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 IC Queen: 45 years of IC

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IC Queen



Posts : 42
Join date : 2016-04-13

PostSubject: IC Queen: 45 years of IC   Thu Apr 14, 2016 2:54 am

Symptoms:
Feels like bladder lining scraped, acid poured in, set on fire, 1000 knives plunged into bladder; then horse kick to area. Often "bomb" hits down there with same pain extending to insides of arms, legs, and even along jaw. At worst, "white hot" pain felt over entire body. Began while I was in undergrad and playing intercollegiate volleyball. I kept having to leave practice to use restroom. Within a year, symptoms increased to above description 24/7.
Confirmed medical diagnoses:
First was urethral syndrome, then biopsy showed end stage IC. Other diagnoses include, but not limited to (hey, it's 300 words) IBS, fibromyalgia, rosacea, migraines, vulvodynia, and allergies galore including latex, meds, IVP dye, foods, dust, mold, pollens, pets, etc. Note: JFK diagnosed with urethral syndrome in the book about his many illnesses.
Treatments:
Except for reconstructive bladder surgery and a few newer things; you name it and I tried it. Only 2 things have ever given me a bit of relief. One, home heparin cocktail instillations daily for 10 years without a UTI.
Second, Oxycodone begun, both under care of Dr. R. Evans. Lived and worked with IC for 30 years without pain meds. It's just how we were treated in the "dark ages of IC." I recall a clinician asking a panel at an international IC conference, "How long should we try different treatments before we provide pain medications." An MD on the panel asked, "How long would you like to be kept in severe pain? Treat the pain on day one."
Just a few of the treatments that did not help:
Numerous Cloropactin treatments without anesthesia or any pain suppressants, DMSO, fulgeration, SP 54 from Germany which became Elmiron in the US, Tegretol, nystatin (saw the original candida man), biofeedback, acupuncture, hormones, antibiotics, allergy tx, Furacin sp? Inserts in the mid 1970's, placed into urethra until they melted (a memorable hell) and 1000's of diet modifications. An art major I switched to nutrition in grad school and ended up teaching nutrition in nursing schools and universities.
Final thoughts:
Have red hair, fair skin, and freckles and have met and spoken to many with this combination. Also met many nationalities and looks, but always noted at the huge IC meeting that there were more redheads than in the general population. Redheads I have heard require more anesthesia. Finally, I participated in a many studies over the years. My favorite was the one that showed that IC scored higher than cancer pain on the McGill Pain Inventory.
       Just once before I die, I would like to have a day without pain.
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dantheman



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Join date : 2016-04-04
Location : Adelaide

PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 5:57 am

Jesus
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IC Queen



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 10:01 am

Well, dantheman...your response cracked me up. My healthy, healthy parents died at ages 90 and 87. They were extremely supportive of my IC and your note would have made them laugh.

The best years of my 45 years of IC were when I self instilled heparin at home. I am VERY aware that different things help different people and this is not the answer for many or even most. I had to stop because after 10 years I hit menopause and started getting infections. Bummer. Incidentally, I was married to an infectious disease doctor until I was 40 years old and to say that he searched for a responsible infection causing my IC would be an understatement. But that was over 25 plus years ago and am sure processes have advanced.

FYI: I would not cath myself without a pediatric catheter. Even using a size 10 catheter would render the process unhelpful. Was initially given lidocaine, but found it to be irritating. After a long day at work, the heparin cocktail installation was so soothing that I could rebound and clean my home or whatever. Unlike DMSO which always made me worse for days.

All my best to my IC brothers and sisters and the amazing researchers we are pulling for! I plan to donate to the cause when my ship (inheritance) comes in.
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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 11:56 am

I'm glad i made you laugh. I am in recovery as we speak. Just had botox instilled into my bladder. They want me to wee before i can leave. I have a problem emptying my bladder. What treatment do you do now if you can't use heparin
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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 12:18 pm

What i should have asked is how did you manage to work with frequency and pain and urgency. We're you better some times? I have struggled since this thing started, can no longer work on my own business. Just last my ability to function yet you have been going for 40 yrs. Your story is amazing.
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IC Queen



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 2:41 pm

Feel better, I am pulling for you, dantheman. Your initial response also reminded me of a friend's young daughter who said, "Jesus, Jesus, Jesus, that's all we ever talk about." Humor has saved me, I have amazingly witty friends. But I do feel like I have been through hell in my life. I know quite a few people who would be my age now who killed themselves as long as 25-35 years ago. My mom did not want me to do it, and I wanted to make her happy. Now I have made it so far, might as well go out naturally. But the suicidal thoughts are still always with me, just to stop the *#!€* pain. Back then, I knew a number of people who had their bladders taken out. They were the worst and among the first to kill themselves, because they still had horrible pain, plus non stop infections, leakages, and so on. That was a long time ago. Don't know anyone these days who have had the procedure. So am not up to date on this.

Today, my beyond wonderful family doctor gives me oxycodone, hydrocodone, and some other meds who help these work better. I see him once a month and he fiddles with what I take. But I am still in pain beyond description or wouldn't be out there searching and writing. I worked until I was 50 and my urologist told me it was time to quit. Received disability in 4 months, pretty much a record. The man I spoke to about my disease said my urologist's letter was the best he had ever read for all diseases. I didn't bother to tell him that my urologist wrote the guidelines for IC disability nation wide, so he obviously knew what to say!

