I read on Wikipedia that living with IC pain is like living in cancer pain and that my quality of life is the same as someone in end stage renal failure. What a ray of sunshine! But I actually thought I had cancer when the IC pain hit. I can't believe what a toll it has taken on my body for the last three years. I'm ashamed about how much weight I lost and I don't feel attractive anymore. I'm definitely damaged goods. And there really isn't a lot of research on IC.
You can't kill yourself. It doesn't matter how sick you feel. It would upset too many people. And who would take care of my cats?
Going to see the pain guy tomorrow. I think he's going to do the sacral nerve implant to interrupt the pain signals.
How's everyone else doing?
-Gloria
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Interstitial Cystitis/Painful Bladder Syndrome
- By Maggiecat
- Posted June 4, 2009 at 12:40 am · 7 replies
- In Living with a bladder disease
- Shared with the public
Explore topics in this discussion:
Cancer Chronic pain Back pain Reclast Anxiety Interstitial cystitis Oxycodone Pain Endometriosis Bladder cancer
7 replies
- Oldest first
- Newest first
- By Sharrylynn
- Posted June 9, 2009 at 8:19 am
- Report post
Gloria
I had interstim along with thousands of other people. It is not FDA approved for I.C., and it is not for pain at all. Doctors mislead people into that all the time. I have had this disease most of my lifetime with the Hunner Ulcers. There are all kinds of things to help with this disease and make life easier. I have permanent and irreversible spinal cord injury from the interstim that has robbed me of life more than IC ever did. Please reconsider and look into this a lot before going through with this. There are thousands of us all over the nation with injury. I know how awful this disease is and how hard it is to live with.
I am sorry your suffering so and if you would like to talk to more that have this disease and get more information I have a support group just for this and the ladies are great.
I_Shine at Yahoo Groups.
I_shine-subscribe@yahoogroups.com
Would love to have you there and know others would help you as well. There is a lot of information in the data bases,links,and files for this and the ladies that have endured this are great help.
Please before continuing with interstim go the FDA adverse reaction reports and look into this and read the MAUDE reports. I know that doctors voice this to patients as a miracle cure but the consequences of it are very serious when things go wrong. We all felt that have injury that we had the best of the best doctor when it came to this.
I am sorry your so down but I believe that lovely Gloria is still there just very confused, tired of pain, fighting this and doesn't know were to turn.
Hugs,
Sharylynn
- By Maggiecat
- Posted June 9, 2009 at 5:51 pm
- Report post
Sharylynn,
I will definitely link up with your group. But what can I do? Deal with doctors that don't want to prescribe painkillers so I can work and sleep? Maybe the more recent models of the stimulator work better?
I'm waiting on insurance approval. Three weeks. What happened to you on the Interstim?
Thank you for replying,
Gloria
- By Maggiecat
- Posted June 11, 2009 at 1:02 am
- Report post
Sharrylyn,
I went to a different pain specialist today. He said he wasn't sure if the Interstim was indicated for IC. I liked him. You can tell he's had a lot of experience dealing with people in chronic pain. Dr. Fell told me the truth. I have two chronic painful conditions (IC and endometriosis), neither which have cures and there was really nothing to do but go with the narcotics.
He had a good point. Chronic pain affects your whole body negatively, making your health worse. But narcotics don't hurt the body.
So I got 180 pills of Inset (oxycodone) and will medicate more frequently.
It's a little sad; he told me to stay working as long as I'm able to; he'll supply my drugs. But he does understand pain. That was a pleasant surprise.
How are you doing? Does your IC ever go into remission?
-Gloria
- By Giamarie
- Posted July 12, 2009 at 12:15 am
- Report post
Ive had I.C. now for 21 years,It is a painful, horrilbe disease without any cure..It feels like to me, a kidney stone pain,(which Ive also had),to answer the 1 question about how it feels, Yes, It feels like having Bladder Cancer w/0 the Cancer..They thought I had Bladder Carcinoma 2x's or cancer it came back negative,it was my Interstitial Cystitis flaring up as they said,after having a cystoscope..My Dr is trying me to get the Interslim but I have no problem with incontinence,I have the opposite,feel like I have to urinate but only small ammounts come out,then pelvic pressure which is painful,getting hardly no sleep,and the flare ups are intolerable..Iam 43,I got sick at 22..I also have Osteoporosis,Crohns,I.B.S,I.B.D., Arthritis,Auto-Immune Disorder..Iam fighting everyday to have a better day,its hard,Drs here will not help me with anti-anxiety meds,which help my spasms in the bladder and sleep and pain..Ive been to oncologists in past which then treated me very well, so I could at least enjoy my life w/o pain everyday..Now with just having the Reclast Infusion for Osteoporosis,I find myself sicker than ever w/o my Dr helping me,and Its hurting my family everyday Iam sick and in pain..So I do understand..The I.C.A. can help with finding Dr's for I.C. & support groups,if you need to talk write me back..If you ever need any info about living with I.C. write me..Always look at any medicines side effects before doing it,I didnt & now Sick..I understand..
- By NineToesOffTheEdge
- Posted November 6, 2009 at 1:24 am
- Report post
Yikes! You sound like me about the cats! The pain is bad, isn't it? What do you take for that? I found the addition of Librax helps with the spasms a lot. Of course Oxycodone as well. How are you feeling now? Did you take Elmiron? Thanks for reading and responding if you can.
- By jhewels2
- Posted November 21, 2009 at 1:33 pm
- Report post
Maggie cat if you suffer from IC find pain management that deals with IC patients. hwen we have patients that we have done all we can for there IC we send them to pain management we still treat the patients but they treat the pain where we can't. The pain management we send them to deals with IC see if you can find one that knows about ic and treatments that work. they will treat you with medications but also other treatments that work for IC. if your urologist does know of any maybe the doctors can work with pain management to offer there service for there patients. you probably have done the diets, cystohydrodistention, possible dsmo treatments and what else they offer. also make sure your urologist specializes in IC you can look them up on the hospital website and it will tell you what they specialize in. if they do not it is worth looking for someone who does and who offers pelvic floor therapy, and biofeedback. well ggod luck I know it can be so devasting do you retain urine also. good luck i have suffered with pelvic pain and have neuropathic bladder and it is devasting not to have any relief but don't suffer when my doctors treated me all that they could I asked to go to pain management and it was the best thing I ever did, but look for painmanagement that specializes in your pain nit just back pain that happened to me but I was able to change and have been going for years.
- By jhewels2
- Posted November 22, 2009 at 3:48 pm
- Report post
Hello I take narcotic pain medication and I work the pain meds help the pain and don't make me high so i am able to work. your body adjust to the medication. anybody that works with me has no Idea the amount of medication I take because I don't take it for the high but I take it so I can function through out the day with out severe pain. I don't want to be disable yet so I do what I can until my body says nomore. I don't know where yo work but like myself and a girl I work with has IC and we are both on FMLA this is called Family Medical Leave Act and it is for people with medical conditions that have to be out for periods of time from there illness. I am allowed to be out 12weeks out of the year. my doctors have written so that I can be out for pain or treatment as needed and my job can't fire me. I try to make my appointments around my Dr.'s schedule at work. I am a good worker so work has adjusted my schedule to try and give me time off one a week to go to my appointments so I don't use all my earned time. I do a great job so work is willing to work with me. there may be atime when I can nolonger do it but for now it works. so if you can check out at work and see if you have FMLA if you do apply for it have doctors fill it out when you can't come in you just call and say I won't be in fmla no questions asked. I hope your work provides it. good luck!
Add to the discussion