Talking about FSD: Listening to Patients

12/23/2009 at 10:03 pm | Posted in Uncategorized | 4 Comments
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A few weeks ago, Alternet posted an unfortunately-titled article critical of female sexual dysfunction and of the pharmaceutical industry, “Restless Vagina Syndrome”: Big Pharma’s Newest Fake Disease, by Terry Allen. I looked at the article and presented evidence that “Restless vagina syndrome” does not mean what you or Terry Allen probably think it means. What it really refers to is Restless Genital Syndrome (RGS,) also referred to as Persistent Arousal Syndrome, Persistent Sexual Arousal Syndrome, or Persistent Genital Arousal Disorder. This causes of this poorly-understood disorder have not yet been pinned down definitively; regardless of the cause, the actual condition Allen referred to manifests as physiological genital arousal & engorgement (sometimes to the point of physical discomfort,) even in the absence of conscious sexual desire and (possibly) frequent orgasms, which may or may not be satisfactory in reliving symptoms. With RGS, these orgasms are frequent enough so that not all of those orgasms are wanted or take place in a safe, socially acceptable setting. I also talked about Allen’s claims about Big Pharma marketing sexual insecurity & questions in research on FSD.

Not too long after, I encountered an interesting post by Ily at asexy beast. Ily, an asexual herself, processed another article on FSD (specifically the controversial diagnosis of Hypoactive Sexual Desire Disorder,) the Women Who Want to Want, quite differently from me. We interacted a little in comments at her blog, and I fleshed out some more ideas here, re: FSD and asexuality.

Most of the time, FSD is an almost invisible topic, except in reference to Big Pharma and the way the pharmaceutical industry markets medications for sexual dysfunction as it relates to libido, arousal & orgasm. The pain category of FSD is frequently overlooked under this umbrella term, and certainly the idea that anyone could ever too much arousal or experience too many orgasms runs contrary to what most people think of as a problem. Restless genital syndrome is so new to research & so misunderstood that authors and so-called experts applaud labeling it “Fake.”
Asexuality is simultaneously almost invisible, and was overlooked completely in the Women Who Want to Want article. You can imagine then (but with a few exceptions, you cannot possibly empathize,) how awkward it must be to be asexual and yet have a sexual health problem that might benefit from medical intervention.

Shortly after all that, I received an e-mail from a person who prefers to remain anonymous. “Uziela” sent me a link to a boingboing.net article, writing, “This article is me.  I don’t mean metaphorically; I was interviewed for this article…”

The article in question is The woman who can’t stop orgasming.

And the topic of the article is a day in the life of a woman who has Restless Genital Syndrome.

To Terry Allen, who referred to RGS and labeled it “Fake,” and others who claim that FSD is a made-up disease, I would ask – are you really willing to invalidate the experiences of women who live with real sexual health problems?

What Uziela did not share at the time of her interview for boingboing, is that in addition to RGS, she also has vulvodynia and identifies as asexual (or demisexual/Gray-A, as she is in a long-term romantic relationship with a cis man.) She contacted me and wishes to address the intersection of these areas in the interest of raising awareness.

Asexuality in and of itself is not a problem. In anticipation of where I’m sure your next thoughts are going, no, Uziela feels that her asexuality evolved independently of the vulvodynia & RGS. She writes,  “I did not become interested in boys during elementary school, throughout middle school, or in high school. I kept assuming that I was a late bloomer, although in high school I asked myself if I was, in fact, a lesbian.” Her sexual orientation is likely not related to RGS & vulvodynia. This means a couple of things: It is possible to be asexual and still experience sexual health problems, and, conversely, if you do have sexual health problems, that in and of itself may not (likely will not) change your sexual orientation, and it may not have anything to do with orientation at all. However, Uziela has run into attitudes that say asexuality in and of itself is a bad thing. “The first therapist who I told that I was asexual told me that it was an unhealthy attitude or something to that effect. I fired her.” This is frustrating, especially in the context of a therapy relationship. Uziela has “Considered seeing a sex therapist at some point just because they might be more familiar with some of this stuff… but it’s a double-edged sword. You never know how they’ll approach my disinterest in sex… ie particular kinds of sex.”

