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My hubby and I are going to try a round of IUI layer this month in hopes that we can get pregnant. I'll be on fertility drugs for a month. Are there IC patients here who have gone through IUI or IVF? How did your body and bladder respond to the drugs? At what point did you wean yourself off your IC meds, while taking infertility drugs or after the IUI/IVF procedure took place?
I spent almost 2 years preparing myself for pregnancy with IC. The big thing is to remember it is different for everyone and you may be one of the lucky few who goes into complete remission or you may go into a 9 month flare. Both are possibilities. My tactic was to hope for the best but be prepared for the worst.
What I honestly suggest you do before you even start your fertility treatments is make sure that you have a pregnancy safe way to deal with your IC pain and a dedicated group of doctors to get you through pregnancy with IC. So before you even go in to start your treatments you should be off any and all unsafe pregnancy medications and you should try to replace them with safe treatments and live that way for a month or two just to make sure you can cope. Once you get pregnant and have invested the amount of money it takes for these, you do not want to end up miscarrying from stress from the pain or at worse needing to terminate your pregnancy. One study I read that convinced me to take my time and make sure I was well prepared followed 10 women with severe IC and only 3 made it the full 9 month terms...terrifying. But in my own experience, I think most of them just did not prepare before hand. You have the magnificent opportunity to do that given you are not trying to conceive the "natural" way and can actually plan your timing! I have a post in this thread that you might find useful. I have another one some where about my process but I can't find it at the moment.
Just take your time with the planning and make sure you have several Pregnancy safe treatment options that work for you before you take the leap. It will make you feel much more comfortable! Best wishes for success and feel free to ask me anything you like. I will be glad to answer what I have experienced with the process.
I wish there was more time for me to plan my pregnancy. My husband and I are in our mid-40's and we only decided to try infertility treatments a couple of months ago. We're both unemployed and our insurance for this treatment ends in November when I turn 45. So we probably have 1 shot at this. I talked to my urologist a year ago about a pregnancy plan. He has many pregnant IC patients and he has kept me 80% pain free since 1998. His plan is to do Elmiron instillations. This is, in his opinion, the safest treatment for my symptoms and the baby if I have the luck to conceive. The odds of a pregnancy are stacked high against me even with fertility drugs. My Uro is a great doctor and I'm sure he will have an agressive Plan B and Plan C for my pain management. When I see him next week we'll discuss it in detail. I also have a psychiatrist who is working with my RE on how to keep me on even keel mentally if I get pregnant on how to control my anxiety and mood swings.
I've braced myself for the worst case scenario: horrendous pain during fertility treatments and and pregnancy. When I was first diagnosed in 1998 and the pain was agonizing, I somehow endured and survived it for 4 months until Elmiron came on the market and began to work its magic.
I want a baby more that anything else and, like you, are hoping for the best and preparing for the worst. I have no illusions that my bladder pain could get very bad, perhaps worse than ever. But I have to at least give this experience a try.
I know the feeling about the difficulties. I have had 2 miscarriages from ectopic pregnancies, losing one tube in the process from the full rupture/emergency surgery, then failed IVF attempt then the onset of my IC. This was my second round of IVF though I did take a 2 year break to get diagnosed, stabilized, and prepared for the retry.
I wish I could comment on how the hormone treatments affected my IC this time but part of my plan was a caudal nerve block roughly 30 days prior to starting treatment. 30 days was required to give the steroids time to get out of my body from the nerve block because they are very very bad in the first trimester. As a result I had no discomfort what so ever through the 30 day IVF cycle and even up until 3 weeks from the end of my first trimester. At that point my nerve block was fading fast and my symptoms were coming back full fledged. I got desperate to the point of going to my Uro for an emergency instillation. We had never attempted these before because I have alot of issues in the Urethra as far as symptoms of my IC...a catheter for me is about as pleasant as trying to ram a hot poker right on up there. In fact it was in my IVF orders that no urinary catheters were permitted during my treatment (one is used to fill the bladder typically when they place the embryo back in the Uterous and then another to drain it once it is in place.) I compensated by drinking like a fish before hand to fill my bladder as much as I could stand before hand and then meditating for the required 20 minutes on my back after until I could run to the bathroom. It seems to have worked.
