Interstitial Cystitis Network - Meet the IC Expert Guest Lecture Transcript
Date: June 10, 2002
Topic: Sexuality and IC
Speaker: Dr. Stanley Zaslau, Co-Director of the Center for Sexual Voiding Dysfunction, West Virginia University School of Medicine.

(Once a year, we invite a physician to appear in the ICN Guest Lecture Series to discuss sexuality and IC. One of the most popular chat topics on the ICN and in support groups around the world, the impact of IC on relationships and sexuality can be profound. Young and old, single or married, an IC patient can't help but be concerned. Yet, couples throughout the world survive and thrive despite the fact that one partner has IC. For those patients who do have discomfort (pain, irritation, muscle spasms) with sex, we hope that this transcript will confirm your feelings, provide useful sexual self-help strategies and, above all, give you a resource that you can share with your partner.)

(Jill O.) Tonight we welcome Dr. Stanley Zaslau, Asst. Professor in Urology at West Virginia University School of Medicine. Dr. Zaslau also serves as the Co-Director of the Center for Sexual and Voiding Dysfunction at WVU and this is what brings him to the ICN this evening. Our topic tonight is sexuality and IC. Welcome Dr. Zaslau!

(Dr. Zaslau) Thank you for your very kind invitation to speak in this forum. Sexual dysfunction in IC patients is fascinating to me and it is our goal to make patients more aware of the association between sexual dysfunction and IC, in the hopes that our patients will discuss this with their physicians and partners.

(Jill O.) How did you first get interested in IC?

(Dr. Zaslau) My interest in IC began when I was a urology resident. It was very frustrating to take care of patients who have suffered for so many years with pelvic pain and voiding difficulties. The fact that they had been seen by so many doctors and that their suffering was not alleviated, concerned me. I studied this further during my post-graduate training in Brooklyn and developed a center for IC that was very welcomed by the community.

(Dr. Zaslau) I was drawn to WVU for the same reason, to develop a Center for Voiding and Sexual Dysfunctions and have a primary focus on patient care, teaching and research in these areas.

(Jill O.) Can you share a little about your current survey on the ICN and what you hope to accomplish with that?

(Dr. Zaslau) Thank you, first, for your help in this. Jill has supported my effort to learn more about the relationship between female sexual dysfunction and IC. The questionnaire placed on the website is an internationally accepted questionnaire that assesses sexual dysfunction in the areas/domains of sexual function, including: desire, arousal, lubrication, orgasm, satisfaction and pain. We would like to learn which of these is least and most effected in the patient with IC.

(Dr. Zaslau) We have received more than 250 surveys so far and have some preliminary results at this time. The average age of the patients responding is 40. They have the highest scores in the area of sexual satisfaction in that they have notable closeness with their partner that seems to be the most important domain for them. Their second highest domain is also regarding sexual satisfaction, that is satisfaction with their current relationship. Their lowest scores are in the domain of pain, specifically in three areas. The lowest scores are frequency of pain FOLLOWING vaginal penetration. Their second lowest score is in the area of pain DURING vaginal penetration. Their third lowest score is in the pain FOLLOWING vaginal penetration.

(Dr. Zaslau) Preliminary conclusion from this review is that although pain is a very common experience of sexuality in IC patients, patients seem to be very satisfied with the closeness they have with their current partner. Also, when you compare our data to normal controls, all six areas of sexual function are statistically worse in IC patients. I'm sure that patients would like to see their sexuality improved to normal.

(Dr. Zaslau) We will have a survey for men shortly too. The survey for men has only five questions.

-------------------- Begin Q & A --------------------

(Jill O.) This question is from Jane. She asks: "Would more lubrication help to prevent the wall between the vagina and the bladder irritated??? Do you think that that is part of the problem??"

