IC

My Life with Interstitial Cystitis

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bladder pain interstitial cystitis

This silent disease can not only take over someone’s body, but can also crumble their world. Interstitial cystitis (IC) is mainly a women’s disease, but there are some men who do get this as well. I am one of them, and this is my story.

Let me tell you who I am.  I am a military vet of 8 years in service, and I have also served my home county, the Winston County, Alabama Sheriff’s office, and the property appraisal office.  I played many sports in high school and went to 2 years of college.  So I have always been busy and active.  When I was in the Army I was diagnosed with depression, bipolar disorder, anxiety, personality disorder, and also PTSD. I had already had too many issues to work on before even getting IC.

I was diagnosed with interstitial cystitis in November of 2015. At that time, I had no idea what I was in for. When I first started getting bladder pain, the doctors thought I was getting urinary tract infections, so I was given several rounds of antibiotics. Those did not work and I continued to have pain. I finally had a cystoscopy, and four tumors were found in addition to the interstitial cystitis.  I had surgery for the tumors, which ended up being non-cancerous. After the surgery I was just given Tamsulosin (Flo-max) and Tramadol for pain and sent on my way. I also started the IC diet.

At a follow up three months later, when I told the doctors that I was still in pain and still going to the bathroom all the time, they said that was normal for IC , and told me to stick to the diet. It seems like some doctors don’t have a lot of knowledge about this disease. Since then I still hurt and I have even gotten worse. Cutting grass used to be my favorite thing to do, while listening to music and unwinding. Now I can’t even do that.  Even walking is a chore–it starts off as a small pain, and then it escalates into a pain that just shuts me down.  Barbecuing is another former pleasure that has vanished from my life. For one thing, BBQ sauce is a big no-no on the IC diet.  But also standing up for a long period of time causes a sharp pain and a burning sensation that feels like my whole gut is on fire.

My love life is now also gone because the pain of arousal and actual intercourse is so painful it makes my eyes tear up.  I have three boys ages 2, 3 and 10 years old, who love to wrestle and run. Now I can’t play with them—I can only watch from the sidelines. I get very little to no sleep because of the pain and the frequency of getting up all night to go to the bathroom. This disease has zapped me of all my dignity. My self-respect and self-esteem have suffered greatly. Not only is there a huge physical toll, but it has a major toll on you mentally as well.

This disease can affect anyone—it doesn’t matter what gender or race you are, or how young or old you are. It has a huge impact on a person’s world, and on their family and friends. For example, when we travel I always have to know where all the bathroom stops are en route, and we sometimes have to cancel family get-togethers. When I informed my family about what I had, they didn’t know what it was, and they didn’t understand it. They responded with comments like “oh, just walk it off,” or “you will be okay, just keep working at it.” It’s hard to face your family and friends, and pretend that you are okay, when you are not. I was in despair beyond belief, but then I found a support group on Facebook to help me along, and I am very thankful for that.

The only way we can beat this is to accept our situation, support one another, and pick each other up. We also need to communicate how we feel (especially men, who are more prone to hold everything inside) and help others understand what we are going through. All we can do is put one foot in front of the other, and walk hand in hand with each other. I hope that we will one day find a cure for interstitial cystitis.

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This article was published originally on Hormones Matter on April 11, 2016. 

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Finding Relief from Interstitial Cystitis

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Where do I begin? My interstitial cystitis came out of nowhere. I had never had a bladder or kidney infection in my life, and no problems with pain or urinary frequency/urgency. I was in my early thirties when suddenly my symptoms began.

When I started having interstitial cystitis (IC) symptoms, my two children were already in school. One was going into middle school and one was going into high school. I was working as a driver of a school bus. I started feeling urinary urgency so badly one day that I thought I was going to pull my hair out. I would urinate with no relief from the feeling of urgency, going every two to three minutes! I cried, not understanding what was happening to me.

I tried drinking nothing but water and I was relieved when after a few days it seemed to ease. Little did I know that just a week or so later it would come back with a vengeance, even worse than before. I just happened to be in the truck with my husband (he drives a tractor trailer) and we were heading home when it hit. I was incredibly uncomfortable and I remember that day as clearly as any day in my life. I decided I needed to seek medical help.

