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  • Diagnosed @ 16 wks pregnant

    Hi everyone,
    I just found out I had IC when my symptoms developed out of the blue @ 16 weeks. I am now 19 weeks and have been reading this board like crazy. Just one quick question: I saw that alot of you agree that once you are done being pregnant, your IC symptoms will go back to what is "normal for you". So, would you think that after I deliver, my IC will be barely noticeable, like before I even knew I "really" had a problem?
    I know you don't have a magic 8 ball, but man it would be nice to know that I have hope. It came on like lighting..very strong.

    Thank you in advance & congrats to all the mommies!
    Kelly

  • #2
    From what I understood, many people go into remission of IC during pregnancy. But not everybody. My guess is that your IC isn't going to get any worse than it is. Hopefully it will just get better. You may be sensitive to some of the pregnancy hormones. I know I'm super sensitive to progesterone, which increases a few days before my period, so my symptoms are the worst then. The good thing is after you give birth and are done breast feeding you can start on a lot of these medicines that will probably help you. Some may even be safe during pregnancy, but you would have to talk to your doc about that. I hope you feel better soon. It must be hard to be pregnant and have to deal with IC when you want to focus on other things. Hope you feel better soon!
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

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    Comment


    • #3
      This is just my story and what happened with me, it may not be true for you or others, I just want to say that before someone sends me a stupid email saying I need to keep my mouth shut But Anyway...

      For me my symptoms didn't even come on until after I delivered my second baby girl, I didn't know what was wrong and had gone back to the dr SEVERAL times and finally got a second opinion when the dr said he wanted to do surgery to remove some nerve...I had a biopsy done and the uro.dr told my husband it was one of the worst cases he'd ever seen and he didn't how I had gone so long w/out knowing it.

      I have never gotten better since, well I mean I have never felt like I used to before that pregnancy anyway(pain-free as it were). I consider myself in remission but never cured. Anyway, I always had the IBS and monthly female issues really bad before that, and I guess they go along with the IC.

      Anyway, I got on elmiron after that and stayed on it for awhile and it worked (after a few months of pain), but I really stuck to the IC diet and started eating a lot healthier too. When we decided to have our 3rd baby I quit all drugs, the bad side effect for me from elmiron was the migraines, so I was more than happy to quit it all. I did a full body detox (WITH CAUTION, I don't recommend it for just anyone) to rid my body of the drugs (I had read that infertility is a side effect of elmiron I dunno if its true or not but I wasn't getting pregnant until after the detox so whos knows). After I was pregnant I had some flares off and on, towards the middle and end I was in remission but the closer it got to birth-time the worse it got. That was when I tried herbs, I was scared to go back on elmiron while pregnant, I know others do it but I did not want to. I started taking marshmallow root which is safe when pregnant and nursing, and it helped tremendously! Now my baby is almost 7 months old, and I have not had a flare since she was almost a month old. I can tell when I eat certain things it will bother me, but after going to the bathroom a time or two the pain is gone. Mostly we eat healthy and organic so I don't have to worry about flares.

      My pain did not get better after delivery, it got worse. Sorry, thats just me, but I have experienced so much relief with natural things like herbs and vitamins and minerals, that we have become very big on this lifestyle now. My husband sees the difference, and has noticed the difference in him w/ healthy eating and trying herbs for his problems too.

      Again I am saying this is just me and my experience, but I am glad of the IC because I NEVER would have been one to believe in herbs and stuff had it not been for the IC. I feel like it has gotten a lot better over the years now too, I can eat stuff I was never able eat before (like peppers etc..)but I still am careful about it, if I am unsure of how my bladder will react, I only try a little bit and I can tell almost immediately. I know it is hard to get adjusted to the IC diet, but as long as foods are organic it really is not too confined as far as what you can have. And as far as drinks go, I have found(this is me now) the SOBE life water is fine, but you have to check out the herbs in it and if they are safe for pregnancy or not, kellymom.com has a list of whats safe and whats not. I also took probiotics while pregnant and I found them to be a GREAT help when I was in a flare. I took 2 a day and when things were really bad 4 a day...but again that is just me, and a friend of mine who also has IC and was pregnant the same time as me found it to help her. Either way whatever you do make sure you do lots and lots of research, talk to healthfood specialists who have degrees in knowing the herbs and vitamins who are familiar w/ IC, and also consult drs who are open to safe ways of helping when you are pregnant, ones who do not want to prescribe pain meds and all kinds of other junk that may or may not affect the precious gift inside you. Good Luck and I hope you get better soon. Stick to the the IC diet and drink lots of water and your flares should at least calm down I have found a lot of women do go awhile when pregnant w/out flares so maybe it won't last much longer.
      Mrs. Ridings


