10 years living with LPHS

Carol Crombie
DOB 21/05/83

I have had LPHS for 10 years now. It started when I was at college, 18 years old. It started off with just a niggling pain on my right side. I was training to be a beauty therapist so just put it down to being on my feet for too long or standing awkwardly whilst doing treatments. Over a couple of days the pain would get worse like a stabbing pain but would settle down again as quickly as it started. The stabbing pain seemed to get worse and last longer each time it came on so I went to see my doctor who suspected it may be appendicitis. He took bloods off me and told me to phone back for the results the following week. In the meantime I was to take paracetomol or ibprofen for the pain. Being young and naive I thought nothing more of it and decided to go out with the girls from college that night. After various drinking games in the house we then hit the clubs in Edinburgh and had a very drunken night. As the night went on my side was bothering me more and more but I continued to drink the pain away. At about 2am I was dancing on the dance floor when I was struck to the ground doubled over with unbearable pain. My friend said the colour just drained off my face as I fell to the floor screaming in pain! They helped me outside where the staff called an ambulance as I couldn’t stand up properly and was screaming in pain. The ambulance came and examined me there and then. When they pressed in the area then let go the pain was 10 times worse when they let go – the paramedic said this was a classic symptom of appendicitis so rushed me to hospital. By the time I got to hospital I was vomiting badly with the sheer pain of it all and not helped by the amount of alcohol I had consumed. Once in hospital I was given a lot of morphine, anti-sickness injections and bags of fluid. This seemed to make a difference and although still in pain it was becoming more bearable. When the morphine started wearing off the pain would gradually get worse again so I got kept in overnight whilst they ran lots of tests on me including bloods and an x-ray’s. In the morning I was still in a lot of pain but more stable at this point. I was told that my appendix was fine and they were not sure what was causing my pain. I was transferred to the newly opened hospital in Edinburgh were I was then transferred to the gynaecology department for more tests. I was treated for a suspected Pelvic Inflammatory Disease and discharged from hospital with a course of strong anti-biotics to be taken over several days. After the 2nd day on the anti-biotics I was extremely sick so went back to my local GP. He contacted the hospital for my test results to find out that I did not have Pelvic Inflammatory Disease and they were at a loss as to what was causing my pain as all test results came back fine. My GP prescribed tramadol for the pain which I was to take with paracetomol.

After a couple of weeks the pain just kept getting worse and my stomach had started to look swollen – I actually looked pregnant, so I consulted my GP again who prescribed me Diclefenac to take with my other pain meds. By this point the pain was always there but now instead of a niggling pain it was more of a dull ache that was always there but throughout the day I would get severe stabbing pains in my right side only that would have me doubled over. These were becoming more frequent and lasting longer. I was taking all the pain meds but nothing was making a difference to the pain. I constantly had a hot water bottle on the area to try and ease the pain a bit which didn’t help but it became more of a comfort thing to have on the area anyway. My doctor asked for a urine sample and prescribed me anti-biotics in the meantime in case I had a kidney/urine infection. Again these made no difference to the pain and when the results came back they showed I had blood and protein in my urine but no infection.

