Congratulations! You're either considering having a child or you're already pregnant. If you're wondering how IC will impact your pregnancy, take heart. IC patients have successful pregnancies and children every month. 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!
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 The one unpublished study available was conducted by the Interstitial Cystitis Association in 1989.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.
Dr. Robert Moldwin, in the IC Survival Guide, 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.
(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. - Feb 2009)
If you are considering pregnancy and you have interstitial cystitis, these are some of the issues that you may face. Write down your questions and concerns and discuss them with your partner and medical care providers. Explore the resources available to you: talking with friends and family, reading books, surfing websites, asking your doctors questions, etc.
Step 1: Making the decision of a lifetime & Keeping perspective: Pregnancy is for nine months. Parenting is a lifetime commitment.
Here are some of the questions that I explored with my husband. I can't answer these for you.... and it's important that you think about it honestly and openly. They can be tough questions. So, write down yours and and then sit down with your husband and talk about them. Don't rush!
- Do we want to be parents?
- Do we want children?
- Are we willing to change our lifestyle?
- Can we afford children?
- Will we make good parents?
- Do we have family, friends or neighbors who can support us?
- Will both parents work? Who will be the primary care giver? Who will be the primary financial supporter?
- Can we afford childcare?
- What does our health insurance cover?
Step 2: Assessing The Impact of IC
Here are some of the IC questions that I was worried about and took the time to ask my doctors and other patients:
A. Which medications would I have to stop? How far in advance?
See section below
B. If sex is painful, how will I handle the increased sexual activity?
Women with IC may experience increased symptoms and/or what feels like an IC flare, usually 12-48 hours after intercourse due, we believe, to the gentle yet persistent pelvic floor spasms which occur for several hours after orgasm. Luckily, we have many self-help strategies that can reduce those symptoms which you can read in the ICN Intimacy and Sexuality Resource Center
C. Will my pregnancy be considered high risk because of IC?
Every patient is different. Your personal medical history, current symptoms and/or medications you may be using will be assessed. Ultimately, only your doctor can make this determination. Ask them and then talk about the pros and cons?? Will it require bedrest?? Will medication be an issue?? What does "high risk" actually mean??
D. What will childbirth be like for me? Is vaginal or cesarean preferable with IC?
IC patients have had both. Again, it depends upon your physiology and pregnancy conditions. You can talk with other patients about the pros and cons in our ICN support forum. (See support links below).
E. Will my OB/GYN really understand all aspects of my IC?
You'll have to sit down and have a thorough discussion about this. The use of prenatal vitamins is a perfect opportunity to test the waters. Some patients can easily tolerate vitamins while others have more trouble. Don't expect your OBGYN to understand the daily grind of life with IC but they should be able to talk about various treatments and medical care issues. For example, it may be very reasonable for you to ask for some physical therapy post delivery to help any pelvic floor dysfunction that may have occurred or been exacerbated by labor and delivery.
F. How will my Urologist be involved in my pregnancy?
Good question. Ask him or her!
G. Do I want to breastfeed?
This is a very personal decision based not only on your personal preferences but also any medication you may take that could be transferred to your child through breast milk.
H. Can I be a good mom with IC?
IC doesn't change your ability to love but, ultimately, you do have to take some time to think about your personal situation. Talk with a trusted friend, your parent, a counselor or your doctor about any questions or concerns that you may have.
I. Can I physically and emotionally handle caring for an infant (then toddler, then child) with IC?
Your doctor should be able to give you a good assessment on healthy you are and if you can physically support a pregnancy. It's fairly normal for your emotions to become quite confused during a pregnancy. Prior to pregnancy and during a pregnancy, this is a great time to find a counselor or therapist that you can work with to help you sort through any emotional issues you may have. There's no shame in seeking help. In fact, a good mother will role model to their child that it's perfectly fine to ask for help from a professional rather than suffer in silence at home alone.
J. As my child ages, how will I explain about my illness?
The ICN book My Mom Has IC: A Painful Bladder Story can be quite helpful. See info below.
K. Will we need to hire help and can we afford it?
This is worth a heart to heart discussion with your partner and family. Can you do it all?? Can family members or friends help?? Would hiring someone ease the burden??
L. Will I be able to find the time to continue ongoing treatments (bladder installations, physical therapy, etc)?
The worst thing you could do is ignore, or sacrifice, your own health. Your family needs you to be strong and healthy. You MUST find time to care for yourself, including visiting your doctor, trying treatments and/or doing physical therapy.
M. How will I care for my child when my IC is flaring?
Ideally, you can prevent flares from occuring.. but, if not, having a backup plan is essential. Who can help with the kids?? Who can take you to the doctor if you need to go??? Try to have a safety net of options so that if your IC flares, you can get the care you need while still caring for your child.
- My Mom Has IC: A Painful Bladder Story by Jill Osborne MA, IC Network
- Overcoming Bladder Disorders: Compassionate, Authoritative Medical and Self-Help Solutions for Incontinence, Cystitis, Interstitial Cystitis by Rebecca Chalker, Chapter 9: Staying Sexual
- The Interstitial Cystitis Survival Guide, Chapter 9: Sex & IC, IC & Pregnancy pages 77-80
- Living Well With a Hidden Disability: Transcending Doubt and Shame and Reclaiming Your Life by Stacy Taylor, Robert Epstein, Chapter 4: Love and Sex, Chapter 5: Parenting
Step 3: Planning for Pregnancy
When planning your pregnancy, it makes sense to try conceive when your IC symptoms are in remission or under control. Diet, of course, will play a role. Even prenatal vitamins might be a concern because of the high levels of Vitamin B and C, commonly known to irritate the IC bladder.
