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  • Pregnant 31 weeks: HELP! -flare won't stop

    Dear Friends:

    I really could use some advice and help with you that have IC and did NOT go into remission. I have NOT gone into remission at all

    I am 31 weeks pregnant with my first.. a little girl.........and I've had a horrible horrible pregnancy with my IC. The frequency and pressure is out of control and feels like someone is just squeezing and stabbing my bladder.

    I have not taken any vitamins and have followed the IC diet and NOTHING IS HELPING

    The first trimester was absolutely terrible, as I went off my Vistaril, which was helping my bladder pressure and frequency for two years.......

    The second trimester was not much better.........and now in my third it's out of control......

    For the last 7 months I have gotten NO SLEEP I'm up every 15 minutes going the bathroom with pressure and frequency and have been in tears.

    I'm so sad that I was chosen to go through this problem and that I can't enjoy my pregnancy......it's just not fair.

    I see a high risk OB since they also found a fibroid that is also sitting on my bladder as well..

    The high risk OB wants me to try a pain medicine / narcotic called Ultram and I'm so so scared, to try it.......as I don't want to harm the baby.

    My regular ob gave me Vicoden to try and I tried just half and it flared up my bladder even worse, so I stopped.

    I'm scared try the Ultram that the High Risk dr. gave me, he assures me it won't hurt the baby.. but, how can anyone be 100% sure???

    I'm at my wits ends as the pressure and frequency is sooooooo bad I can't handle it......it feels like someone is stabbing and squeezing my bladder nonstop...........

    I'm sooooooooo sad that I have this problem and can't enjoy the special blessing that is coming


    Please - if any of you out there have had a rough IC pregnancy and was on meds that helped you with the pressure and frequency can you please email me and give me some advice.......

    any advice on pain medicine or any medicine to help this horrible frequency and pressure feeling AND SAFE TO TAKE DURING PREGNANCY , please please let me know

    Sincerely
    Bunny
    Austin, TEXAS

  • #2
    My suggestion is to listen to your physician. He is well trained in high risk pregnancies and protecting unborn babies.

    You are almost there --- very soon you will be holding that tiny one in your arms. Hang in there.

    Sending gentle hugs,
    Donna
    Stay safe


    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

    Have you checked the ICN Shop?
    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [3MG]

    Anyone who says something is foolproof hasn't met a determined fool

    Comment


    • #3
      Hi Bunny,

      I just wanted to say how sorry I am that you have not been able to enjoy your pregnancy. You're actually the first person I have seen on these threads that didnt go into remission during pregnancy.

      I am planning on trying to get pregnant next year and I am absolutely petrified. I've literally lived my entire adult life scared to get pregnant because I'm so horrified over what my IC will do during pregnancy. I've waited so long that now I'm 35 and still have no kids. I just started seeing a UroGyn who shares a practice with an OBGYN and they both keep assuring me that they will both follow me through pregnancy & everything will be fine. But they arent the ones with IC so I feel that they cant truly understand my pain.

      Both docs keep telling me that they choose intallations as the only treatment for pregnancy and say they have very high success rates. Have you tried the intstalls duing your pregnancy?

      I think you are a soldier and I am so glad that you wrote about your experience on this forum. Knowing that some women dont go into remission will help me be more prepared for my future with IC. I will pray for you that you will find some relief so that you can enjoy the last few weeks of your pregnancy....

      Jennifer

      Comment


      • #4
        Hmmm. I might guess that the fibroid that is sitting over your bladder is being pressed on the tender bladder by the weight of the uterus/baby. I had/have a large benign ovarian cyst that was pressing on my bladder in the first trimester and my IC was insane, especially the frequency. I totally get where you are now. In the second trimester (for me) it got better as the uterus lifted up and pushed the cyst over to the side of my abdomen, which was confirmed by ultrasound, also I can feel it if I press. For you, though, since the fibroid is in your uterus, it can't move anywhere but down and is probably contributing to the pressure. I obviously can't be sure, but I would guess that after delivery you will start feeling a lot better as the pressure is off the bladder. You only have a few more weeks left...I know it is hard but you can get through this!!!
        30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

        My experience:
        ~Previously took Elmiron 100mg three times a day
        (9/29/05-7/06)
        ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
        ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
        ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
        ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
        -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
        -20 month postpartum remission from 4/17/09 to 12/10/10.
        -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

        Also doing:
        ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
        ~Prenatal DHA/Fish oil supplement
        ~Vitamin D supplement
        ~Culturelle probiotic

        Comment


        • #5
          I don't have great suggestions, but wanted to tell you to hang in there and you're almost to the finish line!!! Once baby is out, you'll forget the misery. That being said, you do need relief now. Trust your doc when it comes to pain meds. They pick them based on what is proven to be safest (no med is completely safe) and also based on what stage of development your baby is in. Also, can you find a position that's more comfortable. One that would take pressure off your bladder and pelvis even if just for a little bit? Head down, butt in the air always relieves pelvic pressure for me... but I'm not pregnant.

