Newbie

[alwaysgreen]

I started having IC symptoms after menopause. Hot flashes had already stopped. Estrogen, progesterone & testosterone were extremely low. I also had extremely low thryoid hormones. I could barely walk any more. I would take 10 steps & would have to stop because of muscle spasms. I was going to the bathroom several times an hour & it continued during night. My husband picked up a womens medical book at the library. At the same time I had started taking benadryl for food allergy I couldn't figure out. My arms & back were itching around the clock. I noticed my bladder problems got a little better. I read on different things. One day as I opened the book it opened to IC. I had never heard of it & started reading. I had all the symptoms. Not having insurance I couldn't see a doctor. Later I started having itching & pain around vaginal area. I finally got insurance & started natural hormones. It reduced how often I was going. I live in small town in East Texas & never have gone to a uroglogist. I haven't mentioned the bladder problem to my doctor because I do not think I can stand the pain of having a vaginal exam. My husband has extremely low interest in sex & has ED, so sex hasn't been a problem. I read about oxalates recently & realized that when I eat certain things, it gets so bad. I am taking calcium citrate w/o vitamin D & magnesium a couple times a day & it helps. When I slip up & eat anything from moderate or high oxalates level, I am in pain & going to bathroom several times a hour. On my best days I go 19 times, & with 4 to 5 of these during night. I have small amounts of bladder leakage during day & am wearing poise liners & wonder sometimes it this is making it worse. At one time it was so painful to wipe after urinating. When I eat the foods with high oxalates it returns along with itching. I had my tubes tied when I was 20 since I had 4 children already. I had a hysterectomy when I was 26 with one ovary left. A cyst developed on it shortly after. I took Premarian off & on for a while due to vaginal dryness. I was 48 when very slight bladder leakage started. It's a little more now & get worse when I eat foods with oxalates. I forgot when I joined this site, but haven't posted till today. I have read many posts off & own. I plan to be more involved now. I never could tell the IC diet helped. I now know it was because of the foods with oxalates. Will add a signature later.

I wish everyone pain free days. I look forward to sharing information & stories.

[ICNDonna]

I encourage you to see a urologist. There are many treatments available if you do have IC --- it can also be important to rule out other possibilities.

Sending gentle hugs,
Donna

[Linda May]

I agree with Donna also stick with the IC diet till you know for sure I wish you the best.

[alwaysgreen]

My faith in doctors is not good. I prefer to go to someone who is recommended. I suffered with a low throid for 13 yrs or more & it wasn't diagnosed till I was almost in a coma. My doctor retired & I saw a new doctor who ran some tests. He said I was hyperthyroid because I had an extremely high TSH. Having gone to LVN school, I thought I remembered that high TSH meant low thyroid. Looked it up on line but couldn't remember or understand much of any thing I read, so I called & ask receptionist to ask nurse. They told me I was wrong. I decided to see another new doctor. I took the labs with me. He said he didn't know why I wasn't already in a coma & started me on thyroid meds for hypothyroidism. I have called nearby urologist to see if they have any IC patients, but they don't. The largest city would be Tyler, Tx. I have read many stories of how many doctores you usually see before they figure it out. I ordered urine test strips & tested my urine. Everything is normal. Nothing indicates infection.

[alwaysgreen]

Is there a member's list so I might find others nearby who have found a doctor?

Thank you so much!

[alwaysgreen]

I found something that said member's list is disabled. If anyone lives in or around Tyler, Tx & knows a doctor please let me know.

Thank you!

[Linda May]

My faith in doctors is not good. I prefer to go to someone who is recommended. I suffered with a low throid for 13 yrs or more & it wasn't diagnosed till I was almost in a coma. My doctor retired & I saw a new doctor who ran some tests. He said I was hyperthyroid because I had an extremely high TSH. Having gone to LVN school, I thought I remembered that high TSH meant low thyroid. Looked it up on line but couldn't remember or understand much of any thing I read, so I called & ask receptionist to ask nurse. They told me I was wrong. I decided to see another new doctor. I took the labs with me. He said he didn't know why I wasn't already in a coma & started me on thyroid meds for hypothyroidism. I have called nearby urologist to see if they have any IC patients, but they don't. The largest city would be Tyler, Tx. I have read many stories of how many doctores you usually see before they figure it out. I ordered urine test strips & tested my urine. Everything is normal. Nothing indicates infection.