I continued to go to college 5 days a week and also worked in a salon in the evening and weekends. The pain was taking a lot out of me but I struggled along. About 4 weeks later (after my 1st admission to hospital) I came home from working in the salon. I wasn’t feeling so great so went for a bath. When I was in my bath I was stuck with the severe stabbing pain, I waited for it to settle as it had in the past but it just kept getting worse. I struggled to get myself out the bath so had to shout on my mum for help. When she got me out I started vomiting really badly and couldn’t stop. My mum called NHS 24 and got me an appointment to see a doctor at the out of hour’s service. I was doubled over in pain and being violently sick into a basin. The doctor took one look at me and called the hospital to inform them I was on my way in. He gave me an anti-sickness jag and sent me to hospital with a letter. When I got to hospital we went to the assessment wards which was next to A&E were they were expecting me – this part of the hospital was newly open and a total sham (not enough beds, seats, covers/sheets, staff etc)! I couldn’t stop being sick and was by this point rolling around on the floor in agony as I couldn’t even sit on a seat. I was taken into the corridor and given another anti sickness injection in my bum with people walking past – by this point I didn’t care who seen my bum, I just wanted to stop being sick as the more I was sick the sorer I was getting. I had to go back to the waiting area whilst they found me a bed they could put me on. I was like a devil child, lying on the floor curled up in a ball crying my eyes out, rocking back and forward and still being sick. Eventually they got me on a bed and the doctor was quick to see me and give me morphine for the pain and more anti sickness drugs. It settled for about 5 minutes before returning with vengeance. I was still being constantly sick even after 4 anti-sickness injections so they had to give me bags of fluid to try and rehydrate me. With the constant flow of morphine now being given the sickness soon settled as did the pain but it never went away completely. I was sent for x-rays, x-rays with dye through the veins and a scan on my kidney. It showed I was passing a kidney stone. I felt relieved that something had finally shown up for the cause of all my pain as I was beginning to feel ‘what is wrong with me that nothing is showing up?’, ‘Am I imagining the pain??’

After a couple of days in hospital I was soon discharged and sent home. The machine to break up the kidney stone was broken so was told they would send me an out patients appointment to have the treatment done. Luckily the stone passed by itself at home so when I turned up for my appointment I was given the all clear after examining my new x-rays. I was still in pain but was told this would settle my body is just recovering like bruising. Unfortunately this was not the case, the pain did not settle, it was constantly there like a dull ache and I continued to have episodes with the stabbing pain and vomiting which put me back in hospital on several occasions over the year. The results where back to being normal and they were unable to find a cause for the pain and sickness, all they could do was treat me until things settled then discharge me again back to my GP’s care. How I managed it I have no idea but I graduated after 2 years at college and continued to work in various salons – I did however have a very bad attendance record with all my time spent in hospital!!!! I even set up my own mobile beauty therapy company with all my regular clients who were aware of my health condition and very understanding if I had to cancel their appointments. Sadly as time passed my condition kept getting worse so due to this and my constant hospital admissions I had to give up my job/business as a beauty therapist at the age of just 21. It was too physically demanding – I would work all day then go home and straight to bed as I had no energy left in me to do anything. The pain would always get worse at night which I put down to doing too much during the day. If I wasn’t working I would be in hospital or in bed at home. I also wasn’t reliable enough as I never knew when I wasn’t going to be well which would affect my client’s appointments. Instead i took an office job in its place and continued to work until the age of 26 thanks to a very understanding boss as my days off due to ill health and hospital admissions continued to get worse with time.

I have had this condition for 9 years now. The pain I had experienced in passing the kidney stone was still there although there weren’t actual kidney stones now there to pass. Over the 9 years the dull ache pain just kept getting worse in intensity and the stabbing pain was becoming more frequent and lasting for longer periods of time which brought with it the vomiting. The size of my swollen stomach just kept getting bigger and bigger, it could go up 10cm in the space of a day, and you really would think I was pregnant looking at me – I even began wearing maternity clothes I got that big. I was constantly in and out of hospital being treated for what I called ‘episodes’ were the pain became unbearable, I would be doubled over and could not stop being sick with the pain. The doctors at hospital and my GP were clueless as to what was causing my pain and the severe episodes I was experiencing that resulted in me being admitted to hospital. It was like every time I ended up in hospital the level of pain would go up a notch eg my daily dull ache would be 2/10 pain score, I would have an episode which would put me in hospital but when things settled again the new dull ache pain score I would have to get used to was 3/10. This continued every time I was admitted to hospital. I had bloods, x-rays, scans, MRI scans, cat scans, camera up the back passage, endoscoscopy and everything was coming back normal except they said my right kidney was slightly swollen/puffy but they weren’t concerned by this. In every urine sample taken I would have traces of blood and protein but no infection. On every hospital admission my heart rate would vary from 130 -180 but they put this down to the amount of pain I was in.

