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  • Newly Diagnosed and Pregnant - help!

    Hi,

    I am new to this forum - though I have been reading through it for the past couple of months, I have never got the courage up to post. I have finally decided to do it!

    I am 27 weeks pregnant and only diagnosed with IC a couple of months ago (though was on multiple courses of antibiotics for weeks before my diagnosis for a non-existent UTI). As I am sure everyone does, I have been struggling tremendously with the diagnosis (pregnancy hormones don't help!) and worrying that I will be in this much pain for life and that nothing will help and how will I look after my long-awaited baby (IVF)....etc etc. It doesn't help that my husband is in the airforce and we got posted to a small town in Australia, and I have had to move 18 hours away to stay with my parents so that I can get proper medical care until I have the baby. I am trying to tell myself there are plenty of treatments that help, I just need to make it through the pregnancy, and not everyone's story is one of total despair.

    I was wondering if anybody has any experience and/or suggestions for dealing with IC during pregnancy. I am having trouble finding ANYTHING that helps with the pain/frequency apart from bicarb soda and water (and an ice pack to distract me), and it seems to be getting worse the further along I get. I don't know how I will last another 13 weeks!!! I have been EXTREMELY stressed for the past year with fertility treatments, moving etc...and feel that this has definitely made things worse. I ended up seeing a very understanding doctor last week who is helping me with the anxiety (Zoloft - hopefully will kick in soon!) and she has also given me some very low dose sleeping tablets which help (i only get up 3-4 times/night instead of 10 plus). I truly think stress is the biggest trigger for me (though it's hard to tell as I am in a constant flare!). Apart from that I have tried:-

    * IC Diet - have been sticking to bladder friendly foods only for the past 6 weeks and noticed NO change in symptoms. I even tried 4-5 days of nothing but chicken, rice and a few veges...didn't calm my symptoms at all.
    * Stopped taking all vitamins - No change and ended up terribly anaemic and rundown so started taking them again (didn't seem to make it worse)
    * Marshmallow Root Tea - am drinking it religously and hoping it is doing something.
    * Filtered Water

    Any other tips? I am so worried this will just continue to get worse and worse and not be treatable after pregnancy. The first (and unhelpful) urologist I saw told me there was no way I could develop IC during pregnancy as it goes into remission. Surely not everyone goes into remission? And it if gets worse during pregnancy, does that mean it stays that bad or does it sometimes settle a little once the weight of the baby has gone. It is so frustrating not being able to try any treatments - just makes me more stressed that i am doing irreparable damage.

    Thanks for reading through this (if you managed to make it that far!) and I hope everyone is having a good day

  • #2
    My symptoms were much worse when preg. I flet much better as soon as babies were born.

    Last preg I was in hospital for a flare (didn''t know at the time what is) and then in bed for the next 2-3 mons.

    but my symptoms were better afterwards.

    MG
    My are with you all. May you all find a way to peace and joy in your lives.

    Comment


    • #3
      Long reply to you, but please hang in there!!

      Hi, first my heart goes out to you!! Please keep focused on your new little one to arrive. Here's what has happened to me and I hope it gives you hope. Remember that you are NOT alone. There are lovely people with IC on this site that have reached out to me when I needed support. They have been my very best part of the recovery process from IC....which I believe is highly emotional.

      I too was recently diagnosed (10/2010) and feel your pain. I too went through IVF, but my IC was in remission. I didn't know this at the time. I knew I had a bladder problem, but I thought it had gone away for good. See, like you, my IC is caused or triggered with emotional stress. For example, I was 29 way back in 1995 and got married and moved from CA to FL with my new husband. I was very, very homesick and miserable. Being a newlywed, I got several UTIs, then put on antibiotics, on and on. Finally, I was sent to a urologist when I had symptoms of a UTI, but no bacteria in the culture. The uro was a female (in her 50's), who simply sat me down and said "I'm not going to examine you, I just want you to tell me what is going on in your life". I told her - newlywed, homesick, looking for a job, UTIs, pain, etc. She told me that I had IBS (irritable BLADDER syndrome - probably an old term) and she put me on some sort of bladder muscle relaxer for 4 mos. and it all went away - or went into "Remission". I never had another issue ever. 3 years later, we moved home to CA. I wanted children, and was having issues fertility wise. I ended up having laproscopic surgery and having a ton of endometriosis removed. A huge amount was removed from my bladder (sitting on the outside of my bladder, so not sure if it impacted it or not). A year later I did IVF like you. I conceived a baby boy at age 38. I then conceived naturally (this does happen) and had a baby girl a few weeks before turning 40. I was in heaven. No bladder issues. Now, fast-forward to today...I am 44now. My kids are now 6 and 4. Stress is high - I am an HR Director and am raising little tots. My husband helps a ton, but I am still a stress case.

