Not Diagnosed But Convinced!

[ganskagrl]

I am 26 years old and am on my 2nd urologist. My first urologist did an in office cystoscopy and said that my bladder is normal that I was suffering from Overactive bladder. I tried 2 different medications used to treat overactive bladder. In the mean time I called the office several times because I was constantly in pain and spent so much time in the bathroom it was exhausting. He told me he wasnt willing to do any further testing that his diagnosis was overactive bladder and that I need to talk to my family care doctor to learn how to deal with the pain - that overactive bladder is a painful condition but you have to be patient and give the medicine time to work (This doctor has OBVIOUSLY never felt the pain that I feel or like most of you feel). So I contacted my family care doctor she gave me a referral to another specialist. This urologist did an exam (very elaborate) and said the muscles surrounding my bladder are EXTREMELY weak and she wants me to go to therapy and try a medication called amitriptalyn (sp?) She did mention Interstitial cystitis but didnt want to diagnose me with it because she doesnt like to give people labels and she is hoping that the treatment she planned would help. Great right? So I take the 2 pills in the evening and do my physical therapy and things started to feel a little better. I went from going to the bathroom 15 times a day only to like 8. Big improvement. Then suddenly (after about 2 weeks) I started having the pain again. Debilitating to the point where I cant walk. My family doctor gave me darvocet. I would take 2 pills and still be in pain. So ive made an apt to see the urologist again on Friday. Though they seem to not care that Im in so much pain. I think Im going to demand they do further testing or do something to figure out what is going on. My family doctor is convinced that I have IC but the first urologist says everything looked fine. I dont know how you can tell by doing an in office procedure for less than a minute without checking other things or doing other testing. It just doesnt make sense to me. Right now I am using a tens unit, heating pad (my best friend) and sleeping. Resting helps a lot. However I have a 16 month old son so resting isnt something I get a lot of.

Has anyone else had any problems getting the urologist to do further testing? Unfortunately I have an HMO so I cant just up and go to another doctor and there are limited doctors in the HMO that specialize in this field! AHHHH!

[Claredale]

Welcome to the boards. Many of us know exactly what you are talking about. It is very frustrating to get someone to listen to you. My first uro told me that I was probably just depressed and didn't realize it since I had 2 young kids, blah, blah, blah.

Check the boards on here and see if there is a doctor that specializes in IC. Just because they are a urologist doesn't mean they understand all that goes with IC. If you can't find a doctor close to you on the list. Be sure when calling your next doctor, check to see if they treat IC patients. I go to a uro/gyno that specializes in pelvic pain. If you do need to go back to your doctor, print some of the information you have found on here and take to your doctor. I don't think I would want to see a doctor that doesn't want to "label" a patient. Does that mean she doesn't want to give a diagnosis to anyone. Isn't that what they are supposed to????

Hugs,
Tracey

Have you tried following the IC diet?

[leelee88]

First of all I want to say :welcome: to the ICN.

And office Cysto does not always show IC sometimes its takes differant testing to get a true Dx. Some Drs will Dx you just on your symptoms alone. Others do the potassium test and some will only rely on the cysto/hydro under anesthesia. The medicine you are on sounds like Elavil (Amitriptyline) this is a very good medicine for helping with frequency and urgency, it also helped my pain, but aparently it is not helping you. Hopefully this new URO will help you. But don't give up!! If this URO does not give you the answers you are looking for then find you another one. Good luck and I hope you get some relief soon..

[ganskagrl]

I did try the elimination diet for IC which my doctor actually gave me info on. I was to stay off of "bladder irritant foods" for 48 hours and then add each one of those back in slowly. Most of the foods on there i dont even eat and the ones I do it didnt make a difference adding them back in. I can see what other info there is on the diet. But the info the dr gave me didnt help. And my dr is a uro/gyn. My first visit she actually seemed very caring and wanted to help me. But the calls to the office the nurse seemed like I was being ridiculous and that the medicine should be working so she doesnt know why Im calling. I asked for pain medication and she told me to up the medication she gave me but she doesnt prescribe pain medication.

[dverba]

The women here know what they are talking about! They have all helped me through my dx and are helping me deal with IC. Listen to them and it will save you time, effort and your sanity! I am on my 3rd. DR. 1st, gyn 2nd, uro, 3rd Friday is an IC specialist I am excided to go see. Pain seems to be the main issues we newbies have in common. You will hear diet, diet diet, and it is so true. Go to the IC handbook and read all you can. Most all questions are answered there. You can't find better support than here though. Glad to meet yah.
DeAnna

[Claredale]

I would keep trying to find a doctor that will provide pain management. They are out there. I was lucky enough to find one with my 2nd doctor. Even though he wasn't that familiar with IC, he was willing to treat my pain while we were trying to find meds and other treatments to help with my other symptoms. I felt the urge to go the bathroom every 15 minutes. I could only empty a few drops, so my bladder just got more and more irritated with straining (not a good thing) and never being able to empty. When he realized my IC was too severe for him to handle, he referred me to a pelvic pain specialist who was quite up to date with IC. When she left my city, she thankfully referred me to another doctor that is my doctor now. All the doctors in his medical practice are uro/gynos, but he is the only one in the group that prescribes pain medications. Are there other doctors in your group?

I am only diet sensitive when it comes to citrus and of course citric acid is in alot of things!

Tracey

[Claredale]

These are 2 question and answers from my first doctor that specialized in IC that I found on another site.

