Latest Blog Article: IC Awareness Daily Fact #18 - Stress and IC
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  1. #1
    ICN Member
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    Feb 2012
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    12

    1st Cysto/Hydro today

    Hello Everyone
    I had my first one today. I have been haveing symtems since Febuary this year. I started having Elrimon instills a few weeks ago could not get my pain level under controll, even though I take 3 different meds and follow the diet, they would not give me any pain meds. So they scheduled me for the Cysto/Hydro, after I went in for a treatment in such major pain. Well the doc did not find anything abnormal and doesn't believe I have IC. But my bladder is 3x's normal size. He told me he would wait to see if this helped me in any way at my follow up appt. with him. He also wants me to go see my Gyno thinking it might be something going on with my female parts. Relieved and confussed all at the same time. Has anyone been told any of this??
    I could really use someones opinion. THANKS

  2. #2
    ICN Member cass2376's Avatar
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    Jun 2005
    Location
    Manteca, California
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    368

    Smile Hang in there, your not alone

    Hello Kansas, I hope you are feeling better today. I know how you feel, I just had my hydro/cysto done 1 week ago today. I have mine done every 6 months to help with pain and peeing every 15 minutes! Before I was diagnosed years ago, I saw a Uro Doc and he did a quick in office cysto (it was soooo painful). He said he thought it was all "female" and sent me to a gyno Doc. When I saw him, he looked at my chart and asked me a bunch of questions. I also took this paper "test", the one the use for IC sometimes, and he sayed I "passed" with flying colors. (which was not a good thing in this case) He said he thought it WAS my bladder and that he thought it was IC. I was also having some problems with Endometriosis (sp?) and HEAVY bleeding as well, so he did a full hystorectomy (sp?). It was nesessary unfortunatly. He told me that he was sure I would still suffer from all the crazy syntoms I was having, minus the bleeding, and if and when this happened, he was going to have an IC specialist from San Diego come and do a Potasium Sensitivity Test on me to confirm I had IC. Sure enough, 8 weeks later..still having major pain, frequent urination, burning, the whole nine yards. They did the test and I finally got my diagnosis...moderate to severe IC. All this said, don't give up, find another Doctor and see what they say. Even if it's not IC, you need to find out what is going on and get relief. If you have any more questions or concerns, I am here. Hang in there and take care...gentle hugs, Cassandra
    dx Fibromyalgia April 2000
    dx Endo. Dec. 2003 had hystorectomy Feb. 2004
    dx IC May 2004
    dx Acid Reflex Nov. 2009
    dx Restless Leg Syndrom July 2010
    dx Degenerative Arthritis in my spine Oct. 2011
    lost my mind: A long time ago!! LOL

    Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

    Meds: Elmiron 100mg three times daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 15mgs 2 times a day for chronic pain , Norco 7.5/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Pyridium as needed, Pepcid 20mg twice daily for acid reflex, and Zyrtec once daily for allergies
    Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

  3. #3
    ICN Member
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    Feb 2012
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    12

    Thanks

    Thank you so much for responding back to me. I talked to my gyno and she thinks it all bladder she wants to look over all my paperwork. I start PFD theropy on monday and no more Elmiron instills. I am feeling a little better still a little cramping. He had to put in almost 1400cc of saline in my bladder to get it to extend. I hope this does work for me, but still wondering what they are going to do with my bladder being so large. I will keep you informed. Thanks again, nice to have someone to talk to that understands.

  4. #4
    ICN Member cass2376's Avatar
    Join Date
    Jun 2005
    Location
    Manteca, California
    Posts
    368

    Smile Your welcome!

    Your very welcome! I am glad you are feeling a little better happy to hear that your gyno seems to be willing to help you get to the bottom of things. I am sure they will figure out what is wrong. Don't give up till you get answers. It took me 3 1/2 years to get my diagnosis. I am glad they are starting treatment for your PFD, hopefully that will help. Take care of yourself, rest, take your meds, and you will feel better in no time. God bless, Cassandra
    dx Fibromyalgia April 2000
    dx Endo. Dec. 2003 had hystorectomy Feb. 2004
    dx IC May 2004
    dx Acid Reflex Nov. 2009
    dx Restless Leg Syndrom July 2010
    dx Degenerative Arthritis in my spine Oct. 2011
    lost my mind: A long time ago!! LOL

    Isaiah 41:31 but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

    Meds: Elmiron 100mg three times daily, Gabapentin 3200mg daily for nerve pain, Trazadone 50mg, Morphine ER 15mgs 2 times a day for chronic pain , Norco 7.5/325mg 2 times a day for breakthrough pain, Simvastatin 20mg for high cholesterol, Pyridium as needed, Pepcid 20mg twice daily for acid reflex, and Zyrtec once daily for allergies
    Also a big hug and kiss from my husband Joe and my 4 kids-Jo-Jo, Jenae, Victoria, and Janelle everyday as needed, ( I take this "med" often )!!!!

  5. #5
    ICN Member bjcov's Avatar
    Join Date
    Nov 2007
    Location
    Benton City, WA
    Posts
    788
    I'm trying to find a PT who knows about IC and PFD. I went to a PT locally and she confirmed that I do have a tightness on the pelvic floor but the only thing she is gonna do is TENS and Kegals. I've read "Headache in the Pelvis" and they say not to do kegals. And since that appt and doing those kegals, I have felt worse! I live in a relatively small part of Washington State and I have already travelled the 4hrs to see a Uro in Seattle and I'm really hoping I don't have to travel that far for PT. But I will do any and everything to feel better! Wish me luck!
    symptoms when in a flare:

    I feel everything in my urethra but I know its really my bladder. Pressure, stinging, urgency,tingling feeling thats hard to describe.
    *I have a fibroid on my uterus near my bladder.

    Medication
    100mg Amitripyline ( I have seriously gained almost 50lbs on this drug but I feel it works)
    Flexoril 10mg (doesn't work)
    Hydrocodone 5/325 PRN
    Cetalopram 40mg *severe anxiety over flare

    Physical therapy hasnt really helped but I love her! I've learned so much! She states that my muscles around
    My urethra are very tight.

    currently seeing a Gyn in my town and a Uro in Seattle (4 hrs away)

    I have had lots of long term remissions. Currently been struggling with good & bad days since Jan 2012



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