Hi,its me again..I am still waiting to get into the gynocologist before they will even let me into see a uriologist..im sick of waiting,im sick of day by day going through this pain and annoyance.I have noticed a pattern,when i get done eating dinner BOOM the feelings of a UTI,and "sharp"feelings in my bladder begin to occur along with the feeling of having to urinate and the pressure.Is this normal?I ate fish filets and mac n cheese tonite...whats the deal??I just wanna see a doctor and I PRAY he will be one to look into detail.I have been keeping a journal with when i have the pains times and dates,and just started writing down what it is i have been eating.I have the feelings everyday almost,but there are some days I dont have any symptoms.They occur mostly after intercourse and eating.I just wanna know whats going on. banghead
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hello lacey,
this is normalhave you tried the ic diet that is listed on the boards? it will help you know what to watch out for.
maybe prelief will help you take it before you eat.
i hope you find some more answers soon if there is anything i can do to help please pm me threw the boards i will be more then happy to help if i can.
grouphug Rhonda.Medicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore! -
Hi Lacey,
I'm so sorry to hear that you are having such trouble. Waiting to see doctors can get old pretty fast, can't it? grouphug
I hope you can find out soon what's going on. I hope it's not IC!!!
If you want to talk, you can PM me through this site if you like. I'm here!
hi Jen****
Jen
*Diagnosed with severe IC in 2004
*Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
*Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
*Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).
**I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.Comment
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Hi Lacey,
Your story is much like mine ! The same thing happend to me ! I hope you get relief soon ! grouphug Good luck at your appointments
KellyTo the world you might be one person but to one person you might be the world..
I am a newbie Angel ~IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.Comment
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Thank you everybody for all the quick replies!!!
I just wanna find out whats going on.If the doctor tells me its nothing im gonna see another doctor I cannot stand this,i just want them to give me something till im able to see the darn doctor.My symptoms are the worst during my menstral cycle,and they dont seem to be bad after that(except when i eat sometimes,or have intercourse)Once again THANK YOU grouphugComment
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Hi,
All the times you say you are having trouble are pretty common with IC. Hopefully you can get some help soon. Hang in there. grouphugJolene
"Life is what happens when you are making other plans" John Lennon
IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html
Information for Patients can be found here.
http://www.ic-network.com/patientlinks.html
Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]
Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]
"IC Angel Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you."
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just checking in i wanted to see if you was feeling any better I hope so. please let me know how you are.
Hugs and Prayers sent to you.
grouphug angel RhondaMedicine taken daily or as needed:
1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
2. MS.Cotin 100mg 3x daily
3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
4. Fentanyl 100 mg Change every 48hrs.
5. Gentamicin 80mg install after each rescue treatment
5 Leviquin 500mg self start as needed.
6. Klonopin 1 or 2 daily as needed.
7. Prosed/DS as 1 every 6hrs as needed.
I have IC, but IC doesn't have me anymore!Comment
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tis me
Well for some reason it wouldnt let me log into my other name so I had to make a new one..as far as how Im feeling??Well,I went to see a gynocologist today,she gave me the exam so when i get my results back i can go see a uriologist..the thing is she checked for blood in my urine today,and the results were horrifying..her EXACT words were "yup,you have TONS of blood in your urine and you need to give the dr the okay to go see the uriologist.I am scared and I cried a lil bit.I think everything will be alright though.I guess it was the words"tons"that made me freak out.I kinda told her what my family doctor said about his suspicions about me having IC.I have to now go talk to my family doctor and get a referal.I have been feeling decent,as I mentioned my symptoms are worse and BAD right before my period comes,I am having the pressure tonite,and kind of feeling "menstral like cramping"?is this normal?Thanks for your concern of my well being..ill keep you updatedComment
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welcome
hi I am new to the boards also, but have found this to be a lifesaver. At least you can communicate with women who really understand the 'pain'. YES my pain has always felt like really bad menstrual cramps. I always thought that was what the pain was just cramps and was always worse right before and during my period. Well I had a hysterectomy a couple of years ago, and the pain stopped for awhile. I guess I was in remission and just didn't know to be thankful! Now the low pelvic cramps are back and worse than ever. :eek:
I pray you will soon get a confirmed diagnosis, at least knowing what it is .. helps to know what to do. Hang in there and know you are NOT ALONE. let us know what is going on.
you will be in my prayers.
