PATIENT AWARENESS DAY 2018:
LIVING YOUR BEST LIFE WITH ENDO
Sunday, March 18, 2018, (8am-5pm) Einhorn Auditorium (131 E76th st) at Lenox Hill Hospital, NYC
Endometriosis and Sexual Functioning
Carli Blau, LMSW, MEd., MA., Ph.D. Candidate
Good morning everyone. So I get nervous when I public speak, and I'm a firm believer as a therapist myself that I should say that, so I feel better.
So thanks for taking me as I am. So today I'm going to talk to you about endometriosis and sexual functioning. That's actually something that we all may do or have done, and quite frankly, if someone hasn't done it at some point, we all wouldn't be in this room. So we're going to talk about how endometriosis affects our sexual functioning. Today the goals for my presentation are to talk about how endometriosis affects your sexual functioning both physically and psychologically, as well as learn how endometriosis affects your intimacy and your relationships, and how sex therapy, in particular, can help a patient with endometriosis. Okay, good thing I brought one. Endometriosis can actually cause physical discomfort as we know, but it can also cause sexual dysfunction. What I mean by this is, and what we're going to talk about are dyspareunia, including deep and superficial dyspareunia, chronic pelvic pain, including pelvic floor spasms, vaginismus, vulvodynia and a lack of vestibular lubrication, and how all of these different sexual dysfunctions can be in progress at the same time or separately, and how they impact our lives sexually. Dyspareunia is actually one of the most common symptoms of women with endometriosis and what's really interesting is that it's actually one of the most commonly described complaints among patients who go for laparoscopic removal of endometriosis and excision surgery. The clicker is being very stubborn. Okay, so understanding dyspareunia, what is it defined as? It's defined as vaginal or vulvar pain during or after sexual intercourse. So dyspareunia is actually four times more likely to occur in women with endometriosis when compared to women who don't have endo. And 60 to 80 percent, I mean that's a huge percentage, of women who receive surgery for endometriosis also exhibit dyspareunia as a leading symptom. So what do I want you to know about dyspareunia? I want you to know, and I found this great diagram that I use to help me, and when I say vulvar pain, versus vaginal pain, I found that this is something that many people don't know about, quite frankly, I didn't know myself, so vulvar pain, see where the area is highlighted in red? So the vulva encompasses the vaginal lips, the clitoris, the outer part of the vagina, right? But it's called the vulva, and many times we don't use the correct terminology. And the vagina is the inner part of the body. So you can experience dyspareunia in both places, but most likely, it's going to occur internally, and the reason why it occurs is because endometriosis and endometriosis tissue presents itself in parts of the body and where endometriosis presents, it typically causes inflammation and user discomfort. So when you can imagine penetration occurring, whether it be with a sex toy or with penile-vaginal penetration in both heterosexual and same-sex couples, you can imagine that if a part of the body that is inflamed is being penetrated, or pulsed or prodded, that that's going to cause even more pain and discomfort. So with dyspareunia you can experience it every time you have sex or any kind of foreplay, you can experience it sometimes, it can also be dependent on what is being used for sexual pleasure, all of these things play a role in what I call intersectionality.
The types of dyspareunia you should know about, there's two. There's superficial dyspareunia which is the pain that exists in and around the entrance of the vaginal opening, and deep dyspareunia, which is pain that exists deep within the vagina upon penetration and during deep penetration. And a thing for you to be conscious of that we don't talk about when it comes to sex is it doesn't just occur with penile-vaginal intercourse. There are many different ways that you can experience sexual pleasure or sexual experiences and activity that don't have to include penile-vaginal intercourse, that can cause dyspareunia. And that's something I want to bring to the room because it's something we really often don't talk about. So other sexual dysfunctions that typically occur in women with endometriosis is vaginismus. This is when there are painful spasmodic contractions of the vaginal wall in response to physical contact or pressure, especially with sexual intercourse or penetrative sexual activity. And there is vulvodynia. Vulvodynia, there is generalized vulvodynia and there is localized vulvodynia. Generalized vulvodynia is when there's pain at different areas of the vulva that occur at different times, and this pain can be consistent or infrequent. It can be prompted by touch and it can also be prompted upon pressure and depending on the pressure, it can be worse or it cannot be as bad. With localized vulvodynia it's pain in one area of the vulva. The way that I often describe this, and this might sound silly, but it's like if you sit in a pair of pants at your desk or someplace for a very long period of time, and you get up and ow, it kind of hurts, that one are that might be uncomfortable, that's how I would describe localized vulvodynia, that there's a specific spot of the vulva that is incredibly sensitive and it's often it's described it's like a burning sensation that is provoked by touch or pressure in intercourse or prolonged sitting or sexual activity and foreplay. So what I love to study in my doctorate right now is the psychological effects of endometriosis, because it's often times not what we really consider when we think about our diagnosis. What is really interesting is that women with endometriosis are actually more likely to developmental disorders, like generalized anxiety, depression, low quality of sex life, low sexual satisfaction, diminished desire, increased sexual dysfunction, and sexual anxiety. Now I want to put this into the room as well that I find it really fascinating that