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  • #16
    Re: Does it always get worse?

    Hi Kporter655,

    I have noticed you commenting on the forums a lot and I know you are having a bad time. With my pregnancies my bladder was really bad for the 1st 12 weeks this was partly because I went off all meds. Things got better from the 2nd trimester, I still had some issues but overall I was much better. With breastfeeding I had an extra 10-4 months of feeling pretty wonderful and I could eat whatever I liked, which was great because nutrition is really important when you are pregnant and breastfeeding. With my 2nd baby IC came back 4 months after her birth, I have it under control again, it didn't take long before I was starting to see improvement and now 8 months later I feel pretty good most of the time. I went back onto all my medications and worked the breastfeeding around when I took things. My baby was sleeping through by 4 months so that helped a lot. I mostly took everything at night after her last feed. Are you on any medications? It might be worth talking to your Dr, many women have kept up their medications through pregnancy under Dr supervision.

    If you breastfeed hopefully that will give you relief too, it has done for lots of people here.

    After both my pregnancies the IC was different, it's keeps changing and evolving which is a real mind trip. I wouldn't say it was worse, just different, for example after baby number 2 my biggest problem is an overactive bladder and now I take vesicare, which helps a lot. I never needed to take an OAB med before. Pain and the constant need to go are not my main symptoms anymore and you may find this too.

    I know things are really bad for you right now and I'm so sorry you feel this way but don't lose hope, your bladder will probably feel a lot better soon, also when you are pregnant it is a lot easier to accept because you are supposed to go all the time!

    Be kind to yourself and try not to stress out about it, I know this is hard. It was hard for me to make the decision to have a 2nd baby and all the issues it brings but now she is here I would go through it all again in a heartbeat and I'm sure you will too!
    Diagnosed by cystoscopy Dec 2012 after 1st baby
    Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
    IC came back in July 2014, have been stable again for 2 years.
    I am now struggling badly with IBS-D.

    What seems to help me:
    Elmiron 3x per day.
    Cimetidine - no longer take this, it may have contributed to GI problems
    DH Aloe
    Cornsilk - Drink this as a tea occasionally
    Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
    Amitryptaline
    Probiotics, I am not taking these right now due to GI issues
    Lots of water
    Heat
    Panadol (I think this is Tylenol in the States)
    Sleep

    Comment


    • #17
      Re: Does it always get worse?

      I have been niserable since my 9 th week of pregnancy and im now almost 20 weeks im on be medication because the urologist I saw Dosnt think I have. Ic so my in hadn't perscribed me anything he says im verry sensitive to hormones and also have pelvic floor dysfunction ! And also my uteris is bigger for than it should be for my pregnancy and is pushing right on my bladder but I just don't know what to belive my wharf is broken I just want to be the mom I was before I would have never ever gotten pregnant again I wiuldnhave known

      Comment


      • #18
        Re: Does it always get worse?

        Also I was thinking I wouldn't breast feed so that my hormones will go back down quicker if it is really the hormones my body is freaking out too this has only happens to me one other time and I was on the depo shot and when it got out of my system I was normal again I don't know what to do

        Comment


        • #19
          Re: Does it always get worse?

          I would say don't decide anything now, you may feel fine feeding. Feeding can protect you against lots of stuf, I get no hay fever when feeding! So give yourself time
          Are you seeing a physio for the PFD? Stretches? Body work? As I type I wm lying on a ball to get to my trigger points, which has really been helping my pelvis and bladder
          Aldo remember you can get a second opinion! But may fe a combo if stuff....

          Comment


          • #20
            Re: Does it always get worse?

            Ya that's im worried about is that there may just be so much going on in my body that I may just have you tough it out till I have baby and see if my body has a chance to get better you know what I mean like after my organs get back to where they should be and my hormones calm down I am seeing a physical therapist and sound stretches my baby is litterally so low that I can feel it in my pelvis and I think may be putting a lot of strain down there but it is the worst feeling ever feeling that I need to pee constantly if I could get relief from peeing I really wouldn't mind going pee often it's just so mentally and physically exhausting to pee and not get the relief I wsnt

            Comment


            • #21
              Re: Does it always get worse?