      Here's what happend I think to bring out my IC. I took my kids to a park in the summer of 2009. I got a horrendous rash and thought they were bug bites or something from the park. They got worse in a few weeks and so I went to urgent care. They asked if I had small kids, and I said yes. They asked if my kids went to daycare and played in the sand. I said yes. Well, the urgent care doc. told me that I had skin mites, or "scabies" most likely brought home by my kids. I was HORRIFIED, as I'm a total clean freak. I emotionally freaked out, cleaned my house, treated my skin, treated my kids and hubby (although they had NO symptoms) and yet I got worse. The Dr. told me to do another treatment, I did. I got even worse, and more emotionally freaked out. I then went to another Dr. 3 Dr.'s came in and looked me up and down. They all said immediately - This is NOT scabies, this is a severe allergic reaction to something you were in contact with. They gave me prednisone and it all cleared up in days. Then, due to the stress of all of this (I think) I then got the bladder infection symptoms back. Went to give a culture to ensure it was a bladder infection and not my bladder wigging out like years earlier. Well, they lost my culture. I called my Dr. and told him about my past. He put me on Detrol LA. It seemed to help and I got through all of 2010 being on Detrol. I finally decided this summer to find out what was really wrong with me and saw a urologist. He immediately said I had IC. We stopped my Detrol, put me on Elmiron (400 mg p/day) and I'm currently on Elavil (20 mg.) for just 3 mos. I also get elmiron treatments as needed in the office when necessary. Those have been WONDERFUL and I was totally in remission during the holidays of 2010. I had coffee, wine, you name it, I ate it and had no issues. But, in January, I went back to work and majorly flared. STRESS, I think is my trigger and then, when I flare, you cannnot drink coffee, etc. or the flare won't go away. That's when I stick to the diet. If I am going to cheat, I slam Prelief first and am good. It took 11 treatments to get rid of my last flare that started on January 4th. I am now exercising and doing my best to deal with the stress. When I flare, I lose weight, am depressed, cry, etc. I also tried Cymbalta, but it made me worse. So, I am just trying to take things day by day and not freak out with flares.

      For you, there are many women who have had IC while pregnant and I've read about many here who have gone into remission after giving birth.
      So there is hope that this could happen for you!!! I have had the pleasure of befriending two wonderful girls here on this site who are in remission now. They have been kind enough to write me over and over and answer all of my many questions. They are what keeps my chin up in the hopes that next year I too, will be as far along in the recovery process as they are. They are my rocks. I hope you know we on this site are here for you and will help in any way we can to get you better. I promise that it does get better, but it is a very slow process and trust me, I am the most impatient person EVER.

      Sorry for the super long post, but I wanted to reach out and try to give you some hope. After your baby is born, I'm sure there will be other treatment options that your Dr. can offer to help speed things up for you.

      Let us know how you are doing!!

      Hugs,

      ~Michelle in OC,CA
      Hugs to my IC pals!

      -Michelle
      Wife and mom of 2 kiddos (11 & 13). I am 51 years old
      Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
      Elmiron instills gave me 2 full months of total remission until January of 2011
      Started Elmiron on 10/22/2010 (200mg twice per day)
      Started Elavil 20 mg. in 2/2011 - 8-2012
      Started 25 mg. Hydroxyzine in July 2011 - 10-2012
      Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
      Tums with any possible caution foods, now I take nothing but Hyophen if needed
      Started running in February of 2011, yoga in 2012 to current
      Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
      No longer using any supplements
      Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

      Comment


      • #4
        My story is very similiar to yours and I can tell you it will get better! I am 31 and was diagnosed 2 years ago after I had my very first UTI that just never went away. I became pregnant right away, before I had even started any treatment. I decided not to try anything while pregnant and it was a very tough 9 months. I was extremly uncomfortable and felt really bitter that I could not enjoy my pregnancy like my other girlfriends. Flash forward... and I now have a 6 month old little guy! I went into remission about 3 weeks after I gave birth. I remember being so worried that I was going to feel worse after pregnancy, but I went into remission. I have been breast feeding for the past 6 months and still fell great. I REALLY have to watch what I eat, otherwise I get a twinge and it reminds me that my bladder is still not healed. As I begin to ween of BFing in the next 5 months, I have decided to try a natropathic Dr. before I go the "traditional medicine" route. I am hoping that the symptoms do not come back worse then before.