As Uziela puts it –

I think the world can use more sex positivity, always, but there are WAY too many blind spots; I find there’s a huge focus on the belief that all women are straight, want PIV sex, can have it, should seek it, etc.
Some of us are not straight; some of us are queer: gay, or bi, or pan.  Some of us are asexual.  Some of us don’t want PIV.  Some of us are straight AND don’t want PIV and maybe that doesn’t even have to DO with a pain issue.  Some of us are poly.  Some of us don’t identify as women.
We are not all kinky sex goddesses.  Some of us don’t even want to be.
These blind spots can be incredibly frustrating for those of us who are standing in them.  I attended a women’s college, and while I was there, a huge running joke was the fact that the Health Center had this huge sexuality blind spot. In their intake, they would ask if you were sexually active.  If you said you weren’t sexually active, they generally didn’t believe you.  If you said yes, they’d ask if you were using birth control or protection.  If you said no, they’d ask why.  It never occurred to them that a large percentage of our population was lesbian, even though the college was very queer-friendly and out and positive, the Health Center was clueless a lot of the time.

Related to dealing with health service professionals, Uziela told me about her experiences looking for competent doctors. Her experience was,

Mixed.  When I first started having persistent arousal, I didn’t even know what I was experiencing.   The first few doctors I saw passed the buck: the gynecologist sent me to a psychiatrist, who passed me back to the gynecologist.  I saw other psychiatrists, who decided, using strictly checklist criteria and a hammer, that I must be a bipolar nail.  There were three years when I didn’t even know what I was experiencing had a name…

It probably didn’t help that Uziela’s sex education was sorely lacking. Over the years, she and her classmates learned about puberty and heterosexual sex. “We had birth control and condoms… and ‘some people are gay’ but not … ‘how to have safe sex.’ Not … ‘what consent is.’ They did a lot about ‘OMG STDS OMG.'” And her sex ed class did not cover female orgasm (and certainly not RGS.)

It was through the internet that Uziela was clued in to what was really going on in her body. Upon reading an article that finally described what she was going through, Uziela

“Contacted Dr. [Irwin] Goldstein’s office that same day. It took a while to find space for an appointment, but he ran a gamut of tests.  In the process, I learned some interesting things:  He confirmed the diagnosis of what was then (and still is sometimes) called PSAS, he told me I had Vulvodynia/Vulvar Vestibulitis/Vestibular Adenitis, and I found out that I’m missing a major artery in my vagina and have labial fusion, two things I never would have discovered on my own.  The latter two don’t impact my health at all, but it just goes to show how much mystery a woman can have surrounding her own parts.”

However, the doctors were invasive during the diagnostic procedures,

What I remember most was the doppler ultrasound.  Dr. G did an ultrasound of my vulva, and there were SO many people in the room.  Here I am, lying on my back, naked from the waist down, with the soles of my feet together to put my body in the most useful position for the test.  There’s the doctor, the technician, maybe a couple of nurses, a few other people, other doctors and medical students, I think.  It just made me want to laugh.  They all came to see me, because I’m a medical rarity… when I was diagnosed, there were 100 patients worldwide.  Nobody knows how prevalent persistent arousal actually is, because most people won’t TALK about it.  The more doctors know, the better.”

As it turns out, life with RGS isn’t always as pleasurable as fantasizes make it seem to be. Violet Blue may be fascinated by the idea of “the persistent fantasy of unlimited orgasms, without physical barriers,” but life with unlimited, instantaneous orgasm is harder than it sounds. From the boingboing article,

“Every time I do something, I have to evaluate my situation. Where am I? Are there other people around? How well do I know them? What is the likelihood that, if I don’t get someplace private in time, things could get complicated? Can I make noise? (Being vocal isn’t necessary, but it helps release more of the pressure.) I avoid triggers — things like music with heavy bass, vibrations from riding a train or an idle car, cold air, musky cologne, darkness, stress, scary movies, romantic movies, unexpected touch, a full bladder… If my heart rate shoots up too high for too long, I flare up. I avoided exercise and gained a lot of weight. One time, I was hugging a male relative and I felt an orgasm arise… Now, I try to avoid hugs in general unless I feel ready for them.”