(Dr. Zaslau) The problem with pain relates to spasm of the pelvic floor muscles and that's a significant component right there. Lubrication will help that situation but it won't help the underlying spasm. Medications such as amitryptiline have been showed to improve pelvic floor neuropathic pain. Lubrication, of course, is very important to reduce friction. But, ultimately, if you're having spasms, we have to focus on reducing that spasm. This may involve medications such as amitryptiline, ditropan XL, Levsin or muscle relaxants such as baclofen.

(Dr. Zaslau) The first thing that you should do if you start feeling that you're going into spasm during sex is to RELAX. It's easy to say now, but at the heat of the moment it may be harder to do. Relaxation (such as gentle deep breathing) may improve the spasm sensation.

(Jill O.) Tura says that she has pain, like razor blades, during penetration. Any suggestions or comments??

(Dr. Zaslau) It's important to know where the pain is. Is it deep? or labial pain? Is it clitoral pain? Clitoral pain is very uncommon. IC patients are more likely to have vulvar pain (vulvar vestibulitis) due to an inflammation of the vestibular nerves. This can also cause some contraction and spasm of the musculature. We've had some anecdotal response of using topical nitroglycerine that can help. There is also some success with medicine that reduces nerve based pain, such as amitryptiline or neurontin.

(Dr. Zaslau) If the pain is deeper, such as middle of the vaginal barrel, this may be due to muscle spasm. The discussion earlier could be pertinent. The deepest pain may relate to the cervix and penile pressure on the bladder body and base.

(Jill O.) Have you ever had a patient use a muscle relaxant prior to sex to help stem off spasms?

(Dr. Zaslau) Yes, patients have had very good responses to antispasmodic agents that we discussed earlier, particularly baclofen.

(Jill O.) Ann has a great question. She says that her husband gets upset if it takes too long for her to orgasm. Any comments?

(Dr. Zaslau) The problem is that because he is upset, she is upset and it puts more pressure on her to perform. Remember that if a muscle is in spasm, it's going to be very hard to relax enough to actually reach orgasm. The emotional pressure will only make this problem worse and make her more tense.

(Dr. Zaslau) To help heighten her sexual response, she may have success with clitoral stimulation by herself or her husband which can help her reach orgasm. The clitoris is the least likely to be effected by IC.

(Jill O.) This brings up an important point, how to handle relationships and partners who don't quite understand the impact of IC.

(Dr. Zaslau) Let me just say publicly and for the record that sex with IC is really painful for some patients. If you don't believe it, then you are doing your partner is disservice. When one partner is hurt or ill, it's important to focus on gentle sex and focus away from intercourse and onto activities that also bring comfort, such as hugging, caressing, kissing, etc.

(Dr. Zaslau) Remember, you're all not 17 years old now. Sex doesn't mean what it used to mean when you were a teenager. As we get older, our needs change and our sexual desires change. Often the most successful couples are those who are willing to step back a moment and just experiment. You don't have to have wild athletic sex at the age of 40 and, in fact, you don't have to have intercourse at all. Some people have wonderful intimate bonds just by being together and touching one another.

(Jill O.) What about the guy who believes that sex is only about intercourse?

(Dr. Zaslau) This is very sad because this gentleman is missing the true meaning of intimacy. Intimacy is a total love for one another, not just a love for intercourse. My advice to this couple is to focus away from intercourse and more on "outercourse" in hopes of achieving true intimacy and to gradually work intercourse back into the relationship as tolerated by the partner with IC.

(Dr. Zaslau) Here are some tips to keep in mind that may make intercourse more comfortable: Lubrication is very important! Also, let the IC patient control the type of intercourse...positions.. and the like. The reason for this is that pelvic pain often varies by the sexual position. In my experience, my patients tell me that the female on top position is associated with the least amount of pain because the female is in total control and the force of penetration.

(Jill O.) One of the things that I've noticed with IC patients is that they often lose trust in their own bodies. They are so afraid of the pain that it's easier to walk away from a relationship then try to figure out, what I call, their comfort limits. Please bear with me for being blunt here but I think that an IC patient needs to find out what feels good and what doesn't feel good. You, the patient, can't tell your partner what feels good until you know yourself. And, to regain trust in your own body, you have to start slowly and rebuild your confidence that there ARE some things that do feel good, perhaps by masturbation.