sexual anxiety as a term, is not something that has really been clinically defined. We talk about generalized anxiety disorder and how it impacts sexual functioning, but I am on a quest at some point in my career to define sexual anxiety as something that women and men experience, and people however they identify, experience in their roles. So this diagram doesn't always go like this, but I thought it presented a really great example of how the psychological effects of endometriosis take place. So what I want to offer is that, when we talk about dyspareunia, pain along with intercourse and penetration, it results in a fear of pain, right? No one in this room, can you raise your hand if you like being in pain? And some people do, right? As a sex therapist, it wouldn't be the first or the last time that pain could be pleasurable. So when pain comes with something like endometriosis often times, we don't like it. And I can tell you as a woman with endometriosis myself, I have a fear of pain regarding my endometriosis. And that pain comes with intercourse and sexual activity. So when a woman with endometriosis experiences dyspareunia or some kind of pain in regards to her endometriosis, that pain then produces more anxiety that can come with a sexual response, like the tightening of the vaginal muscles or pain upon penetration. And that then, we hunch up and we get nervous and we get tight, it's like when you know that someone's nervous, right, like me right now, you can tell it's like your shoulders might tense up, your body muscles tense up, and that also your vaginal muscles might tighten up. And that makes what really difficult? Penetration and sexual activity. So it's this never-ending cycle that tends to need some kind of treatment to stop the cycle and also the biggest part of that is allowing the patient to feel heard, right? Like to explain the cycle, to feel they're heard, and to understand that there is a way to stop the cycle from continuing. So as women experience a consistent pain, as women experience consistent pain regarding sexual activity, it actually stops them from wanting to engage in further activity. Which ultimately makes them not want to engage in any kind of sexual intimacy with a partner due to fear. And this is something that as a sex therapist I would see all the time, because like I said, when we experience fear or pain regarding something unless it's consensual, all right, why would we want to be engaging in that. And so when we know that if we kiss our partner or our partner touches our shoulder, and they want to engage in some kind of sexual activity, whether it be kissing or touching or sex, that if that's going to cause us fear, what do we do, we shut down. And this impacts people's intercourse in all relationships because it makes people not feel connected to one another, and that's where it really begins to impact both partners in a relationship, the person with endometriosis and also sometimes their partner. So this develops a negative sexual schema. And this is when there are negative thoughts that results from experienced pain that lead to negative schemas that present in the brain. And this is a consistent pattern of negative sexual expectations. So we have endometriosis, either we have a flare or the endometriosis tissue is on a specific part of the body that creates inflammation and pain. We know that if we have sex and it's in this certain position or this certain way that that's gonna hurt, and then we say nope, not happening, sorry hon, not in the mood, because that's just not an option. And that fear experienced emotionally shows in this further lack of desire, a lack of lubrication, pelvic floor spasms and vaginal tightening. I want to be clear that that doesn't always occur, but it does occur frequently. And these expectations perpetuate further sexual dysfunction and fear setting up this vicious cycle that we just talked about. So, many times with endometriosis as we know, the best way to get rid of it is through excision, right? Because the tissue doesn't go away unless we get rid of it. However, unfortunately with our society, culture, the access to this kind of treatment is very difficult at times because of how much it costs, and the ability to find a doctor who understands us and can actually do that surgery in an efficient way. So we use medicines in our culture and society to treat disorders and diseases. Now these medicines, including hormonal therapies, that are used to treat endometriosis, can actually also cause low sexual desire, lessened arousal, painful sexual activity, and a lack of vaginal lubrication, and also when we have anxiety and depression, the medicines that we get prescribed, like antidepressants and antianxiety medication, oral contraceptive pills, and lupron protocols, these too also can contribute to a lack of desire. So we don't talk about sex, we don't talk about how much of our experience with endometriosis can actually impact our sexual functioning. The other thing that, when I speak with the Endometriosis Foundation of America to high school students, we talk so much about the GI effect of endometriosis, in so many patients, and how it can come with stomach ache, diarrhea, constipation, nausea, fatigue. I mean, who wants to have sex when they're exhausted, nauseous and having diarrhea? Not me, and by your laughs, I think not you either. So we have to think about the way that all of these different pieces of this puzzle play together, and how to really impact your ability as a human to receive sexual satisfaction. And that's a big part of our lives. So now we talk about relationships and intimacy. Whether you're single or partnered, however you identify, whatever your sexual orientation is, when it comes to having endometriosis, I cannot stress enough how important it is to communicate your sexual needs and your feelings openly and quickly, and that's what I'm there for as a sex therapist. I've had plenty of patients come to me and say how do I talk to my client, I mean how do I talk to me, well I've had that too, how do I talk to my partner, right, about endometriosis? Or if I have a one night stand, do I need to tell the person that I