It’s a lot to have to take into consideration, and it leaves Uziela with feelings of vulnerability:

“One thing I’ve noticed is being this aroused long term makes me think like a prey creature.  I note within myself a sense of paranoia — that people will discover me when I lose control, that this will incite them to the point of an angry mob and they will visit violence upon me.  I realize this is rather unlikely; people are more likely to be uncomfortable and move away, but since most humans seek privacy and safe places for sex, apparently my brain considers me to be in a chronically vulnerable state.”

Uziela is not the first person to describe having to take these outside factors into consideration before going about her day due to RGS; an earlier article from 2002 describes a case study where for one woman, “The problem [RGS] made it difficult to get through the work day, and prevented her from leaving the house otherwise.”

Interestingly, the boingboing article includes one line which says, “Because of a vulvar pain disorder I have that sometimes comes with PSAS…” [emphasis mine.] Uziela has confirmed that she has vulvodynia. This is the first time I’ve heard RGS connected to vulvodynia, or more correctly, vice versa – first time I have seen vulvodynia connected to RGS. I can definitely imagine that RGS could be connected to pudendal neuralgia, which is correlated with vulvodynia. During our conversation, Uziela described experiencing some mysterious spasm symptoms which may be related to restless leg syndrome or an overactive bladder. But that RGS and vulvodynia have a relationship, comes as something of a surprise to me.
Yet I know that vulvodynia frequently does overlap with other chronic conditions, such as IBS, IC, fibromyalgia, and more. That overlapping of chronic conditions happens often enough so that the NVA is working with a website dedicated to understanding overlapping conditions. And indeed, Uziela does have some other chronic conditions besides RGS & vulvodynia that need simultaneous management, including fibromyalgia and PCOS.

However, it is not clear what the real cause of Uziela’s RGS is. I asked if she had any clues as to what caused her RGS –

“The best guess I have is the hormone onset. I was on Provera [oral pills; not the depo provera shot] to regulate my cycles. I discontinued in … October or November.  In December, i started having symptoms… And I was 16(?) when they started giving it to me.”

There are some additional hormonal factors at work – “I get my [hormone] levels checked once or twice a year.  I know I don’t have low testosterone; although mine’s in range of what’s considered normal, since I manifest PCOS anyway, my doctor thinks my testosterone might be too high for *me* — and given that my sex drive is rather atypical, I know it’s not a hormonal deficiency.”

My own vulvodynia issues may be related to hormones as well, at least a little; I had been on oral birth control pills for about two years at the time of diagnosis. I have seen a study which suggested that hormonal birth control may sometimes be somehow related to vulvodynia later on in life, and that 20/20 television segment on vulvodynia (which was never named as such in the segment for some reason…) birth control pills were explicitly mentioned as a possible cause. I have also heard similar anecdotes from other women with vulvar pain. (Still, I don’t want to panic any readers. I know many, many women use hormonal birth control pills for years without complications. My own sister has been on birth control pills for over ten years.) How hormones could play into RGS however is not as clear to me.

What limited exposure to literature on RGS I’ve had before, suggested that it may be related to damage to the pudental nerve. And during her exam with Dr. Goldetein, the doctors did find signs of  nerve damage. But where that damage came from, is a mystery – Uzelia does not remember ever having a serious injury to that area in her lifetime.
Uziela shared with me that there are several other possible causes for RGS; some proposed areas for further research include “Neurologic – Central, [brain and spinal cord changes or injury,] Neurologic – Peripheral, [changes or injury to local nerves in the pelvis,] Pharmacologic, [SSRI withdrawal may be related,] Vascular and Other.” These areas of investigation merit some urgency, as many patients are distressed from having their lives interrupted by  recurrent, invasive sensations that are rarely fully resolved.

Despite the persistent arousal symptoms and frequent orgasms, Uziela does not have intercourse, “Partly due to the asexuality (I have no desire for it) and partly due to the vulvodynia (I see no reason to seek out pain).  My sexual female friends tell me that when a female gets sufficiently aroused, they have a nigh-irresistible drive in the direction of penetration.  I have never experienced this, which is part of what drove me to decide that even though I seek sexual stimulus as a result of PSAS/PAS/PGAD/RGD, there’s definitely an aspect of asexuality there.” She did mention to me that some asexuals can and do engage in sexual activities including intercourse, but, “It’s a spectrum… most of the more vocal asexuals I see in the community are in one of two categories:
‘ew sex no / don’t touch me…’ ‘meh sex, but I don’t mind doing it.”

