On studying the patient’s feelings

10/26/2008 at 10:14 pm | Posted in Uncategorized | 1 Comment
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Note: This is technically part 1 of a post that got too big to be 1 entry and so I split it up. See This one for the part 2 or just scroll up.

When I was diagnosed with vulvodynia and suspected vaginismus, I spent a lot of time researching these topics. Luckily for me, it was 2006 and not 1996, so there were already some resources I could find online. Unfortunately, it was 2006 and not, 2008, so there weren’t quite as many as there are now. I needed to find out as much as I could in order to make informed choices about treatment, and to find out more about what to expect in the future.

I found some online support groups, some websites reiterated the most common information, a very few books, and hundreds of scientific journal articles. I was a student college and so I had access to some of the online journal databases.
By now my school has eliminated access to some of the databases I’d been using, due to budget cuts and what not. A side effect of the shrinking economy.

Of interest to me today is some discussions about the emotional turmoil women with FSD go through. Again, I’m partial to the pain disorders since that’s what I’m most familiar with.

Take, for example, “Vulvar vestibulitis – evidence of depression and state anxiety in patients and partners,” by E. N. Lundqvist and J. Bergdahl. This study examined women with vulvar vestibulitis and how it affects psychological-well being. It asked a sample of 30 women (and some of their partners) to answer questioniarres about their body image, activities, emotional state, and the like. The authors concluded that women with VVS described having higher states of anxiety & depression than a control group. It was unclear which came first, the pain or the depression. Correlation does not mean causation…

A scientific study… about the emotionatl turmoil that women – and their partners – go through when they deal with vulvodynia and the like.

Someone actually needed to do an investigation about this. Someone actually needed to do an investigation about this? Someone actually needed to do an in-depth investigation to figure out how women feel about FSD?

On the one hand, it seems silly to me that we need studies revealing this. “Having FSD makes women feel bad when it comes to their sexuality. Hmm. Who knew?” Isn’t it obvious?

But on the other hand, there needs to be more studies like this because, Appearantly there is a need for them. It seems obvious to me, from what I’ve seen & the other women I’ve talked to, that having sexual problems can make you feel pretty bad.
And this particular study, the Lundqvist & Bergdahl one – it admits to being one of a relatively few that actually does examine the psychology of women with vestibulitis. Additionally, the other studies available at the time of writing did not consistnetly come to the same conclusion as these authors, that is, that vestibulitis can have a significant impact on one’s state of mind & well-being.
Thankfully this disagreement may mean that having FSD does not guarntee that you will have to become depressed & anxious. It’s not a given.
The study did agree with some other studies that having vestibulitis can put quite a damper on one’s libido & sex life (Gordon & Panahian-Jand, 2003). Which, I suppose, is to be expected.

Studies like this try to quantify the emotional response and gives guidance to doctors on what they should expect when treating FSD patients. And the studies let patients know that what they are feeling is probably normal. You are not alone. The studies can offer recommendations on ways to reduce negative feelings or direct patients to counseling, where needed. In this way, the studies can be useful.

However, sometimes the studies themselves can be distressing. The research is valid but the way it’s presented inclines doctors and patients towards doubt. Take, for example, a one study titled, “Psychological difficulties within a group of patients with vulvodynia.”

The study asked women with vulvodynia and women in a general dermatogical control group a series of questions to get a feel for how they were doing & what behaviors they were engaging in – seeking out the maladaptive ones. This study eventually concluded that women with vulvar pain conditions & dermatoses did report higher levels of depression & anxiety… but also that they engaged in more somatization, obsessive-compulsive behaviors, exhibited more hostility & paranoia & interpersonal sensitivity.

“Somatizing?” “Obsessive-compulsive?” “Hostility and paranoia?” Harsh words, all with rather negative connotations. I see the somatizing topic come up in journal articles from time to time. Somatizing can be loosely translated as making a symptom appear in the body where there is no reason for such a symptom to exist. The body responds to the mind by presenting a problem. Often it is expressed as pain. It’s a term I associate with Sigmund Freud, a figure frequently (and deservedly) critiqued in the fields of feminism & psychology.
Of course it may simply be that women who have experienced painful problems like vulvodynia or vaginismus, are more in tune with their bodies & so recognize real symptoms even when they are very mild. I dare not tune out warning signs of possible vaginal infection for fear of relapsing.

