Endometriosis 2023:
Global Patient Symposium
Together for Tomorrow
March 18-19, 2023 - Einhorn Auditorium, Lenox Hill Hospital, NYC
Thank you. Uh, that was a great panel. And yes, I agree with you. What a great segue into my, into the work that I do as a sex therapist. Um, so I'm gonna give you a little history and I hope to give you a couple of, uh, uh, language, uh, frameworks and lenses that you can use, uh, with yourself and with partners, uh, when it comes to your romantic and sexual lives. So, I, I wanna go back a bit because I was trained before I became a therapist. I was a modern dancer in New York City. I was a professional modern dancer, and I fell in love with family systems therapy. And why did I fall in love with it? Because I started reading and watching videos. And the whole concept of being a systemic therapist is understanding that there isn't one person with a pathology.
That actually, when you see a family and someone is symptomatic, those symptoms are affecting that whole system. That system is being, um, is becoming really the patient, if you will. And so we, as couples, a systemic couples therapist, I always, I always say to my couples, you know, your relationship is my patient. Your relationship is what we're working on here. And so fast forward, I, I go and get my social work degree. I go to Ackerman, which is an institute that used to be on the upper E East side, right near here. Um, because I wanted to be a systemic therapist, and neither in my social work training, nor at my postgraduate training did anyone talk about sex. And I was just floored because in the world where I was trained, people used to say, well, you wait until a client brings something up before you address it.
And if it's a problem, they'll bring it up. But we know as clinician, as as therapists, and the research actually shows in the medical world that if the doctor or the therapist does not bring the topic of sex up, the patient has now gotten a meta messages. This is not a safe place to talk about sex. And this goes directly into when you're getting care for endometriosis or any type of sexual pain. Your doctor is probably not asking you, how's your sex life? They're probably not saying, what are you doing to ameliorate the pain and still maintain some sort of sexual, you know, connection with your partner. So I wanted to give you just that background to kind of let you know where I'm coming from. The other part of being a systemic sex therapist is that I don't only see the couple, but I I'm also in touch with their pelvic floor physical therapist, which by the way, is a sex therapist best friend when working, you know, with people with sexual pain, I'm working with psychiatrists, I'm working with doctors, we're collaborating.
So it's not like we're each in a silo. So that's an important thing to remember as the client and feel you can advocate for that to happen. So when I started, so as I said, I had some cases where I didn't wanna assume that the sexual problems they were having were psychogenic in nature, meaning something related to a psychiatric issue. Um, and so I went and got trained and became certified as a sex therapist. Now, as soon as I became certified as a sex therapist, I started seeing a slew of women in my practice coming in with sexual pain. Women in their twenties, women in their thirties, women who had been suffering for many, many years. And so the kinds of, I'm gonna give you some names, which may, you may or may not know the kinds of pain that women tend to feel. It was mentioned here, um, when they're having penetrative sex, um, if they have endometriosis is called deep dys.
Deep dys, or we call it genital pelvic pain. And that is that deep tissue visceral pain that they were talking about in the panel before. There's also another type of pain called provoked vestibular, or pv, or it's also sometimes referred to as superficial dyspareunia. Now, some of these medical terms drive me crazy because if you have been the subject of this pain, it does not feel superficial at all. But they're trying to, um, differentiate between pain in the vestibule, which is the opening to your vagina and pain inside your vagina. That's deeper. So the other thing that it, you know, we see frequently is the fear of pain during vaginal penetration, right? That's anticipatory p fear that your body has developed over time. If you've experienced multiple, multiple occasions of pain with vaginal penetration. Now, uh, this term is no longer in the DSM five, um, it's called vaginismus. And it's really the spasming, um, automatically, automatically of the vaginal, you know, muscles and the whole body really getting sort of girded against the potential for pain. Um, the reason why it's no longer by the way, a standalone diagnosis is because after much years of research, we understood that the reason, if you have pain, your body is gonna go into vagus because your body is saying, no way do I wanna feel pain Again, it's a natural outcome of having pain.
