New, frustrated, and confused -- help!?

[klite]

Hi everybody on the board.

I'm very new to all of this (IC and forums), so please forgive any slip-ups I might make.

First off, I want to say that I have found just perusing this board and site comforting. I am currently feeling quite frustrated and beaten down by the health system.

My story in short: I started having, what I thought and what my doctor thought, UTIs about a year ago. Maybe longer than that, but not too often. Suddenly, about six months ago, the 'UTIs' became more frequent and more painful. Since the beginning of this year, I was having two 'UTIs' a month!

The last episode I had was the worst. I felt what I thought was a UTI coming on and so I really pounded down the cranberry juice (which I don't even like!) and taking cranberry pills. I was okay doing that for about three days and then suddenly I felt terrible, terrible pain all through my pelvis. I was put on a short round (three days) of antibiotics. After that course of drugs, I felt even worse. Now I had major flank pain! It was terrible.

I ended up seeing another doctor (not my usual one -- who I like!), who noticed that I haven't ever really had bacteria in my urine (maybe once or twice over the past 2 years) and she suggested that I might have IC. She still put me on a week long antibiotic treatment, just in case it was an infection.

When I came home from that appointment, I looked up IC and found this site. I immediately checked out the "what not to eat/drink" list and stopped drinking all of that cranberry juice! My symptoms went away gradually, but I think it was because I was started watching what I was eating (and not because of the meds).

Anyways, I saw my regular doctor and asked him to prescribe me an antibiotic to take after sex (since my sex life has definitely suffered from all of those "UTIs") just in case and was referred to a urologist. Here's where I start to feel incredibly frustrated . . .

I saw the urologist yesterday and it was a very upsetting appointment. Long story short (because I don't want to violate the rules of the board), I had some tests performed on me, but I don't know what they were! I had to empty my bladder and then I was put through some procedure where the urologist first emptied my bladder with a catheter and then my bladder was filled up with some sort of gas for four minutes. It was the most painful four minutes I have ever spent at the doctors (or anywhere come to think of it)! I was in extreme discomfort and pain and I don't even know what it was for! I think the urologist said that they took a look at my bladder, but I'm not sure what for.

Anyways, the urologist told me that I didn't have IC, but over-active bladder. I'm 29, don't have any problems with incontinence, never have to pee just suddenly out of the blue -- and that certainly doesn't explain the ridiculous amount of pain I get (cramping, shooting pains after I pee and just kind of throughout the 'flare').

So here I am. I have read through a lot of different sites about IC and OAB, and I really feel like I have IC. It just makes sense. I mean, if I indulge in too much chocolate/tomatoes/processed food, I'm hurting that evening/next day. And I can't even think of drinking wine or anything with caffeine in it without cringing.

I don't know. I just really need to talk with some people who won't tell me that "it's all just stress."

I'm seeing a natureopathic (sp?) doctor at the end of the week. I'm hoping that with some changes to my diet and that will help with the symptoms.

I feel like I've written a book now. Sorry if I've been too long winded for a first timer, but I really needed to get that out.

Any advice would be greatly appreciated! Thanks for reading.

[Goldfinch]

Hi and welcome. It's possible you have IC, but if you've been reading up on the boards here you will quickly learn that IC is a diagnosis by exclusion, so it can take a while to be sure.

The first thing I would do is call the uro's office and make sure what test they did. It probably was a simple in-office cystoscopy, but find out for sure. You cannot be diagnosed with IC from that test alone. It does allow the doctor to get a glimpse of your bladder, and irritation of the bladder wall can be seen, whether caused by IC or infections or something else. However, it is a test that is performed routinely by all uros to rule out bladder cancer and bladder stones. You can have a perfectly healthy looking bladder during this test and still have IC.

Your response to diet triggers may indicate IC, but it can also simply mean that your bladder is very irritated and responds to the low-acid bland foods. Even if the irritation is from a UTI the diet can calm your bladder.

My suggestion is to stay on the IC diet and do exactly what you are doing: read up on IC and OAB and go back to the doctor you like. Discuss all the aspects of your symptoms and your visit to the uro. If the uro who did the test thinks you have OAB, did he prescribe an OAB meds? That would be an antispasmodic such as Detrol, Sanctura, etc. My doc first thought I had OAB too, but typically OAB does not involve a lot of pain or burning. The main symptoms are urgency/frequency from spasm of the bladder; incontinence can be a part of that, and is usually caused by an inability to get to the bathroom on time. IC is not usually accompanied by incontinence. Antispasmodics can help IC, but usually they aren't enough to help with all the symptoms, and are often used by IC suffererers in combo with other meds. And they take a while to kick in; detrol can take up to two months to become effective if it works for you.

