How to get tested without being treated as crazy
July 24, 2017 5:41 AM   Subscribe

How to find someone who can effectively treat vaginal itching that is neither bacteria nor yeast per the tests?

I'm 40, female, overweight. In the past I have had yeast infections and bacterial vaginosis. I've been treated, have gotten better, and it has recurred (either BV or yeast, or one time it was both at once), more times than I can recall. Recently I've had itching and fishy odor. My gyno tested me for BV and yeast, both came back negative. She basically told me to wear cotton underwear, dry completely after showering, never douche, all the advice that I've already been following to the letter for years, and I continue to follow it. But she basically told me there is nothing more she can do, because she can't prescribe something if she doesn't have a specific infectious agent to match the prescription to, and I get that, but when I asked what specialist might have the right test, she recommended a psych eval.

I've been to therapy for years for depression/anxiety, which turned out to be complex PTSD from life events that are completely unrelated to this. And I'm basically fine now, with lots of coping skills. I went back to my psychologist after the gyno visit, just to see if there was any good reason this could be psychological issue, and my psychologist was furious at the doctor and said this is clearly medical, and I need to get a second opinion.

Meanwhile, just in the past couple of days, I have begun seeing small blue threads on the toilet paper after I wipe. I can't be sure if it's in the urine or the vaginal discharge, but I know it's not from the tp because this just started recently (same batch of tp). And it can't be from my underwear which are white or nude. I tried using a white wash cloth in the shower, instead of the usual burgundy or brown, and when using it to clean my vulva, it came away with several tiny blue fibers on it. I tried to think of anything else that may have been inserted into my vulva or vagina, and nothing. No sex of that type in recent months, no tampons. Certainly nothing medium-blue and fuzzy.

I started googling and discovered that itching and seeing blue fibers means I'm likely suffering from Morgellon's disease? But I don't believe in chem trails or homeopathy or anything woo. And yet if I try to take the most logical approach I can think of, which would be to bring a sample to someone who can test it, apparently I will be marking myself as a crazy believer of woo.

How to find a medical professional who will take this seriously? Again, I'm an overweight woman, so I've got that going for me. And again, it's neither BV or yeast per the tests, so is there even a test for this? If not, what alternatives do I have?
posted by anonymous to Health & Fitness (29 answers total) 9 users marked this as a favorite
I think you should see another obgyn. It's ok to get two or three opinions on this. Don't be put off because one doctor is not helping right now. Doctors have bad days and bad calls too.
posted by Kalmya at 5:50 AM on July 24, 2017

I'm not gonna start on the blue fibers bc I have no idea on that, but do you think the itching could be related to the tp you use? Have you tried organic/non-chlorine bleach tp? Not to be a hippie, but I have weird sensitive skin and parts and the organic tp really helped my itching (I use the Seventh Generation kind). (cf. this medical case study.)
posted by leesh at 5:51 AM on July 24, 2017 [1 favorite]

Do you wear blue jeans? Sometimes the fuzz can transfer.
posted by raccoon409 at 5:51 AM on July 24, 2017 [5 favorites]

Morgellon's disease is still not clearly established science, so I'd be very careful with anything you read about it that's not in a well-respected medical journal. Most people diagnosed with Morgellon's are determined to be having some form of psychological delusion.
This probably sounds dumb, but what's your laundry setup? I used to have horrific reactions to the dryer sheets, especially in areas that tended to get warm, like armpits and crotch. If you're using dryer sheets, quit for a while, and try a different brand of detergent too, something fragrance free and "natural" as possible.
posted by cosmicbandito at 6:11 AM on July 24, 2017 [6 favorites]

Yes, it could be an allergy. I'm allergic to pantyliners and pads and soap with fragrance. The itching is the worst.
posted by Stonkle at 6:19 AM on July 24, 2017

Other than the blue bits, this is exactly the experience I had that made me realize that my vulva had decided that it hates laundry detergent. After months of tests and antibiotics and creams, I tried washing my underwear with just hot water. No detergent. No dryer sheets. (Yes. This sounds like it could be disgusting. It's been years now. Things don't smell and all seems clean to me.) Within days, the itching and smell stopped. The one time I wore a pair of underwear that ended up in the detergent wash, I immediately started back with the itching.

Maybe it's psychosomatic? I don't care. it stopped and I'm happy.
posted by mcduff at 6:28 AM on July 24, 2017 [3 favorites]

Have you tried to move to perfume and dye free soaps, lotions, and detergents?
posted by k8t at 6:37 AM on July 24, 2017

Are you sexually active with a man and/or on any birth control (including condoms). Itching could be an allergic reaction to either semen or your bc. Both are possible although I would think your doc should have suggested if it could be an issue.
posted by john_snow at 6:48 AM on July 24, 2017

I went back to my psychologist after the gyno visit, just to see if there was any good reason this could be psychological issue, and my psychologist was furious at the doctor and said this is clearly medical, and I need to get a second opinion.

