IF YOU HAVE IC NOW AFTER SURGERIES VOTE IN THIS POLL PLEASE! Thank You!!!!!!!!!!

[sing_to_you]

PLEASE HELP WITH THIS POLL YOU CAN GIVE THE RESULTS TO YOUR DR. AND IT MIGHT HELP THEM FIGURE OUT A FEW THINGS. I KNOW IT SURE DOES INTEREST ME. IC HIT ME 5 WEEKS INTO MY RECOVERY AFTER HAVING MY COLON SURGERY. THANKS FOR PARTICIPATING.
SING_TO_YOU

[ldgb4]

I had immediate signs after my hysterectomy it was a day to two days after but it took a year to get diagnosed because the dr said since I didn't have a uti it was in my head. I know the poll is closed but I thought I would share mine.

Lisa

[kelly McC]

I see this pole is closed I was diagnosed after having a kidney stone crushed and 2 previous laporoscopy's and a umbilical hernia repair. Cant say for sure when my symptoms got worse or even started I had bladder and abdominal pain during childhood
Kelly

[tjackson]

I too have found this after the poll closed.
I only had one symptom prior to a lap for endo, which was urgency. My doc found the IC during that surgery, by seeing the bladder was inflammed and doing a cystoscopy and distension (sp?). Now I have pain symptoms; I have wondered if they are psychosematic..... no, the pain is real. I did wonder if the surgery caused my first flare. I have to believe it did.

[ICLori]

Poll is closed - but I developed IC about 2 years after laproscopic surgery for endometriosis.

Blessings, Lori

[Katrina]

My IC first symptoms were after a surgery that took part of my small intestines and created a pouch to replace my colon. It was my 3rd serious abdominal surgery. Since than other surgeries also made me worse. My hysterectomy was quite hard on me. Many have had their first symptoms after a child birth...with I think is similarly stressful to our bladders for some of us.

[Portia17]

My symptoms started 2 months after my gallbladder was removed

[Amyinagony]

My IC started well before my hysterectomy. I had a hysterectomy for the wrong reason. I was misdiagnosed with GYN issues. I continued to have CCP after my hyster. The pathology report showed my uterus to be perfectly normal. I was diagnosed with IC 5yrs after my hyster. :headbang:

[VickiB]

Amy, that's awful! It seems quite common for the medical community to think 'uterus' when IC symptoms are the complaint. Maybe it's a Freudian thing. My GP sent me to a GYN first for my IC symptoms, even though I insisted the problem was with my bladder.

I've had no surgery or other medical problems prior to developing IC.

Vicki

[Gegatso]

Its not on the poll so I cannot answer, but the doctors are still trying to figure out if my symptoms were caused from hernia surgery where my ilioinguinal nerve was damaged. I have had problems with my incision since the surgery and actually thought it to blame way back when for a lot of problems.

[fireflicker285]

I was struck suddenly and severly with IC after having bladder stones/kidney stones lodged in my bladder. Before that I was fine....or so I thought.

That was 11 years ago now. I have not had them back but I sure do have a bad case of IC.

[Babs RN]

I was diagnosed after suffering for many years with Stage 4 endo, and had an abdominal hyst. I began having kidney stones in December of that same year, had 2 of them blasted, and still had pain. I'm wondering if it was IC all along.

Hugs,
Barb

[jrowley]

My Ic just showed up no surgery involved

[mlb]

IC came 8 months after vaginal hysterectomy.

[BittersweetRain]

Ok well this is depressing. My abdominal hysterectomy is scheduled for this May.

[patricia1]

My IC started after having an emergency C-sect. The C-sect was scheduled but when I was given the epidural they hit the wrong spot and the amount of medicine they gave me was supposed to numb my toes, temp paralized me from the neck down so they had to hurry up and get my son out. This was also the first time I had a cath put in. 6 weeks after this my symptoms first started. But like Amy we thought for the longest time it was female problems and I also had a vaginal hysterectomy that now we know was not needed.

[trytosmile]

I was in a serious car accident in Augs 28, 1987, 10:10 PM. A day I will never forget, well I do but...lol. It resulted in alot of injuries, fractured left ankle, damage too right knee (I've had 4 surgurys on it), hernia's in groin area, broken right wrist, whiplash in neck, dislocated right shoulder, stripped muscles in neck, alot of bruising and stitches everywhere, I'm sure I've forgotten something. Lucky to be alive today. I was off work for 6 months. Today I have alot of muscular problems in my back, shoulders and neck. Not to mention a very weak knee.

My urologist's believes that my IC could be a result of the trauma to the groin area. I had surgury to repair a single hernia in the left groin and a double hernia in the right groin. He believes that the IC laid dormat for years and then "hello". Although nothing can be proven it is his thoughts.

