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  1. #1
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    Is there any reason to get a cysto if I don't intend to go on meds if I am diagnosed?

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    About 3 years ago I started to have what appeared to be a UTI every 4 months or so. I went to the doctor at one point 4 times in one year and was diagnosed with a bladder infection each time. Everytime I was treated with antibiotics.

    Around Fall 2013 I started to feel like I was constantly having bladder urgency and a stinging feeling. The level of pain was never very high, but of course it was incredibly annoying. I spoke to my general physician about it. She suspected maybe I did have IC. She looked at my previous lab results and saw there was never any bacteria involved. She looked at my urethra which I said felt inflamed and said that there was no physical inflammation and everything seemed fine down there. She ran every STD test, including a yeast and acidity test and I came out normal all around. She said that I likely had IC and I can go to a urologist to get a cystoscopy.

    Well.. it's now April and I haven't gone to the specialist. My pain is very tolerable if I follow the IC diet. It is helping a lot. I do find on some days that I follow the diet perfectly, I still feel a slight flare in the AM when I wake up.

    I have cut out alcohol, tea, coffee, Dasani water, processed foods, chocolate and fruits (with the exceptions of blueberries and gala apples), spicy foods, vinegars, lemon and lime.

    My diet consists of veggies, meat, fish, eggs, blueberries, apples, fresh pressed veggie juice and some grains like oatmeal, quinoa and rice or minimally processed carob\ vanilla/ caramel treats. A friend who is a physician suggested eating more veggies as they can really help keep you pretty alkaline. I eat very minimally processed dairy including yogurt and some cheeses.

    I drink tap water or Fiji water and chamomile tea, Kaffe Roma barley drink and sometimes the Metromint waters. My bladder is really under control with this. I might flare for 10-15 minutes a day and feel more pressure. I also have to pee more frequently (I would say maybe twice as much as a normal person) but I don't have to wake up in the middle of the night so I think my bladder capacity is ok. Maybe not great but not exceptionally small either.

    I am taking the following supplements (all high quality):
    Magnesium (1x)
    Vitamin D (1x)
    Probiotic (switch between Renew Critical Colon & Raw Female 50 Bil)
    DH Aloe Vera (3x AM, 3x PM)
    Collustrum (3x)
    Omega 3 oil
    Celexa 10mg a day (for anxiety)

    My family has a huge history of autoimmune disease and food allergies and it would probably be in my interest to really take exceptional care of my body now (I am 30 years old) to avoid having more autoimmune issues. My question is, if you were in my position would you go to see the specialist and get on meds or would you try staying natural if your pain was pretty low following the diet? I do want to be able to enjoy whatever I would like to eat at some point and hope my bladder heals or I get to a point where I don't have to limit so much of what I eat. I know its not curable but I have heard of people who can eat what they want now. Any advice for me?

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    Welcome to the IC Network. I'm glad you found us.

    First of all, I think working towards a diagnosis is a good idea --- there are some curable diseases that present with symptoms similar to those of interstitial cystitis. It would be a shame if you had something completely curable, but you continue to suffer. And it's important to remember that supplements are medications --- they just haven't been evaluated by the FDA in most instances. I do suggest that you give the IC diet a try if you aren't already following it. There's a link to the food list in my signature below.

    Sending warm healing thoughts,
    Donna
    Have you checked the ICN Shop?
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  3. #3
    ICN Member teachjcr's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    I was told that I needed a Cysto to rule out bladder cancer. It's not really to look for signs of IC, but those with lesions are able to see them. The only way to really see the IC without lesions is to do a cysto under anesthesia with hydrodistention to see the pinhole bleeding from the bladder wall. I just had a regular one-no cancer, but it left me in bed in great pain for 2 weeks.
    You may want to consult your doctor about the necessity.
    Welcome to this forum. Good luck.

  4. #4
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    I have a question... Does the bladder ever heal?

  5. #5
    ICN Member teachjcr's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    More than likely, no. There is not enough known about how and why this disease occurs. Most of what they know are educated guesses with no hard data. It can improve, but I'm under the assumption that it'll never be completely healed. Elmiron can rebuild the lining but not cure the problem.

