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  • #16
    Hi guys. I am also pregnant and have IC. I am 13 weeks along today. My IC was actually diagnosed at the end of my first IVF cycle and I spent the last 2 years between that one and this one learning about IC and assembling a team of physicians who were all aware I would be attempting IVF again and that the goal was to control my IC in a way that was pregnancy safe.

    Needless to say in my research I got alot of bad news. Pretty much no bladder medication for frequency/urgency/cramping is safe. 80% of women with IC continue to flare while pregnant (20% get a blessed remission)..both state they have the worst flares of their life after delivery. One study even went into how roughly 75% of the women in it were forced to terminate their pregnancy due to the pain. When you are paying nearly $20,000 to get pregnant to even begin with...these do not sound like good odds. So I took my time and ensured that my doctors would work with me. If I found a doctor not understanding of my condition and only willing to say "oh you can handle it for 9 months" I walked right on out and went to the next one on my list. It took me a year but I have my OBGYN, my fertility specialist, my urologist, and my pain specialist all working together and with me to get me through pregnancy as safely for my baby as possible and as pain free for me as possible. It seems I am really lucky to have been able to get a full team willing to work with me. Maybe the secret is pre-planning and making the doctors fully aware of your intent to get pregnant up front, arm yourself to the teeth with your own research into medical journals and studies that have been done, and never-ever take "suck it up" as an answer from a professional who you are paying to help you. I mean, if you paid someone to come paint your living room and they walked in, looked over the walls and old paint before they said "You know...this color isn't bad...you can live with it." would you still pay them for painting the living room? I wouldn't!

    Now my team of doctors did encourage me to refrain from all medications the best I could through the entire first semester. But we put things in place to try to help me make it those 3 months. Namely a Caudal Nerve block 1 month before I started IVF (30 days is required for the steroid from it to wear off to be pregnancy safe). Through testing we found these nerve blocks work for 2-3 months for me. So I knew the last month of my first trimester I would likely be in pain. Which I am (ugh) but I see my pain doctor again Wednesday and we have plans to redo my caudal for relief...which should get me into my third trimester. I did get desperate about 2 weeks ago and went to my urologist about an emergency instillation (since those are considered completely safe for pregnancy) but he was afraid that the stress of catheterizing me would actually risk a spontaneous abortion so he encouraged me to do the best I could with it but also told me that if it got to bad to take my Tylenol 4 in the lowest possible amount I could and if that did not help, to come back for the instillation.

    I have been careful about my diet and have grit my teeth through the last week since seeing him. (It hurts but I am no where near as bad as I could be and I know it) My pain doctor and OB both say that Tylenol 4 is one of the "safer" narcotics. No narcotic is without risk, that is clear, but there are levels of risk. While the FDA hasn't done alot of testing to classify narcotics for pregnancy (because who would sign up to be a guinea pig with their baby!) there actually is a good amount of research out there on narcotics and pregnancy based completely on actual drug addicts. The most common issue in a baby born to a mother on narcotics is actually the baby being addicted to them. Like any addict, the child will have to undergo detox from the drug. This can be done before birth or after. It is considered "easier" on the baby to undergo detox while still in the womb, though this can be rough on the mother dealing with a very upset baby in utero, kicking her constantly. But it does sound better than the external alternative where the baby will be physically ill and in the hospital. The good news is, if you know ahead of time this is a problem, the hospital can assemble a team to help your child through the detox process. Since IC patients tend to actually be on controlled doses of these drugs, we tend to be taking alot less than an addict on the street may be doing.

    It really pains me that you guys have such horrible doctors that are not sympathetic to your plight. I hope you will be able to find help and relief like you deserve. As my pain doctor told me "You are not the first woman with a chronic pain condition to want to be a mother and you will not be the last." and my OB said "I see women all the time addicted to narcotics they get illegally and don't need. But you have a legitimate reason to need them and we will get you through this just like we gt them through it." Your doctor's need to realize these things too and treat you with the same dignity and respect that any other woman wishing to be the best mother she can be deserves. And if they won't...someone else will!

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    • #17
      Great post!

      Of all the posts I've read and written in 5 years, this is the best! You knocked it out of the park. So thorough. I would love to keep up with you. I hate this freaking disease that dictates our lives. I've been on disab since 2007 and I had taught school 13 yrs prior. It's definitely affected my quality of life. I just try to make the best of my low pain days. Keep fighting!
      Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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      • #18
        I am glad you liked it hottytoddy! I tend to be a bit over-wordy but I prefer very complete explanations for myself so I tend to give them to others.

