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Old 12-19-2009, 01:51 PM   #1
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Bladder and/or pelvic pain with Fibro? Anyone?

I'm hopeing someone can relate to this or know what i'm talking about. I've had Fibro for about 7 years now and over time it seems like it's gotten worse. It's like the pain is in more areas and more often. kwim?
my latest thing is Pain in my bladder area. It hurts soo bad! It's on the right side and Way down low like right at the pubic bone. I don't know if it's so much Fibro or bladder cysts? I'm going to make an appt with my Dr. I need to get a new reumo Dr since mine moved to Arizona
Does anyone have anything like this too? I've read that pelvic and bladder pains go along with Fibro. Seems like just about everything does lol

 
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Old 12-19-2009, 11:07 PM   #2
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Good you are making appt. with your doc.
We really should not ignore any continued pain, what you are describing could be a number of issues. Some type of infection, cysts or muscle spasms to name a few. You may even need to see a gynecologist if needed.
Best to always get your test result copies of any urine, blood tests or any tests that are ordrerd, they are yours.

Since you are in search for a new Rheumatologist your doc you see soon may be able to refer a good Rheumy to you. Hope you find one you are comfortable with. Keep in mind you can always find another if one doesn't seem right for you. We do have choices to whom will treat us.

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Old 12-20-2009, 02:01 PM   #3
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

hey Sahm, YES! i dont have to much trouble with bladder pain, tho from the kidneys i do pass blood and protein and stones thru there. But the pain that i do have always is the lower right side pain, seems to be on the pelvic bone and let me tell you, THAT IS ONE MAJOR PAINFUL AREA!!!!! Ive asked till im blue in the face about the pelvic bone pain, and no one knows what causes it. I am so sorry you have to go thru that, as i know how extremely tender it can be. hopefully we'll find o ut one day what it is.

 
Old 12-20-2009, 05:08 PM   #4
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Hi, yes I've had bladder and pelvic pain with fibro going on 7 years now. Two urologists diagnosed the bladder pain as interstitial cystitis and one urologist doesnt' think it is, he thinks that it's the fibro and the bladder is just an innocent bystander. I don't have the typical urinary urgency or frequency that goes with "IC". I've had the works - bladder instillations, Elmiron, cystopscopy with diagnostic lap x 2, all kinds of meds. Nothing works. Anyway, I try to watch the diet, stay away from vinegar, anything tomato, spicy foods, no soda, coffee or alcohol. It definitely makes the pain less. I also take Savella which helps with the fibro pain. If I'm reallly suffering I take Vicodin, as that's the only med that eases the nerve pain. I no longer try to search for answers. After 7 years I and am now just learning to accept it and get on with my life instead of running from doctor to doctor. I'm an RN and it drove me nuts not knowing what this is. They can't help anymore and I don't think they really know what it is anyway. I'm just waiting for the day they come out with a new medication to dramatically decrease the nerve pain and a miracle that they find a cure.

 
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Old 12-21-2009, 08:25 AM   #5
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Thanks So much ya'll for commenting. It helps to know that i'm not the only person with this pain. And Yes that area is really painful. I've noticed that it hurts more when I have a flare up with my right side, like now. My Right side is hurting a Lot more then my left and it's miserable. I was trying hard not to cry in church yesterday my shoulders, back, chest and neck hurt soo bad.

 
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Old 12-21-2009, 10:49 AM   #6
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Yes, it does hurt so much more when youre having a flareup, sex is outta the question when its hurting that bad. Fortunately i have a very understanding husband, dont get me wrong, i love sex lol, but NOT when my pelvic bone is hurting so bad that it feels like its broken. He'd better be understanding, that or we'd be divorced by now lol. But yea, ive had mris, xrays and just from a diagnosis of mild ostoponea, nothing else shows up. But i do wonder if its a nerve that is maybe being crushed by a bone or muscle, i have no clue. All i know is that a flareup adds so much to the pelvic pain, that about all you can do is break down and cry when you cant take the pain anymore. Ive tried heat, and ive tried ice, nothing works.