I was eventually referred to a kidney specialist when I was 23 years old after nothing came back on any tests carried out on me by all departments. After an initial consultation he mentioned LPHS as a possibility. He booked me in for a kidney biopsy and a month later I had the operation. My results came back and confirmed I had the condition. He said there was nothing more that could be done for me except to manage the pain which would be best done through my local GP. I was happy that I finally had an answer as to what was causing my pain, it made things a lot easier when being admitted to hospital and I was treated seriously by staff as it showed I wasn’t making up how much pain I was really in, I wasn’t just looking for morphine injections to get high, I really did need the pain relief. I thought things would get better now they knew what was wrong with me, I thought they could finally get my daily pain under control and it would stop getting worse after every hospital admission. I should be so lucky!!!!

I saw my GP for better pain relief. I was already on a lot of pain relief tablets which had built up over the years. If something didn’t work they would simply add more tablets to what I was already taking. After my diagnosis I was given Oramorph Morphine, Morphine tablets and even got taught how to give myself anti sickness injections. The pain however continued to get worse with time, not a day went by were there wasn’t the dull ache pain 24/7, not a day went by without having the stabbing pains that would double me over. The oramorph would give me some relief but was short lived. If I had to take more than 100ml of oramorph in a day then I was told I should be in hospital where they can monitor my morphine intake. My hospital admissions were becoming more regular and I just no matter what I tried was unable to get on top of the pain and the sickness.

By the age of 25/26 things hit rock bottom for me and I was at my worst I had ever been. I was now being sick daily with the pain, I was lucky if my tablets stayed down long enough before I was sick again and would bring them back up. There was two kind of sickness I was dealing with. There was the daily sickness that I could handle however when I was having an episode the sickness would change and it was more violent, constant and nothing would stop it including the anti-sickness injections. The more I was sick like this the worse the pain got. It wasn’t until the pain was under control again (usually thanks to a hospital admission) that the sickness would settle. My doctor was trying everything he could to help with the pain and sickness but nothing was working, by this point my pain on average was 6-7/10 daily. I was constantly in and out of hospital where I’d be put on a drip to rehydrate me, given endless amounts of morphine and anti-sickness injections. I was unable to work a full day at work as I struggled to sit for long periods of time. I would go to work in the morning, head home at lunch time and straight to my bed. The pain always got worse at night time so could end up in hospital, discharge myself in the morning, go to work, work until lunch time then head home again to bed. The only time I wouldn’t make it into work is when I was kept in hospital which could be anything from a night to a week. Only once things settled and the pain was more bearable would I get discharged from hospital. I looked terrible as I wasn’t sleeping at night due to the pain getting worse then, I could be drowsy from all the morphine and pain meds I was having to take etc, when I thought things couldn’t get any worse it turns out they could. My local GP was out of ideas to help me so put me in touch with the pain clinic and I thought this was the answer to my prayers, surely they could help. In my consultation I was rather emotional due to lack of sleep so she suggested anti-depressants and a pain relief tablet called gabapentin. I was to take 1 tablet 3 times a day and she would follow up with me in a month time. When I went back the tablets had not made any difference so she increased the dosage to 3 tablets 3 times a day and arranged another follow up appointment. Two months later I returned to the pain clinic and informed the doctor that the tablets hadn’t made any difference and I was getting bad side effects from them. I was told there was nothing else she could do for me but would refer me to the pain clinic physiologist as if anyone could help me it would be them. No follow up appointment was arranged, she did not need to see me again. To say I was disappointed was an understatement. They tried one new medication on me and when it did not work and I didn’t want to take them I was told there’s nothing else they can do for me! Things continued to go from bad to worse, I was now being admitted to hospital at the same time every month with my episodes, the daily pain continued to get worse and I ended up pretty much bedbound with the pain. My boss was very understanding and gave me 3 months off work to take time to get myself better. In this time I went to a private clinic to see if they had any ideas of what to do with me, my boss offered to pay this for me. The doctor I seen was very nice and very understanding. He tried to tackle my sickness as he thought if he could get that under control the pain might not get as bad. He tried various tablets but unfortunately nothing worked. He had run more blood tests on me and they came up blank, none of his ideas came through. It was back to the drawing board. In my 3 months of being off work my condition continued to get worse and it was clear I would not be able to return to work. My boss was really supportive and very understanding to the whole situation. He said my health was more important and was happy to make me redundant.