All of these types of different pain, right? Leads, you know, I know, uh, you know, previous experts have talked about the, uh, sort of psychiatric and emotional, uh, components to endometriosis. These have a direct impact on sexual desire, sexual arousal, lubrication, um, and what was called, you know, discussed here, which is the hypertonic tone in the pelvic floor region. So, um, the thing I wanna talk to you about is that when I was seeing these women, right, they were coming in most of the time alone, even if they had partners. Even if they had partners. Now I'm a systemic sex therapist. So one of my first questions is, would your partner be willing to join you in this treatment? Right? Why do women come alone? Why? Because it's a medical model. If there is something wrong in your body, you're the one who ha you know, you feel responsible.
I have to go to the doctor, right? The doctor is treating this illness, this endo in me. Um, so they also want to come, you know, they also come in asking or telling me, I just wanna have a, a normal sex life. Now, people, by the way, women without endo also come in saying, I want a normal sex life. Why? Because a lot of them are not experiencing pleasure. They might be having discomfort or pain in other situations. Uh, they might not be having the orgasms that they want, uh, because of lack of knowledge of their own body, uh, feeling anxious about talking to their partner about what it is they need in order to have an orgasm. Cuz they may be doing it just fine on their own. So this idea of having a normal sex life, I sort of wanna put it aside because each person is unique.
What, what is pleasurable to one person is different for the other. The other reason why I think women were coming in alone is that they were saying, my body, my problem, they had already been feeling anxious and depressed and guilty for causing the problems in the sex life that they were having or not having as a case may be with their partner. So what I say to them is, you know, if you could bring your partner in, that would be amazing, right? Because we could use, you know, the help. And by the way, um, there isn't, but I should say to you, there isn't a lot of research on endometriosis couples. We need to change that, okay? Uh, but the research that we do have, um, really lets us know that partners are also affected, right? It's a system for years, if they've been having dis difficulty because of pain with their partner, they start to feel anxious, they start to feel guilty.
T right? This especially happens when women say, let's just push through it, shall we? Let's just have, you know, penetrative sex. I can deal with it. I can deal with it. And so what happens for a partner is there's a disconnect between their body mind, right? Their body's turned on, their bodies aroused. They wanna have sex with their partner, and their mind is going, I can see she's not enjoying this. I can see she's almost wincing. Am I some like really me messed up guy? A lot of times it is men, uh, to wanna have penetrative sex with my partner and cause her pain, even though she's telling me, do it, do it, do it. Right? So you see the impact on this partnership and this system, okay? Also, men tend to develop sometimes erection problems because of this disconnect, right? If you're feeling anxious, your whole body contracts, as we know, there's less blood flow, what do you need to have an erection?
You need blood flow. They also may have orgasm difficulties actually. So they may develop, uh, a premature ejaculation. Why? Because they wanna get it over quickly. They don't wanna cause the pain. So these are co you know, like I call domino effects of, you know, in a system between partners. So how do couples tend to deal with pain, endometrial pain for years? They either avoid intimacy completely for fear of sending the wrong message. And this is what I mean, not just, when I say intimacy, I'm not even talking about penetrated sex. Only if someone goes to touch someone or kiss someone, the other person may kind of pull back because they kind of know how it's gonna go, and it usually doesn't go very well. They can project feelings of rejection on one another, which really is sad to see, you know, a feeling like you really don't want me, I'm not desired anymore, which really has a huge impact on one's self-esteem.
They may end up in escalating arguments around, it could be around sex, or it could be about some minor issue, but really deep down it's about the fact that they haven't had time to be intimate and emotionally touching with each other. Um, so I wanna go back to this piece I said about painful, like pushing through penetrative sex. Uh, what does it do? Well, it causes more damage, first of all, to the tissue of the vestibule and to the in, you know, vaginal, the deep dys brunia and like my, these esteemed colleagues talked about, right? It's creating this biofeedback loop and mind body connection that sex equals pain if you keep doing it. So the first thing I say to couples is, would you be willing to put penetrative sex? Take it off the menu. Would you be willing to do that while the woman is getting help?
