Tag Archives: LPHS

My LPHS story

I’m a 24 year old female from London, England and I have been living with LPHS for about 7 years now but only been dignoised for 2. Like many of the story’s I’ve read on here, it started out with in what I can only describe as a red hot pain in kidney, that would stay for 3 weeks on end and let up for 1 week and start all over again. I would have episodes of this for 3 months, then it would disappear and then reappear and so on. As you can imagine I spent many days in and out of hospital, being told it was maybe a uti that traveled to my kidney and would be given countless amounts of antibiotic because the amount of blood cells and blood that would show up every week at my doctors. Every day was a struggle as the only pain relief I had was paracetamol as due to my other illnesses I can’t take ibrophan or anything of the sort. This went on for many years, still with no answers. Fast forward to November 2012, my LPHS had become completely unmanageable I was constantly in pain, just having a couple of days free of pain and then starting over again with this come pure blood in my urine (when I’d go to the toilet I was passing blood with tiny amounts of pee) I was admired another 4 times within a space of one month, countless tests where run and again couldn’t really find anything to put it down another uti that’s probably traveled up to my kidneys and was given more antibiotic, along with dyhidracdine and this carried on for another year and half. Being past around to different specialists, one even turned round and told me there’s not one thing that can be down for me, I’ll probably be on pain meds’ and bed rest for the rest of my life. I’d hit my wall, I’d honestly given up hope; i really believed that maybe this doctors right, there’s nothing no one can do for me and I just have to get on with it. My GP had heard back from said specialist and decided to take action, she called the hospital and demanding I be seen by (sorry I completely forgot the name of the department) with much resistance, I was finally given an appointment for 3 months time.

The doctor was a good send, he read over all my notes, listened to what I had to say and he said “I know exactly what’s wrong with you and I’m sorry it’s taken this long for you to get to me” he explained to me about LPHS but not in great detail, just the basics and said that there is something that could be done but because of my poor health, thy don’t know if the odds are in my favour. I was told a lot of planning and meetings would be needed to state my case and see if they can get the go head. That was November 2014 and that was the last I heard from the doctor, I’ve had no follow up, no contact what’s so ever. My doctors in the process of contacting his department to find out what’s going on but until then.

Advice is very much welcomed as I’m still pretty in the dark when it comes to this illness, all I know is from what little I find on line. Thank you.



Still alive and living with LPHS

I had severe flank pain started in the late 80’s I was in my mid 20’s had just had my 3rd c section. I kept going to the Dr. for what I thought was a uti nothing would show up except blood. I held several jobs and missed work occasionally due to flare ups, some were tolerable others were not. In 2004 my husband of 22 years became very ill later to find out he had West Nile…yes a little mosquito kicked his butt. I thought he was going to die he ended up with meningitis was transported from one hospital to a bigger hospital and in the hospitals for over 2 weeks, after he returned home my disease reared it’s ugly head we have since found stress is the main trigger for me. I was afraid of losing my soul mate that triggered my disease and we have not been able to put it away since then.

I had a job I loved I was in law enforcement I was a alternate Sargent as well as a training Officer, I loved this job and was very good at it. I kept getting sick after years of them telling me I had to take a vacation because I never missed work. I missed some work and after others complained and even with Drs. notes I was fired, it broke my heart I felt devastated.

I tried other jobs and landed leadership positions I always ended in the hospital with my LPHS. And then I would lose those positions.

I almost went insane I always had the support of my Husband thank goodness for him he never doubted me and my pain, other family members did and I lost friends because I couldn’t make any plans.

I was diagnosed two times I refused to believe it but finally in 2004 I was told I didn’t have to believe it, it is what I have and I need to face it.

In 2010 I had an episode last for three months we put a pain pump in and in order to do that I had to meet with a psychiatrist they tested me and the test did show I am in constant pain.

I think the more we get this disease out for others to see maybe more people will realize what we do go through.

