New member and my story

[stratts]

Hi everybody, i am new to the site and like most people on here have a long history, approx about 9 years of chronic pain and many visits to different doctors and no real answers for my pain.
To be honnest it has been a real rollercoaster physically, mentally and emotionally and i have been so confused, upset and depressed many times during this time.

My story began approx 9 years ago and i began to experience tension in my bum muscles, pain after urinating and pain in the uretha and tip of penis. I was initailly sent to Urologists who after numereous tests suspected i had non bacterial prostatitus, which seems to be a scapegoat diagnosis used by lots of doctors who cannot give you an explanation for your pain and just try a number of different drugs which dont help. No infection was ever found which is why they claimed it was non bacterial prostatitus. I endured lots of tests including a camera down the uritha into the prostate and bladder twice, which was not pleasant, ultra sound up my back passage and blood tests, all of which offered no real answers for my pain. I have spent lots of money, often when i could not afford but in desperation on private consultations in different cities, visited many different GP's hoping one will show a genuine interest in my problem, visited hospital during the night in so much pain only to be sent home and told to visit my GP and urologist. It has been unbelievable and changed me completely as a person.

During this time my life has been seriously affected, i struggled seriously at work. I worked as a production manager for 10 years, working crazy hours and often in unbelievable pain. sometimes i nearly passed out with the pain and would just keep it to myself because it was very difficult to talk to people about the symptoms. I would sometimes go into the toilet and cry with the pain. I have great sympathy and understanding of the people posting on this site and believe it is only people who are suffering and experiencing the same problems that can fully understand and relate to what life is like with this horrible chronic pain which is not recognised or diagnosed easily at all.

Last year i lost my job after 10 years and i am left with very little confidence and in fear for my future. I am scared to commit to a job in fear of pain. I dont know what job to look for? A job with too much sitting or driving will cause me pain, too much heavy work will cause me pain, too much stress will make my situation worse. You get no support financially from the government and the illness does not seem to be recognised or understood. This condition is a serious disability but the only people who know this is the people suffering. More needs to be done to help us people and try to understand this disability. I used to be a strong and successfull man always busy and ambitious, but this illness has really taken it out of me.

Approx 2 years ago i decided to investigate my symptoms myself and began reading and studying on the internet like many others on here. I began to find lots of answers and related many of my life experiences and factors to paint a picture and diagnosis for my own problem.

Originally i came accross Dr wise and Dr Anderson in the USA who have studied Chronic Pelvic Pain for many years and have developed the Stanford Protocal. I purchased their book called"headache in the pelvis". It was from this moment i began to understand my problem and understand the possible reasons for my pain. Many things mentioned in the book for the possible cause of pelvic pain, i could relate to myself. I had trained very hard in the Gym for many years leading up to the beginning of my symptoms including intense abdominal work outs. Dr Wise and Dr Anderson claim that in the USA many American Football players and athletes have developed and suffer from chronic pelvic pain. In the book it also mentioned that pelvic pain could result from trauma such as a back injury, which also rang alarm bells and i then realised that i had had a severe back injury at the same time my symptoms began. However, my doctor simply told me to rest it and never put the two together.!!

Finally last year after practically begging my doctors i was finally sent for an MRI scan of my back and the pelvic floor. The scan showed i have 4 bulging discs at the bottom of my spine!! This must be from the injury so many years ago. So what would the scan have shown at the time when the injury happened?

My symtoms have changed and intensified over the years. My symtoms now include

1)Pain and aching in my groin below groin at the bottom of the bum.

2) Bad pain and aching in my buttocks and sometimes back of my legs. Muscle tension on all sides

3)More pain after urinated

4)Pain in the uritha

5)More recently pain in my abdominal region, like stabbing, tension and bloated feeling. Mostly around the belly button and below. This causes me a lot of discomfort.

6)For some time now i have had pain in my penis shaft which has confused me and my doctors. My penis would just become tense and almost spasm, becoming painful to touch and aching and throbbing. this has caused me lots of pain and discomfort and has the most phsychological affect on me.

7)Occassional bowl movement problems and tension.

