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There is limited scientific data on the subject of interstitial cystitis and pregnancy.
In following combines findings of ICA Pilot Research Program studies, Fishbein Family IC Foundation grants, with other scientific studies, as well as anecdotal information from healthcare providers and IC patients.
In1989, ICA study surveyed 48 IC patients who had gone through 78 pregnancies, and yielded valuable data on the effects of pregnancy on IC. Participants rated the severity of their pain, frequency, urgency, and pressure symptoms before pregnancy, during each trimester, and after delivery. Findings were 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 during pregnancy, peaking inthe third trimester. Pain did not increase.
- Patients with mild symptoms prior ot pregnancy reported a slight worsening of symptoms as pregnancy progressed.
- Patients with severe symptoms prior to pregnancy noted improvement, except in the third trimester.
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 painful sex -- before, during, and/or after sexual activity -- 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.
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 medicines during pregnancy. If you anticipate the need for medication during your pregnancy, consider an obstetrician specializing in high-risk pregnancy.
Communication among your healthcare team is especially important. Make a point to ensure all of your doctors -- obstetrician, urologist, pain management specialist, dietitian, physical therapist, internist -- are in touch with each other. If your health plan offers limited choice in prenatal care providers, you may need to educate your assigned providers about IC.
Today, most doctors advise patients to discontinue all but essential medicines prior to attempting conception and to avoid all medicines during pregnancy, especially during the first trimester. There are some medicines instilled directly into the bladder, such as heparin and bupivacaine (Marcaine), which could be considered for use after the first trimester. While no medicine is risk-free in pregnancy, instilled heparin and Marcaine have very little absorption. However the use of any medicine 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 medicine 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 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.
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 medicines pose. Nevertheless, certain medicines 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.
Common pregnancy complaints -- urinary frequency, bacterial bladder infections, and constipation -- can be even 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.
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. Good nutrition during pregnancy is very important. Talk with your doctor if there are foods you do not eat because of your IC.
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 electrical nerve stimulation units, and some others should be avoided during pregnancy. It is crucial that you consult your physician before attempting any treatment during pregnancy.
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. If your IC is bothered by diet, talk with your doctor before using an elimination diet. 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. Talk with your doctor before you take pre-natal vitamins. If you know you are not sensitive to any specific vitamins but find that prenatal vitamins affect you, ask your doctor about trying another brands. Different brands contain different fillers and addivties -- and sometimes a specific filler or additive can be problematic.
A birth plan is a document that you and your partner can write during your pregnancy, which lists your preferences for the childbirth process. Typical topics include
- Length of time you would like to labor at home
- Whether or not you wish to be administered pain medicine during labor
- Whether you will permit the use of labor-inducing drugs
- 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
A birth plan can be especially helpful for people with IC because you can include information about IC, and present advance copies of the document to staff at the hospital or birthing center. 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:
- 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 materials available for new mothers. 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 medicine taken by the mother passes to her baby through the breast milk. Several medicnes 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 medicines 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 medicines 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.
Check your lcoal bookstore or library for books about parenting with a chronic illness. There are also many good websites sponsored by childbirth, parenting, and chronic illness organizations. 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. In spite of the difficulties some IC patients have faced in pregnancy and parenting, the overwhelming majority have said that the joys of parenthood greatly overshadow the many obstacles imposed by IC.
Revised December 8, 2008
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