I've suffered pain now for awhile. cant take much more

Posted , 6 users are following.

Hi All,I'm new to this forum but I am on the IBS forum.

Ive been told my pain is IBS,but I'm still a bit doubtful,even though ive been through all there is,including diets.

why I doubt it ,is because the pain is always in my pelvic area,every minute of every day. As the day goes on the pain gets more severe.

Its also like having a baby kicking all day,only more extreme.

has anyone got any suggestions,or feels the same.

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19 Replies

  • Posted

    Hi Norma

    Sorry to hear of your pain and frustration. Perhaps if you describe a few more symptoms then more people will be able contribute to pointing you in a helpful direction.

    The one that I picked up on was that you say that the pain gets worse down the day. My own experience of pelvic pain was diagnosed as Prostatitis (yes I'm male but bear with me). However prostatitis is a catch all phrase for a lot of different conditions many of which are never identified. The Medical proffession are increasingly using the term Chronic Pelvic Pain Syndrome instead.

    One of the possible conitions is due to nerve damage. In some cases it's a Pudendal nerve problem. This nerve runs from the lower spine through a canal in the pelic bone and branches to many organs including bladder, bowel and genitals. Damage therefore can irritate any of those areas. It is quite difficult to diagnose this condition and it is initially done through exclusion of other possible conditions such as infection.

    However there are a collection of symptoms that should raise the question that pudendal nerve damage is a suspect. These are:

    Pelvic pain that worsens over the day.

    Pain in the perineum that makes sitting very uncomfortable (but not quite so bad on the toilet seat}

    There are potentially many other symptoms - change of bowel habit, genital pain, bladder fullness to name a few. The trouble is that these are symptoms of many other conditions too.

    Pudendal Nerve damage often has an identifiable root cause. A physical accident or even child birth. These might not initially be a problem but if you are seated and  under tension for long periods of time then that initial damage can get aggravated and at some point the nerve will trigger haphazardly. Settling the nerve is quite difficult.  Vigorous exercise seems to worsen the state. It tallies with the symptom getting worse down the day - we are usually more active then.

    If you think these symptoms fit yours then do look up Pudendal Nerve Entrapment PNE and other Pudendal Nerve Conditions. Of course you need to be wary of making your symptoms fit what you read.

    For me - my GP put me on 28days of antibiotics for prostatitis. It had no effect. I self diagnosed my condition as it fitted cause (lower back and pelvis  damage) and symptoms almost exactly. I was in quite a dark place with the pain for 3 months this year until I came across PNE etc A lot of rest / lying down flat has been my solution. I am about 80 - 90% better after a further 3 months 

    Good luck with your research and don't give up.  Richard

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    • Posted

      Thank you very much Richardd,for all that information.

      I will look it up because the pain is mainly when I'm sitting with my legs up.

      Can I just ask you does the pain go when your asleep?

      I always put the pain down to getting worse as the day goes down to food,but you are right about if I am on my feet to long,gardening,or even just chattering with friends.

      But thank you for taking the time to type all that for me to look up.

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    • Posted

      Hi Norma - you are welcome.  Perhaps it might help others too.

      In the early months the pain was always there but it  rarely stopped me sleeping and didn't seem to wake me.Usually the level of pain slowly dropped as I rested and by the morning it was less noticeable. Then it built up again through the day.

      Your diagnosis has been IBS.  I know little about that but from what I read it seems to affect the stomach and upper digestive tract more than CPPS usually does. There are seem to be quite a few conditions that give similar symptoms.  Endometriosis is another classic. That's something else I am familiar with through family. 

      I don't think it will harm to self treat PNE/PNN because it involves resting, keeping the body aligned straight and avoiding vigorous execise at the hips level.. I lay on a mat on the floor for hours and avoided sitting. I still do when convenient. Tricky though if your work demands long periods at a chair. For me it took a few days to start improving.  It was slow and there were set backs but for me I am sure it has worked. 

      It is important though not to give up on the GP. I am a bad example of that but I had enough conviction in my theory for my problem.

      Richard

       

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    • Posted

      Thank you Richard,I will look into it especially since you say it don't wake you.That makes it sound more like what your talking about.

