Patient Stories - Sheryle (IC/IBS)
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I began having female problems at 16 years of age. I don’t ever remember a time when urinating wasn’t painful. I was a late bloomer and it was evident when I did begin menstruating that I had problems. My periods were never “normal.” Whatever normal is. Within a year of starting, I had to have surgery to remove one-half of my right ovary and was told I had endometriosis. In those days, most anytime someone’s abdomen was opened, the appendix was also removed as mine was during that surgery.
I married my best friend, Jeff, in August of 1978 at the ripe old age of 19, after having dated for 3 years. I was raised in a very strict home and taught abstinence until marriage. That was 30 wonderful years ago! Miraculously, 14 months after marriage, in October of 1979, we gave birth to a beautiful daughter, by C-Section. Eighteen months later, in 1981, the Lord gifted us with our second child, a son, again by C-Section. Because of some strange reason, I never dilated even after being induced with both pregnancies. Yes, our children are only 18 months apart. It was challenging for those first few years, but they have always been VERY close friends, for which we are grateful. I home schooled them and they are both very successful business people today. It was worth every minute of commitment to our children, though it was challenging sometimes physically for me...
Just six months after our son was born, in 1981, I was hemorrhaging so severely that my gynecologist suggested I have a hysterectomy. Intimacy had become a bit painful and the Doc was convinced it was due to the inflammation of the uterus and its pressure on the bladder, etc! I would have done things different had I known at that juncture in life there were other options. Hind sight (no pun intended!) is always 20/20!
In 1982, at the ripe old age of 23, I had to have 5 small cysts surgically removed from the outside of my bladder and colon, along with a bladder lift due to incontinence - my abdomen was opened for the fourth time. I know now this was caused from having a hysterectomy - which removes the “support” system of the bladder. I continued to have bouts of painful bladder jags, but it seemed benign; the pain was not unbearable. I was put on estrogen (estradiol), which I took orally and also injected myself once a month. It caused me to gain some weight and develop numerous cysts in my breasts, but brought enough relief that I (ignorantly) felt it was worth it. I have since had cysts removed from both the right and left breasts. Thankfully, they were nothing serious. I have had tube surgery twice for my left ear, and carpal tunnel surgery on both hands. In August some years ago I helped my husband put together a trampoline for our children. When we were finished I ran inside to go to the restroom and my husband asked me what was wrong with my fingers. I didn't even notice they were blistered. I had almost no feeling, but the carpal tunnel surgery worked and I am glad to say my hands are fine today!
Every year when I went to the Gynecologist for a check up, I would mention that my bladder was painful, to which I was always told that it was due to the uterus being gone. However, as the years passed, the bladder became more and more painful and I had begun to have serious incontinence with laughing, coughing, etc. The pain was beginning to effect my quality of life. At this time, the Doc suggested another bladder lift called the Burge procedure. This really stopped the incontinence and took a lot of pressure from the bladder. (This was done in 1989)
In 1992, I went for my yearly check- up. When the Doctor examined me I thought I was going to pass out, due to extreme pain in the lower pelvic area. I saw the panicked look on his face and realized something was seriously wrong. He asked me if my husband had come with me, (which he always does). I said he was in the lobby and asked what was going on. He asked if he could do a vaginal ultrasound and if it was ok if my husband was present. Of course, I agreed. (Dr. German has always included my husband in his care for me - he is a wonderful, caring physician). I am saddened he is retired due to health problems.
When the ultrasound was performed, we all saw the lemon-sized tumor on the outside of the bladder. Dr. German’s face was ashen, and we knew this was a serious situation. He asked to confer with a couple of other Doctors and would get back with us within 72 hours. I know now that he felt sure he was looking at a cancerous tumor. Of course, we were worried.
Dr. German scheduled me for surgery and sent the tumor for biopsy. When the results were back, he called (I could hear the relief in his voice - and the concern). The biopsy showed the tumor was benign but that it had grown to surround a piece of fallopian tube that had been left in my abdomen during the hysterectomy. Dr. German did not do the hysterectomy. It was done by a OB/GYN in Houston, Texas.
