does ic come on all of a sudden?

[kathyg]

Hello and thank you for this forum. A month ago I was up about 20 times in one night to urinate. I went to an ER as it was a Sunday and they did an US and found some small fibroids. I also had a urine check and there was trace blood so the doc put me on cipro. I continued to have urge and went to GYN due the fibroids and she put me on Enablex and this made me much worse, so I quit after two days. I went on to an urologist who did a cystoscopy and he saw a few small areas of chronic inflammation. He put me on macrobid even though I did not have an infection. He gave me utica-c as well and I felt much better after the cystoscopy for several days. I proceeded to take small amounts of benadryl at night since I read this could help and I was taking baclofen for a facial pain I have off and on. Last weekend I really felt the symptoms were subsiding and told the uro on Monday I had made headway and he sent me on my way with a script for Macrobid if I need it. This past Thursday night, I started feeling the same pressure to go and sensitivity down in my genital area. Since my husband and I had not had relations for so long, we decided to try last night. I now am back with intense pressure and urinating last night 10 times ,even on the utica. I am also taking diflucen he gave me to take on day two as uro instructed for any possible fungal infections. I am thinking I should go to a urogyn doctor, as my GYN basically shut the door as well. I appreciate any insight you may have. I do have a history of endometriosis and had laser surgery in 1985 and ongoing gastritis. I did have an UTI four years ago and had the same symptoms but it finally was over after about 6 weeks. I am 46 years old and my spouse keeps talking about when we can be intimate on a regular basis again. Thank you. Kathy

[mlzippy7]

Hi Kathy
First I wanted to say :welcome: to the ICN. I am sorry you are having a hard time.
Did a doctor diagnose you with IC? Maybe you could find a urogyn like you suggested below and see what they have to say.

As far as your question about if IC comes on all of a sudden.....it can. Some people have it all their life others develop it after a surgery or a catheter use. There are so many different ways people develop IC.

I hope you can find the answers you are looking for. I know it can all be so overwhelming when we don't know for sure what we have.

Take care

[SharonA]

Hello Kathy and :welcome: to the ICN... :)

For me, IC came on very suddenly. I was fine one day and in pain the next.

You didn't say if the uro diagnosed you as having IC. Did he explain what these small areas of inflammation might be caused from?

I do think it a good idea that you should try to find another doctor who will help you and give you some answers.

:) :) :) :) :)

[Dawnk68]

My ic, if I really have it has been coming on slowly. I was diagnoised by the potassium test and now I have found out by an ic specialist that that is not an accuate diagnostic tool in diagnosising ic. So now I am going to see him in a week and probably have a cystocope because he said that to be diagnosed any dr should see the lining of the bladder with his own eyes. So now I am going through the whole process over again. I was a diet coke junky and I know that I totally abused that which probably caused my problems. I am trying not to get down but it is hard and the diet is driving me crazy all my favorite foods are not allowed. On elmiron for 3mos and no sign of relief. Can't wait to have a dr that is a specialist and hopefully help me with a plan of action.

[LuvMaui]

My IC came on suddenly only 2 weeks after I had a hysterectomy. It was basically urgency, burning & frequency. It wasn't until almost 2 year later that the back and pelvic pain began.

[leelee88]

I had frequency and urgency, burning all my life. My pain and UTI feeling and diet sensitivity came on all of a sudden..

[dg2901]

I'd never had any type of bladder issues...woke up one day in Feb '03 with IC symptoms.

Hopefully you'll get some answers very soon.
Diana

[kadi]

My IC started July 10, 2003. Woke up one morning & there it was & it hasn't left.

[Briza]

Mine also came on very suddenly, day after Thanksgiving 2003. Symptoms of IC, VV, and Vulvodynia progressed from bad to worse over a period of 18 months nonstop flare. But with diet, time, rest, treatment, and a knowledgeable team of doctors, my symptoms have been very well managed for the most part and seldom do I get full on flares anymore and as of right now I have been in remission going on 3 months. Best wishes!

[crazy_beautiful]

I have always had the got to go feeling.. I am sorry you are having trouble. Maybe you can find a doctor who specializes in IC, and get him to do a hydrodestion on you. there are things that memic ic such as endo, they may want to do a lap and see.
best wishes on your road to diagnosis.

