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Pregnant and in PAIN

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  • Pregnant and in PAIN

    I am currently 16 weeks pregnant (will be 17 weeks on Tuesday). I have been in terrible pain and do not see any relief anywhere. I recently spent 5 days in the hospital due to one of the worst IC flares I have ever had. I was so hopeful that seeing DR's and having all these tests was going to be so good in the end. Boy was I wrong!
    I finally got to see the Urologist and thought that they would have some answers. Instead I was told that they were at a dead end on treatment options and they were giving me a referral to a specialist in Seattle (I live in Spokane). They said the down side to the referral was I would be looking at 2-3 months out to get an appt. due to the Dr's schedule and all the paperwork. It has now been 3 weeks and they have not even gotten the referral process complete!I have called the urologist twice now and both times was told they were going to look into the status of the referral and get back to me and never got a call back. When I called the second time the lady said she left a message with the Uro I saw that started the referral and they never got back to her and they were going to speak with her that day and get back to me, and of course no return call again.
    I will be calling back tomorrow and crossing my fingers that they have at least a little information for me. In the mean time my Dr. has me on oxycodone for pain (class B for pregnancy) and Pyridium 3 times a day (also class B). At this point the medication is pointless as I am in constant pain regardless of whether I take the meds or not.
    Prior to getting pregnant I was taking Tramadol and Pyridium for minor flares and it was keeping things under control. When I would have a bad flare up the Dr would usually put me on Hydrocodone until the flare eased up.
    I have done the instilations as well as had a hydrodistention, both with no relief. I have seen more urologists then I can even count, and most lead to the same thing. They just don't know enough about IC to treat. The last Uro I was seeing on a regular basis was over a year ago. She had me on instills a few times a week. The flare ups got so bad that she was not even able to get the cathadir in due to massive spasming, so she decided to stop the instills. As I have tried most of the meds she said she wanted to to try physical therapy. I had never heard of PT for IC, but I was desperate. Unfortunatly, the so called PT was nothing more then learning breathing techniques similiar to lamaze. It was clear to me at that point that this lady had no clue what kind of pain came with a severe flare up. I lost hope for a long time after that, and as I said I did not see another Uro for a year, Until my recent flare up. I then realized I needed help as I could not get it under control. By the time I was actually able to get an appt (2 months later) I found out I was pregnant. This is when I went to the Uro and was told that they did not know why I was scheduled with this Uro as he has no background with IC at all, and due to me being pregnant he was not willing to work with me until after I had the baby!
    VERY LONG story short, I really need help!! I am a married mom of 2 beautiful kids ages 7 and 3, and of course pregnant as well. I feel like I am not only missing out on so much in life, but more importantly, I feel like my kids are missing out. Most days I can't even get up, I lay on the couch with a heating pad on my bladder praying for relief.
    If anyone has been pregnant with a flare up and found ANYTHING to be helpful at all I am desperate and willing to try anything at this point.
    Thank you

  • #2
    Hi Heidi.
    First off, I am really sorry for all the pain you are going through. I also have IC and have pain all the time. I just tried the bladder instill using heperain,marcaine,kennalog,biocarb, and I had a reaction where I could not even pee afterwards for a while. One of the meds must have swelled me up.
    I am not sure how it is to be pregnant and have IC as I did not have IC when I had my son, who is now 15. But I really feel for you as I know how doctors can be when a women is in pain and pregnant, nobody wants to help in fear of something hurting the baby.
    Have you talked to your OBGYN? You would think she could offer you something. I wish I had some answers for you. Hopefully someone else will chime in. I pray you get some relief real soon. Sending Big )))gentle((( hugs your way.


    • #3
      I'm so sorry you are suffering like this. I can't even imagine going through this pregnant. I didn't have pain during my pregnancies, but I'm uncertain as to when my pain started.

      I sure hope they find something for you to help soon.


      • #4

        Newly prego and feel your pain- I have no pregnancy experience but ask perhaps for trials of the following.

        What about some valium for the bladder spasms since I think most risk is with A) potential for abuse and floppy baby and they can just watch the baby after it comes out and B) for some old data on cleft palate but I think you are far past that stage or my favorite and a class C which agian is mostly due to potential addiction is B and O suppositories, totally hard to find (I can give you my pharmacy if you like) but they are the only thing that really help in a bad flair for me.

        Would methadone perhaps give you more pain relief? I am so sorry. Please let me know if you want to chat. PM me and I will send you my email. Sending you big huge hugs!!!

        As for PT with IC, there are some really good people at pelvic floor and trigger release, I wish you lived here, i would have names galore.

        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.:


        • #5
          I am ready to have my first baby and have had IC for over 3 years. Pregnancy and IC are not an easy thing. I wanted to make a coment about PT which has helped me tremendously. I think that the lady that you went to didn't know that much about IC. A good PT can make a huge difference. My pelvic floor muscles were so spastic that I couldn't even dream about getting pregnant. After 3 months of PT twice a week I was able to have sex and luckily I got pregnant right away. I think that PT helps when you have the right PT that is trained and educated about IC. Good luck to you with your pregnancy. I'm so sorry that you have to go through it but you will get through it. Hang in there and I hope that your pain has subsited.