Negative PST, Cysto, & Hydro....still IC?

[JenAZ07]

So I have to vent about this whole diagnostic process….I keep doing all the tests they want me to, with no answers and no relief!! After seeing multiple ob/gyns for what I thought was uterine issues (symptoms started after traumatic delivery), I got pushed off to GI doc who ran his own tests and found nothing, and now finally I am with a uro, who doesn’t seem to know what the heck is going on. I have all the classical signs of IC--- frequency, urgency, constant severe lower abdominal pain, IC belly, some food sensitivities (currently on a modified IC diet), blood work shows chronic inflammation, urine shows white blood cells (never a UTI), but despite all this…..negative PST (had delayed reaction…through me into a really bad flare, but since reaction was delayed considered negative test), negative in-office cysto, negative cysto w/hydro. Waiting for results of biopsy to come back, but my goodness, this is getting ridiculous. I though with the level of pain I was having (daily pain is worse than childbirth/appendicitis)….for sure the hydro would show pinpoint bleeding, but nothing. Uro says bladder looks normal, and I have normal capacity, but still have all classical IC symptoms. So what if biopsy comes back negative for mast cells? Then what? Is it possible to have IC and all tests be negative? Then what treatments would work best? Which should I try first? What if it is something else and I just wasted all this time thinking it was IC?

Sorry to vent, I am just getting super frustrated with all these tests and no answers. I just want to get better, and it seems like I can’t even start thinking about that since I am trying to figure out what is going on. Just starting to feel like my life revolves around my pain and trying to manage that versus living my life. I had a cysto w/hydro done last week (Fri.) and although I felt okay later that day, now my symptoms are getting so much worse. The pain meds aren’t touching the pain now….and the only thing that is helping is hot baths, but I can’t stay in the bathtub all day/night. Actually had to come back to work today and have just been miserable.

Not even sure what to tell my boss or husband, both of which just want to see me get better. Is this as good as it gets? (sorry for the pun)

[SharonA]

Jen...I really wish I had an answer for you. The only thing I can think to say is maybe you will get some answers from the biopsy. I sure hope so. I know it must be frustrating you so much to wonder what is causing these symptoms if the tests are coming back negative.

(((Hugs)))

[ICNDonna]

It's possible to have IC and have negative test results. I think it would be a good idea to wait for biopsy results. In the meantime, I think it's a good idea to stick with the IC diet.

Warm hugs,
Donna

[jjt001]

I was diagnosed based on symptoms and didn't have any of the diagnostic tests you mentioned. We basically went from a diagnosis based on symptoms (PUF questionnaire, pelvic exam, interview) to a first line treatment, which, on my doctor's recommendation, was Elavil. It helped tremendously, and now I can actually forget about my bladder most days (I had urgency, frequency and terrible pain prior to starting the Elavil). So, I guess my only "proof" of diagnosis is the fact that the Elavil worked so well on my symptoms.

In reading through your signature I didn't see that you were on any of the "standard" oral IC treatments of Elmiron, Atarax or Elavil (sorry if I missed something). Do you think your doctor might move forward with treatment and see how your symptoms react? Have you had any type of instillation other than the PST? Or do you feel that he wouldn't do it without a definitive diagnosis? I am sorry you are so uncomfortable now, I definitely remember how awful it was...

Does pyridium help? Before I started the Elavil the things that helped me were lots of water, early morning exercise (it seemed to help my pain throughout the day, but I could only do it early in in the morning when the pain wasn't too bad to exercise), pyridium or urised, hot baths and my "bed buddy" (microwavable bean bag). Diet also helped, but I couldn't really tell how much until I got my bladder calmed down a little -- now I know what my triggers are and still have to avoid them, but before the Elavil my bladder was so sensitive that I couldn't really tell if one thing was affecting it more than another. I was able to mostly keep it together with these helps, but had a lot of bad days. Elavil has been my lifesaver.

