• Posted by Cathy
  • 16 Aug 2010

Scars, scars, and even more scars. Some scars tell me where I’ve been. Those scars are painful yet they are also a comfort to me as well. I’ve known what happened with those scars, and the pain I endured while those scars were fresh. Those scars tell my story up to this point; they say where I’ve been and what my life and IC was like then. Now I have new and fresh scars. Scars from my neobladder, BIG scars, the biggest scars I’ve ever had. I have one that is 7 inches long, which creates a new me, and the other is 3 inches long, and that is there to cover up what had been and where I have been for the past 2 years.

These are the scary scars. The ones that come with doubt, fear and uncertainty. Will I stay at a low pain level? Or will my IC shadow come back with a vengeance? Was this surgery a mistake, and will it make things worse then what they were before? There is the possibility that I will get worse. But so far I’m feeling good my, my quality of life has already improved tremendously so that is telling me I didn’t make a mistake in deciding to have this surgery

So where will these scars of uncertainty bring me? There are only 2 ways it could go, good or bad. So we’ll see how it goes from here.

Written 1 month after neobladder surgery

 
  • Posted by christinapannell
  • 10 Feb 2010

Hi to all with this horrible IC. My name is Christina. I am sharing my story about my struggle with my IC and health life. All through my life I have had medical issues. When I was born in January 1980, I had Beta Strep (Strep B). The strep got into my bloodstream and I was hours from death when it was found. I was on massive antibiotics to keep me alive. Thanks to the Lord I am alive now. When I was approximately 12 years of age, I started having ovarian cysts. These cysts were the beginning of my medical problems that would follow. As well as ovarian cysts I also had horrible menstrual cycles and lots of pain. At this point, still not sure why I was hurting all the time or what was going on with me. January 13, 2006 I had my first surgery. This surgery was a laproscopic surgery and a DNC. After this surgery I was diagnosed with Endometriois, (As we all know IC and Endo can run together). Also I had an ovarian cyst the size of a grapefruit. There was a period of 8 to 10 weeks that I felt much better, felt like I was normal to an extent again.  The pain returned by middle of March. In April 2006 I was back at the gynecologist again. After an exam it was determined that my endometriosis had gotten worse in 5 months then it had in the 2 years before. I was scheduled for testing and went back to the Dr. in June 2006. This is one of the days that changed my life, I was told that I would be having a complete hysterectomy. August 11,2006 the hysterectomy took place. By mid October I was back at the gynecologist afraid that something went wrong with the hysterectomy. I couldn’t stand without hurting, sit, or even lie on the bed without being in agony. When I went to the Dr. he then tells me that it is my bladder. I went to a urologist that I will call Uro #1. He did a urine specimen and said that there was no infection so therefore he didn’t know what could be causing this pain. I did have a hard time with the result of the first uro appt. so I suffered with pain for about 6 months. The pain slowly getting out of control I had to find out what was going on with my body. I went to Uro #2, he was not real sure what was going on with my body but really wanted to find out what was causing pain. My first bladder procedure took place on June 26, 2007. This procedure consisted of Trigone Cauterization, Cystoscopy, Hydro distention, and a Urethral Dilation. After the procedures I was diagnosed with severe trigonitis (after researched this is mistaken for Interstitial Cystitis). The next procedure was a Prefyx Urethra Sling Suspension on August 14, 2007. My Urethroscopy revealed that my urethra is tight around a 17 font scope. After all treatment options and no relief the uro wasn’t real sure what to do anymore. Therefore I found another Urologist, This one will be called Uro #3. This Uro did an in office cystoscopy and it was very painful for me, he then suspects IC and sends me to an IC specialist. This IC specialist will be called Uro #4.  