If the ICN has helped you Please Read Our
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Revision: May 2003 HTML Rev: Sept. 19, 1999 Created: June 1999
and/or given you
comfort
during those difficult nights,
we hope that you will become
a subscriber.
Diane Lopresti
Diane Manhatten
Jill Osborne
Sexuality & Relationships
- Is romance possible?
- Rule #1: Leave guilt and rejection behind you
- Rule #2: Put your fears in context!
- Rule #3: Take slow steps as you try again!
- Rule #4: Don't doubt the presence of pain!
- Rule #5: Have Faith in Your Love for Each Other
- Rule #6: Your sex life before IC may determine your sex life after IC
- Rule #7: Intimacy doesn't always mean intercourse
- Rule #8: Develop an appreciation for "outercourse"
- Rule #9: Cleanliness Counts
- Rule #10: Think LUBRICATION!
- Rule #11: Trying various sexual positions
- Rule #12: Use Contraception When Appropriate
- Rule #13: Establish an "after sex" routine!
- Rule #14: It begins and ends with clear communication
- Rule #15: Learn More from The Experts
- Other Web Sites of Interest
- Additional Readings
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.
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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.
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 have a safe word if the pain begins to hurt. Be
prepared to rest, slow down or try something new. 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. Some find intercourse
and/or deep penetration uncomfortable. Others patients may experience pain
for days afterwards. 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 and was unable to engage in
penetration. Yet, his relationship was sound and fulfilling. He was a good
communicator with his partner and he was willing to explore alternatives.
Clearly, sexual relations do 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. Cruise the web for more info on tantric sex.
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. Your partner won't notice! 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.
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 "post coital micturation" 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 shapped ballons filled with water and frozen to be inserted briefly into the vagina after sex to ease the burn or inflammation.
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.
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.
Rule #15: Learn More from The Experts
There are many websites on the
web that discuss sex in an open, tasteful and lighthearted way. Our
favorite is Dr. Ruth
On-line who offers great daily tips, new ideas, resources, books and
wonderfully encouraging and open information on sex. Visit the site as
soon as you can!
- Medical Celibates Network - provides information and resources for people who cannot have sex for medical reasons.
- Good Vibrations is a store in San Francisco that provides a wide variety of sexual toys. While that is not our central focus here, they do offer lubricants, books, videos and an extensive collection of sex literature by mail order
- Condomania - an extensive website offering condoms, lubricants, books, accessories, videos.
- IC and Sex Tip sheet.
- Sexuality Studies
- Society for Human Sexuality
- Eves Garden
- "Sex for Dummies" by Dr. Ruth Westheimer.
- "The New Good Vibrations Guide to Sex" by Cathy Winks & Anne Semans
- "The Practical Encyclopedia of Sex and Health" by Men's Health & Prevention Magazines
- "Sex, Lies and Stereotypes: Women and Interstitial Cystitis," Denise Webster, Journal of Sex Research, 33(3), 1996.
- "Sex and Interstitial Cystitis: Explaing the Pain and Planning Self-Care," Denise Webster, Urologic Nursing, 13(1), 1993.
- "Use and Effectiveness of Sexual Self-care Strategies for Interstitial Cystitis," Denise Webster & Tim Brennan, Urologic Nursing, 15(1), 1994.