Just for the sake of communication with any doctors, if they are competent, this is also what they think -- psychiatry is a medical specialty. and is what they mean by a psych consult; they will not take a psychologist's opinion as a substitute (and shouldn't.)

A second or third opinion from another gynecologist would be my first step, but if you can afford a consult with a psychiatrist who is reputed to be reasonable, it might be helpful to be able to cut off other doctors who suggest seeing one by telling them you already have. They do have actual medical training, and there's certainly a chance they'll have heard of something weird and purely physical that another doctor hadn't thought of, and be able to direct you to another specialist if they can think of one that could help.
posted by queenofbithynia at 6:58 AM on July 24, 2017 [1 favorite]

When I wear new jeans (even after washing, but especially if I wear them before washing) I get blue fibers everywhere, and sometimes my sweat is bluish. Also, if I wash towels with clothes, my towels get tiny clothes fibers embedded all over. I don't think dye or fibers transferring to vaginal fluids, or dye or fibers hiding in all the little tiny hiding places we have in that area is far-fetched.

I do think odor/itching is worth getting checked out, regardless of the blue fibers. Maybe a gyno who specializes in derm issues?

Also, even if your physical issues turn out to have psychological origins, it doesn't mean you're crazy and it still deserves treatment.
posted by kapers at 7:33 AM on July 24, 2017 [2 favorites]

Please get a second opinion from an Ob/Gyn. Use the phrase "this is impacting my quality of life and I want to work together to get a handle on the symptoms while we investigate the causes" or something similar. If you can't get a second opinion for reasons, go back to your Ob/Gyn and use the the same phrase ("this is impacting my quality of life.")

It's unacceptable that she sent you away without help to manage the symptoms. I'm sorry this happened to you.
posted by CMcG at 7:34 AM on July 24, 2017

Seconding checking your laundry soap. Strong laundry soap gives me the symptoms of BV or a yeast infection without the actual infection.
posted by Ms. Moonlight at 8:40 AM on July 24, 2017

Morgellon's disease is still not clearly established science

Understatement. If you go in to see a doctor telling them you think you have Morgellons, you're probably just going to get another psych referral out of it.

Did your ob/gyn run the tests only once? There is such a thing as a false negative. A doctor offering a second opinion should repeat the tests.
posted by praemunire at 9:24 AM on July 24, 2017 [3 favorites]

Agree that you should see a different gynecologist who is more willing to work with you. If that fails, I have had success in changing my vaginal bacteria profile by:

Inserting a sea sponge soaked in vinegar
Inserting a sea sponge soaked in yogurt
Inserting a garlic clove cut in half
Going off hormonal birth control
Going without underwear for several days
Getting my period
Taking baths
posted by metasarah at 9:49 AM on July 24, 2017

Have you had a recent ultrasound (transvaginal or otherwise) to rule out anything?

I would: stop wearing ANYTHING blue (like jeans) for x amount of time (and that includes avoiding all colored bedding and towels, too); stop all laundry detergent; ask for an ultrasound to rule out anything forgotten like a tampon, or any internal growth); stop not only PIV sex if that's happening, but any outside contact with your vuvla or beyond; and getting new / a different brand of TP or using wet wipes, and seeing if any one of these changes makes a difference (chart your symptoms day by day and change by change). I'd also collect any fibers you do get. But first, assume you are potentially allergic to everything that gets near your crotch and go for a "clean room" approach.
posted by Ink-stained wretch at 9:49 AM on July 24, 2017

Ask to be tested for cytolytic vaginisos, trichomoniasis, and lichen sclerosus. These are all often overlooked causes of irritation. I bet the blue fibers are a red herring.
posted by Waiting for Pierce Inverarity at 10:29 AM on July 24, 2017

I had really pervasive vaginal itching that my doctor couldn't find an underlying cause for. She sent me to a dermatologist, who put me on an SSRI for anxiety. Basically I had gotten so freaked out about the itching that I was in an itch/anxiety spiral, and needed something to short-circut that. Did the trick.
posted by radioamy at 10:55 AM on July 24, 2017 [4 favorites]

I tried using a white wash cloth in the shower, instead of the usual burgundy or brown, and when using it to clean my vulva, it came away with several tiny blue fibers on it.

The way that "Morgellon's" gets into your head is by encouraging you to be hyper-vigilant about things you've never paid attention to before, so you don't have a baseline for it. If you were someone who never wore anything but white and you'd always used white towels and white washcloths and you suddenly started seeing blue fibers, that'd be one thing, but that's basically never happened. I have had other people tell me that I probably have Morgellon's because I have a skin-picking problem--but I don't, I just have a very tedious skin-picking problem, and I know that because I know exactly what the triggers are for it and I'm able to manage it just fine 95% of the time.