Good luck, I hope you can get something that will help very soon! :grouphug:

[elamar]

I'm in the same boat as you! Every test I have taken has come back normal including PST - I didn't even have a delayed reaction to that! Been tested for all diseases and cat scans and mri's are all normal. My hydro showed minor pinpoint bleeding in a few areas but was able to hold 900cc's of fluid. Don't know why, but the doctor never checked for mast cells. Overall, we can't find any reason for all the pain which is so damn frustrating. I do see an ic specialist in Philadelphia who I'm glad at least believes me when I say I'm in pain. She has felt tight muscles in my vagina and can feel heat radiating from the back of the urethra. Anyhow, the meds that helped me get over that constant need to urinate were ditropan xl (the generic version) and urelle (also the generic version). I had to start with high doses for a few weeks and have been able to wean it back to one a day for a while. I am no longer on the ditropan. I also take atarax in case, but don't know if I have mast cells - I don't have any known allergies. I am still hurting but it is better than having that constant urge. Your doctor may be willing to prescribe ultram or ultracet to help with pain. It is a non-narcotic pain reliever. Hope this helps you find some relief.

[JenAZ07]

Thanks for letting me vent. I know a lot of people have it worse off than me, so I feel guilty for feeling so down, but I am just getting so depressed from being sick all the time. I wish sometimes that I could just lay in bed/on the couch all day with my heating pad and take baths all day, but I have to work. My salary pays for all of my family’s bills and my husband’s business (which isn’t profitable yet) and our insurance is through my work. Just a lot of pressure.

Donna—Glad to hear that some people can still have IC and have negative test results. I have done the IC diet for a few weeks now…..my usual triggers are preservatives, sausage, pepperoni, peanuts, coffee, vitamin C (those are the ones I know so far), but some of the typical IC triggers don’t bother me a bit—soda, tomatoes, chocolate ice cream. Since the hydro I have gone back on a stricter IC diet hoping that will help cut the pain right away.


Jjt001—Nope, not on any typical IC drugs yet. Uro wanted to do the diagnostic tests before starting treatment. Take Phenergan (anti-nausea med which actually helps reduce pain—think it is the histamine blocker property in it), and they started me on muscle relaxers since I have had so many “contraction” like pain. Pyridium makes me really nauseaous, so I have started using Urelle instead, but dr said I couldn’t use that everyday. Urelle helps a little, but doesn’t cut all the pain. I just started using a different bottled water. Drinking tons of filtered water and getting worse, so we tested our water and wow--- it was very acidic, highly chlorinated, etc. Now I am trying spring water, hoping that helps. As for the other standard medicines, I am not sure what they are going to do…..I already take an anti-depressant, so not sure if I can take Elavil (mix the two?), but hopefully my uro will give me Elmiron on Friday when I see him next.

Elamar—Sorry you are going through this too. It is really frustrating. Just like you I have had several CT scans (4 in the last 6 months), 2 MRIs, upteen ultrasounds. Glad your dr believes you are really in pain….my dr believes all my symptoms, but my uro doesn’t know how painful IC pain really is. He seems to think that it is just a little uncomfortable. I actually see a pain management dr for the pain, and they give me some pain meds, but they aren’t enough to really touch the pain. (I can’t take Utram or ultracet because of the high risk of seizures when mixed with my antidepressant). Just wish the pain would go away and I wouldn’t have to take any meds. Wouldn’t that be great!!

Thanks for letting me vent yesterday. Today is better than yesterday, but still very depressed from being sick all the time. Actually contacted a counselor I was seeing after my son died to see if she could get in me to talk in the next couple of weeks. Think that would be good for me. But thanks so much for all the support here. Although my family tries to understand, they really can’t….so it is nice to have people to talk to that really do understand. Thank you.

[karen10]

Jen -- I'll check with my nurse, but I think they consider a delayed reaction still a positive, (even if not technically a positive test), they will start treatment for IC. They also go to all the IC conferences and said that the newest diagnostic procedures are based on symptoms, history, neg labs. This is because there is no definitive test for IC yet. PST is accurate in over 90% of cases according to the research, but doesn't always catch it. That must be very frustrating for you! I agree though, start with the diet and see if that helps. I hope you find an answer soon.

[karen10]

Hey Jen,
I was able to email Dr. Theoharides and I asked him your question: "If they find no mast cells in the bladder, can it still be IC?" Here's his answer (BTW he does extensive research on the role of mast cells in IC):

Unfortunately yes. Firstly, most mast cell accumulation is found in the
detrusor muscle of the bladder and US urologists do not tend to biopsy
the muscles, while European urologists do. Moreover, there could be
"neuropathic pain" where the bladder sensory nerves have become
irritated and fire in the absence of any major pathologic finding. What
has she been on in terms of treatment? One can try

Hydroxyzine (Atarax) 50 mg at night or
Doxepin (Sinequan) 50 mg at night or
Amitriptyline (50 mg) at night or
Tramadol (Ultram) or
Gabapentin (Neurontin) 1200 mg per day

together with CystoProtek (4 capsules per day)
for a few months.