      I was on...
      Loestrin 24(to prevent period induced flares)
      Elmiron since Feb.'07 for a year and half
      Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
      Tried Prevacid didn't work.
      Tried Axert for migraines didn't work.
      Tried Frova for migraines made worse.
      Atarax Feb.'07-Feb'08
      Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.


      Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!

      Find the good in all things and then
      anticipate the good so that you may enjoy it.


      (KJV)Psalms 37:
      3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
      4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
      5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.

      Comment


      • #4
        As some others have stated, everyone is different but I can tell you about my experience.

        I was DX with IC in October 2005. My symptoms were awful and I did good to make it through the day. When I got pregnant with my first daughter in June of 2006 my symptoms disappeared. I didn't have a single flare up while I was pregnant but right after delivery I had one. I got pregnant again when my daughter was 3 months old and the symptoms went away once again. Shortly after she was born my symptoms returned yet again and have only been getting worse since then. My flares don't come very often, but I get monthly UTI's and they cause flares so it's kind of a never ending cycle. Hopefully since your symptoms are just now noticeable since becoming pregnant you won't notice them after you deliver. Good luck and congrats on your little one!
        Mommy to Mahayla 3-21-07 and Dalilah 4-7-08
        Wife to Casey 2-11-2006
        Diagnosed w/ IC in 2005
        Currently taking:
        Elvail 25mg at night as needed
        (Home) Elmiron/Bicarb/Lidocaine Instills up to twice a day as needed
        Hydrocodone as needed for pain (from GP when in flares)

        Have not been to uro in over a year and have had to stop all meds because of the expense

        Comment


        • #5
          Pregnant and just diagnosed

          Hi 402 Wife,

          I am in the same boat as you. I am 19 weeks pregnant and was only just diagnosed with IC. The pain is excruciating and now I feel I have to pee all the time. There is nothing I can take while pregnant and some days I wonder how I'll possibly survive till my due date. Like you I hope and pray that after I deliver that my symptoms will disappear. In the meantime if I find anything that helps that I'm allowed to take while pregnant, I will post it on here and hope you will do the same!

          I wonder how many women develop IC while pregnant that have never experienced it before and how closely it is related to hormones?

          Comment


          • #6
            Mrsaridings and Mayliesmommie, you both feel that your symptoms deteriorated after having your children? I would really like to have a third child but my family thinks I'm nuts. My urologist and my OB both said that often women feel better during pregnancy and it is highly unlikely my symptoms will get worse after having the baby. However, are there any real studies proving this?

            My symptoms started after I gave birth to my 2nd and got much worse after I stopped breastfeeding when he was 4 months old. I have 2 beautiful children and that's why my family wonders why I would risk being even more unhealthy to have another baby when at least now I'm able to function relatively well most of the time (praise God). It would be absolutely horrible if I had that third child and then was practically useless to all of them because of my urethral syndrome.

            Thanks.

            Comment


            • #7
              Hi,
              I am unsure about the studies, but I do know w/ my third baby, the flares came and went a lot. I credit the feeling better not to having her though, I was much worse after the delivery for about a month maybe longer. But, I also refused to take elmiron, or anything else for that matter. I was nursing and just did not want to risk it. I know others who have but I am too scared to. I credit my feeling better and having no flares to the herbs I take. I quit breastfeeding back in December and still have not had any bad flares, but I notice the very few flares I have had are only when I have forgotten to take my herbs or probiotics. I don't know if they work for everyone, but I know for myself a few friends of mine who also have IC who have been on herbs and probiotics are doing better.

