want a baby so bad but so much pain

[Square Mom]

Before the onset of my IC symptoms 1 1/2 years ago I was trying to get pregnant. Since then, I have tried everything to get better ... bladder instillations, Elmiron, biofeedback, cystoscopy with hydrodistention, a myriad of different herbs. These have all failed. The only thing that works to keep my pain under control is staying on the IC diet and taking a pain medicine, tramadol, 50 mg, 4 times a day. Without the pain pill (or the diet, for that matter), the pain is so bad that I cannot sleep or function, and would probably kill myself long before completing a 9 month pregnancy.

I am so frustrated, because I want a child so badly! The only thing preventing me from having one is the tramadol, but as I said, the pain without it is absolutely unbearable. I would rather have my bladder removed and have a child than keep my bladder and have no child, but no one has offered to perform a cystectomy since my pain is controllable with diet and medication.

I keep waiting for remission or a decrease in the pain, but it feels like I have waited forever, and I'm so sad at the thought of never having a second child.

Can anyone think of anything else I can do?

[ihurttoo]

I do hope that you will talk to your ob/gyn about these concerns. I had nausea, toxemia and terrible back pain throughout my pregancy, and I was put on Mepergan-Fortis, starting at the 2nd trimester. It is a combo of Phenegrin and Demoral. It is a wonder drug. It truly helped with the pain. I was able to take it all the way up until I delivered. I know that they now have pain meds that can be taken safely in the 1st trimester as well. You really should talk to your dr and tell him your fears. I guarentee you that you will feel instantly relieved when you learn of all the options that are now available. Dont wait thinking the pain will get better, because it may not. You just need to make sure that he will treat it when you become pregnant. I know there are drs that will, b/c as I said, mine did. I wish you the best of luck! Hugs, Amy

[rachelm]

I too had many concerns when we decided to TTC. My symptoms were so out of control and I had tried everything but my urgency, pain and retention along with need for frequency (self-cathing much of the time) didn't get better. I eventually got the interstim and along with diet, elmiron, attarax and occassional muscle relaxers I was able to control my symptoms. Needless to say, we talked extensively about our treatment options for the TTC process as well as after I got preg. My dr. suggested that I turn off the interstim and try not to take anything once I got the positive preg. test until my second trimester. However, if needed I was told I could take Lortab which is much stronger than the tramdol and do heparine/marcaine bladder instils.

While TTC after ovulation several times I had small flares that were quickly helped with bladder instils. I got preg. but miscarried in Dec. but my IC was controlled. I'm 5 1/2 weeks preg. again now and doing o.k. with just a little burning. So far this time I've not gotten any bladder instils but I know they are there if I need them.

I agree with the prev. post. Definitely talk to your uro and gyn about your treatment options because it is possible to control the IC. In fact my dr. thinks the hormone shift has helped my symptoms and encouraged me to get pregnant before my spring flare season because I might go into remission. It's early to tell yet but so far I'm functioning well.

I'm also lucky that I have a urogyno that undertands the obgyn aspect as well as the IC part.

Keep us posted on what you all decide.

Rachel

[Cheries]

I WENT INTO REMISSION IN PREGNANCY!! IT WAS WONDERFUL!! I had a few flares at the onset which were controlled with demoral. You can take pain meds during pregnancy, just check it out with your doctor. Don't give up on your dream due to fear. It was so scary for me also, but as soon as I educated myself about my options I felt a lot less fear that there was something out there I could take if I needed it. I only had to take it twice and had a great pregnancy.

[Square Mom]

Thank you so much for offering me hope. I have made an appointment with my OB-GYN for May 2nd. Just knowing there are other options frees me from this dispair. Thanks again.

[Kara29]

If you stop on into the Infertility Board http://www.ic-network.com/forum/forumdisplay.php?f=154 you can view all of the posts I wrote regarding wanting a baby and having trouble. I still want one someday, even though I won't be the one to carry it. I hear you 100%

Unfortunately,

I did have to have my bladder taken out as a LAST RESORT! ONLY AS A LAST RESORT!

Sending you healing thoughts and prayers!

HUGS,

Kara

[dminton]

I went into remission only a couple of months before pregnancy, was fine all throughout, and stayed in remission for 8 years after that. My IC is very much tied to hormones, I know that much!

[jasminedee]

This is my experience with IC, UTIs and having a baby. Probably not directly relevant but hope it helps.

After years of utis and a diagnosis of IC, I started to take Elmiron and it worked. But when I started undergoing infertility treatments, I decided to stop as the Urologist said that there was not enough data regardin Elmiron and pregnancy. I kept waiting for the pain to come back but it didn't for many years. My daugther is now 7 and over the last few months some of the symptoms have returned.

I have read some studies indicating that pregnancy and lactation seems to send the IC into remission. Hope this helps.

[Meemer]

Hi Square Mom:

Like you, I am now venturing into the uncharted territory of getting pregnant with IC. My IC has been uncontrollable for nearly four years and, in 2002, I had to quit my job and my future. That also included putting off having children due to the severe pain upon intercourse, severe pain in general and all the drugs I was using to get things under control. It's been one heck of a rollercoaster.

