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Intimacy & Sex For IC Patients 2017-04-06T14:37:13+00:00
  • Lipella Clinical Study

ICN Romance and Intimacy Center

  • They’ve been together for years and his wife now has IC. He so wants to love her, but he’s afraid to try. The last time made love, it hurt her for days afterwards. And so, he turns away with regret in his eyes because he’d rather do anything then hurt her. And she looks to him with sadness in hers wondering why he doesn’t try anymore.
  • He is a young man with IC who has pain. He wants to love his wife so badly.. but arousal hurts.. and he doesn’t know what to do next. He doesn’t feel like he’s a good husband. He doesn’t feel like he’s a man anymore.
  • She is in her twenties and lost her last boyfriend due to her IC. He couldn’t wait for her to get better. She feels like no one will ever want her again.

14 Rules For Successful, Intimate Relationship

There isn’t a single couple out there that hasn’t, at one point in time, had to struggle with sexuality due to disability or illness. It’s all about the timing, the trust between partners and your ability to be clear and consistent. What do you like?? What feels good?? What turns you on?? No more guilt! With a little planning, it’s time to reconnect and play, especially when you have IC! In this section we share our 14 rules for a successful, intimate relationship!

  1. Leave guilt and rejection behind you
  2. Put your fears in context!
  3. Take slow steps as you try again!
  4. Don’t doubt the presence of pain!
  5. Have Faith in Your Love for Each Other
  6. Your sex life before IC may determine your sex life after IC
  7. Intimacy doesn’t always mean intercourse
  8. Develop an appreciation for “outercourse”
  9. Cleanliness Counts
  10. Think LUBRICATION!
  11. Trying various sexual positions
  12. Use Contraception When Appropriate
  13. Establish an “after sex” routine!
  14. It begins and ends with clear communication
  15. Suggested Readings, DVD’s, Lotions  & Toys

Rule #1: Leave Guilt and Rejection Behind You

Illness and accidents can happen to either partner and in our wedding vows, we offer love and support each other through sickness and health. If a partner is in a car accident or develops cancer, their spouse doesn’t stop loving them or caring for them. We’ll happily fix them meals, bring glasses of water to the bedside, rent videos, do the laundry, run errands and, as always, care for someone in need.

Then why are we, the IC patient, so hard on ourselves? For some reason, some of us feel that we’re not worth love anymore or, worse, that were not good spouses. Some of us even stop trying. We disagree! You, the IC patient, are no different than someone who has been in an accident and are in an extended rehabilitation. Let your partner help you. If sex hurts, let them know. Try something different. Don’t be a martyr!

Rule #2: Put your fears in context!

Of the few studies done on sexuality and IC, the research done by Margaret Rose Ph.D. (1997) revealed that some ICers begin to fear sexual activity and that “once pain was associated with sexual activity, the fear of pain interfered with sexual excitement.” This can apply not only to the patient, but to the spouse who does not want to be the cause of pain. Both partners need to talk about their fears and then develop a realistic plan. You don’t have to give up romance, but you will creating new rules and new styles. Who knows? Your new and improved sex life might be better than you ever dreamed intimacy can be. Read on to find strategies that will slowly, but surely, calm those fears.

Rule #3: Take slow steps as you try again!

Just like anyone recovering from an accident, sexual activity may come slowly.. very slowly.. at first. We can’t expect to be able to dive right in, the first night afterwards, and have wild, glorious, athletic sex that lasts for hours. We may not be able to handle intercourse first, but we can try other forms of tenderness and arousal. The key is to any recovery is to go slowly, in small steps and be prepared to try something new if pain occurs. You’ll never know what you’ll discover next!

Rule #4: Don’t doubt the presence of pain!

Three research studies on Sexuality and IC (ICA 1993, 1995 and Rose, 1997) have revealed that many IC patients experience pain or discomfort at various stages of sexual intimacy. Why?? It’s all about the muscle tension. Men with IC often have their discomfort at the moment of orgasm when the muscles spasm the hardest. Women with IC usually find the act, itself, comfortable. It’s the day after that is often uncomfortable as muscles gently but steadily spasm. Others may find deep penetration uncomfortable. Accept the fact that some days, your pain may prevent you from engaging in sexual intercourse. Accept the fact that on other days, you may be able to enjoy intimacy. If you stop trying, you’ll never know.