Just Diagnosed with Suspected LPHS

I was just diagnosed with LPHS. After 8 months of horrible pain, nausea, kidney infections, kidney stones, and just feeling like I have gotten hit by a bus- I have finally found a diagnosis that fits. I’m 16, so I’m still treated by pediatric doctors. My pain management doctor in Atlanta had abandoned me before I got this diagnosis, and a pain clinic in Boston had turned me away. I had to go in search for something that fit, and I finally found that something: Loin Pain Hematuria Syndrome (LPHS). After exiting my Atlanta adult nephrologist’s office this morning, it was like I was walking on air. I have finally got a diagnosis that fits and he is a man with a plan. Dr. Handelsman was so helpful and I know he could see my relief. He has treated 3 LPHS cases, so he is what could be considered the Atlanta expert. I highly recommend him if you have think you have LPHS and live in the South East.

I finally have something with a one of treatment, and I can’t wait to get started. Anyone else have LPHS? If so, how have they treated it?

Pain Is My Best Friend

Hello. I am Melissa. An independent, thirty year old mother of two. When I was 16, I had my first kidney stone. Convienently, my first surgery to have one removed. For 14yrs, I have increasingly been spending my time in Emergency rooms all for the same answer, ‘yup, you have kidney stones.’ Finally in February last year, I demanded my PCP to send me to someone that could lessen my stones as they had become constant and far more debilitating than the pain I had always learned to work around. So to the urologist I went. Longing for an answer and an escape from the recluse my pain had created. I was only disappointed when he told me the pain couldn’t be from just my stones, and there were other symptoms that were alarming and requiring of a Nephrologist. Dr. Liu is amazing. Had she not been as dedicated as she were, or studied where she did, I would still be just as answer less. A kidney biopsy and an argument between her and my PCP, I am now in a pain clinic. My second visit will be next month. The first thing he said to me was that my biggest problem will be in finding a doctor who can give me the answers I need. So now, I have an answer. My kidneys are 50% dead with a very thin membrane, and I have Loin-Pain Hematuria Syndrome.

I am a very positive person. I have had horrible things happen in my life, family that isn’t blood, but I have always had this spark inside me that knew everything would be okay if I just made the best if it and pushed forward. I think the plug has fallen out to the jar of that sparks fuel.

In the last year, I have lost my job, school has forced a medical leave of absence for three semesters, and my normal working out, working, going to school, taking care of the household life does her best on a great day to vacuum the floor without puking.

It was hard to accept that the girl who wanted to live to be a hundred, had to do her best to make it just ten more years. But I did it. I spent four days crying and feeling sorry for myself and all the things I would never do and decided I’d had enough. That wasn’t me.

Now I am stuck trying my hardest to find a way to get back to my ‘normal’ way if life as much as possible.

Is it wrong to just want to live as normally as possible until you die?
How can I find a way to live with this pain when every doctor you see’s first sentence is ‘I’m sorry it took so long for me to get in here, I had to research your disease because I’ve never heard of it before’ ?

I’ve done my best to deal with this pain as best I could for as long as I could. And now that I need help so that I can work and provide for my family, cook and clean for them, hell even make love to my spouse, I feel more lost and alone than I ever have.

Just me and my pain.
Standing toe-to-toe.
Fighting each other’s Will,
Both still standing in the same spot.

My brother’s keeper

Dear LPHS and other pain sufferers, I am compelled to share the following information with you for a two-fold reason: 1) that actual sufferer of LPHS is a dear family member and 2) said sufferer is currently incarcerated and cannot help himself.

What I am about to share with you is an account of his years of pain, in his own words from a letter he sent to me (I will not add or delete anything, except for any proper names or anything that might be considered a breach of an individual’s privacy):

Hey bro, Well as far as my kidneys. You know what you read already. I have microscopic blood in my urine on occasions but it is mainly macroscopic (you can see it). When I do urine tests it is usually 3 blood or more. I have constant kidney/bladder infections. In fact, I am finishing up a course of Bactrim for one now.

I have pain that would put a bull in traction damn near EVERY day. I have gone to medical on numerous occasions with very little help. **** doesn’t want to pay for anything. They won’t even send to see a Urologist or Nephrologist for it. I have been sent out to civilian emergency rooms only twice. I am usually put on a 5 days course of Ultram, which is a very low dose, non-narcotic pain med. It helps some but with only 5 days it doesn’t control the pain through the whole episode. I have bad pain that can last up to 30 or more days. After 5 days of the Ultram I am just starting to get some relief and they cut me off.

