What I know about interstitial cystitis

04/11/2011 at 7:27 pm | Posted in Uncategorized | 12 Comments
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Disclaimer: This post should not be taken as a comprehensive overview of interstitial cystitis, and it isn’t medical advice & isn’t meant to diagnose or treat any disease. There are a lot better resources for IC than this blog, if more information is what you’re looking for.

What I know about interstitial cystitis –

From the National Institues of Health / National Medical Library:

Interstitial cystitis (IC) is a condition that causes discomfort or pain in the bladder and abdomen. It is far more common in women than in men. The symptoms vary from case to case. Some people have an urgent or frequent need to urinate. Women’s symptoms often get worse during their periods. They may also have pain with sexual intercourse. [More @ the link.]

From the Interstitial Cystitis Association:

Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a bladder condition that usually consists of multiple symptoms. Most IC patients have recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, and urinary frequency (needing to go often) and urgency (feeling a strong need to go). [Click link for more.]

From the Interstitial Cystitis Network:

Interstitial cystitis (IC), also known as bladder pain syndrome (BPS), painful bladder syndrome (PBS) or hypersensitive bladder syndrome (HBS), is a condition that results in “an unpleasant sensation (pain, pressure, discomfort) perceived to be related to the urinary bladder, associated with lower urinary tract symptoms of more than 6 weeks duration, in the absence of infection or other identifiable causes.” (2009 New American IC/BPS Guidelines).The symptoms can vary greatly between individuals and even for the same person throughout the month, including an urgent need to urinate (urgency), a frequent need to urinate (frequency) and, for some, pressure and/or pelvic pain. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination (nocturia). [Go to main site for more.]

So why am I bringing this up now?

I recently went through a life change which I remain evasive about describing. What you need to know is that this change has put me in a position where I have to face the fact that my own urinary habits are causing significant problems for me and my loved ones.
My urinary frequency and urgency is not normal. We’re talking, using the bathroom upwards of 10, 20, 30 times per day, and anywhere from 2-10 times per night. On bad days I may have to use the restroom multiple times per hour.
I do not have urinary incontinence – I just have to go, now. In fact, excuse me —
— *ah* much better… For awhile…

Now seeing as this is a health problem connected in some way with my urogenital tract, unfortunately I suppose I need to pre-empt the ubiquitous question, “Have you considered the possibility that it’s normal for you??? How would you know???” with a response of, “Yes I suppose peeing excessively is normal for me, but it’s certainly unusual enough so that I’ll clearly stand out in comparison to the majority of people. Furthermore based on what I’ve gone through already, you don’t want to be out on the town with me and I don’t want to be with you because you will lose your patience after a few rest stops.”

I don’t know anyone else in meatspace who experiences urinary urgency and frequency to the degree that I do. I think it’s time to investigate the possibility of interstitial cystitis and similar conditions on top of my other pelvic problems.

For me urinary frequency and urgency is a long-term problem. Growing up, my parents and teachers disciplined me for using the bathroom so frequently, which just made things worse and pushed me further into denial. As I grew up, it just never got any better. When I was getting physical therapy for the pelvic floor dysfunction though, the urinary symptoms improved a little.

When you have urinary frequency and urgency, it can be a red flag a couple of other chronic conditions, like diabetes. Diabetes hasn’t been ruled out or looked into. But I’m not sure it’s even worth looking into, since I don’t have most of the risk factors and symptoms of diabetes. Another possibility I should rule out is thyroid problems, which are also associated with frequent urination – though again, I don’t meet most of the risk factors or symptoms for hypo- or hyperthyroidism. (At least, I don’t meet the criteria yet – I do have a family history of thyroid disease so I need to be alert for that down the line.)

But I do have co-existing pelvic floor problems… it just seems like too much to be a coincidence. Maybe I should look at related pelvic problems instead.

According to popular IC resources, I have more of the symptoms for IC than I do symptoms for diabetes or thyroid conditions. Other chronic condition (vulvodynia (and vaginismus/PFD)) – check. Chronic urinary frequency & urgency – check. Symptoms worse before period – check. Sexual pain – check.

A complication folks with IC may face – Disruption of social life – check. When I know I’m going to be in transit for a prolonged period of time, I have to consider the availability of a rest stop. If I don’t expect to find one, I have to strictly limit my fluid intake – or else not go out. I have missed out on some social interactions because I knew that I wasn’t going to be able to control my urinary urgency – and I was afraid of the physical discomfort or being made fun of for it.