[mayray518]

Thats why the disease is so hard to figure out, no one knows what started it. I have never had any accidents, surgeries, pregnancies or gynecological problems. The only thing that comes to mind is that I started peri menopause the same time I got IC. I had only had one bladder infection so that didnt even mesh. I wish they could come up with a common thread.

[mary124]

My started way back in 1989, before I had my hysterectomy. afterwards I came out of remission and since then it has been down hill ever since.

[kiffy313]

I just found this, know poll is closed, but I was diagnosed after 11 surgeries for kidney stones. I have had 14 stones so far in the last 17 years. I passed 3 on my own. By surgery, I mean the Uro. dilated the urethra and went up either to pull the stone out, or laser it so I could pass the granules. All of my stones have been on the right side, and were lodged in my right ureter, so I could not have the lithotripsy procedure...My Mom and I also remember I had some kind of surgery when I was 4, she thinks it was to remove excess tissue/scar tissue from the end of my urethra. Ironically now the Dr.'s have told me the end of my urethra is very scarred...so, I don't know, I just know I have had pain, frequency, etc. for as long as I can remember, not constant, but there.
Kif

[Gegatso]

As long as we're talking about surgical stuff...if anyone is having pain at the site of the incision, you might want to try magnet therapy for a very fast and cheap remedy. Now, magnets from the fridge will not work, but if you have a scar that you can get to, you might want to look at the 12,000 gauss (very strong) magnets available at http://www.bmi-magnetics.com/shell_neo_magnets.htm
I have no idea if these can help directly with bladder pain, but they do help my surgical scar as well as a lower back problem I have had since 97.
It's just another option and really is NOT quackery.

My 2 cents.

[icnmgrjill]

FYI - On the magnets. Several years ago, I had someone approach me to promote magnets to treat IC pain. I asked him for just one research study that showed that it could help me. His answer was hysterical. He said that the Japanese manufacturers for the magnets would not release their research data to an American audience and that we were to trust them. I said "no thank you."

Gegatso... I appreciate your experience but, as a whole, I think magnets for IC could be a giant waste of money... and don't forget that patients with interstim or any type of implant/pacemaker can't get near them!

Jill :)

[Gegatso]

Here are four research studies on it in case you're interested:

[1] C. Vallbona, C.F. Hazlewood, G. Jurida, Response of Pain to Static Magnetic Fields in Postpolio Patients: A Double-Blind Pilot Study. Arch Phys Med Rehabil 1997; 78: 1200-3.

[2] Dr. Jens Martin, Double Blind Study of the Therapeutic Effectiveness of Permanently Magnetized Foils on Secondary Myotendofasciopathies (Back and Shoulder Pain) at Different Selected Locations. Thomas Laser, MD, Head Physician of the Orthopaedic Department, Orthopaedic-Chirotherapy and Social Medicine Practioner, Klinic Bavaria, 8351 Schaufling.

[3] Larry Seaman, D.P.M., A Double-Blind Study Demonstrating Therapeutic Benefit in Heel Pain Symptomology. Barry University, School of Podiatric Medicine, Miami, Florida.

[4] Horst M. Baermann, M.Sc., The Influence of Multipolar Static Magnetic Fields on the Electrolytic System of the Living Organism with Special Reference to Circular and Radial Pole Patterns, Rheinmagnet, GmbH, D-5206 Neunkirchen -1, Germany

[Amyinagony]

To BittersweetRain,
It can be totally depressing if you have this kind of surgery for the wrong reason, as this happened to me. Make sure there is significant evidence of a GYN origin for your situation. Example: Fibros, uterine tumors found on Ultra sound/CT, etal...and not for CCP (with no proof of being GYN) which very well could be your bladder/IC (the bladder sits in front of the uterus and which makes it possible to get misdiagnosed as a GYN issue). Please be careful and Good luck, I would love to know how you make out.
Please take care.

[patricia1]

Amy same thing happened to me. I had a hysterectomy in 1999 thinking that my pelvic pain and problems where coming from that. In reality it was IC was diagnosed 2 yrs later. I always felt as though IC caused my to lose a body part I really did not need to lose.

[Portia17]

Thank god for my gyno. He could not find nothing wrong. He said I will not give you a hysterectomy until the urologist sees if he can find something wrong. He did it was i.c.

[Amyinagony]

Patricia....
Pretty sad, isn't it?? I am so sorry that this has happened to you too. My heart goes out to you. It has totally and definitly altered my life. Something that I have to try to learn to live with....and it isn't easy. Hopefully with further research and awareness...this won't happen to more women.
Take care.

[BittersweetRain]

Thank you, Amy and Patricia. I'm not having the hyster due to ic pain. I have had adenomyosis with hellacious periods for years. My uterus is the size of a 12 week pregnancy which makes me wonder if that is contributing to the ic. I have also had several abnormal paps. Time for that bad girl to go. I am hoping it won't make my ic worse. I have been on elmiron for two and a half months and feel like I'm already starting to get some relief from the burning. Hopefully it will keep things in check.

