Things that make me angry – Exploiting vulvodynia patients07/14/2009 at 6:17 pm | Posted in Uncategorized | 2 Comments
Tags: books, experts, female sexual dysfunction, FSD, health, journals, marketing, medicine, pain, sexual health, vaginas, vulvodynia, yeast infection
What would you say if I told you there was a single, definite cause for vulvodynia? What would you think if I told you that, in finding the cause, there was also a prevention or another possible treatment available?
Would you say “That’s too good to be true?” Would you look through the years worth of messages posted to online support communities – the discussions of pain, possible causes, treatments and hope? Would you think about the other patients you know online (and maybe even in person) and wonder if all this could be caused by a single common factor? Would you think back to the journal articles & books you picked up along the way?
What would you do?
Because I know I would do all those things – say “It’s too good to be true,” then reflect on what other patients and doctors are saying, thinking about their experiences. I would remember the quetions as to the origins of this and related conditions, and sometimes, why there is some overlap. I would (and did) browse through the books & journal articles I’ve accumulated over the years, and I questioned whether this syndrome could have a single root cause, when so much of the literature and real life experience allows for plenty of wiggle room.
And I wondered, who could have discovered a single root cause? A researcher? One of the vulvovaginal specialists? A team of patients? Did CureTogether actually find The Cure?
Needless to say, I, for one, am skeptical.
It all begins with,
Doctors just love giving medical conditions fancy names with Latin roots to make us tremble when they give the diagnosis. Vulvodynia is one such word.
And right away things look a bit strange to me.
Yes, the doctors are trying to scare us and they take a sick delight in doing so by making up big, scary words. The doctors want to make us tremble with fear. It couldn’t possibly be the severe, debilitating pain interfering with quality of life that is so upsetting.
I must truly be the outlier, the different one, because in my experience, it was not the word itself but the meaning behind the word that scared the everliving shit out of me. A rose by any other name would have smelled just as sweet.
My regular gynecologist was reluctant to give the diagnosis of vulvodynia, because for one thing it’s not exactly easy to treat. She was visibly frustrated when she called me into her office to give the tentative diagnosis & refer me to the specialist. For another thing, she knew she was not a specialist in vulvovaginal pain. While she could provide pap smears and medication for acute infections, and could deliver babies, she knew she was unprepared to guide me along the road to treatment. For another thing, she knew that road I was about to take was going to be long & hard and fraught with “Here be dragons!”
There was no love, no delight in her eyes when she pronounced the word.
But what is vulvodynia, anyway? What was going on in my vulva? A brief description:
The condition typically presents with stinging, burning and/or itching sensations that can really zap a woman’s sense of wellbeing.
I’m not going to argue with the last statement, that vulvodynia can interfere with how patients feel about themselves, since, there’s no denying that I
certainly got knocked for a loop. However, Appleton’s description does not state that the pain takes place in the vulva; it just describes what it feels like, and the title of the page is awkward, shy.
However I’m not clear on whether Appleton is talking about true vulvodynia or vulvar vestibulitis. To be fair though, I, too, have a tendency to use the two terms interchangeably, but I at least try to use “Vulvodynia” as a broader blanket term to include pain besides vulvar vestibulitis. Perhaps that’s what’s going on here, but the difference could be important: If Appleton found treatment for vestibulitis, would it also work on general vulvodynia? Or vice versa? or
At any rate, it’s not surprising that women with sensations like Burning, stinging, and/or itching in their genitals might want to seek treatment:
Is there a cure or treatment? Mainstream medicine has been slow to come up with a definitive answer.
Indeed, although the medical community has been vaguely aware of vulvodynia since about the 1800s (and possibly even longer,) it’s really only within the last 20 or 30 years that serious research has been done. And since it is still not fully understood what causes vulvodynia & related conditions in the first place, there are various treatments in place. What works for one patient, may not work for another. Furthermore, some patients may not be comfortable with certain treatments, so it’s worthwhile to have a lot of options open.
So what treatments are patients trying? Appleton touches upon an article published by Dr. Barbara Reed in 2006. The article, Vulvodynia: Diagnosis and Management, is aptly named – it gives an overview of what vulvodynia is, how to determine if a patient may have it, and what treatment options are available.
Luckily, you and I can read the article in question too, for free.
Back to the question of whether or not there is any cure or treatment available. Researcher Reed’s outlook is generally positive:
Most women experience substantial improvement when one or more treatments are used.
And the article eventually presents a Table 3, a brief overview of what treatments patients can investigate. However, Appleton isn’t impressed with way the article “meanders through discussions of nerve sensitivity, cognitive behavior therapy and pelvic floor muscles.” Instead, she seizes upon this opportunity to point out what “tidbits” her research in nutrition has in common with Reed and other researchers’ findings in vulvodynia:
inflammation, immune system, allergies and diet.