          Stress is such a trigger for the IC and being in constant pain just keeps that cycle going. Are you able to take any sort of relaxation class or yoga? Something that would focus you on something else and away from the pain... deep measured breathing, etc.
          Lifelong IC symptoms, only diagnosed Oct 08 with cysto/hydro; lifetime IC has led to pelvic floor dysfunction, uterine prolapse, and vulvodynia. Fun!

          Comment


          • #6
            Hang in there...I went throught the same thing with my last pregnancy, and I know how absolutely awful it is. But I can honestly say that before you know it, you will be holding your beautiful baby...and believe me, I hated it when people said that to me, but it's so true. I would definitely try some meds....especially given you are well into your third trimester. Painkillers are especially safe, and I believe you can also take Atarax. Just press your doctors for help.

            Comment


            • #7
              I do not have much to suggest either...my heart just ached hearing your agony and pain. ((((HUGS))) to you. Hang in there, you are almost there.
              I am so sorry that you are in such pain and are unable to relax and enjoy your pregnancy....
              I am sure you have tried everything....but Have you tried hot baths? or a hot heating pad to the bladder....

              I was also wondering, did they make sure you do not have a bladder infection? (just thought I would ask..just in case...), but I am sure they checked for this...

              Hang in there....sending you positive energy and healing vibes.

              Peace

              Comment


              • #8
                I'm so sorry to hear that you have not been able to enjoy your PG!!!

                I will tell you this...I was on Vicoden with my Daughter and my son..(who is 2yrs old now)

                My doc told me I was only allowed to take 1 a day if I needed it for the pain. The pain I had with my son was much worse then with my daughter.

                because my son was so low, my bladder was pushing its way out towards the end...Gross I know...so u can see that I do understand what your talking about. lol

                I know this won't ease your mind much...but my kids are all in great condition!!

                My only advise that I will give you is this.....People will want to give you so much advise from now until that lil one is a teenager.....ALWAYS GO WITH YOUR GUT....a mom knows and that is the truth!!!

                Even if in your head it doesn't make sense...listen to your gut!!!

                Even if a doc says no ur wrong about whatever...if your gut tells u something else, listen to it!!

                You doc is only trying to help you with ur pain control, and I don't think he/she would rx u a huge amount....

                But that is for you to decide.

                Best wishes and congrats on the new lil one
                Live your life to YOUR best, and Love to YOUR best!!!



                DX in 03 with Shingles
                Removal of Left ovary due to Cyst in 2005,
                I have had cyst since I started my period as a child age 12
                Hysterecotmy December 06
                IC DX March 07 by PST
                2 "rescue" instills in March 07
                Cyco May 07 confirmed IC
                Uro study June 07
                1st Pain Block July 17,08
                Hydro/Cysto Nov 11, 2008
                12-11-08 was told I had alot of inflamation

                Meds: Allergic to 6 things
                Premarin......taking the gen cause I get it at Walmart for 4$$
                Presique for my drepression :woohoo:
                Abilify for my depression
                Adderall ...found out I'm ADD...makes sense now
                Kolopin for anxiety
                Noroco for my pain
                Valtrex for my shingles as needed

                Sorry if my spelling is off on the meds [/FONT]