That Uziela does not have sexual intercourse with her partner does not impact the quality of their relationship. Like myself, she is in a long-term, long-distance relationship, and she and her partner have occasional visits together. Her partner is aware of the asexual community, and they are both careful about respecting each others’ boundaries. “In the early stages of our relationship, we had discussions regularly on the subject of boundaries, both his and mine.  We made lists of activities: Do, Don’t Do, and Try Once.  (This description probably makes me sound significantly more sexually adventurous than I actually am.)”
Ironically, Uziela may now be more interested in sexual activity than her partner – “In the past few years, he’s hit andropause, which is a true irony, because now he’s even less interested in sexual activity than I am!  (Although I am not “driven” to sex like the average person, I, like many patients, find that the sexual attention of a partner can be more productive in at least temporarily resolving persistent arousal than anything we can do ourselves.) This is a delicate situation, as Uziela must be careful not to pressure her partner for sexual activity, and vice versa.

Note what reason was not cited as a reason for passing on intercourse: relationship or partner dissatisfaction. In fact, Uziela says, “I wish I could see him more often; sometimes I think he is the closest another person has ever come to truly understanding me, and I mean this in every sense of the word.” It may also be worth noting here that Uziela was not in a relationship at the time of the vulvodynia or RGS symptom onsets. So in this case, Uziela’s sexual health problems are not due to an inept or insensitive partner. To insist otherwise would be to place blame and create needless relationship stress.

Currently, Uziela manages RGS mostly by avoiding triggering situations, and is able to manage the vulvodynia since she only experiences pain on contact.(Unfortunately, that means pelvic exams can still be painful.) Her experience of orgasm is more or less intense depending on how long she has been in a state of physiological arousal. In the right situation, some of these orgasms can be enjoyable, but there is a caveat just to mention this: “There’s a stigma about talking about that as it causes people to dismiss our suffering and it gives the impression that it’s not a Problem when in fact, it still is.” One of the problems is that Uziela has little to no control over what situations she is in, so sometimes orgasm can be frightening or dangerous. Most of the time, orgasm returns Uziela to a “Baseline” state but does not completely resolve the RGS symptoms.

Despite the challenges she lives with, Uziela would prefer not to have a major, abrupt medical intervention for her RGS. Some treatments are more extreme than others, and all of them come with potential side effects, which can be serious. While we were talking about life with sexual health problems, we both mentioned that even when symptoms are managed, they could still exist on some level, just below the surface. It’s something we are likely to live with long-term, and a sudden disappearance of symptoms would be unnerving. Uziela also has some concerns about living with RGS long-term, as there have been other patients who find it difficult to reach orgasm over time, and thus are not able to find even temporary relief. Simultaneously, finding doctors and friends who are aware of the existence of such sexual health problems, and are willing to speak frankly about them, is in and of itself a challenge, and one that patients like she and I will continue to navigate long-term. At this point, Uziela’s RGS is less invasive and less intense than it was a few years ago and because of this, she is able to focus on other areas of her health and life.

Note: comments to this post will be under additional scrutiny & moderation. The boingboing.net article allowed some comments of a dismissive and/or presumptuous nature to go through which will not be tolerated here.

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  1. […] reminder: I am looking for Guest Posters. I hope that this week’s semi-guest post gave you some food for thought; I put the post together & guided the direction but I could not […]

  2. […] have been written with the help of others are Guest Post – My Experiences with Vulvodynia and Talking about FSD: Listening to Patients (I call this a semi-guest post because I wrote some of it, but the real content was provided by […]

  3. […] (Lots more good stuff here. See also her follow-up post, which gives voice to a woman who’s suffering from this condition.) […]

  4. […] sexual dysfunction, and especially sexual pain disorders, in our basic education and advice. There are aces with these experiences! It can be extra challenging to figure out what’s going on when ace, and/or dysphoric, and/or […]


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