Getting a Diagnosis

The next morning, I called a urologist and made an appointment. When I finally saw the doctor (crying like a blubbering baby) he examined me and asked if anything big had changed in my life. The only thing that had changed was that I had quit smoking, which I had done since I was 13. He joked and said that maybe I should start smoking again. I was not amused.

He then did some sort of ultrasound, and said that he knew what was wrong with me. I got so excited and thought that now that we knew what was wrong, it could be fixed. However, the doctor explained that it wasn’t going to be simple. I needed to have more tests to confirm, but he thought that I had interstitial cystitis. I had never heard of this disease before. The doctor explained that there was no cure. He said that he would try to help me be more comfortable using whatever treatments he could.

We started with a bladder instillation. This was a cocktail of medications instilled into my bladder through a catheter. This was the first time I had ever been catheterized. I laid on the table , and after a little bit started to feel some relief, but little did I know at the time that it wouldn’t last long.

I had all the tests, and sure enough I had “typical” IC so we begin with a hydrodistention. This procedure helps establish the diagnosis of IC, and sometimes treats the symptoms as well. Fluid is instilled into the bladder through the urethra and the bladder walls are stretched. A small scope with a camera is put into the bladder through the urethra and the bladder walls can be examined for changes that indicate IC.

Trying Different Treatments

After this, I had bladder instillations every day in my urologist’s office. This was difficult because I was still trying to work, and I also had to take care of my family. After a while, the instillations went from every day to three times a week, then down to twice a week. After a couple months of this, I felt like I had no life, and still had terrible pain. I was so miserable and it affected everyone around me. I just wanted to go to sleep and never wake up again. I had no quality of life, nor did my family.

One day, I realized that the instillations were not helping, so I decided not to do them anymore. My doctor agreed and we started different medications. Every one was a process of trial and error, to see what worked. It took us close to a year to get the right medications for me to be able to function so I could continue working, I tried three instillations of DMSO, which didn’t work at all and were terrible. Eventually I ended up taking a lot of different medications: Elmiron (a medication specifically to treat IC),  Detrol LA (for urinary frequency, which I later changed to Myrbetriq), and Pepcid. At bedtime I take Xanax, amitrityline, and Benadryl. I also take Prelief every time I eat. When I am having a flare up I also add Detrol and neurontin.

Giving up Our Dreams of Another Child

During this time, my husband and I were actively trying to conceive, and had been for a few years (my children were with my first husband). After being diagnosed with IC my urologist was adamant that we give up on that altogether, but I wasn’t willing to do that. I did see a gynecologist and after a few months, changed my mind about trying to conceive. I had been having extremely heavy periods and got an infection with each period. I decided to get a NovaSure endometrial ablation, and had my tubes tied. I was very upset afterwards because this took away my husband’s only chance of ever becoming a father, but for my health it was the best decision I ever made. I stopped getting infections and basically have no periods anymore, just very occasional spotting.

Although we were no longer trying to conceive, IC took a terrible toll on our sex life. We had been fairly active–after all, I had been trying to get pregnant and had only been married a few years. But with IC, when I have sex I am in incredible pain afterwards, sometimes for more than a week. How is it that something so natural can cause so much pain! In a way I know I am lucky, because I am ok to have sex, but have the pain afterwards. I know that a lot of people with IC can’t even have sex at all because it is too painful. The only thing that relieves my pain after sex is antibiotics, which is very odd, because I’ve been tested for infections after sex several times and have never had an infection.

This past year. my urologist retired, and it broke my heart. I have tears in my eyes even now as I type this. I loved him for taking such good care of me, especially since I’ve read so many horror stories of others who weren’t believed, and were told it was all in their heads. He was so good when I heard of some new treatment or medication to try. He wouldn’t hesitate to let me try to see if it was something that would help me. Luckily my new urologist seems okay so far. I told him right away that I was very afraid that if I didn’t continue to get proper treatment, I wouldn’t be able to live day to day and function.

