Ready to give up

[Kitty920]

Hi all,

I am fairly new to this wonderful site but have been reading member's stories for a long time. I thought I'd post my story in hopes that someone might have some advice or maybe offer some hope because I really am running low these days. I am 43 years old and have had on and off bladder discomfort for many years. Actually it is more urethral discomfort/pain (it feels like a raw and burning, throbbing sore in my urethra and the pain is at its worst when I am sitting.. I really do not have an issue with urgency or frequency. After I urinate my urethra hurts and then the discomfort decreases somewhat.

This past May this urethra pain returned and it has progressively become worst until presently. I have remained on the IC diet and have not cheated at all since May and have not seen any improvement whatsoever. Thankfully, I sleep through the night and when I get up in the morning my pain is minimal..it seems to increase as the day goes on and I have alot of discomfort sitting for any length of time. When I drive I sit on an ice pack and it sometimes helps, but lately it doesn't seem to help at all. I currently do not take any medication because my new urolgist wants me to try a long term low dose antibiotic to see if maybe I have a low grade cystitis. He said that after 6 weeks if I see no improvement he will do a cysto with hydro to begin the diagnoses process. I did see a urolgist years ago who suspected it was IC just based on my symptoms, but have not had any invasive tests to confirm it. I have done some research and am curious if maybe I have a prudental nerve entrapment (it really feels like a pinched nerve in my urethra) but I just don't know. I have never been able to see any cause and affect with a food causing a flare because the pain I have haa not fluctuated much outside of less discomfort in morning and more pain as the day progresses, and the more I sit the more it hurts.

My primary care doc prescribed amitryptiline for me back in May but after taking it for a couple of months and not seeing any improvement, he said to stop taking it. He then prescribed another antidepressant citalopram but that has not helped either and if my pain were to decrease somehow I would not be to take an antidepressant...so I continue to feel really down and alone. I do think that I have a high pain threshold overall, but I worry that if the pain gets any worst I don't think I could handle it. I am sorry to vent like this because everyone has difficulties, but I am so lonely in my pain and I would appreciate it if anyone has any ideas that might help to soothe this urethra that feels like it is on fire. Thanks for any ideas or thoughts...

Nancy

[Annie2]

Nancy, the symptoms you describe are a problem for many of us here. There can be many causes so you do have to keep pushing to find the solution that will bring relief for you. I'm sure others will have more suggestions, but two of my thoughts are pelvic floor dysfunction and perhaps a low estrogen level. Pelvic floor dysfunction can cause urethral symptoms and physical therapy (by a therapist experienced in treating PFD) has helped many. You could request a referral to a qualified physical therapist for evaluation for PFD to see if that might be a problem for you. The other thing that I thought of is a possibility of decreasing estrogen levels. You are still young, but estrogen levels can start falling in women in their 40s (I went into premature menopause at 35, so it can happen). Tests can be done to check your estrogen levels. The urethra is very estrogen sensitive and some of us who are past menopause (and even some who aren't there yet but are experiencing a decrease in estrogen) have found the use of estrogen cream like Estrace 2 or 3 times a week can help tremendously.

You say that ice used to help, but doesn't work as well now. Have you tried heat? Sometimes heat helps muscle spasms (which create a burning feeling) and helps those muscles to relax.

I'm sure others can come up with other suggestions. Hang in there and keep pushing for answers!

[Kitty920]

Hi Annie,

Just wanted to thank you for your advice..you were right about the heat. I filled a sock with rice and microwaved it and it was very soothing. Thanks! I also agree that hormone changes may be contributing to my misery; I have noticed with my recent cycle irregularities my symptoms have increased. I will talk to my gyn about hormone replacement creams..and I have it on my list to check on PFD too. My primary care doc has been sympathetic and is trying to be helpful..he says take it one day at a time and there is a light at the end of the tunnel...this has certainly been the longest and darkest tunnel imaginable. I do thank you for your helpful and thoughtful advice.

Nancy

[Linda May]

ic

Every icer is different after you have your cystro/hydro you and your uro can discuss the treatment options. Some respond well to dmso and others with rescue treatments. I found that the dmso works great for me and I have been in remmission for months. I hope and pray that you find your treatment plan soon. Do you feel a need to void alot? if so azo pills over the counter do help. Anyway, you have come to the right place for info and understanding, feel free to ask as many questions as needed.

[severtt]

Don't give up; there will be an answer

I was also so helpless, in terrible pain, and couldn't find a living, breathing, soul to help me. I had only my own resources; but I discovered that wasn't enough--a support network of family, friends, and God pulled me through. I had to find out what caused my symptoms. In was happenstance that I discovered what was in virtually all probability was causing my IC. I was suffering from severe iron deficiency and had two hospital stays involving blood transfusions of 4 units of blood each time. After each transfusion, within one week nearly all IC symptoms were gone. I had, prior to the 1st transfusion three years of terrible pain. The second transfusion was preceded by about a year & 1/2 of pain. I have a degree in accounting and other college degrees that required courses in statistics, and I could roughly figure out the chance of the transfusion having nothing to do with it, and it is definitely too low to be due solely to chance. The difference in me as long as I keep my iron levels up and produce my own blood in like night compared to day. To make an overly long story shorter, my body must have lacked the ability to repair or maintain the mucus lining in my bladder. I have about 15 years of acid reflux history. All that stomach acid may have contributed to damage in my bladder, I don't know. I hope that I will continue to do this well.
Only time will tell.
You will experiment, read, and finally come up with something that helps. It is a complex issue.
I will be praying for you