Dr Oz: Painful Bladder Syndrome or Interstitial Cystitis (IC)

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Dr Oz: Painful Bladder Syndrome or Interstitial Cystitis (IC)

By on April 25, 2011

Dr Oz: Interstitial Cystitis (IC)

Dr Oz said that women are ten times more likely to get Painful Bladder Syndrome or Interstitial Cystitis than men.  If you have a constant need to urinate, you experience pain when you urinate, and / or you have cramps, it may not be a UTI or Urinary Tract Infection like we so often think.  Doctor Oz said that these exact symptoms are also a sign of Painful Bladder Syndrome or Interstitial Cystitis.

Dr Oz: Painful Bladder Syndrome

Doctor Oz showed his Assistant-Of-The-Day a real bladder, so that she could see the different layers that make up this Dr Oz Painful Bladder Syndromevery muscular organ.  She said it felt thick, muscular and rubbery.  Dr Oz said that a healthy bladder has a protective lining inside called an Interstitial Layer, and when you have Painful Bladder syndrome, this layer breaks down which causes your bladder to get irritated and stiff (rather than being soft so that it can easily compress and expand).

Dr Oz did a demonstration to show how your bladder feels full faster when you have Painful Bladder Syndrome, which is why you have to urinate more often.  In fact, he said that people with Interstitial Cystitis sometimes have to go to the bathroom up to 60 times a day, which definitely does not sound like fun.

Dr Oz: Foods That Cause Painful Bladder Syndrome

Doctor Oz said that you first have to get the proper diagnosis if you have Painful Bladder Syndrome.  Your doctor should first rule out that you do not have a UTI or Endometriosis, both of which also can cause bladder infections.  Then, your doctor can insert a tiny camera into your bladder to check for inflammation or ulcers which could indicate that you have Interstitial Cystitis.  Prescription medication can help relieve your pain, but Dr Oz also said that you should avoid the following foods which can irritate your bladder: alcohol, citrus juice, rye bread and yogurt.  Surprisingly enough, Dr Oz said that cashews do not irritate bladders, so eat as many cashews as you would like (now you just have to worry about all of the fat found in them!).

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Comments to Dr Oz: Painful Bladder Syndrome or Interstitial Cystitis (IC)

  1. What is the scientific evidence that cashews do not irritate the badder as stated on the broadcast today? Also, how can you get cashews into the bladder? Seems like a urinary catheter would be the only way unless my understanding of the physiology is lacking

  2. Is there any way that a clip with this will be posted? I missed the show today, and having IC myself, I regret it and would love to be able to watch.

  3. Hi Gina! Unfortunately we are not allowed to post video clips of the Dr Oz Show, but lately Dr Oz has been posting video clips on his website several days after the show airs. When / if I see that he has posted the clip for this segment, I’ll be sure to post the link here!

  4. Stephanie Gamez says:

    Hi DOc Oz,

    I also have I/C and it’s a horrible illness that has no cure and takes your quality of life away. The pain is so horrible and many Doctors have no Idea how to treat it or to help us. We have a FB/IC site and there are so many women and men looking for help ans support for each other. There are some many of them would like to take thier life and we have had several that has done it. We hurt, depression, we feel lonely, We don’t leave our homes. Feel like we are crazy. We really need to get the word out about this illness and a help with a cure, There are so many of us living in pain/depression everyday and we really need so help with this. Please can you help me and my I/C brothers and Sisters. We also have many other illnesses that goes along with I/C. Thank you so much for listening to my story

  5. My name is Cher Bruin & I have Chronic Interstitual Cystitis (IC) along with my friend Stephanie Gamez, who wrote in as well. I am requesting a larger segment on IC. I have at least 60-80 FB friends who have it as well & counting. Please kindly listen to what ICers & myself go threw: Some people can change their diet & manage their symptoms quite well, while others are almost bed-ridden with chronic severe pain. I am in tears as I write this, I happen to be one of the chronic severe sufferers. I was diagnosed December of 2004 yet had symptoms years prior & possibly since I was about two years old. In theory was in remission until after I had my children. My symptoms include: Severe Pelvic Pain, Severe Back Pain, Scrapping insides out, sometimes stabbing pains, Migraine Headaches, Distended Tummy, Labor type pains, Sleepless Nights & Void up to 60 times in a 24 hour period. I have never had a remission since before my diagnosis. I have tried first & second line therapies in which failed me & the cocktails installed & hydrostistention with cytoscopy combined seemed to worsen my symptoms am under pain management currently which was not easy to obtain as doctors do not feel comfortable treating IC even though the quality of our lives, score worse than patients with some cancers & end stage kidney dialysis. Many Doctors do not realize is that all ICers are unique & what works for one patient, may not work for another. Also, as far as food sensitivities & the bladder, everyone is different. There is a substance called protomine & one doctor actually had it installed into his bladder as it mimics the symptoms of IC. He was wondering why all these women who complained of pain & did not feel it could be that bad. End result: He said that if he had to live with this kind of pain, he would surly commit suicide. Also, another study: found that Rats had the substance protomine installed into their bladders as well … End result: The Rats chewed their abdominal walls open. Please, sometime in the future, can you have a larger segment on IC? This non-maligment disease does not get nearly enough awareness & when it is discussed, it is always a brief overview. It would be an honor to receive an invitation to your show to shed light more in depth on first hand what a Chronic ICer goes threw. If not myself, anyone who would be willing to share their story? I know many people with IC that would be honored as well to share what they go threw on a daily basis. Maybe have a ICer with mild symptoms & another with severe symptoms? As I said: “We Are All So Unique”. With much Humble Sincerity … ~ Cher Bruin. #1-352-257-3837. Or 1-269-2667241. Thank You For Reading My Letter & All Other IC Patients Who May Write In. Kindly, We Need More Awareness. ♡

  6. I suffer from IC as well. I was diagnosed over 7 years ago, and not a day has gone by where I didn’t experience symptoms. I have an extremely limited diet as soon many foods irritate my bladder. I have tried more than 10 medications, physical therapy, several surgeries and procedures, have had medication instilled in my bladder, and have had injections in my bladder. I still suffer, but would suffer more if I let my guard down, ate what I wanted, and stopped treatments.

    The previous posters are right – this disease, as far as severity of symptoms and pain – ranks right up there with cancer. If I had cancer, I would get treatment for my pain, and sadly, there have been days where I’ve wished I had cancer instead of IC. I am mostly housebound, my relationships have suffered, and I am struggling to hold onto my job.

    Please, Dr. Oz, this issue is surely worth focusing on in your show. So many people have never heard of this disease – many of whom may even have it. From and awareness and educational standpoint, please bring light to this subject.

  7. Kerri Klimach says:

    Dr. Oz, I was diagnosed with Interstitial Cystitis merely two months ago. I went to bed one night without pain three months ago and woke up in the middle of the night feeling like I was going into labor. I have suffered from urgency for years, but the only pain up until then was from my endometriosis (controlled through birth control). I had to go through countless pelvic exams (which merely irritate IC), urinalysis, a laparatomy to check the endometriosis, a small bowel xray and a colonoscopy. I very nearly had a hysterectomy done out of frustration.