              As for having another baby, you need to respect your husband's wishes and concerns, and just do what he decides. If he decides no, then just pray the Lord will help you not have that desire for another baby, or that He will make it your husband's desire to, whatever it is, that His will be done. If your husband's only concern is for your health and that is all, then just pray about it, bcuz you will have BAD flares, and the only herbs I know that are safe that help IC while pregnant are peppermint,spearmint, and marshmallow root. There may be others, but I am not familiar. I will also say if your body is not used to herbs then it may not even work for you, not to mention how you will handle it while pregnant. I would just say try to get into eating all the right stuff and taking the herbs your body needs specifically (with the help of a licensed herbal consultant {who has a great rep} and nutritionist). After doing all that for awhile, you will know if your body can handle another baby or not. I will be praying for you and I hope nothing but the best for you. I am not trying to discourage you, but it is an important decision, I know from my experience there were some really bad days when I was pregnant and I hated it, cuz it was so hard to be a good mama when I was in that much pain. I have been doing so good on the herbs now myself, I have been questioning whether or not we should try for another this fall. I really hate to get off the herbs I feel I need them longer than a yr, I have had such a terrible case of IC for so many years, I think my body needs to be on them longer to undo all the damage from IC and western meds and unhealthy eating. Good Luck I hope this helps somehow. I also want to add, we talked about whether or not to have another baby for quite a long time before we actually took the matter to the alter at church and prayed about it, and asked the Lord to help us decide. I am thankful for having our third, Joy. She is such a blessing. The few months of pain a suffered were totally worth it, and my husband and other daughters are and always have been a great help.
              Mrs. Ridings


              I was on...
              Loestrin 24(to prevent period induced flares)
              Elmiron since Feb.'07 for a year and half
              Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
              Tried Prevacid didn't work.
              Tried Axert for migraines didn't work.
              Tried Frova for migraines made worse.
              Atarax Feb.'07-Feb'08
              Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.


              Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!

              Find the good in all things and then
              anticipate the good so that you may enjoy it.


              (KJV)Psalms 37:
              3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
              4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
              5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.

              Comment


              • #8
                Hi,
                I know this post is kind of old but I was wondering if anyone that said they were diagnosed when they became pregnant did you symptoms go away once you delivered? I'm 23 weeks pregnant and I have gone to many different Dr.'s in the last few months and they also suspect I have IC. Possibly bc my uterus and baby and pressing on nerves. My urgency has gotten a little better but I don't know what to do about the burning in my vagina! I'm have to put an ice pack between my legs 24/7. I'm miserable and scared I won't be able to take care of my little girl once she's born.

                Thanks, Kelli

                Comment


                • #9
                  Re: Diagnosed @ 16 wks pregnant

                  Some ideas.. I truly believe also in probiotics! Not sure about pregnancy, I take them now and then, but.. I have had irritated bowels (IBS?) for years before developing IC, mostly I just ignored it and it got worse and worse with IC. Probably to do with some antibiotics I have taken when younger (there is a connection!) So, at one point I stopped all milk products and also fruits (milk and fructose intolerance suspected), milks products even for a year, and started taking strong probiotics called Omniflora N (German ones, I live there). I spent a lot a lot my husbands money on them, first I took 3-4 per day, later 2 per day, and I continued taking them like 1,5 years. First I even flared from them! IBS flare then, not IC.. I also had for many months awful pain near belly button, only one certain spot always, pain killers did not help (Novalgin) and so on. Could not even sleep from pain.. And so, after stopping milk products and most fruits (still can not handle apples good) and taking probiotics around 1,5 years, at one point I found I am fine! I mean, I had awful diarrhea all the time, pain, I never was able to go out during my period as diarrhea was killing me.. All this practically disappeared after this long probiotics time.
                  So, I am 100 % sure that if you feel discomfort during pregnancy, probiotics should help, just ask the doc opinion first.

                  And Kelli, far too late, but.. I have had for years bacterial vaginosis, and it can develop itself often also during pregnancy, unfortunately. That is the time to use vaginal probiotic pills! That is, I have taken them anyway for years, and my gyno said they are only safe thing vaginally to reduce the burning there. There is very big variety at least in Germany, I use Kadefungin, Vagisan, Vulniphan.. many possibilities to reduce burning naturally.

                  Comment

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