8)Increased pain after Sex

All these symtoms seem worse in the cold months, when sitting for long periods or long journeys driving, when carrying out heavy work like in the garden which obviously also causes me back pain with my discs.

I am very limited on exercise now and have had to change my life. I have always loved keeping fit and healthy, but understand after reading about this condition that it is not advised to do any exercise, which i really struggle with and dont want to give up completely. I still go to the Gym, but have had to change how i train, lifting less weight and only doing cardio work on the cross trainer and not the bike or rowing machine which seem to irritate my symtoms. The main thing i really struggle with is training stomach and usually after any stomach exercise which i rarely do now i suffer more. I struggle with this as i used to enjoy training and particularly my stomach and now i am very limited to what i can do, but refuse to give up completely. It makes me feel better mentally, so i try to find a balance between the helping myself mentally and the increase in pain after exercise. To be honnest i actually feel better most of the time after exercise such as walking and cross training, maybe its because it improves blood flow and relaxes muscles.

I know most of the people reading this will think that i am crazy worrying about exercise and going to the Gym, but it was a big part of my life and i enjoyed it so much and it made me feel better. It is so difficult to just give up and not train anymore. Trust me most people with my pain would deffinately not go to the Gym, most dont even need a reason other than lack of will power. I guess i carry on eating healthy food and going to the Gym to keep myself from allowing this pain and illness completely take control of my life, so i suppose i am fighting this illness and trying to hold on to some normal life even if it may make my pain worse. Most people dont understand this?

To bring you up to date after self study i have had to practically tell my GP what i think is the cause of my pain and guide him, which, i find unbelievable and frustrating, that he is earning thousands of pounds and i seem to know more than he does?

I have recently seen a Urologist who wants more MRI scans to look at a particular nerve and have visited the pain clinic where on Saturday i had my first Pedundal Nerve Block on one side. It is a little early to tell if it has helped me and i am still feeling the pain from the injection itself!!

I am convinced after my own investigating and knowing myself that my pain is related to the Pedundal Nerve. I am not sure weather it is Neuralgia or Entrapment. i know my muscles in the pelvic floor are extremely tense and tight which may be the cause or making the sutuation worse. maybe my muscles became tight as a result of my back injury as a form of protection. I also think that my extensive abdominal training may have contributed, possibly making my lower back weak causing an inbalance.

Finally, i feel that the doctors are beginning to look in the right areas after 9 years of hell. However, i am still really lost and confused and desperate like many others on here, for some good solid advise and explanation.

I would like to find a Physio Therapist who specialises in the Pelvic Floor, Trigger points and Myofacial release to try and relax my pelvic floor muscles which may be pushing on the nerve or causing the problem. I live in Beverley in East Yorkshire, so if anybody knows of any therapist near me who can help please let me know because i would really like to try to eliminate the less intrusive options before something like surgery.

I also understand after reading posts on this site that two doctors in Uk specialise in this condition (Dr Greenslade and Dr Baranowski). I am now considering asking my GP to refer me to one of them so at least i can get experienced help. I have also read that their is a specialist team in France and many people from this site have visited and had treatment there. The problem is that i am now not working and have spent all my savings so cannot afford huge costs. What i wanted to know is can i get funds from the UK for treatment in France. If so how can i appply for these funds?

I am emotionally and mentally drained and weak from this. I have lost my long term job, and struggled in my relationships. I will be honest i have thought about ending my life a number of times and on one occassion nearly did. But, i have a good family and partner now who try to understand and support me which make a big difference. However, i still feel lonely with this pain and although people around me try to understand my pain, i know they will never understand it like we do. It is just not possible to clearly explain, i have tried many times and still people ask question like how is your back!!!! My back hurts badly but the other symptoms hurt the most. I cant blame these people or be angry with them, they are just trying to show concern, but i feel frustrated sometimes. But how can i expect them to understand my illness when most professional doctors dont even understand?

I am now just trying to remain a bit more positive and not give up trying to find help. I just wish that more Doctors understood this condition and it was recognised as a disability which requires support from the government, emotionally, mentally and financially.