    Up until three months ago, I was an very active person: I exercised regularly, had minimal attendance issues at work and didn’t sit down normally until it was time to go to bed. I was happy. Now I spend the majority of my day lying in bed with a heating pad that I alternate from my back to my bladder. I should note that I am only 36 years old. I have missed 10 weeks of work out of the last 12 and the last time I tried to work (desk work), I had a hard time typing through the tears.

    I am trying all the recommended treatments, including physical therapy, with minimal results. I cry daily and am now being treated for depression and anxiety on top of everything else. I feel hopeless most of the time and alone. I mean, who would want to live like this for the rest of their lives? If I didn’t have my three year old, I wouldn’t have the will to fight this. Doctors don’t even give you anything for the pain without making you feel like you are a drug addict and yet people with cancer get to have a port in their arm for self dosing.

    It is sad but most doctors and professionals still do not know what IC is and what it does to the person’s body and mind. We need help, we need awareness. We need you. Please do more shows on this wretched disease so we can continue to try to bring relief to those who need it.

  8. Dr Oz I have Fibro and CFS and Hashis I use 3.0 mg of Low Dose Naltrexone for all auto immun issues, my bladder from my fibro was so bad before LDN, I didnt realize it was caused by my fibro issues until I read my new medical groups info on FIBRO, I thought I knew it all!

    Had to avoid all acid foods even tomatos!! Also taking Prelief you can get at a vitamin store sure helps take acid out of the foods you eat, kinda like Beano does for the gas in food. Try them!!

  9. The Rev'd. Jan (Waples) Olandese, M.Div., B.C.C. says:

    Dear Dr. Oz:

    I’m writing in concert with others to urge you to consider a longer and more meaningful discussion of a critical health issue affecting millions of men and women: interstitial cystitis (sometimes called painful bladder syndrome). Neither name is very good…the idea of a ‘syndrome’ suggests something the patient can fix by ‘thinking positive’ ….and “-itis” sounds made-up…. IC is a disease. It’s unknown what causes it and there is no fix, although some patients have, by experimenting with herbal remedies, raw foods dieting, juicing, and other modalities, found remission or partial remission of their symptoms.

    Interstitial Cystitis (Painful Bladder Syndrome) is an excruciating, painful, and incurable disease. The patients are often treated disrespectfully by medical practitioners, perhaps because so many women have the disease (although a growing percentage of IC patients are male). Patients in pain who are dissed by the medical community are vulnerable to healing from those who promise them the world but whose claims are questionable…if you hurt, you are open to anything which will stop the pain.

    A doctor I know told me that he was sorry for me…that doctors didn’t like IC patients because they are frustrating: the physicians cannot heal them. As a board certified chaplain I have worked with patients who feel terribly discouraged, not only because of the painful/endless nature of the disease, but the insensitivity of (some of) the medical staff who treat them as if they’re merely suffering from “PMS” or are hysterical, or drug-demanding, or should be in a psych unit instead of a medical one….trust me, it’s a very physical disease with often severe emotional repercussions.

    Bladder pain is very, very real. Unlike other ailments, it’s embarrassing to discuss and people who haven’t experienced the severe pain often imply that IC patients are hypochondriachal, negative whiners….in fact, we are just like you except our bladders hurt. Imagine having a very painful UTI….all the time! Some people experiencing ‘flares’ or severe phases of the disease, have extreme urgency/frequency and pain all the time….they need the toilet continually….it hurts to urinate and it hurts afterwards.

    There is NO CURE for this awful disease. Patients are tempted by all kinds of natural remedies, herbal claims (some of which actually are more effective than the one medication the FDA approves specifically for IC, Elmiron, which is very expensive, has awful side effects for many of us, and is supposed to help only 1/3 of patients. As a result of joining IC pages on Facebook I learned that many patients, unlike me (diagnosed at age 55), struggle with this from childhood or adolescence. The medical approaches appear medieval at best (self catheterisation…or instillations which cause more pain than ever for many…or nerve blocks…or even removing the bladder surgically (how much one must hurt to even consider that option)….which often solves nothing because the patient continues to feel the pain…. interstims, devices implanted in the patient, which help some and don’t help many….all these therapeutic approaches can be fraught with difficulty for the patients and often make the condition worse, or create other problems.

    As a chaplain, I understand that IC is accompanied by a huge component of emotional/spiritual weight for the patients as a result of the ongoing pain and lack of viable treatment options and the difficulty in finding physicians and specialists who take them seriously and are willing to work with them to find healing. Experiencing ongoing pain is not a desirable outcome for any patient (nor should it be acceptable to that patient’s physician).

    This disease is well worth a serious and meaningful discussion and examination on your show. I hope you will consider covering it sometime for the sake of so many men and women who suffer so much from IC. Helpful avenues to cover would be new approaches for healing, new treatments, and how to cope with the emotional and/or spiritual pain which accompanies the physical pain. Greater awareness of this terrible disease is desperately needed so that more research can be done and more options made available to those who suffer from IC.

    Sincerely,
    Jan
    The Rev’d. Jan S. (Waples) Olandese, M.Div., B.C.C.

  10. Hello Dr. Oz:

    Thank you for your short segment on IC. I, too, would love to have you do a whole segment on IC, possibly looking at history and it’s pain was considered exaggerated even though cystoscopy was available in the early 20th century and demonstrated definite abnormal findings. Because of a lack of understanding of the nervous system, male doctors insisted it was obvious the pain was “all in their heads” (that is where pain actually is for all of us) because after bladder removal as a last resort the women would still complain of terrible, unending pain.

    You could also look at more recent treatment offerings, multi-modal therapies and possible upcoming treatments and research for better testing and diagnosis. You could consult the ICA (Interstitial Cystitis Association) and ICN (Interstitial Cystitis Network) and have their leaders introduce support options to women who might not yet have found them.

    You could also point out research that suggests many “chronic prostatitis” patients are also likely to actually be IC patients and that the fact that IC was always a women’s illness was a fallacy.

    Honestly, maybe it’s just because we live with it every day, but most of us believe a whole episode regarding interstitial cystitis is not something that would be hard to fill up.

    Thank you.