Things just kept going from bad to worse; the pain level was now 8/10 daily. When I was having my episodes now they would come on so quickly that I wouldn’t even have a chance to get to the hospital, my partner had to call an ambulance on several occasions as he couldn’t get me out to the car. I would be given gas and air and that would take the edge off it but it was still unbearable pain. The episodes were taking longer to get under control and I required more and more morphine for it to work so when I was in hospital the pain clinic were called to assess me. This was a different pain clinic to the one I had visited previously. They arranged for me to see my original pain clinic again when I was discharged from hospital. When I went to my appointment she said that they wanted to take me off all the morphine I was on and take methadone instead as this was longer acting drug and may have more of an effect than the morphine. Because I have been on the morphine for so long I was needing more and more of it in order to take effect. I agreed and on my next admission to hospital they started me on a 5 day programme to assess how much methadone I would require. When I was discharged I now had to take 30ml in the morning and 30ml at night of the methadone. I was called back to the pain clinic a month later for a follow up but as yet the methadone had made no difference to my pain levels. I was told it was still early days as it takes a while for the methadone to build up in my system. I continued with the methadone but still got no relief with it and continued to end up in hospital with my episodes.

After 4 months of being admitted to hospital at the same it was clear something else was going and this wasn’t just the LPHS. My mum read up about endometriosis. I contracted my doctor and he wrote to the hospital to see if it was a possibility. The hospital sent me an appointment for a consultation. The doctor was very understanding and said because of how severe my condition was becoming the only way for a quick result was to put a camera in my stomach to see if I had it. Two months later I had the minor operation and to my disappointment it came back negative! I did not have endometriosis. I began to think maybe it was just the LPHS condition getting worse and this is how it was going to be. Always in pain, constantly being sick, bedbound most days if not in hospital. By this point I was not sleeping at night time at all, the pain kept me up all night. The doctor prescribed sleeping tablets but they did not work. I would get what sleep I could during the day but it wasn’t much. The less sleep I had the harder I found it to fight the condition and keep going. I was very weak and struggling to walk. My balance was affected and I kept falling over and down the stairs – I put this down to side effects from all the different meds I was on. I was getting hot and cold sweats daily that could make me feel worse than I actually was. I ended up having to use a walking stick to get around and a wheelchair for when I was really bad. It gave me some freedom back as it meant I could get out for fresh air, go food shopping with my partner etc. Social Services were called and they came out to my house to adapt it to help me get around my house more easily. They even installed a seat in my bath which would help me get in and out it without someone physically having to lift me out the bath. It gave me some independence back.

