Tags: depression, disability, medicine, TMI
In my last blog post, I wrote about losing about ~8 months to another bout of depression. I’ve had long episodes of depression off and on since I was a child. It’s been years since the last time I had depression. Frankly, I kind of figured this was going to happen again sooner or later, based on my own mental health history. For a long time though, the depression wasn’t an issue… or whatever depression I did have, could easily be attributed to a more pressing concern – chronic vulvar pain & painful sex! The pelvic pain problems were priority #1.
Eventually though, the depression came back, even though at this point I have most of the pelvic pain under control (most of the time, for now…) (I’ve often thought to myself, ‘If I have a lid on the painful sex and chronic pain, why am I still depressed?! I should be happy for that reason alone!’ Nope. It worked that way for awhile! But then it didn’t anymore.)
As I said in my last post, I started seeing a therapist for mental health counseling… with little to no improvement over about ~6 months. Things came to a head when I developed a new, unrelated pelvic problem – a vulvar cyst. Given my history of vulvar pain problems, the cyst was the last straw. The stress of the cyst + depression pushed me over my personal minimum thresh hold required to justify taking on the risks of sexual side effects due to antidepressants - and the risks of Stigma associated with medical treatment for mental illness. Some of you have heard the litany of Stigma before – I’m talking about having overheard and read stuff like, “Big pharma is inventing new illnesses and making big cash over it! The risks of side effects aren’t worth medication! Haven’t you tried alternative, natural medicine yet? You just need to take some extra vitamins, get some sunlight, exercise, etc. Americans are all over medicated anyway. You should be thankful for what you got! Willpower/Bootstraps!” (Obviously I’m paraphrasing; basically channeling stuff like this.)
I tried it the way proponents of more natural, less invasive, more holistic treatment options suggest.
The non-medical stuff didn’t work out for me.
I wasn’t making progress with talk therapy alone – or rather, talk therapy + the stuff that came out of talk therapy like: recommended reading + some homework exercises + goal-setting + etc. Unfortunately, additional supplemental holistic treatments in conjunction with talk therapy aren’t a practical option at this time either. I no longer have the time, transportation or cash up front to pay for acupuncture treatments. (Plus I no longer have access to my old, trusted acupuncturist.) I’m not comfortable with light therapy because there are questions about light therapy and eye problems for certain people (I’m at elevated risk of being one such person.) Vitamin D & multivitamin supplements don’t do anything on me as far as depression goes. And finally, the last time I joined a gym to work up a sweat regularly, I developed a series of months-long vaginal infections.
So the non-invasive, natural, etc. stuff maybe isn’t in my best interests after all.
Certainly the pressure to conform & minimize what I was feeling – or not feeling, more accurately, since I was shuffling around feeling completely Dead on the Inside – was making things worse. I felt so much pressure…
…Pressure to please some, vague ~idea~ of an expert.
…Pressure to behave, to “Get over it,” to continue to haul around the responsibility for other people’s actions. “Honey that was a long time ago, let it go.”
…Pressure to please all those people, journalists, and Ph.D.’s who claim to be ~just looking out for us after all,~ in steering me away from medical treatments…
…And unfortunately, that pressure to please others played right into the depression to prolong it and make it worse. When I went on the antidepressants, one of the first things I did when I got home with the medication was break down and cry about what a huge failure of a person I am, for actually needing medication. For “Giving up.” For “Taking the first easy way out.” For taking the path of least resistance, instead of confronting my fears head-on. Etc. Etc. Internalized bullshit.
And of course, I wasn’t a failure for needing medication or any other reason really – I’m coming to terms with the fact that I am in fact, not a failure at all. (We’re not quite there yet due to residual depression.) I wasn’t giving up, taking the easy way out, or running from the past.
I was just a person who needed more help.
Not that I should have felt forced to try the other holistic ways in the first place at all. It’s easier to find pressure from Big Pharma to attract customers and try new (or re-patented) old medication in the form of Big Marketing. But the pendulum can swing the other way too, and in my vulnerable state, I got pushed off of the other edge.
I asked my primary care physician to put me on Bupropion, better known as “Wellbutrin” or sometimes “Zyban.” I got a prescription generic for a half-dose (150mg) of extended release bupropion, for $10/month with insurance. I had the option to bump it up to a full (300mg) dose after 4-6 weeks of being on it, if I wasn’t satisfied with the results at half-strength.
