Wednesday, July 31, 2013

Six Weeks!

I've reached my six week mark (six weeks post-op) and I'm up and about now. I'm able to walk and resume most normal activities (with the exception of strenuous activities like exercising, dancing and so forth). I have been feeling some pain when walking for a while, and I'm not sure if that will dissipate over time or whether that has to do with my pulling on the stitches (which do not seem to have all dissolved as of yet).

I am looking forward to my appointment with Dr. Goldstein, and I'll let you know what he tells me when I see him!

Wednesday, July 24, 2013

Sex & Pain: Audio Class on Sexual Disorders, Unconsummated Marriages, Mindfulness and Couple Dynamics

Dr. Tammy Nelson (sex therapist and sexologist) and Talli Rosenbaum (an AASECT certified sex therapist and physiotherapist) have put together a teleclass on Sex & Pain. The class is divided into two parts. Part One is entitled 'Understanding and Treating Sexual Pain Disorders' while Part Two is 'Exploring the Dynamics of Anxiety and Pain: Unconsummated Relationships and Sexual Aversion.' It costs $99 to download and is a two hour class. It is approved for two AASECT CEs. Please be aware that in exchange for writing this synopsis and review, I was able to listen to the class for free.

My impression of this class is that it is sophisticated enough that someone who is entirely new to sexual dysfunction (someone who has just been diagnosed) will not benefit from listening to Part One (the first hour). For example, the two doctors mention dilators and dilation without explaining that this is a form of therapy for those who are diagnosed with some type of pelvic floor dysfunction (such as vaginismus) and simply assume that you are familiar with this course of treatment. I do think that Part Two (the second hour of the class), which focuses on unconsummated relationships, fear, anxiety, shame and embarrassment, awareness of sensations, self-pleasure (not even sexual self-pleasure, necessarily) is of benefit to anyone who is currently in an unconsummated relationship, and that any layperson can listen to and benefit from this section. The entire class (both hours) is of great benefit to someone who either has a medical background or is a layperson who has already begun a course of treatment, is in the middle of a course of treatment or has concluded a course of treatment but wants to learn more about sexual dysfunction.

Let me caution you that the first hour of the class really hones in on pelvic floor dysfunction and vaginismus primarily, and not so much on vestibulodynia (the condition that I have). Primary vestibulodynia, specifically the congenital kind, which I have, did not respond to these treatments, mainly because the treatments discussed by Talli and Tammy hone in on the mind-body connection with the pelvic floor muscles, while my issue is with the nerve endings. That's why I ended up having a vestibulectomy (a surgery to remove the vestibule). So if you have primary vulvodynia or vestibulodynia, you may not find this class so helpful to you personally, although it does provide an interesting overview and treatment approach to other types of sexual disorders centered in the pelvic floor. Therefore, I think the title 'Understanding and Treating Sexual Pain Disorders' is misleading and overly broad, because the focus in the lecture was only really on pelvic floor disorders, and not on what to do if one is suffering from primary vestibulodynia, pudendal neuralgia, endometriosis etc. That having been noted, one of the benefits of the class is that the doctors do discuss mind-body connections, issues such as strategies to rekindle or recover a sexual relationship after cancer or childbirth, and hone in on problems to do with terminology and language (such as "success" and "failure" and achievement) and the importance of resisting goal-oriented intercourse. They also focus on the importance of including both members of the couple in the therapeutic process, and refraining from pathologizing the female partner. I loved the second hour of the class, which focused on 'Unconsummated Marriages and Sexual Aversion.' I learned a lot of information that I did not formerly know about role identity, couple dynamics, treatment options, distress levels and how it affects couples, and I was fascinated to learn that there are so many different reasons behind why people find themselves in this situation and their reasons for coming in for treatment (it could be different from what you would initially assume!)

