No Gloms but Sure I have IC

[Fluffersmom]

Hi-about 7 months ago I started experiencing a lot of bladder pain as well as urgency issues. I have had UTIs in the past, but not many. The last was 5 years ago.

I was put on 2 full courses of Cipro with no alleviation of symptoms. I did some research and discovered the malady called interstitial cystitis. The symptoms were exactly what I was experiencing. The pain was getting very severe-like a hot knife in my bladder. Pressure on bladder was excruciating-had to stop wearing pants, etc. I would get up 5 times a night to go and one time in the day went every 6 minutes. The pain seems to be more related to pressure in/on the bladder than what I eat. For example if I pass gas, pee or pass a stool I will feel better.

I went to my internist and told her I thought it was IC. The cytology was negative for everything except inflammation. I had a full pelvic sonogram and a CT Urogram. All negative for bladder cancer and everything else. They showed nothing. The Uro did an in office cystoscopy and found a small "pink spot" in bladder but said he didn't think it was anything.

The uro insisted on a hydrodistension under general anesthetic. I have no insurance. By now I have spent close to $10K for the various tests and duplicative urinalysis. (I live in DC area where health care is hideously expensive.)

Anyway, a week ago I underwent the hydrodistension under gen. aneth. The uro resident told me in the recovery room that there were no Hunners ulcers or glomurations but that I had a mild form of IC. At the same time the resident is telling me this, the uro is telling my family in the waiting room that I have no glomurations so therefore do not have interstitial cystitis.

After the distension, I felt great. All pain gone, etc. Unfortunately, last night I woke up at 2 am with the knife in the bladder sensation, as well as numbness in genitals and tingling. So, the distension "cured" the problem for a week.

I am at my wit's end because I am certain I have IC and am in a lot of pain, but the urologist, who's board certified, says I can't have IC if I don't have glomurations. My internist put me on some awful drugs which dried up everything and caused my hiatal hernia to come back. I actually ended up vomiting blood-a whole other story, resulting from being on the drug for too long. I begged her to give me something else but she wouldn't. Finally I just switched to the OTC stuff for bladder pain. She won't give me any pain pills.

I am very angry because the way I read the new AUA Guidelines, I never should have even HAD the hydro under general anesthetic in the first place. I have "simple" IC. Now my internist is asking me to "prove" that the Uro is wrong!! I am sending her the new guidelines.

Since I literally walked into the internist's office with a diagnosis 7 months ago, I am really angry and fed up with the whole medical system and their arrogance. I can understand their wanting to rule out bladder cancer but once that was done and the uro did his in office "peek" (for $600), why would he force me to go through the hydrodistension under general anesthesia? Greed?

Other than the Guidelines is there any research anyone can point to about the percentage of people WITHOUT glomurations who do have IC?

Should I just dump both these doctors and start all over? I live near Baltimore, so I am inclined to tell them to [fill in the blank] and go to Johns Hopkins. I don't have the money to pay for a whole new set of tests.

Any help or advice you can give would be sincerely appreciated. IC is terrible because you look okay. My friends/relatives are sympathetic but don't really understand the pain, so it's good to talk to people who do.

[passion4life]

I am so sorry to read about your frustrations. Being sick is difficult enough. When you add the frustration of not receiving the help you deserve it is enough to pull your hair out with your hands.


This site lists several caring and compassionate IC doctors. Perhaps there is one listed in your area. This journey has so many people who are willing to help us. I pray you find your Light and your relief.


I do not have Hunners ulcers or glomurations but I have been diagnosed with IC. My urologist performed a cysto/hydro under anesthesia and was able to provide a correct diagnosis. I was referred to the urologist by my gynecologist. Perhaps your doctor can refer you to a doctor that specializes in IC.

Continue to fight for compassionate care from your doctors. You are most deserving of adequate treatment. I truly believe everything you need will be provided. Don't give up! Have the best day you possibly can

[ICNDonna]

I agree that seeing a different doctor, at least for a second opinion, is a good idea. You shouldn't have to repeat the tests --- the results can be sent to the new doctor --- or you can ask your doctor's office for copies of your records. They don't have to give you the originals, but you have a legal right to copies. There may be a charge for the copies, but it shouldn't be very much.

If you scroll to the top of this page and click on Professionals, you will find a list of medical professionals --- support groups are also listed there and they can be very helpful in finding caring, thorough physicians.

Warm hugs,
Donna

[klite]

I can relate to your frustration of going through all of those procedures, only to be told, well, not much of anything. I had the same experience: My MD thought IC and was also sure that I had a damaged bladder. But when I went in for a cystoscopy with hydrodistention, my results came back as "irritable bladder." I had a healthy bladder (whew), but the uro said it was just irritated looking, I was drinking too much water, and that I do not have IC.

When I first heard this diagnosis, I was upset. I had really thought I had found an answer to all of my pain (IC), but after a few days, I started realizing that I have a healthy bladder ... I just needed to take care of it and have patience while it heals.

Basically, my "mild IC" was caused by diet and stress. Not the answer anyone wants to hear (because it is easier to take a pill than to change your lifestyle).