It was not a decision I made lightly. In addition to the stigma of depression & using medical treatment for it, I had to anticipate the medication’s potential side effects. I selected bupropion because SSRI antidepressants have the potential to cause sexual dysfunction. SSRIs may cause some patients to experience things like, lower libido or difficulty orgasming, or more rarely, post-SSRI sexual dysfunction. I don’t have those problems; I have a history of pain. But I figure, I’m already stacked behind the 8-ball as far as sex problems go, so I should probably avoid medication that could throw something new into the mix.
One other factor to consider: I am aware that low-dose tricyclic antidepressants can be a treatment for vulvodynia. Part of the reason I stayed off of the tricyclics and opted for surgery all those years ago is that, at that time, I wanted to leave the option for using antidepressants for depression open in the future. I still don’t know if you can a tricyclic with another type of antidepressant, or if you can bump the tricyclic pain-treatment dose up for mental health, and still keep the pain effect in place.
After crying for awhile, I took my first pill. Then another the next day, and so on.
The antidepressant worked.
The bupropion kicked in surprisingly fast – I felt changes within like the first 2 weeks. The incessant, nagging, self-deprecating voice in my head quieted down. I was able to concentrate on my continuing education studies. The knowledge was sticking. I was doing better at work. I was starting to take interest in old activities again. I started to make more progress in therapy. I was remembering stuff I hadn’t thought about in a long time & making connections from prior events to my current beliefs & behaviors. I could actually feel feelings again, including anger! and sadness! and hope, oh god, the hope! The iceberg of depression started to melt & develop cracks… And it was still inherently me underneath the layers of Ice.
It wasn’t perfect. There were some side effects. I lost some weight. The tinnitus I’ve had since I was a kid sounded louder in my head. I had to take the medication in the evening before bed since it made me sleepy. My libido stayed at the same level, and I actually had an easier time orgasming on the medication than I did off it – Not that orgasm was ever a problem for me to begin with; I just felt more physically sensitive to touch on meds. The mental health improvement was noticeable and positive, but not complete. I felt about a 50% improvement in the depression on the 150mg dose. I was getting ready to bump up the dose to the full 300mg.
Then I started losing my hair.
Or more accurately, my hair stopped growing back in. One day I was getting ready to go out, I tied my hair up and saw a bald spot on the back of my head. That’s never been there before and it’s a problem.
It’s not like the hair fell out in big patches or clumps, or like I was shedding any more than normal. The hair was still falling out at the normal rate, there just wasn’t anything new coming in replace the old stuff. The effect was subtle, but over the next few days – and after comparing my current hair to old photos – I confirmed the hair was definitely thinning overall compared to before I went on medication. It’s subtle – probably something only I would ever notice.
Unfortunately that was the deal-breaker for me and bupropion. Please understand that me and my hair are very attached to each other. We’re planning on traveling to Paris together one day, you see. After a few days of deliberation (and feeling self-conscious,) I decided I wasn’t yet ready to change my hairstyle to something better for thinning hair. I talked to my doctor, and I went off the bupropion.
I had one withdrawal effect from going off the bupropion, a headache that varied in intensity from low to high for about a month. It responded to OTC painkillers and eventually went away. I’m still waiting for the hair to grow back though.
This is the point at which I could get angry and shake my first at Big Pharma for causing my hair loss. But actually, when I did the homework to figure out which antidepressants might work for me, I found out ahead of time that hair loss can be a very rare side effect. I was optimistic that I would be in the majority and not experience this side effect. It only happens to something like less than 1% of bupropion users, and usually kicks in after a few months. It’s weird because it kicked in fast on me – I noticed the hair loss about 6 weeks in. (Just to be on the safe side, my doctor ordered some blood screens to make sure the hair loss wasn’t related to some other medical problem. Apparently not.) It’s possible for depression to cause hair loss in and of itself, if it gets bad enough too. So although I’ll never know 100% for sure that it was the bupropion all along, it seems to be the most probable conclusion.
For me, the mental health effects of the medication were overall good enough so that I’ve decided, if I get depression again later… I’m just going to order a hairpiece, go to a nice salon and change my hairstyle… and then go back on meds. I’m annoyed about the hair loss but not angry… because the medication did something nothing else could do. It actually broke through the depression and gave me a rest from the self-loathing. It was worth it.
Unfortunately, I’m now back to relying on talk therapy for further mental health improvements. The medication did what it was supposed to do, but I couldn’t stay on it. It is a conundrum.
I’m not back to square one with the depression, but I’m not “All better” either! I switched therapists and I’m doing better with the current one than my old one. But it’s been rough. There’s a lot of bullshit in my past that I have to address now, and it still derails me.