Both Tammy and Talli are sympathetic, kind women who speak very clearly and articulately about the issues. A quote early on in the lecture from Talli emphasizes this, when she says, "When we are giving education about sexuality, it is always obvious to us that sexual intercourse cannot occur without the male erection, which would include male arousal, yet we don't always educate women that physiologically speaking, the best conditions for intercourse for women are that they also need to have their arousal, their quote unquote erection." While Talli is speaking about the fact that some women simply do not know that they need to be aroused and lubricated prior to intercourse, I think this idea really resonates with women who are experiencing sexual dysfunction. In many cases, just as penetrative sex is not possible without an erection, penetrative (and sometimes even other types of sex) is not possible for women who are in pain.

Talli explains that there are many causes for painful intercourse. She lists sources of pain including insufficient arousal or lubrication, yeast infections (transient causes), dryness as a result of decreased estrogen levels that occur with menopause, skin conditions, the muscles of the pelvic floor tightening up as a response to pain (causing intercourse to be even more painful), vaginismus, provoked vestibulodynia (may be caused by hormone changes, often a result of using oral contraceptives, or alternatively nerve fibers increase at entry to the vagina, which is the kind Dr. Goldstein believes I have). She explains that the word 'dyspareunia' simply means painful intercourse; it does not explain causes.

Talli then talks about the way sexual pain disorders are characterized in the DSM (the diagnostic manual). Sexual Pain Disorders have classically been divided into vaginismus and dyspareunia. Vaginismus implies a "fear-based, reactive, inability to allow vaginal penetration." Vaginismus has to do with fear, anxiety and the tightening of the muscles. Dyspareunia generally implies that intercourse can occur, but it's painful. There are have been new recommendations for the DSM-V to lump it all together and not distinguish them. However, Talli claims that "Both dyspareunia and vaginismus have been associated with physical pain as well as psychological characteristics of anxiety, fear, aversion and disgust." She explains that nowadays sexual pain disorders are considered multifactorial. She notes that decreased self-efficacy, catastrophizing and anxiety have all been associated with sexual pain disorders. (While I had many of these thoughts/ problematic coping strategies prior to discovering I had sexual pain, this is probably part of the reason that Cognitive Behavioral Therapy was so helpful to me.) She implies, especially when discussing social responses (such as negative thoughts, feelings of guilt etc) but does not state clearly enough, that sometimes these occur because of the physical manifestation of pain. Luckily, Tammy steps in and clarifies that sometimes this can be a very circular process, as depicted in the following diagram taken from Dr. Goldstein's slideshow on this topic.

Talli provides clarity regarding how a patient should proceed given the many factors needed in their treatment. Given the fact that sexual pain disorders present with both physical and psychological components, it follows that a patient will probably need treatment that addresses both of these areas.
She explains specific benefits of physical therapy which might not at first be apparent to a patient considering this form of treatment. She also outlines exactly what the pelvic floor is, where it sits, and why physical therapy can be beneficial in these circumstances.  She offers a model where a physical therapist will focus on the pelvic floor while a sex therapist focuses on the couple's issues, however, she also highlights problems with that model. Chief among these problems is that it compartmentalizes the patient, while Talli believes that the pelvic floor and its contractions are related to a woman's emotional state, and therefore has to do with psychology. Therefore, she prefers a more integrated model. She cites studies that support the idea that there is a link between pelvic floor reactivity or tightness and psychological traits.

Talli is a proponent of a mindfulness approach that focuses on the conflict between the cognitive side (the woman who comes to the doctor and says, "Please help me and do what needs to be done; ignore my responses and put the dilators in") where she is dissociating during the process and the emotional/ psychological side (where the patient is expressing anxiety or their muscles are tightening up). Talli would start very slow and build up, and start with opening legs, then opening legs without a blanket on you, and then without your pants on, and would have the patients note during this process of gradual exposure, where their level of anxiety is. She asks practitioners to avoid infantilizing their clients by cheering them on for putting in dilators, especially because the patient needs to have her own autonomy and set her own boundaries. She mentions the need to empower women rather than urging them to relax and submit.

