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 There is surprisingly little scientific data on the subject of interstitial cystitis and pregnancy. In order to learn more about the effects of pregnancy on IC, the Interstitial Cystitis Association (ICA) conducted the first and only Pilot Study on Pregnancy and IC in 1989. The study surveyed 48 IC patients who had gone through 78 pregnancies. This Fact Sheet combines statistics obtained in the 1989 study, scientific and anecdotal information from physicians and other healthcare practitioners, anecdotal information from patients attending ICA meetings, and information on other issues of concern to IC patients contemplating pregnancy. Clearly, much more needs to be done in this area. Research into pregnancy and IC and the role of hormones in IC remains an important area to be explored.
Based on limited evidence collected to date, infertility does not appear to affect IC patients any more than the general population. Conception may be more difficult to achieve, however, for those who experience pain before, during, and/or after sexual activity and who may choose to avoid or limit sex when symptoms are severe. If sex is uncomfortable for you, try to pinpoint ovulation and limit intercourse to the most fertile days of your menstrual cycle. Books on fertility awareness can be helpful and ovulation prediction kits are widely available at pharmacies. The ICA Resource Materials Guide provides helpful information on sex and IC, including an informative brochure entitled IC and Sexuality.
Planning your pregnancy will enable you to have control over a variety of factors. Most patients feel that the best time to get pregnant is when IC symptoms are under control or in remission. If possible, locate and establish a relationship with an obstetrician who is knowledgeable about IC.
In the absence of established risk factors or complicating diseases, pregnancies of women with IC are not necessarily considered "high risk.” Some patients prefer minimal prenatal testing and a low-intervention birth, while others may feel more comfortable with a more highly managed pregnancy and birth. This decision is a matter of personal choice and an important factor to consider when you are choosing your doctor.
Although there is comparatively little scientific research on pregnancy and IC, there is a significant amount of research on women who have used pain medication during pregnancy. If you anticipate the need for medication during your pregnancy, consider an obstetrician specializing in high-risk pregnancy.
During pregnancy, communication between your doctors— obstetrician, urologist, pain management specialist, internist, etc.—is especially important. If your health plan offers limited choice in prenatal care providers, you may need to educate your assigned providers about IC.
Numerous studies indicate that proper nutrition is vital both before and during pregnancy. If you have not already done so, try to identify foods and beverages that are irritating to your bladder, before you conceive. Patients whose IC is exacerbated by diet can identify culprit substances by charting a pattern of negative reactions to specific foods or by using an elimination diet, starting with "safe” items and adding one questionable item at a time. While many patients can enjoy a variety of foods and beverages during pregnancy with no ill effects, a typical pregnancy diet that includes, for example, citrus fruits and juices may cause symptoms to flare. You can explore alternate means of introducing essential nutrients into your diet with your doctor or a nutritionist.
Bear in mind that some vitamins—particularly the B and C vitamins—can pose problems for IC patients. Pre-natal vitamins, which are often especially potent, should be used with caution, and only under the supervision of your doctor.
If you know you are not sensitive to any specific vitamins but still find that prenatal vitamins affect you, you might want to try various brands, because fillers and additives can sometimes be problematic, as well.
The ICA's 1989 study yielded valuable but limited data on the effects of pregnancy on IC. In response to our questionnaire, patients rated the severity of their pain, frequency, urgency, and pressure symptoms before pregnancy, during each trimester, and after delivery. The pregnancies were divided into groups having mild, moderate, or severe symptoms before pregnancy. The majority of patients experienced moderate symptoms prior to pregnancy. Their symptoms increased only slightly throughout pregnancy, peaking in the third trimester; pain did not increase. Patients with mild symptoms prior to pregnancy reported a slight worsening of symptoms as pregnancy progressed. Patients with severe symptoms prior to pregnancy noted improvement, except in the third trimester.
Common pregnancy complaints of urinary frequency, bacterial bladder infections, and constipation can be more difficult for pregnant IC patients. Increased frequency is normal, especially in the first and third trimesters. As bacterial bladder infections are common during pregnancy, and can be confused with IC symptoms, a urinalysis is recommended at every prenatal visit. Constipation, which can be caused by iron supplements often prescribed in pregnancy, may trigger an IC flare. You might want to add additional fiber to your diet to promote regular elimination, but this should only be done under the supervision of your doctor.
