Bladder issues IC???

[irish]

I seem to be on a slow path down hill the last couple of years. I have developed bladder pain, urgency, etc the past month. Saw urologist 1 week ago before going to my sons house for 5 days plus having my IVIG. The pain has been pretty significant and thankfully isn't really bad all the time. I take one AZO oil every so often to take the edge off so that I don't feel so uneasy. I will be having a cystoscopy next week and a couple of other tests. I think that he is thinking Interstitial cystitis.

My urologist also treated my hubby for a couple of years before he passed away. This is another really great doc that I am so fortunate to have. He said something to me that really helped me in my ongoing task of grieving the loss of hubby. He knew us well and our battles with health issues. He said "you folks really had a flogging, a real flogging." I told him that was an interesting choice of words. He said that he used the word on purpose because we had been through so much with illness/death and over so many years. He said that you were both sick for so long that all you remember are the bad times because the good years were so long ago that you can't remember them. For those of you struggling with grief issues-----this really does say it all. It almost takes a picture to help remember the good years.

Anyway, I will call immunologist and see what he has to say about the bladder issues plus inform him of all the pain in back, hips and wherever it chooses to go. Hard walking a lot of the time. But, I can still manage to get to Walmart now and again. Oh, by the way, I am having incontinence big time so that really makes me cut down on fluids in order to go any place.

And we are thankful for the good times and just keep plugging along. Right!!!! Take care all. I will let you know about the interstitial cystitis as this may be autoimmune also. Irish

[Carolina]

Dearest Irish,

It IS always something, and then it's something else.

IC joined my 'family of Immune Disorders' about 10 years ago.

I take D-Mannose daily and the accompanying UTIs have stopped, which is a relief.

I also take Gabapentin for nerve pain, and it seems to have calmed my bladder pain and the urgency, as well.

I think that reduced urge and some 'bladder retention' are side effects of Gabapentin, and they are welcome for me.

I just make sure to completely empty my bladder each time.  I also have some neuropathy associated with my bladder so it's all pretty complicated.

But the D-Mannose has stopped the UTIs, which produced pain beyond belief, both at the time of the UTI and as a rebound after the antibiotic. 

Keep us posted on your 'new adventure'.

Hugs,  Elaine

[susanep]

Irish I am so sorry to hear of your latest issue to deal with. I am right there with you. I keep a kidney infection or whatever it is with pain, urgency, and incontinence. I need to have those more specific extras at some point. I have tried the d-mannose , but it doesn't help me. I also take Gabapentin everyday for fibromyalgia, but it doesn't help my bladder in any way. I guess my body is just stubborn. I am having to wear pads now, because I will have bladder spasms and have to run to the bathroom when one starts.

I hope you find out what's going on and get the help you need.

Hugs,
susanep

[araminta]

I'm so sorry you're having to deal with this, I hope things get better soon.   It's good that you have a consultant you trust, that's worth a lot.

Your advice and help have made a big difference to me, I very much appreciate all your thoughtful and knowledgeable posts.   It's so generous of you to spend time posting replies here when you have some quite difficult issues yourself.

[irish]

I have not had infection with my pain, etc. I had two urines that were negative. This happens a lot with trigonitis(which I had a lot in my younger years) and from what I have read the negative urines can also accompany the interstitial cystitis.

Time will tell. Sitting around is making me fat though and I will be glad to get rid of some of the back and hip pain. I may end up changing my IVIG product as I just feel like things are not as good as they have been. It is always up and down for me but lately there isn't much time between all the health events. A retrieval once in a while is good to have. Irish

[irish]

Well, finally had the cysto and the inside of my bladder doesn't look very good as it is all enflamed with hemorrhagic areas all over. Thankfully, he did not see any sign of cancer. My bladder and urethra are very sore and bladder spasms don't help. Also, the incontinence continues and more or less controls by trips anywhere. Thank goodness for all the new products one can buy to "pad up" for a trip. Who woulda thot.

I did some research on the interstitial cystitis or as he called it "inflammatory cystitis". He put me n a very conservative treatment of antihistamines daily and estrogen cream to increase the tone of my bladder tissues. In other words, being an old lady doesn't help any. Men can also develop this condition but I would guess they aren't treated with estrogen cream.

The other thing of interest is that causes for this condition contain autoimmune disease.....can you believe it??? Immune suppressants are listed as one treatment so I will call my immunologist office tomorrow and talk with the nurse. My immunologist has been talking about putting me back on Cellcept again as I said I would give it another try. I am so full of inflammation all over my body lately. It isn't terrible, but it is bad enough to cause some misery and affect my quality of life.

If anyone has some experience with this it would be great to hear your treatments and how things would worked for you. This is a long term off and on issue I am guessing. Thanks all. Irish

[jazzlover]

Very sorry to hear this! IC ended my teaching career 25 yrs ago. I have found great help with twice daily D-Mannose.

Be sure to look at the dietary plans for IC patients. It really helps.

My IC also flares up when my MCAS is flared. Taking cromolyn sodium has helped immensely with that. I was having "new" IC symptoms last year and once I got on cromolyn, it got a whole lot better.