              Hey sylviamber can you tell me what you mean by aob does thatesn you don't feel like you have to pee all the time ? But when you need to go you need to go ? Would you say after delivery the feeling of needing to go all the time went away ??

              Comment


              • #22
                Re: Does it always get worse?

                OAB is Overactive Bladder syndrome. The symptoms are very similar to Interstitial Cystitis and some urologists have a difficult time determining which one a patient has.

                "When you gotta go, you gotta go!"

                Comment


                • #23
                  Re: Does it always get worse?

                  But do you feel like your bladder and the feeling of needing to go all time got better after you had the baby

                  Comment


                  • #24
                    Re: Does it always get worse?

                    Hi again,

                    Yes Bladderella is right OAB is a different problem to IC. I am one of the lucky ones who has both! Right now my IC is pretty well under control so the OAB is now showing its self but I do think it did get worse after baby number 2 as I never had to take an OAB med before. What happens is I am feeling totally normal them BAM I have to pee right now or I will wet my pants. It's annoying but with vesicare the urgency isn't as strong so I can hold it and it goes away.

                    Yes, the feeling of needing to go all the time has got better but after I had the baby. One thing that really helped was breastfeeding as when you breastfeed you hardly make any pee, there were some days I only went 2-3 times.
                    Diagnosed by cystoscopy Dec 2012 after 1st baby
                    Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
                    IC came back in July 2014, have been stable again for 2 years.
                    I am now struggling badly with IBS-D.

                    What seems to help me:
                    Elmiron 3x per day.
                    Cimetidine - no longer take this, it may have contributed to GI problems
                    DH Aloe
                    Cornsilk - Drink this as a tea occasionally
                    Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
                    Amitryptaline
                    Probiotics, I am not taking these right now due to GI issues
                    Lots of water
                    Heat
                    Panadol (I think this is Tylenol in the States)
                    Sleep

                    Comment


                    • #25
                      Re: Does it always get worse?

                      I'm just hoping and praying that after the baby and uteris is off my bladder and the hormones are calmer that things will start getting better do you guys think so ?? Please tell me after pregnancy things will feel better !!!

                      Comment


                      • #26
                        Re: Does it always get worse?

                        Originally posted by Kporter655 View Post
                        I'm just hoping and praying that after the baby and uteris is off my bladder and the hormones are calmer that things will start getting better do you guys think so ?? Please tell me after pregnancy things will feel better !!!
                        Yes, I'm sure things will get better for you. especially if your Dr has said your uterus is large, it's stands to reason it is pressing on your bladder. All the best
                        Diagnosed by cystoscopy Dec 2012 after 1st baby
                        Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
                        IC came back in July 2014, have been stable again for 2 years.
                        I am now struggling badly with IBS-D.

                        What seems to help me:
                        Elmiron 3x per day.
                        Cimetidine - no longer take this, it may have contributed to GI problems
                        DH Aloe
                        Cornsilk - Drink this as a tea occasionally
                        Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
                        Amitryptaline
                        Probiotics, I am not taking these right now due to GI issues
                        Lots of water
                        Heat
                        Panadol (I think this is Tylenol in the States)
                        Sleep

                        Comment


                        • #27
                          Re: Does it always get worse?

                          I love you for saying that hahahha !!! At this point If any one says i will probably feel better I cling to it even though I know your not a doctor or anything im just happy you think I will feel better lol

                          Comment


                          • #28
                            Re: Does it always get worse?

                            It is so crazy to me how long ago this feels! I was the original person who started this thread.

                            I was no where near having a baby then.. but I am now.. and I keep looking to the boards to try and reassure me that I will be ok. I have to say that some days it makes my fears much worse. I know that most people post when they are in pain.. so I cant take it all as fact but it makes me very worried. I have been posting in a few of these pregnancy forums lately.. looking for hope. Everyone who commented on this thread now, are you ok? Your babies must be growing up! I am trying in the next year or so... and I am just trying to prepare myself as best as I can with all the information I can find.

                            Im glad that some people who have had good experiences have posted on this thread and others... I wish more did to give hope.