I’m at the point now where I can’t eat or drink anything for breakfast at home if I know I’m going to be out and about a little later. Because the food & drink I like will make me pee. Repeatedly. The morning commute isn’t long; however, there aren’t many rest stops along the way. Stopping to use one of the few facilities will disrupt the commute to the point where stopping isn’t worth it. The city where I live is relatively accessible for people with mobility disabilities – but significantly less accessible for people with bladder problems. (I can’t help but notice that the nearest IC support group is located in a smaller town outside the main city.) Everywhere I go there are signs posted in windows that say “No public restrooms” “No restrooms” etc. And the publicly available restrooms are spaced far apart, often with limited hours. Most shop keepers let you use the rest room if you are a customer – but even then the facilities are often kept under lock & key. And so far since the life change kicked in, I have been to one business that flat-out refused to let me use the restroom during an emergency – even though I was a customer. Since that event, I reviewed restroom tips on the IC help site, downloaded some recommended bathroom finder apps to my mobile device and watched a helpful YouTube video about travel tips for folks with IC, (no transcript) hoping to get advice on how to deal with too much pee.

The challenge is that I don’t have one of the most commonly reported symptoms of IC – pain.

The only times I’ve had pain with urination have been when I had an actual urinary tract infection. There have been only a handful of times when I’ve had bladder pain – all of these times happened when I was in transit somewhere and whoever was doing the driving could not or (or in some genuinely malicious cases, would not,) find a place to stop and go. I know what bladder spasms feel like.

I feel pressure when I have to urinate… discomfort… but it’s only crossed the line into pain a few times, usually for reasons I could pin down.

So without this important symptom, pain, I don’t have as much of a motivation to go to the doctor to seek a diagnosis in the first place. Even though I know there is not one way that all people with IC act, even though I know that symptoms vary from person to person, I still have this uneasiness about even entertaining the possibility of IC. It’s denial – how dare I consider possibility that I have a chronic health condition; it’s not really that bad, right? Then comes the internalized messages from my teachers and family, that it’s all in my head; I just think I have to pee.

Still, without the pain symptom, I don’t know if I would meet the criteria for IC. I might have something else like overactive bladder. Or I could just chalk the urinary problems up to my piece of shit pelvic floor. (Or maybe my teachers were right and it really is all in my head and I just think I have to pee and all I really need is discipline. At age almost 30 *rolls eyes* Or maybe I’m just one of those people with a “Small bladder.” You know, just like how lots of folks with vaginismus have a “Small vagina.” Not really, most of the time. It can happen, but it’s fairly rare.)

The other problem is I am absolutely terrified of some of the tests usually used to diagnose IC. The cystoscope, in particular, makes me want to crawl into a hole and never come out until the doctor goes away. (Except that I’ll eventually have to come out, because I will have to pee.) There are other, less invasive tests and procedures that can be used to diagnose or rule out IC, so I may be able to find something I’m comfortable with, eventually.

But even if I do investigate IC and get some kind of diagnosis, whether with IC or another health problem, there may not be much I can do about it. As with vulvodynia, there are treatments but no real cure for IC. It’s another long-term, chronic condition, so if I have it, realistically I’ll just manage it on my own with some non-invasive lifestyle & diet changes or with some medical tools. Likewise with diabetes, thyroid disease or overactive bladder. After almost 30 years like this, I it’s hard to imagine ever not having to pee at any given moment.

So I am not saying that I have IC. I don’t know. I have something I need help with and need to investigate further. And providing some links for reference – yours & mine. It has been going on for awhile, but I was able to ignore it until now. I can do so no longer.

Notes on MTV’s True Life: I Can’t Have Sex

12/07/2010 at 9:42 pm | Posted in Uncategorized | 3 Comments
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Last night, December 6, 2010, at 10pm EST, MTV aired the season premiere of the television show, True Life. The episode was titled, “I Can’t Have Sex.” To produce this program, the show crew followed three women around over the course of several months and presented the impact of chronic pelvic pain conditions on their sex lives.

I watched the episode on television and I took notes. There’s a lot of things going on with and around this episode!

First, in case you missed it, MTV.com has the full episode available for viewing, now! This is what you’re looking for! I do not know if it will remain online indefinitely or if it will be removed in the future, but if you missed the episode here is a chance to catch up to it. It’s 42 minutes long. No subtitles available on the online version. Here is a brief summary with a link to the video. MTV has posted this follow up feature: True Life Check-ins. The follow-up article contains links to helpful resources.

Full disclosure: I sort of “Know” two of the women who were featured in this episode, because Tamra and Tali both maintain blogs. I do not know if Tess maintains a blog. Tamra’s blog is Living with Vulvar Vestibulitis. Tali’s blog is The Rambling’s of an IC Patient. I have not met anyone in person (that I know of) who was involved in filming this episode. But still, I feel a little weird posting about the episode at all, since I can apply a name, a face and a blog archive to two of the women who were on TV. It’s also weird because I have some of the conditions which were examined on the show.