I can only speak from my own experience here, and I have a mixed response to this. On the one hand, when I went to the Center for Medical Sexuality in Manhattan and was incorrectly diagnosed with vaginismus, it was empowering for me to have the dilators slide inside me and realize that I could do it even if it hurt. I think if I had spent my time checking my anxiety levels and slowly building up, I would simply have wasted even more years of my life without a solution, making what I thought was progress, but what in fact, for me, was not. For me, pelvic floor therapy (which I tried after my time at the Center) was entirely unhelpful (although at first, I incorrectly thought it was helping, probably because I really wanted to feel like I was making progress) but that's because I have the congenital version of vestibulodynia, and hence my muscles are not the problem- my nerve endings are. My concern with the mindfulness approach is that if you focus in on the patient's anxiety to this extent, then the opportunity for spending an extended period of time living with a misdiagnosis triples. I walked into Dr. Goldstein's office convinced that I was suffering from anxiety, clenching my muscles too hard and causing my own pain only to discover this wasn't my fault and that this was a physiological issue beyond my control. So I would say that I personally am in favor of going to someone like Dr. Goldstein in order to ensure that you receive the correct diagnosis first. Only then, if you have a pelvic-floor-based disorder such as vaginismus, would the mindfulness approach be appropriate for you.

Tammy raises the possibility that women who experience sexual pain are often diagnosed with trauma (such as having been sexually abused) and Talli counters that actually, it doesn't even need to be a sexual trauma. If having sexual pain causes you to feel out of control, you may be triggered and respond as you would in a different situation where you feel powerless or out of control, or a prior trauma. This is an interesting theory when it comes to looking at how different women respond to sexual pain. For instance, my first response was denial that I was even in pain, while my husband obviously was aware that I was in intense pain and was the one who decided I needed to see my gynecologist (I had not even wanted to take that step) and begin our journey. It makes sense to me that the reason I denied I was in pain had a lot to do with my tendencies towards perfectionism (and at least, to be 'normal' or 'typical,' having had issues with being an outcast as a child) and my fear that if I did indeed have this type of pain, that would make me abnormal, putting me back into a situation I had thought I had outgrown.

Talli & Tammy then get into the couples dynamic and how that is impacted by sexual pain. Tammy notes that  in her experience, the husband or male partner has the hardest time getting back into sexual intercourse because they are so afraid to hurt their partner again. The two discuss strategies that the couple can use to move forward. Talli identifies the need to cope with the feeling of loss - there's something that was, that now is no longer (in a situation where cancer or childbirth or something like that has changed the sexual dynamic, so a secondary cause), which is of course different from a situation like mine (with a primary cause), where we never had a typical sex life to begin with. Talli also mentions the amazing benefit sex therapists can play in allowing the couple to incorporate sensual exercises to take the focus off of intercourse (something which my husband and I did try, and which was helpful at that point in our journey).

Talli works with the Orthodox and ultra-Orthodox Jewish population, which, while being very sex-positive, forbids premarital sex. She talks about the added anxiety in this faith-based culture due to the fact that it's a mitzvah to have sex once married, and therefore if a woman can't, she feels like she is failing in this religious way as well. Tammy counters by saying that in the United States, she is more familiar with the population of people who won't have sex due to lack of desire or interest rather than couples with unconsummated marriages due to physical pain or anxiety. She focuses on the need to figure out where the distress is coming from when a couple comes to see the sex therapist. She also focuses on the need to not bring in their own bias as sex therapists (some couples may be happy not having sex). It can happen that one member of the couple is distressed and the other is not, which is what will cause difficulties. Tammy notes that this appears when couples come in with desire discrepancy.

Talli and Tammy explore the experience of couples in unconsummated relationships, and offer strategies for how to help these individuals. She says that generally when people come in with an unconsummated relationship, it is assumed that the problem lies either with the male (erectile dysfunction or premature ejaculation) or the female (vaginismus or dyspareunia). She cautions, however, that there is more to consider.  It could also have to do with simple lack of information- no understanding of what to do and how to do it. Sometimes, there can also be communication problems due to not knowing terms for one's anatomical parts. And she mentions that this is not limited to faith-based cultures, and that it can happen with individuals who are completely Westernized who simply did not receive a good sex education. OCD, aversions, tactile issues, sexual orientation and certain mental illnesses can also play a role.

