Meet Steph: More than IC

Hi, I am Steph and I am a 26 year old who loves poetry, music, art and just living life. Below is the story of my health conditions including IC. What I have written below is mainly factual. This disease along with many others I will mention are not easy to deal with; However there is hope in relationships, treatments and in being positive through your situation.

As part of my family history, my mother never received the Rhogam shot for blood type differences between her and my father. This is something that may have played into the reason I have so many diseases.

From the time I was born, I suffered from re-occurring bladder, kidney and ear infections. My doctors didn't know exactly what was happening, so I was catheterized hundreds of times from age 0-8 for VCUG’s. I also underwent numerous scans and other tests to determine if my bladder and kidneys were working properly. My parents struggled emotionally in dealing with my illness. They thought I was just wetting the bed, but no matter what methods they used to try to get me to pee in a timely fashion, I was not improving. 

Shortly after my 5th birthday, I was sent to Rush University Medical Center in Chicago where I met an amazing urologist. He diagnosed me with bi-lateral reflux of the ureters with extensive kidney damage. The damage to my kidneys were stage 3 and stage 4 which ultimately meant I may need new kidneys.  My parents and I are Christians and believe in the power of prayer. I was miraculously healed of the damage to my kidneys and had the surgery where I was cut hip to hip. Awesomely, they only had to repair my ureters and move them back into place;I did not need new kidneys. The damage that was there prior to the surgery was gone. It was truly a miracle :) What I didn’t know, is that all of the catheterizations, the stretching of my bladder, frequent infections, and surgeries would lead to later problems.

Shortly after the ureter surgery, my parents realized that I couldn't smell or breathe well, and was snoring heavily at night. The doctors told me I needed my adenoids taken out because they were too were too large and were blocking my airway. I had those removed, then went on with normal life until I hit age 10. I helped my parents build their house with my siblings. I was carrying a lot of materials around the property. Due to weak abdominal muscles from the surgeries past, I developed two hernias at the site of my old incision and needed surgery to repair them. This meant more scar tissue. I also began to notice other girls getting their periods and I still had not had one. I began to have pain when I urinated, as well as frequently throughout the day and night. The stinging, burning, aching pressure, were extremely taxing on my everyday life. I kept going to my doctor and tested negative for urinary tract infections. I did have skin and dead cells in my bladder as well as traces of blood. 

My doctor began to become concerned. I was 14 when I got my first period, and I remember it well. It was horrible, and extremely painful for me- I also realized, my bladder was on fire right before and during my cycle, unlike any other pain that I had experienced.  Bowel movements also became very painful. I continued to try and use tampons and realized I couldn’t get them in at all. It was excruciating.

I then began to develop extreme mood swings around the time of my period but then repeating and cycling throughout the month. I began to not be able to handle my emotions very well and began to lash out on my sisters and brother. My emotional state began to deteoriorate due to the chronic pain. I continued to use music, photography, art, and writing as outlets in dealing with these health problems. My thoughts were so negative at this time: Why was this happening? Why can’t the doctors nail this down? Doctor after doctor on an HMO was the most difficult process mentally and physically that I had gone through. I could not see the specialized physical therapist I needed to see to try to work on my abdominal scar tissue because of conflicts with insurance.  No one had answers for me.

Finally, I was sent to a Urogynecologist who told me I had endometriosis after performing a laparoscopy. Even after that surgery, I knew something else was wrong. The pain was different from anything I had experienced. The burning/cramping/heaviness in my bladder was getting worse every year. I did realize that the pain of my periods overshadowed the pain of my bladder and I couldn’t tell the difference between what was causing me pain- my bladder, uterus or my intestines. 

The Urogynecologist then put me on birth control continuously, which I deeply regret. I was depressed, vomiting, and wouldn't stop bleeding. I went back to her and told her I needed something else to fix this problem. Every single month I would get horrific menstrual cramps and emotional instability that would last for four days. I resorted to taking Dilaudid and hot baths to try to get me through the pain. I realized the extent of drug allergies for me was a painful reality. I couldn’t take many of the medicines they wanted me to because I am so sensitive to medication. I passed out at work, passed out at college, and had to move my schedule to accomodate my monthly cycle. I would begin vomiting because each cramp was like a contraction that could almost be timed.  