Here is some of my notes taken during this episode, fleshed out a bit:

This is the first episode of MTV True Life that I have ever seen, so I went in not knowing what to expect. I rarely watch MTV and I tried to ignore the commercials that aired between segments. I was anxious about how the show would be edited and whether there would be any commentary provided by a third party. I’m still anxious about how the episode was received by a general audience. The sound to my TV was cutting out for a second at a time here & there so I was having a hard time hearing at some points.

The episode features three 20-something year old white women over the course of several months – Tess (self-diagnosed with vaginismus,) Tali (the episode focused on pelvic floor dysfunction but she has overlapping conditions which were not all given screen time,) and Tamra (diagnosed with vulvar vestibulitis and, later, orthopedic issues.) Chronic pelvic pain is an invisible condition. You would probably never guess from a first impression that these three women were dealing with chronic health problems unless they chose to disclose such information to you. Tamra, Tess and Tali are currently in, have previously been involved in, or are interested in heterosexual relationships. They are all unmarried and do not have children. We saw Tess and Tali’s boyfriends (at the time of filming) on this episode and MTV followed Tamra around on a date and to a social event. All three live in the USA. Except for the introduction to the episode, there was no narrator. That means that everything you heard, was spoken by the women or those close to them. Of course I’m sure MTV did some creative cutting and editing of the material collected. Filming wrapped up awhile ago, so there have been updates and changes in the womens’s lives in the interim between filming and the airdate.

Actual, proper terminology was used throughout the show. Chronic pelvic pain conditions were named, but some conditions that overlap were not mentioned at all (interstitial cystitis, for example, was not explored in this episode. This is a shame – interstitial cystitis is another misunderstood condition which would benefit from careful media coverage.) This episode focused on the impact of chronic pelvic pain on the women’s sex lives. And that means that while you could learn a little about life with chronic pelvic pain from this episode, for a clinical discussion and details on specific conditions and available treatments, you’ll need to look elsewhere.

We see some of the treatments that Tess, Tali and Tamra tried. A dilator kit on television, a TENS unit, a visit to a sex toy shop (Babeland) to pick out a comfortable lubricant. Psychological therapy, and pelvic floor and intra-vaginal physical therapy. (Several scenes where Tali received physical therapy with Isa Herrera looked familiar to me and Herrera talked about muscle tightness which was and remains a problem for me. It was just weird seeing someone else in the same position I had to spend so much time in.) Injections of anesthetic to the pelvic area and oral painkillers. Ice packs as needed. But I didn’t see anything about diet modification or alternative therapies like acupuncture.

Although sex and sexuality were the focus of this episode, MTV did show how chronic pain and anxiety can bleed out into other, non-sexual areas of life. Sometimes, like in Tamra’s case, pelvic and vulvovaginal pain is not limited to sexual activity. This was downplayed compared to the sexual aspects of pelvic pain, however. Because this is a blog about sexual dysfunction, I was okay with the sexual aspects of life with chronic pain for the episode – especially since I’ve been on this kick lately where I want to hear women talk about their own experiences with sexual problems. But keep in mind that if you do have chronic pelvic pain, there may be a lot of issues going on at the same time besides sexual problems. Or it may all be connected.

For example, there was one point in the episode where Tamra was speaking with a therapist. It was an emotional scene. But I thought that the therapist was misinterpreting Tamra’s concerns. Maybe it was just the way the editing was put together but during this scene, I thought that Tamra’s concerns included sex, yes… but they also went beyond relationships and sexual pleasure. However that that is what the therapist seemed more interested in. In this scene, I thought the therapist’s priorities did not match Tamra’s.

Tess was in a 5-month relationship with her boyfriend at the time filming began. She had not been able to have intercourse with him and was upfront with him. She picked out a dilator kit that came with an educational booklet and talked to a therapist to help address her anxiety.

Tali experienced the onset of her symptoms at age 17 and has seen 24 doctors. She was in a relationship with a young black man, Boom, at the time of filming (they have since broken up.) Remember, Tali’s blog is titled, “The Rambling’s of an IC patient” – yet this episode did not talk about IC at all.

Tamra was a student and the episode featured her giving a speech about vulvar vestibulitis in front of a whole bunch of people, as part of a women’s & gender studies class. Hmmm. Tamra had been in a sexually active relationship before developing what would be diagnosed as vulvar vestibulitis (her condition has since been re-examined.) She talked openly about how pain was making it hard for her to date and enter relationships – and pain made hard to enjoy other activities, like dance.

Viewers saw some of the relationship tension that Tali and Tess had, at least as far as their sexual problems went. If there were other problems in their relationships beyond sexual problems and anxiety, that was downplayed for this episode. Tess mentioned to her therapist though, that a previous boyfriend had said abusive comments to her. I thought it was interesting how Tess and her therapist involved Tess’s partner, Antonio, in her treatment for anxiety. Tali’s physical therapist also demonstrated some therapeutic techniques to Boom. (I wish I had had this opportunity to do the same with my partner; however we were in a LDR at the time of my physical therapy.)

