Interstitial Cystitis (IC) Support Group
Interstitial Cystitis (IC) is a urinary bladder disease of unknown cause characterised by pelvic and intense bladder pain, urinary frequency (as often as every 10 minutes), and pain with urination. It is not unusual for patients to experience nocturia and pain with sexual intercourse. IC is also known as painful bladder syndrome (PBS), particularly outside of the USA.
I am new to this group, I am happy to know I am not the only one going through this awful pain and not really having a life. This is my story , I have always had issue with pain and burning for about 3 years now. I have always thought I had UTI'S I do believe at times it was an infection but most of the symthoms I was getting was from IC. Everytime I went to my doctor with the complaint they tested my urine and said I had an infection. I took antibiotics what seems to be forever but the pain never got better and since I did not know any better I figured it was just that the antibiotic was not working. But then I was fuming , how can I be on so many different antibiotics and for so long a period I thought to myself This is nuts I am going to get ammune to antibiotics, it was then that I knew I had to be more aggresive and start telling these doctors to stop putting me on antibiotics and start testing me to see what's wrong. I was sent to one urologist which did nothing for me instead he sent me to a gastro doctor, I was thinking , this is nuts the pain is in the vaginal area not my stomach. From there I went to a different urologist , he did a urodynamic test and came back positive as far as incontinence , the urologist explain the procedure he can perform and might help with the pain.. It was a bladder life with a mesh put inside of me.. The first 6 months I felt like I was in heaven no pain or pressure I felt wonderful the best I have felt in years,, unfortunately that did not last, I had a mesh erosion and the doctor went back in to fix it, I still had the pain even after the mesh was fixed. I had to do my own research as to why I was having this awful burning, pressure and cramping. As I did my research on my computer I had the symtoms of Intersitial cystitis. I went to my GYN and told her this is what I think I may have, she did the potassium test and sure enough it came out positive.After she did the test the lidocream was wearing off and I was in tremendous amount of pain ( I have learn anytime they go inside I have flare ups).. I pretty much begged them to give me something to help with the pain, Well I had to stay and suffer with the pain because they refused to give me anything. The doctor told me she will do and instillation of Elmiron the following week and with me taking Elmiron 3 tims daily and the instiation the pain should go away. My first insillation was done about 1 month ago i was so excited about it because I figure I would be pain free, no way, I seem to have gotten worse. I had to go to the ER which the nurse and doctor had no idea about or how to threat interstitial cystitis , what a waste of a day.
Anyway at the GYN i was seen by a nurse practitioner but she was not very compassionate so I asked for a doctor , i am now seeing a GYN doctor she test me for other things to rule out and make sure it was only IC causing the pain and not something else.. She put me on medications and told me I have a bad case of IC if the meds don't work she would have to send me to a pain management doctor. The doctor also stopped the insitation as it was making me worst. I am still on Emiron 3 times a day plus nueronton, uribel and I started Tramodol a week ago although I am on all these medication I still have pain , they have helped a bit but not 100 percent. Is anyone out there still having pain? Are we suppose to be pain free or would we always have some pain? Its awful it has effected my quality of life and this is depressing me . My GYN seems to be compassionate but at the same time she lets me go on with this pain. I will not go to any other doctors as they seem to no nothing about this decease. It's so frustrating. Sorry this is so long I guess i needed to vent..
Anyway at the GYN i was seen by a nurse practitioner but she was not very compassionate so I asked for a doctor , i am now seeing a GYN doctor she test me for other things to rule out and make sure it was only IC causing the pain and not something else.. She put me on medications and told me I have a bad case of IC if the meds don't work she would have to send me to a pain management doctor. The doctor also stopped the insitation as it was making me worst. I am still on Emiron 3 times a day plus nueronton, uribel and I started Tramodol a week ago although I am on all these medication I still have pain , they have helped a bit but not 100 percent. Is anyone out there still having pain? Are we suppose to be pain free or would we always have some pain? Its awful it has effected my quality of life and this is depressing me . My GYN seems to be compassionate but at the same time she lets me go on with this pain. I will not go to any other doctors as they seem to no nothing about this decease. It's so frustrating. Sorry this is so long I guess i needed to vent..
Welcome to the group, I'm glad you found us and you definately are not alone. Tramadol doesn't help my IC pain either, and I took neurontin for the longest time, along with a muscle relaxer and something for anxiety. Still had pain, tho, so I weaned myself off all those drugs. They just made me want to sleep all the time. I was taking four and five hour naps during the day and still sleeping at night, and in pain when I was awake. Screw that! I did have pretty good results with amitriptyline when I was first diagnosed. But I've been on it for so many years, I no longer t get the same benefit for IC, but it did help my fibro symptoms. I stopped taking it recenlty because of side effects.
I was diagnosed with IC 18 years ago and not a day goes by that I don't have pain. When I used to get the cysto-hydro distentions or six weeks of DMSO installations, I would have breaks from the pain for a couple of years at a time. But the last few times I had those treatments done, there was no benefit. Now I eat pain meds daily, try to stick to the IC diet as best I can and when I'm desperate and the heating pad don't work, I use an ice pack AND I usually can get at least a little relief.
Remember tho, we are all different and we all react differently to treatments, so what works for one, may not work for the other. I hope to God that you find a treatment that will work for you. It can take six months to a year or longer for the elmiron to work. I couldn't tolerate the side effects it causes, but some patients swear by it.
I do agree that the IC diet is super important. But it's definately not a cure. It's pretty much a drag, but if it makes you feel better, at least a little, perhaps it's worth it. I hate hearing stories of doctors who refuse to treat IC with the proper pain meds. Everyone deserves to get relief. I have lived in several states where docs are afraid to write scripts for pain meds. It's quite sad that the drug seekers have made it so hard for us to get the help we need. My uro told me a doc who does not adequately treat IC pain with the proper pain meds don't truly understand the severity of pain that IC causes. There are good IC docs out there. IC is not an easy disease to treat since we all react differently to the treatment. There is much they don't know about IC, but there is much they are learning too. Hopefully, one day they will understand IC better and be able to treat it, maybe even cure it.
I wish you the best, keep us posted on how you are doing. Again, welcome to the group.
jae
6. Coconut oil (vaginal lube) @ bedtime. Make certain that you wear loose clothing. Go "commando" while @ home. When you feel pain flare coming on kick your feet up with either an ice pack or heating pad "down there".You will know what works best-trust me... Relax. It is so important for me to be comfortable these days. Watch your diet. It is best to Not consume anything acidic or spicy. Everyone has to figure what works for them. It is a complicated thing but after awhile I pray things will get better....txt me anytime....
soaks and foot massage. Hope this helps someone. Prayers