By May 2010 I was now being admitted to hospital every 2 weeks with my episodes. In July 2010 I was admitted to hospital via ambulance in a very bad way. After a week in hospital my condition was getting worse, not better. My face was fat and swollen, I was bruising easily, the cannulas were only lasting hours before my veins would collapse and they would have to put a new one in, my blood pressure kept dropping even though I was on a constant drip, being active by getting out my hospital bed every day, I had no energy, my heart rate was still 150 and I was still being sick and in a lot of pain. Luckily the doctor who was treating me had seen me several times in the past. He knew me and my condition well enough to know that something didn’t add up, I was getting worse after a week of treatment, not better. He took some bloods off me and decided to run tests for rare conditions. I also got cat scans and an mri scan. When the results came back he was very surprised to find out I had Addison’s disease. My body had shut down 93% and was told I was a very lucky girl as had they continued to treat me for LPHS I would not be here today to tell me tale. It is a hard condition to diagnose as its only when the body shuts down 90% it shows up. I was very poorly but at least now we had got to the bottom of it. I had a glimmer of hope that things would get better. They started me on the steroids treatment and I slowly began to get better. Two weeks later I was discharged from hospital. I was still in pain but it was bearable and the sickness seemed to be under control. As I had been in such a bad way they had started me back up on the morphine as well as taking the methadone. When I got home I continued to take the oramorph morphine as and when required as I was still in a lot of pain. I was now on a course of steroids for life and was told I should see an improvement. As it is a serious condition if I am unable to keep my steroids down I have to go straight to hospital for treatment. I felt relieved to know that it wasn’t just my LPHS condition getting worse, there was something else going on and hopefully now things would improve for me. I should be so lucky.

October 2010 now and my pain score is still 8/10 on average daily and the pain now affects both my right and left kidney. I am still sick on a daily basis and I am still having my regular episodes resulting in me being admitted to hospital. The only difference is before I would put off going to hospital for as long as I could. I could be dying for a week before I would eventually give up and go to hospital for treatment. Now however I do not have that option, if I am in a bad way for 24 hours then I have to go into hospital for treatment, I can’t afford to hold off. I have since went back to the pain clinic and asked if I could be given pain med injections such as buscipan, my reason being, as I am sick regularly there are times my pain med tablets don’t stay down so it’s no wonder I am in as much pain as I am in. The only thing that stops my sickness is when I am in hospital and being given my pain meds through the cannula, directly into the vein. This controls the pain therefore in return settles the sickness. It’s a vicious circle as I am sick because I am in pain but the more I am sick the sorer I get. The pain clinic told me this was not an option as they do not treat chronic pain with pain med injections and also the injections give you ‘a buzz’. She was unable to suggest anything else to treat my pain and was told to continue with the methadone even though it does not do anything for me and my pain. The only thing she said she would do is write up in my hospital notes that I do not have to be admitted to hospital when I have an episode, she is happy for me to be treated in A&E then be discharged home as opposed to being admitted to a ward for further treatment. I got very upset, had she bothered to treat my pain then I would not have to go to hospital in the first place. I have since seen my GP who is now in a position as she has said no to giving me injections therefore he is unable to go behind her back as such and prescribe them to me. I have since made clear that I will not be going back to the pain clinic and will only deal with my local GP and hospital when I am admitted. My GP is brilliant and is still trying to find something that will help me. I am with the help of my mum looking into possible treatments and different meds including injections and will fight to get the treatment I need and deserve.

I thought things would get better now I am being treated for Addison’s Disease but it turns out having two rare kidney conditions only complicates things.

December 2010 and things just keep getting harder. I made the decision to come off the methadone as I was still having to take the morphine which really defeated the purpose of going on the methadone, not to mention it never done anything for me! I cut down myself from 60ml to 30ml before I consulted my doctor who said I need to cut down by 5ml every week. I made it to 20ml before running out of methadone so decided just to go cold turkey!!! never again, I am now going through hell with the withdrawals. Constant hot sweats that are so bad I am having to change my clothes 3-4 times a day, I’ve got the shakes, headaches everyday, constant sickness that is so bad I am eating and drinking very little and because I am so restless I am not sleeping well at all! I thought it would get easier with time but I am now 3 weeks off it and the withdrawals are just getting worse. The doctor increased my other meds in an attempt to reduce the withdrawals but with no success! I’ve gained 3 stone in 2 months which is gutting, especially as I am getting married in April. I went to the wedding shop to get re-measured to make sure my dress would still fit as my engagement ring had to get enlarged by 4 sizes. I have gone up 2 dress sizes so my wedding dress that has been ordered no longer fits. I spent most of the day in tears. The wedding shop was great and said they would do what they could so that I get the dress I want and one that fits in time for my wedding which is great but the happiest day of my life I am now dreading as I feel like a whale because I’ve put on that much weight thanks to all the medication. The last thing I want is pictures to remind me of how big I was on my wedding day.

