Possibly misdiagnosed for a third time?

[zionsmommy]

I have recently been diagnosed with interstitial cystitis, after twice being misdiagnosed ... once with PCOS and then again with Endometriosis.  I'm questionning if I truly do have IC because I don't and never have had urinary frequency, but probably the opposite.  I have extreme pelvic pain, that shoots up into my kidneys making them throb.  The pain is becoming worse, and it's gotten so bad I can't sleep and the pain is making me have nausea and to be dizzy.  I also have been constantly running a fever of at least 99.5, and that is even with advil and tylenol.  I'm getting so frustrated because I can't work, I can't sleep, I can't go to school, and I can't be the kind of mom I want to be.  I'm having to be such a burden on everyone because of how they have to go out of their way to take care of me and my son since I've been so sick.  I really just need help, and none of the medications seem to be doing anything at all!  Does this sound at all like IC, I haven't seen any research that sounds like this at all.

[David A Burks, MD]

HI,  
To have IC you have to have pain, pressure or discomfort in the bladdder, and either urinary frequency or the constand urge to void. If you have endometriosis then you have a reason for the pelvic pain. It doesn't sound like you have frequency or urgency, so the diagnosis of IC is in doubt. You need a kidney x-ray or CAT scan to rule out a kidney stone in the ureter as a cause of the pain radiating up into the kidneys./  A CAT scan can look at the whole abdomen and pelvis for other problems.  If you haven't had one to date you need a cystoscopy ( look into the bladder with a scope) to rule out/in IC vrs other problems. Your Urologist/Urogynecologist should be able to sort out the issues and get the correct diagnosis.  Good Luck

[kathi1981]

Hey there zionsmommy! I was just reading your posting and was wondering if anyone was able to help you yet? I myself have IC and your suffering doesn't sound like it. Though I would love trying to help you. Can you tell me how they have come to the diagnosis IC? Did they take a biopsy from the bladder?

How long do you have these symptoms? What blood checks did they make? Did they test your renal function (urea and creatinine in the blood)? I am wondering if a chronical nephritis could maybe fit your symptoms.

[zionsmommy]

They didn't do a biopsy, but he did do the hyperdystintion (sp?) and some potassium test.  They also never took blood samples.  I just switch doctors and she says that the symptoms can be different in each person.  I had a cat scan an other than a cyst which is normal for kidneys everything in my renal system and abdomen were fine.  I was diagnosed 4 months ago.  For as long as I can remember I have had at least 1 uti a month, which with that I did have the frequency.  There is a lot of blood and protein in my urine everytime - infection or not.  I just started with this new doctor and so I'm going to give her a chance .  I've already told her that I was questioning the diagnosis.  She also thinks I have fibromyalgia on top of the ic, so that could be why I'm having different symptoms with my ic.  I may have her do a biopsy just to make sure, so I dont' have to live on medicine of the rest of my life, and to just make sure of what it really truly is ic.  I just feel so depressed because so far nothing has been able to help!

[kathi1981]

Hi again! Interesting that you've had so many utis... thats how the whole thing startet with me too. But after that one uti 10 years ago the pain didn't disappear with the treatment and I began to have the "typical" IC-symptoms: Pain, urge, frequency and all that also when I had totally sterile urine. Got worse every day.

Interesting thing is that (at least here in germany) some urologists categorize my problems as IC and some say it's only a condition similar to IC, caused by overreaction of the immune system and that again either caused by all the utis I've had (maybe also by fragments of bacteria in the bladder tissue) or by the antibiotics I therefore had to take... Did you have to take lots of antibiotics?

By the way the potassium test is positive when the glucosaminoglucan-layer in the bladder is destroyed/permeable and thats a condition that does not only fit IC but also other chronical cystitis types. Did you have hunner's ulcera in the bladder distention? I have no hunner's ulcera but biopsy looks just like IC.

I hope that you find your correct diagnosis soon, an -even more impotant I think- a treatment hat gives you relief from pain! The drugs that you mentioned (advil and tylenol) do barely help with my type of pain. Best pain medication for me is atarax (hydroxyzine, it's an antihistamine and works anti-inflammatoric in an IC-bladder ) for long-term-medication and buscopan in case of convulsions, to mention just two simple things. I hope I will hear somithing good from you soon. I totally know how you feel. It took me four years to finally get my diagnosis and treatment that could help me! I had to go through phases of bad depression too. And as I am not cured, I now have still bad phases where I think I can't take it anymore! But life is worth fighting because of the good days -as you are a mum you definitely know that!

