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Thank you
This was my first stop after registering on IC-Network. And it has helped me greatly. THANKS!
This was my first stop after registering on IC-Network. And it has helped me greatly. THANKS!
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Exposure to an unclean hot tub 2-17-07 FIRST UTI
(Got ringworm-like sores from it before)
(Someone else got what looked like 'eye herpes')
(My husband got an ear infection. We were all just sitting there!)
SYMPTOMS: Severe Urgency/Frequency for 18 months, food sensitivity, widespread nerve pains (random and everywhere), deep bladder pain that developed into flares at 4 months. Completely unreasonable diet sensitivity.
TESTS: Nothing showed in urine cultures, CT scan, Cystoscopy, Lumbar puncture, back and brain MRIs, EMG tests.
Hydrodistension Surgery/Biopsy showed minor glomerulations, inflammatory and mast cells, and a rare eosinophil. Blood tests show elevated ANA.
CONFUSED: My hands and feet started falling asleep. I got twitching nerves or muscles everywhere. I started having concentration and memory problems, vision problems, then fatigue and chronic migraines. Fibromyalgia diagnosed, SSDI disability awarded at 4 years, then gone at 7 years. Won the appeal. IBS and esophagus spasms at 6 years.
MEDICATIONS: Marcaine/Heparin/Sodium Bicarb instills, Lyrica, Nortriptyline, Uribel. Paxil and Trazadone from before. Painkillers as needed. Supplements include CystoProtek, DH Aloe, Colostrum.
PREVIOUS CONDITIONS: Sudden onset of double vision, Paxil Discontinuation Syndrome, PTSD -
Thank you so much!
Thank you so much for the really helpful synopsis of your experience with IC. I was diagnosed a year ago April and my life (as you know) has changed dramatically. I have had on-going "hot spots" of inflammation throughout my body for the past 20 years - I have scleritis (inflammation of the connective tissue of the eye), costochodritis (inflamed sternum), IBS/bouts of non-specific ulcerative colitis and now IC. I have a wonderful urologist but unfortunately I could not tolerate both Atarax and Elmiron (had very severe side effects). So I am basically on nothing but Prelief before meals and probiotic capsules, as well as eating a very careful and IC-friendly diet. I still miss coffee so much! Anyway, I have seen many doctors for all of my inflammation issues and each one runs a ton of tests (lupus, MS, rheumatoid arthriitis...) but nothing has ever come up positive. I just need to find someone who can help calm my system down. I, too, did physical therapy in the beginning and found it SO helpful (she specialized in IC and other pelvic floor dysfunctions). Due to a change in insurance, I haven't seen her for a while and really need to go back.
Wow, that was a lot more than I meant to write...really just wanted to thank you for your honesty, insight and info...
Hope you are having a pain-free day!
Laughing and crying,
you know it's the same release...
-Joni Mitchell
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Hi Caitlin
I think I fall into the same category as you. Diet and alcohol has no effect on me and I don't experience any frequency or painful urination. I just have pelvic pain and some burning. I have been on meds since March 2006 and with no significant improvement. My urologist told me he doesn;t know what;s causing my pain but I have a suspicion it may be nerve related aswell. Did your doctor suggest anything to help with this. I am currently waiting an appointment with a pelvic pain specialist but there is a waiting list of 5months - Aaaagh!! I need something to let me function normally again as I'm slowly going insane!!
Anniepat
Vancouver
Canada
Meds - Elmiron, Atarax and elavilComment
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Great post. Thanks. I would only add that if you aren't fortunate to have an understanding/competent medical professional, to try, try and find one. I'm waiting to be able to change to one (insurance issues) whom I've identified through connections here.Waves
Diagnosed 6/4/07, also IBS, migraines, allergies,
hysterectomy, previous fibroids, cysts.
Help measures in process -- hope to start PT, etc. Main pain meds: HEAT, Tylenol, Alleve, Working on diet!
Cold infusion of Marshmallow Root tea 2x day, Citrus free Quercetin 2x day
I am not my illness -- it's just a facet, I aim to enjoy life and pursue my dreams! I hope it makes me a more compassionate human being.Comment
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AMAZING. One day I will write something like this as well, and help everyone else out from what I have learned! <3 Since I am the queen of research... lol I am always searching for posts like these...I found over 500 the other day,and they are all listed! Not sure how, but I know it was on Google, and took me hours to find. ANYWAYS. I know there are always new people every day and jut like me, they can always use hope!! This first post is sooo helpful!!
Wishing everyone an awesome day!
Jenn28 yrs old,
I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again
I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC. 
What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!
Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!
Me in my graduation gown!
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im glad this post was brought back i love it too and am a fellow queen of research myself.hope to write something similar to this someday.Newly IC diagnosed as of February 2011.