[GriffsMommy]

I'm so sorry to hear you're having such a tough time getting a diagnois.
I did want to tell you my story to hopefully make you feel a little bit better.
I started out getting the PST done and I did have a positive result. This was done at my gyn's office and when I tried to have them prescribe Elavil which is a very common first line treatment they would not prescribe it.
Since I have a PPO I decided to go to a uro on my own to try to start some of the oral meds I was reading about here. When I saw him he told me the only way to diagnois IC for sure was with the hydro/cysto. Like you he had me do the in office cysto first. He said he found some areas of "chronic inflamation" but was not willing to say this was from IC. He tried to put me on antibiotics for 6 weeks to make sure my symptoms weren't caused by an infection that didn't show up on the cultures. I didn't even last the six weeks because the antibiotic gave me a yeast infection which flared the IC even more and I was scheduled for my hydro/cysto.
I can not tell you how upset I was when I woke up from my hydro/cysto and the uro told me that my bladder looked totally normal. I remember crying to my husband in recovery and saying how can I have all of the symptoms and be in all this pain but have a normal looking bladder. The uro told me to wait for the results of the biopsy and we would go from there.
When I went for my post-op he did tell me that all of the biopsy samples he took showed large numbers of mast cells. This is when he finally agreed that I had IC and started me on some other meds. I don't know what I would have done if the biopsy had not shown mast cells.
I can tell you that after that uro trying some treatments with me that didn't work he told me he could no longer help me and I needed to see a specialist. With some research I found my current dr who is a pelvic pain specialist and a god sent. He told me that he would have never made me go through the hydro/cysto at all and my very high score on the PUF questionaire along with the PST would have been enough for him to diagnois me and start treatment. I'm guess that even if your current dr does not think the PST was positive because you did not respond to it at the time of the test there are probably dr's out there that would still consider that positive and that would be the only info they would need to start treatment for you.
I hope that you can get to the bottom of this and start treatment. :grouphug:

[Katrina]

PUF questionaire is number 1 on diagnosis.
I guess I would want to make sure you have gotten the opinion of more than one doctor.
The IC belly, blood work, and urine test is more than just based on symptoms in your case. Food sensitivities and delayed PST .....may not be possitive isn't 100% negative result either.
THERE IS NO TEST FOR IC THAT IS 100% ACCURATE. Bad luck amoung IC patients seems to be common so is it possible to get a negative result in both and still have it...yes it is but it is also possible that we are missing something.
The goal is to get you feeling better so because of that I would do what works and if that means avoiding some foods than I would continue that.

I also think that it is quite possible that there are doctors out there that would consider a delayed reaction a possitive result.

http://icandme.9.forumer.com/index.php?showtopic=440 possible misdiagnoses or contributing to your IC symptoms
http://www.ic-network.com/forum/showpost.php?p=258578&postcount=44 PUF test attachment



Good luck and not matter what is going on know your not alone here. Struggling with diagnosis is something we know well...as well as the symptoms. :grouphug: Good luck!

[JenAZ07]

Karen –Thank you so much for asking the dr about that. Guess I just need to sit tight and see what the biopsy reveals. Uro told my hubby that even if the biopsy revealed nothing, they would still start IC treatments (not sure what meds they will start me on b/c of the ones I am already on—anti-depressants (so no Doxepin or Amitriptyline), Requip (which means no Neurontin), and no Tramadol (b/c of risk of seizures with anti-depressant). I think Elimron and/or CystoProtek and Atarax I could do. Is CystoProtek the same thing as Elimron?

Nice to know that even if there are no mast cells it could still be IC. Just don’t want to waste time treating IC if I don’t have it. I really want to get pregnant again soon (lost my son about 8 months ago), but we are waiting to try and figure out what is going on with my body first. I was really hoping to feel better and be on my way to trying for a baby by May.