What, exactly, in my past is so hard to recover from? What got triggered in the first place by recent events? This isn’t exactly a depression blog, and I’m still not 100% comfortable talking about the depression. It figures; I can go on for hours and hours about vaginas and feminisms and sex, but ask me to open up about what’s inside my head and I slam shut.
So let me put it to you this way:
It is simultaneously deeply liberating
and completely devastating
that all those times, when I was a little kid,
saying to myself, “No one loves me,”
Actually, I was right.
Ouch. Ow. Owwww. Oh come on, that’s the revelation?! So that’s what I have going on now. Emotional and verbal abuse?! Generation upon generation of fucked up parenting?! An actual paper trail of documented abuse and bullying?! All culminating in this one moment?! Mainfesting their legacies now?! Of all times?! And now I have to address the current thought patterns and the past stuff?!
What kind of revelation is that?! Why couldn’t have been something like a surplus of excess puppies, or something good. Brain, you’re really going to make me go through this now? Really? If I go through this now, will I feel better about it later?
I feel like Sgt. Hiller (played by Will Smith) when he’s dragging the unconscious outer space alien across the desert in Independence Day.
[Right about at this part of the movie. Remember this? Party like it's 1996. Description: Actor Will Smith in military clothes, bare arms, sunglasses, mouth agape. Leaning/walking forward. Part of a parachute is draped over his right shoulder; you cant't see it in this picture but he is dragging an unconscious space alien behind him, along the ground, wrapped inside of the parachute. Erin screengrabbed it @ Hellogiggles.]
Cuz I’m all like, “But no, now I gotta integrate this depression and family history of mental illnesses and develop into a something that I’m not, to get to where I want to be now, except you can’t do that right now, because one day at a time. Especially when you are minus the support that you’re supposed to be able to draw upon internally. Dragging your sorry ass across the desert… And what the hell is that smell!? I could have been at a barbeque!”
The antidepressants helped me crash & then punch out the alien thoughts inside of me - “Welcome to EARTH!” And the thoughts really are alien! But now that they’re quieter, I have to still have to deal with them, take them somewhere safe and figure them out.
Tags: academia, communication, disability, experts, female sexual dysfunction, FSD, health, language, medicine, pain, psychology, sex, sexual dysfunction, sexual health, vulvar vestibulitis
No one knows what to do with sexual pain.
If you have experienced long term sexual and/or genital pain, you’ve probably seen multiple doctors about it. You may have started with a general practitioner, who referred you to a gynecologist or urologist, who referred you to a sex therapist, who referred you to a pain specialist. There may have even been a dermatologist or psychatrist in there somewhere. And you may have noticed that each of these professions have their own ideas (or lack thereof) about how to best handle the situation. When getting refered to yet another doctor, you’re getting clued into who your current caregiver thinks is likely to have the most knowledge about treatments. (Of course, this assumes you have the health insurance and cash to cover medical treatments.)
But having been through the doctor shuffle already, I have come to the conclusion that no one really knows what to do with sexual pain.
Part of the reason chronic pelvic pain patients get bounced around so much is that, behind the scenes, doctors themselves are still debating how best to handle sexual and genital pain. Are we dealing with a chronic pain syndrome akin to something like back or neck pain? Or are we dealing with something purely sexual? A gynecologist may feel inadequately prepared to deal with long-term genital pain that doesn’t resolve following standard operating procedures. But when the pain takes place mostly during, or most acutely, during sexual activity, a pain specialist may think the problem is purely sexual – and some pain specialists may feel uncomfortable addressing unwanted pain during sex. Sexual dysfunction as we in the US know it is a relatively new and highly controversial area of study. And it will take time for doctors, scientists and philosophers to sort out the defining characteristics and treatments of dysfunction – if indeed such standards can ever be decided. It is the nature of science and medicine to go through revisions and changes.
I just wish these doctors and professionals would make up their minds already about which one of them I’m supposed to go to for treatment.
One such behind-the-scenes debate about the appropriate way to address sexual pain took place in early 2005, when Dr. Yitzchak M. Binik, Ph.D. wrote in to the peer-reviewed journal, Archives of Sexual Behavior. You can view an abstract of Dr. Binik’s piece, Should dyspareunia be retained as a sexual dysfunction in DSM-V? A painful classification decision here. If you want to learn more, you can view the full text on Dr. Binik’s website. (I can’t determine if what we’re going to look at today is considered an editorial piece, a study or a research review.)