have endometriosis? And the answer then becomes, if it is impacting your sexual functioning, or if there are certain positions that are incredibly painful for you, you have a right in your body to communicate that to someone, to make sure that you're maintaining your physical safety. And that's something really important, and sometimes sex therapy can enable someone to gain the confidence and also the vocabulary to use to communicate your needs. And then, like I said, endometriosis requires that communication. And 66, which I think is a whopping percentage, of women with endometriosis, fear, genuinely fear sexual activity. And then here's something that's really interesting to me. We think of endometriosis as a disease that affects women. Now, does it affect men? Not technically, because men don't have endometriosis, however, when a woman with endometriosis consistently says no, honey, I don't want it tonight, or uh uh that's not working, or uh uh, I'm in pain and that fear and that negative schema is ever present, right? It can lead to a partner consistently feeling rejected, unwanted, not desired, not valued, and that is presented in sex therapy, at least in my office, in a way that men are presenting with partners with endometriosis, with erectile dysfunction and performance anxiety. Because after these negative schemas that we experience as women with endometriosis, men too experience them in their own way. And so when a partner is consistently rejecting, and it's not because of you not wanting them, but because sex hurts you, right? It still leads to this questioning of am I good enough, what's wrong with me, why don't they want me? And then many times in these situations, I've seen patients come in and say my husband can no longer get an erection or I had, he doesn't last, or every time we go to have sex, he loses his erection and he gets really embarrassed and we haven't had sex in a year. And these are the things that we don't talk about. So we ought to talk about them because they're happening, and they deserve our attention. Does this all sound familiar, at least a little? So how does sex therapy play a role here? So, sex, I believe as a sex therapist, that we have the ability as individuals to define sex in a way that works for us. As an endometriosis patient myself, some types of sex don't work, my body hurts, and I'm not comfortable, but I'm entitled to sexual pleasure, and so are you. And that's when we redefine sex to make it something that doesn't hurt you but provides you with pleasure. And you can discuss your experience with a sex therapist in a safe space to talk about sex like it's chicken fingers and french fries, not like it's this sexual taboo that we don't talk about. And then couples therapy also can be really useful for when there's a need for sexual communication in the relationship specifically regarding these sexual dysfunctions that we've talked about today. And cognitive behavioral therapy for disconnecting the negative schema around pain and sexual pleasure, and then also working on erectile dysfunction, performance anxiety and other sexual dysfunctions that we talked about today. And it's important to understand that with endometriosis, and with anything else in life, your sex life changes throughout life due to many different things, including your partner, your age, childbirth, medical diagnoses, and medicine, so we want to take all of those pieces together and look at the intersectionality of all those topics and how it's impacting your ability to achieve sexual pleasure in your life. And then here are just my sex tips for the endo girl. Endo woman, however you want to define it. So you talk about your experience. Your experience is valuable. You are valuable and you are worthy of pleasure and of kindness, and talking about that can be incredibly helpful. Ask for help, if you feel alone, you are not alone. I can promise you that, but it's okay to feel alone. And in those cases, it's really important to ask for help so someone can be there to support you. Communicate with your partner. What feels good and what doesn't feel good. Gentle massages and foreplay can be a great alternative to intercourse, that can be really pleasurable for both partners. Avoid sex when you're experiencing endometriosis symptoms or a flareup, and often times when you're in your cycle, it can be more exacerbated, so to avoid sexual pleasure if you experience pain during your cycle, at that time. Also pelvic floor therapy can be really helpful when your vaginal muscles are incredibly tightened and tense. Interestingly enough, I learned, that when an orgasm occurs, if you're familiar, sometimes the body twitches and torques in weird ways when a climax occurs. The reason for that is the muscles in the vaginal walls tense up. So when your vaginal walls are so tense, there's no where for them to go, and often times patients complain of not really feeling an orgasm or the pleasure as much as they used to once feel it. And that's really frustrating.
So talk about that, and pelvic floor therapy can also be really helpful for that. Try different positions based on your individual physical needs. Use lubricant, and also run that by your doctor first based on what kind of sex you're having as well as what kind of partner you have and what kind of protection you use. And also redefine sex to make it something that you enjoy, because you deserve to enjoy it. And co-masturbation can be another great technique that people think I'm crazy for even suggesting, they're like, what? What does that mean? But to pleasure yourself can be done with a partner, and then you're at least in control of your body and it's a great way to get back into feeling pleasure even despite your endometriosis symptoms. So I know this was a lot, and sex can sometimes make us feel uncomfortable, so I want put that into the room and give space to that as well, and if you have questions, concerns, or would like to talk about this further, please feel free to reach out to me. This is my email, it got all finagled, but it's cabtherapy@gmail, you can call me, and you can also visit my website. Thank you so much for your time today, and let's beat this.