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        • #19
          Jadia, I'm the same way! Very thorough. Excellent!
          I went for gender ultrasound today! IT'S A BOY!
          Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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          • #20
            Congratulations! We're going to try for a gender check at 15 weeks. So 1 more week to go.

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            • #21
              Not that I am pregnant...with three small girls I think I would have to check myself in somewhere if I got pregnant again.. One thing you may want to look into is that I went to a new uro/gyn today and she recently stopped being an OB. So, I am wondering if you could maybe find someone like that where you live that could look at things from the OB/GYN/URO sides??? Maybe call around to OB offices or URO offices. If you live in Nebraska...I know of one.

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              • #22
                Jadia, 15 wks is really too early to tell. I'm surprised they told you that. Hmm. Anyway, ultrasounds are fun to get except when they press on IC pain area! I have the greatest OB/ pelvic pain specialist ever! I feel blessed. He is mentioned a bit on here. That's how I located him
                Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                • #23
                  Around here they do them from 15 to 18 weeks using the 3D/4D ultrasound which is much clearer than the typical black (or green) and white 2D ones you see. At 15 weeks the chance of gender determination is about 50% accurate. This accuracy rises daily until at 16 weeks it's 99% accurate with this type of ultrasound.

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                  • #24
                    Go girl because they won't do my 3D or 4D until 28 weeks! Darn. Said face doesn't show enough distinct qualities yet.
                    Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                    • #25
                      Now that part is very much true! The baby is still skinny and some people say "alien looking" at the 15 weeks mark. The say the best images of the face are captured between weeks 28 and 32 since they baby has gained weight and is pretty much fully developed but still small enough to be in a good position for getting "unsquished" pictures. While they can still get pictures at 34 to 38 weeks the positioning and size of the baby gets harder to capture good pictures because of their lack of room or rotation. I am hoping to do the gender check right at week 16 (need an appointment still!) and then my OB does a 3D/4D at 20weeks and then I hope to get another around 30 weeks for the face pictures. There are lots of pictures on the internet that you can search through google to give you an idea of when the best time will be to capture the face shots you want to get. Simply search "3D Ultrasound + 15 weeks" or what ever week you wish to see and then view images.

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                      • #26
                        I set for 3D & 4D @ 28 wks. That sounds like good timing since it's cash up front!
                        Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                        • #27
                          You are so going to enjoy looking at the 3 and 4D ultrasound pics, you can even see hair on those tiny heads. Congrat Lauren on your baby boy have you picked out names yet? By the way I started see a doctor at the Women's specialty center (not the correct name) off of G'town road and wolf river across from the waffle house.
                          IC diagnosis 3 weeks ago.
                          Vesicare 10 mg once daily
                          IBS and Gerd-Zegerid
                          IC diet
                          Elmiron 100 mg three daily
                          Hydroxyzine 25 mg at night
                          Amitriptyline 10mg at night
                          Diovan 60/12.5 daily
                          Topral 50 mg daily
                          Zoloft 100 mg at night
                          Klonopin .5 twice daily

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                          • #28
                            That's it! Are you going to Dr Ling? There are two urogyns there too! Love it! Anyway, his name is William Noah...calling him Noah thank you!
                            Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                            • #29
                              Originally posted by hottytoddy93 View Post
                              That's it! Are you going to Dr Ling? There are two urogyns there too! Love it! Anyway, his name is William Noah...calling him Noah thank you!

                              What a beautiful name......I'm seeing Dr. Summitt not sure how I feel yet, I like a dr to sit down while he's talking too me and Dr. Summitt stood the whole time like he had some where better to be. I'll give it some time.
                              IC diagnosis 3 weeks ago.
                              Vesicare 10 mg once daily
                              IBS and Gerd-Zegerid
                              IC diet
                              Elmiron 100 mg three daily
                              Hydroxyzine 25 mg at night
                              Amitriptyline 10mg at night
                              Diovan 60/12.5 daily
                              Topral 50 mg daily
                              Zoloft 100 mg at night
                              Klonopin .5 twice daily

                              Comment


                              • #30
                                He is supposed to be one of the best so let me know about treatment bc lots of drs have no bedside manner! Ha
                                Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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