So who is this guy? Dr. Binik is the director of Sex & Couple Therapy Service up at McGill University Hospital in Canada. He was one of the contributors to the textbook, Female Sexual Pain Disorders, (wrote the foreword) and he has written many articles about dyspareunia. According to his website, he’s also been involved with research on painful sex – there are three grant-funded projects listed as of 2011. But wait, there’s more – his whole resume is up for perusal.
At the time of Dr. Binik’s submission to the Archives of Sexual Behavior, dyspareunia (painful sex – usually when professionals say it, they mean “Cis-heterosexual intercourse,”) was classified as one of the four female sexual dysfunctions then-recognized by the DSM-IV. (The DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders – basically it establishes guidelines for recognizing and treating various mental illnesses and disabilities. Professionals that rely on the DSM include psychologists and medical doctors. As of today a fifth revision to the manual is pending.) The other three sexual dysfunctions recognized by the text are arousal, libido and orgasm problems. Until then, there was not much debate among professionals who deal with dyspareunia about how appropriate its classification as a sexual dysfunction is.
Dr. Binik set out to challenge the classification of dyspareunia, with the goal of shifting it out of the sexual dysfunctions and into the pain category of mental disorders in the DSM. Reclassification of dyspareunia as a pain disorder instead of a sexual dysfunction would not remove it from the DSM completely – it would just move the problem around and give it a different name, grouping dyspareunia with any other pain while recognizing non-sexual pain in the crotch – such as the pain of a gynecological exam or attempted tampon insertion.
In Binik’s discussion of the history behind the term, “Dyspareunia,” he makes it sound like sexual pain was pretty much just thrown in with the other dysfunctions for lack of any better ideas at the time. But painful sex presents some unique problems compared to the other three sexual dysfunctions – after all, sexual pain frequently bleeds out into non-sexual areas of life. He talks about the differences between pain during sex (an act) vs. arousal or desire dysfunctions (physiological reactions,) and how dyspareunia is a broad term – to Binik, its breadth is a weakness instead of a strength.
There are several sexual dysfunction issues that Binik didn’t explore, and these omissions mean something. He did not challenge or question the existence or appropriateness of the term “Dysfunction” for any other sexual problem. He excluded a discussion of vaginismus, though this may be because vaginismus isn’t technically a dyspaerunia issue in the current DSM for some reason. (I’m not yet 100% clear on what the reason is for vaginismus to sit on it’s own tier of dysfunction; I think the folks behind the DSM fixated on how it prevents vaginal insertion of objects as the main feature, instead of the pain associated with attempts at insertion. This distinction is likely to change with the DSM-V.)
As examples to bolster his reclassification argument, Binik focuses almost exclusively on vulvar vestibulitis (VVS) patients – so he’s talking about people like me. Binik did not talk about dyspaerunia and endometriosis, or dyspareunia and interstitial cystitis, or dyspareunia and cancer. For this discussion, dyspareunia and VVS are used almost interchangeably… even though VVS is not the only cause and kind of painful sex.
I summarize Binik’s main agruments to move dyspareunia out of the sexual dysfuctions and into pain as:
1. Dyspareunia is similar to any other pain in self reports. Genital pain is similar to other pain conditions when visualized using brain scans (pages 14, 16.)
2. There’s more research on pain. “By contrast, there is a relatively large literature onhow pain is represented in the brain (Casey & Bushnell,2000; Talbot et al., 1991).” (page 16.) So there’s more material to work with.
3. Treatment plans for sexual dysfunction don’t usually include pain management. If professionals take a pain perspective of dyspareunia, it opens up more complementary treatment options. That means potentially better outcomes for patients (page 18.)
(Unfortunately, Dr. Binik doesn’t address this – it also means more anxiety about seeking treatment in the first place, since pain management can include oral medications – and certain feminist anti-FSD activists in particular and bootstrapists in general dedicate extensive resources to opposing medication for sexual and health problems. Just think of all those sensationalist news stories about celebrities becoming addicted to pain pills.)
4. Socially, pain is a more dignified, less controversial subject than sex – “Finally, as a seeker of research funding, I have noted that there have been several recent new governmental funding initiatives for pain related to dyspareunia (see National Institute of ChildHealth and Development, 2000). As far as I know, this is not being matched in the sexuality area where funding is constantly under attack” (page 19.) This is an unfortunate reflection of how sexual issues are downplayed and sneered at by the public. It’s just easier to get funding, research and respect if you’re exploring pain than it is if you’re exploring sex.