Medications I'm on that seem to work:
Zoloft- one once a day
Butrans pain patch 5 mcg (THANK GOD FOR WHOEVER INVENTED THIS!SO MUCH PAIN RELIEF ITS UNREAL,I AM IN NO PAIN AT ALL UNLESS I STRESS OR SCREW UP ON THE DIET)
Failed Meds:
Elmiron-after 4 months,digestive side effects got to be too much
tramadol-allergic
DMSO treatments(5-6)
probiotics
THERAPIES:gardening,cooking,IC Diet,Counseling,Lots of warm baths,stress reduction,heating pad or ice packs,meditation/deep breathing,listening to relaxing music,having fun on pain free days,drinking chamomile or peppermint tea,pelvic floor physical therapy
AROMATHERAPY-candles,incense
Village Naturals Aches and Pains Peppermint Bath Salts
Johnson and Johnsons Lavender Melt Away Stress Body Wash/Lotion
ACUPUNCTURE/HERBS
Significant pain relief so far.
MAY TRY:yoga,swimming/hydrotherapy and anti-candida diet if i can kick my sugar addiction
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***TO MY IC SISTERS AND BROTHERS:WE ARE OUR OWN ADVOCATES!,PLEASE DO AS MUCH RESEARCH ON YOUR OWN AS POSSIBLE AND TRY DIFFERENT TREATMENTS TO GET WELL.NOT ONE TREATMENT WORKS FOR EVERYONE.MOST IMPORTANTLY,TRY TO KEEP A POSITIVE ATTITUDE,DISTANCE YOURSELF FROM NEGATIVITY/NEGATIVE PEOPLE AND NEVER,EVER GIVE UP!***
Add me on facebook Angela Hasic
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Lord, make me an instrument of your peace;
where there is hatred, let me sow love;
when there is injury, pardon;
where there is doubt, faith;
where there is despair, hope;
where there is darkness, light;
and where there is sadness, joy.
Grant that I may not so much seek
to be consoled as to console;
to be understood, as to understand,
to be loved as to love;
for it is in giving that we receive,
it is in pardoning that we are pardoned,
and it is in dying [to ourselves] that we are born to eternal life.
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Thank You, Thank You
This was a very hopeful read. My symptoms started a month ago and I am working with a urogryne and a PT and doing and IC diet. My anxiety has blown off the roof and I read your post every day to remind me this takes time to heal. When my urogyne and psych would not give me Atraxax I asked my primary.
Thanks!
IC symptoms started May 10, 2010
Taking Cytoprotect
Prelief
Aloe Vera Caps
PT and home exercizes
Lexapro
Clonazapam and Depakote (Bipolar dx after daughter born 2 years ago)Joslyn
IC symptoms in May 2011
Mild IC dx by Cysto July 2011
Symtoms decrease 80% by September 2011!
Tums 100mg
fish oil 3-5 grams
Probiotic 5 billion
Magnesium
Bladder Ease
Unda Drops
Mediclear Plus Protein Shake
Physical Therapy Graduate!
Meditation 2x a day
Running
Castor oil pack
Teas (nettle leaf, linden flower, camomile, marshmellow root)
Have tried
In office instills (pridium, heprin, lidocain, elmiron)
Cystoprotec
Desert Harvest Aloe
atarax 25 mg
Vesicare
Lexapro
5HTPsancturaComment
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This post also gives me hope because I am on the exact same things!.. I know they take time to work (which has been long enough thank you very much) lol.... but im trying to get my hope back after this flare. Re reading this messege helped alot this morning
Jenn28 yrs old,
I have little to no problems now with my bladder, unless I am very stressed out, I forget to take Elmiron for a few days, or I eat or drink something that I know is a trigger...(i.e) like eating a tomato or drinking tea.... Took a long time to get here, but it IS possible to feel good again I just want people who are new to know that IT CAN get better, and for every one person who is suffering, there are hundreds of others who feel GREAT because they have control of thier IC.
What Works: Tylenol 3's, Pyridium, Elmiron (Going on 4 years now!) HOT showers!!!
Medications/ Vitamins: Elmiron-100mg 4x's daily Tylenol 3's/Advil (flaring) Vitamin D, WILD salmon oil 4x gels in the morning, Women's ONE a DAY multivitamin (the gummy kind doesn't make me flare) and PROBIOTICS!
Me in my graduation gown!
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I Agree WOW. mostly everything you have said i did about the same thing,,
but i didnt know about the L Gel? Is that over the counter or perscription? That would help with flares.. just started all the meds a week ago.. i know i have a long way to go.. dieting and will look into pelvic exercises. thanksComment
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