In 2000, I had to have exploratory surgery due to more pelvic problems. Doctor German had to remove another cyst that had grown due to, again, body parts being left in my abdomen when the hysterectomy was done. It’s a wonder I didn’t die from infection! No doubt, God was in control. It’s amazing how the body will encapsulate a foreign body to keep it from causing further harm. God’s handiwork is amazing! I was still having bladder pain and by now, I was having to go to the bathroom up to 20 times per day and 3 or 4 times during the night. (No wonder I was always exhausted!)
In 2001, I began having severe pain just under my diaphragm and wondered if I was having a heart attack. As it turns out, it was a diseased gallbladder. Surgery again! By this time the bladder pain was getting out of control and was in my thoughts continually. When I went in for my yearly exam this time, Dr. German had me do the questionnaire for suspected Interstitial Cystitis and sent me to a Urologist.
In March of 2001, my Urologist did the potassium test in the his office. He told me the results were “inconclusive.” ( I was trying to be tough and should have shown just how much pain it did cause.) My opinion of that - I was having so much pain that the potassium only felt like more of the same, but more intense! The next step was to schedule me for a hydrodistention under general anesthesia. The findings were multiple glomerulations and extreme inflammation of the bladder with a couple of areas that looked like ulcers forming.
My paternal grandfather had bladder problems his whole life. Two of his three daughters had bladder problems as well. I have a niece (My oldest sister’s youngest daughter) has all the IC symptoms but has yet to be diagnosed. I truly believe this disease is hereditary.
Immediately after the first cystoscopy I was put on Elmiron and Elavil and given a very light pain medication. The procedure itself brought me some relief for a few weeks. The Urologist who diagnosed me is a wonderful man whom I highly respect. I regret that I was unable to stay with him, but due to our insurance going to HMO, I was forced to go to a physician in the network. This has turned out to be a blessing in many ways! The Urologist I now see specializes in IC!
My medicines have been changed several times over the years in an effort to “fine tune” them to meet my needs. I am currently under the care of a Doctor at the Baylor College of Medicine in Houston. I have run the whole gamut of “helps”: numerous lidocaine instills, pain medication, pudendal nerve blocks, sitting in a hot tub of water 2 or more times per night, crying because our intimate life has become very difficult, hydroxyzine, Urelle, Neurontin, Lyrica, B &O suppositories, managing my diet, heating pads and/or ice packs, etc. I am considering biofeedback and have been referred to have physical therapy.
I am happy to say that I am not miserable every day, in fact, some days are quite manageable.
At my last check-up I was told I have another small cyst on the outside of my left urethra. We’re quite sure it’s also due to the botched hysterectomy but it’s not causing any serious problems at this time and I don’t want to have surgery again. Please allow me liberty to say I hold no hard feelings to the Doctor who performed the hysterectomy. He did the surgery by vaginal removal at my request. Because I don’t dilate properly, it was a difficult process, thus, the problems through the years.
Whatever the future holds, I have taken the stance of being on the “progressive” side of this unfortunate disease - I refuse to lay down and give up. I educate myself a little more almost every day. I read anything I can get my hands on regarding research for a cure for IC. I have volunteered to be a part of a couple of studies and am a tissue donor. I have had numerous cystoscopy’s in order to document the progress of this disease. I am 49 and having serious joint pain and irritable bowel syndrome.
I did not have IBS before I was diagnosed with IC. It is so bad that I had to go to the Doc yesterday (10/28/08) and have IV fluids to build my body back up. This is a very serious malady but there are more good days than bad and I have a wonderful Urologist, Pain Specialist and OB/GYN who all work together for the betterment of my health. I have the best husband in the world (Jeff) who is both understand and proactive in helping me get the help I need. I thank God for them and pray that soon they or someone will discover the key to unlock the missing pieces of this puzzle and put an end to IC.