Tess and Tali showe improvement with their favored treatments. For Tess and Tali the episode ended on an optimistic note. By the end of the episode, the two couples, Tess and her boyfriend, and Tali and Boom, were having sexual intercourse following the therapies they chose. But for Tamra, she was still dealing with a lot of pain in the end, and with a new diagnosis and the possibility of surgery. She had a labral hip tear and this may account for a lot of her pain. (She has been writing about this on her blog for some time now.)

Overall, I liked the episode. I thought it was good and I am shocked with the amount of time that these topics received. A whole hour-long television show, which works out to over 40 minutes?! Here I was scrabbling around for 2 to 7 minute clips! But there’s always room for improvement. This episode could have given much more airtime to Tali’s related conditions. Any airtime, really, for IC and lichens sclerosus. Just name them, even. In the future, a television program or other media outlet could do a whole episode or article about life with chronic pelvic pain and focus on areas besides sexual activity, because there is so much to life with pelvic pain. But there is that sexual aspect too… Was sexual pain sensationalized in this episode? Hmm… No, I don’t think so, I thought it was pretty frank. It was focused on sex, yes, but realistic to me. The editors certainly took the show in a certain direction. But it definitely wasn’t sensationalized like a recent segment on vulvodynia that aired on a local news channel. And pelvic and vulvovaginal pain was not treated like a huge joke (although Tess and her friends did laugh nervously when discussing vaginsimus.) There was no narrator for this episode and it did not feature an interview with say, a gynecologist, so no one was able to go into great detail about what causes pelvic pain and what treatments there are.
Future programs like this could also take steps to be less hetero-centric, and could actively reach out to more nonwhite women. (For example, years ago producers of the television show Oprah reached out to women of color for an episode about pelvic pain – an episode which has never aired.) And I’m surprised that the episode didn’t list some resources or URLs to information about chronic pelvic pain during the follow up with each of the interviewees. Resources such as the National Vulvodynia Association, The Interstitial Cystitis Association, and The Interstitial Cystitis Network.

So so far, in 2010, there have been a few depictions of vulvovaginal, sexual and pelvic pain, and each of these depictions have been different. There have been strengths and weaknesses with almost all of them. And I’d like to see more topics like this covered going into 2011 and beyond.

Reminder: MTV’s True Life: I Can’t Have Sex airs tonight

12/06/2010 at 7:23 pm | Posted in Uncategorized | Leave a comment
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Reminder: Tonight, December 6, 2010, MTV’s True Life series will air the episode titled, I Can’t Have Sex. This episode is meant to address chronic pelvic pain conditions, such as vulvodynia and interstitial cystitis. This will also mark the season premiere of the show. As you can see from the title, it’s expected that the episode will look at how these painful conditions impact patients’ sexuality.

Check your local listings for exact details. I expect it to air at 10pm EST.

TV listings to check for what time it airs: MTV’s schedule
(TV listing website) (type in your zip code to select the service you’re using)

Don’t know yet if MTV.com or Hulu will be simultaneously streaming the episode online. I’m hoping it’s available online in full after the television premiere because I don’t have my VCR here to record & rewind the episode when I take notes tonight.

If you will be in the Manhattan area, consider stopping by The Back Fence for a premiere party and fundraiser. Funds raised at the party will benefit pelvic pain organizations including The National Vulvodynia Association, The Interstitial Cystitis Association, and The Interstitial Cystitis Network.

We don’t know what it’s going to look like in the final product. Not even Tali Keteri herself knows what the full episode will look like in the end. A video word of caution from Tali Keteri.

MTV, we’re counting on you to do this right. Crossing my fingers…

Guest post – Heteronormativity and FSD

04/05/2010 at 7:04 am | Posted in Uncategorized | 6 Comments
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[Dear internet, we have a guest poster today! The following was written by Flora, who provides her own introduction:]

Hi, I’m Flora. I am honored to be a guest blogger here, coming at the issue from a background of having multiple disabilities, which has ultimately resulted in my viewing my FSD as being like any other disability. My views are strongly informed by the social model of disability, rather than by a medical-model approach. (Please remember that the social model of disability doesn’t mean that no one needs medical help, or that many disabilities don’t cause genuine impairment– it’s just that society regards some problems as “normal” and makes allowances for them, prioritizes medical treatment for them, and those problems are therefore less disabling. In any case, what the medical model of disability means, in the language of the disability rights movement, is viewing a disabled patient as a collection of defects and malfunctioning body parts, not as a whole person. Being in contact with this attitude was not good at all for my mental state. I avoided seeking treatment for a long time because the medical tendency to reduce full human lives to collections of symptoms and dysfunctions was so terrifying and dehumanizing.)

I should also mention that an effect of another one of my disabilities is hypergraphia, so fair warning: expect long posts from me. I’ll try my best to not throw in too many extraneous words just for the sake of writing, though.