Hopefully with, you know, uh, either pain blockers and or one of these great modalities. And I wanna have them talk, um, and understand that the brain as we know, is has neuroplasticity, meaning we can teach it new pathways, we can create new pathways through behavior. We all know that now. And so what I say and what I encourage people to do is let's create a new neural pathway and a neural pathway. I, I I, I'm kind of visual. So I think of it like sort of a hiking trail, right? There's well worn hiking trail, you can see it when you're out walking. It's been walked on so many times. That's that biofeedback loop around your body, mind around pain and sex. And so what I ask you, are you willing to create a new walking pathway that doesn't involve pain? That any time you're doing something that involves sexuality, that's painful, you create what I call a safe place that you know is comforting, you know, it feels good, you know, it feels connected, you know, it feels loving and it doesn't have pain involved with it.
Yeah. So I'm gonna try to give you some helpful frameworks, um, in order to increase what I call sex esteem, like self-esteem, but sex. This is a fra phrase I coined and a model I coined in order for people to gain knowledge, to gain confidence, and to learn communication skills to whatever partner they're going to decide to be intimate with. So I wanna start with this idea of motivations for sex. So sex researchers, Cindy, me, Cindy Mein and David Bus a while ago researched about how many motivations college students had to consent to sex and discovered 237 unique motivations to have be sexual with a partner 2 37, right? And they divided them into approach motivations and avoidance motivations. So examples of approach, motivations. I was attracted to the person they like look kind of cute in those shorts. I wanted to feel good. I felt love towards my partner, and I wanted to express it.
I I was really tense and I wanted to have an orgasm. These are approach motivations, and they all are positive, right? They focus on something positive. Avoidance motivations are concern of a partner's disappointment to stop a partner from leaving a relationship, fear of not being loved back, worry around not appearing normal. So when women are pushing through painful sex, it's usually due to avoidance motivations. And by the way, this is for women with endo and without endo, I've seen it many times. So here's one of my take home messages. Stop pushing through painful, penetrative sex. Just take it off the menu. And you notice I keep using the term menu, right? Because as a sex therapist, we think about sex. You know, most the general public, our culture, when you use the word sex, people already think painful. They already think penetrative sex, whether you're straight, whether you're gay, queer, whatever.
Most people think about sex as some, some penetration is going along. Now, I don't think that way, and this is one of the educations I give clients, think about sex as this big umbrella. And underneath this big umbrella are all these sexual and erotic behaviors that you can do and, and consent to do that turn you on, that make you feel close to someone that are fun, that can offer you a release. And they don't necessarily, I mean, you know, penetrative sex is just one of them. So I'm gonna give you a little history lesson. Up until the year 2000 sexual researchers assumed that women had the same sexual response cycle as men, which began with intrinsic desire, what we call intrinsic horniness, or a desire that comes from fantasy life. And this, the response cycle goes something like this. It goes desire that brings you into sexual, um, contact either with yourself or someone else.
It leads to arousal. That's the physical part. The excitement leads orgasm. You can tell that men created this model just by just letting you know here, because we know that a lot of women don't have orgasms when it comes to sexual partner experiences and then a period called refraction, right? And men have a longer refractory period than women, which is why women are capable of having multiple orgasms. But why doesn't this model work for women? Or all the women who come into my practice with, with dys, they don't have desire. They don't have desire because every time they've had an experience, it's been painful. So they don't have any intrinsic desire, they don't have those approach motivations. And because their body mind exclusively remembers the pain they're avoiding. But they come in and they say, I want to want, I wanna have desire. And so along in year 2000 comes this rockstar sex researcher named Rosemary Basson.
She's out in Vancouver, who comes up with a new sexual response cycle. And it's almost like a, it's kind of an oval. And one of the main sort of gifts that she gave the world of sex research and to women is the term called responsive desire. That you don't have to enter a sexual experience with that desire in place that many women reported in all her research, that once they got started getting busy, the desire kicked in. So first came arousal actually, or stimulation, and then desire kicked in later. Or they felt more turned on when their partner approached them, when their partner expressed feelings of love when their partner said something flirty when their partner, you know, dressed a certain way. So responsive desire is that feeling of approach, motivation that I was talking about before. And it's based on context and it's based on a partner's approach.