I would like to end by thanking you for reading my story. I know i probably rambled on a bit and i have probably missed lots out, but it is so difficult to try to put in writing your experience, so people can understand. I have also probably made spelling mistakes and grammer mistakes, so i appologise for that!!

I have complete sympathy and understanding for the people on this site who have experienced and are still exeriencing what i have and still am. My thoughts are with you all and we can all finaly, feel that we are not completely alone. Maybe it would be a good idea for all the people suffering to try to organise a meeting and try to push for more help and understaning of this condition from the NHS and Government. I am sure most of the sufferers would definately meet, i know i would.

Take care

[Violet M]

Stratts, Amanda is one of the experts on getting help from the NHS and getting disability so you probably want to talk to her. Also check out the UK section of the forum for possible PT's.

There can be life after PNE for many people so hang in there and hopefully with the right treatments you will at least be able to enjoy life again even if you aren't a world class weight-lifter. I can't lift weights anymore but I can enjoy gardening again and sit for long periods of time so hey....I'm happy. Hope things work out for you too.

[donstore]

Hi Stratts,
You don't have to apologize for your story. You are among friends here. We all have experienced what you describe. It's tough to have the exercise that increased your cardiovascular fitness and pumped out all those endorphins make your nerve pain worse. It's terrible to go to doctor after doctor and get no answers. Unlike more common problems, you have to be your own doctor with this problem. Piled on top of the pain, this is a really big job. Pain can really wear you out. Until you can fix the problem, try to cut into the pain. Opiates and lyrica have really helped me to function. Find what works for you. Get a cushion that helps you to sit when you have to. Exercises that work on your core muscles unfortunately seem to increase PN pain. If something makes you hurt more. don't do it. I had to give up the stairmaster which I loved (all those endorphins) and take up swimming (cold, wet, all that water). There is a better life after PN but you have to be your own best advocate. We are all here for you.

Good Luck,

Don

[stratts]

Thank you very much violet and don for your understading and kind words.

I hope you are both well and have positive outcomes from your situations

I am beginning understand now that you have to help yourself with this condition which is totaly under funded and not understood in the medical world!!

I have further pain and discomfort due to the fact i have 4 bulging discs also, which in fact could have initially began the cycle of problems damaging or pushing on nerves and causing muscle spasm in the pelvic floor.

So now i am trying to begin by helping my discs repair following a strict programme of exercises, stretches and supplements to try and repair my back.

The reason I think i have problems with my pedundal nerve due to the fact i have pain in the penis, genitles, uritha and bladder and know the pedundal nerve plays a part of the functions of these areas.

I think i have some siatic pain also, experiencing bad pain either side above my hips, and bad pain in hip area and down the back of my legs with tension in hamstring, calf and even my feet!!

I have pain in the bum muscles glutes and piriformus area?

I also have bad abdominal pain which could be a result of my bulging discs in my lumbar region and also maybe my pedundal nerve?

I know i have to change my way of thoughts and try everything to help myself. All i want is to lead a normal life like i once had. I worked very hard as Production Manager long hours and often stressful but enjoyed it.

After losing my job as Manager last August i had some tempory work in a local factory on a production line. I had so so much pain in this job, probably due to the lifting, bending and standing bent over in one place on the line. This was horrible and i would be in so much pain i would nearly pass out and be near to tears. This time was horrible, but i had to go to pay my mortgage. I dont think the shift work helped either.

So i know i need to try and get a good job again, but i am so scared of having this pain again that i know i need to find a specific job which will not make my symptoms so bad. This is the difficulty because its hard enough to get a job, nevermind a specific job. And to be honest i cant think of a job that will suit. Too much sitting is not good for me. Too much lifting and heavy work isnt good either. To be honnest its better if i walk.

I am frustrated with the system and feel like probably most on this site, the government does not do enough to support people with this problem. They dont understand the limitations it put on every aspect of your life. I think its about time all us sufferers stand together and maybe try to fight for help, support and understanding.

I know this sounds far fetched but together we are stronger, as 1 person nobody will listen or take you seriously.