The doctor then did research and whisked me off to one of the best fertility/endometriosis specialists in Chicago. He put me on what was then experimental: the Femara- Letrosol treatment which shut down my period for a year. Towards the end of the year, I began to develop headaches, lose my vision and get breast lumps that became permanent in the form of fibro-cystic breast syndrome. Shortly after these things were discovered, I was pulled off this treatment and began realizing I would live with this pain and I slowly began to give up.  Countless ER visits, hospital stays, doctors and specialists were consulted, yet none of them could answer my questions completely. 

During this time, I began to have severe panic attacks that caused me to be in the ER several times. Through counseling, prayer and family support I overcame those without drugs. I realized that all of the trauma when I was younger of people holding me down, shoving catheters in me and making me pee on a table for the VCUG had mentally scarred me. It was subconscious for awhile until my body couldn’t take it anymore. Shortly after that, I had felt two large lumps in my breasts, got them checked out and they both needed to be removed because they were questionable. I still had all of the bladder symptoms but learned to deal with them and ignore the pain.  

After all of this, I switched insurance and didn't have relief of any kind. I went to a different doctor who sent me to a different gynecologist. I had not had sex before marriage, but realized I still had a very hard time getting a tampon in. My hymen was broken due to so many medical procedures and she recognized that I have pelvic floor dysfunction.  The dysfunction is so bad that my bladder is twice the size it should be from being held back by the pelvic muscles. She tried to put me on imipramine and a different progesterone type of birth control, but I could not tolerate that.

I was 18 by then and was working when I realized I had not peed for two days. I told my boss I needed to go and my mother took me to the hospital. It was there, I met my awesome urologist who diagnosed me with severe IC and confirmed severe pelvic floor dysfunction through the surgery. My bladder looks like raw hamburger. I went in to his office and did a uro-flow test and bladder distention as well as DMSO treatments.

I have since had 4 hydro-distensions as well as rescue instills which made everything worse. It seems that once anyone goes into my pelvic region a bomb would go off and I’d be stuck with a catheter for a couple weeks with retention from my bladder not working properly. None of the treatments worked. I had been taking so many cranberry pills prior to the IC diagnosis that it had damaged my bladder. My bladder was also damaged from retention several times at 1.5 Liters. My problem is more retention than going a lot; my bladder gets so tired, I will not pee for days. I developed another cystic lump on my skull which was identified as part of the fibrocystic syndrome. 

Following this procedure, I tried birth control again, and became more depressed and anxious.  I had met my future husband and he helped me work through many of the emotional issues from  being chronically ill. Even still, there were so many issues. No one knows what it’s like to explain these things to your significant other unless they have had to do it themselves.  I had to explain my whole health history, the fact that I couldn’t have intercourse (still currently cannot) and explain that I had problems with painful orgasm and even getting aroused. How could I get aroused when the pain was so severe?   I subsequently started doing pelvic floor/visceral therapy for the pelvic floor dysfunction. I am currently still doing that and have seen amazing improvements. From all of the abdominal surgeries I have so much scar tissue and adhesions. The highly trained physical therapist will do internal work and motility work to break up thick scar tissues and move organs around that are stuck and not as mobile as they should be. 

Two years ago, before I got married, I accepted a mission. I had to get as well as I could get before marriage. I wanted to be the best I could be for my husband. People were telling me not to marry him because I couldn’t give him what he needed. That was probably one of the most painful things I had to mentally deal with. This of course is not true, he loved me and accepted me for who I am. 

Right before our engagement, I had both my gynecologist and my urologist do a bladder distention and laparoscopy at the same time. I would never recommend these surgeries together to anyone but I was determined and wanted answers. The first thing they diagnosed me with was IBS, not entirely surprising based on symptoms I was having. The surgeon was very vague and said that there were endometrial cells but she didn’t think it was that big of a deal in comparison to my bladder. I was at my wits end. Nothing was working, and I spent days in agony.  My urologist wanted me to stay in the hospital after surgery and they ended up sending me home right away. I had to get rushed back in because my bladder was at 2 Liters in retention which is very dangerous.  I ended up having a catheter for two weeks followed by a urinary tract infection caused by the catheter itself.  A year ago, I was on a plane ride and suffered an acute attack on my left foot from Raynaud’s disease. My feet will turn blue and have no circulation. I have since found a great doctor who specializes in Raynaud’s at UIC in Chicago, IL.  She also helped balance out my vitamins and noticed a few other things that were off in my blood work.