And, oh yeah… sometimes, I’m angry. Hopefully, everyone reading this should be familiar with the “argument from tone” fallacy. I have a big block of PTSD-related issues to plow through in trying to empower myself and get effective treatment, and I’ve been frustrated by the medical profession and the mental health profession, especially the latter, when trying to talk about this stuff. I’m chipping away at it, very slowly, but long story short, I have a right to be angry about social and medical attitudes towards FSD, female sexuality, disability, and emotional distress, and I can’t always turn my frustration into something you could say at a tea party. It’s not about you, unless you’re a person who actively uses your privilege to perpetuate those attitudes.

I’m not going to go into a lot of detail about when and how I first discovered I had FSD, for now. (I have vulvar vestibulitis and interstitial cystitis, which  developed at the same time and which I thought were one condition for years; they seem to tie in with a few other things I experience, which seem to all relate in one way or another to oversensitized nerves sending pain and injury signals when there is no injury. I probably have vaginismus too, although I think that’s inevitable when nearly every single experience of any type of penetration has been painful.) I was 17 and it was a traumatic time in my life for other reasons, and the bare facts of what happened symptom-wise, stripped away from everything else that was going on emotionally at the time, probably sound a lot like many other women’s.

Basically, things that were “supposed” to feel good or at least neutral were painful, and I was feeling every time I urinated like I had a low-grade UTI that never fully went away. My gynecologist couldn’t find any infection, and my family wouldn’t talk about it with me. I found a description in a book (this was over ten years ago) of vestibulitis, and thought “hey, that sounds like what I’m experiencing,” but I couldn’t find any resources specifically about it. I was afraid to look for them out of fear that I’d end up being told it was all my fault and that there was no hope for me. So I spent years avoiding any kind of relationships, and pretending, whenever I could, that it didn’t exist, although, of course, that didn’t make it go away.

But that’s as much of my personal history as I’m willing to talk about for now, other than to say that pain should always be taken seriously and not blown off. What I wanted to talk about was the role of heteronormativity in the diagnosis and treatment of FSD– whose pain is considered valid and why. Like a lot of people in the world, I’m not heterosexual. I guess the best label to describe my attractions would be “pansexual,” but all of my most emotionally intense relationships have been with women. This apparently changes some people’s attitudes towards whether I need or deserve treatment for my pain. It shouldn’t, but it does. So my first post here is about heteronormativity in FSD treatment.

So… heteronormativity is hard to define, but it encompasses a lot of things. Some of the things I can think of that it includes are: assuming that everyone is heterosexual by default until proven otherwise, that heterosexuality is the most normal and natural means of human sexual and relational expression and superior to non-heterosexual expressions, that sex means heterosexual sex and specifically intercourse, and that heterosexual relationships and sex are more loving, meaningful, purposeful, fulfilling, and gratifying than non-heterosexual relationships and sex. And structuring all sexual and relationship advice around this assumption, all medical guidelines, all erotic material, all sexual toys and devices, all views of the path your relationships, sexuality, and life should take.

It also, in my opinion, includes some other assumptions that leave even certain types of heterosexual relationships out in the cold: the assumption, for instance, that everyone is monogamous and that monogamy is natural/superior for everyone, and that all couples are cisgendered and that being cisgendered is superior and the only natural means of expression.

Anyway, that definition out of the way…

The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.

As an example, here’s a questionnaire. There’s a large section on sexual pain. Great– that’s something that’s bothering most of us, right? There are a grand total of thirty questions you can only answer if you’ve had intercourse in the past six months. Very detailed questions about the onset, type, location, etc, of pain. Of the questions you get to answer if you haven’t had intercourse, a high number of them are things like “When did you last have intercourse? How often was your partner’s penis able to enter your vagina? How long have you been able to tolerate thrusting? How often did you experience pain due to intercourse? Are you now or have you ever been a member of the Communist party?” (Sorry. I… use humor to make this stuff more bearable for me, a lot.) And why all the questions about “penile penetration” and “your partner’s erection”? What if your partner doesn’t HAVE a penis to begin with? Then you don’t deserve as much help, apparently– even if you want penetration of some type.

Is anyone seeing the problem with this yet? A woman in a heterosexual relationship in which she’s at least attempted intercourse is automatically going to appear to have “more symptoms” by the test’s measure of it than a woman who has just the same number of symptoms and the same amount of pain, or more, but isn’t in a heterosexual relationship in which she’s attempted intercourse. And will therefore be regarded as more in need of treatment, as automatically deserving of a higher priority, than a woman in a same-sex or asexual relationship, or one who has never had a relationship or attempted intercourse before, regardless of  sexual orientation.