You may decide to see another uro. Many here have seen more than one before finding a good one who listens and who understands that IC is a collection of symptoms that vary from person to person--as does the treatment. I know how frustrating this time can be, when you aren't diagnosed yet and don't have a uro you are happy with or a treatment plan. Hang in there, and be tenacious.

If you have burning and UTI like symtoms you can try the otc med pyridium, sold as Azo or Uristat in the drug store. Follow the direx on the box.

[klite]

Thanks for the advice Goldfinch! I can feel my spirit lifting already.

I know that I need to go back to my regular doctor and get a referral to another uro. I'm just still feeling a bit deflated after yesterday's appt. and need a day or two until I can face another round of doctor's appointments.

I will also call the back the uro's office and find out what the test was that they did -- it does sound like it was the basic in-office cystoscopy though. It sure was painful though and I'll definitely make sure to talk about it to my doctor (and the next uro I see).

The uro did prescribe Ditropan to me, but I don't want to fill it until I have had a chance to get a second opinion. I'm WAY more concerned about the pain issues, then the frequency and urgency (which are manageable for the most part). I just hate the idea of taking unnecessary drugs, so I'm going to wait until I talk to a uro who I'm comfortable with.

And, I must say, I love the fact that you used the word "tenacious." I think you hit the nail right on the head! I'm usually more of a tigress about health stuff, but this whole bladder/pelvic pain issue has me acting more like kitten.

Tenacity, here I come!

[Mrs. Peel]

Welcome Klite. I'm glad to hear that the forum has been comforting for you.

I'm in my first month of treatment for IC, and it's getting easier. I started baking my own bread because there's no bakery around here and the ones in the supermarket all seem to have additives we don't want. My husband loves the romance of it. Brings him back to the old days on the commune! So there is at least one up-side.

Pyridium helps me during flares. My main flare problems are flank pain and weakness. I just wanted to warn you to wear pantiliners when you use it. It really, really stains. Also, the instructions say don't use it more than a few days at a time.

I hope you have good luck sorting out your doctors. My uro was sure I had IC from the start, but we still had to run a culture and cytology urinalysis to eliminate other possible problems before the Hydrodistention confirmed IC. That takes time. And it's true you might not have IC, which you are better off without for sure.

Wow, sorry to hear about the cranberry bombardment. That must have smarted! And that cystoscopy. Youch!

I would suggest you get copies of your records, including photos if any, from that Uro. He may have sent them to your regular doctor, so you might not have to deal with him to get them. They will be helpful for any other doctor you go to, even your Gyno.

[Goldfinch]

Oh, just wanted to mention a couple of other things: first, remember to drink LOTS of water to dilute your urine. That will help with pain.

The suggestion above about making sure all your medical records travel to the next uro is a good one. You don't need another in-office cysto if the uro wrote down details of what was seen. No pix come with an in-office cysto, as far as I know.

Also keep this in mind: all uros have different ways of approaching IC, and there is no one way that's correct. Some advocate certain tests, others don't. Often a diagnosis can be made based on symptoms and response to diet with confirmation based on response to meds. The two more invasive tests used for diagnosis are the Potassium Sensitivity Test and the cystoscopy w/hydrodistention. Neither is necessary for a diagnosis, but every doc will have an opinion about their uses. In some cases a biopsy is advised, so a cysto w/hydro is done (typically under anaesthesia.) I suggest reading about these tests ahead of time.

[BT2008]

Hey Klite,

:welcome:

After three months of trying to ascertain the cause of my severe pelvic pain I finally went to see a urologist. He asked me some questions for about five minutes and he said he thought he knew what it was: IC.

He never touched me during that appointment to give me any type of exam or physical test. Rather, he scheduled me for a cystoscopy with a hydrodistention under anesthesia four days later.

The difference between the in-office cysto and the out-patient cysto/hydrodistention under anesthesia is that the hydrodistention aspect is an intentional "over-distention" of the bladder with water to see what happens to the bladder lining when it is stretched beyond its normal capacity. This tells the doc certain things, such as what exactly the "normal capacity" of your bladder is, which varies with each of us, but it also shows the "integrity of the bladder lining."

With over-extension, some of the tiny blood vessels inside the bladder lining may become "pin-point hemorrhages" (called glomerulations). While this does not always indicate IC, it is suggestive of IC, especially if there are a whole lot of gloms. If the integrity of the bladder lining has been more severely compromised, there will likely be "wounds" or "lesions" in the bladder wall that will break-open and bleed when over-extended, and/or more complex lesions that are called Hunner's Ulcers, that go deeper than just the surface of the bladder lining. This is even more suggestive of IC, and is oftentimes used as a definitive dx.