Now, what I can comment on as to the difficulties from the hormones is: before my first IVF, I did not have IC but after it; I did. I in no way believe that the IVF "gave me" IC...but my doctor's believe that the elevated level of my hormones through the process could have been what contributed to the full flaring and thus onset of my latent symptoms. So from that information I would tell you, if you typically experience a worsening of your symptoms around the time you ovulate and then again during your period, it's an educated assumption that you will likely experience the same increase in symptoms during your treatment given they are sort of "boosting" the cycle hormones.
My doctor opted to not do instillations on me given my problems with catheters (he worries about the stress it will induce on me given I also have anxiety issues) but from what my Uro, Gyno, and Pain specialist all say they are a very safe treatment during pregnancy, so if they work for you that is at least one great option you have available that was off my table for options.
Now during my pregnancy in the first trimester I did see a return of my IC symptoms when my nerve block began running out. My frequency/urgency was unbearable as I went through a 7 week period where I could not sleep longer than 45 minutes at a time without getting up and running to the bathroom (that was when I thought "maybe an instill is worth it!"). I normally take enablex to help with my frequency urgency as even that bleeds through my nerve block from time to time...with the pregnancy though they removed that from my list of medications. I got my caudal redone just after getting through my first trimester (I think I was 14 weeks..it may have been 13.5) and that has helped slow the frequency down a bit to allow for better rest. I think I can go about 2-3 hours at a time while sleeping. Now if the baby would just let me eat...but he has his own plans on that apparently!
My fall back is Tylenol 3 and Tylenol 4 when/if the pain gets to bad. (The difference between these medications is the dose of codeine they contain for those who aren't sure. Tylenol 3 is 30mg and Tylenol 4 is 60mg) I will be 18 weeks this Tuesday and I have not yet gotten to the point of taking any of my pain killers. I am so thankful for that! My doctors believe that while these aren't absolutely 100% safe and rated for pregnancy...they are the least dangerous of the options available. They sited that the main risk will be the baby becoming addicted/dependent upon them. Certainly unpleasant and requires special care, but the detox/breaking addiction process can be done while still in the womb and special care providers would need to be on stand by for the baby at birth as a safety precaution. You may want to speak to your team about those emergency moments, what they suggest you take if it does get to that point. I know for me, just knowing that I -can- take my pain killers helps alleviate a lot of anxiety that I had about the "oh god, what if it gets really bad". And alleviating anxiety in and of itself has made the process easier for me.
Fertility treatment can be an emotional roller coaster. If you ever need someone to talk to, feel free to FPM me!
I'm lucky that my IC symptoms don't worsen during PMS and my period. So maybe the fertility drugs won't wreak havoc on my bladder. Only time will tell.
Also, I've had Elmiron instillations before. I took a Valium 2 hours before the treatment and that made the catheter easier to tolerate. The worst part of it was the smell of rotten eggs that came from my urethra after the treatment -- yuck!
Thanks alot for all the information you shared with me. I'll keep you posted on how things pan out in the next few weeks. Please send good vibes my way.
and can actually plan your timing! I have a post in this thread that you might find useful. I have another one some where about my process but I can't find it at the moment. 
I am so thankful for that! My doctors believe that while these aren't absolutely 100% safe and rated for pregnancy...they are the least dangerous of the options available. They sited that the main risk will be the baby becoming addicted/dependent upon them. Certainly unpleasant and requires special care, but the detox/breaking addiction process can be done while still in the womb and special care providers would need to be on stand by for the baby at birth as a safety precaution. You may want to speak to your team about those emergency moments, what they suggest you take if it does get to that point. I know for me, just knowing that I -can- take my pain killers helps alleviate a lot of anxiety that I had about the "oh god, what if it gets really bad". And alleviating anxiety in and of itself has made the process easier for me.
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