[ljlu]

I've had IC since 1993, the Hydrodystention should have shown..( forgive my spelling here lol). "Peticial hemoraging on the walls which is the hall mark of IC..with blood in the urine and frequency 40-50 times a day, inflammation of pelvic area, low capacity bladder etc..A strict IC diet helps some but not always
..I've never had a UTI in my life or endo metreosis.( again apolgy for spelling)..bad pain day for me so brain is screwy lol
.. That's why I'm in here..I don't think you have IC either..I did find out the hard way that all urologists don't know that much about IC..One Urologist called it "A  new fangled yuppy disease like Fibromyalgia">..imagine?? I walked out of his office fast.
Have you had a Urol CT SCAN yet of the renal area? Make your MD does one. Good luck..be happy you don't have IC..Be careful of the medications certain Md's hand out..some cause urinary retention and that hurts a lot if you do have IC....Best of luck..don't stop looking until you find one MD to diagnose this for you correctly. Take control of your own health and go with your gut, and don't stop until you have real answers and help.

[zionsmommy]

They did they hyperdylation as well as the potassium test.  I have just switched doctors, and am having another sugery next week, where she will do a biopsy of my bladder as well as redoing what the other doctor did (hyperdylation and potassium).  She says my symptoms are not something that would make you think that I have IC.  Although I was having UTI's once a month if not more for years.  My big thing that has always made me wonder if it was IC is that I don't have urinary frequency at all.  I only urinate may 2 times a day 3 at the most.  I have extreme pelvic pain, and can't be up for more than 30 minutes.  The pain is un barable and keeps me in bed most of the time.  After the surgery next weeek it will give her an idea of what to do next.  None of the IC medications have ever helped me at all.  She depending on what she finds when she does the surgery will probably end up sending to a pain specialist so I can have a normal life.  It has ruined my life the last several months and have been keeping me from living liffe.  I'm just hoping this gives her some answers as to what move to do next.  I just want my life back!  At this point I'm will do anything!
I hope you get some relief soon as well.  It's a terrible thing to deal ith and I feel so sorry for those who have it  I know its hard for me because I know someone who has it, and it doesn't cause her any problems, so of course she can't understand why this is affecting my life so badly.  It's hard because it's something people don't understand.

[zionsmommy]

I also always had blood and protein in my in urine, but never had frequency except one a month when I have a UTI.  I've tried doing the IC diet but nothing I do helps, other than laying in the fetal position in bed, and that's no way to live your life, and I don't want to live my life this way I'm only 25 and a single mom to a beautiful 3 1/2 year old boy.  It kills me I can't play with him and run and chase him or take him for walks.  My parens have and church family have really stepped up and helped with him so he is constantly being entertained.
My doctor also told me I have fibromyalgia ontop of my IC.  But I learned from being in medicine myself that in some cases it's just something called "chronic pelvic pain".  I know that seems to be a crappy answer because there's no treatment for that either.  You can try muscle relaxers, Lyrica, anything really that helps with nerve pains, you would be surprised how much that may help.  If you are having that frequency that often, then yeah I would say it is IC.  It's hard to admit, and I'm still in not wanting to believe I have it, just because it can't be cured.
This disease is something tha they don't know a lot about, and I've been told by my new urologist that most of the times they say you have IC when they can't find anything else wrong.  Also she suggested if after this surgery comes back saying I don't have IC (which now I'm beginning to think I do) then she is suggesting going to an OB/GYN to see if there's any probles in that area.  I hope you get some answers and can feel better soon!

[zionsmommy]

Yes they did the hyperdylation and potassium test.  I'm actually doing it again by another doctor November 13th, where she will also take a biopsy of my bladder.  As you know from having this done it's not a fun experience and I've heard from someone else that the biopsy is even worse to recover from.  Now that I have a new doctor I do feel confident by her doing this it will give her an idea as  where the next step should be.  All the IC meds have not worked for me at all.  They did the IC coctail with made thingsa million times worse, and then elmiron, aterax, and amatriptalin (sorry about the spelling). After she takes a look and see's what her results are then that's when we'll decide to go next.  She says I'm one of those rare patients that doesn't have all the symptoms of IC but I do have some ... she jokingly calls me a difficult patient.  I don't have urinary frequency, infact I only urinate no more than 3 times a day.  I do though get UTI's at least once a month, until the first doctor opened my urethra, because mine was too small causing not enough urine to get out and causing the uti's.  My case is just weird ... nothing is ever normal for me, it always has to be to the extreme, lol :)

[David A Burks, MD]

Hi Again,  I reviewed the postings above.  With no frequency or urgency, voiding only 3 times per day, the diagnosis of IC is still in question and other causes of chronic pelvic pain must be ruled out.  If you haven't had one, you need a laparoscopy by a gynecologist experienced in pelvic pain to rule out endometriosis, and other GYN causes of chronic pain.  Ideally it should happen at the time of your cystoscopy and hydrodistention as a combined procedure by both doctors.  If one, the other or both studies find a problem, then you have your diagnosis.  If both are negative then I would recommend that your doctor try intravesical lidocaine with bicarbonate solution into the bladder to see if you get pain relief. It's a daily for 5 day instillation into the bladder at your doctor office.  If the pain resolves or gets at least temporarily better then it helps point to the bladder as the source of the pain.  Good Luck.