Chronic Prostatitis (CPPS) and Claiming benefits (UK)

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Hi everybody,

Today was the day I knew would come where my Urologist ended my treatment and explained there is nothing else they can do for me.

I have had so many antibiotic courses, scans, 2 cystcopys and specialist meetings over the last year and still in extreme pain every time I urinate or sexually active.

The Urologist has prescribed me more tamasulin and Doxy and told me to basically live with it.

I have always been in full time employment with local councils but since my diagnosis a year ago I have had 5 different jobs and now work 20 hours per week due to the pain. I have two children under the age of 2 and a mortgage and struggling.

I was wondering if anyone is claiming benefits for prostatitis or CPPS or could tell me if it is even possible? Any help would be greatly appreciated.

Also if anyone has any advice on natural remedies to help with pain would be a huge bonus.

Thanks in advance

Danny

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16 Replies

  • Posted

    Not sure. Are you in an area where Universal Credit has been rolled out? You can go online and use  The  Citizens Advice Bureau checker / calculator. If not,  could you go to your local Citizens Advice Bureau office? - they should be able to tell you.
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  • Posted

    Hiya mate ,

    I don't doubt You're having a problem mate.But when doctors shrug their shoulders, which I've had in the past ,then maybe it isn't so much of a doctor fix problem but a self correction problem .

    After 60 years and having had peeing problems since I was very young (and errectile dysfunction as well).

    I started to have a serious look at my diet .Primarily sugar .I definitely think it's worth backing away from .Maybe It's not the answer but then , maybe it is.

    There's obviously nothing clinically repairable with you (not unless you have a crap doctor).but There is something wrong .So rather than add to your intake i.e medication etc ,then try to deduct things from your intake .

    It's only an opinion bruv, but worth having a think about .

    Hope my words help .good luck with it.

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  • Posted

    I had stubborn bouts of prostatitis until my 40's and then it seemed to go away for the most part. You've done a lot, maybe just give things a rest for awhile and treat symptons. I found sitz (hot water) baths helpful.

    Jim

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  • Posted

    Thanks for the replies, I really appreciate it.

    I think you are both right. I really do need to start looking at my intake if things are going to change. I drink way too much coffee and crap foods. I have just signed up to a gym to get my fitness back on track, it has just been so hard since being diagnosed as depression and anxiety has stopped me from doing anything. But now I guess it has to be on me.

    Only time will tell I guess. It has just been a horrible time which I am sure you all have experienced. Having 2 under 2s hasn't helped my sleep or stress levels too now that I think about It!

    But thanks again. Now to get this diet and natural pain remedies research in check!

    Take care

    Danny

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    • Posted

      Hey Daniel.

      Yeah , when the chips are down It's so easy to follow the downward spiral .

      Your prostate represents your core health , it already goes through the wringer given what it is and does .So anything you do to take care of it is a good thing .So look after yourself first mate , your family is counting on it .

      Best wishes

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  • Posted

    Hi Danny, I posted on this subject a while back- https://patient.info/forums/discuss/bladder-neck-incision-and-prostatitis-610875 - and some if it might be relevant to you. I too felt like I would have to take time off work and I also, like you, reduced my hours - easier for me as I'm self employed. My current uro has been great but I have often wondered when he was going to tell me he's done all he can! The bladder neck incision I had last autumn seems to have really helped. Apart from relieving a tight bladder neck, my uro thought urine was getting forced into the prostate and irritating the bladder. Antibiotics never worked for me at all. My symptoms now have pretty much disappeared after almost 2 and a half years. Had prostatitis in my early twenties too and eventually it went for 15 years!! In my other post I've linked to above, I mention a relaxation CD. I found this helped quite a bit as prostatitis can be exhausting to deal with. I downloaded it from a pelvic floor relaxation website in Australia and I've used it dozens of times. I'm sure too that quercetin and bromelain helped, plus pumpkin seed oil and saw palmetto. Also, my uro did a prostate massage under a general anesthetic and that gave some relief. Hang in there. As another reply has suggested, often trying things yourself can eventually sort the problem. There are endless things to try - pretty much anyway - so I just kept reading and searching the Internet to see what might be worth pursuing next. Regular ejaculation is also something my uro recommended and I can see the logic in that! Luckily I have a very sympathetic wife! Good luck mate - I hope some of these suggestions might help.