  11. Trieste Kay Barker says:

    I was DX April 08 with IC. I was married Feb 08.A great way to start a marriage. I am 47 my husband is 42. I am now on Disability because I can’t stand long. Can’t even do the dishes. I now have to Cath 5 times aday. My bladder has swung the other way now. It also has affected my BM’s. I also along with the IC, Fibro, MVP, and PFD. The PFD is now messing with my BM’s. I am unable to do things with my family. We always have to make plans around what I can do. Went on a 2 mile hike, feel. By the time we were just 1/2 mile I was unable to walk, I had to take very small baby steps. If my husband could of he would have carried me out. But the meds make you gain weight. I wound up in the hospital for 3 days after that. Lost the use of my right leg for abit. I am a Veteran and use the VA. They are not informed about IC. When we were married I was 125 now im at 170. It is not fair to my husband and family. There are times when I have thoughts that I shouldn’t have. IT’S NOT FAIR FOR MY HUSBAND. I hate this Interstitial Cystitis (Painful Bladder Syndrome) is an excruciating, painful, and incurable disease. The patients are often treated disrespectfully by medical practitioners, perhaps because so many women have the disease (although a growing percentage of IC patients are male). Patients in pain who are dissed by the medical community are vulnerable to healing from those who promise them the world but whose claims are questionable…if you hurt, you are open to anything which will stop the painBladder pain is very, very real. Unlike other ailments, it’s embarrassing to discuss and people who haven’t experienced the severe pain often imply that IC patients are hypochondriachal, negative whiners….in fact, we are just like you except our bladders hurt. Imagine having a very painful UTI….all the time! Some people experiencing ‘flares’ or severe phases of the disease, have extreme urgency/frequency and pain all the time….they need the toilet continually….it hurts to urinate and it hurts afterwardsThere is NO CURE for this awful disease. Patients are tempted by all kinds of natural remedies, herbal claims (some of which actually are more effective than the one medication the FDA approves specifically for IC, Elmiron, which is very expensive, has awful side effects for many of us, and is supposed to help only 1/3 of patients. As a result of joining IC pages on Facebook I learned that many patients. The medical approaches appear medieval at best (self catheterisation…or instillations which cause more pain than ever for many…or nerve blocks…or even removing the bladder surgically (how much one must hurt to even consider that option)….which often solves nothing because the patient continues to feel the pain…. interstims, devices implanted in the patient, which help some and don’t help many….all these therapeutic approaches can be fraught with difficulty for the patients and often make the condition worse, or create other problems IC is accompanied by a huge component of emotional/spiritual weight for the patients as a result of the ongoing pain and lack of viable treatment options and the difficulty in finding physicians and specialists who take them seriously and are willing to work with them to find healing. Experiencing ongoing pain is not a desirable outcome for any patient (nor should it be acceptable to that patient’s physician).

    Interstitial Cystitis (Painful Bladder Syndrome) is an excruciating, painful, and incurable disease. The patients are often treated disrespectfully by medical practitioners, perhaps because so many women have the disease (although a growing percentage of IC patients are male). Patients in pain who are dissed by the medical community are vulnerable to healing from those who promise them the world but whose claims are questionable…if you hurt, you are open to anything which will stop the painThis disease is well worth a serious and meaningful discussion and examination on your show. I hope you will consider covering it sometime for the sake of so many men and women who suffer so much from IC. Helpful avenues to cover would be new approaches for healing, new treatments, and how to cope with the emotional and/or spiritual pain which accompanies the physical pain. Greater awareness of this terrible disease is desperately needed so that more research can be done and more options made available to those who suffer from IC.

  12. Trieste Kay Barker says:

    I want to thank The Rev’d. Jan (Waples) Olandese, M.Div., B.C.C with the words from her post. I used some of her comments. There are many times that I have had some memory loss. I can’t remember simple words. I know I should know the word but can’t get it out. It is from all the meds I take of my IC.

  13. Nicole Cook says:

    Hello, I am a 28 yr old married mom of 3. I was always the healthiest a woman could be up until 10 years ago. Thats when i discovered i have costochondritus, which is minor in comparison. But 6 years ago I started having serious problems after an IUD preferated my uterine wall, I discovered later on that an adheshion had grown and i ended up goin in for surgery to get it removed in 2009. i felt great afterwards, until bout 7 months later, when I started having serious pain in my pelvis, I went through 12 er visits in a 4 to 5 month period due to the pain. I saw 6 dr.s about it and it wasnt until just last year, 2010, that I was diagnosed with IC, a severe case of it. It is now under control with medicawtion and diet, but unfortunately I just found out I have an extremely painful condition called adenomyosis, which is causing my urterus to become extremely enlarged and is causing the lining to grow into the uterine wall. I have all but lost my sanity from all this, I am currently scheduled for a hysterectomy in early december. I am at my breaking point, I still have another condition that has been undiagnosed, I think I may either have celiac or a aserious allergy to gluten. my question is why? Why am I 28 and so unhealthy? What do I do? Help???!!!

  14. Naomi Watt says:

    Dear Dr.OZ,
    I have IC, found out in January 2010 that I have it. It is very painful and horroble disease. We need a cure.We need to get awareness out there so people know what we are going through. I used to take the little things for granted but I sure don’t anymore.I’m a sinle mother of two young boys. I miss being able to do all the things I used to with them, but because I am in constant pain because of IC I can’t do it all anymore. It is hard.I used to be active and healthly. I’m on ly 31 years old and I can’t work because of IC and major anxiety. IC changes you and your life.Friends and family don’t help or even try to understand so I’m alone in this except the lovely IC woman I’ve found on Facebook that I can relate too. Please help us get awareness out, we need help .

  15. Elizabeth Axe says:

    Dear Dr. Oz- I’m 28 years old and I have IC. It took me 5 years to be properly diagnosed. After seeing countless doctors and receiving endless UTI tests that came back negative, I believe that people, and most importantly doctors need to be informed about this disease. It is painful, it is real, it is an awful,lonely experience that people should not have to go through misinformed. I have lost friends because people either do not understand, they do not believe me, or they do not care. Why should people have to remain in silence just because their pain is invisible? Please help spread awareness by airing a special on IC, It may help someone be diagnosed before their bladder lining is completely destroyed…like mine.

  16. Dr. Oz, I am 19 years old and was properly diagnosed in March 2010 after being misdiagnosed for over five years. Because of this disease, I have not only had to give up things that I have worked so hard for, like a full ride college volleyball scholarship, but I have had to deal with multiple issues that come with IC at such a young age. I’ve gone through many different medications and treatments that did not work at all and this month is my 7th month of having the InterStim inside of me. It’s very unfortunate that I, as well as so many others, have to deal with the many complications, side effects and multiple diseases associated with IC. Though I have suffered a great deal, I see IC as a sweet sorrow. I know I have written to so many other doctors, newspapers, news networking shows and others who did not even care to accept IC as an important issue to help spread awareness about. I appreciate your short segments about IC along with other diseases that we can all relate to. Because this disease has made me go through such difficult times, I am now back in college studying Pre-Med with plans of transferring to a very prestigious med school to get a Phd in Urology and specialize in Interstitial Cystitis. I feel that this disease has not been given the right amount of research that it deserves and it’s my personal goal to change that. People should never have to suffer to the point of not being able to get out of bed and enjoy their lives.