  6. #6
    ICN Member Clevsea's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    Quote Originally Posted by CarobChip View Post
    A

    My family has a huge history of autoimmune disease and food allergies and it would probably be in my interest to really take exceptional care of my body now (I am 30 years old) to avoid having more autoimmune issues. My question is, if you were in my position would you go to see the specialist and get on meds or would you try staying natural if your pain was pretty low following the diet? I do want to be able to enjoy whatever I would like to eat at some point and hope my bladder heals or I get to a point where I don't have to limit so much of what I eat. I know its not curable but I have heard of people who can eat what they want now. Any advice for me?
    Yes and no. I want to say a big, giant YES to staying with what you are doing because you are eating healthily and going with natural supplements ... and the pay off is you are not in much pain or discomfort. I have turned down the typical Rx's suggested to me. I pay that price with a lot of pain but I do not want to be on amitriptyline or Elmiron. I knew that going in to my cysto.

    The cysto is part of the process of elimination and will rule out cancer and whatever else. When you exhaust all those possibilities then you are diagnosed.

    I read somewhere recently that doctors are favoring the Q and A approach with their patients over the multitudes of testing. But I think most of here were tested for STD's and given cystos and checked for lots of other things before we got diagnosed.

    My cysto didn't last long and there was pain afterward but that helped me to know that instillations were not going to work for me either. My pain is about 90% in my urethra so the instilled medication(s) would be held in the bladder and then pass the urethra rather quickly on their way out. But......I'm still glad I went through with the cysto so I know I did all the things they told me to do.

    I think taking good care of yourself now is really going to pay off for you. At least you'll know you tried to approach it the healthy way.

  7. #7
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    The newer guidelines aren't recommending cystos as a first line diagnostic test but drs. are still suggesting it. I had two done and will not have anymore. One of my uros did a cytology urine screen for cancerous cells which actually eased my mind more than someone looking into my bladder with a scope. Seems that a simple ultrasound or CT scan would show if there were bladder stones or growths that were abnormal. I'm not a fan of the invasive cysto and I think they are sometimes over used. I've been in remission now for a long time but still remember the anxiety and pain that goes along with this condition.

  8. #8
    ICN Member Antonia11's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    I had my cysto with hydrodistention in 93 for DX, and it exploded my symptoms from the tolerable ones you're describing to unbearable, nonstop pain. I understand what everyone else is saying about ruling out other things, and maybe they do them differently now (??mine was in 1993, the dark ages...lol), but I did not recover from that pain for a few years. After recent injuries, a uro-gyno was interested in my "case" (trying to prove that I'd been misdiagnosed with IC, that it was pelvic floor dysfunction all along--um, excuse me? I politely asked him how he'd feel if someone told him HIS genitals had been "dysfunctional" for 20 years!!--and that I wasn't actually injured at all.) I said I'd never go through that pain again to save my life.

    I'd hate for them to be missing something, and of course, cancer isn't something you want to be missed diagnostically. But as a straight up question of having it vs. not if it's not that necessary, I would say avoid it at all costs. It turned minor symptoms into uncontrollable pain for me for a few years. They actually over distended me and caused some added damage, which can happen. Once it healed up, I turned out to not have a terribly bad case of IC, oddly enough.

    Sounds like you're making some good choices already, keep up the good work, and mainly, try to not focus on it. The worst thing for IC (other than orange juice) is focusing on IC, just my opinion.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  9. #9
    ICN Founder icnmgrjill's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    From a treatment standpoint, the AUA Guidelines absolutely want you to explore the alternative strategies first. Step One is all self-help including diet modification and the use of some OTC supplements such as CystoProtek, CystaQ, Desert Harvest Aloe, CystoRenew! And what they say is that you're not responding to the Step One interventions, that's when you move to Step Two. So, if you're responding well to Step One.. you can stop there.

    (1) Having a proper diagnostic workup is essential… particularly the pelvic floor assessment. I think it's important to at least talk to a specialist and have them review your symptoms and perform a PFD assessment to see if your muscles could be triggering your symptoms. If that's the case, then what you are doing now would not be helpful and we don't want your symptoms to worsen. So, it's worth having that checked out.

    (2) Another member suggested that it was important to address any worries you might have about cancer. I'll be honest and say that I was convinced that I had cancer my first year because I couldn't imagine anything but cancer hurting as badly as I was hurting. I actually demanded exploratory surgery and, yup, when I woke up in the recovery room, they said it was just IC. That was a TREMENDOUS RELIEF for me.. and essential for my personal emotional health. I'm not saying have the surgery.. but they can test for cancer with a simple urine test (urine cytology) if that happens to be a worry of yours. I grew up in the home of a smoker and since smoking is the #1 cause of bladder cancer, I had to have that checked.