Are pain clinics the best place to go to receive adequate treatment for IC pain? What if the physicians at the clinic are unfamiliar with IC? Should I try to educate them, or find a new clinic with more knowledgeable physicians? Try to find a place where the physician is interested and informed about IC. Physicians sometimes get irritated when patients tell them what they should do. I know you are trying to help and it helps me a lot when patients tell me what they think will work for them. But physicians who are not familiar with IC may still see the disease as something mysterious; they may not always be open to your suggestions. Try not to fight with a physician. Instead, use your energies to find a person who really wants to help you and believes you.

Why are so many physicians, even gynecologists and urologists, still unaware of IC and the pain that can be caused from it?
That is hard to answer, but I have to admit I was not aware of the problem of IC prior to working with Dr. Schmidt in Denver. He taught me all I know now and I am grateful that he opened my eyes. Fortunately, the situation is improving. There is now much more interest in pelvic pain then a few years ago. We have several patient and physician associations that are now interested specifically in pelvic pain: - ICA; - International Pelvic Pain Society; - A special interest group of the IASP (International Association for the Study of Pain) is interested in pain of urogenital origin.; and - The ICS (International Continence Society) had a workshop scheduled for its joint meeting in Denver in August, which was dedicated to pelvic pain.

I still email Dr. Ragi from time to time. My last email was to tell her that I am actually back to working full-time and enjoying my life again.

T83

[Annie2]

Your doctor told you to avoid bladder irritants for only 48 hours and then start adding foods back in??? I would have serious questions about that statement!!! The purpose of the diet is to create a calm and soothing environment in which an inflammed and irritated bladder can begin to heal and reduce inflammation. That doesn't happen overnight, or in 48 hrs. either. It takes a LOT more time than that for the bladder to calm down after being so irritated! Some people notice their bladder starts to feel better in 2 or 3 WEEKS after starting the diet and avoiding all irritants. Some take longer than that, sometimes 2 or 3 MONTHS before results are seen. If you start adding foods back in before the bladder has had a chance to calm down, there is absolutely no way to tell if your bladder reacts to a new food or not. It's still FAR too irritated to be able to feel a difference at all.

The IC diet is one of the best self-help tools we have and following it helps the vast majority of us. You have to follow it for quite a while, however, before you know if it works for you or not (and I mean months...not days). Have you had a chance to read the Patient Handbook on this website? If not, there is a link to it near the top left of this page. In the handbook you will find lots of extremely valuable information including detailed information on the diet (and very likely a lot more information than what you were given). I would strongly recommend you read that. Then, following the diet information there, give the full diet a REAL try and see if that helps you. It certainly can't hurt and just might bring you great results and relief!

[Claredale]

Annie, I was trying to figure out a way to say that about the diet. When I first started on the diet. I ate so much oatmeal and plain chicken for at least a couple of weeks. I knew those were 2 foods that I could eat and not feel as much pain. It took several weeks for my bladder to be stable enough to introduce other foods. That is how I finally learned that I was sensitive to the citrus. I don't have the pain like I used to, but when I was having flares, even though I knew my food triggers, I would go back to very bland food and drink tons of water since my bladder was more sensitive than usual.

Ganskagirl, it is good to get some sleep right now. I know it's tough having a young child and dealing with this. I had 2 young kids when this ordeal started for me. I didn't have the support of this site back then, so I really felt so stressed because I couldn't be the mom or wife or the active person I had been. I spent alot of time dwelling on my pain. Once I got my pain under some level of control, through the help of pain meds, I was determined to "take the bull by the horns" and researched everything. Like I said earlier, my uro didn't know alot about IC, but he listened to me and I knew he wanted me to feel as good as I could. He got me as far as he could, then referred me to a doctor that I will always be grateful for her compassion and knowledge of IC. If not for her and her experience, I know I wouldn't be positive and enjoy my life again as I am now. It's been a rollercoaster, but once I knew what I was dealing with it made it easier to deal with.

I hope you have a great doctor's appointment tomorrow and get some answers and the help you need!

Hugs,
Tracey

[born2swim]

I did try the elimination diet for IC which my doctor actually gave me info on. I was to stay off of "bladder irritant foods" for 48 hours and then add each one of those back in slowly. Most of the foods on there i dont even eat and the ones I do it didnt make a difference adding them back in. I can see what other info there is on the diet. But the info the dr gave me didnt help. And my dr is a uro/gyn. My first visit she actually seemed very caring and wanted to help me. But the calls to the office the nurse seemed like I was being ridiculous and that the medicine should be working so she doesnt know why Im calling. I asked for pain medication and she told me to up the medication she gave me but she doesnt prescribe pain medication.

Regarding the diet... I was told to do the IC diet for at least a month to let my bladder calm down and see if there is a food-bladder connection. My bladder didn't respond to any foods being added back except for tea/coffee/chocolate. Some things like carrots cause an increase in my urgency too. So... give the diet a long shot.. not just 48 hours!

[mom_in_ma]

Just to make you feel a bit better, I as 34 when I first had symptoms and both uros (old school male) refused to give me diagnosis or even acknowlege my pain. In fact, after that I pretty much treated myself with ideas from this website and eventually went into a two year remission. I didn't get a real diagnosis until I moved to the other side of the country. Keep trying...you WILL find a good doctor.

[ICNDonna]

Annie is absolutely right. Forty eight hours on the diet will very probably not help at all. My suggestion is to call the second urologist and make an appointment and ask for testing to either rule out or diagnose IC. When I was in the diagnostic process, I had tests for several months before I was diagnosed. The first urologist I saw treated my IC for thirty years before he retired.

I suggest you stick very closely to the diet for at least six to eight weeks and not add anything back until you feel better. And be sure to drink at least six to eight (preferably eight) cups of water every day.

Donna