                            How can I stop worrying? I don't expect remission, but I just want to know that I can get back to where I am now with doing well with Elmiron... I cant wait to be a mom. I have always wanted to be pregnant for as long as I can remember.. and now I might actually get to be a mom in the near future. It seems surreal.

                            Please anyone have more good stories? Realistic ones? Not everyone goes in to remission, but I would settle for manageable with good day and bad days if I couldn't HAVE remission!

                            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


                            • #29
                              Re: Does it always get worse?

                              Hi Jenn,

                              I'm really happy to be able to reply on this thread to you as I have read so many of your posts and they have given me a lot of comfort in the past.

                              Congratulations on thinking about having a baby, it's a very exciting time for you and I'm sure a very anxious one as well. Although I can't say with certainty (no one can) I feel positive that you will be OK during pregnancy because from what I have read from your posts your flares sound a bit like mine and you think they are hormonal. Your bladder will get a nice rest from your hormones when you are pregnant and the other hormones you get when pregnant will make you feel wonderful (I know they did for me - I was in great spirits through my pregnancy, which made dealing with my bladder a lot easier).

                              For me, as you can see above I was not completely in remission during pregnancy BUT I was able to handle the extra frequency and occasional mild pain (most women get some bladder issues in pregnancy anyway). The 1st trimester was the worst but after that things were pretty easy. I was really pleased and proud that I could go off all the meds.

                              I had a sort of remission for 4 months afterwards with breastfeeding, but I think this was because I made hardly any pee. After this my symptoms came back and I went back on all meds while continuing to breastfeed around taking them. They started working again pretty quickly by 3 months I think.

                              Now my daughter is nearly 2 and my symptoms are pretty stable. I have never had a true remission and I'm not sure I ever will. I still get the occasional bad days but I can still go to work, play with my kids and get on with life. Most of the time I feel OK. I feel no worse now than I did before my pregnancy.

                              I say go for it Jenn, I'm sure elmiron will work again and you never know, you may actually feel pretty great through your pregnancy like I did. My kids are definitely worth it. There is more to life than IC, don't let it deprive you of a family.

                              Good Luck!

                              Sylvie
                              Diagnosed by cystoscopy Dec 2012 after 1st baby
                              Was doing well, had 2nd baby and enjoyed 4 months of remission with breastfeeding, I ate everything, it was great!
                              IC came back in July 2014, have been stable again for 2 years.
                              I am now struggling badly with IBS-D.

                              What seems to help me:
                              Elmiron 3x per day.
                              Cimetidine - no longer take this, it may have contributed to GI problems
                              DH Aloe
                              Cornsilk - Drink this as a tea occasionally
                              Diet and prelief - although i'm not very diet sensitive I still stick to a friendly diet and when I do eat something iffy I take prelief and have very little problems, I rarely flare with food.
                              Amitryptaline
                              Probiotics, I am not taking these right now due to GI issues
                              Lots of water
                              Heat
                              Panadol (I think this is Tylenol in the States)
                              Sleep

                              Comment


                              • #30
                                Re: Does it always get worse?

                                Sylvie: Wow, Your story is very interesting to me and gives me so much hope. I also believe I've had IC for a long time and it turned chronic when I first became pregnant this time last year. I had my baby in August this year and was properly diagnosed in November and began meds. I have been starting to feel a bit better. Well, I found out recently I am pregnant again! Wow! Not our plan but it's still a blessing. I'm hoping to stay on my meds ( especially Elmiron) through this pregnancy, with the go ahead from my doctor of course. I feel pregnancy hormones exacerbated my IC so I was looking forward to letting those level out again. No such luck there! May I ask if you felt that Elmiron ever kicked in to help with the frequency/urgency? Those are my main symptoms.

                                Jinny: I wanted to wish you all the luck and blessings on your decision to have a baby! You will be fine; getting through IC will make pregnancy feel like a piece of cake! I know that with my first pregnancy when my symptoms came on I was totally frightened, anxious, and freaked out!! No one could tell me what was wrong with me. It really messed with my head and took away from my experience. Now, going into this pregnancy I feel more at peace because I know what I'm dealing with. Be brave, you will never regret it! Especially after you hold that baby for the first time!

                                Comment

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