I am also dreading wither or not I will last the big day. I don’t want to ruin David’s day by having to leave the reception early because I am in pain and worn out, I want him to enjoy the day too and not have it cut short because of me. The one thing I really want is a honeymoon and I am now doubting wither or not I will get away. I have spoken to the doctor and requested a nerve block for the wedding. He has put me in touch with the pain clinic but someone completely different who I have not seen before. By having the operation my hope is I will be able to last/enjoy my wedding day and even get away on my honeymoon. The procedure is only a temporary fix but I will be more than happy for it just to see me through they couple of weeks, if it doesn’t completely work I would be more than happy if it just reduced my pain level to 5-6 or even 7/10 – that I could handle!!

Well 2010 has been by far my hardest year to date. I have spent 90% of my year in hospital and the longest I managed to stay out for was a whole 2 months which was October to December – I ended up in again just before Christmas for the 3rd year in a row now! I have been in hospital every month this year, sometimes 2 or 3 times in a month. The pain continues to get worse in both kidneys along with the sickness and now with the withdrawals from the methadone I just feel terrible 24/7. The most I manage to do is my weekly shopping at Asda which kills me the next day. I could get out more if I used my wheelchair but I just feel stupid in it so would rather walk with my stick and struggle along.

I am a determined person who does not like to be beaten. Although things may be hard for me it’s a rare occasion you will find me moaning about it as there are people out there a lot worse off than I am. Although times are hard I have great support from my family, friends and my partner. I am getting married in April 2011 so I have something to work towards to try and get myself better. I feel I have done extremely well to have worked for 8 years with this condition and hopefully in the future I may be able to work part time again. I may be down but I am not yet beaten, lets hope 2011 is a better year for me and my family as I know they are very stressed by it all.

Main Side Effects of condition/medication

HOT AND COLD SWEATS
VOMITING
DROWSY
FAST HEART RATE
CHEST PAINS
PANIC ATTACKS
LOSS OF BALANCE
NO ENERGY
ITCHY

UPDATE – June 2011

Well I managed to talk my pain clinic (but a new doctor this time)  into getting nerve blocks done for my wedding to help with the pain so i could last the day, got both kidneys done just the week before my wedding and to my dissappointment it didnt work and i somehow ended up in more pain than i started however the pain is a different pain and now runs down the tops of my legs too making it hard to walk far or for long.  Although in alot of pain i managed to survive my wedding day with alot of help from my friend morphine and have a lovely day!  I even managed a week’s honeymoon in turkey although i am still recovering from it but it was worth it.  After a terrible hospital addmission which left me in agony for 5 hours without any of my proper meds or even morphine despite continously asking for it (all i got given was 2 paracetomol which is a massive slap in the face when your on the kind of meds I am, i take morphine hourly in the house so to not even get that was a total joke) i had no other option but to dishcharge myself, go home and take everything and anything i had, doubling doses in order to treat my pain (something i would never encourage anyone to do but for me drastic times called for drastic measures).  My dad complained which i dont usually let him do but after 10 years of this sort of thing, 5 hours was breaking point for me, i had enough and i wasnt going back into hospital until my treatment was sorted and everyone knew how to treat me!  We had a meeting with the hospital and they have assured us there would be changes put on my record, just because im not rolling around kicking, screaming and crying doesnt mean im not in alot of pain – ive just had 10 years of it and now can handle things abit better despite being in alot of pain.  There should also be a set plan on how to treat me, what to give me and an added note telling them not to mess with what they dont know when it comes to my meds – only the pain clinic or my doctor can change the pain meds. Still delaying going to hospital as been really put off after my last visit but learning from my mistakes i would recomend people to complain each and everytime we are treated poorly, left in pain when not given our regular meds or something stronger – if we dont complain then nothing will change and we will continue to be treated poorly which makes us more and more reluctant to go into hospital when we really need to be there for proper treatment.  The quicker we go into hospital, the easier it is to treat and the quicker it is to get back ontop of the pain so we can go home again.  If your anything like me, the longer i leave it, the worse my pain gets so it gets harder and longer to get back ontop of the pain which means a longer stay in hospital.  should really take my own advice but at least i learn from my mistakes and i just hope others dont make the same mistakes as i did.  Just remember no matter how bad it seems, keep your chin up and stay strong, theres always going to be someone else out there worse off than we are.  For me, stress can make the pain worse so dont stress about the small things, they always sort themselfs out in the end!