I now know that I am allergic to gluten, lactose, and sensitive to acidic foods. Years spent under intensive stress worsened how I my bladder felt - I was housebound for a good while because of all the pain. Over the past year, I have completely changed my lifestyle (job, future plans, exercise, diet).

Anyways, it is quite possible that you have food allergies (gluten seems to be a big contributor to bladder pain) and the extra stress of being unwell is keeping you feeling unwell. I know, it sucks. Please consider looking at your diet closely -- I ate wheat products my whole life (30+ years), thinking nothing of it. Only in desperation to find relief, did I finally cut it out my diet. 10 months later, I'm doing so much better. Sleep throughout the night, even ate some sundried tomatoes last night.

Good luck in finding out the source of your pain.

[earthlady]

I have read that only a small percentage of people with IC/PBS actually have the glomerulations and ulcers but I don't know what research is available to support this. I really do wish drs. would stay current on this condition but a lot them seem to still use their own (outdated) guidelines for diagnosing. My first uro also told me I didn't have IC because I didn't have the glomerulations or ulcers but the third one I saw said I most definitely did have it. I found a good one who started treatment right away, but had to go through a few in the beginning.

[Fluffersmom]

Thanks

Thanks everyone. I am pretty sure that I don't have any sort of food allergies and have had no change in stress. At this point, I'd be thrilled to have almost any diagnosis (other than bladder cancer which has been ruled out), just to get on with it.

I think there are a lot of urologists out there who truly think they are experts on everything urological. This clearly isn't the case. I wouldn't expect every urologist to be an expert on this rare disease. They make their money off prostate problems!!!

[earthlady]

Boy isn't that the truth! When or if I ended up being the ONLY woman in a waiting room full of men I already knew what specialty the doc was an 'expert' in. Too bad I didn't have a prostate.

[Fluffersmom]

You got it. If you want a prostate, just grab one of the numerous disgusting plastic samples they have lying around their offices.... The first URO I saw, I thought, "I think I am in the wrong office...."

[earthlady]

Ha Ha Ha! I should have grabbed one of them and said "I don't have one of these, now what are you gonna do?"

[Fluffersmom]

They take themselves so f'king seriously. I thought of pointing to one of the phony prostates and saying "What on earth is that? Plastic dog poop? Whatever it is, can you please cover that disgusting thing while I am in your office?"

[vivsmom]

cysto talk

My urogyne quoted a study in Sweden that "20 women who wrer pregnant and agreed to have a cysto (why?) all had some gloms or ulcers.
I found out that my IC is mild.

Now on to repairing and restoring my bladder!

I'm glad my office is Uro gyne- all ladies except for the partners that are in the waiting room. Is is werid that I notice the same patient's now?

Peace!

[earthlady]

I read a while ago that there were a large percentage of people who they discovered had the gloms and ulcers and pin point bleeding but were without any bladder pain or symptoms of bladder problems. They didn't know why some people were in pain and some were not even though they all had the glomerulations and bleeding. Hmmm- I'm starting to wonder if this whole condition is more of a nerve hypersensitivity than anything else.

[kadi]

It used to really annoy me to sit in the urologist's waiting room (usually for over an hour), and find only golf and hunting magazines.

Some doctors still use hydrodistension for diagnosis because some patients actually get relief from their symptoms for a time afterwards. Sadly, I was not one of them, but it was still worth it to have the pictures to take with me to new urologists or specialists.

I had the same experience with disagreement in the operating room. When I came out of anesthesia, I asked the recovery room nurse if I had IC. She said yes. But the doctor went the waiting room and told my mom that it might be IC, but it could also be a transient irritation and could go away by Christmas (I had the cysto/hydo in October or November). Later, every doctor who saw the pictures from the cysto/hydro confirmed IC.

But at that time, of course my mom latched onto "maybe it's not IC". Because my grandmother was dying of cancer, my brother was serving in Iraq, my uncle was undergoing cancer treatment and my sister in law had a high risk pregnancy - my family did not want one more problem, so most of my family treated me very impatiently and in some instances, quite cruelly - pretty much blaming me for not being ok by Christmas. It was by far, the saddest time of my life.

The only reason I still have a family is that my mom developed mild IC and kidney stones. Her urologist told her that the pain from her kidney stones is the same as what I feel with IC. We also found out that my maternal grandmother had had episodes of bladder problems throughout her life. I think if the genetic tendency hadn't shown up, I would have lost my family.

I wish doctors would be more careful with what they say to our relatives. My doctor's being wishy-washy about my diagnosis damaged my relationship with my family for several years.

[Fluffersmom]

Kadi-Here's a thought. Next time we go to a uro office we bring all our old Marie Claires etc into the office and just dump them there.

Seriously, I am sorry you went through this. Glad your family issues are resolved.

I too believe in fur therapy. My himalayan Fluffernutter has been a constant support. Doesn't ask what the doctor said when I get back from an appointment. As a matter of fact, and this is strange, whenever I go sit on the toilet, no matter what time of day or night, he appears. I pick him up and give him a good cuddle. If it's at night I bring him back to get with me. Maybe he's learned that toilet sounds=cuddles.

Take care.

[earthlady]

I don't know what I would have done without my fur baby to hold on those nights when I was awake in pain. I think she secretly wishes I was still in pain so she would get hugged all night.