Judging from the passionate responses included with the same issue of Archives of Sexual Behavior, Binik’s article was quite controversial at the time. There were at least 21 responses, plus however many other e-mails and memos were written up and sent around but didn’t get published. Eventually Binik wrote a follow-up statement in response to professional criticism, which I’d like to look at with you later.
My biggest schtick with Binik’s article and the responses is: I honestly don’t get why this has to be an either/or question.
I’m saying this as a patient: This isn’t a simple either-or issue. Dyspareunia isn’t something that fits neatly into a single box. Try to stick it in the sex box, and the pain stuff will still leak out into every day life. Try to place it exclusively in the pain box, and sexual problems will jump in. You can have pain AND another sexual dysfunction, like problems with arousal or orgasm.
If you ask me, pain in the genitals should be recognized as both a pain and sexual problem. For some patients, it may very well fit neatly into only one category. But whatever professional field is assigned as having the final say on the best way to treat dyspareunia – you need to be prepared to go outside of your own comfort zone, in order to bring me the comfort I need.
Unfortunately my perspective as a patient isn’t given much value. Just the location of publication presents a problem – the insular nature of being part of a peer-reviewed journal itself acts like a firewall to keep out non-professionals and non-academics. Which means ordinary folks probably don’t even get a chance to find out when debates like this happen, and we probably won’t be solicited for feedback. These debates excluded most women with FSD from participating.
It’s a bummer, too, since I got more to say about this article, which I’ll spell out here instead.
A major weakness of Binik’s argument and one that Binik had to address in a later, separate response, is that he did not really consider the sexual part of sexual pain.
Like it or not, pain in the genitals takes on a different meaning than pain in the arm or neck. And no it’s not fair, I think it sucks that it is socially unacceptable to say, “My vulva/penis/clitoris hurts today.” Not that its easy to talk about chronic pain to begin with though! Non-sexual, non-genital pain still gets heaps of stigma and able-bodied folks going, “Deal with it.” But right now, in the US at least, genitals are all tied up with issues of gender, identity and performance. So looking at dyspareunia exclusively as a pain problem won’t address the ways in which pain can impact sexuality. Even if the pain resolves satisfactorily, dyspareunia patients may still have to deal with long-term insecurity and body memories. If other dysfunctions like difficulty or loss of orgasm have gotten tied in with the pain, then those non-painful problems may not resolve at the same time as pain. To ignore the sexual component of genital pain, to the extent that it is present, is inadequate.
ON THE OTHER HAND, for some folks, skipping the sex part and addressing the pain is exactly what’s needed. This was actually more the case for me – what I needed the most when I went through the most intense period of genital pain and treatment wasn’t sex therapy or a better understanding of social construction. Gender roles and patriarchy, as much as they do hinder me in many other ways, did not reach inside of my body and cause my cells to rebel. What I needed most was something to address the physical pain and discomfort.
That urgent need is lessened now, but it’s not completely gone and it will probably never go away completely. So I remain open to medicine in my sex life now and in the future.
Now, of all the people who wrote in, who do you think would have been the most likely to agree that dyspareunia should not be classified as a sexual dysfunction? I’ll give you a hint: After all, sexual dysfunction is a controversial term – part of the resistance against it stems from concern that the medical industry will throw around the term to convince able-bodied women that they have physical problems, thus increasing sales of medications and devices to address it. Who’s to say whether a libido is low in the first place, and how exactly are we supposed to measure such a subjective experience?
So I was shocked, absolutely shocked, to see Dr. Leonore Tiefer, Ph.D., organizer behind The New View Campaign, sex therapist, educator, author and editor, write a negative response to Dr. Binik’s proposition. You may remember Dr. Tiefer from such posts as a 5-part series on Sex is not a Natural Act and A Review of A New View of Women’s Sexuality. You may also recognize her name from prolific writing on feminism, social construction and female sexual dysfunction. Dr. Tiefer is a critic of female sexual dysfunction, particularly the way it is handled by organizers of the DSM and its end-users (the end users being doctors and other professionals.)
So if, in other cases, Dr. Tiefer supports the view that female sexual dysfunction is a myth manufactured by medicine (even if she herself is careful to avoid using that exact phrasing,) then what’s she doing getting involved with the reality of dyspareunia?
To be continued…
Tags: accessibility, bladder, disability, health, interstitial cystitis, medicine, pain
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 -
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.