Moving Forward

As I write this, I’m sitting here with a trial interstim device. This device, if it works, will be implanted in my lower back and stimulates the nerves that control bowel and bladder function (http://www.ichelp.org/diagnosis-treatment/treatments/neuromodulation/). It can help relieve symptoms of urinary frequency and urgency. I received this on June 23th (my 15th wedding anniversary). I’m playing the waiting game with my bladder to see if this is what comes next for me. If it works, I will get a permanent implant, and I hope that I will be able to reduce some of the medications I am on. If it doesn’t, I will just continue on with the mountain of medications I take daily to live as close to “normally” as I can.

Treating my interstitial cystitis has constantly required me to try new things to see what works for my body. Every new treatment is trial and error, because there is nothing that really works well for all IC patients. I have been lucky so far to have been able to get some control over my IC symptoms, with the help of my doctor. Living with IC is a constant struggle to gain the best quality of life I can have.

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The Trials of Living with Interstitial Cystitis

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Living with interstitial cystitis (IC) is hell.

I started noticing symptoms when I was 13 years old. I kept going to the restroom feeling like my bladder was full, but there would be no urine. This was 1998, and much less was known then about interstitial cystitis than is now. My family doctor had no idea what was going on and referred me to an urologist. That doctor initially thought I had pelvic bones pressing on nerves and suggested chiropractic therapy. That gave me some relief, but symptoms got worse so I returned to the urologist two years later. This time she suspected IC and wanted to perform a cystoscopy. Back then it involved being in an operating room and put under anesthesia. Today they are usually performed in the clinic. The cystoscopy revealed bleeding in my bladder walls, and I was officially diagnosed with interstitial cystitis.

Trying Various Treatments

The first treatment I tried was the oral pill Elmiron, which is specifically supposed to treat IC. I took that for a year with no relief. I then had an Interstim implanted in 2002. This is similar to a pacemaker but is implanted in my low back and hooked up to nerves related to my bladder. It sends electrical pulses to try to override the constant feeling of a full bladder – basically it’s supposed to tell my bladder to shut up. This took the edge off my symptoms for ten years, but it no longer helps and my symptoms have worsened. I have had seven surgeries related to the Interstim, including a battery replacement and wire revisions. I switched to an urogynocologist in 2014 and he performed the last two wire revisions.

I have also tried using Botox to mange my symptoms. A catheter is inserted and Botox is injected with a needle several times directly into the bladder wall. I was given a valium prior to the procedure, but it was still painful and I was in pain for about five hours afterwards. Botox ended up not helping my IC either. My urogyn wanted to try another injection with a higher dose of Botox, but I did not want to go through that pain again and I could not afford it. I have group health insurance with a $3500 out of pocket. Botox injections cost all of that.

I tried acupuncture a few times, but that seemed to make my bladder worse. I went back to trying oral medications. Today I take six medications daily – prescription gabapentin for pain relief, Myrbetriq to decrease the urinary frequency, and hydroxyzine, an antihistamine that can help with bladder pain. I also take over the counter marshmallow root, d-mannose, and Azo bladder control pills. I also have prescription hyophen (a smooth muscle relaxer) for flares. I take a lot of OTC Azo UTI pain relief pills, but not daily. I have taken OTC Kratom pills (a herb), too, that help the pain a bit.

What Interstitial Cystitis Feels Like

I read a meme relating to chronic disease that said “my life consists of tolerable pain and intolerable pain.” I’ve never seen anything more truthful. I have good days and bad days with IC.  On good days, symptoms are always there but they are tolerable.  I have constant urinary urgency that varies in intensity. I have pressure and pain in my urethra and pelvic region. I do not have the option to “be sick” and stay in bed every time I do not feel well, otherwise I would spend 90% of my life in bed. I have to go about normal functions in life while enduring pain that would make most people unable to move. And those are my good days.