 
Old 12-21-2009, 05:11 PM   #7
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Thanks jenitti. Thankfully my hubs is pretty awsome too The other night it woke me up it was hurting so bad. I guess I was sleeping wrong because my shoulder and arm were Killling me too. This FM stuff sure does Sux!

 
Old 12-22-2009, 01:54 PM   #8
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Yes to bladder and pelvic pain. I have gone to the doctor a number of times to find out that I didn NOT have an UTI, even tho I swore I had one. Also, I had a lot of pain in my lower pelvic area on my right side and it turned out to be endometriosis and I had a laprascopy where they removed it. It has made a huge difference.

Please check out any new symptoms.

 
Old 01-04-2010, 09:14 AM   #9
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

SAHM, look up psoas muscle (in any good trigger point therapy book or online). Find a good deep tissue massage therapist who does trigger point therapy. That pain that you describe is so incredibly painful and so deep down. My gyno touched my ovary and I nearly came off the table, so after 10 months of dealing with that severe pain, we though we had the answer -- a cyst. Surgery did nothing. A few days later they took out my gall bladder and still the pain persisted. After 15 months of severe pain, I finally tried a massage therapist who pegged it and worked it until I was in tears in just one session. Deep tissue massage seems way too rough for people in our shape, but it is the answer to so many oh-my-gosh-what-is-this-new-pain days. A few days after that session, and wow, the pain was freaking gone. I still get it from time to time, but now I know where to get help! I feel for you. That is severe pain in a very hard to diagnose area.

 
Old 01-04-2010, 04:38 PM   #10
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Thanks Baserockermom! It does feel a Lot like an ovarian cyst. Had them a lot before. But I don't have an Ovary or tube on that side due to a stupid *&$#@ Drs mistake during a D&C 4 yrs ago. I wonder sometimes if It could be scar tissue hurting but man that would be a Lot of scar tissue to hurt like that. Thanks for the advice.

 
Old 01-04-2010, 05:36 PM   #11
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Take care, kiddo.

 
Old 01-05-2010, 05:32 AM   #12
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Hello Ladies,

I don't know if perhaps my experience can help some of you but just in case it can:

I had surgery this past April to remove my left ovary and tube due to a large ovarian cyst. Since the surgery I began to have painful bladder spasms at the end of urination. This would come for about a week and then go away so I figured it would eventually go away. Over a four month period the pain got progressively worse and even occurred at the beginning of urination, during and even afterwards. I also began to have the pelvic pain that some of you have described here ... right around the pubic bone area and sometimes to the right. No longer necessarily when I urinated but more often throughout the day.

I did a lot of reading and figured it may be some sort of interstitial cystitis so I changed my diet to see if it would help. At first I thought it did but then the pain would come back and it began to be more and more intense so I contacted the gyne who had done my surgery. The gyne consulted with a uro-gynecologist and then called me back with two choices of treatment: either small doses of Elavil (an anti depressant which is also used in smaller doses to treat nerve pain) or Potassium Citrate. She said that this condition would take between 4 to 6 months to go away once the treatment was started so to be patient.

Since Elavil is an anti depressant (also now being used for things like nerve pain from cystitis and fibro) with more side effects, I opted for the least invasive treatment, the Potassium Citrate. For the past 4 months I put 3 K-Citra pills into 500 ml of water everyday, mix and then sip this throughout the day. After four months I have experienced a VAST improvement in my symptoms and not only is the pain, when it occurs, MUCH less intense, but I have very few flare ups now. I would say that I am almost healed although since the pain comes back from time to time (for about 2 days or so, thankfully) I still have to remain on the treatment. I was told that when the symptoms go away completely I have to gradually go off the K-Citra. I am hoping that another month or so will get rid of the symptoms altogether. The Potassium Citrate alkalizes the urine and does help the condition so I also have to be on a diet with no alcohol, coffee, tea, tomatoes, dark chocolate etc.. I also drink a lot of mint tea and camomile tea which I have read are good for the bladder (as are things like milk and almost anything that is used to also combat heartburn like rice etc.. same protocol of foods).