Some parts of the study were okay. It disclosed its methods & subjects & the kinds of questions asked. It agrees that where we cannot know whether the cause for pain is psychological or physiological, a multi-pronged approach is in order. I agree that psychological & sexual counseling can have a place in sexual healing. Key word being, “Can,” as in, doesn’t have to be; it can be a good option for some folks but that’s going to depend on the individual or couple and the counselor. I’ve heard some horror stories about sex therapists who said some pretty alienating statements to their patients. Thus defeating the whole purpose of sex therapy. The study also agrees that we really need more feedback from patients themselves on what it’s like living with FSD.

We can once again argue semantics on how the questions were structured and what wasn’t asked. The questionairre examined, for example, the degree of hypochondria, denial, and irritability. Would the results have been different if the questions were better equipped to figure out sensitivity to bodily changes, acceptance, and coping skills?

There was another part that really stood out for me personally, where the authors state,

“Whilst we are aware that some field workers have remarked that after a physical or surgical intervention the pain levels do not return, this does not explain how the high level of co-morbid psychological distres would resolve spotaneously. Even when there is an organic contribution to the pain… it is likely that the underlying psychological traits may result in emerging and different symptomatology at a later time.” (263).

Which I very loosely, translate to, “We believe that relatively few cases are physiological in nature and that even when they are, the patient probably still has some underlying psychopathology that she needs to let out by making up stuff.”
Welp.
One question that comes to mind is “Who are these ‘some field workers?’ How many? What kind of field workers?” This is not addressed. Then,
After I had surgery & started to see improvement, my mental health just took off. I went from being pretty bummed out & nervous most of the time to feeling, pretty good about myself. I felt more confident & hopeful. I felt like I dropped a load of weight all at once.
Admittedly, it probably helps that I had surgery right as college ended, so I also never had to go back to school ever again. And it may be worth noting here that I always hated school.

Yet I’m seeing another increase of this mood improvement effect now with physical therapy, since I’m making swifter progress with that. The first time I was able to use a 1 & 1/2 inch wide dilator for the first time, I smiled, for a month. I could not stop smiling. Nonetheless, I still have some discomfort – a LOT less discomfort. We are talking probably about a 90, 95%% improvement I’d say.
So yeah, there’s a pretty good chance that I’m always going to complain at least a little about having pain during sex, because chances are there’ll always be some. Key word here, some. As in, well within my tolerable levels & worth it.

The author’s assertation here also makes it sound like any subsequent physiological problem is still going to be psychological in nature, just another somatization. Thus ignoring the syndrome overlap the vulvodynia family is sometimes noted for and also making it harder to get treated for unrelated real health problems that can spring up later in life. Appearantly the authors feel that even if you successfully treat FSD, the patient may still just make up some other problem later in life. If my future doctors buy into this idea, I may have a hard time finding relief from disease or pain I may experience later on in life. The thought of this alone is enough to cause some anxiety in me.

…But then what else should one expect from the, Journal of Psychosomatic Obstetrics & Gynaecology. A journal just about women who somatize re: their reproductive organs.
I’d like to believe that such a journal has a small subscriber list and that relatively few med students actually read it on a regular basis. I’d like to, but,
I have a feeling that my first gynecogist probably subscribed to that journal.
He thought it was all in my head too, but my vulva’s biopsy results begged to differ.

This particular study, it just seems weird to me. Something is off. The women in the study were diagnosed as having either vulvodynia or other vulvar dermatoses – real, valid diagnoses. And we know from other studies & Dr. Glazer’s book that if you have one thing, there’s a pretty good chance that you’re experiencing some overlap with another chronic condition of some sort.

It just looks to me like the study is set up in such a way that it will quite deliberately bias doctors against taking FSD patients seriously when they complain of symptoms. “Oh it’s all in your head, you need to relax and have a glass of wine and get laid. What you’re feeling isn’t real, you’re making it up becuase you’re stressed out. Hey why are you looking at me like that, why are you getting so angry? Don’t get so uppity. Don’t be so hostile & paranoid. Nurse, next patient please.” Rinse & repeat.

Which, if you’re an FSD patient, there’s a pretty good chance that this is exactly the stonewall you’ve encountered when looking for a good & smart doctor.
It doesn’t have to be that way.

There really are some good & thorough doctors out there who are familiar with FSD and are better prepared to treat it. There are some doctors who have done their homework and do not dismiss the emotional or physical sides of FSD.
The trick is finding them… which can turn into a trick & a half depending on your income levels, where you live, if you have insurance, etc. And it will depend on the individual doctor & what studies they put more weight into.

And then we move on to the personal… my own account of the emotional aspects.

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  1. […] psychology Note: This is technically part 2 of a post that got too long to be 1 entry. See this thing or scroll down below for the first […]


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