A bad day is when my IC flares. Flares are when symptoms go from a 5 to a 10 and pain hits me like a brick. They happen at any time. They vary from lasting a week to two months. They feel like a sharp burning pain as though my bladder and/or urethra is touching an electric fence. Sometimes it feels like my bladder walls have turned to stone or are swollen and putting pressure on my whole pelvic area. Sometimes it feels like my urethra is pinching against itself as tightly as it can. I have things that help calm the flare a bit (bladder instillations where medication is inserted directly into the bladder through a catheter, steroids, baking soda in water, ice packs), but for the most part I just have to ride it out until the pain subsides to a tolerable level. For some reason, the doctors I go to will not prescribe pain medicine for flares. I have considered pretending I hurt my back so that I could get pain meds, because I know I will not get them if I say I have bladder pain due to IC. It pisses me off that people can fake pain and get pain meds, and I have actual pain and I cannot get any pain meds.

Those are my physical symptoms. There are also a lot of mental aspects that come with this disease. IC is very hard to live with because I do not look sick. There are no obvious signs on the outside of my body that anything is wrong (aside from surgical scars). I smile and laugh and have fun, all while inside my bladder is fighting me.  Treating IC is frustrating because symptoms vary widely from patient to patient, so treatment options vary widely as well. I wish it was like a headache where I could take an aspirin and get relief.

On really bad days during a flare when the pain has been unending and I am exhausted and have been crying from pain, thoughts of suicide come to mind. I think that’s a natural reaction. I would never act on those thoughts, but they come because it seems like the only way to get relief from the pain.

Living With Interstitial Cystitis

IC has made me unsympathetic towards people with minor pain. If I see someone with a broken foot who is crying, I do not feel bad for them. A friend had her tonsils removed and was complaining about the severe pain. I did not feel bad for her. I would give anything to have that kind of temporary pain rather than the pain I have to live with on a daily basis.  IC has made me jealous of mothers, because I do not know if I will be able to have children. I do not know how I can raise a child when I do not feel good the majority of the time. I am jealous of women who have vaginal deliveries. That will not be an option for me if I can have children.

My food and drink have limitations. I gave up pop several years ago, but I still struggle giving up coffee. I do not drink it daily but it’s been hard to eliminate, even though I know when I drink it will have to pay for it with increased burning with urination. I avoid tomato products and other spicy foods as much as I can. I recently started cutting out anything that has citric acid in it, and that seems to help a bit.

You lose a sense of privacy when you have IC.  A friend commented how she got over being nervous about pelvic exams after giving birth to her first child. I thought, I’ve been putting my feet in stirrups since I was 14 years old. I got over that a long time ago. I’ve gotten so used to not being able to wear pants during clinic visits that one time after a bladder instillation, I hopped off the table and started getting dressed before the nurse was even out of the room.

When I feel down and think about all that IC has taken from me, I remind myself what this disease has given me. I have more strength than the average person. I am capable of pulling myself up after being repeatedly knocked down. I feel a bond with other people who have chronic illnesses because we know what it is like to grieve over the healthy person we used to be, and grieve over the person we will never get to become. It has made my faith in God deeper because I trust in Him no matter what.

I also feel empowered. I have had IC for most of my life and have tried several different treatment options. I do not know everything about this disease, but I learn more about it with each treatment I try and each year that I live with it. I love being able to give advice to other people suffering from IC and tell them what my experiences have been. At the last appointment with my urogyn a few months ago, he asked if I could do him a favor. There was a 17 year old girl in the next room, crying and in despair because she was in pain and no one understood what she was going through. He asked if I could talk to her. I walked into the room and saw this young girl with red, puffy eyes holding Kleenexes in her hands. She reminded me of myself when I was a teenager and first diagnosed. I wrapped my arms around her and said, “I know exactly how you feel.”

IC can be a very lonely disease. I have a wonderful family who are extremely supportive, especially during flares.  But I have found one of the best things to help is when I can reach out to others who are going through the same struggles I am, whether I am the one giving support or being supported. I am beyond grateful for the Facebook IC support group I am in. It is wonderful to be able to ask questions about treatments or diet, or even just vent when in pain.

Living with IC is not easy. I have accepted that this is the battle God knew I would be strong enough to fight. And I am fighting. And I am living.

 

 

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