  17. Harlee Aplin says:

    Hello Dr Oz, My name is Harlee and I’m 27 years old. I was just finally diagnosed with IC a year ago after over six years of misdiagnosis and mistreatment by doctors. I’m a mother of two little girls, one who is eight and one who’s 18 months. They are my entire world, but this disease has robbed me of the chance to be the mother I always envisioned myself being. I can’t pick my baby up and play with her, or take my oldest to the park. I have even missed my oldest receiving awards because I couldn’t get out of bed. I’ve been married to my amazing husband almost three years, but this disease puts such a strain on our relationship. It’s near impossible to be intimate because it hurts so bad we are both afraid to even try. Many of us do our very best to get awareness out there, so that people understand we may not look sick, but even on our best days we deal with pain most couldn’t. We are strong people, who only want a cure for this horrible life stealing issue. Thank you for being one of the few doctors who even acknowledge that this disease exists. A group of us have a saying, IC Hope!!! And we all do, even if it may be 10, 20, 50 years in the future, we all live with hope that ONE day we will be able to be rid of this, and get our lives back.

  18. Tom Lavender says:

    I am gonna start by stating that I am a male. OK. I will also state I did not view a show where you had talked about IC. Regardless, I was diagnosed back in 1997. OK. I did not go to the urologist complaining of pain, but I was still diagnosed by cystoscopy with hydrodistention after being told my prostate must be inflamed and being on different antibiotics that did not do me any good. In fact, I have not gotten much relief so far. I was noticing you had mentioned females are ten times more likely to get it. By the way, I was told 90% females and 10% males in 1997, but statistics can change. Besides, I have seen 70%-30% somewhere by now. Yep! I do know many males have got IC, even though I never see many on any IC support group on the internet anywhere. At least, I have done my share of venting and ranting on different groups by now.(and will continue to) I can’t get the interstim because my lower back is scewed up. MRI was showing degenerative disc disease and spinal stenosis 3 days before last Christmas. In fact, I have not worked ever since last November. Oh, yeah! I am on retirement disability as I was a custodian at Georgia Southern University over 15 years, but I was denied the regular disability by now. I am waiting on the appeal. Why isn’t there more coverage on IC? Come on. So many people know about cancer and some other medical conditions and chronic illnesses, but many people in the medical field don’t even know what Elmiron is.(or used for) (or think IC is not too serious) Yeah, right! It has ruined some peoples lives by now. Some people just don’t understand. Some don’t care. I am not cutting any corners right now. I don’t like IC at all. I will copy and paste now. You said you are disabled because of interstitial cystitis, degenerative disc disease, neck and back pain, neck fusion, balance problems, falls, and you walk with a cane. The medical evidence shows that your condition or combination of conditions is not severe enough to be considered disabling. The evidence does not show an impairment that would prevent most work-related activities. It has been decided, therefore, that you are not disabling according to the Social Security Act. OK. I stated I aqm waiting to hear back about the appeal; therefore, I will let that be all now.

  19. Sarah Smith says:

    Hello my name is Sarah I was diagnosed in 2007.. I had just had a hysterectomy bc I had a huge mass on my uterus also I have endometriosis.. After recovery from this lastajor surgery. I was still in excruciating pain my gyno sent me to a Urologists Dr. Forrest. I was only 27yrs. Old. Devastated, scared.. I had bladder surgery and was told I had IC.. I had was stunned! I instantly was on Elmiro, instills, pain meds.. I have been a emotional rollercoster ever since. Elmiron never helped me. Instills just flared my bladder. So, far nothing helps me.. I have changed my diet and living on oat bread and bottles spring water.. I was starving!! Now, I’m still trying new meds to see what will help me… My kids pray that I will get better everyday. They are scared that they might get this disease. I pray that they don’t. It’s getting harder and harder to go to work when my body just want to give up. The pain of this disease is excruciating it is compared to the final stages of renal failure. I urge you Dr. Oz to please look and read all these stories about IC and how it Destroys people’s lives, marriages, careers, children’s.. It is a horrible disease and we deserve a cure or even proper treatment!! I thank you!! We really need to find some help before more IC suffers take their lives. We have to breathe more Hope

  20. michelle krieger says:

    Dr. Oz,
    I also have Interstitial Cystitis and it is a horrible painful disease. I am one of the lucky few who has found treatments that work and doctors to give me the meds I need. I ask that you do a show on this devastating disease on behalf of my IC friends who cannot find relief or doctors who know what they’re doing. I spent the first 2 years of my diagnosis in physical therapy and that helped tremendously. But the key for PTs is that they have to work on loosening those muscles before having IC patients do exercises. Those just make every thing tighter and more painful. Please bring light o this disease as there are many suffering.

  21. I have suffered from interstitial cystitis for 20 years. My website listed above tells my story and what I went through. I lost my job, many of my friends and my life. There are too many people suffering from IC to ignore it. Please do a segment on your show.

  22. Vicki Sprenger says:

    I was diagnosed with IC 4 years ago. As others have written, this is dehibilitating. Not knowing why my first interstim stopped working, I received my second and last, interstim a year ago. It is embarassing to live every day with IC. No “pitty” parties….just help make IC more aware and maybe one day find a cure!:)

  23. I’ve had IC for more than 20 years. It has effected my professional live, my family life, the love of mylife. It limits my social activity, I’ve become an observer of life rather than a participant in life.
    Some medial research looks promising towards finding a cause of IC, perhaps leading to better treatment, but funding from a federal grant to the ICA via the CDC has been cut due to federal budget cuts, we need to encourage research, we need to find a cause and a cure.
    How can you help? More information to the public helps raise awareness of this disease and how it affects lives. A special on your program influences many and informs friends, and family of the seriousness of this disease,and perhaps encourage donations for research.
    Thanks you for this opportunity to express my thoughts.

  24. Jennifer Cochrane says:

    Just this last monday my uro told me i had the worst case of IC that he has EVER seen in his 17 years of treating IC. Aren’t I lucky!

  25. Heather Severin says:

    I am 42 yrs old & have been dx w/ severe IC two years ago. My life is Hell. I have an amazing husband & two beautiful daughters who are 10 & 6. My ability to be the partner,wife,mother,sister,daughter & friend I am supposed to be are gone. I can barely get out of bed because the pain is sooo bad. I am in level seven pain EVERY day & nine on my really bad days.

    I am so sick of suffering & knowing that I am negatively effecting my family by being unable to attend family functions or do anything fun.

    My nausea from the pain and IC have caused me to go from a healthy 120 for my 5 ft 4inch frame to 98!!

    Please do a show fully devoted to IC & how it affects us & our families – I know you will have plenty of us willing to be on the show.