If you will look closer at Reed’s article though, it states,
There is controversy about whether changes exist in the inflammatory infiltrate in vulvar tissue of women with vulvodynia. Some studies29-31 found an increase in inflammatory cells or mast cells, whereas others32,33 found that inflammatory cell infiltrates were similar in patients with vulvodynia and control patients… The cause of this increased neuronal density and its role in vulvodynia remain unclear.
So even the medical doctors don’t know why some patients experience inflammation in their vulvar tissues and others don’t, and even the medical doctors don’t know why that inflammation, when present, occurs.
As to the immune system response, it may be worth noting here that some patients with vulvodynia deal with overlapping chronic conditions, which may be related to the immune system functioning – enough patients deal with possibly related chronic conditions that the NVA participates in the Overlapping Conditions Alliance. Reed’s article states that some research found “minor immunologic changes” in vulvodynia patients, which “could result in a decreased ability to downregulate the inflammatory response, which in turn may be associated with neuropathic changes.”
The only place in Reed’s article where allergies is mentioned at all is in a diagnostic table as a differential diagnosis. The possibility of allergens as a cause for vulvodynia is not explored in detail in this article.
Still, there are three key words mentioned in Reed’s work that fit in comfortably with Appleton’s own research in diet & nutrition. Appleton notes that a diagnosis of vulvodynia requires there be no active yeast infection found in vaginal cultures (No word on the fact that the diagnosis also requires that there be no active bacterial infections.) So she asks (as I’m sure many patients themselves ask, hoping against hope for an easier answer,) whether it’s possible that doctors miss yeast infections during their cultures:
Can the yeast infection change form and continue to cause pain in women after the topical ointment has killed off the infection, which typically is found on the surface?
The answer is yes, according to Majorie Crandall. This actually looks like a pretty interesting piece of research. Crandall’s work suggests that “Any red, burning, irritated tissue for which there is no identifiable cause should be considered a candidate for the diagnosis of the red form of candidiasis,” including the redness that is sometimes found with vulvar vestibulitis. For vulvodynia patients, that means it might be worth looking into treating a yeast infection that’s hiding deeper in the skin.
There’s a couple of issues I have with Crandall’s article though. For one thing, not all patients with vulvodynia experience redness in their vulvas. I did, and the “-itis” suffix on “Vestibulitis” is there to indicate “inflammation.” But the medical community is moving towards a more inclusive term, “Vestibulodynia,” because redness is not always found in vulvodynia & vestibulitis patients. Crandall’s seriousness table says “Vulvodynia = vulvar vestibulitis,” whatever that means since although they’re related, they’re not technically the same thing… and she has vulvodynia & vestibulitis classified under the “Annoying = Benign = Superficial candidiasis” category. Well maybe this is just me speaking out of anger, but I for one don’t consider vulvodynia & vestibulitis to be “Annoying” or “benign.” Maybe she just means it’s not serious in the sense that, it’s not a terminal illness.
Crandall doesn’t cite her own research on this page, which annoys me to no end for a couple of reasons. One, because I’m genuinely interested in knowing which “controlled clinical studies have provided evidence for the candidiasis hypersensitivity syndrome,” and which ones show that SSRIs & cough syrup may have antifungal properties. Two, Crandall dismisses vulvodynia treatments including surgery, biofeedback, the low oxlate diet, and estrogen gel, as being “Barbaric,” “Unproven,” “Invalid,” or as causing more yeast infections. The thing is, while I’ve heard of some doctors who will aggressively treat yeast long-term just in case it IS a problem for vulvodynia patients, I’ve not seen many controlled studies on that myself – if I have run across such studies, they’re few & far enough between so that I can’t remember how they turned out.
Back to Appleton’s article. She talks about what it means to the vulvodynia patient if a hard-to-reach yeast infection is causing vulvodynia. How did the yeast get there in the first place?
The answer to that question, according to Appleton, is Sugar.
And indeed, sugar is a possible cause for yeast infections – along with injury, hormones, antibiotics, condoms, clothing, a compromised immune system, etc. etc. etc… it goes on.
Appleton goes on to cite some research about yeast infections dating from the 1970s through the early 1990s. I guess the medical research community is done studying yeast since there’s no recent work included. According to her, ultimately, sugar is the root cause for yeast infections and by extension, vulvodynia. Her article concludes, “Sugar causes everything and vulvodynia is but one more example.” (emphasis mine.) Appleton doesn’t state something like, “Sugar is a possible contributor to vulvodynia,” she puts it forth as a direct cause-effect relationship.