Tags: experts, female sexual dysfunction, FSD, guest post, health, medicine, pain, pelvic floor dysfunction, relationships, sex, sexual dysfunction, sexual health, vaginismus
[Dear internet, we have a guest poster today! The following was written by Elaine F. Bayless:
Elaine F. Bayless is an author and pastor who lives in Raleigh, NC. She is currently working on a memoir about her experience with pelvic floor dysfunction. After choosing to have surgery to correct her issues, she is happy to report that most of the dysfunction is resolved. She and her husband are expecting their first child in July of this year. For more information about Elaine's published work and her writing process, visit her blog http://elainefbayless.blogspot.com]
I am one of the lucky ones. I only saw three gynecologists who ignored my vaginismus. I only wasted 9 months of my marriage in therapy, convinced that my pain was psychological. My husband never forced me into sex, never punished me for my condition. It only took me six years of treatment to finally find resolution in the form of penetration concomitant with orgasm – MY orgasm.
In November 2010, Discover magazine’s column, Vital Signs, discussed an intern who missed the symptom of painful intercourse. When the doctor asked him about this symptom, he admitted that he thought all women found sex painful. This doctor was shocked to discover this attitude in an “educated” person. I’m not shocked.
Women just don’t enjoy sex that much. That’s the pervasive belief in our society. And women who do enjoy sex are often penalized. We aren’t supposed to enjoy it, after all. We are supposed to be enjoyed. We are objects, not subjects. I still remember vividly an encounter in my recent past, when I had multiple orgasms and my husband had none. I was apologetic! But he had no regrets. He simply smiled and said he was glad I enjoyed myself. He’s a true man, someone who understands that sex is a two-way activity, an encounter between two participants, not between a subject and object. How does this belief play into the diagnosis and treatment of dyspareunia? In every way. My own story serves to illustrate it.
I had my first Pap smear at age 18. I was a virgin, but irregular periods plagued me and so I wanted to go on the Pill. The exam was torture, but every year I went back. My gynecologist was unconcerned, blaming me for not relaxing. She never gave me any tips on how to relax, never suggested anything to try to make things less painful, even when I almost passed out from the pain. My gynecological history post college was sporadic. Still a virgin, I went on and off the Pill, only getting a couple of Pap smears. Each time it was excruciating. I didn’t use tampons – too painful. But I kept that a secret. My doctors assumed that I didn’t enjoy insertion because I wouldn’t relax – that it was my fault, not something beyond my control. After all, women don’t enjoy sex, why would they enjoy an exam?
Prior to my marriage, I went to a friend’s gynecologist, highly recommended. I shared with her my pain issues. I asked her specifically to determine whether there were any reason why sex would hurt (I was still a virgin). This was her chance – her opening to discuss dyspareunia with me, to talk about different causes for pain in the vagina. Surely my medical history, my fear of tampons, and my simple reaction to the exam should have clued her in. She told me to relax because there was nothing wrong with me.
Why did this doctor not even mention the possibility of actual physical conditions that could cause pain during intercourse? Why did she assume that after 11 years of pain during vaginal exams I would be able to relax? I guess she figured I would learn how to grin and bear it, like many women do.
Because of her bad advice, I went to see a therapist immediately after my honeymoon, convinced I was mentally screwed up. After all, physically I was fine, right? When my prescription for the Pill ran out, I went to see a new doctor, a nurse-practitioner who specialized in seeing rape victims. I knew she would be sympathetic. She gave me a tranquilizer to take prior to the exam. It did nothing – my blood pressure was through the roof and I winced at the moment of first contact. And that wonderful woman sat back and told me I needed to see a physical therapist.
The discovery that there actually was something physically wrong with me – that I was incapable of relaxing – that was a turning point in my entire life. I had never heard of vaginismus, vulvar vestibulitis, dysparaunia, etc. I didn’t know that walking around with a constant Kegel was abnormal. (To this day I still catch myself in “locked and loaded” position). Finally I was able to clear the self-blame and self-doubt that was tormenting me and my marriage. I had a physical problem!
I still listen to women who have bought into the lie that we don’t enjoy sex. They say that their vaginas are too small. They say that they don’t enjoy orgasm. They continue to engage in sex that is unfulfilling. I was teaching a group of high schoolers about sex and counseled them to stop having intercourse if it hurt. They all looked at me blankly and then asked why. I was horrified.
We are not sexual objects. We are sexual subjects. I am currently pregnant with my first child, a little girl. A girl conceived during pretty fantastic, orgasmic sex. (Sure, it took 6 years, 3 physical therapists, and surgery, but it was WORTH it). And one of the most important things I hope to teach her is that sex feels good. And if it doesn’t feel good, she will have to be her own advocate and work tirelessly to find the cause and the solution. I hope that the world will have changed somewhat by then – that the medical establishment will have a better understanding of sex as something that is designed to be enjoyable. For anyone.