I HAVE NOW SET UP MY OWN WEBSITE ON LPHS – IT HAS EVERYTHING YOU NEED TO KNOW ON THE CONDITION INCLUDING DOCTORS ARTICLES, TREATMENTS, STORIES AND LINKS TO VARIOUS SUPPORT GROUPS.  I HOPE YOU FIND IT HELPFULL X

10 thoughts on “10 years living with LPHS”

  1. My husband is 43 and has been diagnosed with LPHS. Im horrified to read your story and my heart goes out to you!! I can only hope that my husband can find some relief from the medication he is on as we are only 3months in to what seems like a very long journey!x

  2. I was diagnosed with LPHS yesterday (18 April 2011). I look forward to joining your website and learning all I can in dealing with my new reality.

  3. thanks dee, if you need anything just write on my website http://www.livingwithlphs.co.uk and i will get back to you asap! all the info you need on the condition is on my site, you should find it helpfull being newly diagnoised. its a long journey but you will get through it with the help and support of everyone in the group.
    PLEASE NOTE EVERYONE THE WEBSITE IS NOW LIVE SO THE WEB ADDRESS IS
    http://WWW.LIVINGWITHLPHS.CO.UK
    if you leave a comment on the site i will get back to you asap.

  4. Dear Carol,
    Your site is fascinating and yet full of too much pain for one so young. Just wanted to share my experience(s) with you.
    In 2008 I lost my left kidney to a congenital vascular dissection. Within 9 months of the removal of my kidney, I began to experience severe pain and hematuria with my remaining kidney.
    I have been sent from one doctor to another for almost three years until my latest episode in May of this year. The ER doctors kept sending me to Nephrology for consults, but they never seemed to think it was anything too serious, since they could not find any blockages.
    Finally, after my last visit to the ER, I met several doctors from the renal clinic and they performed several tests on my right kidney (after admitting me to the hospital). I also found out that these tests should have been performed before I ever left the hospital after losing my left kidney in 2008. The tests results were good and bad. Good news: I do not have the same defect in my right kidney – Bad news: I was diagnosed with LPHS. The I had never heard of this syndrome and have done nothing but research it since I returned home from this last trip to the hospital.
    At this time, the doctors are telling me that they can only treat me with pain medication(s) and admit me to the hospital for the more serious episodes. While I am not happy about spending even more time in the hospital, I am grateful that I am not on dialysis or a transplant list.
    I wish you the very best and hope for a brighter future as you continue to learn about this rare syndrome.
    Good Luck,
    Michele

  5. Hi michelle,
    I have replied to you via email, i hope you found the website helpfull and wish you all the best in your treatment with LPHS. Fight for your treatment you need and deserve and dont live your life in this much pain x

  6. I AM DOING MY PART TO HELP RAISE AWARENESS BY USING MY LPHS WEBSITE,

    TO HELP RAISE AWARENESS ON OUR CONDITION PLEASE SHARE THE WEB ADDRESS LINK WITH DOCTORS, FAMILY AND FRIENDS TO HELP THEM UNDERSTAND WHAT IT IS FOR US AND HOW IT AFFECTS US.