And one of the terms I've created, now I know in the sort of com common nomenclature, the term trigger is usually used either for physical therapy, um, or also as a negative concept. But I've kind of turned it on its head by creating what I call, um, a menu of erotic triggers as a way, again, of getting people to think about that wider sexual umbrella. So what I say is you have seven erotic trigger departments. Five of them are senses, and two of the other two I divide up into psychological and emotional. Emotional are the triggers where, you know, you feel close to someone you feel loving towards, someone that makes you wanna feel loving and close and intimate with them. And the psychological one is about power exchange. Someone is more dominant, someone is more of a follower that's kind of one of your turn ons or you switch it up. Those are like the, the six that I I, the seven that I give clients. And I ask them to really think about what are your top three erotic triggers? And it's funny that sometimes partners really don't know what their other, their partner's erotic triggers are. I'm doing all this because I'm trying to help them create a new sexual script for one with one another that's positive. That's a the new developing the new neural pathway.
So what I wanna invite you all to think about and to take home is that you have to develop your own sex esteem on your own, first of all. And with your partner, if you are partnered, if you're dating, you have to learn how to talk about this stuff so that you can have a good experience, a positive experience. And um, I want you to also think about the fact that your sexual life, while you're getting treatment may or may not ha in, in include genital penetration, right? Vaginal penetration until you're pain free. And what I want you to start thinking about is to create a new practice. And I, I try, I invite clients to think about their sexual lives as a practice because it's not going, it's not necessarily goal oriented, shouldn't be, it's about connection. It's about pleasure. So here are some things that women can do or couples can do if you're partnered.
So, begin by using a mindful breathing to invite your psyche to become aware of your body senses without judgment, without judgment, which is really hard to do, right? We all know, like meditation's a really hard practice when you have been suffering for pain for so long, it's, it's very hard to give up some of the judgments. I always teach clients about, uh, the Buddhist, um, model of the two arrows. The two arrows goes like this. The first arrow is a fact. You know, like Buddhist don't say you're gonna be happy and blissful all your life. Now they're saying really crappy things can happen in two in your life that you have no control over. That's the first arrow. But the second arrow, so let's say the first arrow right, is your, your pain, it's your dys. The second arrow are all those stories that you tell yourself around that pain. It's the anxiety, it's the blame, it's the guilt that keeps you spinning. And we know from research that this part actually can cause you to feel experience more pain. These studies have been done. So starting out by a practice of mindful breathing that makes you more embodied. I'm an unbodied sex therapist. I really check in with my clients about what is going on in a session in their bodies to help them check in emotionally.
Then give yourself time to explore, excuse me, your pleasure zones. You know, I always say that the body is like a body scape, right? Almost like a landscape. There are so many pleasure zones in your body outside of the inside of your vagina that you probably have never explored and you probably have not explored it with a partner. These this can give you pleasure. It's part of creating this new neural pathway. Find a vibrator that has just the right pressure to arouse you externally. Excuse me, noticed I said externally. There's another word that we have in sex, in sex therapy that I want you to take home today. That's called outer course. Outer course. I said that. Yes. Why? Because we know that the reason why, there's what we call an orgasm gap <laugh> in America where women tend to orgasm maybe 67% of the time. Whereas men, I think they're in the 90 percentile in their last sexual experience is because there isn't enough time, attention and stimulation in outer course.
Yeah.
And then once you feel more confident in your own body and your own pleasure zones, you've really identified what's turning you on. Um, also what's turning you on erotically, right? Using fantasy, using, you know, uh, some erotic stories. Uh, there's some great apps out there now, uh, finding some great feminist porn that you happen to, like, you know, once you've learned all of that for yourself, then it's time to bridge it to a partner and it communicate and show verbally, non-verbally what it is that really turns you on what really feels pleasurable. And then keep that outer course practice going
And only focusing when it's not painful. If you have any sort of pain, you have to have an agreement ahead of time with your partner. We're gonna go and I, you know, we're gonna find a safe place, meaning like a choreographed position where I know I'm gonna feel great, I'm gonna feel close, and I'm not gonna feel pain. And, and that is how you slowly build and keep intimacy between the two of you so that it doesn't get, it's not a black and white situation. Either you're having sex or you're not. And I said to you, you know, there hasn't been that much research, uh, with endometrial clients or women or their partners, but a research study I came across from just 2020 last year surveyed 868 women from Switzerland, Germany, and Austria. And half the women had endometriosis and half the women were part of a control group.