                http://community.webshots.com/user/s...host=community

                Comment


                • #9
                  Hello and first off I am so sorry you are having such a hard time. I have a 3 week old daughter and I did NOT go into remission with pregnancy so you are not alone!! What I can tell you is I felt pretty darn awful towards the end and it was all the weight of the baby. As soon as I delivered I got complete relief. My IC is better now than it was before getting pregnant and I even had a catheter at the hospital and a vaginal birth. I pray my relief continues and if so than all the pain during pregnancy was worth it I stayed on Elmiron during pregnancy and even increased it and my baby is perfectly healthy. However as you know you will have to make the decision to take meds with your dr. I would ask about the Vistaril since you got relief from it before. I know it seems like an eternity away when you are in pain but I hope I can give you some hope.
                  The combo of things that brought me out of remission were artificial sweetners, liquid vitamins with citric acid, tight pants, lower body workouts and stopping all my allergy meds cold turkey during height of allergy season. I wish I knew back then what I know now about IC
                  First IC symptoms Spring of 2000; In-office cystoscopy 2002 -negative; Remission until 2007 (yeah!!); Negative PST spring of 2007; IC diagnosed via Cystoscopy and Hydrodistention 7/24/07; Another In-office cystoscopy 4/9/10 with biopsy showed inflammation
                  Treatments for my IC/PFD: Elmiron 400 mg per day; walking, Zyrtec, Claritin, Singulair, Neurontin 100 mg per day; Ice packs and laying down; About to try Cytotec
                  Tried and Failed: Heat (always makes me worse!), Heparin instills -too painful for my urethra; Atarax (interfered with my quality of sleep first time, second time dried my bladder out; Elavil makes me sick, lidocaine patches (just plain don't work), Cystoprotek (only tried a couple months but didn't seem to do much), Aloe Vera caps, pelvic floor therapy, trigger point work flared me worse, Lyrica (bad stomach pain)
                  Other Diagnoses: PFD 2009; Fibromyalgia 2006, Osteopenia 2012, GERD 2006, Gastroparesis (delayed gastric emptying) Anxiety: Other medications: Ambien, Dexilant, Ibuprofren, Necon 1/35, Voltaren gel for tailbone
                  BABY GIRL 10/28/08 *** BABY BOY 7/8/11

                  Comment


                  • #10
                    I feel your pain....

                    I will be 13 weeks along tomorrow & this entire time I have been in pain...almost like when I first was diagnosed with IC I had about a week of relief and thought I was going into remission, but then it came back stronger. Was tested for a uti & that was negative, so it's defo the IC. I actually started back on two natural things that I was on before...Pumpkin Seed Oil and Marshmallow Root. I did much research and they are safe during pregnancy...besides, the docs don't want me on meds, which never helped anyway. The natural things don't work over night, but for me, they are all that has ever worked and when taking them I do notice relief from the pain & burning I also have a homeopathic treatment that helps with the burning. I wish you the best of luck & hang in there...your baby will be here before you know it!! I hope at some point that I (as many others have) do go into remission...I'll be keeping my finger's crossed

                    Alisha xoxo
                    Here is my MySpace page
                    http://www.myspace.com/luvingace

                    IBS, GERD, Pelvic Floor Dysfunction & Fibromyalgia
                    Interstitial Cystitis
                    Hormones & stress trigger my IC flares
                    Marshmallow Root tea works wonders
                    Marshmallow Root capsules
                    D-Mannose with CranForte
                    Aloe Vera Juice
                    Pumpkin Seed Oil capsules
                    Garlic Oil in a capsule
                    A good Probiotic
                    Homeopathic Bladder Irritation Tablets
                    Tae Bo twice a day...get fit!!
                    YOGA...gotta keep on doing that!! Namaste


                    "Fire Bad, Tree Pretty"

                    Proud mommy to Summer Rayne (3/20/01) and Cullen Phoenix (6/3/09)!!

                    Comment


                    • #11
                      13 weeks here and in IC flare. I hope you get some good advice. I'll be waiting listening for some. I will look up pumpkin seed oil. I sure could use a miracle herb. I am in tremendous unbearable pain.

                      Comment


                      • #12
                        Originally posted by cherish View Post
                        13 weeks here and in IC flare. I hope you get some good advice. I'll be waiting listening for some. I will look up pumpkin seed oil. I sure could use a miracle herb. I am in tremendous unbearable pain.
                        I am now just over 13 weeks and believe me...the Pumpkin Seed Oil & Marshmallow Root does help!! PM me if you need more info

                        Alisha xoxo
                        Here is my MySpace page
                        http://www.myspace.com/luvingace

                        IBS, GERD, Pelvic Floor Dysfunction & Fibromyalgia
                        Interstitial Cystitis
                        Hormones & stress trigger my IC flares
                        Marshmallow Root tea works wonders
                        Marshmallow Root capsules
                        D-Mannose with CranForte
                        Aloe Vera Juice
                        Pumpkin Seed Oil capsules
                        Garlic Oil in a capsule
                        A good Probiotic
                        Homeopathic Bladder Irritation Tablets
                        Tae Bo twice a day...get fit!!
                        YOGA...gotta keep on doing that!! Namaste


                        "Fire Bad, Tree Pretty"

                        Proud mommy to Summer Rayne (3/20/01) and Cullen Phoenix (6/3/09)!!

