Katsy,
I am sorry that you are experiencing pain and the doctors are unsure of your diagnosis. This is very frustrating.
I was diagnosed with PSC in 1993 after having my gall bladder removed. They found misshapen hepatic ducts. At the time, my initial gastroenterologist didn’t know what I had (she thought it was cancer because of increased density found in a CAT scan) so she got me a referral to a liver specialist who made the diagnosis. At the time I asked the doctor what I should do about the abdominal pain, he said, “Grin and bear it.” I thought that was an exceedingly callous and not helpful. Unfortunately, doctors may not know what to do in these situations.
Five years later, I had a blocked common bile duct. At that time I experienced severe pain, headaches, and low grade fever. They opened the duct and put in a temporary stent. However, as time went by the pain/discomfort continued.
Where is your pain? Is it your stomach or do you mean your abdomen generally or by your liver? My pain is below my lowest rib near my liver. It comes and goes; I still am able to exercise and carry out regular life activities.
I have talked to my doctor about this discomfort. However, I also have Crohn’s Disease (first diagnosed at Ulcerative Colitis, but now they aren’t sure I have either.) My doctor doesn’t know if the pain is from Crohn’s or PSC. Also, he said they don’t know the effect of intrahepatic deterioration on discomfort and pain.
You might want to keep a journal of your pain---where is it, when does it happen, is it after eating or medication, what foods are you eating, does it impair your functioning, what helps relieve it, etc. This might help you decide what to do to help yourself. For example, if a certain food gives you pain, then obviously stop eating it. Take your journal with you to your doctors and share your information.
Are you seeing a specialist---gastroenterologist and hepatologist--who knows about liver diseases? If not, you may want to get a second opinion? Even if you are seeing a specialist, you could seek a second opinion. It is important to get the correct diagnosis to get the right treatment for your illness.
Take your list of questions to the doctor and write down the answers. Take a second person with you to help write down the answers. Sometimes I get home and can’t remember clearly what the doctor said, and then I am very frustrated. Does your doctor have a Physician’s Assistant or Nurse Practitioner that you can spend more time with?
Unfortunately, because of liver disease we can’t take NSAIDs---Aleve, Advil, Ibuprofen, etc. Once an Orthopedist had me take Aleve. It was wonderful not to experience any pain from my liver and the arthritis in my joints. But then, I developed pain at my liver “big time.” I should have never been on the medication. My liver doctor has suggested Tylenol, but that has problems too for the liver.
I find that I have to wear loose clothing. Anything tight at my waist aggravates my discomfort. I also have to remind myself to sit up straight. For example, when driving, my car seat bends me forward causing me to recognize that I have discomfort. I have to keep my weight regulated, because any gain tends to worsen my discomfort.
I find that patience is required in living with PSC. I have found that as time passed, I became less aware of my discomfort. This is not to suggest that you should do this because I don’t know what level of pain you are experiencing.
I suggest you continue participating in this and other forums. If you are in a city, are there any local in-person liver-related support groups you could attend? Also, keep reading as much as you can.
Hang in there.