Rule #5: Have Faith in Your Love for Each Other

The presence of pain and chronic illness casts uncertainty on various portions of our lives but it does not change the love and caring we feel in our hearts. When we say “no, I can’t do this tonight,” we’re not saying that we don’t love our partners. We are saying that right now, just at this very moment, our body isn’t strong enough. Always have faith and trust in your love for each other.

Rule #6: Your sex life before IC may determine your sex life after IC

Can we blame IC on the collapse of a relationship?? Can we blame IC on our inability to enjoy intimacy? Maggies research results clearly demonstrated that women who reported high levels of sexual satisfaction prior to developing IC reported high levels of sexual satisfaction after IC. In addition, she found that women who scored high on sexual communication, range of sexual experiences, positive mood and drive also reported high levels of satisfaction after the onset of IC.

Basically, if you are a good communicator about sex and if you were willing to explore a variety of sexual experiences, then you have a much better chance of having a good sexual life after IC. And, if not, take a moment to learn the from the successes of other couples! Communication, experimentation and optimism are the common factors of sexual success!

Rule #7: Intimacy doesn’t always mean intercourse

Intimacy is an essential component of relationships and IC patients are often interested in exploring alternatives. In IC-Redwood Empire, one of our best guest speakers was a physician who taught sex education to medical school students. Of the patients in his practice, one had an outstanding and very satisfying sexual relationship. Much to our surprise, this gentleman had a war wound from Vietnam inwhich he lost most of his penis.

How could a man without a penis have sex life that other men envied? Outercourse. He and his partner practiced outercourse  and tantric sex which means that, in their case, their goal was to caress and stroke their partner to that point right before orgasm that feels so good. Your goal is to keep your partner there for an hour with or without intercourse. Clearly, sex does not have to involve deep thrusting and intercourse to be satisfying and, in this case, this couple used “tantric sex” as a satisfying alternative.

Rule #8: Develop an appreciation for “outercourse.” It’s wonderful too!

A research study completed by Duke University found that only 35% of the respondents reported pain with foreplay or orgasm. This suggests that 65% of icers could engage, comfortably, with foreplay. Given the fact that there will be days when penetration is difficult, outercourse (stroking, arousal, touching, caressing) may be a wonderful option.

We realize that “tantric sex” sounds like “California psychobabble.” It is, though, a viable, reliable and fulfilling addition to normal intercourse and includes more stroking and caressing. Rather than seeking orgasm quickly, tantric sex focuses on bringing your partner to the point just before orgasm and then extending that point for longer periods of time. If orgasm happens, that’s fine. If it doesn’t happen, that’s okay too. In tantric sex, the gentlest of movements can become thoroughly arousing and it is a viable option during those moments when IC makes penetration difficult.

Rule #9: Cleanliness Counts

In the August 15, 1996 issue of the New England Journal of Medicine, research by Hooton indicated that the act of sexual intercourse increased the risk of urinary infection from 1.0 to 9.0 during sexually active periods in pre-menopausal women. Why? The answer is most likely anatomical. A womans urethra is relatively short and it’s possible that the act of intercourse can push bacteria from her rectum or her partners penis into her bladder. “Honeymoon cystitis” has been a painful fact for brides for centuries.

Angela Kilmartin, in her breakthrough book of the early 1980s Cystitis: The Complete Self Help Guide, focuses on cleanliness prior to sex. She believes that it is foolish for a woman to engage in sex without first washing their perineum. How?? With cool WATER in a water bottle, on toilet tissue or kleenex, rinsing from front to back twice. (Washing after every bowel movement is recommended too.) If it’s a spontaneous encounter, excuse yourself briefly and go urinate and then rinse yourself with water. As Ms. Kilmartin says, “He’ll be too busy arranging himself to notice.” If at all possible, make showering together part of your foreplay.

Ms. Kilmartin also recommended that men should eliminate or reduce any possible areas of infection which can be passed to the female partner. This includes a daily rinsing of the penis and foreskin, especially before sex. A careful examination of the mans hands and fingers, fingernails and callouses can reduce some of the more common causes of inflammation, particularly if he works in construction and has particles of dust under fingernails, etc. Men who work with chemicals of any types should scrub and rinse their hands several times even before returning home.

Lastly, Ms. Kilmartin reminds everyone that anal intercourse always increases the risk for infection. Always rinse fingers, hands, body parts and/or vibrators that may enter the rectum, before use on any other part of the body.