For the first time, people starting pushing my dieting habits on me. I had an inherent need for sugar my whole life. I would drink 2 Liters of Pepsi a day just to stay awake. I found out that I had a severe vitamin D and B deficiency. They did a colonoscopy to check for Celiac disease, but found that I am not celiac, but still sensitive to gluten, wheat and sugar. Knowing this information, I decided to make huge changes.  I was willing to try anything to make this pain subside even just a little. My nutritionist believed that I had a candida overgrowth. She pulled me off of dairy, sugar, processed food with chemicals, and stuck to a strict IC friendly, gluten free, sugar free, dairy free diet.  It was torture. I didn’t think I could make it. I lost so much weight, so we decided to put dairy back in. I noticed dairy didn’t affect me as much as sugar does. 

To this day I am gluten free processed sugar free. It has made all of the difference in bladder/endometriosis/ and symptoms of the other diseases. I also ended up having a breast biopsy last year for fear that I had breast cancer. The tissue was abnormal, but it ended up just being fibrous.  My thyroid is also currently in question. I have several large nodules on it, and have a lot of the symptoms of hyperactive thyroid. These are on-going things that I am being tested for. 

In the past 2 months, I have had some amazing discoveries. As I mentioned in the beginning, I have a large family history. My siblings have auto-immune diseases and random symptoms. I have been following everything very strictly but noticed that when I was attempting to be intimate with my husband, I’d have sharp stabbing pains with arousal and pain for a week after the moment of climax. I consulted my old Urogynecologist. She did trigger point therapy in my vagina to try to numb some of my muscles and make them less tight. That was excruciating, but did help me a lot.  

She poured over my medical files and photos; looking for clues that may have been missed. My physical therapist was insisting that I had blood pooling in my uterus. Based on a previous CT scan, my liver was swollen and large varicosities could be seen all around my uterus. My mother had been diagnosed with this and had a hysterectomy at a very young age. I was not happy with this, as we really wanted to start trying to have kids if possible. My doctor was upset because the varicosities were clearly there in photos from a previous surgery. The other surgeon did not tell me, I believe, because the insurance company may not have covered the surgery completely. 

Ultimately, I had two choices: Conventional hip to hip surgery or to go through interventional radiology for a procedure called “Double Ovarian Vein Embolization.”  The beauty of going through Interventional Radiology is that there would be no large scar. I ended up having two surgeries which were successful. They put metal coils and special foam into the refluxing ovarian veins to prevent the blood from pooling in my pelvis. 

After both surgeries, I had major problems with my IC. My bladder went into retention immediately. I was passing clots, and had to be catheterized 10 times in one week, as well as undergo a bladder irrigation during a urinary tract infection from the catheters. Currently I am still healing from both surgeries, and I am hoping to find some relief from the Pelvic Congestion Syndrome.  My husband and I have a positive outlook and are praying that we will be blessed with a child in the near future.

Even writing out some of these details bring back many emotions. There are so many little puzzle pieces; these are just a few. In a way, it is as if I am literally walking through some of these memories. Although it is painful to recall some of them, there is one thing that I hold on to; my faith in God. There is a reason why we go through things like this, and I have been able to talk to many people who are going through similar issues. Encouraging each other through the hardships that IC can bring really helps to keep on going strong. 

I believe it is important to never let any of these diseases rule your thoughts or become your identity.  There are so many treatments these days; as well as natural remedies that may help your situation. For me, when my bladder flares, I use rice socks, ice bags, stretches, and drinking extra fluids to try to help me cope with symptoms. 

One thing is for certain- You are never alone; we are all in this together, and we will keep fighting. :)

If you would like more details on this story or have questions, feel free to contact me at stephaniezwartz@gmail.com.