LPHS – Entering My 18th Year. Will This Ever End?…

Hi, my name is Robyn but my friends call me Cutsnake. They started calling me that when I was a teenager as I was ‘mad as a cut snake’… However, things have changed alot since those crazy days.

When I was around 20 I was diagnosed with LPHS after having spent the previous 6 months trying to find a Urologist or Neurologist who could tell me what on earth was going on with me. I was passing huge amounts of blood in my urine (which was so full of blood that it looked like red wine), and in so much pain that all I did was roll around the bed crying and calling out in pain.

FINALLY, I found a neurologist who diagnosed me, and although he advised me that it was unknown at that time as to what actually causes LPHS, he did tell me that there had been some data which indicated that a reasonably high percentage of the very few people worldwide who have this disease, had at some time during their childhood been on various types of antibiotics (IV) whilst being in hospital. Sure enough, this jived with my history….

When I was 6 yrs of age, I was burnt in a fire and spent 4 months or thereabouts in hospital, having a particular antibiotic running through my drip. This antibiotic has now been shown to cause kidney and liver problems in children, years later, and is therefore no longer recommended for use in children (and when used in adults, only if regular blood tests are undertaken to test for toxicity – particularly given the antibiotic itself can cause kidney and liver failure). The antibiotic I speak of is called Gentamicin.

Anyway, the crux of the matter is that I have now been living with LPHS for coming up 18 years. My life (or existence)is pretty miserable. The pain itself is the debilitating part of the whole thing. Of course I’ve been on huge amounts of opiates for the duration, and I guess I am now what you’d call an addict. No, I’d be really really crook if I were to stop taking my painkillers abruptly, but they no longer narcotize me (I don’t go on the nod or anything like that) – but rather, just help to control the pain.

LPHS has destroyed my life in a lot of ways, although probably because I let it do so. It is very easy to become depressed when you have a chronic illness or pain problem. Although my GP and kidney specialists all tried to get me to deal with my depression, I didn’t do anything about it myself until I was just about ready to ‘end it all’.

Obviously, my partner of 15 odd years got sick of seeing me in pain all of the time, and got sick of never being able to just go and have a night out without having to worry about whether I’d be too sick on the night to be able to go, and so he just ended up packing his bags and leaving me with our daughter who was only 6 at the time. She’s 9 now, and the light of my life. Without her, I don’t know what I would have done.

But, by him walking out, it forced me to have to deal with my depression, because I knew if I didn’t, I’d be consumed by it and then there would be nobody to really take care of my daughter.

I guess I’ll now be on antidepressants for the rest of my life, and although that doesn’t sit well with me, I guess its better than the alternative.

We are learning that although I’m in pain and really unwell most of the time, that we can do it, and we can be happy while we are. If I hadn’t had my daughter that I had to care for, I think I’d have just given up and spent ALL of my time in bed or on the couch, rather than just the significant amount of time that I was.

No, I’d love to be free of LPHS, but I’m guessing that’s just a fantasy and I’ll just have to live with it for the rest of my life. Yes, I am sick of being sick all of the time, but what else am I going to do? It’s pretty much out of my hands.

What I can say though is that despite how scary it all was at the beginning, once you actually come to terms with whats going on with your body, and you learn to work your life around your disease, you can cope, you can thrive. The trick is NOT LETTING YOUR DISEASE BECOME THE FOCUS OF YOUR LIFE. If somebody had told me 5 years ago that in a handful of years my lifelong partner would have hit the road and left me with a young daughter to care for all on my own, whilst I was in extreme bad health, I’d have laughed in their face. Well, now I’m doing it, and despite it all, I’m doing okay.

My neurologist and pain specialist are looking at putting an intrathecal morphine pump into me within the next 12 months, and I’ve got to admit, that although I’m really scared about having the surgery (and about something going wrong whilst I’m on the table), I’m actually looking forward to it because they tell me that it will significantly reduce the amount of morphine that I’m having to take because the morphine will be going straight to the site that is causing the pain (the nerves around the kidney), and that I will be receiving the best possible control of the pain. The only drawback is that I’ll have to keep going back to the hospital and getting the reservoir filled up with more morphine every couple of months. I guess that’s a pretty small drawback in the grand scheme of things.

All I can say is that I hope the rest of you people out there in cyberspace who are going through the dramas of living with LPHS or worse still, trying to find a doctor who can diagnose you if LPHS is your problem, that you actually find a doctor who if they don’t know whats going on with you, send you to somebody who can sort you out and get you onto a regime or program that can help. Although I’ve got great specialists on my ‘team’ now, I had to see a whole lot of quacks before I found them.

