masturbation does not usually cause or worsen the irritation (it doesn't normally involve direct-clit contact). When I first start my period and begin wearing tampons, it is painful to insert or remove them. Disposable pantyliners also sometimes irritate my vulva.
FWIW this part, at least, is basically what I get thanks to perfume allergies and possibly other (undiagnosed) chemical hypersensitivities. I get it not just from detergent and soap but toilet paper, tampons, sanitary pads, dye on new clothing, anything else that goes anywhere near the area. If I accidentally use the perfumed handsoap at work that I'm allergic to then use the toilet, just having my hands go somewhere near while I'm wiping is enough to set off a reaction. So I buy expensive hypoallergenic toilet paper, use the only brand of sanitary pads which doesn't cause a problem, use hypoallergenic unscented detergent and bodywash everywhere, wash my hands any time they get anything perfumed on them, and avoid any novel sexy-time products.
I realise you're probably being as careful as you can already, but many people don't think of things like sanitary pads as causing a problem (and I've even reacted to supposed unscented stuff, it's really trial and error to find the one that works). Also this doesn't explain any of your other symptoms, and I agree that you shouldn't have to put up with any of it. I definitely support going to a new doctor. But I figured I'd also mention the lengths I have to go to to avoid irritation so you can consider your own regime in that context.
posted by shelleycat at 7:45 PM on March 30, 2011
FWIW this part, at least, is basically what I get thanks to perfume allergies and possibly other (undiagnosed) chemical hypersensitivities. I get it not just from detergent and soap but toilet paper, tampons, sanitary pads, dye on new clothing, anything else that goes anywhere near the area. If I accidentally use the perfumed handsoap at work that I'm allergic to then use the toilet, just having my hands go somewhere near while I'm wiping is enough to set off a reaction. So I buy expensive hypoallergenic toilet paper, use the only brand of sanitary pads which doesn't cause a problem, use hypoallergenic unscented detergent and bodywash everywhere, wash my hands any time they get anything perfumed on them, and avoid any novel sexy-time products.
I realise you're probably being as careful as you can already, but many people don't think of things like sanitary pads as causing a problem (and I've even reacted to supposed unscented stuff, it's really trial and error to find the one that works). Also this doesn't explain any of your other symptoms, and I agree that you shouldn't have to put up with any of it. I definitely support going to a new doctor. But I figured I'd also mention the lengths I have to go to to avoid irritation so you can consider your own regime in that context.
posted by shelleycat at 7:45 PM on March 30, 2011
You don't necessarily need to change doctors, you just need a referral. Your primary care doctor is not a one stop shop, when they find a problem that they cannot diagnose, their typical course of action is to refer you to a specialist in that medical area. In your case, it sounds like you need a gynecologist, and as one of the other posters pointed out, someone who specializes in vulvodynia would be best.
If you don't like your primary care doctor, then by all means, switch, but I wouldn't switch based on the fact that she doesn't think your abnormal Pap is related to your pelvic pain. Tons of people have abnormal Paps and ASCUS results, and they don't have pain with it. That's the whole reason that Paps are so important - because the problem they're looking for (cancer) doesn't have any symptoms until it's too late.
Have you directly communicated with your doctor about how much these symptoms are bothering you and how much you want to find a solution? We doctors are trained to raise our antennae when patients specifically indicate that their symptoms are affecting their 'quality of life' - I know it sounds lame, but one person's "irritation that I don't mind living with" is another person's "irritation that is killing me", and this is how we differentiate. It may be that your doctor just doesn't realize that this issue was anything more than a passing concern. If you talk to your doctor and say "This is a real problem for me that I really need to have taken care of. What is the next step?" If you get anything other than a concrete action out of that, i.e. a referral to a specialist, then I'd have to concur that you need a new PCP.
posted by treehorn+bunny at 8:32 PM on March 30, 2011
If you don't like your primary care doctor, then by all means, switch, but I wouldn't switch based on the fact that she doesn't think your abnormal Pap is related to your pelvic pain. Tons of people have abnormal Paps and ASCUS results, and they don't have pain with it. That's the whole reason that Paps are so important - because the problem they're looking for (cancer) doesn't have any symptoms until it's too late.
Have you directly communicated with your doctor about how much these symptoms are bothering you and how much you want to find a solution? We doctors are trained to raise our antennae when patients specifically indicate that their symptoms are affecting their 'quality of life' - I know it sounds lame, but one person's "irritation that I don't mind living with" is another person's "irritation that is killing me", and this is how we differentiate. It may be that your doctor just doesn't realize that this issue was anything more than a passing concern. If you talk to your doctor and say "This is a real problem for me that I really need to have taken care of. What is the next step?" If you get anything other than a concrete action out of that, i.e. a referral to a specialist, then I'd have to concur that you need a new PCP.
posted by treehorn+bunny at 8:32 PM on March 30, 2011
The V Book: A Doctor's Guide to Complete Vulvovaginal Health, by Elizabeth G. Stewart and Paula Spencer, contains some very helpful suggestions. Our local public library has it.
posted by Ery at 4:47 AM on March 31, 2011
posted by Ery at 4:47 AM on March 31, 2011
I had a similar issue. I was experiencing recurring vaginal/labial/clitoral irritation for about a year and a half. Sometimes it was better, sometimes it was worse. After repeated Dr. visits, tests and treatments for everything that might possibly be wrong, I was no better. I was afraid my pain would never improve.
Eventually, I went to a new ob-gyn who suggested pelvic physical therapy. Apparently, "tight muscles, connective tissue restrictions, neural inflammation and myofascial trigger points can cause pelvic pain."
I was a bit skeptical, as my pain felt more like infection/irritation than muscular/skeletal pain, but I was pretty much out of ideas and willing to try anything at that point.
Pelvic floor therapy was incredibly helpful for me. I still experience occasional pain, but it is much more manageable.
I know this is an old thread, but if you are still having mysterious vaginal irritation, you may want to consider pelvic physical therapy.
posted by dichotomouscupcake at 9:47 PM on January 15, 2012 [2 favorites]
Eventually, I went to a new ob-gyn who suggested pelvic physical therapy. Apparently, "tight muscles, connective tissue restrictions, neural inflammation and myofascial trigger points can cause pelvic pain."
I was a bit skeptical, as my pain felt more like infection/irritation than muscular/skeletal pain, but I was pretty much out of ideas and willing to try anything at that point.
Pelvic floor therapy was incredibly helpful for me. I still experience occasional pain, but it is much more manageable.
I know this is an old thread, but if you are still having mysterious vaginal irritation, you may want to consider pelvic physical therapy.
posted by dichotomouscupcake at 9:47 PM on January 15, 2012 [2 favorites]
This thread is closed to new comments.
This article on Salon may be of interest.
Here is an explanation of what ASCUS cells are.
My understanding is that this finding is rather common - which may be why your doctor doesn't think it's related to your pelvic pain. But that doesn't mean your pain isn't important. If it takes a long time to get an appointment with a new doc, make one now - if this all resolves on its own, then you can cancel.
Also I'd recommend you use scent-free detergent and soap on ALL your clothes and body products, not just area-specific ones.
posted by bq at 4:56 PM on March 30, 2011 [1 favorite]