Interstitial Cystitis and Pregnancy

Jill Osborne MA – ICN Founder

If you’re wondering if you can have a baby after a diagnosis of IC, take heart! One of the best parts of my job is being able to encourage and help interstitial cystitis and bladder pain patients (IC/BPS) who want to start a family. IC does not change your heart, your soul and, most certainly, your ability to love a child. In fact, I think that IC patients make great mothers and fathers because you are compassionate, kind, caring and would never turn away from someone in pain. But it does take work and planning to have a successful pregnancy. I hope that you join the thousands of IC patients who have had successful and joyful families! Be strong! You can do this. – Jill O.

– Lesa’s Pregnancy Journal

IC patient Lesa F, documented her pregnancy in an on-line pregnancy journal to share with you her struggles and successes including the birth of her beautiful daughter Kaitlyn. Read it now!

– Melanie’s Pregnancy Planning Guide

ICN user Melanie contributed sections of the the article below which shares some valuable questions that you should explore if you considering becoming pregnant. We’ve adapted and expanded this with what we hope will be useful suggestions. Read it now!

How Pregnancy Affects Interstitial Cystitis?

Very little research has been done studying pregnancy and interstitial cystitis. The one unpublished study available was conducted by the Interstitial Cystitis Association in 1989. It gathered information from 48 IC patients who experienced 78 pregnancies and provided valuable baseline information. Conception, for example, appears to be normal in IC patients. Infertility doesn’t appear to affect most IC patients, though the pain often associated with intimate relations can be a barrier.

The most common question is “Will my IC get worse during a pregnancy?” In our experience, some IC patients go into remission or experience a decrease of their symptoms during their pregnancy. Other patients report that their symptoms worsen slightly as the pregnancy advances. The ICA data suggests that the symptoms of IC decrease during the first two trimesters and then increase slightly during the third trimester, most likely due to the baby putting pressure on the bladder.

In the IC Survival Guide, Dr. Robert Moldwin shares that his observations aren’t quite so favorable. He’s seen the majority of his patients experience some degree of bladder worsening throughout the pregnancy which he believes is due to the cessation of oral therapies. He concludes that while pregnancy can be a tough time for patients “most patients make through without any problems.” He also suggests the use of conservative therapies, such as yoga, meditation, relaxation, self-hypnosis, acupuncture, diet and the avoidance of constipation to help reduce IC related discomfort.

With our now better understanding of the pelvic floor dysfunction in IC and chronic pelvic pain, a greater focus is being placed on the identification and treatment of pelvic floor dysfunction. Some of the pain that can occur during pregnancy may come from the pelvic floor. Physical therapist, Isa Herrera, has written Ending Pain in Pregnancy that can cope with pain during pregnancy!

Medication Use During Pregnancy

The use of various IC therapies during pregnancy and their associated risk of causing fetal abnormalities is a complex question that can ONLY be answered after careful consideration, research and discussions with YOUR personal medical care providers. Under no circumstance should you accept another IC patient report that they used a medication “safely” during THEIR pregnancy as justification for you using ANY medications during YOUR pregnancy. Each mother and fetus are unique individuals that will have their own vulnerabilities and drug sensitivities. No patient can guarantee that any medication is safe during pregnancy.

In early 2007, Deborah Erickson, MD and Kathleen Propert, ScD made an astounding contribution to the IC community with their journal article “Pregnancy and IC/PBS” which discusses the use of common IC medications and medical devices during pregnancy and their potential risk of causing fetal abnormalities.

To disclose the potential safety and/or risk of various medications during pregnancy, the US FDA created a classification system based upon research findings for the medication. Clearly studies on humans that show no fetal risk are ideal whereas studies on animals that show that the medication causes fetal abnormalities suggest that the use of that medication during pregnancy should be carefully considered

The FDA classification system is as follows:

A – Adequate studies on humans have shown no increased risk to the fetus
B – Animal studies showed no increased risk OR animal studies showed an increased risk but other human studies showed no risk
C – No adequate human studies exist. Animal studies show an increased risk or have not been done.
D – Human studies how an increased risk “but the drug can be used if the benefits outweigh the risk”
X – Definite evidence of fetal abnormality exists. Treatments with this rating should NOT be used during pregnancy.

The article discusses the use of most IC therapies and provides an extensive discussion of pros and cons.

Pentosan polysulfate (Elmiron) received the highest rating in the group with a “B.” (Please note that a clear connection between Elmiron® use and retinal disease (pigmentary maculopathy) has been established and we have no current data that explored the safety and effects of Elmiron® use on the eyesight of a fetus or young child being nursed. As a result, we suggest caution for any women considering the use of Elmiron® during their pregnancy or while nursing.)

Amitryptiline, hydroxyzine and DMSO received “C” ratings. Intravesical lidocaine (aka rescue instillations) were discussed in depth with the authors suggesting that the “safest choice would be to instilll non-alkalinized lidocaine” to avoid the issue of systemic absorption and placental transfer. Corticosteroids received a “D” rating if used in the first trimester and a “C”throughout the rest of the pregnancy. These main birth defect seen was cleft lip and/or palate.

The authors further noted that sacral nerve stimulators (aka Interstim) “should not be placed during pregnancy.” Patients with existing stimulators should be aware that Medtronic recommends that the device be turned off for the entire pregnancy “because the effects of sacral nerve stimulation on the fetus are completely unknown.”

Clearly, the most vulnerable time to the fetus is the first trimester. If you are considering pregnancy and are currently using any of the medications above, we strongly encourage you to purchase this article on-line or locate this article in a local medical library.

Erickson D. MD, Propert K. ScD, “Pregnancy and Interstitial Cystitis/Painful Bladder Syndrome” Urol Clin N. Amer 34 (2007) p. 61-69

Getting Support For Your Pregnancy

The ICN offers several support forums for patients who are considering pregnancy, currently pregnant and new mothers. We also offer support for couples struggling with infertility and women who would like to have children but haven’t been able to due to, for example, hysterectomy.

As you use our support forum, we want you to remember that every pregnancy is unique. Some patients improve dramatically during their pregnancy and their IC symptoms disappear. Other patients may have more intense symptoms. Our support forums will, obviously, attract patients who are struggling. So, please remember that for every story you read online about patients having a rough time, there are many others having a great time with their pregnancies.