DeniseIt takes a little darkness for us to see the stars, and a whole lifetime to reach them.
Don't give up. I cannot take away your pain, but I can listen.
email me at [email protected]Comment
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Thanks
Thanks so much.It seems like recently ive been getting the menstral-like cramps..and the lower back painIT HURTS!I have also noticed my abdomen swelling...i dont know if that has anything to do with that or not.I am so scared about the "tons of blood in your urine"comment.I hopefull will just get a diagnosis soon..thanks for your prayers.My prayers are will all of you as well.
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I know the fear......we are here for you. From what I have read of your posts I would guess you have IC....and a smart family doc. Blood is not that uncommon in your urine for IC patients. I am so so so so so so sorry that you are already having bladder pain (atleast that is what it sounds like) and you haven't been diagnosed yet.
Anyway, WELCOME TO THE ICN!!!!!!!!!!!
Don't worry....whatever it is we will help you through it.
hugs,Faith, Hope, and Love,
Katrina
I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!
ICVolunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
or find me on facebook http://www.facebook.com/kat671?ref=profile
Be the Miracle! & Pay it Forward!
[email protected] please contact me...I am here to help!Comment
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Yep I have the tummy swelling.............it has been so bad recently, I can not stand to wear pants at all. (can't even get them zipped) So I have to wear those :frown: yukky tent dresses. and sweats on weekends.
Hang in there. love DeniseIt takes a little darkness for us to see the stars, and a whole lifetime to reach them.
Don't give up. I cannot take away your pain, but I can listen.
email me at [email protected]Comment
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*groans
I had the WORST menstral like cramps EVER last night.I just stayed my butt in bed this morning they were so bad.I dont think any of my family understand the torment im going through,if this isnt IC disease what is it?My hubsand grandma said"well lacey,you dont look like someone with a disease,your skin color looks good,your eyes are bright,and you havent been losing any weight(she is a RN)"she also said.."you might have gall stones or kidney stones"but the thing is FOR A YEAR NOW???Last night I felt horrible i wanted to go to the hospital.I had urgeny like you wouldnt believe..at night.During the day i has frequency..what else could this be that i am doing this...its killing me.My family dont understand anything and dont act like they really care...thy act like this is a minor thing.:banghead:
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I am so sorry you had a bad nightYou need the support of your family now, how awful they have been to you. Just vent to us. WE know how you feel and are hear to listen.
love DeniseIt takes a little darkness for us to see the stars, and a whole lifetime to reach them.
Don't give up. I cannot take away your pain, but I can listen.
email me at [email protected]Comment
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getting info to your family
Lacey
I'm sorry you're suffering and your family doesn't understand. Maybe once you get an actual diagnosis they will be more sympathetic..who knows..however, it may help to get some information from this organization (I don't know the actual website..duh...) but you can do a search for Interstitial Cystistis Network on Google or whatever and on that sight there is plenty of info for you to read and some stuff you can print and pass around to your familly (especially the RN) so they understand why you feel the way you do.
Best of luck to you. We feel your pain. and BTW...blood in my urine was the first step that sent me on my journey to my eventual IC diagnosis. It took 4 months from that urinalysis that showed blood, to the biopsy in September.That showed whether or or not I had the disease. (It was a big yes.)
TraceyI.C. DX'd following my "second hysterectomy" (the remaining ovary, that kept bursting and bleeding 2 years after my hyster/right oompherectomy, was removed in 2003. I was a special ed teacher. I am now very lost, and feeling rather hopeless in my life.
Medications I CURRENTLY take:
90 mgs Ms contin (45 mgs Am/PM)
Percocet as needed
Topomax 100mg day
Ambien 10 mg bed
desipramine 25 mgs
If people are good only because they fear punishment, and hope for reward, then we are a sorry lot indeed.
Albert EinsteinComment
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