    (3) If it's a simple, in office cysto, I would let the doctor do it. I call that a lookyloo because it generally takes less than five minutes. They just numb your urethra and then stick a cystoscope in to take a quick look. And, at least, that allows the urologist to see your bladder rather than asking him to guess what's going on in your bladder. Basically, I think this is a fair request and I, personally, don't like guesses. If I'm in pain, I want to know why… and so that means I usually want them to take a look. I've had two cystos from my very gentle urologist and would do one tomorrow if he asked again.

    On the other hand, this is NOT a hydrodistention with cystoscopy which is now only done if the diagnosis is in doubt. This is a much more invasive procedure that requires out patient surgery, anesthesia and has the potential of damaging the bladder. It should now be done only using a low pressure and for a short duration. The AUA now specifically discourages high pressure, long duration procedures because of their potential to damage the bladder.

    Please check out the treatment discussions on our website for more information, as well as the supplements that we have in the ICN Shop. You're doing the DHA but you might also want to try something like CystoRenew or CystoProtek for their bladder coating effects.

    Jill O.
    Last edited by icnmgrjill; 04-30-2014 at 06:57 PM.
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  10. #10
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    I've had IC for probably over a decade. I have a long and complex history of autoimmune disease. I have vulvar vestibulitis and, at one time, my specialist told me I was one of her top three cases based on severity - a rather ominous group to be in! She is also the one that diagnosed me with IC, based on my symptoms. She referred me to a urologist who did a cysto in his office. It was rather painful, especially since I have a lot of sensitivity in my urethra. He said that my bladder looked "normal" so he didn't think I had IC. I shared the results with my VV specialist and she referred me to a different urologist, one within the same medical group. FYI, she sent me to the first doc because his office was much closer for us - 30 minutes, versus 1+ hour. Anyway, the new specialist was a younger doc and I liked him from the start. He was very balanced and didn't question my pain - in fact, he offered to prescribe my pain meds, etc. so I could quit going to the pain clinic. He said that he'd like to follow me fairly closely - at least bimonthly visits - do it didn't make sense to him for me to see both him and the pain doc.

    Anyway, after a few months he said he'd like to do a cysto, under anesthesia, to able to rule out any other types of disease. I trusted him and agreed. He did take two tissue sample for biopsy but told me ahead of the results that he was positive I had IC. The pathology results did confirm that I had IC. Also, several years later my husband told me that the doc had done a mild hydrodistension. I was a little irked because I had told him ahead of time that I didn't want hydrodistention. In the big picture, though, the actual procedure went very well and I only had mild discomfort afterwards. I was in more pain than usual for maybe 2-3 days following the procedure.

    I am in constant pain and have tried a number of medications. I have used Elmiron, but only as a component in bladder instillations. Instillations are a trade off with me. The pain my urethra gets from catheterization is rarely offset by any benefit from the instillation. So, I rarely do instillations any more.

    I am on full SSDI because of my IC. However, none of the medications that are specifically designed for the bladder are covered under Medicare Drug supplement plans. Urelle used to give me some mild relief. If I wanted to continue to use it I would have to pay around $650/mo for it. We can't afford that. So, I live on Norco (hydrocodone/acetaminophen), Baclofen and Lorazepam. There are some other meds that I take but not on a regular basis.

    I will add that I moved to MO (from CA) about 18 months ago and had to find new doctors. One of the specialists I see now recommended using Lorazepam tablets vaginally to relax the pelvic floor. They are helpful but getting them covered, in addition to my regular oral Lorazepam, has been a challenge.

    I do take a lot of supplements and work with as many alternative care providers as we can afford. The allopathic physicians I see are, for the most part, very open to alternative treatments. I did try DH aloe vera and it actually made my IC worse. I find that I do much better with George's aloe vera juice. I drink at least 8 oz. of it daily.

    I have found that diet is a very individual thing for me. I kept a food journal for continue to do so. I avoid gluten, spicy foods, and preservatives. I eat organic foods as much as I can.

    I'm 56 years old (sometimes young!) and have had a number of surgeries for pelvic related issues including endometriosis, fibroids, ovarian cysts, adhesions, and pelvic congestion syndrome.

    Enough of my story - in answer to your question I would say to first find a specialist who you like and are very comfortable with. If he/she can give you a good reason to have a cysto, I would do it if I were you. It's worth it to rule out other things that might be going on, as well as (possibly) definitively confirm your IC.

    Good luck with your journey!
    Blair
    Missouri

  11. #11
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    I'm going to disagree with several on this thread about a cysto with hydrodistention. I was misdiagnosed and told that I did not have IC after a cysto/hydrodistention in the urologist's office. Three years later, I went to a different doctor who is an IC specialist. He claims that IC cannot be diagnosed accurately without a hydrodistention under anesthetic as IC patients cannot tolerate the pain from the stretching.