(Dr. Zaslau) All good relationships are based on blood, sweat and tears. The IC relationship is no different. There are good times and bad times. Getting through the bad times helps us enjoy the good times.

(Dr. Zaslau) Let me just say that for a women who is afraid and has performance anxiety, masturbation offers a level of comfort and control. so that you can gently figure out what works for you. Think soft, gentle and slow!

(Jill O.) I've several questions from men with IC who ask about how to make sex more comfortable for them.

(Dr. Zaslau) Most men with chronic prostatitis are below the age of 40 and most can obtain a strong erection. Their problem relates to ejaculation. Most have pain just prior to ejaculation, during ejaculation or thereafter. For some, the pain is so intense that they will avoid an intimate relationship for fear of having to deal with this pain and being able to perform at the same time.

(Dr. Zaslau) Why does the pain occur?? Most patients with chronic prostatitis are young and have few other co-morbidities that effect erectile dysfunction. Their problem relates to inflammation of the prostate gland, seminal vesicles. Contraction of these glands at the time of orgasm results in intense pain. Guys with IC have a similar experience.

(Dr. Zaslau) Actually, I think that their sexual function is a marker of their underlying IC. When their sexual pain improves, so does their other voiding symptoms.

(Jill O.) What other strategies can a man use to make sex more comfortable?

(Dr. Zaslau) (1) To relax, because we want to avoid the contraction of the painful muscles.
(2) Anti-inflammatories before sex can be helpful, like motrin.
(3) Others have done well with taking a hot bath before and after intercourse.
(4) For most, simple reassurance goes along way.

The mainstay of a relationship is love and love is not sex. So, just remember that if either partner can't have sex one evening, that doesn't mean that they don't love each. Injuries happen. Illness happens. That's a part of life and apart of any mature relationship.

(Jill O.) What positions do women the least painful??

(Dr. Zaslau) What we mentioned before, experimentation is key to finding the perfect position. But, in general, women do best with positions that minimize direct penile thrusting against the bladder base. So, the positions that are most comfortable are females on top and rear entry. Some women have also had success with side to side positioning.

(Dr. Zaslau) Positions that are most painful are positions where the women has the least amount of control, such as missionary.

(Jill O.) One of our users says that they can't feel arousal when they are in so much pain... any advice??

(Dr. Zaslau) The first rule of thumb for healthy sex is to maximize the times that you are pain free. If your pain is that significant that it is blunting your sexual desire, that pain first needs to be controlled either with the addition of medications, such as amitryptiline, neurontin, ultram. It's important to remember that if you're in agony, that is NOT the time for you to try intercourse.

(Dr. Zaslau) Remember the vicious cycle of pelvic pain that we described above. A penis penetrating into spastic muscles will only cause the pain to worsen!

(Jill O.) Is it okay to have sex with a full bladder... some patients say that this feels better

(Dr. Zaslau) Yes, it may have altered the normal anatomic relationship between the bladder base and vaginal canal thus making it feel less painful!

(Jill O.) Any comments on contraception??

(Dr. Zaslau) I wouldn't use an IUD because that could trigger more inflammation but any contraceptive placed into the female (diaphragm, IUD, foam) could be irritating so pills and a condom are likely the best way to good.

(Jill O.) Folks, Dr. Z has to leave now because he has to do grand rounds tomorrow at 5am but he's asked me to stay and take any other questions that you might have. Before we do this, though, I want to tell you a story about a sex therapist who visited our IC support group several years ago. He taught sexuality to doctors going through medical school at UCSF and came to share his thoughts on IC just like Dr. Z tonight.