     

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    • Posted

      Hi Nick,

      Thanks for the information. My Urologist has been quite shocking really. His end line to me yesterday was 'You probably know more about Prostatitis than me'. Not very assuring.

      I have looked at the things you suggested and will pick up some at the weekend so thank you for that. I am desperate for some kind of let up or relief in these symptoms. Like many here I can imagine, I have forgotten what it feels like to be 'normal'. My pains seem to be the worst straight after urinating and get the 'dribbling' regularly throughout the day. Urine flow is also a problem.

      But with your tips I am feeling a little more positive. We will see how it goes smile

      Funny enough I have just been offered a full time job today so need to focus on changing my outlook, accepting this condition is here for the long haul and change what I am putting into my body like others have suggested.

      Ah I will also look into the guy you mentioned on YouTube and relaxation music!

      Thank you again.

      Danny

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  • Posted

    I was told to live with it too Danny by many uros I saw when I had prostatitis in my twenties. One uro refused to see me anymore!! Don't live with it - just leave no stone unturned and something will eventually help. Most uros do agree it eventually burns itself out anyway. Re the music, search for patricia neumann. I downloaded it for about ten quid. Make sure you get the one for men as there's one for women too! You want pelvic floor muscle relaxation for men. I was sceptical at first but I used if midday before I headed off for work. As you probably know - there's a lot of people saying non-bacterial prostatitis can be at least exacerbated, if not caused, but problems with pelvic floor muscles. My uro has told be stress makes prostatitis far worse, so trying to relax can really help. Hope you get some relief! Re the herbal items I mentioned, no names allowed on here, but I used ones that start with swan and end in son! You need to get a reputable make and a decent strength. I've just been taking them again for a tescticular pain I've been having for the past five months, along with pumpkin seed oil. It may be a coincidence but a month later, I'm feeling a lot better. I've also joined the local gym as I read some research recently saying that men with prostatitis who used the gym regularly for 3 months felt significant improvement - some 50%+ of them anyway. All ideas, but, as i said, there's so many things you can try so there's always hope! Don't believe the uros who say you'll just have to live with it!! All they're saying is, they personally don't have a clue what to do next!

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    • Posted

      I like what you did there with the herbal items :D

      I have also just signed up to the local gym so can get my fitness back on track anand stress levels (2 children under 2 are a killer!)

      I will keep you posted on how I get on and hopefully with the new herbal stuff starting at the weekend I can spin this around smile

      Thank you again

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  • Posted

    Hi Daniel,  I hope you don't mind a female joining in.  All these replies seem to be saying the same thing, which I fully agree with, that exercise is probably the way to go. Not at the gym but special exercises for pelvic pain.  A study showed that just 6 days of these exercises eased CPPS in most of the men who took part.  It is a fact that stress and tension in men often shows up as pelvic pain rather than as headaches in women (something to do with the location of the brain?!!). 

    Search for these exercise.  There's videos on the pelvic pain clinic in London (I can't give any links).

    You say you took a lot of antibiotics - so can I guess you had 4 weeks or so of Ciprofloxacin?  If so, is your pain only in the pelvic area or do you get anything else?  If you look in these forums, especially at the fluoroquinolone antibiotic pages, you'll see that, if you've already had lots of Cipro, you really should never take any any more (or any other fluoroquinolone) ever again as you may get hit by a range of side effects you've never imagined possible.  This is a fact - not a scare tactic!

    Do you take any pain killers?  Make sure they are not Ibuprofen or any other NSAID also don't take steroids.  If you've had Cipro but no side effects yet, Ibuprofen can just kick things off - up to several months later! 

    If you haven't had Cipro, all well and good - but maybe don't take it in the future then.  Stay safe people, these are dangerous chemotherapy drugs, not really antibiotics at all!

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    • Posted

      Hi Miriam,

      I have had 3 courses of Cipro (4 weeks a time - 1000mg a day) and 3 courses of Doxycycline (200mg a day). There have been a few more courses before these which I can't remember the names of, but as there failed I was moved on to Cipro which also hasn't worked!

