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  • Does it always get worse?

    I am not considering pregnancy JUST yet, but it will happen in the next few years I hope Anyways I just wanted some feedback from people who HAVE been pregnant with IC and have done well., or managed with frequency and pain etc. I want a big family but I am scared that I will hate being pregnant! I really really hope this is not the case...

    Jenn
    28 yrs old,

    I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

    What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

    Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



    Me in my graduation gown!


  • #2
    try to read alot of the "i got pregnant/or am pregnant/have been pregnant" and went thru remission with ic posts. theyre very encouraging.plenty of ladies have positive stories and have went on to have normal pregnancies/children.
    Newly IC diagnosed as of February 2011.

    Medications I'm on that seem to work:
    Zoloft- one once a day
    Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)

    Failed Meds:
    Elmiron-after 4 months,digestive side effects got to be too much
    tramadol-allergic
    DMSO treatments(5-6)
    probiotics

    THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
    AROMATHERAPY-candles,incense
    Village Naturals Aches and Pains Peppermint Bath Salts
    Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion

    ACUPUNCTURE/HERBS
    Significant pain relief so far.

    MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    ***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***

    Add me on facebook Angela Hasic

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Lord, make me an instrument of your peace;
    where there is hatred, let me sow love;
    when there is injury, pardon;
    where there is doubt, faith;
    where there is despair, hope;
    where there is darkness, light;
    and where there is sadness, joy.
    Grant that I may not so much seek
    to be consoled as to console;
    to be understood, as to understand,
    to be loved as to love;
    for it is in giving that we receive,
    it is in pardoning that we are pardoned,
    and it is in dying [to ourselves] that we are born to eternal life.

    Comment


    • #3
      Hi!

      I just wanted to share! I went into remission during pregnancy!! My gorgeous, perfect son was born on November 9, 2009 and I stayed in remission until last week!! Thats over two years of remission!

      Comment


      • #4
        Oh, and I stayed off all medications too. I'm just starting them back up now.

        Comment


        • #5
          Thats wonderful! Congrats!!!

          Just a question, I have alot of trouble with birth control. I have not found a pill that I can take actually that doesn't make me flare badly.... and I have tried both monophasic and tri phasic pills (mind you I may not have found the right one yet)....I heard that if you can't handle BC than youll have a hard time being pregnant with IC? Is that true? I have not tried the progesterone only pill yet... and I am off BC completley...Im just not sure about anything! lol

          But I am really glad you had two years of peace!

          Jenn
          28 yrs old,

          I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.

          What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!

          Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!



          Me in my graduation gown!

          Comment


          • #6
            I had really hard time with the pill, but it wasn't bladder pain, it caused horrible vulvar vestibulitus, and also caused yeast and bacterial infections that woudln't go away. I've been so much better off the pill, but my IC still flares a bit right before my period. I've never heard that if you have trouble on the pill that you will have trouble with pregnanacy. Each pregnancy has different hormones, and my friends who have had multiple children have said that each of their pregnancies have been totally different.

            My docs have all said that they've found women with IC either get totally better, or they stay the same in pregnancy. They also believe that the increased blood flow to the pelvic area can help muscle spasms/PFD. I hope they're right, we're going to start trying soon, and it would be great to be in remission! You just don't know how it's going to go, so just prepare for the worse, and hope for the best. It also helps if your doctors are willing to work with you throughout a pregnancy. Good luck!
            I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

            Comment


            • #7
              My IC has been in remission since I found out I was pregnant last February. My pregnancy was a breeze! I only missed 2 days of work from it. One day from a UTI. The other was because I thought I might be in preterm labor.. on Labor Day. That wouldve been about a month too early, so I went home. After laying around for a few hours, I was fine. No trip to the doc. Anyways, I feel great! Im loving being a fulltime working breastfeeding/pumping mom!
              Meds: Percocet PRN; Pyridium PRN. First symptoms Dec 2005. Diagnosed in March 2006.

              I am the proud mom of a two year old boy! I was lucky enough to be in remission my entire pregnancy. If you have any questions regarding my pregancy, delivery, breastfeeding, or pumping, feel free to contact me!

              Im on Facebook! Just tell me you are from the ICN. Look me up under Kim Wayne.