It would have been just as easy to replace many of the references to intercourse with references to vaginal penetration of any kind, not necessarily by penis– heck, the first things I experienced my symptoms with were fingers and tampons. The one time I was ever in a relationship with a man involving any kind of regular sexual activity, I knew intercourse was already out of the question, because finger penetration was already much too painful for me most of the time.There’s also a kind of covert heterosexism lurking in the idea that somehow, a woman can’t already have an awareness of her own FSD symptoms and know exactly what parts hurt the most before being “enlightened” to it by penile penetration making her go OW. It might also tie into the sexist/heteronormative idea that women are unaware of their own sexuality or lack sexuality until they’re the target of a man’s sexual attention, but in any case, it’s bogus. I did not need a man sticking his dick in me to be aware of the location and severity of my own pain, and I resent the idea that heterosexuality adds extra “credibility” to my pain that I don’t get otherwise, because I can’t check off any of the many tickyboxes about intercourse on a list of symptoms (and thus appear to be showing “more symptoms.” You want to see “more symptoms?” Do a pelvic exam and watch me yelp in pain, no penises required.)

Then again, the way symptom surveys will automatically prioritize you more if you’re heterosexual may stem directly from the unspoken assumption among many doctors and therapists that the only reasons women ever seek out treatment for vulvodynia are so they can have intercourse, or have babies. During my one semi-long-term heterosexual relationship, I tried to explain to a (male) therapist that I was experiencing pain every time my partner or I tried to put anything in my vagina, even something small. He asked me if I was having intercourse with my male partner, and I said no. His response (paraphrased) was, basically, “Well, why is it a problem, then?”

And this seems to be way too typical, from what I’ve seen and heard elsewhere. That a woman who isn’t in a heterosexual relationship, or any relationship at all, or isn’t planning on having children in the near future, somehow has “no reason” to want to not experience excruciating pain every time she puts something in her vagina, or even rubs the skin around it too much. How about, she might want to use penetrative toys in a relationship with another woman, or during masturbation? How about, she might want to be able to use tampons? How about, she might want to not have to worry, or at least worry less, about wearing certain kinds of clothing, or sitting in the wrong position, or what type of fabric her underwear is made of, or what kind of detergent it’s washed in? How about she might not want to be in pain any more?

You’d think the last one would be the most obvious of all. Would anyone’s attitude change if I flipped the question around when they asked me “why do you want treatment for this?” What would they say if I asked them, instead, “Why do you believe I want to be in pain?” Put the onus on them to answer, to account for why they believe I should be all right with pain as my default– not on me for why I should want to at least feel less of it!

Then again, for all I know, the assumption that I should be expected to put up with the pain might be an extension of sexist/heteronormative ideas, too. Naughty woman, getting into a relationship with another woman? Wanting to put things into your vagina for your own pleasure, not a man’s? Well, you deserve the pain, then! The only thing that should ever go into a vagina is a penis, attached to a man, in a committed monogamous relationship! It belongs to men, not to you! And the only time women should ever have sex with other women is where men can get off to it! It’s no wonder your vagina broke, since you weren’t using it properly, didn’t you read the instruction manual?

(Obviously, I’m being facetious, but it’s actually not too far off from what I was told by my mother– her reaction was basically “Why are you putting things in there in the first place? You put things in there, that’s why it hurts! It’ll stop hurting if you leave it alone and don’t touch it!” She had some issues, yes.)

The amount of misogyny that still runs rampant in the fields of gynecology, obstetrics, and urology, though– sometimes obvious, sometimes subtle– is very disturbing. I probably don’t need to give specific examples. If you’re reading this, chances are you probably have either personally experienced it or known someone who has.

And chronic pain problems in patients of any gender (but more often with women, generally speaking) tend to be blown off and pooh-poohed by a lot of people who will try to convince you that you are just experiencing “normal little pains” that are within the reasonable range of what most people expect to have to put up with in the course of their life, and you, you’re just being a spoiled brat with an entitlement complex, thinking you’re entitled to a pain-free life in a way other people aren’t. Except that most people with pain issues of any kind, by the time they get around to actually having the nerve to ask a doctor about it, have already experienced a lot more pain than most people ever expect to have to put up with as any kind of routine thing, and have probably already been told repeatedly (most likely by people who don’t know much of anything at all about how pain works or how it’s measured) that their pain is normal or just caused by some kind of stress or overexertion, so they should just put up and shut up and stop whining.

I was recently trying to write something about how male promiscuity is perceived, versus female promiscuity, and realizing that it was difficult for me to say anything from my own experience. It’s something I have talked with other people about, with friends, about the idea that only monogamous relationships can be healthy ones, and about slut-shaming and fear of rape making it more difficult for women to have multiple partners or open relationships. The thing is, while I can understand all of this on an abstract level, and have wondered abstractly about whether I want to be monogamous or not, it’s not something I want to experiment with now– explaining to one partner “no, you really can’t touch me here, no matter how much you or your other partners liked it, it really hurts” is hard enough, let alone several partners. I’ve had a few opportunities to experiment with responsible casual sex, but I’ve never acted on them, because I didn’t want to negotiate the explanations, because I was ashamed, because I felt (at the time) that my body was inadequate, because it wouldn’t stop causing me pain. Why would someone settle for me when they could find someone who didn’t have FSD?