[christinaw]

Hi-I had my hysterectomy and total ovary removal in December 04-for endometriosis, dysmenorhea, fibroid tumors, endometrial tumors, dysplasia. In July 04 I had lap. surgery w/ tubal ligation, endometrial ablation, uterine balloon therapy and removal of pelvic adhesions, etc. etc. etc.-both procedures added trauma to my bladder. Bladder pain was significantly worse - major bladder spasms after both procedures. After hysterectomy pelvic pain persisted and then is when my ob/gyn did referral to urologist who dx with IC in January. Be prepared for bladder increased trauma due to hysterectomy. Especially if endo is in / on your bladder as mine was. Drink plenty of water and hopefully since you're already dx with IC your urologist can help with pyridium and pain meds and Elmiron. I didn't get proper help until later.
Take good care and good luck w/ surgery. Hyst. WILL help pelvic pain due to other female problems, but your IC symptoms will appear even more pronounced since that will be just about only pain left (I HOPE!)
Prayers are with you!
cjw

[patricia1]

Bittersweet - for those reason you should go ahead with your surgery. Thats a for sure reason to have it done. I just know some women have had it done and did need for it to be done. I was one. Like Christina said be prepared for increase bladder pain due to the trauma from the hysterectomy. Are you doing it vaginal or abdominal? I had mine vaginal - they say its easier this way with the down time and everything. Altough I did have some bad pain with my hystectomy for a while. I had alot of lower back pain. My gyno said maybe it came from the postion I was in for them to do the procedure.

[BittersweetRain]

Patricia,

I get to do it the hard way. TAH with a vertical incision. Lucky me, huh? Christina, as far as bladder spasms go, I remember those well following my c sections - yikes. Oh well, they have good pain meds.

[Amyinagony]

BittersweetRain,
Glad to hear that this isn't due to bladder pain or for an otherwise unknown reason. (I fear this the most for others because of what I went through) Sorry that you have to go through it though. Wishing you a quick recovery. Please let us know how you make out. Lots of hugs to you :grouphug:

[pharmrep65]

Found the poll late, but wanted to post my story. I am in the process of ruling out IC (I hope). I have not had any abdominal surgeries. Did have a colonoscopy in April 2003, but I was already having problems with urgency/frequency.

[patweb]

I to became diagnosed with IC after 2 laps and a total Hystorectomy. Sometimes I think that it was IC all along instead of the other things i and my husband were told. This is my second marriage and I would have wanted to have a child with my husband, but such is life instead I have a beautiful Lhasa. That I know some people will think is crazy but any of you who have any pets will know that they become your children very easily.

[mayray518]

surprised that never had a surgery is low on the chart. I had never had one before IC. Guess that is why this disease is so confusing.

[mightylittlemom]

Been a while since I have been here. can we re-open the polls?

Mine started after a c-section/rupture.

[SaraJ]

Multiple surgeries and getting worse with each one... Lap x 3... Hyst... BSO for chronic cysts... Blader augmentation for strangulation of bladder by adhesions... will need another one of those soon... Bladder has turned into a rock again!

[bkdom5]

hysterectomy and bladder suspension here.............

[JenG]

My IC kicked in full blast after my hysterectomy (following two prior c-sections). Now I find out I have a hernia at the site of my 3 abdominal surgeries - so guess what?? Another abdominal surgery!!:headbang:

I have had my IC somewhat under control lately, I sooo hope this does not make things worse again!

[MsSmiley]

I've always had pelvic pain but I always just blew it off until I had a kidney stone surgically removed b/c of it stuck in my uretha from it being swollen shut. After that I started having excruciating pain & that's when I found out after many misdiagnoses I have IC

[Mel53H]

I started having symptoms of IC after a vaginal hysterectomy due to a prolapsed uterus.

[jjt001]

I had very minor symptoms (urinary discomfort if I wasn't hydrated enough) until my c-section three years ago (three years yesterday, to be exact, my baby boy is 3!). Then my IC really seemed to kick in.

[sacausa]

My IC started when I was 15, no surgeries other than a tonsilectomy :) and wisdom teeth removal which I think is pretty far from the bladder!

However, I think that the cystoscopy with hydrodistention WORSENED my IC

[glassd18]

I think I had mild IC develop after Cryotherapy and Colposcopy when I was 17.I'm 41 now and five months ago my IC really kicked in.