    I also disagree about how one feels after a cysto/hydrodistention. Maybe I'm different, but I always feel so much better after having it done. I've had 6 of them in the last 5 yrs (3 in the last year due to Hunner's ulcers). Sometimes I've felt better for several days, or even sometimes, like this last cysto in March, I felt better for about a month. It's a pleasant break from the symptoms, along with some much needed sleep, which is where IC takes its toll on me.

    It sounds like you are on the right track with the diet. Other than adjusting it a little to follow the IC diet, keep doing what you're doing. One thing about the aloe vera juice, I agree with Volosolo, George's aloe vera juice is the best on the market. It's not bitter and it does not contain any of the latex material that some aloe juices contain, which can have more harmful long term effects. I tend to only take the aloe vera juice when I feel a flare coming on as it tends to make my digestive tract work a little too well. I have tried Elmiron, but to me, it is more of an irritant.

    Everyone is different. What works for one person, may not work for someone else. One other thing I recommend is making sure your urologist specializes in IC (or at least has treated some IC patients before). Best wishes to you!

  12. #12
    ICN Member Antonia11's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    annp--I was told after my hydrodistention that they didn't anticipate my bladder being so small, and essentially damaged it worse by using too much saline. Apparently it caused quite a bit of bleeding. Naturally that sort of cysto experience is going to differ from a hydrodistention that involved no complications. However, prior to having one done, as we're all different in our reactions, no one knows how they will react physically to the procedure. I'll also note that my procedure was 21 years ago, and likely falls under the category of procedures now discouraged as per Jill's post above.

    I'm glad that these distentions are helpful for so many of you!
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  13. #13
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    Antonia11 - I know that each person can react differently and have a different outcome to a cysto/hydrodistention, but it's not fair to someone asking for an opinion to hear them all one-sided. Not everyone is going to have a bad experience. I actually look forward to having them done for some relief. Hopefully, she would have a positive experience from it, too.

    I don't agree that a cysto is a procedure that is now discouraged. Advances in medicine and diagnostic equipment have come a long way in 21 years. I regret that I was misdiagnosed for three years with an office cysto and thus prolonged getting the right treatment. IC diagnosis has often been through the process of elimination, but a urologist trained in treating IC can make an accurate diagnosis with a cysto/hydrodistention without dragging out the process for weeks or months. I do agree that they should be done with low pressure and for a short duration.

  14. #14
    ICN Member Antonia11's Avatar
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    annp--my comment about them now being discouraged is simply from Jill's post above, I don't know beyond what she posted (I thought I made that clear) what is done these days, as I generally run screaming from urologists...lol.

    I agree, the person asking deserves to get answers from every angle, I was simply giving my experience, which was horrible, but I did note that it was last generation and not likely how it is done now. Mine was likely not low pressure, and damaged my bladder. The meds I was given did me more harm than good in the long run, but I'm med sensitive. I try to make that clear when I post, because many are helped and have very positive reactions to medications.

    Anyway, I meant no offense whatsoever.
    DX IC (cystoscopy) 7/93
    Meds did little-nothing, but Paxil (98) calmed it down. (No longer on an SSRI; hate meds)
    IC went to "barely noticeable" status for years. (I put it on 'ignore')
    MAJOR flare 7/13 along with 2 injuries, especially the first, labral tear, right hip.
    Unable to urinate hardly at all with undiagnosed muscle tears (10) & labral tear Fall/Winter 13/14.
    Surgery successful for muscle and hip repair, 4/14. Researching the connection between hip injuries and pelvic/bladder painhttp://www.hss.edu/hip-pain-center-f...-questions.asp as well as muscle tears: http://vincerainstitute.com/core-inj...sports-hernia/ (just some helpful links)

  15. #15
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    Re: Is there any reason to get a cysto if I don't intend to go on meds if I am diagno

    Antonia11 - no offense taken!

    I think my disagreement is more with Jill's post. A cysto/hydrodistention is no more invasive than a cysto done in the doctor's office. I don't view it as surgery as there is no incision. It's a procedure. After my misdiagnosis in a uro-gynecologist's office (someone who was supposed to be an expert) based on an office cysto, I'm very leary of any doctor that says they can diagnose IC without doing a hydrodistention under anesthesia.

    Jill - Please know that I do not mean any disrespect to you. This is solely my opinion and based on my experience (6 of them in the last 5 yrs). I just feel that everyone should know that a cysto/hydrodistension is not necessarily a horrible experience for everyone.

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