How were you diagnosed? Holistic methods?

[evy]

I have been reading in my interstitial cystits book------ and read about all of these ways people were diagnosed..... The uro that I am seeing just went by 3 urine cultures that came back normal. Some the ways they test seem risky, at best........ like the one where they put you under anathesia and stretch your bladder w/ water!:loco:

I just have stabbing pain where my bladder is........ and sometimes when I pee...... my urethra burns........... so I have to drink lots of water to keep my urine weak.

Has anyone just relied on pain meds like Ultram or Vicodin or such? Is there a danger in doing this?

Does anyone use holistic methods?

DId your urologists usually use that little scope on you?

Lastly, does anyone have pain that radiates like towards your appendix....... or towards the left? My appendix is gone......

Just wondering.

Thanks

Shalom.

:pray:

Evy

:cat::cat::cat:

[GriffsMommy]

I had a PST done first done at my gyn's office where they put a potassium solution in my bladder which cause it to burn and they said this meant I had IC.

I then went to a uro when I was not happy with the way the gyn's office was willing to treat my IC. The uro did an in office cysto to take a look and make sure I didn't have bladder cancer or anything like that. After that he did do the hydro/cysto while I was under which is when they stretch the bladder. He also did a bladder biopsy at the same time and he then agreed that I did in fact have IC.

I am on pain meds to help with the daily pain but I am also on a lot of other meds to help treat my bladder which you can read in my signature. I have not tried any holistic approachs to try to improve my symptoms. I know there are many here who have so I'm sure they will chime in.

[Babs RN]

I was diagnosed after a cystoscopy with hydrodistention under anesthesia. I have had successive ones after the first that have documented the progression of my IC. Most people don't have progressive IC, though. I see a pain management doctor and take long acting meds as well as breakthrough pain meds.

Hugs,
Barb

[ICNDonna]

I was diagnosed by having a hydrodistention and biopsies under anesthesia. I am one who is significantly helped by hydrodistention and they have been a major treatment for me for all of my 33 years with IC.

I do not need or take full time pain medications.

Donna

[SharonA]

I was also diagnosed by the cysto/hydro with anesthesia. I take Elavil to manage the pain.

[Annie2]

I had several tests to rule out other possible causes of my symptoms including an IVP, an in-office cystoscopy plus a cytology test to rule out cancer and an ultra sound. Once other causes were ruled out, I had a potassium sensitivity test just to confirm the IC diagnosis. I have never had a cystoscopy with hydrodistention as my uro believes (and I agree) that test is not that reliable, is very invasive, carries some risk and, therefore, should be saved for a possible treatment option if other less invasive medications and treatments are not effective.

My pain is controled by taking Elavil (Amitriptyline) and physical therapy. I do not need and do not take narcotic pain relievers at this time.

[VickiB]

My diagnosis went similar to Annie's. Tests to rule out cancer, in-office cystoscopy, then a potassium sensitivity test.

I took elmiron, amitriptyline and hydroxyzine for a year, and saw great improvement. Then with a nod from my Uro, began to decrease the doseages until after 2 years I was taking none at all.

For the past 2 years, I've been relying on diet and good luck I guess. Sometimes my luck runs out and I treat symptoms with increased water, baking soda, Uristat, and patience. My Uro will not prescribe pain medication. I find the times I wish I had some narcotics to be only a few, short, periods out of the year. That's where the patience comes in I suppose.

Vicki

[bjcov]

Do you Elavil gals remember how long it took for it to work. I took, 12.5 the first night, no problem. 25mg 2nd night no real hangover. Then last night 25mg. I think maybe I'm sleeping a little better but can't really tell. My problem is the "gotta go feeling" but I can hold it. Just wondering since I really never have side effects (knock on wood) and was told that Elavil is something you take for the side effects. I basically feel the same, granted its only been 3 days. But I was prepared to be completely tired for weeks.

[LeeAnn]

I'm all for holistic methods but they don't work for me.....unless you count the diet. It helps a lot.

However, the diet alone doesn't do enough. I still have to have these meds to control the IC. It bummed me out for a while to think I have to rely on meds but now I'm just thankful to have something that helps me b/c so many people have tried everything to no avail. So I consider myself lucky to find some things that work.

[leelee88]

I was Dx by an cysto/hydro with anesthesia. I do think the Dr should try to do the less invasive treaments first. My Dr did not and I had complications. But I am still glad I got me Dx.

Another thing you might want to check out with your symptoms is PFD pelvic floor dysfuntion.

[redhead43234]

I started having major pain in Nov 2007, and after a sonigram showed everything to be normal, I had a PST in Dec 2007 which came back positive for IC. I started rescue intalls last week and have so far been feeling better.