[vivig14]

I never had known pain before like after my cystoscopy and hydro, which i went under due to primary symptoms of urgency and freqency. Although my uro was advanced for the time and never told me i was crazy, etc, he never heard of having such extreme pain after the cysto and hydro, and they didn't know what to do with me. Looking back on it (this was in '97), i should have been offered some serious pain medication. I remember calling the nurse crying b/c i was in so much pain, and could barely function. Because of this traumatic experience, i avoided most uro related MDs for years, and dealt with my symptoms via diet which helped. this caused me to ignore some of the insidious PFD that came up until I had some more than notable pain from that years later.

[sherry6]

Mine started after a horrific, abnormal vaginal birth. I know how horrible it was, because I have had three normal ones. Since then I have had laporoscopies for endo, ovarian cysts, and adhesians. (3 laps) After my last surgery, the pain got worse instead of going away, and that is when my doc thought that the pain might be from my bladder. This is something I would never guess. I am lucky to have a OBGYN who is familiar with IC.

I am pretty sure my surgeries made my IC worse. My "lady problems" also reinforce my theory that hormones are to blame for all of this nonsense. When I went into remission with this last pregnancy, that reinforced it even more.

[Texas Baby]

I was diagnosed after a hysterctomey and Gallbladder removal. Although symptoms strted way befoore thet were really excerbated after these surgeries
litteva

[noukie]

I started having symptoms after bladder surgery.
Noukie

[DONNAW]

I AM A FIRM BELIEVER THAT IC IS MADE WORSE BY SURGICAL PROCEDURES. I REFUSE TO HAVE ANY FORM OF SURGERY NOW THAT IS ANY WHERE NEAR MY BLADDER. I AM LEARNING TO LIVE WITH THIS DISEASE AND ALL THE MISERY AND PAIN THAT COME WITH IT. GOD WILLING I WILL SOMEDAY BE COMPLETELY PAIN FREE AND LIVING A NORMAL LIFE AGAIN..
DONNA:flower:

[Bethrlk]

I was diagnosed after a rectocele and cystocele repair (following the birth of my third and LAST child!)

[glassd18]

I AM A FIRM BELIEVER THAT IC IS MADE WORSE BY SURGICAL PROCEDURES. I REFUSE TO HAVE ANY FORM OF SURGERY NOW THAT IS ANY WHERE NEAR MY BLADDER. I AM LEARNING TO LIVE WITH THIS DISEASE AND ALL THE MISERY AND PAIN THAT COME WITH IT. GOD WILLING I WILL SOMEDAY BE COMPLETELY PAIN FREE AND LIVING A NORMAL LIFE AGAIN..
DONNA:flower:


Amen to that!! What's up with this IC thing?

[graceimnot2096]

Sorry I missed the poll!!!!!!
I have had most of those surgeries atleast once if not more!!!!!!!!!

[Emma's Mommy]

i got IC after a c-section

[sunshinegurl]

I Noticed My Symptoms Of Ic A Few Months After My Gallbladder Surgery....it Started Out As A Uninary Infections The I Could'nt Empty My Bladder Fully Then Because Of That My Doctor Had To Do A Ureathal Dialtion To Help Me Empty Bladder . Which The Symptoms Returned And Worse Now I Have Urethal Burning. And When I Eat Certain Things It Feels Like My Uretha Is On Fire....i Sure Hope This Info Helps Someone.

[psh37]

I had multiple knee surgery in 1980 have had IC ever since. Didn't get a dx until late 80s. Diet helps the most. I refuse to take mind altering drugs and elmiron/DMSO did not work.

[Tracey5399]

IC happened for me right after i miscarried and had the DNC.

[mayray518]

I had never had a surgery when I got IC in 1992 at the age of 36. And not all IC drugs are mind altering. Elavil literally saved my life; at higher doses it made me tired but I now take 5 mg, have no side effects and have been symptom free for 7 years.

[sunshinegurl]

i will not take the cysto/hydro test to rule out IC but my my obgyn doctor tells me i have hte classic symptoms of IC. and give me a perscripton of elirom..i haven't taken them yet...so some doctors treat you by the symptoms....if i knew elivil would help me i would give them a try ...my uro said it works on the part of the brain to relax the bladder....i already take a low dose of xanax..after all the post ive read id say most of the poplulation has IC ..may be so mild it causes no out of the way problems....and does anyone notice a increase of symptoms during ovulation?......thats when i have more burning and cant empty bladder at times .....:confused:

[mayray518]

I took elmiron for 9 months and it did not help me but it does help some people. It took 3 months at 50 mg for the elavil to work for me and it worked a miracle. As I stated, it did make me tired. I weaned myself down to 25 after about a year and then 10 and now I take 5. I have been symptom free for 7 years. I had normal capacity but had severe urgency and petechial hemorrhages. I also tried the diet and DMSO, which worked for awhile.

[Joanne169]

My IC came 3 weeks after my hysterectomy.

[DONNAW]

So Did Mine. I Have Neer Been The Same. It Has Been A Constant Battle.