Today, most doctors advise patients to discontinue all but essential medications prior to attempting conception and to avoid all medications during pregnancy, especially during the first trimester. There are some medications instilled directly into the bladder, such as heparin and Marcaine, which could be considered for use after the first trimester. While no medication is risk-free in pregnancy, instilled heparin and Marcaine have very little absorption. However the use of any medication for IC during pregnancy should be discussed with a doctor who specializes in high-risk pregnancy.
As noted above, the ICA study revealed that patients beginning pregnancy with mild symptoms noted only slight changes; pain was not increased in the moderate group; and symptoms generally improved in the group with severe symptoms. This information suggests the majority of pregnant IC patients may not need medication or should be able to postpone treatment until after delivery, but these data may be skewed by the possibility that symptoms were mild or moderate because the patients were using medications or treatments that were keeping their IC under control. Nevertheless, this finding echoes anecdotal evidence from physicians that IC patients either improve or have little change in symptoms during pregnancy. Treatment of IC during pregnancy is a personal decision that should be based on individual need as well as advice and information from your doctor and other healthcare providers.br>
Some patients do experience a worsening of symptoms, however, and will seek treatment. In the ICA study, a small percentage of these pregnancies were rated as very difficult. All patients reported an increase in symptoms in the third trimester. In ICA pregnancy workshops, several patients reported taking different types of medication at various times during pregnancy. For some patients, the benefits of IC treatment may outweigh the risks that medications pose. Nevertheless, certain medications used in the treatment of IC should be completely avoided during pregnancy. In addition to your doctor, you can get information about the risk of medications during pregnancy from a genetics counselor.
A variety of non-drug options can provide relief for those who wish to remain medication-free, especially in the critical first trimester. Modification of diet and relaxation exercises—including yoga, childbirth techniques, and/or walking–are helpful strategies.
Strong pelvic floor muscles can aid a smooth vaginal delivery. However, pelvic floor dysfunction, which occurs in some IC patients, results in overly tight pelvic muscles. If your pelvic muscles are not already too tight, exercises to strengthen these muscles (called Kegel exercises) can be done before, during, and after pregnancy to maintain good pelvic muscle tone. Certain self-care measures, such as hot baths, the use of the TENS unit, and some others should be avoided during pregnancy. It is crucial that you consult your physician before attempting any treatment during pregnancy.
A Birth Plan is a personal document that you and your partner can write during your pregnancy, which lists your preferences for the childbirth process. Typical topics include the length of time you would like to labor at home, whether or not you wish to be administered pain medication during labor, whether you will permit the use of pitocin or other labor-inducing substances, whether or not you will permit non-essential hospital personnel (such as medical students or student nurses) to observe your birth process, what type of anesthesia you would prefer should that become an issue, how long you would like your baby to remain with you in the delivery or birthing room, whether or not you want your partner to be involved in cutting the umbilical cord, whether and when you want a circumcision performed, whether you want to breastfeed exclusively or allow hospital staff to bottle feed your baby, and so on.
A Birth Plan can be especially helpful for IC patients because patients can include information on IC itself, and present advance copies of the document to their obstetricians as well as members of the obstetric nursing staff at their hospital or birthing center. You should be prepared for medical personnel who may assist in your birth to be unfamiliar with IC. Include any special instructions related to your IC in your Birth Plan and make sure that you, your doctor and your labor coach have several copies of this on hand when you arrive to deliver your baby.
IC patients reported that their pregnancies with IC were as successful as the pregnancies they had before IC. Approximately one-third of the questionnaire respondents delivered vaginally without anesthesia, while fewer than onethird delivered vaginally with anesthesia. Another one-third delivered by C-section. Because many factors other than IC can lead to a planned or unplanned C-section delivery, this data is not conclusive and may not represent the delivery patterns of the general IC population. However, it is important to note that the type of delivery did not affect IC symptoms for these patients.
Each type of delivery has its pros and cons for the IC patient. A vaginal delivery may be chosen to avoid anesthesia, catheterization, and the avoidance of major pelvic surgery. However, be aware that catheterization, anesthesia, and fetal monitoring, and even surgery (caesarean section) may become necessary if complications unrelated to IC should develop during labor. Scheduled C-section delivery can avoid prolonged labor, repeated vaginal exams, administration of drugs to induce labor, and trauma to the bladder as the baby moves through the birth canal. However, a C-section, which is major pelvic surgery, will necessitate catheterization, anesthesia, possible trauma to the bladder as it is manipulated during surgery, and a longer recovery following childbirth. C-section can also limit your interaction with your newborn, as well as your overall mobility, as your incision heals. These are issues of special importance to IC patients and should be thoroughly discussed with your doctor. Be prepared for a last-minute change in delivery plans and discuss any concerns with your doctor ahead of time.
