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Corrie
Board Addict
Reged: 07/16/02
Posts: 362
Loc: Southeast US
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I've just been diagnosed with this supposed, auto-immune disease. It effects the bladder/urethra and intense pelvic pain is one of the symptoms.
I had my urethra stretched when I was 13 due to recurrent bladder infections, and was also in the ER 3 times 10 years ago with severe bladder infections (bleeding). I've been using OP's for herniated disks, but the pelvic pain I've been experiencing lately is worse than that of my back. I really feel like I have too many complaints, and so I've resisted going to the Urologist for this condition because 1) our insurance majorly SUCKS and we can't afford the deductable 2) I believe my family already thinks I have too many physical problems and that I'm a constant source of complaints.
I couldn't stand the urgency, pelvic pain, burning, etc. anymore and finally decided to see my OB/GYN, the only doctor I truly trust and he was able to diagnose this. It's a chronic disease, and Elmiron is one drug used to treat this disorder, but relief won't be found until 2-4 months which is unacceptable. I already take up to 5-6 Lortab's daily (I know I'm going over my 4 per day limit, but the added pain is a contributing factor) and use Ultram and Buprenorphine (which I'm finding is not so great of a painkiller, but a good drug to use if you want to quit taking hydro) on the days I don't use hydro.
I'm not sure how to go about finding an approach to treat this condition. I've already been searching on Google, and there are a few Interstitial Cystitis organizations which I may contact, as my doctor didn't have much in the way to offer in regard to information. There are therapies such as Bladder Distention and Bladder Instillation and surgery as a last resort, and they now are wanting to do a bladder biopsy to rule out anything more serious.
I do feel very thankful at this point that I at least have Ultram for the pain (which I'm now taking until my refill of Lortab's arrive on Monday from Woody's), and have a doctor's appt. next week, but I wanted to see if anyone has any information on Interstitial Cystitis (personal or otherwise). I've had problems off and on like I said since I was 13, but my main concern for the past several years has been my herniated disks, now this comes along and the pain seems to be too much. I hate this because standing for any length of time is incredibly uncomfortable, and this limits me in what I can do in regard to making dinner, cleaning, etc. It seems as if no one really quite understands. I've tried to do the right things like work out regularly, not drink alcohol or smoke and eat healthy and drink LOTS of water (no soda), but don't know if there is a particular diet I should follow that could be of any help in the meantime.
Any help would be much appreciated if you know anything about this condition. Thanks.
Corrie
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LumbarSpasm
Silent Chaos
Reged: 05/07/02
Posts: 1538
Loc: USA
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Corrie, I am sorry to read about your diagnosis. My best advice (which you didn't ask for), is to find a specialist.
If your doc can't offer you much info on this, he/she may be able to suggest a reputable specialist who can help you through the pain until the medication works and one who will understand and be able to explain the disease in a comprehensive manner.
My dad's urologist is quick to help him with kidney stone attacks...assisting him with pain control as he tries to pass them at home. He is very compassionate, whereas dad's PCP wants nothing to do with it.
I hope you find relief soon. Ruling out cancer may seem expensive, but it may save your life.
Good Luck!
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LumbarSpasm
Or just a pain in the butt?!
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myrrine
Member
Reged: 08/10/03
Posts: 163
Loc: Western PA
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Hi,
I just went to a urologist because I have had chronic pelvic paion which seemed to match the symptoms of IC. So far my urologist has put me on two medications Flomax, and Detrol LA to help with the symptoms. I'm supoosed to try those for two weeks, then we'll do a bladder distention if they don't help much much. In fact, that is the one way to truly diagnose this condition. Diet really does play a factor,based on the literature my doc gave me. The not smoking thing is really important. But if I were you I would double check and go through with a proper diagnosis to make sure nothing more serious is going on. Often people with IC don't have bladder infections the way you do, the cause for the condition is unknown in most cases. Also, doubke chekc about Endmetriosis, I have that as well, and the symptoms of pain are extemely similar. Please go to your urologist. A gyno is great, but they really shouldn't be the ones to diagnose you with such a chronic condition. Like I said my urologist hasn't put the diagnosis on my me yet because he hasn't done the proper tests yet. IC is one of those conditions you diagnose a patient with after everything else has been eliminated. And with you recurrent bladder infections and level of bleeding I would definently do the bladder biopsy to be on the safe side. BTW were you diagnosed with a bladder infection recently? I hope I helped you, and I can totally relate to what is going to you. Read my introduction in the Meetinng Place for a more specific breakdown of my wonderful ailments. And if you tell me anything about the symptoms of a herniated disk, and what tests they use that would be great !!! PM me if you have any questions 
PS the literature my doc gave me on IC was downloaded from:
www.niddk.nih.gov/health/pubs/cystitis/cystitis.htm
(I hope I copied it right, it was a little cut of at the bottom of the page)
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They say "time marches on," I just never got used to the beat...
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zorg
Veteran
Reged: 04/29/02
Posts: 559
Loc: Midwest
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Corrie,
You aren't alone. I'm a male IC patient. Had my cysto/hydro in August of 2001, and I know EXACTLY what you're going through.
Please PM me and I can give you quite a bit of information about where to go for support and assistance!!
There is a LOT of ground being broken in research, and I feel there may be a solid workaround or cure within 3 years.
I STRONGLY disagree, as do many others, that the disease is autoimmune. I believe it's all a manifestation of Pelvic Floor Dysfunction, and am doing as much research as I can to further my hypothesis.
Please PM me and I'll help you out!
A couple sites for you for right now:
http://www.ic-network.com (check out the message boards)
http://www.ichelp.com (the original and IMO best organization to contact for help or ideas)
Hopefully talk to you soon..... You're NOT alone....
J
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Corrie
Board Addict
Reged: 07/16/02
Posts: 362
Loc: Southeast US
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Thanks so much LB, myrrine and Sonick for your suggestions/feedback and website info. I've made an appt. with a Urologist this week so they can conclusively tell me what's going on. I need to have the gamut of tests run, and along with that comes trying to find childcare, etc. And about being diagnosed recently with a bladder infection, I was diagnosed just 30 days ago with a serious bladder infection. I have had problems with these types of infections for a long time, though, and the operation to stretch my urethra (when I was a kid) seemed to help a lot in re: to clearing them up.
I'll do as much research in the meantime before I go so I can be armed with information on IC. I think I need a second opinion in re: to my diagnosis as well just to ensure that this is really what I have, and like you've said, the opinion of a specialist.
Thanks again for the replies.
Corrie
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