well the heparin is out.  I couldnt hold it for as long today.  2 hours.  I am surprised that the pain has escalated since I voided.  After my first one it took almost 24 hours for my pain to get to this point. 

It is only my second treatment so I’m trying not expect anything, even once I have a few months of them.  Its just a little disapointing to have to take another breakthrough pill.  I am counting down the days until I get to do this at home so I can have all the lidocane I want.  It is soooo soothing. 


4 Responses to “darn…”

  1. Penny Scott Says:

    Hello, I hope it works for you. I wish you well and send comforting hugs your way. I know how you feel. I have given up on treatment. I just live with it and I work 50+ hours a week. My job leaves me with 1 1/2 days time to myself and the only morning I can sleep in is Sunday, so I haven’t even been to church. I’m not depressed, I just quit trying. I have so many Dr. bills to get paid and my urologist could really care less to treat me or not, they do not keep any kind of tabs on me or have a treatment plan for me. It’s just, go see them to get that DMSO, RIMSO-50 treatment and I can’t tolerate it. My hair fell out and broke off and I was so sick the whole time and got really swollen and my bladder would spasm. No one around here seems to have a clue about IC and I hit a brick wall basically. The doctors say there isn’t anything else they can do for me. My family forgets how sick I am so I am yet expected to keep a clean home and meals on the table and I do fall short but I really try hard and have been keeping up with the house, job and the kids – at least my youngest is in 4th grade that is easier. I don’t have anyone to talk to about this. I am hurting so much today and all swollen, I use heat for comfort. Then I have IBS really bad and the only medicine I take is my bioestrogen progesterone. I have to listen to my boss and other people belly ache and they have no clue what we live with and I end up always putting in so much time that by the time I get home I just want to watch my soap that I tape and go to sleep, but that’s when the kids get home from school. I was going to be a singer and I was on my way and then I got cancer and a hysterectomy resulted. After being told I was crazy for years because I was in early menopause. Somehow something went wrong because I never felt like I was healing right from the THSBSO and it turned out that I had IC. I have come full circle now and back to just living with it. I know you understand. Thank you for listening.


  2. baking soda Says:

    I want to say, I’m glad you have found some relief. The doctor in the ER said I could have IC. Due to the research and my symptoms, im sure I have IC. I was prescribe elmiron two months ago and never wanted to take; I do not like oral medicaton. Now I know to go to a urologist.
    You have helped me so much. I have been experiencing what you have, and yes it is painful. the only thing that comforts me is baking soda,1/2 a teaspoon and half a cup of warm water. The baking soda get rid of all the acid and takes the pain away weird huh. I would like to keep in touch. Tomorrow I will be seeing a chinese doctor, and do a detox, acupuntue and start taking some herbs. Not only do I have IC, I have low oxygen, low blood pressure and palpatations.

    Talk to you soon

  3. Dear Penny Sccott-
    I defenitly know where your coming from. I am so sorry your getting brushed aside by your DR. Although I know so many people in the medical community are less than caring, it still floors me to hear how people are left to suffer. I hate it. It sounds like your family could use a class in IC 101, but unfortunitly that is more than normal. Its hard to understand were in so much pain because we look fine on the outside. Or were not dying. I know when my cousin was diagnosed with lymphoma the family rallied around her for support(which I’m soo glad about)but when I was bed ridden for almost a year, I didnt hear from any of them. We’ll except for my parents. I still feel so alone way too often because no matter what were the only ones that understand. Have you ever thought about Pain Management. I know so many people are very weary of it, but although I still experience pain, its really helped me cope. And pain management doesnt always mean opioid. Read my blog about to perscribe, or not perscribe. Please keep coming back, I’m more than happy to have you here and your always welcome to post anything you want. I’m trying to start a web site which would be more in depth and have more opyions on it. I need something to do with my time!!! If you ever need someone to talk to, just say the word.

  4. Dear Baking Soda-

    I am so happy to hear that my blog has helped you. Please, please go to the urologist. I’m posting a blog about diagnosis so maybe you can get armed and ready incase the urologist doesnt know too much about IC, which unfortunitly happens way too often. ER visits seem all too familiar to me, I must have racked up tens of thousands trying to deal with my pain. I can totally understand not wanting to take oral medication. There are some other options once you see a urologist. They can directly install elmiron and heparin(which is very similiar to elmiron) into the bladder. Just know you are defenitly not alone. Please keep coming back as I will be posting more and trying to start up an actual web site. Let us know how the chinese DR goes. I have done a few alternative treatments but have never gone to a chinese DR. your always welcome. I’m glad to have the company!!

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