I hope your not having a really bad day with your pain….believe it or not, today is probably the best I’ve been in the past 3 months. Anyway, I’ll sign off. I hope this ‘my story’ has helped somebody out there who is going through this.

By the way, if you want to reply to my email, feel free. My email address is [email protected].

Catch you later.

Cutsnake

6 thoughts on “LPHS – Entering My 18th Year. Will This Ever End?…”

  1. Hi Cutsnake

    I also have LPHS. Thanks for your post, your positive attitude really inspired me. Tomorrow is my last day as a paid journalist, my employers have finally let me go – I haven’t been able to work properly for a couple of years because the pain and opiates stop me concentrating. It must be really tough living with LPHS and bringing up your daughter alone.
    I had an uretic stent fitted recently which has helped a bit. It’s a flexible wire coiled at each end that reaches from the kidney to the bladder. But much to my family’s despair the best pain relief comes from Oxycontin and Oxynorm.
    My great pain specialist discovered that the loin pain stems from my loin muscle being in constant spasm.
    I live in the UK and have also faced my fair share or quacks, including a phsycologist who suggested my weight (gained post illness) was probably the cause.
    I’ve been in hospital at least 4 times recently with severe bleeds, so I’m praying it doesn’t happen again – British hospital food is BAD.
    Hope your treatment goes well.

    Rachel x

  2. To Rachel and all… Thank u so much for mentioning the loin muscle spasm. I get spasms so bad it drops me to my knees. Wwhen the spasm is over it feels like someone has just punched me full force in both kidneys and is sqeezing them as hard as they can. This is a very important piece of my illness. Anyone else out there experience this?? Please please let’s start comparing data.

  3. I found this post because I typed in Google, spasms so bad it feels like I’ve been punched in the kidneys.. I get the spasms more often now that I’m 54.. thinking it is from doing exercise..but I’m not sure. Luckly, I don’t have blood in my urine..but have a lot of pain in the left hip/kidney area. Hurts to walk..I get a spasm so bad I’ve almost fallen..can barely sit down or get up..and having to lay in bed is almost impossible. I have to try to roll into it. My mother n law, gave me some Robaxin but honestly, it doesn’t do anything for the pain. Last night I took some old Vicodin (2) and because it is over a year old it didn’t help that much.. I swear, I feel like someone just punched me in the kidney. Constant throbbing.. I may not have LPHS, but I feel for you guys.. I wish I had medical insurance so I could see what the heck is going on..
    Linda

  4. Hello Ladies,

    there is a very active group of LPHS sufferers on Facebook called Living With LPHS. Please check it out and see if you’d be interested in joining. People post questions, share experiences, doctor contact info., etc. I hope you are having a low pain day.

    Renee

  5. Thanks , I’ve just been searching for info approximately this subject for ages and
    yours is the best I have discovered till now. However,
    what concerning the conclusion? Are you certain about the source?

    1. I’m not sure which “conclusion” you are talking about, and what “source am I certain about”, so I will do my best!

      The surgeon who was going to put my morphine pump in got cancer and stopped practicing, so I had to try and find another surgeon who would do it.

      Unfortunately this hasnt been easy – they all want to re-try all the things that havnt previously worked. Grrr…. I ended up with a pain specialist/neurosurgeon who wanted to try a new high-frequency stimulator with electrodes going straight into my spine, and the battery back under the skin (in the meaty part) of my butt cheek. Very strange sensation and not particularly helpful. Spent 18 months getting programmed and reprogrammed in an attempt to get the right amount of electrical stimulation to interrupt the pain signals, on the right area. What a bloody nightmare! Clearly this didnt help me, but by then there was a new stimulator on the market that works at a lower frequency in hertz cycles, and of course, he wanted to try that too. Another $70,000 paid out by my health insurers (they must hate me), but this one actually made me worse.

      Last month he agreed to put the morphine pump in, and I am currently awaiting a surgery date. Fingers crossed it comes soon!

      As for being certain about the source of LPHS? This was a statement made to me by two nephrologists (kidney specialists – not neurologists – original post autocorrected nephrologist to neurologist). At that stage, LIMITED STUDY AND PERSONAL EXPERIENCE had shown that on the limited number of people who had been diagnosed with Loin Pain Haematuria Syndrome, A RELATIVELY LARGE AMOUNT of these patients had been exposed to Gentamicin during childhood. Whether any further study has been done, I could not say.

      I hope this helps and that I have correctly addressed your queries.

      Regards Cutsnake.

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