I really enjoyed peeking into the mind of the therapist during the second hour, and seeing what kinds of behavioral interventions and strategies they might give, and what they look out for in terms of couple dynamics. There was a focus on the diversity of the patient population who appears, and what each couple wants, the interplay of the cultural and religious issues and's sociologically super interesting. I thought this hour of the lecture was absolutely fascinating, but I'm not going to dish out details, because you should purchase the lecture and hear it directly from the source!

Wednesday, July 10, 2013

Slideshow on Medical and Surgical Treatment of Sexual Pain

Warning: Do not look at this slideshow if you have not already seen Dr. Goldstein and/or if you are afraid of graphic, vivid pictures and depictions of the vagina.

I found this great slideshow (click here) that Dr. Goldstein put together called "Medical and Surgical Treatment of Sexual Pain" which goes through the possible treatments, the different types of sexual issues one might be facing, and then shows what a vestibulectomy would be like. I find it helpful and comforting to look at, but probably not everyone would.

Wednesday, July 3, 2013


I've been thinking about sex. Specifically, I've been thinking about how, for me, sex was disastrous.

I didn't grow up on a steady diet of TV; in fact, it was monitored by my parents. But once I was out of the house and on my own, I watched a whole lot of TV. I've seen tons of sex scenes in tons of movies and TV shows. And as a virgin, my only experience for what sex would be like or should be like was what I saw on TV.

Yes, my Kallah teacher warned me that it was likely to be messy and even somewhat uncomfortable or unpleasant the first time. She also made sure to explain to me about the importance of foreplay (but I had read plenty of books on the topic, so I knew about that). My big problem was that I was held captive by my expectations, expectations that didn't pertain to my husband and what he was supposed to do for me, but rather, expectations that pertained to me and what I was supposed to do for him.

In my mind, the perfect wife needed to walk a line between the angelic ingenue and the sexy vamp. She should be able to dress up in a lacy white teddy or vamp it up in spiky black sandals and some lowcut black lace. She should be able to give off airs of both innocence and experience. She should make sure to be vocal and make her husband feel like he knows exactly how to please her. She should focus on her moves and do everything she can to appear enticing.

In sum, she should be so busy thinking about what she is doing that she isn't experiencing it.

Obviously, struggling with sexual dysfunction threw a huge wrench into the works. I couldn't pretend to enjoy something that caused me excruciating pain. But it was my therapist who helped me to discover what I was doing wrong with sex: I was layering so many expectations onto myself that I ended up burying myself in them. I was focusing so much on how I appeared to my husband (physically, verbally, with my moves etc) and not on whether or not I was enjoying what we were doing.

My therapist pointed out that I certainly wouldn't enjoy sex if I didn't engage with my husband and tell him what I liked and what I didn't. So what I discovered was that if I left it all behind- abandoned the pretense of being the innocent good girl or the vamp, and just focused on being me- intimacy could be a lot sweeter, even sexier. And when I wanted to dress up as the good girl or the bad girl, I could, but that would come from my desire, not from my feeling like this was the expectation, and that I existed only to please.

We hear so much on TV about the importance of being "good in bed" that we are terrified and worried that we might not be. We put pressure on ourselves to fake it, to pretend we are just as knowledgeable, just as experienced, but in truth...especially if we waited to have sex....this is all new to us. And the goal shouldn't be whether or not some other person thinks we're good in bed. The question is: are we having fun? are we being honest with each other? is this enjoyable? If those things are in place, we're in a good situation.

Once I shed all the skins of trying to fit into the images of sexuality that I had, consciously or not, been provided with, things got better. No, I can't have penetrative sex. But that doesn't mean I can't be intimate with my husband. Or that I can't enjoy it. There's more than one way to have a happy intimate life.

Monday, July 1, 2013

Turned A Corner

I'm happy to say I've turned a corner. Actually, Day 11 is when it happened. Starting on Day 11, I felt a lot better (thought not perfect). Now, almost at the two-week mark, I'm doing really well. I was even able to stay on my feet long enough to make myself some pasta today, which is great.

Hopefully, the recovery continues to go well and the healing process is also going well!