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Hi All , Im a newbie here
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crkshnks79 posted:
Hi everyone ,
Ive read several posts and questions from this group , I havent seen yet someone w similar issues to me , but PAIN IS PAIN . I have Endstage Interstitial Cystitis ( bladder disease, the pain of this disease is compared to an endstage bladder cancer patient ,so you just have an idea ) , Severe nerve damage throughout my back , hips , pelvis , groin , vagina , and rectum . I also have severe muscle damage in my back and pelvis . I also have a chronic condition called Vulvodynia , Vestubulitis , and Clitordynia which can cause severe pain and irritation in the genital areas. Along w Chronic Fatigue Syndrome and some other lovely diagnosis's . I fought for 8 yrs to even get a diagnosis , no docs believed that my pain was real ( as all of these conditions cannot be seen through regular diagnostic imaging). I was told I had pelvic pain because I was sexually assaulted ( 10 yrs BEFORE the pain started , mind you ) that I was just " over-acting " , that I was a dramatic women , that I was drug-seeking etc etc . Needless to say I have some security issues w doctors . BUT eventually and on my own , I hunted down doctors who knew what was going on and were wonderful !!!! Unfortunately for me , the damage was left untreated for so long that nothing can be done except to try to improve my quality of life through pain meds and other medications and to have my bladder removed (Im 31 yrs old , by the way ). I have failed EVERY treatment plan for my conditions , altho most people w my diseases dont respond to the treatments either , only if they are caught in the beginning stages might it stay " managable" . Anyway , I was seeing a pain management specialist 2 hours from my home that was phenominal !!!! BUT I had to pay cash to see him as he didnt accept my ins and w me not working because of my conditions , that couldnt continue . So I transferred to one in the city closest to me , BUT 4 months into seeing them they droped my ins and I withdrawaled something HORRIBLE ( from fentanyl 2.5 and 30 mg percocet ) , after that my ins was canceled . SO I just got my ins back 9 months later and now need to find new pain management and honestly Im scared to death of having to " Prove " to the doctors my pain all over again . At this point I only take neurontin 600mg a day , and elavil 50 mg at night , for narcotics I wind up in the ER about 3 to 4 times a month . Surprisingly the ER is knowledgable of my disease and they are very sympathetic but as Im sure you guys know thats no way to try to be treated long term . I know I need narcotics in order to function , I can barely get out of bed and walk at this point , I scream bloody murder when I pee cause of the pain , I cant take my kids anywhere , I cant clean my home , basically I cant do anything through this pain . My quality of life is a 0 at this point . I did file for disability benefits , had my court date and am now waiting for the decision . Along w pain meds I would like to go back to having my nerve injections and was about to start spinal injections to see if that would help w anything but my ins was cut . I just wanted to introduce myself and say HI , I belong to a support group for my Bladder disease and it has been so helpful , I think having this group would be just as beneficial as pain is pain and its hard for normal people to understand what a person w chronic pain goes through .My family is not understanding of me wanting narcotics , they have called me a " pill popper " and "addict " in the past from me being on pain management , their ignorance is heartbreaking and maddening . Well I guess thats it for now , I hope everyone is having the best day that they can have :)
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Caprice_WebMD_Staff responded:
Hi Crkshnks and welcome here.

You're right; pain is pain.

Thank goodness you have your support group and I'm glad you found us here as well. I understand about how daunting it can sometimes be to feel you have to 'prove' your pain all over again. I'm sure others here will have some ideas for you on that.
Treat people as if they were what they ought to be, and you'll help them to become what they are capable of becoming. ~Goethe
 
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TDXSP08 responded:
Well I have IC as well but its kind of a side note on a horrible Medical Mystery Tour of Never Ending Pain and Degenerating Neuromuscular and spinal diseases that decided to attack me 6 years ago I am 41, i Listen to all my "ISTSTS" (neuro, endo pulmo psycho Etc....) and Dr.'s sing the same song every visit "There is No treatment, there is No cure You Will die from this", all they can do is react to things, splints, braces, wheelchairs, pain med's, ventilators, all that stuff . And like you i have to spend whole days driving to the city to get my care because the Doctors Locally are less than useless when it comes to anything with treating Pain. one of my Issues was first seen in 1896 and since then i am the 203 American to be confirmed with it so all the doc's in the city love my DNA because no other american has had this disease in the Era of DNA science so they will get to study mine for many years into the future. But anyway Welcome to the Board !