              I love working as a CNA in a nursing home. Started school in August part time. Going for my LPN!!!!

              Comment


              • #8
                Hi y'all!

                I'm officially 14 weeks, and it's been an IC and UC flare nearly the whole time. However, I found the best doctor! I am "high risk" due to severity of IC (federally disabled), age, and anxiety disorder. Dr Ling is an OB and Director for Center of Pelvic Pain, and there are two urogyns in his practice! I was getting so stressed because no one would help with pain. Now I'm able to drive, exercise, and cook, etc! I'm thrilled! I hated being in bed. I'm taking pyridium, oxycodone rather than klonopin as needed, Zofran for nausea, fioricet for migraines, and melatonin to sleep. I am not allowed instills or other treatments like vaginal valium due to pregnancy. Beta endorphins from exercise help me the most with pain management, so I'm happy I'm no longer on bedrest.
                I would say that pregnancy is worth the pain. I tried for years to get pregnant and couldn't. Here I am at 40! Pretty crazy. Good luck to all of you. I was told I was infertile. God trumps doctors.
                Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                • #9
                  I already had 3 kids when I started having IC symtoms. We had planned on having another soon but I kept putting it off because I was afraid of how it would effect my IC. My 4th blessing came along 7 years later. My IC was better during my pregnancy. I did have pretty bad morning sickness with all my pregnancies so any pregnancy can have it's ups and downs. If you really want kids its worth it. I would try to find a doctor you like first.

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                  • #10
                    Everyones comments are so great to hear, it makes me think more positivly and I'm less scared about being pregnant with IC/PFD. My hubby and I are planning on trying this month, but I'm now flaring up from increased intercourse. I haven't ovulated yet, so I'm hoping I can get this flare calmed down before that happens. I think I'm getting anxious about everything, which doesn't help. Trying to stay calm...it's hard to do though!
                    I just started a IC diet/low-oxalate diet blog! http://jennysicparty.blogspot.com/

                    Comment


                    • #11
                      I had a fabulous remission period with my first pregnancy, I could literally eat almost whatever I wanted (I didn't try chocolate though, as I wasn't sure, and that's one of my worst trigger foods)..second pregnancy was very different from the get go..some remission but not as much as the first time, and some foods I could tolerate in moderation prior to the 2nd baby, I COULDN'T handle during the 2nd pregnancy..it was very different!
                      while TTC, warm soaks in the tub helped me immensely..not burning hot, but about around 100-104 deg F with about 1/2 the rec'd amt of epsom salts, and always a warm pack on my low back before and after the intimacy
                      good luck! it's worth it all to have a little one in my opinion, if one can have a baby

                      Comment


                      • #12
                        Hi preggers people!

                        I continue to go up and down symptomatically. Today is bad but yesterday was great and full of energy. I'm peeing constantly and pain is about a 5-6. Exercise does help but don't overdo it ya just gotta take one day at a time. High risk status is still in effect but I'm 16 weeks and feel confident I'll carry pretty close to term. Hope I don't need C section to avoid further IC symptoms and pelvic pain/urethral irritation. My dr is great!!! I've experienced weight loss over past few days that is concerning. Down to 94. Trying to rest and eat today. Avoiding percocet if possible plus I want to sleep and it wires me! Hope everyone is doing well today!!!
                        Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

                        Comment


                        • #13
                          Have you read the icn pregnancy journal
                          I ran across it while surfing around and thought it looked interesting.

                          http://www.ic-network.com/pregnancyjournal/

                          Comment


                          • #14
                            Preg journal

                            Yes! Havent read all of it but periodically. It's very good!
                            I have to say my second trimester is more full of energy and less pain. I'm enjoying that much better! I hear third trimester is tougher. You gotta just take your good days and run with them! I've been able to exercise 5 days a week and it makes a huge difference in symptoms! So glad I'm not having to reach for the oxycodone! I'm 17 weeks and gender determination is next week...so excited!
                            I do have about one down day in bed per week. That's not so bad. I'll take it!
                            Keep telling others about IC! Education is the way to the cure! LAUREN in MEMPHIS

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                            • #15
                              Re: Does it always get worse?

                              Hey you guys I know everything I reply on is old lol I was just wondering what happend after your pregnancy ?? If you felt better

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