Christine—thank you so much for sharing your story with me. What types of treatments did you start with? I read that part of the reason for the PST is to figure out what treatments will work….and my uro says that even though it was a delayed reaction (put me into a really bad flare about 30 mins after I left the uro’s office) he considers it a negative test. So would Elimron even help? Really not sure what route to go with the treatment, and feel like I don’t have much time to waste searching for that right combo—see above about wanting to get pregnant again. Just trying to figure out what would be the best line of treatment first. Is you dr a urologist or gyn? I am currently seeing a uro for all these tests, but am scheduled to see a pelvic pain specialist (gyn) at the end of Feb. who is a self proclaimed IC specialist. Hopefully he will have better insight also.

Did you feel better after your hydro? Uro says there is a chance at remission from the hydro, but didn’t say how long I would have to wait to see if that was going to be the case. I felt fine the day of surgery (not any increased pain), but in the days after, it was really bad. It has been 5 days since my hydro and seems like it is progressively getting worse, not better.

Thanks for all the support and replies. Sorry for asking so many questions, just seems like the drs don’t know much about this condition so every time I ask him a questions, I get the “good question.” That doesn’t answer it. I am starting to suspect that my uro doesn’t treat many IC patients.

[karen10]

Jen -- first, so sorry to hear about your son. How difficult that must be. :pray: CystoProtek uses a combo of natural supplements which have some components that make up the protective lining of the bladder. Other ingredients have anti-inflammatory properties (which work on mast cells) and overall it's supposed to help replenish the lining of the bladder. Yes, it's supposed to work like Elmiron. The studies that I've read have shown that CystoProtek has had success rates of 80-90% in early diagnosed people, as well as good success in some that have more severe IC. One person had been home with IC for 15 years, and nothing helped. She finally tried CystoProtek and within 8 months was feeling well enough to travel again! Personally I like it because it's natural, not something that's going to give me any side effects or something my liver has to work hard to process. Elmiron has good success in newly diagnosed people too, but I just don't do well with meds. I'm very sensitive. Hope you get this figured out very soon! :)

[GriffsMommy]

Jen,
I'm glad my story could help you in some way. My treatments started out with oral meds. I believe that a large number of dr's prescribe Elmiron right from the gate because it is the only oral med that is FDA approved to treat IC. I think they also prescribe this first because of the fact that it can take months and months to see results. This being said Elmiron was the first oral med offered to me. I wanted to try Elavil right away as well after reading about how many people were on it here on the boards.
However my gyn was unwilling to prescribe it and that's when I went to the uro who did all the other tests. He did end up putting me on Elavil and Urelle for bladder and urethral discomfort. He then wanted to start me on DMSO treatments. I wanted to try rescue instills but it was clear he was not familiar with these and only knew how to do the DMSO. I have heard it is a life saver for some but it was not for me. After that he did not know how else to treat me and suggested that I see a specialist.
I did go and see a uro in Baltimore who was known as an "IC specialist" but he basically told me that he wasn't going to be seeing IC patients much longer due to the fact that it was too frustrating for him since he was finding he was unable to help so many of his patients. If he finds it frustrating for him he should try being the patient who has IC!
Anyway, the dr that I see now is a gyn who is a pelvic pain specialist. He doesn't just deal with IC, he deals with everything that causes a patients pelvic pain. It is so refreshing to have a dr who is willing to treat all of your problems and not try to push you off on another field saying that they think your problem must be gyn instead of uro or vice versa and try to send you on your way. I have no idea if all pelvic pain specialists are as wonderful as my dr but if the dr that you are scheduled to see in Feb is half as good as my dr then I would imagine you would be pleased. My current dr is actually listed under the list of dr's here on the site.
Good luck to you and keep your head up. Though I feel like crap today, I have to believe that tomorrow will be better and I hope it will be for you as well. :grouphug:

[Pensive Girl]

hi...
i'm so sorry to hear about your frustration. maybe this will help?

my doctors are leaning toward me only having pelvic floor dysfuction. it feels like IC. and my bladder is just as inflammed as if i had IC, only they suspect i won't have the pinpoint bleeding. PFD is treated differently, ellavil....physical thereapy, behavior modifications etc.

mine, they think, stems from a double hernia operation i had when i was 6 WEEKS old. the scar tissue has formed aroudn the muscles that surround my bladder, urethra etc. so, i have to do a lot of internal and external massage, too. (sounds lovely, no?)

anyway, i just wonder if you could have that?


please look into it if you haven't. and, i'm sorry if it was already mentioned in all of the replies. i only had time to skim them

best wishes!

