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Gisèle
09-07-2007, 11:45 AM
Hello everyone!
I can't believe I found this site with others who are like me.
Well, I would love to share this story with you(since you are the only ones who would really understand), and would love some advice.
I am going to start from the very beginning, so please bear with me.
About five years ago, I had symptoms of a UTI, all the symptoms, I also had an AWFUL pain in my lower back and abdomen. This was like screaming pain. I went to countless doctors, about 6 emergency rooms, and two specialty hosptials in Chicago, none of which could find anything or give me a diagnosis for this awful pain. The only thing that showed up was an abnormal urinalysis(nitrites and red blood cells.) I went from antibiotic to antibiotic and nothing helped. I then went to a urologist, who is my current one, and he was the only understanding doctor throughout this whole ordeal. I was getting better when I first saw him, and although he said he wanted to do a cysto, he said since I am getting better what's the point. He was the only doctor to recommend this, and pretty much the only doctor who didn't say "it's all in your mind" and to not refer me to a psychologist. My mother at one urologist mentioned if I could have IC, and he said no, there are no juvenile cases of it(I was under 18 at the time.) So, I gradually got better on my own.
Fast forward to today. About a month ago, I began to have UTI symptoms, the burning, frequency, etc. I figured it's nothing to think about, so I ignored it. About two weeks ago, along with the UTI symptoms, I began to have these AWFUL pains in my back by my kidneys. This went on for about two days until the pain seemed to move down to my lower back and abdomen. I have had mild diahhera on and off, and loss of appetite, and constant nausea. The only way I would describe this pain is bad menstrual cramps(not near that time of the month.) I went to my family doctor, and she did a blood test, which came back normal. She also did a urinalysis which came back normal(pretty much water coming out of me), but told me to come in with a sample in the morning. This sample showed nitrites, WBCs, gluclose, and protein, so she sent it off for a culture, which came back normal. I got a CT scan, which showed slight bladder wall thickening, and possible cystitis. There were no kidney/bladder stones, no kidney infection, just that. So, my family doctor told me to go to my urologist(the same one who I had last time.) But, of course, this family doctor mentioned it could be "all in my mind." So at my urologist, I told him my story, and he looked at the lab results, and concluded to swith my antibiotic(from Macrobid to Levaquin, and from Pyridium to Urelle.) He said he also wants to do a cysto next week, but if this antibiotic works, then we will do it at a later date(it's not working.) So, here I am with this pain(Vicodin doesn't even really get rid of it), and awaiting a cysto for next week. My mom's friend has the exact same symptoms as me, and she has IC, so I did some research on it, and found it a possibility. I found this site, and was amazed at the information I discovered. So, does this sound like IC, is it anything similar to what you experienced? Please don't tell me it's all in my mind, I know it's not. Thank you so much for reading!
Also, could you tell me what I am in for with this cysto(I am opting for general anesthia.)

Claredale
09-07-2007, 12:02 PM
Sounds like the symptoms to me. I hope you don't have it, all of us do!

Definitely have the cysto done with anesthesia. You will definitely learn that we are all different when it comes to meds, treatments, levels of IC, etc. You will get alot of info on this site. My best advice and it has come in handy so many times is to keep a journal every day if possible of how your day went, your pain level, urg/freq, if you ate anything different than normal, what meds seem to be working and what ones aren't, state of mind (definitely helped me) and something that you did that day so that when you are having bad days, you can go back and remember that there are good days as well! When I go to the doctor, I take him an abbreviated version, just so I can tell him what is going on.

Good luck to you! Tracey

Gisèle
09-07-2007, 12:09 PM
Sounds like the symptoms to me. I hope you don't have it, all of us do!

Definitely have the cysto done with anesthesia. You will definitely learn that we are all different when it comes to meds, treatments, levels of IC, etc. You will get alot of info on this site. My best advice and it has come in handy so many times is to keep a journal every day if possible of how your day went, your pain level, urg/freq, if you ate anything different than normal, what meds seem to be working and what ones aren't, state of mind (definitely helped me) and something that you did that day so that when you are having bad days, you can go back and remember that there are good days as well! When I go to the doctor, I take him an abbreviated version, just so I can tell him what is going on.

Good luck to you! Tracey
Thank you, Tracey! The reassurance that I might have it helps, because at least they will find something wrong and not give my the runaround like usual. Thanks for the tip about the journal, too, that's a great idea!

missychan
09-07-2007, 12:23 PM
Welcome! And whatever it is they find, YOU ARE NOT CRAZY! Now that we have that outta the way... LOL!

You sound alot like me and my situation: frequent UTI's that weren't really uti's. Normal results- doc said it was all in my head. I got online, found out about IC, and when I talked to my doc, he agreed "maybe"...

My pain was the same as yours, same areas... I found a uro who did the urodynamics and in-office cysto, and he diagnosed IC. Then told me it was a horrible, painful disease, and sent me on my way. No meds, nothing.

Fast forward to uro #2- did the hydro/cysto under general anesthesia and agreed that I had a "Moderate" case of IC, it was a horrible painful disease, and sent me on my way with Urelle.

Uro #3- another hydro/cysto under general... "Moderate to Severe IC", and FINALLY some treatment. Immediately put me on Elmiron, with 6 week runs of DMSO instills. No pain meds, but did do various antidepressents. Thank GOD my GP was giving pain meds. Not strong enough, and barely enough to last 1/2 a month, but better than nothing.