And what they were looking at, what they found out was that although women with endometriosis were less likely than those in the co control group to reach orgasm during sexual intercourse, there was actually no significant difference in orgasm rates between masturbation or what we call solo sex. Um, and non-penetrating partnered activities between these two groups of women. So I really want to get this message across that you are your own best advocate. That's why you're here today. And you deserve to have pleasure and intimacy in your life, even with endometriosis while you're getting treatment for endometriosis, right? We want you to feel connected to your own body. We don't want you to feel like you're, you know, you're a stranger to your own body. And so I'm encouraging you to figure out ways to create a new neural pathway, develop your own sex esteem, figure out what your positive erotic triggers are, motivations to have some sort of sexual life with someone and don't feel guilty about it.
Quiet down that second arrow so that you can enjoy your life so that you can be close to your partner. And by the way, your partner also needs help if this has been going on for a long time. And so that's where couples work really, really is important. Um, and you know, I think if you are partnered, you know, your partner has to be, you know, has had to be quite flexible to the cycles of pain, the cycles of fatigue, the cycles of mind fog. But here's something that they can actually do for themselves and with you for your relationship. Remember the relationship is the system, which I think is really helpful for a partner because they feel so helpless. A lot of them feel very helpless. So I hope these kind of take home, um, messages and encouragement and invitations are helpful to you. Um, if you have any questions, I'd love to hear them. So thank you.
Do I have the micro? Yeah. Thank you. This was a good talk, right? What do you think? She didn't have any visuals though, right? <laugh>? You could have slides.
Yeah, I could have. Yeah. But you know, I really wanted to talk to people.
Is my wife here? Is my wife here? No. Okay. So let's go anyways, um, really nice talk because um, I like to touch the component of your, uh, talk. It is, you're the center for love and sex. My question is about the love part. Mm-hmm. <affirmative>, you know, many times, uh, this is a serious thing. We do, we do have very specific questions in my practice about sex, sex with arousal, pain with arousal. Mm-hmm. <affirmative> pain with orgasm. Mm-hmm. <affirmative> pain during, and they volunteer to tell what position it is. It is helpful for us and then pain after. But many times the answer is we are not even doing it. Dr. Se, are you kidding? That chapter is closed. Right? And you know, many times this is, this is, she's alone when she says that it sometimes, but it's so hard for men, uh, you know, to it. I can't ask the next question cuz I know what it means. How do you live, uh, deal with, am I, first of all, am I missing any questions when I ask this? Because these are my anatomical questions because I'm, because patients themself bring and write in their testimony before in we have an intake form mm-hmm. <affirmative> patient do write that they have, for example, pain with orgasm and some do very explicitly. And then we, we obviously carry, we could carry the question, but generally am are we missing any other question in this perspective?
Yeah, I think I, I'd be interested to know whether you ask them if, if if the pain, um, with orgasm is, uh, during penetration or do they have pain when they are self pleasuring?
Well, ob obviously our questioning has to do I specifically ask deep contact coital pain versus Right. Non coital, you know, so,
But that's a great question to ask women. Yeah. Are you having pain with an orgasm if you're self pleasuring? Because what you're trying to offer them is an opportunity to have pleasure without pain. And if they can actually have an orgasm with their manual or vibrator, um, or oral, then wow, what a great thing to know about.
So the bottom line is obviously in our questioning, we wanna know if there is a rectovaginal disease. So it does give us, uh, some sort of an impression where the disease could be, especially they specify when or how that kind of stuff. But more importantly, uh, the relationship that's going to south you feel terrible for, for the couple when they break up and everything. There are reasons, you know, there are many times some men don't understand. So endometriosis, a disease man has to know otherwise the relationships are better than, and they don't, they don't go well. And I see so many divorces cuz of this from my own patients or separation from their partners and stuff. Mm-hmm. <affirmative> because they can't have a normal sex life and just love may not be enough sometimes.
