Let’s Talk About Sex & Endometriosis…Seriously!
Top International Faculty Convenes to Talk about Sex…and Endometriosis…Seriously!
At Endofound's Second Annual Scientific Symposium
“We are here today to exchange options and ideas.”
- Symposium Chair, Tamer Seckin, MD
In support of this event, Endofound acknowledges the generous gift made by the Leon Lowenstein Foundation, Inc. in behalf of Kim Bendheim, Co-Chairman and Director of the Foundation, along with the genorosity of our event partners, Ethicon Endosurgery, Simbionix, Karl Storz Endoscopy, Lumenis Lasers, Abbott Medical, endometriosis.org and the Endometriosis Research Center.
Speaker 1: Hi. This goes out to Dr. Gomel and also to the rest of the board. I was wondering if things particularly like physical therapy can address issues such as hyper- and hypotonis of the pelvic floor as well as attending to the neural feedback loop. What kinds of differences are you seeing with complex pelvic pain patients with surgery alone versus patients who have surgery and incorporated a course of PT afterwards?
Dr. Gomel: Thank you.
I'm not aware of any studies that have combined PT and surgery for endometriosis. I can speak to studies where the dyspareunia was due to provoked vestibulodynia and in those studies, adding physical therapy was very helpful because ... For two reasons.
One was the retraining of the pelvic floor, but another one is more psychological. It's that aversion that had developed about their genital area, their pelvic floor area, is in part addressed by having it manipulated and learning how to manipulate it themselves.
Speaker 3: Another Q and A from the floor? Ariel?
Ariel D.: Hello, everyone. My name is Ariel Dans. I'm coming from this twofold as both a woman with endometriosis but also as a graduate student doing research in relationships and endometriosis. You mentioned that sex is sometimes being done just for the pleasure of your partner, so you pretty much don't
want to do it, but you're still doing it. But do you know of any research or do you see it in your patients of intimate partner violence, is it affecting, and marital rape as it occurs, women not wanting to have sex but are being forced to by their partner?
Dr. Gomel: I don't, but I think that's a function of who seeks therapy. I see couples and what I'm thinking is that the partners that engage in that kind of domestic violence are not likely to join their wives in therapy. That requires a more sensitive soul.
I would be very surprised if that wasn't in fact a problem, but you tend not to see it in therapy because therapy gets you a very biased sample. It gets you intact couples who are for the most part trying really hard to work this out. But perhaps somebody else knows about the domestic violence aspect of this.
Speaker 3: Any feedback? Dr. Godjam?
Dr. Godjam: Hi. I'm Dr. Godjam, assistant professor of epidemiology at the Yale School of Public Health, and I focus on gender-based violence and reproductive health. That very question that Ariel just presented is something that I as a researcher have been grappling with because we see a lot of data on intimate partner violence as a risk factor for pelvic pain, but I think one thing that research has not done is looking at pelvic pain, issues with endometriosis, and how that affects vulnerability to experiencing intimate partner violence. It's something that really needs to be looked at because certainly anecdotally I see it, but there's no data. I'm collecting some of that data right now in other settings.
Speaker 3: Next year you'll be up here with that data, yes? Sarah?
Marta: This question is for Marta. You conditioned yourself to not want to have sex, on then on top of it, you're taking a GnRH agonist, for example, Lupron, and that diminishes your desire altogether. Where do you start? What do you do to try to get your life back, your relationships back?
Dr. Gomel: Complicated. There are a number of things you can do, both on the relational level and in terms of how you have sex. If you're in a situation ... It depends how painful intercourse is. If you're in a situation where it is not tolerable or is extremely unpleasant, I would say don't do it while it feels that way. As I said before, enhancing arousal as much as you can. The more instances you have of negative pairings of sex, you end up just being averse to it. Why wouldn't you be? It's not fun.
What you have to do is you have to be flexible and creative in terms of "how can I still engage in this activity in a way that continues to give me pleasure," and to have very open communication with your partner, and very open about what works for you and what doesn't. Get rid of notions about what is normal sex and what is normal frequency. I would say both on the relational front and in terms of being ... Communication on the relational front and in terms of your sexual activity, being flexible and not having a strict script about what should be happening if that is not pleasurable to you.
Speaker 3: Thanks.
Dr. Gomel: But it's hard.
Speaker 3: Yes? Right there.
Speaker 7: This is a question and also a comment. Padma was talking about the different avenues that we can use as lay people and professionals to get the word out and educate and intervene. I'm thinking about ... Padma also mentioned the conception that pain during a woman's cycle is normal. I'm thinking about young girls who are not yet visiting gynecologists and speaking to primary care physicians and pediatricians, because I've noticed a large trend to use oral contraceptives with young teenage girls to help with pain. I'm wondering, the question part is I'm wondering whether the use of early contraceptives at an early age for that reason can prolong the, and mask, some of the symptoms, and then when the girl becomes sexually active, she comes to find that she's been suffering from this disease and that may not have been the best intervention at an early age. If the panelists can comment on that.
Speaker 3: Would anybody like to speak to that? I hope. Give her her own microphone.
Dr. Gomel: I'll just say a few words about that. I won't be able to speak as much about the contraceptive, but early contraceptive use has actually linked to another cause of dyspareunia, which is vestibulodynia in young women. I thought I might add something. We just finished a study looking at treatment barriers in young women with dyspareunia, so these are very young women who have had persistent pain with intercourse for one to two years, the beginning of their sexual lives, and who have not sought treatment. We asked them why.