PG

[Katrina]

Although I totally agree with PG having overlapping symptoms and everything she said it shouldn't effect the blood work or cause IC belly, or cause white blood cells in urine so there would still be unansered questions with those things.

[JenAZ07]

Thanks for all the words of encouragement and advice.

Unfortunately, I found out this morning that the biopsy was clean for mast cells. My uro says he doesn’t feel comfortable saying I have IC even though my symptoms lead him to suspect it. He essentially told me that since all my tests are “technically” negative, he is not sure what I have….and proceeded to say that no medical professional has any clue about IC. I seriously think all he knows about IC is what he has read in a medical journal. It all sounds so rehearsed. Anyway, he wanted to do DSMO instills, but after reading how they are kinda disfavored now (in lieu of rescue instillations) I was not inclined to do it. Uro said that there is a lot of debate over whether DSMO or Rescue Instillations are better for patients. That just doesn’t sit right with me…..so I am definitely going to ask the pelvic pain specialist I see later this month (he is kinda my second opinion). In any event, I asked to be started on IC drugs…….and actually asked for the specific ones I wanted to try……Elimron and an anti-histamine.

The last part of the appt is by far I think the worst. The uro looked at all the meds I am taking (pain meds, muscle relaxers, Phenergan, Urelle, anit-inflammatory, anti-depresant, etc.) and told me that I should ditch all the other meds and just take Elimiron and the anti-histamine. Uh, hello. I would like nothing more than to be able to ditch all the other meds, but I wouldn’t be able to even semi-function from the pain! (Hopefully the Elimron and anti-histamine will take the pain away and I won't need all those other drugs!!) Again, leads me to believe he has NO idea about IC.

And the kicker……he actually told me I needed to lose weight (and I am not fat, just average) because skinny people handle pain better than heavier people. So as you can imagine, I left his office in tears as that is the first time anyone has ever told me I needed to lose weight. (My first thought was…and I should have said it......if I wasn’t in so much darn pain I would be more inclined to work out, but I am in too much pain to even think about that…..I am not even having intimate relations with my husband right now, and that ranks a little higher on my list than sit-ups!) Just makes me soooo mad. Like he was blaming me for his not being able to figure out what was going on with me. Needless to say, I am really looking forward to speaking with the pelvic pain specialist later this month and get his perspective. He is also a pain management dr, so hopefully he will have more of an idea of the pain that goes along with IC and all those other lovely issues…..like crazy muscle spasms down there.

Thanks for listening/reading and letting me vent. I know you all know exactly what I am talking about and feeling right now.

[windchaser]

idk about the c/h i have that sceduled on the 10th but my uro started me on elmiron after my in office cysto his exact words were "well your bladder doesnt look that bad" ugggg i still dont know what that ment but he says i have IC now i wonder what it will look like when he does the h/c

[hapamama]

Has your Dr. ever mentioned PFD? I have VERY similar symptoms to you, though not as severe, and my Uro believes this is totally pelvic floor related. In fact, he wants me to try physical therapy for awhile before he'll go on with looking in my bladder and such. I'm crossing my fingers that pt works, and that its not IC...after all, PFD is pretty much curable (with the right amount of work)!

I feel your frustration and really hope you get some answers and/or relief soon!!!

hugs,
Karen

[dhoffer]

Hi,

its been awhile since i posted but thought I would add to the current ones. Yesterday i had another cystoscopy done. Like before I peed normally when they asked me to go before hooking me up. they hooked all the tubes and wires and did the catheter and filled my bladder til I couldnt stand it anymore. then they told me to go so they could xray. nothing. I couldnt go. they tried to turn on the water, leave the room and nothing worked. I couldnt go. so they unhooked everything and i went. My biggest problem is leakage. sometimes gushes and they cant figure out why. I have had two surgeries to lift my bladder. everything looks great on exam but I still spend most of the month wet. I get about a week of dryness each month. my uro is still trying to figure out the problem. right now I take elmiron 100mg a day plus 7.5 mg of enablex. he has even tried 15mg of the enablex and nothing. I try to not eat things to irratate, i am trying to loose weight but they said my weight shouldnt be an issue.

My question is what d I do next? next month I am supposed to go in for the urodynamics test. if anyone has any suggestions I am open to them.
thanks
Dawn