Well, I'm, I would, I would, you know, the real thrust, no pun intended, actually, uh, the, the thrust of this talk is that I think we have to redefine what normal sex is because normal sex has, can encompass all sorts of things that don't involve vaginal penetration while a woman is getting treated for the pain that in the depar and in the meantime, having your partner on board with that, uh, while it might prove to be challenging for them, given, you know, especially if they're men and we live in a culture in which all our media tells us that, you know, penetrative sex equals sex. Um, they have to be, that's really my argument is that they have to be part of this treatment all the way through, um, and be on board with it. So I think there are lots of ways to express love. And by the way, if you are a queer woman with endometriosis, I bet you, um, their female partner, uh, or trans partner, whoever, um, might be a lot more understanding because we know that, you know, lesbian women tend to have better rate of orgasms than straight women who, who to figured <laugh>.
Thank you. Yeah.
Other questions?
I wanna ask a quick question. What does it, what does a typical couple look like coming to you? I mean, I know that there's not maybe a typical couple, but what does it look like for a first visit?
Unfortunately, just like in the medical community where by the time you've gotten to a doctor, um, you've been suffering for a long time. So I generally see couples who have been together for, I don't know, three to eight to 10 years. So they've already had this as part of their sex life or lack of sex life. So they're coming in, um, really concerned about the fact that, you know, infrequent, um, sexual connection of any kind. Um, the other type of couple we come that come in is when they wanna get pregnant. Right? Just like, you know, where, how a lot of women find out they have endo right? Is when they're trying to, uh, become pregnant. Um, and they're not being able to have, um, vaginal penetrative sex. So they're trying to fix that part of their life because they wanna have, you know, get pregnant. Yeah.
What does that first, um, visit look like with a couple, maybe it's been, you know, eight to 10 years? How do you approach them? I think there's some intimidation when I talk to patients.
Yeah. It's an excellent question. I think, you know, when people say I'm a, you know, I tell people I'm a sex therapist, they're like, you're a what? Like what do you, what does that mean? And we have a model that includes education because many people who are very, um, sort of traditionally educated are not as educated around their sex, you know, their, their body, first of all. And also the way sex works. And so I will give them a lot of the information I just gave you all about, can you consider going into a different model or menu of sexuality to bring back pleasure in your relationship so that you do have intimacy. You do have a way to express your love. You do get a, a, you know, a sexual release like th there's hope here. Um, but you're going to have to change your framework around what your sexual life will be for now. Right. Eventually, hopefully, you know, if the, when the pain is treated, you can return and try out, you know, vaginal penetration. Did I answer your question? You did. Thank you. Yeah.
So, okay. So sorry for asking so many questions today, but, um, I do have one quick question. Um, in today's society, everyone is stressed and especially individuals with endo who are in pain. And you see this ever like increasing use of SSRIs and I know that one of the main side effects with these, um, treatments is decreased arousal and, you know, trouble having orgasm or whatever it may be. Mm-hmm. <affirmative>, um, have you, how do you deal with that in practice and do you usually promote more of that response cycle that you men, I think you mentioned something from the woman in Vancouver, but um, do you see that as like, effective? Um, or
Well, so it's all, it's all, you know, I'm a bio psychosexual spiritual therapist, and so yes, we all know that, um, the SSRI's, uh, main sexual side effect is, uh, lengthening the time to orgasm or having difficulty orgasming at all. Um, and so what I do, part of that system I was talking to you about was I develop relationships with psychiatrists who are willing, who are willing, right? Not everyone is willing to, um, adjust medication for depression anxiety to a cocktail that lowers the S S R I and there are other drugs that can be used for the same effect. Um, so yeah. You know, that that's something that we do a lot of. Yeah,
Right here.
Hi. Hi. Um, yeah, thank you for being here. I find sexual dysfunction in endometriosis to be the thing that is least talked about. And, uh, probably the, one of the more painful aspects in my personal journey. Um, I have had the chance in like my adulthood with a recent flare up in a committed partnership to explore a lot of this. But the reality is like my sexual dysfunction started way before I was even sexual. And by the time that I was approaching my sexuality, like in my teenage years, I had so much pain in that area, visceral pain from, you know, age of eight, that it, and there was no tools. There were no tools. Um, and I do think that when you feel grounded and you have this, uh, diagnosis and you have done the research, like, yes, there is this work to be done, but a lot of the sexual dysfunction was not even knowing how to start relationships, not knowing how to talk about pain without unloading a very complicated diagnosis.