    Thank you – God bless.
    Heather Severin

  26. Tom Lavender says:

    Dear Santa
    I want to be cured of IC. Oh, yeah! I am not sure that would make sense to many people.(including Santa)Regardless, it simply means I want to be rid of this medical condition/chronic illness that keeps causing me to have to urinate so much.That would be good. I also want to have a pain free day.(the first one of the year) In fact, I want to be able to stand up straight and not have to turn on the heating pad at all. I don’t want back and shoulder pain, as I also deal with degenerative disc disease, to get in the way of Christmas at all.
    I want to be able to be jolly and not end up being a “Scrooge” and/or ruing Christmas for someone else. Also, I want to be able to have proper energy and not have to keep napping so much. I want to be able to enjoy life and to be able to have “fun” more often. (as in feeling normal) OK. I want to get approved on disability as well.(denied and appealing by now) Wait a minute now. I know I am not dreaming now. I know I did not bump my head as well. Why is my Santa list so different with parts of it being unrealistic? Maybe all the pain that I currently have has got me all delusional. OK. I guess I will just say”Merry Christmas” and that Jesus is still the reason for the season. PS Santa …Many more people want to be rid of IC as well

  27. Rhonda Holt says:

    Dr Oz, I am 45 and have had chronic IC bladder disease for 15years now, My doctor says its the worse care he has ever seen.. I have had 2 distentions and my bladder has deteriorated down to 150cc and is now at a hemorrhagic stage and has taken complete control of my life..I am now to the point where I live with consistent infections which has moved into my kidneys and pain is more then i can bare, I have not had it taken out and its the last resort as the Doctor specifies it will only make me more sick and have many more painful issues.. I have urethral stinosis as well.. I am now a prisoner is my own home, I do eat very healthy and try to work out when i am not in pain, My immune system is shot and i get flues/infections all the time and have a ER visit at least once a month now.. I am in chronic pain and do go to a pain clinic and they are great at being to helpful in controlling the pain..Living with this illness if horrifying and I wish it on no one, but those of you who have it i feel for you and wish i could help in someway as well as have your support and love and would love to hear more about how you deal with your IC and what other health issues have you had arise as i have had many.. My heart goes out to you all and I would love to hear back from anyone who suffers with this debilitating illness and pray for hope, happiness and a life around living with this debilitating illness..Sincerely Rhonda Holt Springville, Utah

  28. Dr. Oz,

    I was diagnosed with Interstitial Cystitis two years ago and have been in tears for a good majority of those two years. I was actually doing better within the last 8 months, even after my open-heart surgery 4 months ago at the age of 39 (due to a congenital atrial septal defect). However, after hearing about Raspberry Ketones on your show last week and trying two pills only, my IC has flared up beyond belief after 8 months of “remission”. It should have been mentioned on your show that women (or men) with Interstitial Cystitis should NOT take Raspberry Ketones as it may aggravate their already painful condition. So many people ran out and bought Raspberry Ketones as your word is pretty much God all over the U.S. and I bet that many of the people who bought these pills suffer from IC and are in massive pain right now. Losing weight is great but not when it causes IC flare-ups!

  29. Sheri Westover says:

    I too have IC. I have it to a severe degree and was approved for SSI immediately because of it. It took years for the dx. For many years I was accused of faking the severe pain for pain meds. I feel drs should be required to learn more about this disease because many of us have been accused of being pain med seekers before being dx with IC. The pain of this disease is compared to cancer pain. Drs need to be aware of this so we can be treated better during severe flare ups that land us in the ER. Thankfully the hospital I go to now understands the pain and treats me for it when I need to be.

  30. Rhonda Holt says:

    To all the IC patients who are suffering this debilitating illness.. I too have this and mine is the rare stage that many do not get to..I am in a hemorrhagic stage and my bladder is the size of a golf ball, and only holds 150cc fluids making me have to urinate on the hour..I have to use a Cathe each time now and its moved back into my kidneys now.. The epithelial cell layer is now in going through a change into a carcinoma stage.. I have no immunity left at all and live very sick and can not go anywhere..This has a terrible grip on my life and its been 15 yrs since my diagnosis and I never thought it would get to this stage.. I know there are alot of good supplements out there even a few DrOz has mentioned has helped me.. And yes there are some we just can not take or it will cause major pain.. I hope they find a cure or something but for now I feel for all of you and my younger sister too has this terrible bladder disease but has not hit to my stage.. I pray for all of you that you never get to this stage of this terrible Bladder illness.. They are now treating people at pain clinics for IC and have many ways to help make this a little more easy to cope and live with..I have had to learn what vitamins and herbs can be takin and what foods I can eat. But there is so many foods we have to avoid and herbals as well if they have anything in them that might burn or hurt when dissolved so when you order them i always ask and make sure I know what is in them.. I too bought the Keytones and did not know they would cause pain..My husband put some on his tongue and said it was hot and burned then it went numb..So that says it all that us with IC can not take the keytones and I do hope Dr OZ will have a special IC bladder show and help us all to know what we can or can not eat and maybe he can find some things that will help us as well.. I would love to be a part of that show and have some of you on there as well.. This needs to be known and talked about because so many do not know about this debilitating illness..And we need to get the word out and let others know what to watch for with there bladders and when to get into a urologist to be tested so it can be caught in earlier stages so others do not get to My horrible stage…I pray for all of you and Ask DrOz to please look into this and have a special show on IC Bladder disease..I wish you all the best and do hope he will present a really good show that could help so many before they get to my stage.. I have had all surgeries and taken all medications for IC Bladder disease and now I am to a point that nothing works and only makes it worse and I now go to a pain clinic to find hope and relief to live a better quality of life…

  31. vicki crumpton says:

    Dr. Oz, I have had IC since I was in my 20′s…Im 56 yrs old now.. If it werent for my children and an understanding husband, I probably would have taken my life years ago…The pain, urgency, frequency and depression is so overwhelming. Please devote an entire show on this debiilating disease that has made our lives a living hell. Thank you!

  32. Amelia Rate IC says:

    I hope to see future coverage of IC on the Dr. Oz show. It is a completely debilitating condition that is under-publicized and underfunded. It also overtaking millions of lives and the medications available have paltry positive effects. The quality of life of IC sufferers has been compared to those suffering from late-stage renal failure. I remember the date and time my IC struck: 9:30 PM on October 19, 2010. That moment of lancing pain through my urethra is burned in my brain, along with many hospitilizations due to unhelpful medications that were supposed to alleviate my IC symptoms. I eventually had to leave work and school and move back in with my parents. Slowly, I am getting accustomed to IC, not better, but accustomed. I still hope that I can go back to school someday and get my PhD or JD. My fear is that even if I manage to complete an additional degree at a reasonable pace that allows me to care for my IC, I will still not realistically be able to work in my field or ever support myself. When other little girls dreamed of their wedings and husbands, I dreamed of my career. I still try to retain my personality, although I’m not as bubbly as I used to be. I still try to run twice a week, even though I can no longer run faster or further, no matter how much I try. I’m trying not to let IC turn the rest of my life into a 15-minute mile, and I hope that—through the Dr. Oz Show, other awareness outlets, and a marked increase in IC research and funding—I will someday increase my mileage again, in running and in life.

  33. Amelia Rate IC says:

    Please excuse minor typos in comment above.

  34. Rhonda Holt says:

    Well said Amelia!! Thank you for kind and caring compassion..We truly need to support each other and I do hope Dr OZ does do a whole show based on this terrible life debilitating illness..And we whom know what it is like to have it, I hope we get to be accompanied on the show to share with others and reach out to give other IC suffers Hope! I do pray you all have many pain free days…~Rhonda~

  35. Low Dose Naltrexone (LDN) has been used for IC, research it on google type in LDN and IC
    LDN helps many autoimmune illness’s. I use it for Fibro/CFS with success, I dont have my life back but a lot of it coming back slowly, now a year on LDN I have about 75% of my life back, the pain is all but gone just trying to get back my stamina!!