Hope you find the key for your case.

[irish]

Just a note....I have had Xyzal 5 mgm once a day for 4 days and my bladder is some better and the aching in my back sacroiliac/lumbar spine is much better. I do't know if the back is just improved from the antihistamine or if the bladder is better making the back feel better.

I do know that I have been dealing with the back pain for about 1 1/2 years off and on and it has really curtailed sitting, standing and walking at time. So, maybe antihistamines might help some of our inflammatory type pain in joints. Irish

[Nomad]

Consider d mannose (capsules from health food store) and googling, then following the ic diet. Avoid coffee; if you are going to drink even a little, take Prelief before. I have found a Med called Baclofen somewhat helpful (combined with DMannose).

[irish]

I am doing much better on the antihistamine for some reason. I can't take muscle relaxants because of my Myasthenia gravis. I will talk with my immunologist when I go for my next IVIG. I would bet this is autoimmune cause I have felt like I have had a low grade fever on occasion. I know I had a 99 one morning at the doctor so that is a fever for me. The pain really gets to a person I will say. I am like exhausted and I think a lot of the fatigue is from the loss of sleep from the pain, incontinence and very frequent voiding. Thanks for the input. Irish

[irish]

Well, I just got on my portal and read the remarks my urologist made following my cysto and urodynamics.  He called it inflammatory cystitis and stated on his notes that he does't think it is interstitial cystitis. He thinks it is an autoimmune issue and thinks it will be hard to treat. I am still having pain but thankfully not as much as previously. I sort of go up and down with the pain which is very much what autoimmune issues do.

I have made a list of wall my health issues this year and will see immunologist on Thursday , I hope. I get my infusion and he often makes a quick stop to chat with people. I have to admit that this is a really crappy thing. Have to wear a "diaper" all the time and am very thankful for the good ones they make these days. It keeps me at home most of the time. I feel feverish off and on but haven't caught a fever on thermometer yet. Also have had some sores in my mouth that were no painful. Fouond them by accident.

Interestingly enough I have found a couple of places that mention Lupus and bladder so time will tell. I am anxious to get put on some kind of treatment cause I am miserable. Let you know the outcome. Thanks. Irish

[jazzlover]

Try D-Mannose .. keeps the pain away and keeps infections away.

[quietdynamics]

Irish, I am sorry you have another burden placed upon you. What happened to 'golden years"?
And you and your family plan for a physical transition for you later this year. That will hopefully be a true relief.

Diaper: when I had fecal incontinence someone suggested wearing a diaper.. like I was really going to leave the home not knowing when THAT was going to hit? Fortunately it has been managed and for whatever reason, since being on Methotrexate has not happened again. But, going to Dr. appts with that concern was an real issue plus a change of clothes.

So I am truly hoping that your transition goes as smoothly as possibly and leaves you with less stress as you look from your porch..

[janny]

I am so, so sorry for all you've been through! I always tell people I think I've had so many health issues so God would teach me to be more compassionate towards others with problems. And it worked! It sounds like you don't have IC then? I did get diagnosed with it about 5 years before the Sjogren's symptoms began. I went to urologist after urologist, had every test done, tried a bunch of different meds--even Flomax (which is made for men's prostate issues)--the doc said "we'll just give it a try" lol! Well, finally, I was sent to a physical therapist who specialized in pelvic pain and bladder issues. She had me doing biofeedback with an ultrasound device inside my privates. She told me I was clenching my muscles all the time in there as I had (like you) been through a lot of stress and the muscles were pressing on my nerves, causing my bladder issues and pain. She had me order a glass dilator (sorry to be sort of graphic) and taught me to press on the muscles inside with it and I could feel them release. It was the oddest thing. I had to do this every night for a good two years and soak in the tub and relax all my pelvic muscles. Well, I still get the occasional flare-up, but for the most part, this really helped. I am just telling you this as it may be something you or others want to think about when having bladder pain or issues. I was diagnosed with IC, but it turned out to be a pelvic muscle disorder. Pelvic physical therapists are also trained to help women with incontinence. You may want to ask your doctor about this. Anyway, just my two cents...I do feel for you. I remember the pain was so bad it felt like gasoline was inside my bladder and I used to think I couldn't go on.I just thought maybe all your stress had something to do with the bladder issues.

[irish]

Doctors said this is not stress. Both urologist and immunologist say it is autoimmune. Urologist doesn't think it is IC either though symptoms are similar. I just had my IVIG infusion on Thursday and the pain is less as is the incontinence. My immunologist is going though all my medical records---probably from the last 2 years---cause I have had so many things going on.

Interestingly the bladder can be involved in lupus so that is something I will question. And yes, the pain is absolutely terrible when it is bad. Unexplainable unless a person has experienced it. I have a car with bags of pads and diapers and extra clothes. It is what it is and just have to live with it while things are investigated. Keeps me" home and out of the bars" as the saying goes.

I had thought I might be able to have a few fun times when I retired but so far not much exciting has happened. Probably good cause I would not know how to act. lol