And largely at a time where we didn't even have all this. So it's, there was not even, you know, now I can say look up endometriosis, but that wasn't always there. So how do we approach that? How do we approach that sexual barrier when we're approaching relationships when we don't even have like the words to fully describe what's going on? Because you're saying it's like you need to have this committed partner who's there to do it with you. Um, and there's also still a lot that I don't know. I mean, for, for me personally, like I, I didn't have any sensation in my clitoris until like a hip surgery in my mid twenties that opened something up that came from an endo doctor. But like, I don't know if that's a unique experience. I don't know if that is more common. Um, I think I had a question in there, but <laugh>
No, I think you're bringing up a really important point. I'll, and I'll put it through kind of a developmental framework because I think what you're saying is like, I never had an opportunity to kind of go through the developmental stages that other people go through when discovering their own sexuality, when they're discovering tingles in their body. And what that was like. I never had the opportunity maybe, maybe, um, to, to make out with someone because that was not even on my mind. I was just not feeling well a lot of the time. Um, so I think that kind of menu of creating zones of pleasure is part of your work to do in order to be able to kind of bring yourself up as a sexual being and then being able to sort of show your partner like, oh, I found this thing that feels really good, or I thought about this fantasy that feels really hot, right? Like, you're giving yourself the time to catch up and give yourself an education about yourself. Um, I hope that helps. Yeah. Yeah. Okay.
I just want to, very nice question, just, uh, comment as a surgeon hearing these problems from the endometriosis perspective, um, there is a, this is also my very strong experience over the years. One of the things that do well with deep endometriosis surgery, there is a study from 2014, I had this study I just recently reviewed for another thi reason, uh, double arm prospective on deep images, long term, five year, one of the, when the surgery is done well, when rectal vaginal septum, that area is cleaned up for endo. The single most important component of the, you know, positive outcome of the surgery is disonia very important. So if there is no dyskinesia painful bowel movement, which is rectal disease, if it's unique to just, uh, optical vagina, the top posterior phix, if there is disease there, if it's cleaned up, the patients do exceptional. Well, and this has been ex my experience also exclusively, this is very important because that area of the body is the least accessible and very difficult to treat technically and skill-wise. But when you clean it, when you restore that anatomy, when that fibrotic inflamm tissue is removed, they do exceptionally mm-hmm. <affirmative>. This is my, my, uh, experience then.
So I think the question too is a two part that you had, were you mentioning about if you don't have a partner and you're dating, and I know I have gone on dates and I've tried to explain endometriosis and I have had some pretty ridiculous responses, like, oh my God, can I get it? I'm like, calm down, we're all safe <laugh>. Um, so that's, that's a great question. Um, how do you approach it as someone who's single? And you know, I, I've heard all these different dating rules and it's crazy. I'm an old millennial, it's a lot for me. Um, but how do you say to someone, I have this, you know, I have an illness that, that can make sex really kind of uncomfortable,
Right? So if you're dating, you're looking for a partner with whom you can create this neural path, you know, new, new pathway. So they have to be understanding, they have to be educated, right? Like any sort of illness, like what if you had diabetes? What if you had, you know, I don't know, like some other injuries that causes, you know, pain, right? You have to sort of be honest with yourself to say to someone at some point when it's starting to get more frisky, um, you know, we, we need to have a talk just like I say to people, like, you need to have a talk outside the bedroom about STIs before you get busy. Okay. Like, that's part of good sexual health. So is this, and being able to say, you know, I have an an illness, it, it, this is kind of how it's impacted me.
I'm really into you. I would like to be more sexually connected with you. Um, and here are some of kind of my limits and being honest. And if a person, it's just like if you say, you know, to someone, by the way, I have herpes, like I wanted you to know that before we get sexual with each other, you know, if you don't know much about herpes, like I can explain it to you, I can give you some links to understand it and then, you know, let me know if you wanna proceed. Well, the same is true. Like, you know, this is kind of an opt-in experience, you know,
You also just tell the, the man, the partner, anyone who you're with, this is what I like, and if they're not comfortable with it, then they can go away. And if you know your ways, like, I mean, being a woman is so empowering and it's like, use that to your advantage. I mean, if you, if you know what you need to do, you don't necessarily need to bring up, oh, I have disease. I was diagnosed when I was blah, blah, blah, blah, blah. Especially for younger, um, individuals who are not necessarily looking for dating per marriage,
Right?
