Medullary Sponge Kidney Disease (MSK) Community
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medullary sponge kidney ovarian cyst PAIN

I've been in a tremendous amount of pain for the last three weeks. When the pain started it would come and go...then it got worse and worse. I finally ended up flat on my back unable to do anything other than go to the bathroom. Standing hurt. Sitting was excruciating. I couldn't even stand long enough to make coffee. The pain seems to be getting a little better.

I had 3 ultra sounds and a CT scan. I was diagnosed with medullary sponge kidney and a 4 1/2 cm cyst on my ovary. It is a simple fluid filled cyst. Neither the Urologist or the Gyn thought that my pain could be caused by either condition. The pain has been very weird. It has bounced all around the place. I felt like I was in an unending contraction from labor,. I felt like I had a baby, my kidneys do hurt, under my ribcage hurts...From my bra line down to my groin (very upper inner thighs I have been in extreme pain. It has moved a lot right now it is mostly in my kidneys and upper abdomen (in between my ribs)

My PCP said she thought I had a cyst rupture weeks ago and that my pain is from fluid moving around in my peritoneum. Does this pain sound like anything anyone here has experienced with just the sponge kidney???also, I don't do well with narcotics. The norco they tried made my thoughts funny. I am only taking Ibuprofen. Does anyone have any other ideas for pain relief? The ibuprofen is really helping much. I am taking 800mg 3x a day...Thanks  :)
4 Responses
1269632 tn?1297110702
Hi there, I'm sorry you're feeling so unwell. You're not alone with your pain if that makes you feel a tiny bit better. I often have pain in my kidneys and ribs then moving down to my groin. The pain in your upper thighs sounds quite similar. I have deep pelvic pain and awful aches and soreness in my upper thighs. Several doctors have told me that I shouldn't be in so much pain. One pain management doctor told me that my pain was residual pain from passing stones. Whatever I do the pain is always there. I had 5 months off work. The only pain medication that has provided me with some relief is morphine. I take two slow release tablets a day. At first I was a zombie on them but I can now work, drive and pretend to be normal. I still have pain though and when it's very bad I take liquid morphine to give me extra relief. Hope that helps even if it just lets you know you're not alone. X
Avatar universal
Thank you. I kind of feel like crying. My husband is on morphine too. He has a blood disorder. I haven't ever passed a stone. That's the weird thing....I don't know if morphine would make my thoughts weird like the norco or not. I am not sure if I've been fully diagnosed. I'm so sorry for your pain. I know life on morphine can be hard. My husband needs it for his pain. He also beats himself up for it. He feels he's addicted. The pain management doc said he was something else, dependant? He stopped going. I think I'll tell him about the liquid morphine. Did you have pain before you passed stones? I guess it kind of helps to know I'm not alone. I think it will definitely help when I am pushing for help with the pain...
Avatar universal
My daughter had severe pain from a ruptured cyst that they thought was appendicitis at first. The fluid collected under her appendix and we spent some time in the ER. Also, be careful with ibuprofen. It is nephrotoxic. Pain control is tough. Just get on it before it gets out of control.
1269632 tn?1297110702
Hey there, how are you and your husband doing? I understand you saying your husband is beating himself up over being on morphine. There's a certain reaction you get off people when you tell them you're on morphine. My GP has me on a low slow release dose 10mg morning and night. He says this isn't too much to get dependent on? I also top up my pain relief with paracetemol (Tylenol? If you're in the US) this does help me too. It's about finding the right combination. I was off work for 5 months and I have a drawer full of tablets that didn't work. I don't feel like a zombie or have funny dreams and I've managed to start teaching little ones again something I definitely couldn't do if I was a zombie! Keep going and remember you are so not alone! Beth x
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