Living with LPHS

I am a 43 yr old female with a long history of kidney stones going back 18 yrs. 2 yrs ago I started having chronic left sided kidney pain with the same type of symptoms as the stones however no stones. It has taken me the full 2 years to convince the medical community I am not a drug addict nor am I suffering from a mental disorder of any kind. I am currently being treated by the pain clinic in my area and along with oral narcotic medication I am getting injections into the nerve area around my kidney with long acting anestetic medication. I am not free of pain and still have much breaktrough pain. I feel at a loss here as no one seems to have a long term solution. I would welcome any help anyone can offer.


4 thoughts on “Living with LPHS”

  1. I to suffer day in and day out with loin pain hematuria syndrome I am 44 and have 21 kidney stones, bleeding and pain that I swear I feel at time I could go out of my head. I have cried, walked & laid and nothing helps. My doctors tell me that my stones are just floating and I show no signs of have passing any….with the pain I am in if one of these stone do decide to pass God help me I just don’t know if I will be able to handle it.

    I feel so all alone with no place to go no one understands this, and as for my doctor which is a very good doctor even he tells me that out of all the years of his practice I am probably the 3rd case he has had. I am on a pain patch with a some extra pain pills to take only when the pain is at it’s worse…..that is most of the time. I take a blood pressure pill to take the pressure out of the kidneys, which I will say has helped some with the bleeding.

    My point being is I need a friend that knows what I am going through ..I did fail to mention that I also have Lupus and have had it for many many years, and with that said …I always thought that it was painful and it makes me sick but never as sick as I am now this is terrible


  2. I am just starting this journey and have had pain for 25 yrs.No one has ever believed me and l was close to giving up.Then l saw a story on the news and l cried.Finally possibly a diagnosis!l am elated as l was very close to giving up.l do not know where to go and do not trust. Anyone anymore as l have been accused of looking for drugs or faking this. I am excited but cautious.l pray for help! Lin

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