      As for doctors I've had my fair share of mistakes they've made with me and my hubby. 

      Ive got life threatening health problems that don't cause me this much pain it's simply took over my life.  Because the pain is in the pelvic area that's what made me try this site.

      But when it comes to IBS were all different that's why it's a syndrome,my gastrologist,says mine is a dysfunctional bowel,and the last time I saw him he gave me some Ormoroph to take as needed.So we'll see.

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    • Posted

      Well Richard You've certainly got me thinking that there is a possibility of I think you said PNC. I've read through the symptoms and an awful lot refer to me.Especially the pain getting worse as the day goes on,not waking me,and more pain when opening my bowels.  Would you say the best person to bring this up with is my GP who is useless,or Gastrologist or ask to be referred to a gynaecologist?  But thanks for pointing it out to me.

      Oh and surely you can't spend life just living flat all the time?

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    • Posted

      Norma, it is very difficult for me to advise very much. I am an early retired science teacher with a postgraduate research degree but with no background in medicine. At best the research skills have helped in digging out information on our conditions.  I would like to pose another question though. What is it that makes you believe that IBS is a poor diagnosis?

      In answer to your last question, no I don't spend life lying flat all the time. Whilst on the floor I often type and read whilst on my side It is a trade off.  Initially a few hours on the floor would give me perhaps half an hour of sitting time.Gradually that trade off has improved.

      A fortnight ago I returned from a week's flying on a trip to Croatia in a light aircraft sharing pilot duties with a companion. That's 16hours of sitting in up to three hour blocks without an opportunity to move about much.  Last March I had to postpone an annual visit to relatives involving a 3hr car journey which could have been broken up. I could barely last half an hour driving. That shows my improvement. The initial discomfort of lying on the floor passed soon enough and now I quite like it.

       

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    • Posted

      Hi Richard,Sorry if I sound stupid,but it's not a problem I've ever heard of.

      So what your saying is the longer you lie on the floor the better the repair job so to speak.

      The reason I question IBS,is because it's a "syndrome" I always think it's an easy way for the medical profession to say "I don't know"  Also my last GP told me in his opinion he didn't believe in IBS either. Now I have been through all the system,and I am seeing a Gastroenterologist that's right at the top of his profession,but someone on the IBS forum told me to try this forum,and having read what you said,and Googleing it ,it all fits the way I feel.

      My problem being my old GP retired,and the one I've got now is useless,and my Gastrologist,I only seen last week,and I wish I had this information then.

      Anyway thank you for your help,and I apologise for my ignorance.

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    • Posted

      If ignorance is the right word Norma then you are no more ignorant about Pudendal Nerve damage theory than many GPs. PNE/PNN is said to be rare and the theories quite new so many GPs are not well informed.

      But there is increasing belief at the top of the Medical profession that it might be much more common than thought.  Why?  Because many many cases of Chronic Pelvic Pain Syndrome are never solved.  Just like IBS. There has to be a cause. Pudendal Nerve Neuralgia or Entrapment is a cause.

      No apologies are necessay Norma. I have spent probably over a hundred hours researching this. That only reflects my need, belief and determination to find answers.  In a way I am extremely lucky that I came across what seemed to be the explanation.  And the solution was getting the nerve calmed by not sitting under tension, by keeping the nerve straighter by lying straight on an exercise mat (I found the settee not so good because it is soft and allows the spine/hips/legs to curve) and by minimising exercise that flexed the hips.

      I keep meaning to see my GP to get his reaction to my thinking. His Prosatitis diagnosis wasn't 'bad' as such. He was starting me off on the road to diagnosing the problem and the first port of call is antibiotics in case it's a simple infection.  If that doesn't work it's onto a conveyor belt of tests and eliminating things one by one.  But it can take years.

       

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  • Posted

    Also ... If nerve damage is suspected a common treatment is the drug Amitriptyline. It has been used at high dose level as an antidepressant but in low doses is found to be useful as a muscle relaxant,  I wondered if you had ecer been prescribed this for IBS?

    I have avoided that route only because by taking it I would lose my pilot's licence.