                        Comment


                        • #13
                          Miserable & hating life

                          Hello, I am 11 weeks pregnant and currently in a flare that has been ongoing for about a week now. I was diagnosed in 2008 with IC (started having symptoms in 1999), not sure but I think I could suffer from PFD as well. My symptoms of a flare have always been the constant urge to urinate, pressure on the bladder and can't get relief when I do void my bladder. This is my 3rd pregnancy, one live birth, one Misscarriage this past summer. I did not experience anything like this in my past pregnancies. I actually spent 2 1/2 blissful years of remission after the birth of my daughter thinking I was healed! I did not live life like an IC patient, I ate and drank whatever I wanted. I miss those days and now I feel I took them for granted. Because now I am miserable and feel there is no hope! I'm so scared this will last the entire pregnancy with no relief or maybe not go away even after the baby. I know my husband is so frustrated as I can't even help with our daughter. I seriously spend almost every waking moment on the toilet or in the tub. PLEASE PLEASE ladies! If you know of anything that will help
                          Or stop this flare please post! I'm not on any meds, just taking pyridium, and prelief, both don't seem to be helping much at all. I've read that some women kept taking elmiron while pregnant and other medications, I'm hoping I can't suggest that to my OB. My OB doesn't seem to know much about IC and there is no OB in my city that specializes in it. My urologist won't treat me because I'm pregnant. Question also for you ladies taking marshmallow root and pumpkin seed oil.......where your symptoms the same as mine and where can I find it? At a Kroger or like a GNC? Please help me! I'm in tears constantly and I go back to work next week and the state I'm in I don't see how it's possible. Thank you!
                          Symptoms: urgency, frequency, difficulty urinating, weak and hesitant stream.
                          Suffered with IC since 2000 with mainly frequency, officially diagnosed in 2008. Started elmiron once diagnosed until remission for a blissful 5 years.
                          I've always considered my IC mild and manageable until remission ended on 12/26/12. Symptoms returned while 10 weeks pregnant with spasms that caused difficulty emptying bladder and urgency. Had ok days and BAD days entire pregnancy. My symptoms seem to be under control as long as I take my meds everyday.

                          Current meds:
                          Elmiron: 400mg
                          Amitriptyline 45 mg
                          Flomax .4 mg
                          Quasnese
                          Valium suppositories ( as needed)
                          Glucosamine supplement

                          Comment


                          • #14
                            HI!
                            Congrats on your pregnancy. I went through 2 really super hard pregnancies with IC and I did not go into remission at all. I did a lot of different things and with my MD's help I was on meds and installations. Its super hard right now because like IC in general if people don't understand it they flounder. My OB reminded me that it doesn't take a rocket scientist as an MD to look up a med and see the risks (or treatment). My Uro bailed too. All I can say is you need to drive the bus if you can. I felt so vulnerable and it was hard, but being educated about each decision helps. I also did PT. I am happy to chat with you. Your not alone. It is really hard. I never took the marshmallow or pumpkin.
                            I am blessed to have an Indiana Pouch now
                            IC since childhood, finally diagnosed at 31 yo
                            PFD/Pelvic Pain,SI joint and LBP
                            Low Back Pain s/p spinal fusion at 19 with more nastiness in back
                            Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
                            Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
                            Radical Cystectomy with Indiana Pouch 2/3/12--->multiple complications and revision of ureters in pouch due to a giant ball of scar tissue in 8/12, occasional pylo, L kidney small and scarred, low flow
                            Hysterectomy 2/3/12 w one ovary removed
                            Dry Eyes
                            L radical nephrectomy 1//3/14 after a long "what if " the conversation, kidney working 4 %, path said full of absesses
                            Still have issues, still take meds.

                            I have worked some, been doing pilates, just got a post masters in nursing, learning to pace myself.
                            Learning things I can't do, learning things that I need to take a LONG time to master and regain myself, but mostly just so happy to be bladder free.:

                            Comment


                            • #15
                              Re: Pregnant 31 weeks: HELP! -flare won't stop

                              Mine's going just as bad. Funny, I live fairly close to you. I am using Young Living essential oils for all of my ailments. Though it gets annoying for how often I need to apply, I am much more okay with being annoyed than feeling helpless. The oils work wonders, and I don't have to worry about side effects. These save me a great deal of emotional conflict...I was wondering if I could even handle this pregnancy, and now I can.
                              LadyoFire
                              ICN Member
                              Last edited by LadyoFire; 05-14-2014, 10:18 AM.

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