The Nurse Practioner I see now is trying to help me. He has submitted my case to the Pain Committee but with no success. They tell him to put me on high doses of Tylenol and Motrin. I can’t take those for long periods of time because they are bad for my kidneys. Some days I really wish I was dead instead of being in pain. I know it sounds bad, but it’s true. I have cried myself to sleep more times than I can count. I could just use someone to help me force these f***ers into really helping me.

This disease will not kill me but it sure as hell makes me wish for death. I don’t need a lot of help, just enough to keep me going until I can get out of this rat race and see a REAL doctor. They think in here that everyone is just trying to get pain meds. Everyone wants to get high. Then when it comes to someone with a real problem, they get screwed. They finally have my blood pressure under better control. It used to get as high as 200/170 with a pulse rate of 165. That is enough to cause a stroke. It is usually only that bad during severe episodes of pain.

I am on 3 different meds for blood pressure and pulse control. Verapamil, metoprolol, and lisinopril. they at least keep my pressures under better control. When I have a severe attack though, they still go up. The Nurse Practitioner told me that is what got his attention because you can’t fake blood pressure. That is a big problem with this disease because you can’t SEE it so the docs think you are either drug seeking or mental. I have had to deal with that for years.

It took 4 years of tests and psych evals before I was finally diagnosed in 1998. It was thanks to those two women from Europe. It has been a very long, painful trip since I had my first kidney stone in Oct. 1994. After that, it all went to shit. I passed 12 kidney stone in that next 2 1/2 years and I’ve had 1 in here back in Feb 2011. The kidney stones didn’t hurt as bad as this disease. It is worse than giving birth because at least the pain stops, pretty much when the baby comes out. This LPHS pain continues for far longer.

Well dude, not sure what else to tell you. I do appreciate you doing this for me. Take care of yourself and I will talk at ya’ later. I love you all.

LPHS and Endometriosis

Yesterday I was diagnosed with LPHS as a 28 year old female. In 2007 I was also diagnosed with endometriosis and have since had 4 surgeries to remove nerves and the endometriosis that has grown rapid in the right side of my body. I always had kidney pain, on the right side, that I just figured was pain that radiated due to the endo. However, after having had another surgery in October, I ended up back in the hospital with severe kidney pain. Again no stones or signs of a UTI, so the easy answer for my doctors was to blame the endo, put me on meds and send me home. This time the pain has gotten worse and even the medications are useless. I just got back to work from having been on leave and I was in tears yesterday from all the pain in my back. I finally went back to my primary doctor who also specializes in neuphrology and due to my urine cultures and symptoms was diagnosed with LPHS. My question to him was, what do I do? The look on his face was very alarming as there isn’t much to be done. He knew of some patients that were placed on ACE inhibiters but my blood pressure is super low so I’m not eligible for such option. I’m looking for guidance as I want to know if anyone else has the combination of LPHS and Endometriosis (Stage 4). Also, suggestions on what to do and how to make my quality of life better. I’ve been on narcotics before for the severe endo pain and I really don’t want to go down that same road. I feel as though my pain reacts to nothing, so why bother being on something when I’m going to be in pain anyways. I’m also scared that since I’ve been in the hospital so many times I may be labeled a “drug seeker” as when I enter the first thing they do is give me dialudid through the iv to try and take the edge off, which is prob the only thing that helps but I can’t live on that! AND the iv works but when I took the meds, it helped very little and keep in mind this is extremely heavy narcotics. I’ve also gained 40 lbs in the last year, I was very skinny to begin with, but both diseases have made me feel self concious and I barely eat because I’m so very nauseated. I feel I’m way too young to give up. I’ve dealt with the endo and will deal with this just as well. I’m just at a loss on what to do next, some said (including my doctor) a possible kidney biopsy, pain management, accupuncture, excersie but I’m just exhausted and don’t know how to handle all of this. HELP!

Warm Regards,