Tags: addiction, blogging, compulsion, experts, Feminism, lady porn day, medicine, pornography, psychology, sex, sex education, sexology, sexual health, Sexuality
February 22 was Lady Porn Day, a blogging event organized by Rachel Rabbit Write. This is the same blogger who, last year, organized “No makeup week.” In this case, “Day” is something of a misnomer, as today is actually the last day of the week-long Lady Porn event. (A good thing, too, considering my recent writer’s block.) In an interview with the Huffington Post, Write said the purpose of Lady Porn Day was to, “Essentially to celebrate porn and masturbation. I’m inviting everyone to talk about their porn experiences, share stories and to ultimately share their porn recommendations. This is about not only opening up a dialog about how porn is good, but also how porn is hard, how it can be an issue for women, in terms of dealing with guilt or body image or their sexuality.”
What’s been on my mind for awhile and has finally been knocked loose by this event is the subject of pornography and sex therapy. I’ve been thinking about this topic because I’m seeing a conflict between sex therapists who embrace pornography as a healthy & valid part of human sexuality vs. those who view it as the source of all kinds of sexual problems. Sex therapy is a possible treatment option for some folks with sexual dysfunctions and problems, so clients could find themselves in the middle of a political, academic & psychological tug-of-war between experts.
I’ll show you what I’m talking about, but with a caveat: you must bear in mind that I myself have not had sex therapy and I have absolutely no desire to do so, to the point where I’m actually quite resistant to sex therapy as a treatment for my dysfunction.
Whether or not sex therapists and sex educators are pro-porn or anti-porn looks to me like it’s largely a function of their own personal politics.
Notable sex educators who have articulated porn-positive arguments include the following:
Dr. Marty Klein is a long-term sex therapist and author who is very much anti-censorship and who consistently defends the use of pornography. He does identify as feminist and is clearly pro-choice; however one theme I’ve noticed in some of Klein’s writing is that he is critical of feminism – or at least, select vocal feminists and feminist groups. Oh well, so am I.
Dr. Leonore Tiefer, a feminist sexologist who is highly critical of female sexual dysfunction and so spearheaded the New View perspective of FSD (a perspective which I myself am highly critical of,) likewise recognizes a valid place for pornography in women’s sexuality.
Jessi Fischer is a sex educator who you may know better as The Sexademic. She recently got into an academic debate about pornography, opposite Gail Dines and Shelley Lubben – two notable anti-porn activists. (Each side of the debate was joined by additional activists, so it wasn’t just Fischer Vs. Dines & Lubben.) The pro-porn side of the debate came out on top – the audience members voted on who made the more convincing argument and decided it was Fischer’s team.
Dr. Carol Queen, sex educator with GoodVibes, wrote a post in favor of porn and Lady Porn Day – which makes sense considering her involvement with instructional & graphic sex videos. Most porn is not for educational purposes, but there’s some out there that is.
Nonetheless, porn-positive activists can be critical of porn. Pornography can, and often does, have problems. Criticisms of porn from sex-positive therapists may consist of something like, “This element is good, that element is neutral, and if you will look over there there, there is the element is the inherently problematic one that needs fixing.” And the element that needs fixing may be something like, the marketing of porn rather than the content itself. A great example of this took place a few weeks ago when actress Nicki Blue elected to film her first vaginal intercourse experience for the pornographic website, kink.com. The initial marketing for Blue’s film shoot was highly exploitative and inaccurate.
But I’ve seen activists, educators and licensed therapists go in the opposite direction too, and come down hard against pornography. Often this stance against pornography is lumped with a warning against sex and masturbation addiction – which is another extremely controversial topic. However, I’ve repeatedly seen more acceptance of the term “Compulsion” instead of “addiction” to describe obsessive sexual behaviors, to the point where such behaviors interfere with someone’s personal or sexual life.
Dr. Mary Anne Layden is a clinical psychotherapist and Director of Education at the Center for Cognitive Therapy, part of the University of Pennsylvania. In 2004, she went before the US Senate to talk about the so-called dangers of pornography. In another interview with the Washington Examiner, she talked about the process of becoming addicted to porn when she said, “There’s always an escalation process. We don’t know what the threshold is, and those with addictive personalities will start it earlier. But I see a lot of people who didn’t show any psychological problems before [viewing porn].”
