Trigonitis

[sgoodrow]

Hi,

I have posted on this forum a couple of times with questions about elmiron, but am fairly new on hear. I have been so caught up with finding the right meds to help relieve my symptoms (frequency and burning mainly), that I never stopped to even think is it IC that I have. I had a cystoscopy in Dec. 08 and my urologist said that it looked red in the trigone area (the triangular area that sits right at the opening of the urethra I believe, at the bottom of the bladder). She said everything else looked ok. I am wondering if there is any difference between IC and trigonitis, or if they are basically the same disorder. Maybe this could result in different types of meds. I don't feel that I am having spasms inside my bladder, it feels like a low-grade burn down low, at some part of each day, I would say near the ureathra. Is there anyone who might have these types of symptoms? To be honest I don't know that my urologist has even diagnosed me with IC, she seems focused on just treating the pain.

I am currently on elmiron 100 mgs 3xday, hydroxizine at night. I am having a urodynamics test in mid-june.
I wish pain relief for everyone!
Stephanie

[NancyB]

Dear Stephanie -

Are you old enough to be in perimenopause or menopause. The symptoms you are having can be from low estrogen.

Hope this is helpful.

NancyB:)

[ICNDonna]

I was diagnosed with trigonitis before my IC diagnosis.

Donna

[sgoodrow]

Thank you for the replys. I am 37, I also have ulcerative colitis, which is under control. The burning and frequency started, on and off, this time last year, april of 08. Now the symptoms are usually present every day, to some degree. I've modified my diet, no tea/coffee, ect., but the symptoms are still there. Donna, that is interesting that your dx was trigonistis before IC. Maybe I should have the hydrodistention test to see if the whole bladder is affected.

It's funny, I just graduated nursing school in Jan. and I don't remember learning anything on these bladder disorders, just cystitis caused by various meds.

Pain free days to all!
Stephanie

[elamar]

You should ask your doctor about using antispasmodics which will help alleviate the frequecny/urgency/burning issues. The one that turn your urine blue helped me the most - prosed, urelle or utira-c. These are safer for long term use. Pyrdium is the one that turns urine orange is meant for short term use. There is also ditropan xl that can help reduce urge/frequency. Hope this helps. Good luck to you.

[sgoodrow]

Thanks for your advice elamar. I am actually on detrol, I forgot to mention that above, not sure if it is really working, maybe a little. But I will mention the other antispasmodics to my doctor and see what she thinks. The best to you!

[bellapazza]

I also had trigonitis before dx with IC and the Dr didnt seem to be concerned. I know that with a regular cystoscopy they cant see IC they can only tell if they do the hydrodistention. That is what they did for me--every test was normal until they did the hydrodistention and saw the pinpoint bleeding that confirmed IC. If it is IC then elmiron is the way to help the most. But yes sometimes antispasmotics or analgesics help. I didnt like any of the antispasmotics and the only thing that has ever madea difference is elmiron but everyone is different. Hope this helps

[sgoodrow]

thanks Bellapazza for your reply. I should probebly have that distention test, though I am little scared. Take care
Stephanie

[Briza]

Steph,
I was never dxd w/ trigonitis, just IC, but often my symptoms of burning and pressure ARE just in that trigone area that you describe. My IC meds (including pain meds, drinking lots of water, and diet) do help me for those symptoms.

I would also suggest asking your dr about one of the antispasmodics/analgesics that Elamar mentioned....there are many to try, are pretty fast acting, and each one of us may use one that we prefer over another for whatever reason with much success and for many these types of meds are mainstay of our treatment and are in different class of meds than Detrol and other OAB meds (seems that many with IC do not respond well to OAB meds such as Detrol, Ditropan, etc)....I use the bladder specific antispasmodic/analgesic Pyridium sparingly and only as needed with approval from my dr and pharmacist, but it is THE thing that helps me with that lower bladder area burning and pain that is my most frequent symptom.

Just an observation: if it seems your dr is mostly concerned with treating your pain, IMHO Elmiron and hydroxyzine (atarax) are not really the number one things for treating pain and burning. Yes, Elmiron may be very helpful for SOME patients in the longterm, and hydroxyzine does seem to be a very helpful treatment for many patients, BUT there are SO many other meds and treatment options to try for managing pain, burning, pressure, frequency, urgency very effectively and usually much more quickly than Elmiron and Hydroxyzine alone.
Elmiron, if it does work, usually takes months to a year or more to see results, and Hydroxyzine, tho it seems to be effective for many and if so gives much more immediate relief than Elmiron, does not work for everyone and not always for pain and burning like you describe.

I hope you find what works for you...it often takes much diligence and a cooperative and understanding dr who will let the patient give some input on treatment options, as some drs are very limited on what they know or what they are willing to Rx to help IC patients with the many different symptoms we experience. Best of luck to you!:)

[sgoodrow]

Thank you Briza for your reply. I am very grateful for your advice and the advice of others who have posted. It is so helpful to communicate with people who have IC and to talk about individual experiences.

I have found that my urologist takes a cautious approach when it comes to treatment. She prescribed elmiron, detrol and hydroxizine (I don't think the Hydrox. is doing anything), but when I suggest another drug to try or method to use(like instills) she's all for it, which is great in a way. I just wish she was a little more in tune with my particular symptoms and treatment, because I really don't know what would be the best tx. I am glad now to have found some ICer's who seem to share my symptoms (burning, pressure/urgency). Briza if you have a chance to reply, regarding the antispasmodics/analgesics, do you know if there are any that are more common and safe than others or that carry fewer side effects than others? I am definitely going to talk to my uro about the them and hope for the best!

Take care...Stephanie