  36. please do a show on interstitial cystitis; the disease destroyed my life. I have met many women and men suffering from this disease who need reinforcement that they are not alone.

  37. Rhonda Holt says:

    Dr Oz.. Many of us reaching out to you for help! It would give us all who suffer with IC such great hope.. There are many things you have helped with and tried to reach out too and this IC we suffer from needs some of your direction and your kindness and compassion.. We all love and admire what you do for others..Please do a show on IC, and all those illnesses that can follow and what it does to these peoples lives…Any one of us would love to be there on the show to help explain what we are going thru and what others need to do to protect themselves and keep there bladders healthy before its too late and they now will suffer the rest of their life’s with this debilitating disease… Thanks you!!

  38. Rhonda Holt says:

    Hi I wanted to know if anyone on this group has had issues with the tumeric powder bothering the bladder like the keytones has done.. I tried that one and it too has caused bladder burning and pain from the thermogentics or so called heating your body up so it causes us to lose more fat..totally makes sense that it would be beneficial to some, but us with IC have to really watch what we put in our bodies because it can cause even more pain.. And knowing spices and or foods with high acid or a burning sensation will only hurt us in the long run.. Knowing they are really good for us but us with IC can not have them in our bodies is very frustrating.. I have found that Holy Tea has really helped me out and I have found more benefits from it and had no issues of pain or problems only benefits..May be something to try or you can ask your doctor about it.. Mine found it just fine..Hope everyone is doing well and we all are trying to push a important show on IC…It would benefit so many and help those who do not know they have it but are showing all the symptoms.. }i{ugs to everyone!

  39. Tom Lavender says:

    What are we supposed to do? I keep getting told to take Elmiron, but I have never been impressed with it. It was supposed to be a big thing, but you will never see a commercial about it at all. The success rate is not good enough. So many of us are suffering in more ways than simply peeing more often and feeling some pain. Come on. I am very thankful I still have the same insurance that I did with my last job. (as I went out on retirement disability) Of course, some IC’ers don’t have insurance currently. (doctors and medication bills) (including several doctors for some of us since we keep getting another freaking diagnoses)Some are out of work due to IC. Also, I know we actually got people with degrees, like nursing and teaching, that have had to stop being employed due to IC.(and sometimes a combination of health issues) OK. I don’t know how many in the groups are on SSD, or are trying to be, but it can be a paycut for many people. Hello! Geez! My lawyer has got a client that has to sleep in the vehicle sometimes.(ridiculous)There are some illegals living high off the hog right now. Imagine no IC Yeah, right! All we can do is imagine because we may croak without being cured first. Who is really working on trying to figure out IC right now? I would get more attention if I was sitting here with a broke leg right now. I would not doubt it. Yep! The word “cancer” is more well known, but some cancer patients get chemo and go on to live a normal life once again.(Thank God) I don’t feel all too “normal” right now. I slept good,but I don’t feel like it too much. I can’t even stand up straight. That would be because of degenerative disc disease. At least,I stopped taking the Carafate.(not something for IC) (as I had been messed up more since being on it)It was giving the “zombie effect” to me.(with drowsiness a side effect)I did notice it can cause sleep problems sometimes, too. That did happen one night as well. I couldn’t even get a nap at all.(which I am good at taking naps) Does Dr. OZ really come on here and see all of our posts? OK. I have got to be going back to the bathroom once again. bye

  40. Rhonda Holt says:

    Hey Tom, so sorry what you are going thru! I never here from a man who has this..But i know its suppose to be horrible and more so then a woman.. There is a website called MDJunction and so many ICers on there and so much support.. I do hope you join and hope you get feeling better.. I have stage3 Hemorrhagic IC and its been 15yrs and I am so sick now.,,Its destroyed my immunity and now my kidneys are have major issues.. I just want to curl up and die! I am so sorry any one has to suffer from this.. I have only seen one show on DrOz about this and its what is on here basically.. Was not much of a huge show but it was ok.. I think IC is really debilitating so many now i do hope he does read these and has a show..So many of the foods and herbs he mentions we try and find we can not take it.. I have to send back a few from it causing bladder pain and burning along with a dizzy feeling.. So we all can not enjoy the benefits of these herbals and i pray Dr OZ read this and will do a new show and will let some of us come on there to tell all just what we go thru.. I am at a time with IC where its as bad and painful as #rd stage renal failure.. Its taking my life away and I now am a prisoner in my own home.. I do hope many of you try to go to MD Junction! You will find so much Support in the IC support area, and it has so many more support groups that are amazing..We are not alone but sure feel like it….All my love to IC sufferers ~Rhonda~

  41. Laura. Hinojosa says:

    My story mirrors all of yours. I was diagnosed in1998 after a promising Junior year at the University of Texas At Austin. I barely finished, attempted suicide eventually and was put on copious am mounts of narcotics. I stayed in my home to die after spending ally and my extended families money on surgeries. I have a nuero sacral implant that helped for a while but is now turned off. I was on so much narcotics I had to go, through Painsmahement, and by my choice to a facility-rehab, although my addiction was only phyisical. I’m now now on small dose of medications and was able to have two children, never thought possible. I’m still miserably in horrible pain and agree with the other contributors. Something must be done. Dr.Oz be brave help us to help ourselves. Shine a light on this malice beast that hides in the closet. We must expose this insidious creature to the world and maybe then the drug companies and doctors will stop thinking we a delirious attention seekers and instead help us to end the pain! Anyone who needed a shoulder- contact me, we ate all we have.
    Laura Hinojosa lolohinojosa@gmail.com. I’m tired of this thing running my life.

  42. Laura. Hinojosa says:

    I apologize for the SUPER LARGE amount of typos. I wrote that in the middle of the night on the potty. Lol.

  43. Jennifer Neely says:

    Unfortunatly I am also a chronic sufferer of I.C. I turned 27 years old this
    Year & 7 year ago I was diagnosed with endometriosis. After the Laproscopic
    surgery the pelvic pain continued, after jumping through many loop
    holes & im sure you all know exactly what im talking about I was saw
    By an amazing Physician where I learned about IC & was then diagnosed.
    I had to drive 3 hours every week sometimes twice a week for tx.
    At that point I was able to get some relief after about 6-8 monthes but th
    Flare-ups continued.
    All of your stories sound so familiar!! For I have lived through it as well
    the: physical therapy, Heparin Cocktails instilled into the bladder, pain mgt,
    the Laproscopic surgury & cysto w/hydrodestenstion, tons of ridiculously
    Exspensive medications. & I was scheduled for surgery the end of last
    Year but when we called to check with my Insurance Companies…
    the one that the office had been billing kicked every single bill out
    Making me responsible for: $4700.00, & im working my butt off trying to get the other
    Ins Co. to pay. So I didnt get surgury, in which the doc said I needed* because I owe the office
    Money. I am denied treatment until the debt is paid in full. Stress I have noticed over the
    Years really plays a role in triggering my flare ups along with everything else apparently such as breathing air :) I mean ive tried everything & I just dont know what to do.