If that’s the real reason for vulvodynia, then the way to prevent or stop vulvodynia in its tracks is clear – eliminate sugar from your diet, thus starving the yeast out. And, maybe try the low-oxlate diet (even though one of Crandall’s articles linked to above says it may not work anyway.) It is not clear to me whether a sugar-elimination diet will eliminate the rare but still infectious strains of yeast besides Candida albicans, as that is the only species Appleton explicitly mentions in her article.
Of course, eliminating sugar isn’t an easy or comfortable thing for most people to do. Luckily, Dr. Nancy Appleton is here to help you by providing sugar elimination diet-related materials, for a nominal price.
…Does this look just a a conflict of interest to anybody else? Am I the only person here who finds it just a bit suspicious that Appleton, the author of not one but two books about sugar elimination diets and a seller of various other goodies, puts forth sugar as THE cause for vulvodynia?
Is anybody else just a little bit disturbed that someone who is not a medical doctor (M.D,) a gynecologist, a vulvovaginal specialist, or a vulvodynia patient advocate, claims to have found THE cause, and, coincidentally, a way to stop it from happening?
Maybe it’s just me, but when I see things like “Sweet suicide,” and “Sugar kills,” I can’t help but think that maybe there’s a little bit of fear mongering going on. Appleton’s article states, “An allergy is merely a precursor response that can later develop into whatever disease comes next,” meaning, that if you keep eating that sugar, you will eventually develop a debilitating disease. You may not have vulvodynia yet, but you will. Keep on eating all that junk food and you’ll be digging yourself an early grave.
What do you think? Is it just me? Am I being paranoid? I don’t know, I’ve been wrong before. But dietary changes didn’t seem to do much for me when I was dealing with the worst of the vestitibulitis, and it doesn’t seem to have an influence on the vaginismus. I mean, I cut caffeine out, sure, and I maintain a little bit of a high-fiber diet post-vestibulectomy. I added probiotics to my diet as well, something that appears nowhere in Appleton’s article.
But even I was inclined to drastically change my diet,
I think I should probably talk to my doctors first. Doctors who are more familiar with vulvodynia and my own physiology. And then, even if they say, “Oh yes you should definitely cut all sugar & seek help doing so since it’s so hard,” I think I would avoid Appleton’s plans.
Becasue I’m not fond of being marketed to in this way.
It’s a bad way of furthering research on vulvodynia, because any valid point Appleton may have about diet, allergies, and yeast, is overshadowed by the fact that she positions herself to earn money off of vulnerable patients desperate for a cure. I suppose that’s true of almost any medical research, and it’s actually a giant bone of contention for some doctors researching female sexual dysfunction in general. That’s one of Dr. Leonore Teifer’s concerns – that pharmecutical companies sponsoring research into sexual dysfunction stand to earn big money if a treatment or cure is found. The thing is so much treatments available for vulvodynia now, use what is already available – there is no magic pill for vulvodynia. There is no single cure. I want there to be one. I want there to be a prevention.
But not like this! Not if it means using scare tactics and telling patients that they are literally killing themselves a little bit every day, and the only way out is your way, which by the way you can participate in if you just pay a small fee…
On the flip side, Appleton’s marketing also targets women who don’t have vulvodynia, by holding it over their heads as a threat if they keep eating the way they do.
Another problem I have with Appleton’s page is that, nowhere on it does she mention the existence of the NVA & its efforts to further controlled research studies on vulvodynia. If you want to explore sugar as a possible causative element in the development of vulvodynia, why not approach the NVA about it? Why not see if there’s interest in starting a study? Why not make a donation? As it is, spending money on Appleton’s diet program diverts needed funds away from bona fide research efforts.
The thing is, I know this is just but one example of websites and blogs targeting and schilling questionable goods & services to vulvodynia patients,and certainly it is just one of many ways in which chronic conditions in general are subject exploitation. Appleton doesn’t outright claim she has found the cure for vulvodynia, but this program implies that her research has found a direct cause-effect link, and that has been kept hidden from patients by the medical community. I’ve seen other websites hawking goods and treatments of dubious validity for various chronic ailments. I absolutely love a post up at ChronicHealing in which the blog writer, Jeanne, picks apart suspicious claims made by the Endometrosis Foundation of America.
I don’t have a problem with investigating hidden yeast infections as a cause for vulvodynia, I don’t have a problem with investigating a low-sugar or candida elimination diet. But if those are going to be listed as possibilities, the research needs to be done in repeatable & verifable conditions. It needs to be published in a peer-reviewed journal, and subject to scrutiny & improvements. And at the same time, we need to let patients make their own informed choices about treatment, and not scare them into going down one route, wallets open.