I don’t have the sex life I want. I haven’t ever been able to have anything close. And the thing is, the one I want isn’t some porn-movie ideal in which everyone always has explosive simultaneous orgasms from intercourse. It’s got a healthy acknowledgment of the fact that even between normally passionate couples, sex just doesn’t always work out. It can even deal with things like requiring lots of advance notice for penetration of any kind. And I’m afraid that the only way for me to get adequate treatment will be to lie about myself, about my relationships, about what I want, because I am afraid that doctors will not take me seriously when I say “I want treatment”– even if it’s just about wanting to experience less pain!— unless they believe that I have a relationship with a man, who has a penis (no relationships with trans men, everyone knows they’re not REAL men!), and that what I want out of the treatment is for him to be able to put his penis in my vagina so that I’ll feel like a Real Woman ™, the end. Oh, and maybe have babies someday too. That those are the only possible  “right” answers.

I’ve heard people say that if men got vulvodynia, it would be taken seriously, and this is probably true, but for both men and women, heterosexuality is still definitely privileged when it comes to who gets taken seriously about sexual dysfunction and who doesn’t, among doctors who even acknowledge it exists.

Winterizing my pelvic pain wardrobe

01/16/2009 at 10:03 pm | Posted in Uncategorized, vulvodynia | Leave a comment
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What do you wear when your pelvis, bladder, and/or vulva hurts?

It’s winter in the northern hemisphere, and that means it’s dark and cold. We distract ourselves from the dark with major holidays and lights, at least until the shortest day of the year. We fight the cold with heaters & warm clothes. You might ask yourself in the morning, “What am I going to wear?” Every winter, there are some women who are faced with this question, only with a painful twist.

“What am I going to wear to keep warm when I can’t wear pants?”

I’m a lucky woman. I have the option & ability to wear a lot of different kinds of clothing (at least, for now.) I appreciate this.

I can wear basic, breathable underwear.
I can wear comfortable shorts, pants & jeans.
Sometimes I can even wear thongs for a few hours.
I can wear pretty, fancy lingerie when I want to feel sexy – just for a little while.

But I’m not that lucky. There’s still some clothes I avoid.

I can’t wear tight pants. A tight pair of jeans can be a stiff, constricting sweatbox for the pelvic pain patient. The crotch of jeans can rub up against your crotch and cause irritation. Or the seam can rub against a delicate clitoris – and not in a pleasant way! This was the case for me when I was experiencing peak pelvic pain days. It was quite the opposite of pleasure. I have had to sell, donate, and throw out many pairs of jeans that were, maybe never totally comfortable, but, tolerable once in the days gone by.

I can’t wear long underwear. The last time I tried to wear long underwear underneath a pair of regular work pants, I just so happened to experience a major months-long pelvic pain flare. I can’t be certain that there was a direct cause-effect relationship there… maybe it was just bad luck & bad timing. But I’m not going to risk it. Bad luck charm, right there. Bad juju.

Stockings and tights are likewise out of the picture for me, for the reasons listed above. Indeed, avoiding tight clothes is usually one of the first & “Easiest” tips given to women with pelvic pain.

Not being able to wear long underwear or stockings means I needed to find a “Go-around” to keep my legs warm during these cold winter months. Something to go underneath my pants that will still allow me some freedom of movement – and breathability for my vulva.

So I wear thigh-high stockings and/or thigh-high socks.

In my experience, thigh high socks are harder to find than thigh-high stockings in retail stores. However, the selection of thigh-high stockings is usually pretty limited. At three of the department stores I frequent, thigh high stockings made up a relatively small percent of available hosery compared to regular tights & support hose. I’m not always able to find the color/size combination want. Sometimes the color does matter, since I usually wear stockings with skirts for work.

Thigh high stockings are also seen more than regular pantyhose in lingere catalogs & websites. There’s something sexual about them… maybe it is the way they accentuate the legs, maybe it’s culture, maybe it is a combination of the two.

But thigh high socks are harder for me to find – at least, when I search for them in person.

In my quest for thigh-high socks, I walked into a socks outlet store a few weeks ago. There were no thigh highs available. I could either go with Knee-Highs or I could buy Men’s Socks, knowing that men’s sizes are larger than women’s, and if I bought a large man-sock it probably would come up to about my thigh. I decided to hold off & see what else I could scrounge up.

So I started looking for thigh high socks online.

