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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
Heidi
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
Heidi
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 am blessed to have an Indiana Pouch now
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