Now- two years into the current Uro, I'm at wits end again. The DMSO seems to be making things worse, Elmiron makes me sick, and the doc isn't willing to try anything else. She offers TONS of alternatives, but for some reason with me is stuck on Elmiron and DMSO. She will give 80 Percocet 10's for the month which help- as long as I'm doing the DMSO and Elmiron.

When I asked about whether the DMSO was over 30% she had no idea. When I gave her the info on Elmiron only working for about 13% of patients, she had never heard that... and she's one of the top uro's here for IC.

So- I'm again at a brick wall, symptoms getting worse, and neither doc will prescribe pain meds since I won't do the DMSO and Elmiron... guess it's time to find yet another uro. (I AM willing to continue the instills, just not straight DMSO, as it's making things worse!) I am also open to any and all suggestions from her, not just looking for pain meds, but when the DMSO and Elmiron aren't working, it's time to try something new!

So- it's not all in your head, it's all in your bladder, and don't you stop until you get a doc that will listen to you. Whether or not it's IC, it sounds as if it's something, and you deserve to be heard.

Good Luck!

Missy

sweetness7104
09-07-2007, 12:27 PM
Hi there! I think you should DEFINITELY have the cysto done with anesthesia. I had my first cysto and hydrodistention with anesthesia, and my second one without. It's very painful, and you will have a lot of pain when you urinate after the cysto when you wake up, so just be prepared for that. I think all of your symptoms sound like IC. I was listed as a possible diagnosis of IC over a year ago at the age of 23, but it took until a couple months ago for a definitive diagnosis because I was so young.

After the cysto, if you have any other questions about treatments or medications, let me know. I can let you know about the regimen I'm currently working with, and what I'm getting ready to try.

Best of luck! I will keep my fingers crossed for you that it's not IC, but if it is there is a wonderful support network on this forum.

Jessica

Gisèle
09-07-2007, 12:31 PM
Missy, thank you soo much for sharing this information and your story with me. It helps me so much, you have no idea!
I have a question: when they do this cysto, what do they see with a patient who has IC? What does the bladder look like?
Also, I have read mixed reviews on Elmiron, but I have also read that it is the main treatment. What negative effects has it had?
Thanks again so much!

sandramac
09-07-2007, 02:47 PM
:welcome: A plain Cysto you do not need to be asleep for , A hydro with cysto you will need to be asleep for. I hope you find some answers soon, Please speak to your doctor about all your fear's about all procedures before they are done. Also have you gone into the Ic handbook ? To look into the IC diet as well ?
sending Hugs Sandra :cat: :cat: :cat:

Gisèle
09-07-2007, 03:02 PM
Thank you so much sweetness7104 and sandramac!!
All of this information is helping a lot.
I have looked in the IC handbook and the IC diet last night(I found this site last night and browsed around for about two hours), and it has so much good, helpful information!

Agape
09-08-2007, 06:44 AM
It breaks my heart to hear of women as young as you having this condition. You will be in my prayers, as I know how much harder it is for the young women to take care of a family, a young husband or boyfriend, work and still enjoy life while you're young. Fortunately I am over 40, family grown, but still trying to work and enjoy life. It isn't easy.

hdb1982
09-08-2007, 07:45 AM
I had a cysto/urodynamics done without anesthia for a diagnosis. I was not bad for me. A tad bit uncomfortable. The worse things was after b/c they put lidocane on the urethra and when it starts to wear off it made me feel I had to pee but I didn't. It didn't hurt me to pee it just felt tingly. Good luck

Babs RN
09-08-2007, 08:13 AM
Gisesle-
I have been where you are and have run the gamut of diagnostic test and procedures. I have had urodynamics done 3 times, 6 cystos with hydros under general anesthesia(I would recommend anesthesia with the hydrodistention), in office cystos--as well as a variety of treatment plans that have worked with varying success. I currently see a pain management specialist as well as my primary doc and will be seeing a urogynecologist. I can say that these boards have been great for me through all of this and that if there is anything I can suggest it is that you find a medical team you are comfortable with to the end. You need to be able to trust and work with them to have the best possible outcome. I have had some docs that leave something to be desired throughout my IC journey or some I just don't jive with. I have had the greatest luck when I feel like I am a contributing member of MY team and not following orders if that makes sense. Hang in there and come back here whenever you need to, to ask questions to vent, whatever! Oh yeah and that over 40 thing that they throw at you as a reason to not diagnose the IC kills me--alot of us on here are in our 20's and 30's. I was diagnosed when I was 33(almost 4 years ago)but had trouble and symptoms long before.

Hugs,
Barb:welcome:

karenapp
09-08-2007, 01:39 PM
Gisele, definitely have the general anesthesia for the cysto. I just had my first one a couple of weeks ago and it really wasn't bad at all. I was back at work the next day. They did do the hydrodistension as well while I was out.
I've just started on the Elmiron myself, so far it makes me a bit nauseous when i take it since you have to do so on an empty stomach but no other effects so far.

Agape
09-09-2007, 06:43 AM
The Elmiron made me nauseous at first too and I was told to open the capsules and empty the powder in water and drink it that way. After a couple of days it didn't seem to bother me at all and now I just swallow them. I have to take two in the morning and two in the evening.

Gisèle
09-09-2007, 05:07 PM
Thank you so so much, Agape, hdb1982, Babs RN, and karenapp!! All of this information helps so much, I really appreciate it! Thank you.