For example, i have a programme to follow to help my discs in my back. A programme which could potentially heal my bulging disc problem. However, this programme, is so demanding and requires so much time, doing exercises, stretches, ice treatment every hour, that if you had a full time job it would be almost imposible to follow!!!

Not to mention the costs. The supplements alone cost approx 50 ponds a month. They recommend charoprator treatment to begin with up to 3 times a week, which you cannot get on NHS!! Thats 90 pound a week. They recommend physio therapy in the form of muscle tension release, using massage, trigger points and myofacial release. Again physios on the NHS do nothing hands on at all, in fact they are useless at treating this condition. To even try to find a local physio who you pay to treat this condition, who understands how to treat you is nearly impossible!!!!

What i am trying to say is that it is a viscious circle. Now i have so much pain and discomfort i am unable to of scared to get a good job or a job which will not make my situation worse. Therefore, it is impossible to have the funds to properly treat your condition properly. Too be honest even in my previous good job as Manager it would have been very difficult to afford the costs due to other life commitments and ridiculous inflation costs.

So i find myself wanting to help my situation and am willing to give it 100%, but to be honest in the real world it is impossible. I will do what i can, but fear that without following the full treatment programme the result will not be the same.

This is what frustrates me with the system and NHS. The purpose of the NHS service which we all pay for dont forget, is to provide any necessary medical help to all people both rich and poor to cure their illness. However, in this case all the teatment you require or supplements etc are not available on the NHS, so therefore, the system does not work.

This viscious circle is what is what troubles me the most and i think its about time the NHS began to realise that treatments such as chiroprator should be available on the NHS if it is essential to helping cure an illness. And also the government should support you and help you get better and back into work and life.

I am sorry but this is something that i feel strongly about. So much support is available for other illnesses and problems yet for such a, what is now becomming a common illness, no support or recognition is given???

[stratts]

Hi Sunil

What is the SIJ test and how is it done?

I live in the UK. Do you know if it is done in the UK?

[calluna]

Hi stratts - I too am in the UK. My story is shorter than yours - you can see the basics in my signature. I am so sorry that you have had such a difficult time and are in such pain.

With regard to disability - I believe that Amanda is actually in Eire, not in the UK, so her situation is different - I don't know of anyone on this board who has yet obtained disability here in the UK. I have so far been turned down flat and am trying to get my act together to reapply - helenlegs11 has an appeal hearing coming up soon. But I am really surprised to hear that you've had to pay out money for anything, so far none of my treatment has cost me a penny including all the acupuncture sessions that I had. I did buy myself a nice cushion, though! with PN, we soon learn to avoid sitting completely, apart from with our helpful cushions! The one that I use is called Togu Air Active, and I bought it from Amazon, it is not cheap but I don't know what I would do without it.

With regard to PN issues, there is divided opinion as to whether physio actually helps or not. It does not seem to usually be recommended here in the UK, apart from sometimes post-op. But then your issues, with the disc problems, are a bit different. I don't have the knowledge to advise you, but I do hope that you have better luck with this in the future. Do take care, though, there are many people out there who are all too ready to hold out their hands for your money, promising a cure which may or may not materialise. If your doctor isn't recommending it, there is usually a reason for that.

I really hope that things improve for you soon.

[Violet M]

Oops, sorry about the misinformation on disability in the UK. To me -- you all just live over there across the big pond. I did not realize no one from the UK has obtained disability for PN -- that is truly unfortunate.

[ChrisUK]

Hi stratts

I read you story and felt both empathy and a desire to help you if I can. I suffer remarkably similar symptoms and have had the same thought as yourself. I am a Yorkshire lad now expat living in Bristol. My pain started after anal fissure. Fissure healed but pain remained. Have had sphincterotomy and four botox treatment with the latest being a massive dose to pelvic floor muscles and leaving me incontinent for 3 months.nothing helped. I am now seeing the best pn physio in Europe. I travel over to Dublin to see her monthly. Her name is maeve whelan. My pain has reduced. Was so moved by your story I am offering to pay your return flight for first visit if you can stump up the fee to see her which isn't cheap at 180 euros. Appt is 90 mins.

Let me know

[Violet M]

Chris, glad to hear you are having some success with Maeve and PT.