[Zygala87]

Kathy I was hit by that giant train of IC over-night. Had the typical treatment for a UTI but nothing helped. I was sent to a OBGYN and had a hydrodistention which helped and confirmed IC. The first thing I did was to go on the IC diet very strictly. It helped right away. I also bought "Prelief" and took it with every meal. In my case the Doctor gave me pain pills and said to stay ahead of the pain and take them. As time went by I felt better. It took Elmiron 3 months to kick in but it did. Many people can't take it and it often does not help. I just got lucky. Find a DR. who understands IC and go on the diet which you can find on this site. Baby yourself big time. Don't do anything, for now that can put pressure on your bladder like lifting something very heavy or a major house cleaning. Even walking a long way hurt me. I'm doing fine now. It's been ayear. I Pray the same for you. Keep us posted, we CARE. Hugs, Ziggy

[my3boysmcr]

Mine started after my very first diagnosed UTI in June 2005. I guess I always had the frequency because it wasn't until my back pain was so bad that I couldn't walk that I went to the doctor. It took many more UTIs that came back with clean cultures to finally have someone say last spring that I may have IC. I was actually sent to a local uro back in November 2005 but he was horrible. He did a cysto in office (with a freaking rigid scope!!!!) and saw inflammation but declared that it was from recurrent UTIs. Those UTIs were often founf to have blood in my urine but nothing grew in the cultures. Anyway, I was sent to a urogym last May and she put me through all of the usual tests. A mass was found in my bladder so a biopsy and cytology were also performed. I am on my 3rd specialist (4th if you count the uro that blasted the kideny stone that was founf in along the way) and I have found a good regimen that works for me. My frequency is down to 10-12 times a day and maybe 1-2 times at night. I am thrilled. Moral of the story, there is hope :O) I am not really diet sensitive for the most part. Citrus is the worst for me as are bananas.

[kathyg]

I want to tell everyone who has replied to me that I am very grateful for your wisdom and much needed encouragement.

I have a few questions if I may take a bit more of your time.

Does a gynecologist who specializes in urology have the ability and equiptment to do a cystoscopy and do a hydrodestion? There is one in my city.

The urologist was very nice that I visited, but did the one cystoscopy and gave me scripts for utica and macrobid in the event I feel worse. I still feel like I could call him back and see if he can do anything else? The current gyn gave me enablex and sent me on my way, but told me to call back if I have vaginal pain, which I still do with my area feeling as if it is swollen and feel as if there is a pulse down there. I did have laser surgery in 1985 for endometriosis and a laparoscopy a year later to cut adhesions.


Does the elimron truly make you lose your hair? What does the prelief actually do?

Last night I took a baclofen and some benadryl and went to bed feeling quite uncomfortable but only was about five times.

Thanks again for listening and all of your kind sharing. Kathy

[my3boysmcr]

Does a gynecologist who specializes in urology have the ability and equiptment to do a cystoscopy and do a hydrodestion? There is one in my city.


Does the elimron truly make you lose your hair? What does the prelief actually do?



I was diagnosed by a urogyn who performed the cystoscopy in office as well as the cysto/biopsy under general anesthesia. She also used the PST as a final diagnostic tool. I do not see her anymore as I did not like her method of treatment (DMSO instills) and her bedside manor left something to be desired. My current doctor is an OB/GYN and a pelvic pain specialist. He has said that I have recurrent bouts of blood in my urine, he wants me to go see my uro again (the one that did ESWL for a kisdney stone). He has me taking Elmiron (no hair loss for me), hydroxizine (atarax) and Lyrica. I also go to physical therapy to manage my pelvic floor dysfunction. All put together, they manage my symptoms and pain well. I have ibuprofen (600mg) and/or ultram (50mg) for pain as needed.

[Zygala87]

Prelief takes acid out of food and is not like tums etc that helps with the acid in our body that works to process food. I loss some hair at first due to Elmiron. I cut my hair short and because I always had it colored (Aurburn) I bought a wig and wore it until my hair grew out with out the color. Now it is many shades of gray and family & friends seems to like it. I stopped losing hair now and it feels great not to have it colored every three weeks. Of course I'm much older then you so it's OK with me. Frankly I would not trust a doctor that wouldn't talk with you about Elmiron and at least give that option to you. You don't seem to be getting much help. TY #3 can be a GOD-send when the pain is bad. I used it for a month and went off of it after that but still keep it around just in case. I also have Percocet but never use it. Just knowing it's there in case of extreme pain makes me feel better. I hope you can find a Doctor that understands IC better then the one you are using now. Hug, Ziggy