On the first appointment for Uro #4, they did some testing on me. The test consisted on Catheterizing me( I might add very painful) to empty my bladder, fill it back up, me telling them when I felt something going on in my bladder, and watching it empty. This test did not come back normal (don’t have the exact results). When I see the Uro after the testing he prescribes me meds to try to help with the incontinence. This next part does not make any sense at all,  When the bladder control meds did not work, he then says  I am just fat and needs to lose some weight and then I will feel better. Grr very upsetting words.  Well after that I found myself again another Urologist. This one is Uro #5. As of July 23,2008 I had my first appointment with him and right off he knew that it was Interstitial Cystitis just by going by my records.  August 6,2008 this uro also did an in office cystoscopy  and his assessments were confirmed. He put me on meds and the IC diet and I went home not knowing real for sure what was going on with my body, scared to death at this point, I had never heard of IC at all until this day. August 11,2008 I went in for a cystoscopy and Hydro distention. As of August 8,2008 I was having horrible pain. There was blood traces found in my urine on this day as well but no infections.  November 19,2008 we started the instillation’s that consisted of Elmiron. After 4 weeks of instillation’s trying to help with the IC and no relief Uro #5 admits that he got in over his head. I was sent to another IC specialist which is classified as Uro #6. She is a good urologist but not real for sure what to try because of so many failed treatment options.  I see Uro #6 about once every 3 to 6 months, unless having problems and then I see her sooner. I had a Urinary Tract Infection in October 2009. I was given bactrim to help with the infection.  She did try me on something light for pain but that did not help so therefore I was sent to pain management. I am also seeing a specialist for my Pelvic Floor Dysfunction. I am doing trigger point therapy (which is hard on me because of pain). The pressure points on some days can give me some relief for about 2 hours at the most. I have went from a 9 to a 7 or 8 so I am thankful for the help that I do get. My pain Dr has tried many treatment options including an epidural. My pain had become less while the epidural was in effect. Within fifteen minutes of leaving the hospital the pain was already coming back into effect. Even on the  medications I am on right now I am still at a pain scale of 7 to 10. My pain management Dr. also diagnosed me with Vulvodynia. I actually seen my Pain Management Dr as of February 10,2010 and was given another med on top of everything else I am taking. If this fails I will be having another procedure done in March. Interstitial Cystitis has drastically changed my life in many ways. I used to be an outgoing person and very happy person.  I used to love going places and just being outside a lot of the time. Now I stay close to the bathroom, I have horrible incontinence, and severe self esteem issues. Also before IC I was much smaller but because of the pain and etc, that I go thru I don’t have the energy to do much else. I thank you reading my story, I really don’t know where I would be without the support of my wonderful family and my Best Friend Cathy. She is truly a Godsend. I will keep everything updated as new things and treatment options  progress.  Thank you.

