It always feels like my bladder is swollen and the pain is unbearable.
It has gotten really bad in the past year but no Dr. will listen.
They just shrug it off or want me to take detrol or something.
It is not that, it is real, live pain.
I have looked it up and it seems to be a symptom of fibromyalgia.
I have had FM for years and was finally diagnosed with it after telling the symptoms I have had for so many years.
It has taken so many years of my life away from me that I could have done more things had a Dr. listened to me.
I have only taken pain pills a couple of times in my life, once when I had a baby and once when I had a partial hysterectomy and when I ask for something the Dr.s just say I am druggie out to get drugs.
If only they really knew me or would talk to my family and friends who know I hate to even take an aspirin, they would then know that when I want something for pain, I mean it, but in this town there are so many pill heads and I am an honest one who has to suffer because of them.
Anyway, I am venting off the subject LOL
Does anyone else with fibro suffer from this painful bladder thing and what do you do about it.
Last edited by janielou75; 01-15-2009 at 08:48 AM.
Hello! I understand your pain. What you could be experiencing is interstitial cystitis which is a common FMS ailment. Of all the symptoms I've endured with FMS, this one just about drove me crazy. Felt like I had a binder clip attached to my "hoo hoo" and the pain in my bladder was awful.
As much as you do not want to hear this, you should have a cystoscopy done in a Urologists office to confirm what this is or is not. Have you been to a urologist yet?
The five most common dietary triggers for painful attacks of IC are cranberry juice, coffee, carbonated beverages, tomatoes and tobacco. Vitamin C supplements can be a problem due to its acidic composition. Cranberry is useful if you have a bladder infection, but in IC, the acid composition will increase pain.
Partial relief can be attained by neutralizing urine acidity of drinking half a teaspoon of baking soda in a glass of water 3 times per day. A diet supplement known as Prelief - which is calcium glycerophosphate - can achieve the same ends as the baking soda.
If the diagnosis is "IC" there are different therapies the doctor can use that will offer some relief. Sometimes a bladder installation is used, which could contain a cocktail of different drugs. Elavil and other tricyclic antidepressents can help cut pain perception and might be useful. Antihistimines can also be useful, combined with other therapies, because they work on mast cells, which in IC release histamines and causes local pain and irritation. Ditropan or Levsin are useful to help bladder spasms.
Don't accept this lack of attention by the doctors you have seen. Persist, persist, persist. I was so angry after reading your post. I have been experienced so many medical diagnosis mishaps, but the one thing I did right was to keep going until I had my answer.
Thank you for your reply. That is the most helpful information I have recieved after all this time.
I did suspect IC and I will ask for the test to see if that is what it is even though I understand how painful it will be.
This is so bad I can't even bend over most of the time.
IC is the pitts! I had a long bout with it some years ago. Kirstee gave a wonderful response relevant to it all. Does a heating pad to your lower abdominal area or lower back help at all? The cystiscope (sp) test is a good recommendation so as to be sure what is going on up there. If I remember correctly, some docs will give you valium before the test. I know they did before proctoscope tests so I am wondering/hoping they do relevant to the cysto.? My heart goes out to anyone that suffers with IC. It IS very painful and seems to last forever. As for pain meds, are there any pain management clinics in your area? Hopefully, you can find one or a doc that will listen and treat your Fibro properly. Is is VERY painful a lot of the time and help is needed. I take extra strength over the counter tylenol at times....dosen't do much tho. Tylenol not good for liver either. I have hereditary liver disease so am not allowed to take many of the meds that could bring me pain relief...can't take sleeping pills, pain pills, nerve pills...it sucks. Blessings/hugs.
I had this last year. this is when my pain started to get bad. Well I was told I had a bladder infection. I had cramping and it hurt inside.. I had to put on this medication which interfered with my anxiety meds to I had to cut back. I didn't sleep for 2 weeks I was so frazzled.
BTW when you go to sleep do you wake up and have to pee so bad your stomach hurts? I have been like this the last few days. But I'm not drinking a ton of liquid.
Please don't just take bladder pain as a fibro thing..............I did and I ended up having bladder cancer. Always check to see if you have a bladder or kidney infection. I felt like I had cystitis, full bladder. If this continues tell your doctor you want to see a urologist. If your doctor doesn't respect your wishes, tell them my story. Bladder cancer is a type of cancer that re-occurs. I have to have my bladder scoped once a year now, but it was every three months for a few years. Anytime I have bladder complaints I am given an okay to see my urologist.