        There are going to be a lot of what I call the "too much" days during your pregnancy, but I can tell you once you have that little one in your arms, you are going to be so proud of yourself. Stay strong momma!

        As far as advice...I used the art of distraction. Whether it was decorating the nursery, going to prenatal yoga, or working (i'm a teacher), this is what helped me through the really rough days. Just remember that as soon as your little one is here, you can start getting back to healing and feeling better.

        bug hugs,
        Amanda

        Comment


        • #5
          you ladies are wonderful

          thank you thank you thank you! what a godsend you ladies are. i was lying in bed this morning praying for strength to get through the day, and the first thing i did when i got up was check my post only to find such positive and encouraging responses.

          it is so wonderful to be in contact with others who have/had experienced the same thing i am going through, and came out the other end in one piece, and who are so kind and willing to give support and share advice. i feel inspired to keep going for my beautiful little bub and am going to try and find better ways to distract myself, relax a little more and stay positive.

          Michelle, what a miracle that you fell pregnant again naturally! infertility is a long hard road (another one!) and am glad you didn't have to go through all the treatment again. i feel like i am really being tested for patience lately - when i wanted a baby, i wanted one now! (didn't quite work that way) and now that i am finally pregnant i have IC I want that fixed now too!! i keep trying to remind myself that tough times and trials and are all character building (ha! like any of us want to believe that - pretty sure we'd all be happy with a weak character and no IC!) and i will come out the other end a stronger person.

          Amanda, I am so glad you are in remission after feeling so uncomfortable during pregnancy. I pray that as you wean your little one off breastfeeding you can manage your symptoms without a hassle.

          Thank you again and I will be sure to keep you all updated. Oh, another question - did you have cesareans or a natural birth? I have to have a cesarean due to multiple back fusions and nerve damage, and am hoping that the catheter won't make my bladder even more angry!!

          Big hugs,
          Kate

          Comment


          • #6
            Kate,

            I had a natural birth, but had an in/out catheter put in a few times during my 30 hour labour because little babe was sitting on my bladder and I could not pee! It stung for a few weeks after, but I soaked in Epson Salts and it seemed to really help! Feel free to PM me if you need a shoulder on those "too much" days!

            Comment


            • #7
              Kate, I'm so glad to have helped a little. I'm so thrilled that you found Amanda!!! See? There are lots of mommies out there who've had to deal with this IC stuff while pregnant and look, Amanda is one and she's in remission!!! Let her be your rock when you need it. I have two friends found from this site. Both are 29 and both found out about their IC at 27. Both are in remission and doing beautifully on the same treatment as I am. So, we do have support, and success. You just have to try super hard not to go into what I call the "downward spiral" when flaring. So much easier said than done, I know. I really struggle with that when a flare kicks in. It is definitely getting easier though.

              Yes, I was fortunate in getting pregnant on my own. Trust me, I was told by several Drs. that I had a 1% chance at ever conceiving on my own. Once pregnant thru IVF, I had several Drs. warn me that I could get pregnant again naturally. I thought, "No, not me...I'm 38, and perimenopausal, and it's never gonna happen, so why use protection?" Besides, if I could have one on my own, that would be the best. So, get this - when my son was 5 mos. old, I did get pregnant again naturally. I was in shock and really it hadn't yet set in. I somehow lost it at 10 weeks, but amazingly, I was ok about it. In some ways, I just knew it was a good sign that something in my body was working correctly fertility wise. So, sure enough, I somehow conceived my daughter a few months later. I call her my miracle baby no. 2 and my 40th birthday present. I would have loved to have had a third, but I figured that with a boy and a girl, what more could I ever want? They are 20 mos. apart and the best things in our lives. My recommendation would be to try again (IF you want more children) early if you can. I know the whole IC thing is horrendous while pregnant (horrendous in general), but I believe that trying again soon rather than later, would help with all of the hormones swimming around after having your first. That's just my belief. Anyway, feel free to email me at [email protected] anytime. If I can ever be of any support, just let me know. Please keep me posted on how you are doing!!!

              xoxo~Michelle
              Hugs to my IC pals!

              -Michelle
              Wife and mom of 2 kiddos (11 & 13). I am 51 years old
              Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
              Elmiron instills gave me 2 full months of total remission until January of 2011
              Started Elmiron on 10/22/2010 (200mg twice per day)
              Started Elavil 20 mg. in 2/2011 - 8-2012
              Started 25 mg. Hydroxyzine in July 2011 - 10-2012
              Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
              Tums with any possible caution foods, now I take nothing but Hyophen if needed
              Started running in February of 2011, yoga in 2012 to current
              Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
              No longer using any supplements
              Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

              Comment

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