      I have always taken ibuprofen and paracetamol running alongside these as was told to take painkillers to help?

      Also mixed in with all of this! To cut a long story short - in the early days of my pain the first Urolgist I saw didn't run any checks on me at all and told me all of the pains I was experiencing were in my head. He then diagnosed me with anxiety and depression and threw me on Sertraline and then Certilapram. It was only 3 months later after countless visors to the GP that I was referred again to another Urologist who ran all of the checks (urine flow, ultrasound and rectal exam) that they realised there was a problem, gave me my diagnosis and then removed me from the antidepressants!

      I have so many symptoms to be honest ranging from poor urine flow, pain at tip of penis after urinating, stomach and back pain and this nasty 'dribbling that looks like a mix of urine and semen for some strange reason (sorry if too graphic). Again these pains appear after sex also.

      It is quite scary reading your post! I seem to have been running ibuprofen alongside Cipro for so long. Strange thing is when I had my Cystcopy I was told I have a very large spleen. All blood tests came back clear or so I thought. 2 weeks after being given the clear I have just received a GP phone call booking me in for an urgent appt regarding results on my spleen. It all just seems so up in the air and has been very disorganised when dealing with both the hospitals and doctors. I feel I have been shunted from pillar to post and my symptoms downplayed the whole way through this ordeal.

      I may need to look into the relationship between large spleen and prostatitis. Or maybe all of the meds I have been taking have taken their toll. Hopefully it's not something more sinister....That would be all I need!

      Thank you for your post

      Danny

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  • Posted

    Just a quick update. I have been to doctors about enlarged spleen and they tell me my recent blood tests have come back with a 'weak positive' for antinuclear immune disease. I haven't a clue what this means but am waiting to be referred to haematology. My spleen is 3 times the normal size. GP states that my enlarged spleen and Prostatitis are unrelated. So the doom and gloom gets worse I guess.

    Danny

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    • Posted

      Many things such as infections can cause an enlarged spleen - you can look it up quite easily.  Your doctor is right in saying it is most likely unconnected to your prostate problem but it can be connected to the large amount of ciprofloxacin you've taken.  Cipro creates havoc throughout the body and caused many changes in the cells - the spleens job is to tidy things up so it may be that yours has been overworked trying to cope with the Cipro damage.  I'll have a look at what "antinuclear immune disease" means but I've got a feeling it may well be to do with the Cipro as many or its symptoms are very similar to those of other immune diseases.  Citalopram is something else I don't recommend with Fluoroquinolones (because they both contain fluorine molecules) so that may not have helped.  Sertraline is ok though so it's not all bad news! 

      I'm so sorry if I have been the bringer of the doom and gloom messages.  Given the amount of Cipro you must have taken you are doing amazingly well so I sincerely hope that things don't get any worse for you and they sort out your prostate problems.  Please don't be afraid to refuse any more Cipro or its relatives (say you're allergic to all fluoroquinolones as just one more pill of any of them may be one too many).  Ditto the Ibuprofen and all NSAIDs and steroids - better be safe than sorry.

      Please post when you've had your haemotology appointment - message me if you like.  I suggest for the time being that you eat 'clean' (.e. no sugar, chemicals or junk food) and don't drink alcohol, this might help your body deal with all the meds you've taken so far.  Take care!

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  • Posted

    Hi Daniel,. Take some probiotics. Cipro kills your gut bacteria.
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  • Posted

    Hi Danny,

    I did look up about the antinuclear immune disease bit and it's a test that may suggest the beginnings of things like lupus or rheumatoid arthritis - things where the immune system starts to attack your own body.  Apparently some medications can give these weak positives and it's probably nothing to worry about as you've had a lot of meds.  The haematology people will probably test it again - I am willing to bet the enlarged spleen and this will be connected. 

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    • Posted

      Thanks Miriam.

      It has been worrying to be honest, so that is good to hear. I spoke with GP yesterday who also told me that all of my meds will probably be the cause of the weak positive. He also said that all of my other readings were fine so should be nothing to worry about. Just need to wait for hematology appointment now to pin point it.

      I appreciate your help smile

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