    I have many restless nights, I feel the urge to urinate, however its just a little tinkle
    & mostly very painful inside of the bladder. Sometimes I go days without even
    Being able to urinate so I have to rely on a self-cath. I often feel feverish, weak, & very tired. There have been times that ive been in bed for months at a time & drank Emergen-C praying to feel lively. My Heating Pad, & Rice packs are my Best Friends!!
    I wish so badly More Education & Awareness would come to the Surface. I feel all Alone, & like im fighting this battle all alone. I work in the Medical Field I love my Job & mostly I love helping my patients, I cannot imagine not trying to provide the best for them. I feel like there should be something out there for us!! I suffer from what is known as the Evil Twins…
    Interstitial Cystitis & Endometriosis & most don’t even have a clue about it.
    Ive been to the E.R. after working a 12 hr. Shift I couldnt stand up straight to even walk, & I couldnt pee, the E.R. Doc told me it must be a structural thing!!
    I think AWARENESS & EDUCATION is very much NEEDED.

    Thank you all for your stories & for listening,
    May God Bless Each of you with better Health!!

  44. Please Please Please, Do a full show on the reality of what Interstitial cystitis/painful bladder is really like to have. Most doctors are clueless. They see a short segment or read a small article and have no idea what I.C. is really like. Have an entire audience of IC patients and you will find out. I ran a regional support group and have done as much phone support as I can to be there for others when they are in a major crisis. You have no idea how debilitating this disease is, Being bedridden most of the time. Unable to be a decent mother.father, wife/husband, friend, because IC is a Thief and Steals our lives. the pain is so unrelenting and severe. Not to mention the frequency. Over Active Bladder doesn’t even compare. I know a man that has had two open heart surgeries, He said the pain of IC is so much worse. I know of two women hat have had stage three cancer, they say the IC is so much worse. I know a woman and a man that both broke their backs in several places, they say the IC is so much worse!!!! What can the IC community do to get you to have a show about the reality of this often misunderstood disease and how it truly affects millions around the world??????? PLEASE

  45. Rhonda Holt says:

    We have tried all of us and I do not think Dr Oz and the shows staff is inclined or interested in doing a show..I do not think these are even being read by them..I have the worse case stage 3 of hemorrhagic IC and its as bad as 3rd stage renal failure now..And still I have put so many of these up and had so many like my self come on and plead him to do a show..I now am trying on the Doctors or Dr Drews life-changers..There are other shows that can help us too.We need to all try other places as well and I believe someone will answer our request…Good luck

  46. Interstitial Cystitis (Painful Bladder Syndrome) can be treated for a lot of people with Low Dose Naltrexone, its a compound medication. Please google Interstitial Cystitis and LDN for all the info GOOD LUCK GOD BLESS

  47. Paula Holleman says:

    I have IC and would love to see a show dedicated to this horrible condition. The suicide rate for this disease is 50%!! There is a reason—there is no quality of life with this disease!!

  48. Susan Pearson says:

    There is an outstanding physician and researcher in San Diego named Dr. Lowell Parsons who treats IC with a proprietary bladder instillation solution. He would make an excellent person to speak with if you ever address IC more indepthly on your show.

  49. Tanya Archuleta says:

    Hi I was DX 3 yrs ago and was told some people get well some don’t at the time I thought that was pretty crappy for a Dr. To say but know I understand I have been though everything possible with medications and different test that some where horrible and still been told by Uroligist don’t believe in IC or the medication Elmiron. So what the hell do you do after that .I had to find a GYN to have the installments.tThe pain meds don’t work but get me sicker than a dog. I feel like I’m crawling out of my skin! I used to be a very energetic woman full of life this condition is devastating not only to yourself but you family! I can’t express enough how horrible this is ! Please help us! In a 12 month period I’m in pain 10 mths. And not to mention your starving have the time because you can’t eat anything! Thanks for you time. I pray for all the other IC patients silent sufferers.

  50. Rhonda Holt says:

    Tanya I feel your pain! I have the worst stage of hemorrhagic IC bladder disease.. Its got my kidneys and my digestive tract.. I live in hell! My bladder controls my life.. I can not leave my house having the bathroom on the hour.. My bladder is 1oz capacity.. This is sad to hear others go thru this as well.. There are very good doctors out there and you may want to try some pain Clinics.. I go to one and they are great! I do hope you all get better or have better days to come..}i{ugs Rhonda

  51. Tanya Archuleta says:

    Thanks Ronda I hope you get better! Thanks for Responded ! I’m in bed today blacked out work today . The pain pills just get to me. But have take them to get though the day. Do you have any secrets about tolerating the pain. Thanks again for speaking to me! Hope you have a good day!

  52. Tanya Archuleta says:

    Hi does anyone wonder why the pain meds don’t work? I have’t been to pain clinic I think that is my next option. Has anyone ever wondered why you could be following the IC diet and still does not help?I did not want to do major pain meds because I’m scared of them and when I was first was DX my son asked me if I would die like Michael Jackson so I was determined not to take them. I read. Book about a woman who cured her IC I did everything she said to do I eat hormone free meat no preservatives food coloring low sodium 900 mgs a day that was the hardest thing to keep salt is everything and glutten free Im still at square one. Im so tired of hurting I want a new bladder ( lol)

  53. I am mainly responding to Tanya from the last post now. OK. Many IC patients, and many people with chronic illnesses for that matter, take plenty of different medications without crocking like Michael Jackson did. OK. Some do have side effects like the drowsiness, dry mouth, weight gain, and so forth. By the way, some people that have died from taking too much medications have been taking stuff that they never had a reason to be taking and that may not have been obtained legally.(and then possibly adding alcohol)(and maybe an illness that was never diagnosed)(and pill junkies) Also, I am not 100% certain which book that you actually read. It could have been the one by the one lady that preys on people like us that want to be cured so bad that we fall into the trap that she actually hopes we will. (which I am not stating her name now)(and want to slap the taste out of her mouth so bad) She claims to be able to cure IC and some other medical conditions. Of course, we don’t have a cure at all. It is kind of like a female that comes on Facebook that claims to be symptom free because of so and so.(and wants others to follow) By the way, she finally admitted to at least one other IC patient once that she never got an official diagnoses at all. Elmiron was supposed to be the best thing since sliced bread, but the success rate happens to be less than 50%. (or I was told 30%) OK. Life goes on. Oh! I used to have plenty of energy as well. I am a Navy war veteran that has to take naps most days in order to get by. OK. I will let that be all now.