    THE MORE PEOPLE THAT LEARN ABOUT THE CONDITION WILL HOPEFULLY BENEFIT US IN THE LONG RUN SO PLEASE SHARE THE WEB LINK –

    http://livingwithlphscouk.fatcow.com/

  7. Dear Carol/other LPHS Sufferers
    My diagnosis of LPHS occurred in April of ’09. I had been suffering undiagnosed since my pregnancy in ’07. Multiple hospitalizations, no meds due to the pregnancy.
    I must say, your story reads as my own since, however without the easier access to Dr.’s and pain management. I was even labelled as ‘med-seeking’ at my local hospital.
    The Dr.s’ there always look down their noses at me as though I’m crazy, faking or drug-addicted. My nephrologist even wrote a detailed letter including diagnostic info for me to take with me to the hospital. To no avail!
    I have stopped going, I now suffer and stay home, many, many times I would have an attack lasting hours, and be almost over it by the time I would see a Dr and only then would they want to begin treatment.
    I was shocked to see that you also experienced the bloating- I look like I’m about to pop, or have a baby. My Nephrologist even was at a loss for this occurance, saying it had nothing todo with the LPHS! Then what is it, I said? But you experience it too, so it’s related, obviously.
    The rest of your story, identical to mine! I only wish I had a crystal ball to tell me this was coming, so I could have done more with my children (5) and husband. Now I feel our lives revolve around me, what I’m able to do and what I’m feeling that moment…it’s sad. I’m sad, sometimes I feel they would have more of a life if I weren’t in it any longer.
    Is there any hope for a pain-free life? I am troubled with the lack of investigation. I found the nephrologist I dealt with wanted nothing more to do with me as soon as I was diagnosed. She even went so far as to say I needed to accept my ‘lot’. Pain management clinics only want to experiment and don’t seem to understand that I cannot NOT go without pain meds-I would die…I’ve given birth to 5 children, had c-sections, and would rather do that med-free, than endure yet another kidney attack.
    I would love any advice you have on helping others understand…they don’t seem to get that I can be relatively ok for a spell, then suddenly double over in excruciating pain with nearly no warning. I also pass out, a lot, and scare everyone. That is why I am now on CPDB and my LTD from my job as a special needs teacher. Passing out in front of the children is frowned upon.
    You don’t mention it, but I have lost a ton of weight, nearly 90 lbs, and vomit all the time due to pain, or sudden waves of nausea. I’m chronically exhausted but can’t sleep long if at all. I freeze out the house being hot all the time, no explanation…The whole thing sucks! Who do we turn to, what do we do? My Dr. Refuses to give me a referral to another Dr. Or to further investigate. I think I may also, have Addison’s, but no one will listen.
    Any info is greatly appreciated.
    Laura

  8. He people,

    My name is Samuel i’m from Holland and I am posting this in behalf of my girlfriend Wendy.
    She is 22 years old and no different than all of you she has bean going to a hell the last 7 years!

    In these 7 years she has been operated 5 times to control the endometriose. The doctors suspected the paint to come from this decease she was diagnosed with although she always showed the doctors that the pain was coming from her kidney (mainly on the left side).

    She is in the hospital now as we speak and they told us yesterday that it might be something like LPHS but there is no cure fore it and I’m guessing no doctors in our small country that know how to treat it.

    We are not giving in…we are not accepting them to sell there morphine and other pain killers to us instead of finding a way to cure Wendy.

    Pleas help us find a good doctor in England so we can find a solution to this all
    and give Wendy back a bit of youth she has mist out on!!

    Thank you for reading my crappy English righting.

    Wendy and Sam

    1. In England, dr al-kaisey deals with the most lphs cases and is based in London. U will find him on google, he’s a top pain specialist doctor. Hope this helps x

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