My pain has always been severe; never, ever any let up. Work was "no bed of roses, no pleasure cruise" but it WAS a diversion to focus on something besides my pain. I had some great department heads who let me do much of my college work couch side, then just go in to teach classes and meet with students. I was also the director of the nutrition internships and could do most of that couch side with my lap top and printer. I slept with my laptop for years and years. Spoke to students over the phone as they were based over a wide geographical area in their internships. So I was able to work in a way few people would be allowed to do, that was my "trick." Even so, I sometimes don't know how I did it and certainly could not have worked at any normal employment.

I wish this wasn't my story. I would prefer to be an IC Princess, at least! Another thing that kept me going was working for our cause. I have been on TV and radio with urologists, wrote a newsletter for my area, been in numerous newspaper articles, set up support groups across my region, lobbied for research, and spoke to hundreds and hundreds of newly diagnosed pts. in order to point them to the right doctors and avoid my mistakes. Activists usually last longer in most diseases, don't they? Just got a request for a photo to go with an article I wrote about being politically active for better IC treatments and hope of hopes, a cure. Thinking of using a photo from 20 years ago, they didn't say
current photo!
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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 3:36 pm

I hope your post gets read by Barry and his team. It is stark but very truthfull. If urologists do know how debilitating this condition is then why has so little effective research been done on it. Your words are how i feel every day and i feel for those 12 and 13 yo kids with it. Could you do me a favor? There is a professor i have made contact with in my home town of Adelaide Australia. He is not a urologist but a researcher of pain and pain science. He admitted that he knew very little about IC but was prepared to learn. He seemed intrigued and perhaps inspired by the fact that Barry Marshall was heading up this study and he was keen to get in touch with Barry. I can't tell you how many emails i have sent to professors and urologists and any one who will listen. Any way I'd love you to get in touch with this pain professor and tell him your story. But I'm not sure if I'm allowed to put his details here. His name is Lorimer moseley and he is professor of clinical neuroscience at the university of adelaide. He has quite a presence on the Internet and has done some Ted talks if your interested. I think he should hear your story as my dream is to inspire more professors to learn about this disease so that the next generation don't have to suffer like us. You never know who will find that missing link that tiny piece of information that will help to unravel this crippling disease.
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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 3:55 pm

Sorry his email address is Lorimer.Moseley@unisa.edu.au i don't think he'll mind.
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IC Queen



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PostSubject: Re: IC Queen: 45 years of IC   Thu Apr 14, 2016 7:41 pm

dantheman,
I concur about getting the word out, you'd be amazed at some of the famous people with IC, who won't "come out" of the bathroom, so to speak. So already sent my story to Lorimer. Funny you thought my life summary was "stark," though my best friend from grad school, then and throughout the years read my story before I put it up and called it "upbeat." I didn't want it to be negative. But who cares about me? We really need a super famous person with guts to shake things up. In this era of miracles, surely somethings an be found to help us. One famous person (like Rock Hudson for AIDS) could make a difference in terms of public knowledge and at least better treatments for us.
The queen now needs some beauty sleep!


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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Fri Apr 15, 2016 5:56 am

Thankyou for sending your story to Lorimer. I wonder why those famous people won't tell their story to the world. Perhaps they don't have the severe form and they manage the condition easily. What ever it is is a shame because we need them. I only know of one actor who was on the tv series ER i think he was a red headed actor from memory.
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lak78



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PostSubject: Re: IC Queen: 45 years of IC   Fri Apr 15, 2016 7:21 am

Hi Guys

I've been reading your posts and these recent ones made me smile. I have made an "IC friend" here in Brisbane and we often text each other and chat about living with this hellish condition, without each other, things would be a lot harder. The one thing we always say is how much we wish (even though we don't really wish this one anyone!) someone famous or really really rich would get IC because we're sure a cure would be found pretty quickly!! We also have written to a couple of Professors (including Prof Marshall - that's how we found out about the research) to try and get some IC exposure so I think it's fair to say that a good lot of us are really trying to get this condition put out there which is great.

I really wish you both lots of luck on your IC journey and dantheman, I hope you have some success with your botox, keep us all updated on how it goes. It's an unfortunate situation that brings us all together but this research is the best news ICers have had in a long time!

Take care Smile
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dantheman



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PostSubject: Re: IC Queen: 45 years of IC   Fri Apr 15, 2016 8:07 am

Thanks for that. There is a Facebook page called Aussie IC if you weren't already aware which would like you to join up to. Oh and if you haven't already done so, send an email to Lorimer.Moseley@unisa.edu.au. I think most of us are aware that this disease requires a multidisciplinary approach to finding a cause and cure. Simply thinking that its a bacteria that causes it and that antibiotics are the cure is a bit simplistic, it would be great but simplistic. If you read Dr Parsons research and indeed any research you realise how many things are going on in the pelvis which contribute to this condition. Pain, PFD, Nerves, inflammation, up regulation, depression, anxiety. Wow what a task.
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IC Queen



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PostSubject: Re: IC Queen: 45 years of IC   Fri May 27, 2016 10:14 pm

http://hellogiggles.com/lena-dunham-just-got-way-honest-health-problem-nobody-talks/

American cable star with IC.
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IC Queen



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PostSubject: Re: IC Queen: 45 years of IC   Fri May 27, 2016 10:15 pm

http://hellogiggles.com/lena-dunham-just-got-way-honest-health-problem-nobody-talks/

American cable star with IC.
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