Or, and are, you know, experimenting. So having those deep conversations are is a lot more difficult. Um, so maybe just being more,
Well, I think it depends what your motivation is. Thank you for bringing that up. If you want something that's a little bit more casual, it's, it's really talking boundaries, right? Like a boundary is like, I'm not gonna have sex without a condom. Like, or I don't do oral sex or receive oral sex with someone until I know that we are exclusive with one. I mean, these are all boundaries and they're part of your sex esteem. So if you can start feeling more confident about saying any of this, you can say, you know, and, and by the way, these are my boundaries around penetration right now. You know? Sure.
Can you hear me
Again? Yeah.
Um, question. So with Endo, you know, we're dealing with a lot of different concerns, including pain management. There's also concerns around infertility. And you started to touch on this, but as you know, said no penetration while you're dealing with the pain. Well that can take like a really long time to figure out how to manage. And you also feel like there's a ticking clock that's even faster. So what do you tell or what do you advise patients who like want to have a kid but are still dealing with a lot of pain in that situation?
There was one thing you said at the end that I didn't hear. Can you just repeat it? Oh, can you say to couples,
Yeah. What do you say to couples? Like, you advised no penetrative sex until you've dealt with the pain, but that can take a long time. And then there's also time of a ticking clock of Yes. Fertility concerns. So how do you balance that in your advice, um, to patients who might be trying to have a kid?
Right. So I also work in my, you know, when I'm talking about my system of people I work with, I also work with gynecologists or fertility doctors who are extremely sensitive right? To endo. And so if they're coming to me and they're saying, but we wanna get pregnant like within the next six months, then I'll say, can we work on your sex life while I help you sort of find other ways to get pregnant, which might include iui, right? Um, so, or I ivf it depends where they are, right? So, um, what I'm trying to do is like, it's a hard case. It's complicated. I've had those cases, but I'm trying to help them with their desire to have children, um, while maintaining a place for sexuality that's pain free. Thank you. Yeah, it's a good question.
It's okay. Yeah, we can do one more. What was it?
Hey. Okay. So, uh, sexual dysfunction and all this hard stuff because of endo is one thing. Um, unfortunately I think a lot of, uh, women have also experienced a lot of sexual trauma because of sexual abuse. And personally I've have both in my history. Um, do you recommend working on those aspects separately? Together? Cuz I know the sexual tr like abuse thing, I haven't even been begun to unravel. I'm almost 40, you know what I mean? Like, that's like such a deep therapeutic, um, focus that you have to like, make time for in your life. I mean, at least I'm speaking personally, so, but also, you know, the sexual discomfort with all the endo stuff, like Yeah. Separate together both like how,
It's a very good question and we work with a lot of people with sexual trauma. Um, one of the things I would say, and there is some overlap in terms of symptoms, but one of the sort of hallmark symptoms that women are coming in with, if they've had a background and men, if they've had sexual trauma is disassociation, right? Excuse me, which is, you know, leaving your body psychically during a physical sexual encounter. And so my first thing that I wanna actually address is helping them to stay in their bodies so their body and mind remember, are connected. There's no cutoff, which means going very slowly to experiences that feel safe. And as soon as an alarm goes off, which is like now the negative or, you know, trigger not the erotic triggers I was talking about before. They have, they learn skills to ground themselves to calm down while being connected with their partner, right?
And in some ways, right, there's a lot of overlap with endo, you're still going at a pace and if you feel discomfort or pain, you have to pull back and go to a, a place that is more comfortable, more connected, uh, as a way of like learning kind of what your limits are at that moment. Um, so I think it's a both and it's slow work. Yes, you're right. Um, but it's, it's, you know, work we've done with people, you know, but the first, the first order of business is getting yourself, you know, body and mind to stay together to be embodied when you're sexual. Yeah. Thank you for that question. Thank you. Oh, and thank you. Sorry. Thank.