Peace
 
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cybil53 responded:
So sorry to hear what you are going through, I have been there I also have IC, Fibro,DDD and a few other diseases. I was surprised when you stated you had to quit taking your pain meds because you lost your insurance. I too lost my insurance but there is no way I could go without medication. Are you aware that the pharmacutical companies have programs so you don't have to go without your meds? That is what I did and I received my pain meds along with all my maintenance drugs. The program is wonderful and is very little paper work. I continued to get my meds from them until my disability was approved last year.
As far as your IC have you seen a urologist that specializes in IC? I went to 3 urologist before finding this one and he is practicing cutting edge treatment, has written many articles and has been a guest at the National IC Foundation and has just founded an IC womens center where I am being treated. He has many trial studies he also does. After seeing him the first time it was the first time I had hope. Have you had all the treatments like instillations, Elmiron,vagina valuim, etc? and when is the last time a doctor has done an exploratory of your bladder? Do you have hunners ulcers present all the time? Also with your other diagnosis has the doc told you that you have pelvic floor disfunction?
We know for right now there is no cure but we have to try every option out there. Believe me I understand how painful this is and how it effects your whole life.It has taken quite a toll on my marriage. As far as your family no they can't even fathom what our life is like with this disease. I have come to that conclusion and try not to talk about my pain to them or tell them what pain meds I take. It is just to frustrating, because they just don't get it. Until they are peeing blood and screaming because it hurts so bad they won't know.
I just had another exploratory 2 months ago where my doc went in and scraped the hunners ulcers and inserted med to calm things down. .Also I donated tissue from the bladder for his study as he is determined to find a cure. I went for physcical therapy , am on meds and use a tens machine. Don't get me wrong I still have constant pain and then there is always the major flares but I am much better since being treated by this doctor. It is quite a drive for me to go see him 1 1/2 hours but it is worth it.
I have read on the IC site where some women have had their bladders removed. I hate to see you do that and just wondered if you have seen a doc that truly specializes in IC.
My heart goes out to you as an IC suffer, I hope you get some relief from this dreadful disease. Take Care!
 
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crkshnks79 replied to cybil53's response:
Hi Cybil53 !
I do a see great IC specialist ( I have seen several,but my current Doc has won many awards and also goes to all the IC seminars ,as well as written several articles and is up to date on all new and old treatments, Im near Philadelphia are you ? If so I wonder if we see the same guy?) I have tried everything you have suggested to no avail :( . I do not have Hunner's Ulcers tho . I do have severe PFD and vaginal physical therapy helped. I had actual Urologists tell me that IC does not cause pain !!! It never ceases to amaze me how un-educated some docs can be in their field of expertise ! As for the program for meds I didnt know about it, I assumed when I lost my ins and couldn't afford to see the docs to even get scripts in the first place . So I tried to deal w it on my own and couldnt . I won my disabilty case and just paid to see a new Primary doc and paid for my meds, but starting in Nov my medicare starts , THANK GOD ! I dont want to remove my bladder Im too young and scared to death to rearrange my body that drastically ! The only thing I havent tried yet is Botox in my bladder , my doc is going to try that once my medicare kicks in , have you tried that yet ? Do you belong to the ICnetwork ? Thats the support group that has helped me so much ! My new primary put me on 10mg of Oxycotin and 5 mg percocet for break through until I can get back into Pain Man. , since I havent been on alot of pain meds in afew months its working well again , like you I have constant pain but it makes it more tolerable . Do you have Pudendal nerve damage ? Mine is sooo bad it feels like my bottom and genitals are being tasered all the time .I was with my fiance for 8 yrs and we have 3 children and he left me 4 weeks before our wedding because he couldnt handle my problems , so I understand what you mean by it taking a toll on your marriage , Im so sorry to hear that ! Thank you for introducing yourself , Im sorry you have all these problems too , it s horrible I dont know how Im going to get through the next week let alone the next 40 years ...


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