[patricia1]

Evy after spending close to 5 yrs going from doctor to doctor trying to find out what was wrong I was finally diagnosed with the PST (potassium senstivity test) followed by the Hydrodistention with cysto. Of course like most others I did have the in office cystoscope in the beginning which showed nothing doing with IC (note: this test will not show IC)

For me Ultram is a big help and I take it daily. I also take Atarax, ultram and Soma when needed also lortabs when needed. I have tried Elmiron(caused hair loss for me), Elavil(caused major weight gain so I dont take), numerous overactive bladder meds(dont help me) neurotin(caused headaches). I also do rescue instillations which help to.

[hopeful1]

I was diagnosed by symptoms along with a KCI (potassium installation) test.

I was put on Elmiron, but that didn't work out. I am now just on Amitriptyline (Elavil) and Vicodin until I can get to the Urologist in March for medication recommendation(s).

I am also trying Cystoprotek (non-prescription) to see if that helps.

Also pretty strict with my diet. The diet suggestions here has helped alot, too. What kind of water you drink is important, also.

This is a great place for learning all about IC!

[Quinn24]

Hi Evy,
I think you need to do some further reading. Hydrodistension where they stretch your bladder is basically the best way to diagnose IC. Why do you think that is a crazy thing, this way your bladder can be stretched past your normal tolerance in an in office basic cystoscopy with mini camera and in the OR under anesthetic they can take biopsies, pictures, stretch out your bladder to the fullest to see the ulcers or glomurations or fissurs which are IC....So I think you might be the :loco: one on this topic.

[jjt001]

I was diagnosed using the PUF questionnaire and a description of my symptoms. My doctor is very well known for his IC work so I felt comfortable when he recommended that we start treatment before trying other diagnostic tests, such as a hydro/cysto. He generally does not do the hydros anymore unless someone really wants a definitive diagnosis before proceeding with treatment, although he acknowledges that the hydro isn't always definitive. He also does them for people like Donna, for whom it has really proven to be effective as a treatment. I started Elavil and have done terrific on it -- I notice my bladder very little anymore. Diet is also important, even though I'm not terribly food sensitive there are definitely things that will flare me. Go with what you're comfortable with -- this disease really requires some individual trial and error, unfortunately, and there is always time for more tests if they're needed.

[Claredale]

I was diagnosed back in the 80s by a urologist and thankfully he knew a little regarding IC. I was glad that he was able to look in my bladder since as most of the people on here, IC is so foreign, that I was so concerned that there may be cancer. Back then there wasn't a whole lot of resources to look at. Even now, I am pretty certain that I would want to have a scope done because my aunt had very similar symptoms as me, but she actually had a kink in her urethea so she didn't have to go through taking meds and treatments which she very likely would have done. She went to the same Pelvic Pain Specialist, who specialized in IC (and of course I just loved her!). I used to go to before our doctor moved to another city, but my loss is other patients gain since she is a fabulous doctor. She did refer me to a very knowledgeable doctor shortly after she left, so in a way she was still taking care of me. My aunt still has issues from time to time with UTIs, but she doesn't have to follow the IC diet and can drink cranberry juice and the usual remedies for it. I just feel safer knowing what is actually going on in there especially with the pain level I was having and had a 2nd hydro/cysto a few years later. The damage to my bladder was much worse, still no ulcers, but lots of blood and my bladder was very damaged. That definitely put a picture in my head of my bladder being like an open sore, so that made me very aware to watch my triggers.

I know we are all different and have to make our own way through this by doing our own research.

[bjcov]

Hi all, quick question. Didn't I read somewhere that IC symptoms can lessen when on your period? Or do I have that backwards?

I have been on Elavil for a week,Ic diet for 2wks. I have seen about an 70% improvement in my "gotta go feeling" So generally doing ok.

I am scheduled for a PST test Monday morning. Since I have been doing well should I do the test? If I do have IC then won't my bladder hurt after? Do I wanna irritate something that I have been working so hard at helping? Should I give this a little more time? The nurse at the office told me that I should do it, to get a diagnosis. But I don't wanna go backwards. What would you do?

[Janie88]

The worst bladder infection I had in my life was in October 2006. I was told at the hospital that it was due to a strep infection. They treated me with every antibiotic known to man (including a sulfur drug that made my eye lids swell closed.) I continued to have sharp pains, frequent urination, severe pain after urination, so I continued to see my GP who would prescribe yet another antibiotic.

In November 2006, I received the first written counseling in my life from my employer for being out of work 3 days without enough TOWP to cover it. I was out of work because I have a catheter for those three days, and there was no way I could come into work carrying a urine bag by my side.In February I received another counseling warning regarding being out sick one day in February without enough TOWP to cover it.

