IC affects many aspects of a person’s daily life. From following a restrictive diet to limiting time away from home, it has many effects on quality of life. Sexual function is one of the biggest aspects of a person’s life that is affected by IC. In this post, I will be discussing how IC/BPS and sexual dysfunction correlate as well as how to prevent a flare up of symptoms after sexual activity.

Who is affected by sexual dysfunction?

In a survey conducted by the Interstitial Cystitis Association, at least 90% of respondents (not able to find total # of respondents on ICA website) reported that their IC has kept them from sharing intimacy with their partner. Two studies comparing sexual dysfunction among women with IC and women without IC concluded those with IC have significantly more sexual dysfunction than those without IC. Many people with IC have pain with penetration, intercourse or orgasm, and sexual activity may cause a flare in the hours or day following the act.

Sexual dysfunction is not limited to just females. Men who have IC also experience perineal, urethral, testicular, and ejaculatory pain as well as erectile dysfunction and low libido. In women, sexual pain often results from IC/BPS, vaginitis, vestibulodynia and pelvic floor dysfunction.

Sexual dysfunction has a detrimental effect on quality of life in people suffering from IC. Consistent symptoms following sexual activity can lead to low sexual desire, poor self image, strain/tension in a relationship, avoidance, depression and feelings of guilt and inadequacy.

What causes it?

There are a few potential causes of sexual dysfunction. First, the anatomic proximity of the vagina and the bladder can cause physical irritation to the urethra and urinary bladder during penetrative vaginal intercourse. Second, the bladder and pelvis share muscles and nerve pathways and can result in shared symptoms.

Another cause can be attributed to pain and fear associated with sexual activity can induce tension in the pelvic floor muscles. This can lead to sexual dysfunction as well as trauma in the vagina and external genitalia.

An additional cause can be neurological. When there is a persistent presence of inflammatory stimulations, it can convert the pelvic pain to neurological pain, ultimately leading to chronic pain syndrome.

Preventative Measures

Speaking with a medical provider about sexual dysfunction can be difficult, but it is of great importance. Clinicians are encouraged to ask about sexual dysfunction issues as many people are reluctant to discuss the topic during a medical encounter. The clinician can help coordinate care with psychologists, physiotherapists, and sex therapists.

Before sexual activity, try one or more of the following:

• Meditation, guided breathing or progressive muscle relaxation

• Cold or heat therapy

• Plan for sexual activity after IC treatments (physiotherapy, bladder instillations, trigger-point injections, nerve blocks, etc)

• Test out products before using them with your partner (lubricant, dilator, vibrator, etc)

• Utilize a dilator prior to intercourse

• Pre-medicate using muscle antispasmodics, anticholinergics, anti-anxiety agents, topical pain reducer, pain medication or valium suppository

• Take preventative supplements such as D-Mannose

Here’s what you can do during sexual activity:

• Limit thrusting time to 5-10 minutes

• Utilize hypoallergenic, non-irritating lubrication (try Slippery Stuff, Aloe Glide)

• Try different positions such as angled missionary, side lying or “spoon” position, or rear entry with forward lean

• Keep your mind as clear as possible. Push any negative thoughts out as best you can

• If it hurts, tell your partner and STOP. Do not continue and cause yourself pain just to help them get an orgasm. If they love you, they will understand

*Dilators, d-mannose and hypoallergenic, non-irritating lubricants can be found here.

Explore alternatives to intercourse:

• Outercourse or creative thrusting

• Avoidance of vaginal penetration by resting the partner’s genitals on top of the pubic area or between thighs, breasts, or buttocks

• Oral or manual pleasuring

• Mutual masturbation

• Sex talk, sharing fantasies, cuddling, reading erotica, bathing together, or sensual massage

Things you can do after sexual activity to prevent a flare:

• Urinate as soon as possible

• Take any prescribed medications that help with the discomfort

• Drink water

• Take Phenazopyridine (Azo, Pyridium)*

• Take D-mannose*

• Apply heat or ice to pelvic floor or wherever is most comfortable

• Valium suppository* overnight

• Stretch pelvic floor

• Meditate or practice breathing

*Only after discussing with your healthcare provider

Q&A:

Q: How can I calm pelvic pain that follows sex?

A: Finding the best thing to calm a flare caused by penetrative intercourse can vary person to person. My go-to is to press an ice pack on my pelvic floor, take a Pyridium, and drink about 8-16 oz of water. Other people find success utilizing a heating pad, a valium suppository, stretching the pelvic floor, or taking medication. You must find what works best for you through trial and error.

Q: How can I reduce pain during intercourse?

A: First, I would definitely recommend discussing this with your doctor – whether it’s primary care, a urologist, a urogynecologist, etc, they can point you in the right direction. You may need pelvic floor physiotherapy, which can help address any pelvic floor dysfunction that exists. You also may benefit from mental health counseling. I had a pelvic floor physiotherapist explain that if you are not relaxed during sex, and are tensing/clenching your pelvic floor, that you are basically setting yourself up for pain. If your brain is thinking “UGH, it’s gonna hurt” then 9 out of 10 times it’s probably going to hurt.

Q: Why does sex, no matter what, always cause a flare?

A: You most likely have some pelvic floor dysfunction happening. Ask your doctor for a referral to pelvic floor PT if possible. Your therapist can work with you to decrease pain and other symptoms through external and internal therapy, stretches, and other exercises.

Q: How can I explain to my spouse that I have a low sex drive without hurting their feelings?

A: This is always a tricky situation. You are with your partner because you love and care about them. You want to make them happy and please them every once in awhile.

The most important thing I have learned over the years is to make sure you are with someone who loves and cares about you NO MATTER WHAT. If you are married, remember the vow “in sickness and in health”.

As you read in this post, IC usually comes along with sexual dysfunction, which may mean that you have a very low or no desire to be intimate with your partner. And if you avoid intimacy with them, they may become self conscious or may be hurt by your lack of desire.

You must have a conversation with them early on where you educate them on IC as a whole. This means getting into the topic of intimacy and the fact that you may not have the sex drive you used to or the thought of sex is too triggering at this point in time. You may need to explain that it has nothing to do with your love for them or attraction to them, but how your chronic illness is affecting you mentally and physically.

Hopefully, they are understanding. And if you are up for it, you can discuss or explore different alternatives to penetrative sex (see recommendations above). I hope this advice helps!

The Bottom line

Being intimate while living with IC can be difficult, but not impossible. Have the conversation with your partner (whether they are new or a long-term relationship) to keep them in the loop re what’s going on with you mentally and physically. Seek additional help through pelvic floor physiotherapy or mental health counseling if your doctor thinks you may benefit from it. I hope the information and tips included in this post help and inspire you to not give up on your sex life!

Callie