There's an over the counter bladder thing in the girlie section of a drug or grocery store, it helps with bladder spasms.
Also be careful of any fragrance in laundry products and bath goodies. Bleach is another thing to stay absolutely away from when laundering underpanties. Only wear undies with a cotton crotch sewn in. Cut out yeast making foods and sugar. Another thing which is common but not usually mentioned is that you can pass a bladder infection back and forth having sex. A lot of times the male doesn't get an infection or have symptoms, but if you're having infections a lot, tell your doctor. You both should take a antibiotic and not have sex until you've completed taking the antibiotic.
I drink cranberry juice or cranberry/pomagranet juice everyday. I used to get bladder and kidney infections all the time, but with drinking this forever, I can't remember the last time I had that full, bladder spasm feeling, it's been years.
As for the doctor that doesn't give out pain medication or if they don't in your community as a rule, go to another town. A decent doctor knows who comes in over and over for medication and so do pharmacies. To not even have your problems taken seriously makes me very angry. Next appointment take all your family, friends, etc..
OMG I went to the Dr. again about this last Thursday and all they did was give me another urine test which turned out fine.
The Dr. said they would schedule me a cat scan and call me Friday to tell me when.
No one ever called and in the meantime I am suffering so bad.
I called the Dr. while ago and they had forgotten about me since last week and all this time I am anxiously awaiting to have the test to see why I hurt so bad.
I have been trying to tell three different Drs over a year about this.
What if I have bladder cancer.
All the waiting could be very bad.
The nurse tried to lie and say it is just taking a long time to get the appointment so I called the hospital and he said they could take me right in and could have seen me last week and the test will take about 30 seconds.
I am pretty upset but maybe there is a reason I don't know.
This is a very small town and it doesn't take long to do anything here.
I need my insurance to let me change Drs.
Last edited by janielou75; 01-26-2009 at 08:32 AM.
Hi there. First thing, take a deep breath. Cystitis issues are much more common than bladder cancer.
Second thing, consider carefully the post regarding food & beverage triggers for cystitis.
Third, if you are close to menopause, hormones can impact this issue.
Fourth, you will likely get more info about your particular situation working with a urologist, that you will working with a GP.
I understand what you are going through. Suffered for years with frequency and burning, incl. nocturia -- up 6 - 11 times per night to pee. No help from 4 diff doctors. The meds I was given to try did not help to any significant degree.
In my case, a concerned nurse practitioner got to the bottom of my mixed-cause IC. Today I use an estrogen cream (vag), watch my diet, and take a supplement, CystoProtek, that helps build & maintain the bladder lining. I am doing better with the bladder than at any time in the past 20 yrs -- and I am 55!
So, take care. Many of these difficult problems can be chipped away at. While the big CA is always a scary prospect, and it's good to get it ruled out, in many cases there are lesser causes for major bladder grief.
I feel for you. I was diagnosed with Interstitial Cystitis about 1 month before Fibromyalgia. My Urologist told me from day 1 that he knew I had two bladder problems and probably three. First he diagnosed my cystitis. Now, I need another surgery to fix the other problems. Basically, my bladder has fallen. I had a hysterectomy at 27 and I also have three children. Both led to my bladder falling.
I had been seeing my family doctor for about a year before I received any real diagnosis. I too had many doctors tell my they couldn't find anything wrong. I was even sent to see someone four hours away. I was furious after that appointment! That doc told me I needed to get mental help. This was just two weeks after my family doc told me he knew I was not suffering from depression. I thank my family doctor for being so persistant. All though this doc so far away suggested seeing a Rheumatologist. So, not all was lost. now, my family doc is working with me to try to get me some form of temp partial disability with the state through the end of the year. Just until I get the right medications so I can work full time.
I live in South central PA. I recommend going to any doc that will listen. Hang in there! When I think back to my medical past, I started with symptoms at the age of 10! I am going on 39 now. Can you imagine, 29 years to find this common problem.
Hi all had to add my reply l too thought and did for the past few years feel like l had infections only a few times did the test come back positive for infection however after been diagnosed a few weeks ago with an infection it got worse through the night till l almost passed out with pain and l was kept in hospital for tests where it was found l had a cyst on my right ovary. The symptoms are almost the same but the pain from a cyst is unbearable. Please bear it in mind if you keep getting symptoms of infections