Just as you brought up how some girls, and Padma brought up how some young girls think that having pain with their periods is normal, well, a lot of young girls think that having pain with sex is normal. We have these expectations that first coitus must be, might be painful, so young women tend not to react immediately if that's what happens. It takes them a long time to seek help for dyspareunia, first because they think that maybe it's not that abnormal, then there's the embarrassment. There's still this kind of funny ... Women, we've had a tendency to think that there's certain pains we just have to endure, as if it's part of being women.
There's a lot of education we have to give young women about both that intercourse pain is not normal, and neither is the kind of pain that women with endometriosis have during their periods.
Speaker 3: Thanks. Thank you. Yes?
Speaker 8: To answer your question to some extent, the American College of Obstetrics and Gynecology in the last five years have put up guidelines on how to manage different sets of patients. Birth control pills, ideally, in a continuous fashion without having the patients' having her period, which is another topic, hard to convince a patient to do. It's one of the tools that we have available. Dealing with teenage patients with endometriosis is one of the most difficult topics that we have in the clinics, and actually convincing the parents to provide the birth control pills to the patient is the other aspect.
It is one, too, we have experts here in the field who can testify to effect that if you [inaudible 00:10:18], if you transform that tissue and you start menses also within that progesterone environment, that will help that patient. But foremost, you need to do a diagnosis. That teenage [inaudible 00:10:31] has to have a labroscopy, regardless of her age, to have an ongoing therapy that has a basis which makes sense. You don't change the way you approach the disease because of the age of the patient.
Speaker 3: Excellent, thank you. Thank you.
Speaker 9: One ...
Speaker 3: Casey.
Speaker 9: Thank you.
Speaker 10: Right here, sorry.
Speaker 9: Thank you. Just one impression, if I may. A patient of mine gifted me with a book she wrote about the philosophers' breakfast club, and it goes back to the 19th century where leaders in medicine, leaders of science, were forming societies to compare their insights, compare their research. These pioneers would quote Francis Bacon and his invention of scientific thinking. One quote of Bacon's writing is simply that he felt that the point of science is the betterment of humanity. I must say that in listening to the wonderful research beginning in the first section regarding the molecular and genetic foundations of the disease and listening to the brilliant multidisciplinary approaches that we've heard just recently, I cannot think of a better example of the use of science for the betterment of humanity. My compliments.
Speaker 3: Thank you so much. I think we have one more, maybe.
Speaker 11: Hi. Oops, excuse me. I have been suffering from endometriosis since I was 18 years old. I come from a long family of endometriosis sufferers, my mom and her four sisters. They all had to have hysterectomies before the age of 35. I have a 12 year old daughter who just started her menstruation. Do I wait? I don't know when to take her to the doctor, because the symptoms that I see her having now are the symptoms that I had, that I still have. I'm still battling it, I'm still going. I've had over eight surgeries. I'm still dealing with it.
Do I just take her and have an invasive surgery, a labroscopy, so that they can diagnose her so we can start this at a younger age to treat it so she doesn't have to go through what I have been enduring for the last 17 years and now I have infertility issues? I'm not sure.
Speaker 3: I think Dr. Lu would like to speak to that.
Dr. Lu: I think, from the clinical point of view, endometriosis, they are not all the same. They don't behave all the same way. We just learned endometriosis is a complex disease. There is no simple answer.
Now, for the young girl like a 12, 13 year old, have an [inaudible 00:13:51] dyspareunia ... Hopefully it is not dyspareunia yet. Not of discomfort, pelvic pain. Yes, the first time is really birth control pills, because some of the endometriosis will respond to birth control pill very well. In that case, yes, we continue to put them on birth control pill.
But if they are on birth control pill and they still have pain, then yes, you need to investigate. You probably, if she has endometriosis, you're probably dealing with a different, more nasty type of endometriosis, and that needs to be treated.
Speaker 3: Thank you, Dr. Lu. And with that, I will go ahead and close this session. I'd like to thank our wonderful chairs, Dr. Passick, Dr. Romo, thank you so much. Our fantastic panelists, Dr. Gomel, [Lonohono Soy 00:14:46], Marta Mina. Of course our cofounder, Padma Lakshmi.
Dr. Seckin: I just want to make a comment.
Speaker 3: Certainly, Dr. Sechkin.
Dr. Seckin: I think this is a very ... This last question is a crucial question. We're challenged with it. I just want to tell you, the questions we're getting is what is the value of excision on preventing the disease if it's done early. Does it halt the disease? In some cases, we know that from endometriomal angle, if you do good surgery, many times these endometriomas do not really come back. Disease does not spill.
From clinical's perspective, when I see these patients back, they'll have extensive excision, complete cleaning up of the cul-de-sac, clinically. When they put that endovaginal probe in, the lady who used to jump, or now they can tolerate and you can get them into talking on other subject during that exam, that's crucial. I'm not sure how they are really doing sex-wise, but most of the time you feel their cul-de-sac extremely free. Its' not about excisional, simple, one sample from the pelvis. The whole disease has to be to the point of visibility by labroscopy, it has to be removed. Otherwise, I think the incomplete surgery becomes the main crutch of the unsuccessful outcomes and all these troubles that many women faces when they have surgery.
That's all I have to say on this topic.
Speaker 3: Thank you, Dr. Seckin.
Speaker 14: Can I also make just one quick comment? I think we all in this room agree that endometriosis is a histological diagnosis, because unfortunately, there are a lot of physicians out there that just see lesions in the pelvis and they don't cut them out. They just coagulate them. There's a lot of confusion there, so there's one thing that we need to kind of set straight. Thank you.
Speaker 3: Thank you very, very much. If you would like to join us, we'd like to serve lunch in our lobby.