Mothers with IC should give special consideration to issues involved in the decision to breastfeed or bottle-feed the baby. For both mother and infant, there are significant nutritional, psychological, and immunological advantages to breastfeeding. Breastfed infants receive immunity to an array of common illnesses and have lower incidences of food allergies, and a variety of other common problems. The experience of breastfeeding is often profoundly positive for the mother. In addition, some patients who were not symptomatic in pregnancy have reported prolonged remission until breastfeeding was discontinued. Some new mothers may need determination and external support to succeed at it. Most medical centers have breastfeeding counselors whose job it is to help the new mother succeed at breastfeeding. In addition, there are groups, such as La Leche League, that promote breastfeeding and have an array of materials available for new mothers with questions and concerns. There are also new mothers’ groups where women can go for support and encouragement.
For IC patients, there may be some disadvantages to breastfeeding. Studies have shown that virtually any medication taken by the mother passes to her baby through the breast milk. Several medications used to treat IC can have serious known or unknown effects on the breastfed baby. Patients who experience a flare in symptoms during pregnancy or after delivery may wish to resume their previous medications or helpful therapies as soon as possible after the birth, and may choose to bottle-feed for this reason. Other mothers who begin breastfeeding later abandon it in order to resume medication when symptoms flare. Lack of sleep can be another consideration. Supplementary bottle-feeding by a partner or other family member can provide the new mother with much-needed rest. Breast milk can be expressed on a regular basis and frozen for later use, or formula can be used for these supplemental feedings. Ultimately, the mother with IC should make the decision based on her individual circumstances, and in consultation with her ob-gyn or midwife, urologist, and pediatrician.
While library and bookstore shelves are overflowing with childcare and parenting resources, few address the concerns of parents with chronic illnesses. Fortunately, this trend is changing. The Internet is full of sites sponsored by childbirth, parenting, and chronic illness organizations. Many family counselors are now specializing in the treatment of patients with chronic illnesses. Support groups are beginning to discuss parenting challenges for those with IC and other disorders. Raising children while living with a painful and challenging disease like IC can, at times, produce very stressful situations. Seek help if you feel overwhelmed and are having problems coping with new motherhood.
The ICA will continue to gather information and report new data as it becomes available. In the meantime, patients might consider that in spite of the difficulties some IC patients have faced in pregnancy and parenting, the overwhelming majority have said unequivocally that the joys of parenthood greatly overshadow the many obstacles imposed by IC.
Please contact the ICA at the contact numbers shown below.
Some resources that pregnant IC patients may find helpful:
The ICA Resource Materials Guide offers an array of literature on topics of interest to IC patients. The Guide may be found on the ICA’s Website at www.ichelp.org or as an insert in our quarterly newsletter, the ICA Update.
A Delicate Balance, Living Successfully with Chronic Illness, by Susan Milstrey Wells, available through the ICA’s Resource Materials Guide, deals with all aspects of surviving the IC experience.
International Childbirth Education Association (ICEA) offers information and support on childbirth and parenting. 952- 854- 8660 / www.icea.org
La Leche League International – breastfeeding information and support. 1-800-LA LECHE / www.lalecheleague.org Lamaze International – childbirth information and support. 1- 800-368-4404/ www.lamaze.com
WhatToExpect.com, from the authors of What to Expect When You’re Expecting. Erickson DR, Propert KJ. Pregnancy and interstitial cystitis/painful bladder syndrome. Urol Clin North Am. 2007 Feb;34(1):61-9. [see Abstract* below]
* Painful bladder syndrome (PBS) and interstitial cystitis (IC) often affect women of child-bearing age. This article includes information of interest to PBS/IC patients who are pregnant or contemplating pregnancy, and to the clinicians who care for them. One topic is how pregnancy affects PBS/IC symptoms, although little is known at this time. The article also describes the pregnancy risks associated with the most commonly used PBS/IC treatments. Finally, the current knowledge regarding genetic factors in IC is discussed.
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