Ive had people ask me questions over the years about why I have to go to the bathroom so much. This will explain one aspect of this which I hope may help some other people as well. To understand the full person, you must understand where they have come from.
When I was a teen I constantly had bladder issues, which the doctors didn't really understand. I always felt pain and even though I drank tons of water and ran cross country this pain was always there. When I moved down to VA at the ripe age of 18 the pain was getting so bad I went to the ER several times. It was beyond the ER doctors comprehension. I kept having blood in my urine and so they would prescribe me antibiotics thinking I had bladder infection/ kidney infection. As the months passed frequent trips to ER, I finally found a new gyn to listen to me. The other ones told me to "go home and take Tylenol". Thanks doc.
I knew there was something wrong, no one else I knew had the pain, frequency constantly, if I had a drink I was peeing knives, and had to go to the bathroom sometimes 5 minutes after just going because urine in my bladder hurt so bad. At the same time I had severe pelvic pain which was thought to be related. I knew that my issues were far from normal. The normal woman didn't have the debilitating pain, severe bleeding, etc that I had. It was getting worse. I was constantly embarrassed, working was hard waiting tables when you need to go to the bathroom so often. School during my teen years and then college was hard because teachers don't want to let you out of class when you just were out of class. I knew something had to give because I needed a reason for why and I'm a "how do I fix this" person so I was on a mission to fix this and get over it.
I found a new gyn who listened to me and said he knew what I had. I was not convinced but I was so ready to find out that I would do just about anything. One test which is very rarely used now was the potassium test. He would catheterize me, fill my bladder with saline first then empty it then fill it with potassium. As the potassium started going in I screamed at the top of my lungs and cried. It was one of the most painful things I had ever experienced. He stopped and let me pee, it was straight blood. He said you have interstitial cystitis. I was in horror crying my eyes out. There is no cure for IC just painful bladder treatments, medications, surgeries etc. The only way to test and see if you have this for certain is to do a cystoscopy and biopsy and since I was scheduled for my first of many surgeries because of the endometriosis I also had this on top of other tests. I had no one to take me to surgery when it was scheduled. My fiance and I had broken up and so one of my friends I worked with ended up taking me. He even called my doctor and go me more medications when the meds weren't working. He got me food and helped me when I couldn't walk. He was a good friend. I was in school and a waitress at the time so I was very low on money. The bladder medication cost was outrageous and I also had to start weekly bladder treatments at the age of 18 this was not very fun, in fact they are painful especially when you have bladder ulcers getting anything injected into my bladder was like lemon juice getting poured onto an open wound but I went for months and had it done. I wanted nothing more than to feel better. I was never one to take pain pills so I needed to get myself back I wanted to run again which had become so painful. What I didn't realize was that IC is a condition you have for the rest of your life.
I'm 30 now and have been on this journey for so long I dont remember ever having days without pain. I've had many many surgeries, some to check for bladder cancer which can develop from the constant inflammation and ulcers, and also very invasive surgeries to clean out the endometriosis wrapped around my bowels, ovaries, tubes, peritoneum, adhesions etc, and finally had to have a hysterectomy. Some people notice a temporary improvement in symptoms after undergoing cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water or gas. The procedure may be repeated as a treatment if the response is long lasting, but in my experience its very short lived, painful, and after surgery I end up with catheters for days in hospital and IV antibiotics because of infections. Other surgical options include:
- Fulguration. This invasive method involves insertion of instruments through the urethra to burn off ulcers that may be present with interstitial cystitis.
- Resection. This is invasive method that involves insertion of instruments through the urethra to cut around any ulcers.
- Bladder augmentation. In this procedure, surgeons remove the damaged portion of the bladder and replace it with a piece of the colon, but the pain still remains and some people need to empty their bladders with a catheter many times a day.
I was told I wouldn't be able to have kids because I had such bad endometriosis stage 4 at the age of 18 it was everywhere all over my bladder etc as I mentioned the worst the dr had seen at my age. I had been also told that earlier on in my life as well when a Pediatric dr had seen me at Childrens hospital in Philly because at 14 I was diagnosed with several things, and Raynauds and unspecified arthritis, but I brushed it aside because essentially raising my siblings, neighbors kids, some cousins... made me want to concentrate on school and my nursing degree, kids were not on my mind, God has a funny sense of humor... This is a short condensed version of my journey to my interstitial cystitis diagnosis.
Since 2004 I have been on Elmiron except when I was pregnant (the journey of my pregnancies very complicated will do later). Its now deemed safe during pregnancy but during the times I was pregnant no Dr would give it to me and I suffered in intense pain on top of life threatening conditions. Sometimes people go into remission during pregnancy with autoimmune conditions, I wasn't that lucky. Through the years I've battled many things and this is still one of them. Getting up every half hour at night sometimes more and not sleeping. When going out or on car rides I have to know where there are bathrooms and when most can sit through a movie I have to get up 2+ times at least to go to the bathroom. I'm not as embarrassed as I was when I was first diagnosed, but this condition has still proven to be a difficult journey. This alone is a very hard condition to have and the people I know who have this fight daily hard but then I got diagnosed with life threatening battles on top of everything else I have,but this was the start of the list....the autoimmune damage would add on as the years have passed. Currently, Im still on Elmiron and have had to re start twice a week catheter treatments for my bladder which is very painful, on top of IV treatments I get for other battles Im facing. Ive also been battling ongoing kidney infections on top of the IC which aggravates the IC worse as you can imagine. The inflammatory response kicks up my other autoimmune conditions and complications along with the genectic immune defiency that has made me septic several times.
If you have or know someone who suffers with this help them figure out good treatment, without elmiron I would be in a lot more pain and have a lot more ulcers. Following the IC diet is also key for low inflammatory foods. Until your bladder starts to heal especially stay away from juice, soda, tea, etc. Find a uro/gyn that is knowledgeable about this condition. IC can also be coupled with some other conditions which are not fun that made my list as well. To find good treatment make sure you research. Some people take prelief on top of the Elmiron. One of the side effects of Elmiron is hair loss but God knows I can deal with that if I'm in less pain. Also a side note when I got diagnosed with Celiac in 2011 (after suffering years on end= for another time) going gluten free decreased my pain and for a period of time my IC was somewhat in remission. It was short lived but during that time I was very thankful to have days of less pain. Make sure to do food journals and drink journals to help you find out what your triggers are and don't stop till you find a Dr who will listen to you.
http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439