(Jill O.) Well, he was telling us a story about a couple in his practice who were sooo close that he actually envied their relationship. They came to counseling glowing with love. But, they had a secret. The man was a Vietnam war veteran who had stepped on a mine. His wounds were horrific and the blast had actually ripped off his penis. So, the question that our speaker posed to us was "How could a man without a penis enjoy sex." We had no clue.

(Jill O.) The answer was "outercourse," also known as "tantric sex." You can find many books on this but he gave us quick intro and I will say that I had couples leave our group that day slightly confused only to return the next month so happy and close. We even had a 70 year old couple return wishing that someone had taught them about tantric sex 50 years early to that they would have enjoyed it much more!

(Jill O.) So... what is tantric sex??? It's about bringing your partner to that point right before orgasm where you feel so great! Normally, with intercourse that might happen for a few minutes. In tantric sex, your goal is to keep your partner at that point for (are you sitting down??) an hour! If intercourse happens, if orgasm happens, thats' great but it's not required!

(Jill O.) Something else to remember is that as we get older and mature sex changes for the better. When we're teens, we went for the quickie sex, with often very athletic maneuvers. By the time that we're in our twenties, we like to caress each other more and cuddle. (Well, atleast the woman usually does.) By the time we're in our thirties and forties, the most satisfied and happy couples are those who realize that they don't have to have sex like a teenager. With age, comes closeness by talking, by holding. Sex becomes so much more meaningful. And, of course, by the time we're in our 80s, it's the closeness that we retain even when our bodies say no.

(Cricket) And that's what Making Love is all about. It has nothing to do with sexual intercourse

(Jill O.) One true test of a relationship is how do you, as a couple, handle it when one of you wants to have sex and other doesn't?? Right> It happens all the time! So, if you're the IC patient and your partner wants to have sex and you say "no," you need to qualify that and make sure that you tell your partner that it isn't your heart saying no. You still love them very very much. But right at that moment, your body is saying that you can't do it. It's no different than being in a car accident.

(Turaloora) I think this is a time to tell your partner can we just cuddle and hold each other. I need that most right now.

(Jill O.) Remember, too, that IC is below the waist. It's not above the waist and it won't change the love in your heart.

(Jill O.) It's also important to remember that it's not fair to dump on your partner if you're having a bad day. Sometimes having a safe word that says (or gives him/her warning) that sex isn't going to happen that day can save you both some heartache. So, if you come home from work feeling horrible, just let him know so that he doesn't get his hopes up and remember to maximize those times when you're feeling good!

(Jill O.) IC is a condition of remission and flare. You WILL have times when you can have sex comfortably! You don't have to force yourself to have sex during pain... because as Dr. Z said... that can make it worse. Above all else, always tell your partner that you love them deeply!

(Jill O.) So... let's open up the floor with a simple question! Could each one of you share one of the ways that you express your love for your partner?? Let's just write a list of our best romantic and sexual tips!

  • spooning
  • I tell hi I love him as often as i can.
  • We give each other massages.
  • mutual masturbation!
  • Cuddling and kissing.
  • couple showers
  • foot massages
  • some whispered erotica to me!
  • rose petals
  • Oral sex!
  • deep eye penetration. Looking deep into my lovers eyes as we cuddle. We really conect well that way.
  • whenever hubby and I go anywhere, even if it's just to walmart, we're actually 'on a date'.

Related Websites:
ICN Patient Handbook: 15 Rules for Intimate Relationships

Dr. Zaslau Contact Information:
Asst. Professor
WVU University School of Medicine
PO Boix 9251
Morgantown, WV 26506

Books & Resources That You can Purchase:
The Interstitial Cystitis Survival Guide By Dr. Robert Moldwin $13.00/$11.00 for ICN Subscribers
Patient to Patient: Managing IC & Related Conditions

The necessary disclaimer: Active and informed IC patients understand implicitly that no patient, or website or presentation on a web site should be considered medical advice. We strongly encourage you to discuss your medical care and treatments with a trusted medical care provider. Only your personal provider can and should give you medical advice.

2002, The IC Network, All Rights Reserved.
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