Interstitial Cystitis Member Introductions


#23

I have had IC for 10 years and the last few I have just been getting worse. It is nice to talk to people who know what you are going threw. Talking has helped get thew si much with my IC.
Bambi


#24

I want to find out what else I can do to ease the pain. I’m already taking Elmiron and was out of work a couple of months with this. I really need to find something. Does anyone know if the bladder wash helps or not???


#25

I am a 38 yr old wife, mother of 8 and grandmother of 1 who was diagnosed with Interstitial Cytitis after a couple of years of going to the doctor thinking I had a UTI or a Kidney Infection or a Yeast Infection. Finally an answer I couldn’t bear the pain anymore.


#26

Hello all. I’ve been living with IC for nearly 6 years now and manage by following the diet. When I first got sick, the pain made me change my life. Following the diet has helped me regain some of the control I lost to the disease.


#27

Hi there,

I’ve recently received a diagnosis of IC after having urinary issues and pain since February. I’ve also have Vulvar Vestibulitis for about a year and a half following a yeast infection that got things inflamed. I’m 23 and working on keeping a full life despite my pain. I work full time on a fellowship at the National Institutes of Health, I dance and am currently choreographing a commissioned piece for a local dance company.
I also have a twin sister (we don’t know if we’re identical or not) who does not have either of the above conditions.


#28

My family Dr believes I have this condition. I go for a scope on my bladder in a few days and also a CT scan…I have been suffering since the end of March.


#29

I was first diagnosed with IC back in the 90’s and opted for a surgery that allowed me to go in remission from re-occurring UTI’s and constant pain for about 4 yrs. IC has slowly crept back upon me and is now in full force again causing extreme pain and I have had 6 UTI’s just this year alone. I am going to a Urologist Specialist tomorrow for my first visit to discuss the possibility of an interstim in my back. Does anyone have an interstim? If so, can you tell me about it? I would appreciate anything else anyone might have to offer about pain management, etc. Thanks.


#30

I was first diagnosed with IC in the 90’s. I went through all of the treatments available at that time and then opted for a surgery that put me in remission for about 4 years. IC has not hit me again full force…I am in constant pain and am trying different treatment options again. I have an appt with a Urologist Specialist tomorrow to discuss the possibility of an interstim for pain management. Does anyone have an interstim? Can anyone share with me what they use for pain management, etc.? Thanks.


#31

I have been struggling with this condtion for years and want to find out the best tx- diet or medication Both?

Has anyone done the Sage Test? or is it just scam?

Hamster- because people tease me Ihave hamster bladder
I want to travel more- and not worry where will the next ladies room, WC, bathroom!!!

erica


#32

hi, my name is sharon. i just found out about 3 months ago i have ic. i wanted to meet some people in my area to talk about it. who also have ic.


#33

I am 49 yrs old and I am also grandmother of 8, 4 girls and 4 boys. I have been in a relationship with the most wonderful man for 7 years,we became engaged Christmas Day. I was visited by Hurricane Rita and am still living in a travel trailer and fighting the insurance company. I am fortunate enough not to be in a FEMA trailer. I bought my own and it isn’t as bad as it sounds. you really learn what is important. I was diagnosed with Interstitial Cyctitis today and I would like to get some info on treatments.


#34

I am a 24 year old woman who has not yet been diagnosed with IC. I am confident that I have the disease, but as it takes a long time for most people to be formally diagnosed, I am assuming that it will take me and my doctors a while as well. I would like to be able to converse with others who are suffering the same symptoms as myself, and I would like to learn more about the disease, its causes and what I can do to stave off the pain.


#35

I am a 20 year old single mother who suffers from IC and was diagnosed with it at age 12. I can’t really find any relief, and have tried hundreds of medications and treatments. I want to meet anyone who understands IC because not many people do.


#36

HELLO I FOUND OUT I HAD IC IN 2004 AND HAVE BEEN HAVING A DIFFICULT TIME SINCE THEN… BUT THE PROBLEM IS KNOW THAT I AM HAVING STOMACH PAINS AND I HAVE HAD BOTH A UPPER AND LOWER GI THEY FOUND NOTHING WRONG BUT I AM WONDERING IF IC COULD BE THE CAUSE OF THIS? OR IF HAVE ANYONE ELSE EXPERIENCED ANYTHING LIKE THIS PLEASE HELP. MY SYMPTOMS ARE UPPER AND LOWER STOMACH PAINS MORE LIKE A STOMACH ACHE OR SHARP STABBING PAINS, EXTREM NAUSEA, FATIGUED, BUT LACK OF SLEEP, IT DOES NOT HELP TO EAT OR NOT AND IT DOES NOT GET WORST WHEN EATING OR NOT . THEY HAVE RULED OUT CHRONS, COLITIS ECT…


#37

I have IC and want to know how others are dealing with the pain.


#38

My husband has IC and he has surgery evry 2 to 5 months to open the tube opening, strecth and scrape the bladder and instill DMSO. He will begin DMSO treatments in the doctor’s office next week and will have them once a month. I suffer from Migraine headaches, HPV Virus that resulted in Vulvar cancer.


#39

I have had IC for a little over a year. I am 56 and I am having problems getting it under control. I have the type with ulcers in the bladder and hemorrhagic areas. I turned down DMSO, and am on rescue treatments (which I had before), Vistaril, and just started on Neurontin.


#40

I am a 26 yr old that was just diagnosed with Inerstitial Cystitis along with Endometriosis. I am looking to learn more about both conditions.


#41

I have Interstitial cystitis for more than 1 year, cronic pain,changed my life in bad, and people are not supportiv,they think I have a mental problem.
I am 56 years old,I live along, I use to be happy with my life,until I gat Interstitial Cystitis…
Self education,books,intrnet,diets, and the doctors they…just tell you is no cure,immune sistem colapsing.
IS some hope ???


#42

Good evening
I am interested in ic because I have been diagnosed since 1996. I want to learn what others do for there ic.

Anyone that have ic