Not yet diagnosed and very frustrated

[ltlmiss]

Hello, I am not exactly for sure I have I.C., I am still waiting for my appointment with a urologist. I did find out though that I have a large fibroid and cervical polyps. I know that my symptoms can be caused from my fibroid, but, at the same time I don't get how I can have all the symtoms of I.C. I am constantly in pain, I always have urinary burning, urgency, frequency,(sometimes every 15 minutes all night and day long). My doctor is finally starting to take the right path, although he is a complete jerk. He told me if I had I.C. I would be peeing blood. Hmmm. He prescribed me lortab and told me he would never do it again. That was 4 months ago, I have had to go to the E.R. 6 times in the last few months to be only treated like a crackhead. I have been having the worst pain for a really long time with no relief. I did have my right ovary removed last November, I wonder if my bladder was damaged somehow although I have been dealing with this long before. I definetly do not want to have this condition, but, I am so sick of feeling this way with no sure answer. Something is wrong, I'm just not sure what. Any experiance with my symptoms will help. By the way, my doctor thinks it may be best for me to have a hysterectomy, I wonder if I should rule out I.C. first.

[ads]

If you live in Oklahoma City, you are in luck with IC docs. I cut and pasted the list from this website's list. You might want to seek a second opinion. OU is known for its IC research, so it would be my first choice.

I wish the best in finding a solution to your health situation. (In my humble opinion, your current doc needs to be fired once you find a replacement. Get a copy of your records and any tests you have done because it will come in handy if you go for a second opinion. Rmemeber, docs make money when they do surgery; the more they operate the more money they make, except for a few hospitals like Mayo Clinic. I also always go to the state's board and see the doctor has any bad marks on their license. You would be suprised to see what you find! )

Another idea is to look up the support group list from this website and call them. They will know the good docs and can give you the true picture.

Best wishes,
ads



http://www.ic-network.com/md/doctorlistings.html#OK

Oklahoma

OKLAHOMA CITY
Daniel J. Culkin, MD, Oklahoma University, Oklahoma City (405)271-6900
Interests: The University of OK has been a prior recipient of NIDDK/ICCTG/ICCRN grant funding for interstitial cystitis related clinical trials.

James F. Donovan Jr, MD, Oklahoma University, Oklahoma City (405)271-6900

Cheryl Sims, MD 15016 Admiral Drive, OKC, OK 73106 Phone: (405)722-4833

TULSA
John Forrest, MD, Urologic Specialists Of Oklahoma, Inc., Tulsa, Oklahoma, 74104-5433, 918-749-8765

[kadi]

Hi & welcome to ICN,
I'd definitely seek a second or third opinion, especially if your doctor is recommending surgery as drastic as a hysterectomy.

In the meantime, while you are waiting to get in to another doctor's office, you might try going on the IC diet. http://www.ic-network.com/handbook/diet.html
It is one of the most effective treatments for IC, costs nothing more than your regular groceries, & if it reduces your pain, will also provide information to your doctors.

If you decide to follow the diet, you might start by eating only foods in the "usually ok" column for a few weeks to see if your bladder calms down a bit. Remember that foods listed as "usually ok" may not be ok if they contain irritating components (citric acid, sorbic acid, metabisulfites, MSG, artificial colors, flavors). The diet may not eliminate all symptoms, but for most of us it is very helpful. For me, if I don't follow the diet, the medicines I use are not sufficient to overcome my symptoms . But with diet & medication, I feel pretty good most days.

For sure, remove the top IC trigger foods from your diet: sodas, coffee, tea, cranberry or other juices, tomato, citrus, multivitamins (including vitamin enriched cereals). Also, smoking & tobacco are bladder irritants.

I have IC, but have never had blood in my urine, so that's not an indicator as your doctor is saying.

Good luck! Let us know how things turn out, okay?
Wishing you better days soon,

[ICNDonna]

I think I would pursue a diagnosis before opting for a hysterectomy, which is a major surgery. It does sound like second opinion time.

...and....not everyone with IC has blood in their urine.

Donna

[KristiV]

I have never had blood in my urine and my uro says that I have IC. I am also from Oklahoma, but live in Tulsa. I go to one of the doctors from the list above in Tulsa and he is great. I would get a second opinion for sure!

[ltlmiss]

Thank you so much for the good info! The only thing that has actually worked for me is the diet. I realized that citrus fruits like mango and orange juice have caused me the most pain so I definetly have to avoid those. My family doctor is the one recommending the hysterectomy. I do have a bad history of 5 miscarriages, so I don't think that I will ever be able to have another baby. I have yet to see my Gyn, she is the doctor that did my last surgery and is a really great doctor. I trust that she will help me make the right descision. I have heard that the doctors at O.U. are very good in dealing with I.C. It has taken since April for my doctor to even send off the refferels so I can go to the specialists. I am really anxious for a solution to all my pain, I have been in the bed with a heating pad for what seems like forever! And on the pot. Ha! Ha!