New to board.

[Rose1960]

Hi all,

I was just diagnosed in February of this year after suffering with IC for at least 20 years. After the birth of my son, I've been to so many uros, I have totally lost count. My biggest problem was during ovulation and then my latest uro had me on dilitations. I even remember when I was a teen waking up with this horrible pain around my bladder and didn't know what it was. I finally found a N.P. this past Feb. that asked me if the uros had done anything. Well, they did the dilitations, cathed me and sent me on my way, after telling me no bacteria, with some pyridium. They never did any further tests on me although I am R.N. and actually work with some of these doctors in the hospital. The last time, they really got aggressive and gave me Pyridium Plus. <sarcastically said> I had a test from my gyn after going to uros for 20 years and she finally diagnosed me. She said I was hard to diagnose because I had suffered for so many years that I had a high pain tolerance. The potassium that usually is painful I only rated a 1 or 2 on the pain scale. I had a hysterectomy with both ovaries removed and extensive adhesions and a transobturator transvaginal taping in May of this year. Things were going pretty good and I had never had any kind of treatment with the exception of a little distention with heparin in Feb. This past weekend, I gradually got worse after a visit to my family. I ate chocolate, homemade chili, homemade spaghetti (really tomatoey), and drank caffeine. I have never really noticed any problems, but I slowly but surely got so bad that I called teh N.P. on Thursday morning. WEnt in for urinalysis that revealed no bacteria, but I had already taken pyridium and I'm afraid the leftover orange color may have masked the test. I was given an Elmiron (my first) treatment and while I had the Elmiron w/xylocaine in, I was fine. When I voided the first time, I had pain after about 30 minutes. I could not believe that my bladder could hurt this bad. It was as if the Elmiron may have had a reverse effect on me. I was directed here by Hystersisters forum and am looking for some answers. I am so fatigued, my legs are killing me along with my back, pelvic floor area (although nothing there but bladder). I am even having pain that is running up my urethra on the sides and am worried about my TVT that was done in May of this year along with my hyst. I can not sleep enough and I'm usually an energetic person. I feel like I'm tired 30 minutes after I get up. When I take a nap, I'm usually okay for a little while but then I'm tired all over again. I called my general doc and told her I felt like I had a UTI and she gave me Cipro. Since taking it, I'm actually feeling a little better and have no had pyridium today. I know that I've read about flare-ups, but I pray I never have another one of these again. I'm on a Vivelle patch for my estrogen replacement and just recently started a Testosteron 1% cream once daily. I also take potassium supplements as needed, a blood pressure pill, and my asthma inhaler. I sleep with a heating pad almost nightly since my surgery because my legs are so restless.

My questions: Has IC caused fatigue for any of you that aren't medications that can sedate Has IC cause leg pain, almost cramps for any of you?

I realize this doesn't take the place of my doctor's diagnosis, but it's still nice to have others who can empathize with what I'm going through. As all of you are, this is totally affecting my life and I'm not for sure how much longer I'll be able to do floor nursing because it's so hard. Any advice, comments, or just support would help me. It's so frustrating to know that I've suffered from this for so many years and none of the other doctors even bothered to do a cystoscopy. When I had my hysterectomy, one was done, and pin point hemorrhages were noted all over the bladder which is consistent with IC. No wonder, I hurt so bad and I wasn't even hurting when they did the cysto. I can't imagine what my bladder must look like now.

Blessings, Rose

[dg2901]

HI Rose..

I see you made it over here from the HS site..:)
I'm hoping you find this board helpful!--I know I have.

'see' ya around..
diana

[kuntrygurl78]

Hi and welcome!

You comment about the leg pain...my mom has it. (shes 46 with fibromyalga). Her doc gave her something for restless leg syndrome..something you might look into. She said that the medicine for it has helped her.

Im sorry that you had to go thru what you did. Unfortunately, its repeated over and over again. I was one of the lucky ones and diagnosed with my first episode.:angel:

I hope that you find this site helpful!

[ICNDonna]

:welcome: to the IC Network.

Have you found the Patient Handbook? It's at http://www.ic-network.com/handbook and will help you learn about interstitial cystitis. The diet information is there and if you aren't already, I suggest you begin that today. Some find that single step helps more than anything else.

Some of us do have referred pain from our bladders to our lower backs and/or legs --- I get both when I'm flaring.

Are you taking oral Elmiron? It takes a long time to work (six months or more), but some report that they are almost symptom free on it. And there are many other treatment options. It may take a while to find which are most effective for you, but most of us do get there --- and most of us feel good most of the time.

Sending healing thoughts,
Donna

[irishnan3]

Welcome Rose 1960: I also was reffered here by HS. you will find this site extremely helpful and a wonderful place to vent. Believe me venting helps some days. You sound a lot like me. I to have had a Hysterectomy, oophrectomy (R) ovary only and many many problems with adhesions. Also dx'ed late with my IC. Have suffered most of my life with recurring UTI's and Bladded infections. It took almost a year before the drs. finally agreed it was IC. My tolerance for pain is very high. So my potassium test hurt but not any worse then a regular flare up day. I couldn't use Elmiron had reactions. I faithfully use the IC diet and after 6 months I really feel a difference. Except when my left ovary goes into action then I'll get a terrible flare-up at least once a month. I use prelief all the time, I don't know what I would do without it. You really need to get the diet going, it is rough at first, then it becomes habit and relief sets in. And that's so nice. It so weird how you will definatly know when there was something is a food that your not suppose to have. So when eating out reguardless of what non-IC'ers say take a perlief they just don't realize how sensitive we are. As far as your leg pain, it does sound like yu may have restless leg syndrom. I have a mile case, but my husband is really bad with it. The dr. put him on Requip. It worked wonderfully for him. He actually gets sleep now and says the pain has gone away completely in his legs. I can't use the Requip because of other meds. I take. But like I said it isn't that bad for me yet. So maybe you should ask your dr about it. Also I was told that surgery can bring on RLS. Good luck and God Bless:angel:

[Rose1960]

Thanks for all of your replies. I actually rarely drink anything with caffeine and so as far as diet goes, I guess I won't have that much to change. Chocolate will be my big thing as I totally love it, but not if it's going to cause me pain. Have any of you noticed that you can actually eat something one day and then a week later, it may give you problems.

For those of you who had reactions to Elmiron. Please tell me what they are. I feel like I am so swollen even into my urethra and even around the outside around my peri-area. I don't know if this could have resulted from the Elmiron or the betadine they used. Anyway, I know that I don't like this IC thing. My doctor says it can actually be debilitating.

Rose

[irishnan3]

Rose my reaction to Elmiron was Severe Migrain and swelling of the hand and feet..???Doc said it was rare. Go figure it would be me. So reaction do happen. Get checked if you feel like you are having a problem. Good Luck

[RAS6]

Hi Rose and welcome!
While I can't answer alot of your questions, I can tell you that I have noticed alot of leg and back pain along with pain in my abdomen (what started my symptoms) and in my vagina and urethra as well. When I described the pain in my back and legs and below my waist, my Doctor said I needed to start pelvic floor therapy. I haven't been in yet, just waiting for an appointment.
Also, I have been lucky to only experience one side effect from the Elmiron (I have been on it almost a month now) and that is the nausea caused by the capsuls. Ever since I started taking the powder out and mixing it with a glass of water I do not feel sick any more.
-Rachel