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    • Posted

      We must be two of a kind then Richard,because that's why I don't really accept IBS.  I'm forever researching to see if I can help myself,one of the GPs at my surgery has started to laugh at me when he sees me because he knows I'm always looking up something,but it does agree in trying to help yourself.  Where the older GPs seem to think they know best.

      i do believe years ago you could trust your GP,but not anymore they've made to many mistakes on me,so now I try to take care of my own health.

      Like you say you can't just put a name to something and leave it at that,when people are suffering.  Anyway Richard you've been a great help for me,and I'm definitely going to pursue PNNE. I think these forums are great,I've received more help off these than any GP.

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    • Posted

      Yes Norma we are. I agree too that it's a flip of a coin with GPs. They can't all be brilliant but we should expect them to be honest and proactive so if they have no ideas then at least they should refer you onwards properly.

      I would be pleased to hear of any reactions by anyone in the medical profession you might mention PNN/PNE to. I told you that I hadn't done that yet. I half expect a raised eyebrow and the question 'what's that?'. But yes. You will find quite a bit about it when you start searching.

      It is good to have support from people and sharing ideas like this is so important. Whilst it isn't official medically speaking I am certain that sites like this will become increasingly used for research. The more people report the more the statistics become more meanigful.. We have put something of value into the system. With luck it will in one way or another give us benefit medically just as it has in the sense of support.

      Good luck - and if I do find anything else that might be relevant I shall nip in hear to flag it up.

      Richard

       

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  • Posted

    when I get prostitis it always aggravates my rectal pain or pudendal nerve..which is always in the same spot right above anal sphintor in fact I always thought the pain was my prostate but it wasnt. Also sometimes when I take certain muscle relaxing drugs to long they affect the nerve.. I went on antibiotics for the prostate and my pudendal nerve pain went away . maybe my inflammed prostate aggravates the nerve once the proste inflammation went down so in turn did the nerve.. also I've had stomach issues ibs type things that can aggravate the nerve like right now...I never knew about this nerve I always thought it was some mystery of course no doctors could help with my point is there are things that aggravate it I've had this pain maybe 10 times in my life and it always went away wish it would go away now I have candidias thats created all sorts of stomach issues that has I think brought it on.. nice to know I'm not crazy going to try lyrics any one has success with it? remember with me something eles kicks it in mayvlbe it's the same for others if they can find what it is maybe they can end it
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    • Posted

      Hi Ken,Wow it's been a while since I've been on here.    But needless to say I'm still in the same position I was 11mths ago.

      Since then though,I have had an MRI scan for my Prudetial nerve and the Vagus nerve,both came back stating there was no problem.  So really I'm still in the same position,but my pain has got stronger.  Like you I'm pretty miserable trying to cope with pain daily.    You asked about Lycra (Pregablin) well I've been taking them for about 8yrs,and they haven't helped me.  That's not to say they won't help you,but my advise to you is if you do decide to try them,give it a month to six weeks,and if you still have no relief,come off them.  Because that's another problem I've got,being put on meds to help one problem,then not being able to get off them.

      Take care,and the best of luck.

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    • Posted

      Hi Norma and Ken,

      I was diagnosed with pudendal neuralgia and possibly pudendal entrapment. I have had two nerve blocks. My pain was severe three months ago. I still have pain. Like constant throbbing and I have IBS which makes it worse. I have to stick with the low fod map diet or I pay dearly. I don't think the doctors will cure it. My faith has run out with the doctors including my gastroenterologist. They mean well but have no answers. I am seeing a physiotherapist. She is good. She has released tight muscles in the rectum and vagina. It is a painful ordeal but necessary. I think the whole thing is caused from bacteria. Ecoli or some other bacteria. I feel like I have been poisoned. I have had pain since Nov 2014. It's been a nightmare. I'm tired of going to doctors.

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    • Posted

      Hi Susan,I have just answered your post,and lost it,after writing a load of stuff to you. I will reply to you but right now my batteries low ,so I will answer you tomorrow sorry.
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    • Posted

      Hi Susan, I've just replyed to you again,and its disappeared again.

      So I believe what I am saying is being taken off. Sorry about that. You could PM me and I'll see if I can reply that way. ??????

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    • Posted

      Hi Norma,

      PM me

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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