 
  • Posted by MS.T
  • 05 Feb 2010

Well let me move on to the next surgery. With so many issues with me not being able to urinate they thought something needed to be done. So I was put into the hospital where they tried the stretching again but this time they put in some medication that was suppose to help it stay stretched. They did nothing but cause me a whole lot of pain. At this point I was tired and I told them that they were not gonna do another surgery. I have to say for the first maybe 3 years the pain was manageable. I was still able to enjoy my life. I was working and partying like always. Then I got a pap smear and it came back that I had some cancerous cells. So here I went again..with the surgeries. I had to have my cervix scrapped and frozen. I have to say having your cervix frozen is the weirdest thing I have every felt. I could feel it melting all day and night. Just imagine someone putting ice in your vagina and you are walking around while it melts. That is a real crazy feeling! LOL!! Thank God they were able to get it all no chemo or anything like that. For that I am more than grateful. They thought that I had endometriosis. That seems to run hand in hand with IC which is rare but I know a lot of people have both. Go figure. MY IC started to flare up again after I had an upper and lower GI for my ulcers. This is when the pain started to interfere with my daily life. At this time I had no insurance so I was going through the medication companies to try to get help with paying for the meds. At this time I was on Elmiron, Macrobid & codeine. The pain meds were not easy to get though. I moved to Texas and I was doing great for the first couple of months. I got an infection out of this world and they couldn’t find the right antibiotics so this started a flare. I started seeing a new urologist so you know that meant going through so of the same procedures all over again. I had the stretching and polyps surgery again (Hydrodistension). I was still have problems with urinating and it began to vary some days I couldn’t go and others I couldn’t stop. They asked me to keep a diary of the times I urinated and I had to measure the amount that was coming out. I did this for a month so they could see what was happening. The doc said that when I urinated I was not emptying out my bladder fully. The next surgery he tried to do something to where the hole from the badder to the urethra would get bigger. I can’t tell you what that was called because I don’t recall. When this didn’t work he had me to start using the catheter 4 times a day. I hated this but I wanted to feel better. During this time I got a pain management doctor who first prescribed me Loratab. I have to be honest when the drugs became more powerful I got scared so I wasn’t taking them. I didn’t want to become an addict. I would see him once a month and he was beginning to wonder why my pain was getting worse every visit. One day he asked if I was taking the medication as he prescribed it and I said no and he had a fit!! I had to explain to him why I wasn’t taking it and he understood. He gave me a good tongue lashing and I started taking the meds. They kept having to change my medication because it wasn’t working. My urologist finally decided to tell me that I was the worst IC patient he has ever seen. He has been a urologist longer than I have been living, that wasn’t good too hear. He was honest and I asked to always be that way. The next step was these DMSO treatments. These things are horrible. You lay on your back they put in a catheter and then they push in the DMSO medication. You lay on your back, and both sides for 10 minutes each. You have to keep this liquid in for 30 mins. I can barely hold my urine that long. You do these treatments for 4 weeks once a week. The medication burns the inside your bladder and when you urinate it out. For me, my bladder burned the entire time the treatments were going on. I have this done at least 5 times or more and it didn’t work. The DMSO medication is suppose to help re-coat you bladder walls. It didn’t change mine. It also is suppose take care of the inflammation you are having in your bladder. That didn’t work for me in that way either. I was tired by this time. You know you get tired of being poked and prodded by doctors. Well it’s 3:30 am I need to try to get some sleep. I will finish real soon.

 
  • Posted by MS.T
  • 03 Feb 2010

I am a 33 year old female. I have been living with IC for over 10 years now. I have to say it has been a long haul and I am still pressing on. I have more bad days then good but you know I won’t complain. I have had a lot of surgeries. My first on was when they went in to see how far I had progressed. The next surgery was when they scrapped out all of the polyps out of my bladder. I can honestly say this was one of the worst surgeries I ever had. I was hooked up to a morphine drip afterward and that didn’t help. Can you imagine having urine in your bladder after the have gone in and scrapped everything out. All I wanted to do was scream but I was in a hospital. They put in a foley for at least a week. I was just suffering. I didn’t want to be touched at all. The next surgery was to try to stretch out my bladder so it could hold more urine. That surgery did not work. I was stuck with a foley for another week. I was told that I have a very small bladder. My bladder does not hold as much urine as a normal person’s would. That makes having IC even worse because it already makes you go a lot so I go more than a normal person with IC. Man life is grand. I was put on meds after the first surgery. My medication was not strong then. I don’t recall being on pain meds then just antibiotics and  Prosed or Pyridium. Why can’t they find something that won’t change your urine and underwear colors. Lol I just thought I would add that. Things started to go down hill for me when I could not urinate. I would have to go to the emergency room because you can’t have urine in your body for over a certain amount of hours and I would be pass that. The ER would only catheterize (probably spelled wrong I’m not good at that meds make me trip) me. So when it got worse I had to learn to use a catheter in myself. I have to say I hated that. It hurts so bad going in and I don’t care how much I do it I still tense up. Tensing up only makes it worse. You get it over with and when you can finally urinate on your own it burns like hell. I mean come on why aren’t catheters made of some sort of soft material so it won’t do that. I still use catheters now over 10 years later. I’m a lil tired I will be back later if you have any questions or comments feel free to do so.