Two books which may be useful to you are "A Headache in the Pelvis: A new understanding and treatment for chronic pelvic pain syndromes" by David Wise, Ph.D. and Rodney Anderson, M.D. and "The Interstitial Cystitis Survival Guide" by Robert M. Moldwin, M.D., F.A.C.S.

Pelvic pain is something which is poorly understood, even by specialists such as urologists, gynecologists and gastroenterologists. Surgical procedures to help get rid of the condition often result in either no result or worse yet, a worsening of symptoms (or additional pain symptoms). There are many urologists, gynecologists and gastroenterologists who are now specializing in pelvic pain and they are usually set up in teams with other specialists. For example, a urologist may team up with a uro-gynecologist, a physiotherapist, a pain specialist (an anaesthesiologist who specializes in pain), and a psycologist. This team works together to discover the trigger points of your pain (not always the same for every person) and to put together a protocol which will help to alleviate it with time (example, exercises you do everyday, combined with special physiotherapy sessions which work on the trigger point(s) and psychology sessions to help curb "catastrophic thinking" etc..). The first book I mentioned to you describes one such protocol called the Stanford protocol. This involves teaching the individual how to get in touch with and learn to relax on a regular basis, the pelvic floor muscles. It also discusses how people with pelvic pain tend to be "catastrophic thinkers" .. I think you all know what I mean ladies .. it takes one to know one, right ? This is where the psycologist comes in. This new approach which uses physiotheraphy, psychotheraphy, relaxation techniques etc.. is becoming the new standard for the treatment of pelvic pain. They are now learning that many people (especially women) tend to keep tension in their pelvic floor muscles and this causes all sorts of problems. With time these muscles become shortened, taut, painful and very tender. As the individual feels more pain, they tighten everything even more (it is difficult to relax when you are feeling intense pain) and the cycle continues. This causes all sorts of problems with the bowels, bladder, tailbone area etc..

Anyway, I invite you to look into this, especially if you are not getting any results from your current doctors. Most specialists are unitiated in this field and they will often just do what has been done in the past (colonoscopy, cystoscopy etc..) and if they see nothing they send you home. YOU DO NOT NEED TO ACCEPT THIS as there are now physicians who are making groundbreaking research and progress in this field WITHOUT resorting to horrible surgergies like removing the bladder or destroying the lining of the bladder in order to try to treat the pain (they actually found that when they did this, the pain persisted ! ... probably because the pelvic floor muscle problem was still there).

It doesn't hurt to seek out a new option and I sincerely hope that you ladies find a solution to your pain. No one except someone who has experienced it can understand how debilitating something like this can be. It changes your outlook, your spirit, your confidence and your anxiety levels until you realize that you are becoming a totally different person than before. In addition, you feel like murdering people around you (including physicians) who either make light of your situation, or who purposely ignore it (not understanding why you simply cannot "decide" to ignore the pain and just "be happy").

Hang in there ! Treatments for this type of problem are slow in coming but they are currently available. You just have to find a doctor who specializes in this type of thing. All the best to you all.

Estria.

 
Old 01-05-2010, 08:12 AM   #13
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

I have had that too, although not experiencing it now. I have also had problems getting urine started at times. I believe mine has all been meds related.

Would love to hear what your doctor says.

Hugs,

Pam

 
Old 01-05-2010, 04:17 PM   #14
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Great info thanks! As for right now and really for the last week I've not had any problems with the pain or anything like that. I'm Praying that it'll stay that way.
I'm sick with a sinus infection now too and will probably try to get in to the Dr tomorrow or day after and i'll talk to him about the pains then and see what he says.

 
Old 01-06-2010, 04:26 AM   #15
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Re: Bladder and/or pelvic pain with Fibro? Anyone?

Hello,

I have read that interstitial cystitis does tend to go along with certain conditions such as fibromyalgia so be aware of this. Interstitial cystitis comes and goes so if the symptoms do come back, get some help for it so that you don't have to suffer for nothing.

Since you do not have any urinary symptoms though (urgency or painful urination) then chances are that it is just a passing thing. Take care.

Estria

 
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