However, I've finally found some hope with prednisone, a medication most physicians are very reluctant to use. I stumbled upon it through a problem I developed with codeine and I had to rush to the emergency room to get my breathing difficulties addressed. The hospital used prednisone and I couldn't believe how wonderful my bladder felt. Ironically, barely a year later, some Canadian researchers released a five years study using prednisone on ulcerative IC patients and they found it 88% effective in relieving the pain, among other things. I don't have ulcerative IC, but it has been my magic pill, albeit a double edged sword when it comes to long-term side effects. I am very aware of all the risk factors in using this drug and my doctors are also very aware. However, my only other option is bladder removal and I just can't get my head around that just yet.

I'm not advocating pred use here for IC, because the risk to benefit is huge! What I want to highlight is the fact that I am in the same boat as you with having to use very powerful drugs to control my symptoms and scared to death it might harm the fetus. However, after talking to my doctors last week, including an Endocrinologist, Gyn, Neurologist and soon, a fertility specialist (I'm 41), I've been assured that I can use pred (if needed) during pregnancy. My endocrinologist is double checking, but the only thing he's concerned about is the baby's adrenals...they will effectively be shut down if I've used pred during the last trimester and the baby will need to have steroids administered upon birth and then slowly weaned off. Still, there are so many risks for pred and pregnancy, I am leaving no stone unturned!!

Although many ICers wanting to get pregnant who are on drugs to treat IC are extremely concerned with the effects on the fetus, I don't believe we should "throw the baby out with the bath water" so-to-speak when it comes to considering having children. It's the one thing that, if I don't at least try, I will deeply regret. Finding the right doctor who is versed in both pregnancy and the drugs we need to take is key. Many docs run from any suggestion of a patient wanting to get pregnant with this chronic disease and continuing to use the drugs, but I understand their very valid reservations! Others, meanwhile, think "Oh, you'll go into remission, so just hurry up and get pregnant." The truth is, no physician knows for sure if an ICer will definitely go into remission. I know ICers from both camps, some do and some don't go into remission.

I think it takes a doctor or a team of doctors from different areas of medicine who are willing to go the extra mile in getting really educated about IC and the drugs we take (which are safe/which are not), along with a strong commitment to seek out all options with you. I am lucky to have the docs I have!! They are very, very knowledgeable and supportive in finding the answers I need and that's the kind of help you will need as well.

I am just beginning the process, going through the necessary tests for someone at 41, starting with blood work during my next period to measure my fertility. I will then see a specialist recommended by my totally Awesome IC Gyn and my husband will also get his fertility tested. Since the pain of intercourse is too much, I have the option of artificial insemination. I am very hesitant of in vitro fertilization, since I am extremely sensitive to estrogen. I cannot even take birth control pills and have always had problems in my attempts to take them, as they make me EXTREMELY depressed and my periods can be very, very heavy. Any messing with my hormones is very troublesome, but I'm just going to cross my fingers, step out on faith and continue down this path wherever it takes me.

I wish you the best of luck! I'm with you all the way.>Meemer

[green_the_fish]

Hi, Square Mom. I'm too young to have any personal experience in this area, but I have read research on the subject.

Tramadol has been classified by the FDA as a Category C medication. There are 5 categories given to meds by the FDA, in relation to pregnancy. Here is a summary:

Category A

Controlled studies in women fail to demonstrate a risk to the fetus in the first trimester (and there is no evidence of a risk in later trimesters), and the possibility of fetal harm appears remote.

Category B

Either animal-reproduction studies have not demonstrated a fetal risk but there are no controlled studies in pregnant women, or animal-reproduction studies have shown an adverse effect (other than a decrease in fertility) that was not confirmed in controlled studies in women in the first trimester (and there is no evidence of a risk in later trimesters).

Category C

Either studies in animals have revealed adverse effects on the fetus (teratogenic or embryocidal or other) and there are no controlled studies in women, or studies in women and animals are not available. Drugs should be given only if the potential benefit justifies the potential risk to the fetus.

Category D

There is positive evidence of human fetal risk, but the benefits from use in pregnant women may be acceptable despite the risk (e.g., if the drug is needed in a life-threatening situation or for a serious disease for which safer drugs cannot be used or are ineffective).

Category X

Studies in animals or human beings have demonstrated fetal abnormalities, or there is evidence of fetal risk based on human experience or both, and the risk of the use of the drug in pregnant women clearly outweighs any possible benefit. The drug is contraindicated in women who are or may become pregnant.

Unfortunetely, many meds used to treat IC are also in Category C. Some examples of IC meds in Class C are: Hydroxyzine, Detrol LA, and DMSO.

I haven't read of any IC meds that in Class A.

However, I have read about a few that are in Category B. These are Urispas (Flavoxate) and Ditropan (Oxybutynin). Tylenol is also in this Category.

I think I remember reading that Elavil is in Category D.

Cytotec is firmly in Category X.

Anyway, have you tried Urispas or Ditropan? From what I understand, these are safer options than Tramadol. Although they are not pain meds, they might be able to help you.

The ladies here are right about pain meds, though, there are actually some strong pain meds that are considered relatively safe. I'm not totally sure, but I think morphine is actually in Category B (!) when taken in moderate doses after the first trimester.
You could also try stuff like physical therapy or accupunture. If you have a retention problem, you could learn to self-cath.

Well, that's what I read about while doing research.
I don't have any medical training or anything