 
  • Posted by tuckersmimi
  • 27 Jan 2010

I had a hysterectomy about 4 yrs ago because of a cystocele. Everything went fine after my recovery time.  After a couple of yrs I started going to the bathroom a lot more, having infections, and basically was so tired i did not even want to get up of the mornings. I did not want to think about  something going wrong so i put it out of my mind until last Christmas when we made a trip to Iowa to pick up our grandson and before I got there I could not go to the bathroom. After many trips of sitting in a hot tub I finally got things to working and when I got home I made an appointment with uro, after several trips and some testing he confirmed I had ic and pfd. I had never heard of ic so I stopped on the way home to pick up a handbook which told me just about everything I wanted to know. During this month I was also diagnosed as having fibromyalgia, rheumatoid arthritis in hands, and in knees and lower back, all of this explained a lot but I was scared, mad, depressed,then back to mad again. For the next few months I could probably count on one hand the times I was out of pajamas and recliner! My heating pad and bathtub were my new best friends! I really don’t know why everything hit me at one time but it really changed my life and not for the better. The pressure and pain got continuously worse until Aug of 09 I had to have bladder support surgery again. Uro told me it was nothing that I had done he suspected it was the ic to blame, anything out of the ordinary throws my bladder into a fit so needless to say after this surgery it was  a month before I could actually go to bathroom like a normal person. Things have been fairly decent until now and the spasms and pain has started again. Uro told me at last checkup I could do no more lifting, or straining of any shape form or fashion, he said it would be the repetitious daily things that would get me into trouble so that meant no more keeping grandchildren…I cried all day.  It has been 5 months since surgery and if I am on my feet all day long I feel like everything is going south again. I am lucky in the fact I do have someone to help with the housework and my mom helps me daily.  It is so frustrating because I WANT MY LIFE BACK!  At a time when I should be enjoying myself I have to deal w/pain every day. I do worry what the future holds for me, I realize it could be a lot worse and I am thankful that I am not in as much pain as a lot of people I have talked to. I try and watch what I eat and I have found a few foods that really set things off. I have only had to have 2 instills  but I think I will probably have to start them again, I take trammadol/Tylenol 3x a day plus methocarbamol 3x a day, so far it kinda keeps things under control but I still have a lot of spasms especially at night. I really hate being so negative but I’m still kind of a newbie to all this, you see I have always been a take control, get things done person…and that is not happening anymore.

 
  • Posted by Cathy
  • 19 Aug 2009

Well, we’re at almost 2000 visitors. When I started this site, never in a million years would I have dreamed I would have reached that many people. I knew some, but not this many. I am overjoyed that I have been able to at least get some information out to people about IC. It’s amazing and I am so happy! Well, now that I’m done telling you the good news, here comes some bad, well, bad for me. I had another cystoscopy on July 17th, it showed that the pinpoint hemorrhages have decreased, how much I don’t know, I’m seeing the doctor soon and I want to see the picture to see how much. That is the good news, my bladder has shrunk, which is typical of IC bladders. But they found out that my vaginal walls are very thin. That could be causing a lot of the problems. I need to do some research about that and then I’ll post it on here. I’ve been on medication to have me not have my periods for 4 years now, and that could be the reason, not enough estrogen. So I go to see my gyno on the 1st so I’ll get some answers then. Which is good because I see my uro on the 2nd so I’ll be able to give him some answers about what my gyno says and if he’s going to change anything in my pill regiment. So, hopefully I’ll get some answers and then I’ll be able to hopefully have the pain subsided some. I’ve started on Lyrica, which has given me some pain relief, I’ve been able to start really walking and exercising and doing more. The only bad thing is that the was that my hands and feet and face were swelling. I tried to get an over the counter water pill, but that didn’t help. So then I got a prescription waterpill, and I can finally see my ankles again! LOL! So things are going really well around here, and no bad news yet, there’s still some pain, but I’m more at about a pain 6-7 everyday now. So you can’t complain to much about that now can you!