  54. Rhonda Holt says:

    Thank you Tom! I do agree there is no cure as of now.. Elmiron caused horrible hairloss in so many! Why take a medication that will cause you to lose your hair, to me its a bad sing something is wrong with this medication and so stay clear of it.. I have had one of the worse cases of hemorrhagic IC for almost 20 years! The pain clinic has been the best thing ever because they help to monitor and control your pain..I found it best to find a doctor who is familiar with the IC.. I am so sorry Tanya! I know your pain and I am now home bound and don’t go out much as my bladder is the size of a gold ball and its affected my kidneys from back up fluids.. I hate being on medication because I am a nutritionist and believe in all natural god given ingredients. I do the IC diet but i have found that taking out some of the nutrition in some of those foods can be even harder on your body.. Potassium being one of them.. Some of these are much needed and we should not deprive our body from the nutrients it needs.. There is a awesome website and support group on MD junction! It really helped me to know others are there with the same thing ans we all support one another.. I put up advice on nutrition there in hopes in would help others.. Try to eat as many almonds and avocados as they seem to help the body to be more alkaline.. And this one sounds crazy but I drink lemon and lime water every day, using stevia as my sweetener and I use a pinch of vitamin C in there Its like drinking Fresh lemonade and you drink all day getting the proper fluids and potassium.. It does not hurt nor bother my bladder one bit.. If you have infections you can use a powder called D”mannose it seems to help the infection and is what is in the cranberry that helps infections as well And has done wonders for me, but only use it if you have an infection.. I have had to try to cope and do so many things and I find helping others has been my best self healing.. I am to a pint they may have to remove my bladder and i had one friend with IC so bad she almost died when they took it out.. It can actually make matters worse.. be-sure you have a good doctor and do not let anyone talk you into taking in out! It is not always the best solution and can make you much worse.. There are so many things that help and having a kind understanding Doctor that works with you is the most important.. Some therapy can help as well.. If you need support go check out MDJunction it has a support group for every health issue or illness and can be so helpful to have that support and learn form others.. I pray everyone to have a Painfree IC day! :)

  55. Tanya Archuleta says:

    So Tom what is your point I know all of that . Oh and by the way my son was 11 yrs old and dint understand of the facts he just saw his mother very sick. My point by telling my story was just to let people know this disease effects everyone in your family . In the 3 yrs I’ve never wrote into a forum I thought it was time to talk to people who actually know what I was living with. It seems everyone is suffering their own way no matter what stages we are in. Rhonda thanks for your wisdom and this will be my last post . Don’t know if you Rhonda have a higher faith but I will pray for you.

  56. Ive had ic and uretha syndrome from birth I think.I only semi cured myself by staying on the pill which alleviates most symptoms in 6 to 12 weeks. Why doctors hide this fact much is incredible to me.All these women suffering needlessly.women know the risks and gladly would accept them in exchange for life.

  57. I have had IC for 20 Years.Iam 59 years old.I don’t sleep.Iam up every 30-40 minutes.Pain everyday.Multiply hydrodestenions,cystos,bladder cocktails.Take cystoprotek. I do heprin cocktails 10,000 iu in sterile water 20cc infused with cath and bulb syringe every week myself , It helps a litttle with the pain after urination not with the frequency.There are time I void evert 5 mins. I am considering a cystectomy (Bladder Removal) The doctors warn against it but do they know or understand what pain dose to you everyday of your life? Trying to find some Doctor or person who has had a cysectomy to talk to me about it. Is it an option for severe IC patients?

  58. Hi, I have been on a high PH Level water diet, following strictly with the IC diet of course, freeze dried aloe Vera, antacids regularly, I do take pain meds when needed but now I also take a stress management pill ( time release and not an antidepressant) and it is only the 3rd day but I will let you know how it goes. It seems to be working great and keeping my stress under control. And my IC flares are NOT as extreme as before.

    These all seem to help me. I use to not be able to get out of bed. Now I can ride my bike, with the right kind of seat. I can’t run, but I can now go for walks so things are getting better. There is hope.

  59. THERE IS A CURE but it takes time and great sacrifices. I’ve been thru it all. Lot my job. Tried every dr and specialist. Went to 8 hospitals and clinics because each dr had no idea or just tried something stupid. Tried acupuncture, Chinese medicine. You name it! But now on the SCD diet (minus juice and coffee) I’m starting to get my life back! I also drink organic unpasturuzed acv for flares and a teaspoon each morning in water for prevention. I was against trying acv but its actually helped. I also did raw garlic, crushed 3-5x a day 7 days straight. It’s cheap and clears out yeast/bacteria etc. that made a huge difference. Got off vitamins and pills w magnesium stearate. I try now to use food or whole herbs leaves and avoid pills as best I can. I have a pill bin of remedies and vitamins prior. Juniper berries boiled in water also help with flares for me. As does turmeric (95% curcuminoids only) if I take 4 grams at a time. And I grind milk thistle in a coffee grinder to heal my liver to allow it to work harder. BUT the diet is what’s working!!! It’s been a month and I’ve had a few 100% pain free days! After over a year of agony! And problems prior, but a year of no let up. It takes time and commitment. But it works and I’m not the only one. I do avoid any juice tho the diet allows it. Being on soooo many rounds of antibiotics getting off sugar is key! I have 1 teaspoon of honey a day in a whole leaf “tea”. I usually boil juniper berries or spearmint. I eat a salad nearly every day and make a giant crock pot of soup/stew each week and mostly live on that. Apples, oranges,lean meats, berries in yogurt. Nuts, seeds. But you have to be desperately in pain (my opinion) to do it 100%. I would a never otherwise. I had nothing to lose and ran out if options and money. A few times I cheated and had ice cream and chips (different times) and had a huge flare! Any insulin spikes seem to do it. I also find stretching very helpful. If ure desperate and willing to try “anything”. SCD is the only thing that I believe will cure me in the long run.

  60. September is Interstitial Cystitis and Pain Awareness Month. Yep.

  61. Please excuse this as i am typing on my phone.

    My sister had severe IC. Pain never less than a 3. More frequently 7-10.
    Nothing worked . She would scream in pain. This went on for 12 years. She had her bladder removed as a last resort. It helped for 6 months. Then the nerves regenerated and she was back where she started. She would have flares. Her cheeks would turn red like a lupus patient.. But she never ruled in for Lupus. She took high dose steroids- in the end if she tried to come down from the steroids her pain would spike. It affected her lungs. She was on high dose narcotics, gabapentin. Nothing worked . Also had every other imaginable procedure done.

    One of the other posters is right. The pain is trivialized by many. My sister would take 60 mg methadone , 800 mg gabapentin, 16 mg Dilaudid and she would still scream in pain. Unbelievable pain. i still shake when i remember listening to the screams coming from upstairs. She became tolerant to a large degree to her meds , and it is also nerve pain which is much harder to treat.

    She got diabetes from the steroids. Osteoporosis and spinal fractures from the steroids. Oh , and she bled from her kidneys

    Multiple admissions for respiratory failure thought initially just from all the pain meds. However, one visiting physician stated research showing possible insidious infectious organism may be partly to blame affecting multiple organ systems.

    My sister was trying to get to Switzerland . She didn’t have to. She died of respiratory failure.

    This is a multifaceted systemic disease. It is sinister . I myself am still traumatized by the whole thing. And I wasn’t the one suffering.

    Rest in Peace Cheryl

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