My GP continued to treat me with anitibiotics, both with injections and oral pills. This continued to be a monthly event, until my Dr. was not in (he had heart surgery) and I saw another Dr. in the practice. She walks in and said "Convince me" I asked Convince you of what? She replied there is nothing wrong with you, why do you keep coming into the office? I was in tears, I told her that I was in constant sharp pain after I urinate, pressure all the time, urinating up to 20 times a day. Then she replied, Look at your labs, and she put the lab sheet in front of me and shook it in my face, and said you look, everything is normal. At this point I was crying, I was so shocked by her actions I did not know what to say. She then asked me if I was having trouble at home, if I was depressed. I said I certainly am depressed, I am in constant pain, I cannot have relations with my husband with out severe pain for 24-48 afterwards. At this point, she said she would give me Detrol (sp?) LA, and she would make a referral for me to see a URO/GNO. This was late October 2007, my appointment was scheduled for December 20th. I called and asked if I could come in earlier than the appointment schedule 2 months away, but I could not.

I almost cancelled my appointment, because I kept thinking of the Dr. shaking the lab sheet inches away from my face, and saying there is nothing wrong with you. Also at this time, our middle son was deployed to Iraq. In November 2007, after a year of what I thought was a constant urinary infection, and with our son in Iraq, I called our company's employee counseling service. My counselor, Sara, not only helped me make it through the holidays with our son in Iraq, but she also helped me "vent" how I have spent a year of my life in constant pain, months and months of antibiotics, and yes we talked about the doctor shaking the lab sheet in my face!

I almost cancelled my appointment with the URO/GYN, because I was afraid he would also say there is nothing wrong with you. I kept the appointment, and my Dr. is wonderful! After the extremely uncomfortable exam, he said "You clearly have three thing going on here, "I imagine you are in a good bit of pain aren't you"? I cannot tell you how good that sounded. Then we sat down together and he explained I had IC, VV, and lichen scolosis. The first thing that popped in my mind, was thank goodness he will prescibe something, and I will be well in 10 -14 days. Then he explained that I would probably have all three the rest of my life. I guess I was not prepared to hear that. I had my first instill that day, with extra lidocaine in hope I could walk better. He prescribed Elmiron, Atarax, and Elavil. I continued to have 2 instills at his office every week. Last week they taught me how to do the instills at home. (It will safe money)

In this short period, 1 month, I have gained 10 lbs. I am following the IC diet, and when I "cheat" and eat a tangerine, I pay for it. One thing I would like to know, does anyone else have insomnia? Now not only am I getting up all during the night for the bathroom, when I come back to bed, it is like I have had 3 expressos. Last night I slept from 10 - 1 am, then I was wide awake so I got up and stayed up all night. Same thing tonight, it is 2:38 AM right not, and I feel like it should be 12 noon. I am wide awake, and cannot sleep. Is it the medicine? Which one?

I can see my counselor 2 more times (through the company I work for) and she has been great helping me through my husband and my sex life, and how to make adjustments, and to trust more in God. I have probably written more than I should, but boy it feels good to get that off my chest.:cussing: I think the next time I go to my URO/GYN, I am going to ask him to send a copy of his dictation to the Dr. that shook the paper in my face, and said there is nothing wrong with me:cussing: If anyone reads all of this, thank you or letting me vent:angel:

[ICNDonna]

Jan: I'm so sorry your son is in Iraq. My prayer is that all of everyone's sons and daughters will be home soon. :grouphug:

You asked about medications and insomnia --- you are on one medication that caused me to be totally hyperactive and sleepless. I was on amitriptyline for only a few days; my doctor said my reaction was unusual, but not rare. It also sent my blood pressure soaring to dangerous levels. You might want to ask your doctor about this.

Warm hugs,
Donna

[MarthaF]

I agree with Donna - amytriptyline can have a side effect that causes a rise in blood pressure and that could explain the symptoms you are having. Check with your doctor.

Also, there is a very good support group for Lichen Sclerosis on Yahoo Groups. You have to join Yahoo Groups to be able to access it, but the moderator, Dee, is very helpful and LS is treatable.

Martha

[Claredale]

Jan, I have dealt with insomnia pretty much since I was diagnosed 20 years ago. I went so many routes of going off meds, trying sleep meds (which my body would get used to) and even a sleep study. My brain is so aware of any time that urine is collecting in my bladder that it would wake me up or keep me from going to sleep, so I was up and down constantly and also when we lay down to go to sleep, our muscles relax which for me caused me to realize my pain easier since I wasn't busy and keeping my mind on other things. I would find a sleep med that worked for a few months, then I would start the scenario all over again. I am finally taking Rezorem which at first worked great. I still have mostly good nights unless I have pushed my body to much, which seems to be every wee lately so normally my weekends are spent catching up on my sleep because otherwise, I will be up most of the night like I was last night. I am grateful that I don't require alot of sleep, but going weeks, months then years finally took it's toll on my body. I am grateful that my doctor understands my insomnia and works with me to get through it!

Hope you find your answer!

Hugs, Tracey