Morgellon's gets described as a delusional problem, but I don't think that's totally accurate; it's obsessional thinking that drifts into delusion, but it arises in response to some real problem that is absolutely not Morgellon's but that isn't immediately and easily diagnosable and solvable. Some of which may be psychological, but the core psychological problem at that point is not that the person is delusional; it's a body-focused repetitive behavior, or health anxiety, or things in that vein.

So basically, Morgellon's isn't the thing people with Morgellon's think it is, but it is a risk with chronic problems like this, so try to avoid visiting places on the internet that encourage you towards obsessive thinking. They're basically pro-ana communities.

In more practical terms, when was the last time you got your blood sugar checked? Because diabetes and pre-diabetes can make all kinds of infections more likely.
posted by Sequence at 11:02 AM on July 24, 2017 [7 favorites]

I have had terrible yeast infections in the past (at the level of feeling/looking like my vulva had been scalded) where the gyn had a hard time finding yeast on the slide. I got better with a course of flagyl. Maybe the yeast were hiding out somewhere other than where they swabbed? The point is that sometimes tests are inconclusive or wrong, and it is normal for physicians to treat based on symptoms as long as the treatment is not likely to be damaging.

So I nth setting aside the Morgellons for now, and getting a second opinion on your original symptoms.
posted by jeoc at 11:14 AM on July 24, 2017

Interestingly I had the usual itchies, got meds for that. They cleared up, but once again got the itchies without discharge, smell, etc. The doctor mentioned during my exam that I had vulvar varicose veins. Cool compresses do the trick. However if I do have the other kinds of itchies, a cool bath with a little brown vinegar splashed in sure does help, even if I do smell like a pickle, lol.
posted by PJMoore at 11:23 AM on July 24, 2017

I occasionally have similar itching. The best treatment (in addition to the basics you listed) is sunshine and air. I am lucky that I have a deck and if I put sheets and towels over the railings for privacy, I can go out in a skirt, lie on a yoga mat and sunbathe my vagina. I also use corn starch as powder. Itching is maddening, and tests will not identify every strain of every bacteria or yeast. Good luck.
posted by theora55 at 11:31 AM on July 24, 2017

More than once I've had bv and thrush both not show up on tests, and imo what you need is a doctor who trusts you reporting symptoms and just prescribes the antibiotics. I have ongoing trouble with itches and smells, and finally found a doctor who said, 'it just sounds like bv, here's a prescription'.

The other crazy thing, is that I think some of my itching has been eczema (which I have elsewhere) and this same doctor suggested using a little of my eczema ointment on the itchy spots (externally only) and you know, it totally worked, everything seemed calmer and less revolting, instantly.
posted by glitter at 12:02 PM on July 24, 2017

If you can find one near you, go to a vaginal specialist. I had horrendous itching, and my gyn couldn't figure out what it was, so for years she randomly threw antibiotics and anti-yeast creams at me, to little effect. The vaginal specialist diagnosed me in one visit (vulvar lichen) and prescribed creams that stopped the itching in a day or two. I was so relieved I cried. (I also found a better gynecologist.)

Vaginal specialists are frustratingly (and rather disturbingly) hard to find, so I wish you luck!
posted by velvet_n_purrs at 1:35 PM on July 24, 2017 [3 favorites]

In addition to the tests suggested by Waiting for Pierce Inverarity, I would also ask about a test for ureaplasma/mycoplasma these type of bacteria are normal components of our flora but an overgrowth can cause irritation and it is often overlooked. These bacteria grow inside of cells so they may not show up on a normal BV test and require a different type of antibiotic than those usually prescribed for BV. Your partner should also be treated if you have a positive result to prevent getting it passed back to you.
posted by estronaut at 3:12 PM on July 24, 2017

I get low grade persistent yeast infections and it took seeing a young female OBGYN who suffers the same thing to get it diagnosed and prescribed an ongoing low dose of diflucan, which I can take for a few months at a time as needed.

I get cracks in the skin with this - she said to skip the antifungal creams and use a thick greasy 2% cortisone cream to heal it - works perfectly.

Itching is the worst - Godspeed...
posted by jrobin276 at 3:22 PM on July 24, 2017

Re: washing, except for heavily stained or soiled clothes, there's no real reason to use detergent. Agitation, not soap, is what cleans garments. We are just used to thinking that "linen scent" means fresh.
posted by fritillary at 5:38 PM on July 24, 2017

here is an interesting article about how Morgellon's is viewed by the medical community, which is a pretty good argument for not mentioning it to your doctor - there is a lot of baggage associated with it.
posted by 5_13_23_42_69_666 at 12:34 AM on July 25, 2017

At 40, a progesterone check could be in order. A relative had a similar issue and lecithin cleared it up. Her problem started after international travel so she had a lot of tests done.
posted by egk at 6:35 AM on July 25, 2017

Go to an STD clinic for a second opinion. Not because you have an STD necessarily (although maybe you do?), but because they are truly the "vaginal experts" you need. They diagnose lichen sclerosis, molluscum, all sorts of weird skin diseases all the time.
posted by tristeza at 9:50 PM on July 25, 2017

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