Make appointments with every doctor or medical care provider necessary. This could include your OB/GYN, Urologist, Primary Care Doctor, Pain Specialist, Psychiatrist, etc. This is also a good time to get physicals, annual GYN exams, dental cleanings and x-rays, etc.
Go to these appointments prepared. Take a list of all your medications and treatments, how often you take them and for what reasons. Ask your doctors which meds are safe during pregnancy and which are not. If there are meds that you must stop, find out when you must stop them (prior to conceiving, once you confirm pregnancy, etc). You may also want to ask which meds are safe during breastfeeding. Be advised that you may get different opinions from each doctor.
You and your partner can weigh the pros and cons of each medication. Then you can choose which medications to stop and when.
Ask your doctors what IC treatments are acceptable to use during pregnancy. This information can be especially helpful if your IC flares during pregnancy.
Ask your OB/GYN and Urologist about prenatal vitamins. Folic Acid, Calcium and Iron are the most important nutrients that may need to be supplemented. It is advisable to start taking Folic Acid before getting pregnant.
Many IC patients have difficulty taking vitamins. One major source of problems is Vitamin C which can be very acidic and irritating to the bladder. Look for vitamins that have less acidic forms of Vitamin C (like Ester-C). Another irritant in vitamins can be the dyes and additives. Look for more natural alternatives. Your OB/GYN may give you several samples of prenatal vitamins.
Step 4: Learning when and how to get pregnant
Do you know when to time sex? Do you really know when your body ovulates? Are your cycles always the standard 28 days long? Do you always ovulate on day 14? Are you (or were you) taking meds that was delaying or preventing ovulation? When do you have to stop the pill before TTC (trying to conceive)?
Recommended Reading: Taking Charge of Your Fertility: The Definitive Guide to Natural Birth Control, Pregnancy Achievement, and Reproductive Health (Revised Edition) by Toni Weschler
"As the book explains, by using simple fertility signs including peaks in morning body temperature and changes in cervical position and cervical mucus, it's possible to determine when ovulation is taking place. Fertility awareness is therefore useful for not only couples who are trying to conceive, but for those who are aiming to avoid pregnancy without the use of chemical contraceptives."
Step 5: Baby Making
Okay let's face it, if you have IC, sex isn't always easy. In fact, sometimes it's downright painful. So now you want to get pregnant and that means you have to have a lot more sex. Well, atleast you have to have a lot more sex at a certain time of the month. Here are a few tips that you may find helpful.
PT isn't right for everyone, but if you experience pain with sex it may be worth trying. Ask your Urologist or OB/GYN for a referral. It's often helpful to have an object to contract against. Your physical therapist can supply you with a vaginal dilator, a small plastic rod that you can insert. Your therapist can also give you a "Mr. Frosty", a condom filled with ultrasound jelly that you can discreetly store in my freezer. Or you can make one by filling a condom with KY jelly. It's used after sex to cool down the vaginal tissues.
* Foreplay. It's necessary to loosen up and lubricate those pelvic muscles and vaginal tissues. Plus it's fun!
* Lubrication. Some lubricants have been proven to kill sperm, including KY Jelly. Granted, you wouldn't want to rely on them as a contraceptive, but they could hinder your ability to conceive. There is some debate about whether or not Astroglide is sperm friendly. There is a product on the market called Pre-Seed that is recommended for TTC, but there are mixed reviews and it is quite pricey and difficult to find.
Egg white is recommended because it is most like our natural cervical fluid that's present just before ovulation. Yes, plain old egg white, although you might want to look for pasteurized eggs which are available in most grocery stores these days. Simply separate the egg and discard the yolk. It helps to allow it to warm up to room temperature. You can use a small syringe (no needle) to insert it in the vagina. Many women, who struggle with fertility or simply don't produce enough quality cervical fluid, highly recommend using egg white. And let's face it, lube is usually necessary with IC.
* Positions. Certainly some positions allow deeper penetration and more probability of the sperm reaching the egg. For example, missionary position is considered best and woman-on-top is often considered worst. However you must weigh this against which positions are most comfortable for you. Experiment and have fun!
* Void as soon as possible. You may want to consider waiting 10-20 minutes to allow the sperm time to travel up, but there is debate whether or not that's necessary.
* If you are prone to UTI's, ask your Doctor about taking a preventative antibiotic after sex. One product that might help is called Very Private Body Wash.
* Both of you should consider showering before and after having sex. At the very least, have your partner wash his hands before sex. A removable showerhead is most helpful for cleaning up afterwards and preventing the spread of bacteria.
* When to test? Some home pregnancy tests claim you can test up to 5 days before your expected period. But remember that they are NOT 100% accurate that early. Try not to stress and remember that you can always try again next month (that's half the fun after all!)
Medication Use During Pregnancy
CAUTION!! THIS IS IMPORTANT!!! READ CAREFULLY!!!
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." 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
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.
The most important book for a newly diagnosed patient, the IC Survival Guide was written by one of the most respected clinicians in the USA, Robert Moldwin MD. It covers diagnosis, treatments and pain care. Most of all, it will help you credibility test proposed treatments with your physician. It's a must read! ($13.99) Buy Now!
My Mom Has Interstitial Cystitis: A Painful Bladder Story
A note from ICN Founder Jill Osborne - One of the best parts of my job is being able to encourage and help IC patients who want to start a family. I want you to know that 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 because you are compassionate, kind, caring and would never turn away from someone in pain. But it does take work, planning, time and patience. And, ultimately, you do have to assess your IC and work closely with your care providers. I hope that you join the hundreds if not thousands of IC patients who have had successful and joyful families! Be strong! You can do this.