Jason McClain is a UK therapist who considers himself to be a former porn addict. He runs an organization, Quit Porn Addiction, and now he counsels clients who likewise want to break away from porn.
Dr. Alvin Cooper is a sex therapist and director of the San Jose Marital & Sexuality Center who contributed to a documentary, A Drug Called Pornography. According to the linked synopsis, this film’s thesis is that, “Pornography is an addiction. Its effects on users and their loved ones are just as habit-forming and destructive as heroin, tobacco, or any other addictive agent… The program features disturbing interviews with pornography addicts, many of whom are convicted sex offenders. They talk frankly about how pornography affects their psyches and systems, coloring all their activities and relationships.” And according to this Time article, Cooper also gives seminars about addiction to cybersex.
In addition, Googling search terms such as, “Sex therapy addiction” or “Sex therapy porn” brought up many, many more results for therapists and organizations that prominently feature treating sex and masturbation addiction among their services.
I am confounded, though not surprised, to see that sexuality experts with licenses, teaching jobs and more credibility than me have not come to a unified agreement on porn’s place in sex therapy. It’s not surprising that sex therapists haven’t come to a standard approach on how to deal with pornography, because there’s precedent for a lack of resolution: Pro-and-anti- porn debates in politics, academia and feminism remain unsettled.
But it is confounding, because who am I supposed to believe, and why?
Actually, I have been convinced by the arguments of the porn-positive side. I especially appreciated Violet Blue’s analysis of the for-profit agenda of major anti-porn activists. This analysis, and others like it, also note that anti-porn rhetoric is also often anti-masturbation – a healthy sexual activity. There are numerous other arguments in favor of pornography that I have heard which have contributed to my “Up with porn” POV… the only reason I’m not getting into them right now is because it will take too long to document everything.
Though I’ll also admit that most porn has problems which could and should be handled better (but won’t,) and, like just about any other tool, it can be used for the forces of good or for evil… and everything in between.
(Plus I’ll admit to some potential bias – I have a subscription to a porn site which I regularly check on. I have not noticed any ill effects from doing so…)
So there’s a couple of scenarios with regard to porn use that I envision as potential problems in a sex therapy setting. While I have no experience with sex therapy myself, I nonetheless speculate that these scenarios have probably come up before many, many times in clinical practice. So I would be surprised if practicing therapists and educators didn’t have tools in place to address such situations. How could such conflicts not come up?
The problem is, because so many google search results for “Sex therapy addiction” or “Sex therapy porn” result in facilities looking to treat addiction to porn & masturbation, I am not able to find out what these client-therapist conflict-resolving tools may be. The search results are too bogged down with stuff I’m not looking for. (Little help? Anyone?)
One of my concerns is with regard to pornography and sex therapy is that if you’re entering into a therapeutic relationship with a licensed professional, there’s inherently going to be a power imbalance. The therapist has probably had more exposure to educational materials, which may have their own biases & agendas. You and your therapist are probably going into that relationship with some ideas about pornography to begin with. If there’s a match between your beliefs and your therapist’s, then in terms of personality you may not have a problem, and you may be able to swiftly work out a plan of action. But if you and your therapist have conflicting beliefs about pornography as a tool in your sexuality, then you may have a problem.
So what happens if you are someone with a sexual problem or dysfunction who just happens to have a history of porn use? If you find a sex therapist who is anti-porn, will your previous or current use be zoomed in on as the source of your problems to the exclusion of other contributing factors?
Or what happens if, due to the conflict between you and your therapist re: use of porn in sexuality, you decide to find another therapist? That may be possible, depending on your geographic location. Finding a good therapist may take time and transportation, depending on where you live and what sort of resources are available in your area. Checking my own local area via the American Association of Sexuality Educators and Certified Therapists, I was surprised to find one licensed sex therapist! The next “Local” one, though, would be about 45 minutes away by car – not exactly the worst commute, but certainly not convenient, either. Finding Kink-aware therapists may be another option.
I’d like to imagine that sex therapy may be easier to provide now and in the future though, thanks to technology like Skype, though this is speculation – I do not know if there are any therapists willing to use this remote communication service with clients. But, hypothetically, if I were very unlucky, then I might be stuck with a therapist I don’t agree with, or no therapist at all.
Basically, for Lady Porn Day, like many bloggers my concern is what happens to the porn users and their partners who are stuck in the middle of it all. This conflict between professionals is unlikely to be resolved any time soon. The most neutral article about porn use in a relationship was this one from About.com, which says, in the end, “Whether or not pornography will add to or lessen a couple’s sexual enjoyment is up to each couple.”