I never realized thigh-high socks & stockings were considered such a fetish item until I started looking for them.
As of today, the first result on Google for “Thigh high socks” takes me to American Apparel’s selection. Their description says “We’ve taken our sporty socks thigh high for a sexier look.” …So, what, are regular socks… not sexy, then?
Well, I suppose feeling sexy is a nice side effect of wearing thigh high socks, but that wasn’t my main motivation for buying them. I need something practical & warm. Something that will allow me freedom of movement without being too constricting around the vulva.

Still. It’s a bit disconcerting to me to see Disembodied legs over and over again on sock-selling sites. But I suppose by definition, “Thigh high” socks requires that an entire – and often feminine – leg be shown. Maybe the photographer just ran out of room, or showing the rest of the outfit would take away from the main product of interest. And how can you know what the thigh highs look like if they are covered by pants?
(But then if we need to know what they look like, why not just show the socks spread out but not on a model, like a t-shirt that isn’t being worn?)

And my goodness, there certainly are a lot of sites that pop up within the first page of Google’s results showing women wearing thigh highs – and just their underwear or a schoolgirl lingerie costume. I even see one website aptly named “Thighhighsocks.com” – and it’s porn. Truly rule 34 in action.

I had no idea that thigh high socks were so sexualized until I started looking for them. I was not looking for socks to make me feel sexy. No one sees my thigh high socks underneath my pants. I just need something to keep my legs warm – without smothering my vulva.

That so many of these socks look and, in fact, are flimsy, is a real problem for me. The flimsier, thinner material must stretch better, and so look more appealing sexually… but then I sometimes have to wind up layering one regular sock over the thigh-highs, to keep my feet warm. Wouldn’t it be easier to just make the sock thicker & warmer? I can find knee-high wool socks, but I’m having a harder time finding thigh-high wool ones.

But I remain grateful. I am trying to remember to not take the health I have for granted.
But sometimes, when I’m upset and tired of looking for warm winter clothes that fit, I get frustrated. Truly, the fashion industry overlooks a wide variety of body types. In its rigid refusal to better accommodate more body types, some women feel forced to modify their own bodies to fit in with what’s “Normal.” When that doesn’t work, women may feel inadequate. This can lead to pretty extreme and sometimes self-destructive behavior. But that’s a discussion for another day.

I know women with pelvic pain who can wear nothing but skirts. Or, they need to wear skirts during peak pain time. This may not be so much of a problem in the spring, summer, or fall, when the tempeartures are more reasonable. I like wearing skirts on warm days in summer too. But even on those nice weather days, having to wear or not wear one thing or another, is just another reminder of the body’s limitations.

But right now, it’s winter. It’s January. I live on the Eastern seaboard. It gets cold here. This week we have temperatures ranging from a low of zero to a high of 20 or 30 degrees (Fahrenheit.) It snows.

Wearing a skirt can’t be comfortable when it’s that cold out.
This is something I am not personally familiar with. I have not had to wear skirts in the winter. But I step outside in my thigh-high socks covered by pants covered by boots, and a heavy coat on… and I’m still freezing within moments.

I don’t know about it personally – but I recognize that having to wear skirts due to pelvic pain must be a real struggle, based on the discussion I see about it online. One such vulvodynia & interstitial cystitis patient spoke out about it here. There are many others; some of the Living with Vulvar Pain blogs I have linked to on the sidebar of this page include posts just about clothing & vulvar pain.

Seeing women wearing skirts in the winter is a rare sight for me. I don’t expect to see skirts in the winter, except perhaps at parties or for a night out on the town.
Yet I have seen it.
When I see the long denim or suede skirts on women when the temperature is below freezing, I wonder… “Does she have it? Does she know? Do I know her? Is it just coincidence? Maybe I’m just over thinking things again.”

I got to know one of these women. In college, I went to class with a woman who wore long heavy skirts to class every day. We were in a women’s health class together. She was a busy, working mother. We did a project together. As I got to know her, I learned that she had had a hysterectomy. She learned that I had vulvodynia. She never came out & said that she had pelvic pain too – but I suspect that she may have, based on her interest in my interest in pelvic pain. I once highlighted a passage discussing post-menopausal women who experienced tearing of the vulvar tissues during intercourse and she pointed it out. I said, “You don’t have to be in menopause to experience that… :(” and she agreed, “No, you certainly don’t…”

I wonder… did she know? She never said anything directly but…

One of the other women wearing a skirt in winter was about my age, maybe even younger. I saw her a few weeks ago at a doctor’s office. It was December, and late at night. I didn’t speak to this woman, as I was leaving. But I saw what she was wearing.
It may be worth noting here that this doctor’s specialty is in treating pelvic pain patients…
…which is the reason I was there – mostly to address the residual vaginismus moreso than the vestibulitis. The treatment works on both, for me.

So I wonder… I wonder if she knew, too.

I can only imagine how hard that must be.

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