I do not trust small town doctors at a all!
I went to a small town doc when I first moved here twenty years ago.
I have high blood pressure and was put on medication, my blood pressure got extremely high and the doctor did nothing.
I went to another doctor in the city he reccomended to go in the hospital for tests.
I had three anurysm on my left artery to my kidney, they were on the verge of bursting.
the doctors had to do emergency surgery that day, it saved my life I would have been dead if I did not go to second doctor.
I have a thirteen inch scar that goe's from right under my breast down to my private. they had to really lay me open I was in ICU connected to so much so many wires and tubes it was unreal. I thought I had died I couldnt believe how painful it was. My blood pressure is fine now thanks to that second doctor. But you know as many surgerys I have had when my IC was in full flare last year and the URO did not give me pain meds IC was by far the worst pain I have ever felt in my 55 years. I pray that I never ever get that bad again it was three months of torture, and yes my first URO small town doctor.

[alwaysgreen]

Linda,

That is so terrible, what you had to go through. I am so glad you got to a doctor who knew what to do. I'm so glad you're still here! Maybe somebody from around Tyler, TX will find this post & point me in the direction of the right doctor. Now days they think you are depressed when they don't have an answer. All the doctor's offices around here have signs posted that they don't treat pain or nerve conditions. Thank God I learned about oxalates & this has helped with the pain alot. Oh & those frozen peas (ice packs) are a life saver. Benadryl helped but caused problems with my restless leg syndrome. I still take it sometimes, then I put on icy hot (legs) & try to get a little sleep. I do pray about it too.

Thanks

[ICNDonna]

If you scroll to the top of this page and click on Professionals you will find a list of physicians who have been recommended by other IC patients. There may be someone in your area.

Donna

[alwaysgreen]

Thank you Donna!

Donna, I just found the list. Thanks for the directions. I have sent a few messages to members I found when searching Tyler. I hope that is ok?

Thanks!

[Linda May]

I do not trust small town doctors at a all!
I went to a small town doc when I first moved here twenty years ago.
I have high blood pressure and was put on medication, my blood pressure got extremely high and the doctor did nothing.
I went to another doctor in the city he reccomended to go in the hospital for tests.
I had three anurysm on my left artery to my kidney, they were on the verge of bursting.
the doctors had to do emergency surgery that day, it saved my life I would have been dead if I did not go to second doctor.
I have a thirteen inch scar that goe's from right under my breast down to my private. they had to really lay me open I was in ICU connected to so much so many wires and tubes it was unreal. I thought I had died I couldnt believe how painful it was. My blood pressure is fine now thanks to that second doctor. But you know as many surgerys I have had when my IC was in full flare last year and the URO did not give me pain meds IC was by far the worst pain I have ever felt in my 55 years. I pray that I never ever get that bad again it was three months of torture, and yes my first URO small town doctor.

My sister has restless leg also she has tried all kinds of meds but nothing works for her. She just lives with the pain, my heart goe's out to her.
I am starting my 6 weekly instils again because I have been in a mild flare for two months.
I hope they still work for me, if not my uro will try rescue treatments on me.
What is your uro doing for you?

[Linda May]

Linda,

That is so terrible, what you had to go through. I am so glad you got to a doctor who knew what to do. I'm so glad you're still here! Maybe somebody from around Tyler, TX will find this post & point me in the direction of the right doctor. Now days they think you are depressed when they don't have an answer. All the doctor's offices around here have signs posted that they don't treat pain or nerve conditions. Thank God I learned about oxalates & this has helped with the pain alot. Oh & those frozen peas (ice packs) are a life saver. Benadryl helped but caused problems with my restless leg syndrome. I still take it sometimes, then I put on icy hot (legs) & try to get a little sleep. I do pray about it too.

Thanks

my sister has restless leg syndrome