Rule #10: Think LUBRICATION!

Did you know that vaginal skin is ten times more sensitive than any other skin on your body? The friction of any type of sexual activity can inflame these sensitive tissues if arousal isn’t complete or if their isn’t enough lubrication. Lubrication is an essential tool so that vulva and vagina aren’t abraded and bruised. It is not unusual to use significant amounts of lubricant with each sex act.. i.e. half a tube of K-Y jelly or Astroglide. We’ve found several lubricants that you might find helpful, especially the Very Private Intimate Moisture and the Desert Harvest Aloe Versa Personal Gel.

Rule #11: Trying various sexual positions

Sexual positions can also provoke more or less pain, particularly during penetration. You may want to experiment with different positions, particularly those which take pressure off the urethra. Dr. Ruth recommends the spoon position… as an ideal option for women who are pregnant. Other positions can include: the woman on top, the woman astride the man in a chair, or from behind. Remember, penetration is always easiest when the woman is fully aroused!

Rule #12: Use Contraception When Appropriate

Some IC patients and spouses have anecdotally reported that some creams and spermicides are irritants to both the vagina and the tip of the penis. The New England Journal of Medicine referenced above specifically cites the use of a diaphragm with spermicide as being a possible cause of some infections. Others ICers have found that they may have an allergy to the rubber in condoms. If you develop irritation or symptoms after trying a new type of contraception, review it with your physician. Ms. Kilmartin offers three logical rules for contraception: (1) If it’s comfortable and you are healthy, use it. (2) If you develop strange aches and pains coincidentally, check it out. (3) If it hurts, change it!

Rule #13: Establish an “after sex” routine!

Some believe that the first fifteen minutes after sex are when you, the IC patient, can do the most good to prevent infection and reduce inflammation. Most women have been told that they should urinate after sex to expel any possible bacteria that may have been introduced to the bladder during sex. This makes total sense, but it hasn’t been proven to completely eliminate possible infection and/or inflammation.

Given the fact that women often swell, and tissues feel hot and tender, it is also helpful to rinse the area with cool or cold water (no irritative soaps, please!). This can help soothe the tissues and reduce possible infectious organisms. Some find cold or heat packs helpful, while others use small, finger shaped balloons filled with water and frozen to be inserted briefly into the vagina after sex to ease the burn or inflammation. Still others may use a gently warmed or cooled glass wand inserted into the vagina.

If possible, let those tissues rest and cool down. Lay in bed without underwear and, if you have to get up, choose to wear long skirts and no underwear at all.

Some patients may use a muscle relaxant and/or heating pads to reduce muscle spasms. The BodiHeat heating pad can be worn all day. Vaginal valium suppositories can be very helpful along with, if needed, some pain medication.

Rule #14: It begins and ends with clear communication

During sex, each partner should listen to the cues of the other. If someone says “ouch”, pulls back, slows, falters or says “no” to something happening during sex, respect them. If it hurts, try something else. Be creative. Don’t take pain personally. It says nothing about your love for each other. If either partner is unfit for sexual activity, kiss them, give them a hug and remind them that your love is steadfast.

Suggested Readings & Resources

Secret Suffering – How Women’s Sexual and Pelvic Pain Affects Their Relationships

When one of every five women between ages 18 and 50 in the United States have sex, it hurts, often badly. Until now, very few patients ever talked about their experience until a new IC hero, Susan Bilheimer, arrived on the scene. A chronic pelvic pain patient, Susan has been a driving force in creating this book and, partnered with Dr. Robert Echenberg, now offers hope and encouragement to the millions of women struggling with this condition.

Secret Suffering: Understanding Women’s Sexual Pain and How That Affects Relationships has it all. Patient stories, a husbands point of view, a same sex couples experience with pelvic pain, the dilemma confronting single women with chronic pain, faith and the poignant story of two men who experience sexual pain. They talk about the difficulties working with the medical community but the great hope promised by a new, far more accepting medical paradigm of chronic pelvic and sexual pain.

The appendix offers 64 tips to relieve sexual and pelvic pain!

I can’t say enough about this book. It’s now at the very top of books I will be recommending to patients struggling with IC and intimacy. This will, beyond any other book I can suggest, break your isolation and show you that you are not alone and that there is hope! It’s truly a must read. Buy it now!