There seems to be a difference of opinion within the uro field as to whether or not the hydrodistention is actually necessary (and apparently the uro you saw doesn't believe that it is), but I am glad my uro went ahead and did one for me because it seems that it eliminates having to wait even longer to find out whether or not IC is really what is going on. Also, it seems to me that a uro might use the in-office cysto to dx IC (if the lesions are present), but I don't see how an in-office cysto can be used to definitely rule out IC, when the hydrodistention shows a great deal more.

It is my understanding that "IC" in general or "mild IC" in specific can be dx'd by exclusion alone, but when it comes to dx'ing "moderate IC" and "severe IC" then the hydrodistention is the test that concludes this one way or the other. But remember, even with the hydrodistention, you could have a perfect bladder and still have mild IC.

Mild IC usually has very little or only sporadic pain involved, but more severe pain can oftentimes indicate moderate or severe IC (I had severe pain and the hydro verified that). I wish it was easier to provide a more clear-cut answer sooner, but like Goldfinch said, short of a hydrodistention, it just takes time to figure out exactly what is really going on.

Pain is a very subjective thing, and there are two primary types of pain involved with IC: visceral pain (from actual organ damage) and neuropathic pain (a misfiring of signals between the brain and the bladder). Because IC'ers can have either one or even both kinds, it is only through trial and error that the right pain medication can be found that will help (there are separate pain med therapies for each type of pain).

If you are like me, it is the pain that is the main complaint with your condition. That is what I would want treated FIRST. And, if you truly feel that you probably do have IC, and want more of a confirmation, then I would ask your regular doc for a referral to another uro who will do a hydrodistention for you. And keep looking until you find one!

This forum is full of all kinds of info on these things, but unfortunately most docs aren't as well-informed as we are!! You do need to be "tenacious" and find a uro who will listen to you and do everything in his/her power to get you started on a viable treatment plan asap. In the meantime, continue to follow the diet, drink a lot of "pH neutral water" every day and honor your body by listening to what it is telling you. Also, start writing down "everything" -- from the amount of times you pee every day/night to what you are eating/drinking and when. Start gauging your pain on a 1-10 scale so you will know if something you are doing makes it better or worse and write that down as well. After a few weeks you will begin to see what your patterns are, which will help you learn your 'triggers' and will help your docs to see in greater detail what is going on overall.

We are all here to help you so ask any questions that come to mind. Scour these threads and learn everything you can about IC and what matches your version of it. Remember, however, that even though we all share the same disease we are all different in many ways--from symptoms to effective treatments. You have to be your own advocate and you must be clear about what is going on in your body so you can be clear with your docs about what you need!

Take care, and let us know how things are going!

Hugs!
:grouphug:
~Beth

[Mrs. Peel]

My uro doesn't use the potassium method because if you do have IC, the pain is overwhelming. According to him, it's a sadistic mad scientist approach. I guess it's a test you'd use if you're pretty sure you don't have it and you just want to make sure.

He also wanted to be totally sure because he goes by FDA approved treatment only, which means Elmiron for life.

While I'm very thankful my first uro in this area is and IC advocate, I'm hoping to move on to someone with a more comprehensive approach. If I can afford it, maybe a nutritionist who can really explain triggers and maybe develop a diet plan that works for IC and IBS both.

[klite]

Whoa! Thanks all for this wealth of info and support. I went to sleep with pain and burning last night and was feeling cranky this morning after having woken up to pee and not getting great sleep (story of my life!), but reading your posts have definitely helped my mood.

I'm going to go through my regular doctor's office to get the information (test results, etc) from the uro I saw. I'm feeling "once bitten, twice shy" about interacting with that particular office again, and since my regular doc is helpful in these matters, he can help me out here too!

I think once I get to actually talk out my symptoms with a uro who will listen, we will be able to determine whether I have IC or not. My regular doc thinks that it's a real possibility, so I shouldn't have a problem getting another referral.

The more I read about OAB as compared to IC, the more I know that I don't have OAB. It might indeed be something else other than IC, but nothing of what I'm experiencing sounds like OAB!

Also, like a lot of other people on here, I also have IBS and ovarian cysts, which sometime like to get together with the other pelvic pain and really make me wonder what the heck is going on down there! I try to be careful about what I eat, but clearly, I need to be more vigilant. One of the main reasons why I made an appt. to see a naturopathic doc is because I just want to sit down with someone and work out a better healing approach for my body than "just take this pills." Like Mrs. Peel, I guess I'm for a more comprehensive approach as well.

Whew. Thanks for all of this great info and support. I've gotta be careful to moderate my time on this board, otherwise I won't get any work done!

I'm making another doctor's appt. right now . . .

[klite]

Okay, as promised, doctor's appt. made! And it really was reading your posts that gave me the push to make it today and not wait until the end of the week.

So Friday I see a naturopath in the morning, and my regular doc in the afternoon! A day of medicine . . . fun?

I'll let you all know how it goes!

Have a great day all.

[versefaerie]

It seems like doctors are real easy about giving out ditropan.
Now that said, ditropan has helped me with frequency and urgency, but it took seeing at least two different doctors to get a prescription for elavil (I was willing to take ANYTHING) for the pain!

The first time I went to my PCP, he was like "you have medical school itis, you are stressed out, and probably have an overactive bladder. here is some ditropan." That is yet another example of a frustrating answer.

I hope your uro appt goes more smoothly this time, and you get some answers and/or some treatments/oral meds. :)

And about ditropan: I still take it in the mornings sometimes before work to help with frequency, and it is supposed to have antispasmodic properties, but I still need other medications (such as elavil) to help with the PAIN of IC (and/or similar related disorders, PFD, etc).

[klite]

Hi All!

So today was the day of doctors and . . . it was actually really good. My meeting with the naturopathic doctor was productive and comforting. It turns out that she has a lot of experience working with patients who have IC, and she believes that I have IC from everything I described to her (a whole hour of me listing my health trials and tribulations from the past 3 years!).

She has started me on a restricted diet and encouraged me to keep following the IC diet. For starters, I am to avoid tomatoes (and tomato products), milk products, and all refined products (particularly those with refined sugar and flour). She also prescribed horsetail (equisterum arveus) in liquid or tea form 3 times a day, in between meals, as well digestive enzymes, 3 times a day with meals. I go back in one month and we will further adjust my diet accordingly (I think I might have to say goodbye to gluten for awhile at that point).

Apparently the horse tail is supposed to help my bladder heal -- does anyone have any experience with it? I'm hoping to find the liquid, because the tea sounds like it might be unpleasant tasting, but I might just be thinking that because of the name!

I also talked everything over with my regular doctor and he's sure that I have IC too, now that the uro appt (as terrible as it was) ruled out other potential bladder problems (i.e. tumour, etc). He also thought it was ridiculous that the uro told me I had OAB, so that was comforting to hear. I'm not crazy! :woohoo:

So yeah. A good day. I finally feel like I have the name of something to deal with -- IC. I have already noticed a difference in pain with my brief dalliance with the IC diet, so I'm feeling positive about the changes to come. And I also finally know that the "sore lump" that happens in my abdomen all these months (years?) is actually my bladder. Now I feel really sad for my bladder. Poor thing.

Once again, thanks for the support and the words of wisdom. I plan on sticking around this board for awhile. For the first time, I feel like I have people to talk to about this -- who actually get what I'm saying.

And now to indulge in chocolate one last time . . .

[jiriji]

Re the horsetail:

My mother used to swear by it, along with yarrow root, i think. They are both known for soothing the bladder.

My IC is mild with very occasional flares, just a few weeks every couple of years, but i avoid caffeine, tomatoes, oranges and acidic juices. I am also taking a product named Bell's Bladder and Yeast Infection. It contains D-Mannose, pumpkin seed, uva ursi, buchu leaf, hydrangea and golden seal. I used to take cranberry pills but now i take this instead.

I also drink very, very diluted ginger and lemon iced tea - virtually water with just a bit of flavour. I add half a teaspoon of baking soda to a glass of this before bed and first thing in the morning. It helps me sleep through the night. It prevents my urine becoming too acidic, especially at night-time when i'm sleeping and therefore not drinking.

I'm lucky, i can get away with a little bit of chocolate every now and then :)

[MommaWuzzi]

I was so happy to read the "bladder, poor thing" part of your comment; I feel the same way about mine all the time.

It sounds like you're getting treatment now. If it were me, I might spend some time on that treatment and see if it helps before going for another referral. Of course, I'm uninsured, so every specialist visit makes me cringe. I was kind of happy that the last urologist made every prescription he wrote me PRN.

It's good you're willing to take care of yourself and look at the illness as something to cope with and not the enemy. A good attitude goes a LONG way with this illness!

[klite]

After discussing everything yesterday with my doctor, he felt that there was no need to send me to another uro at this point in time. I'm going to work closely with the naturpathic doctor for the next 3-4 months and see what happens with that. From my conversation with both doctors, it sounds like I have a mild to moderate case of IC, so diet changes should go a long way to helping me avoid intense flares.

I'm also not going to take any meds right now either. I've been taking just OTC pain killers and pryridium (from my doc) when things get particularly painful. I haven't had any severe pain though since I stopped with downing all the cranberry stuff. Now just thinking about what I was doing to my already sore bladder makes me cringe.

I'm also feeling lucky that I live in Canada -- all of my doctor visits, specialist or otherwise, are covered (not the naturpath stuff though). Which is good since I've had tons of various diagnostic tests performed. And I also have my regular doctor and naturopathic doctor working at the same clinic, so they can work with one another now to help me. I am VERY lucky.