Having a really bad time!

[stratts]

Hi everybody not spoke for a while,

posted this in pain management section by mistake!! Sorry not familiar with site yet!

To save time explaining my story again please read my posts.

In brief i have had chronic Pelvic Pain for approx 10 years. Originally after numerous doctors i was diagnosed with prostatitis!! As usual!!

It has been a real nightmare for me, i have lost my job, relationship and motivation to do anything.

About 2 years ago after asking and asking for an MRI, i finally had one and they found ai had 3 bulging discs in my lumbar spine. I was aware i had a very bad back injury about the same time my pelvic pain started, so it makes sense. I have been to visit a top surgeon in Leeds called Dr Peter Milner.He said that my back is in pretty bad shape. I have a bad spondylolisthesis (i think it is called!) at L5/S1. He told me technically my back had kind of broken and now it has calcified out of line.

My MRI shows slight impingement on my nerve root. However, i know the MRI is missing something and not showing the extent of the problem. I only had the i think 1.5 MRI not the more powerful.

I am back on the 21st of this month after injections into spine made no difference.

As i have explained in my original post i suffer from:

Obvious very bad lower back pain across back into area above hips.

Pain in lower stomach, with sometime bloating.

Pain in bum area like a very bad dull ache and horrific pain when sitting on hard surface.

Pain in Hips area, front and side also like a very bad aching and throbbing, unbearable to lay on or lean on.

Pain in my legs shooting pain and aching. Mostly right leg into ankle. Feels like something is going to snap when i bend down!!

Pain in my groin area like a dull ache.

The most surprising to me and the surgeon is pain in my Penis shaft again like dull ache and tension. This and other symptoms get worse after sex. Sometimes much worse!!

The reason i am catching up is a chance to actually communicate with people who understand for a change!!

This last six months have been horrific with constant horrible pain. In particular the last three day have been unbearable. I havent slept at all. Cant even lay on my hips without pain!! To be honest i know its not very macho but it has been soi bad it has brought me to tears many times at night.

I personally think i have some a problem with my pudendal nerve and a little with my siatic nerve. I can feel pain bad pain in my piriformis region. I can feel a link to my back pain. Its hard to explain but occasionally i get a sudden sharp pain when moving and the pain will go from my lower spine to the other areas. The doctors seem do not agree with this completely, but i can feel it.

I am not sure what the answer is? I have an upcoming appointment in about July with Dr Baranowski in London, i am just preying i can finally get some answers.

I just want my life back. I want to get back into work and start enjoying things again. I cant remember the last time i enjoyed anything.

Like most of you i am tired of being passed from doctor to doctor. I must have seen 50 doctors in the 10 years.

I am sorry i have gone on a bit!! But to be honest just needed to vent off. I am really desperate for help now. It is having a huge impact on my life and mental health.

I really feel for all you guys who understand my pain and suffer a similar life.
stratts

Posts: 14
Joined: Sat Jun 18, 2011 2:27 am

[Anne smith]

Oh bless you
Hang in there ! If you have an appointment with dr baranofski it is a start of talking to someone who has special knowledge of your problem!, it's along wait unless you have the resources to go private( not every one can! But your youth is a possative factor! If you can get a positive diagnosis at this stage! You have a better chance than a lot of us older sufferers . I have just met baranofskis assistant on the n.h.s and I found her a nice lady to deal with! At least you have found a specialist! Some of us have waited years!
Good look! Hang on in there, you will be surprised what can be endured if you can stay positive
Anne smith

[stratts]

Hi Anne,

Thank you for your reply.

I cannot wait to see Dr baranowski!!

I know i am young, but i really don't feel it. My pain has been going on so long i cant remember what it is like to live without it!!

I try to pick myself up but then i just cannot stand the pain when it gets bad and i find myself at rock bottom. I think living alone does not help. I have tried relationships but people find it very difficult to understand the chronic pain and how it affects you. So having nobody at home with you to talk to or be close to makes it worse for me. But i am avoiding relationships at the moment because of the added pressure!

I really hope Dr Baranowski can help me and it isn't too late.

I know something really isn't right to be in so much pain.

Thank you Anne for your kind words.

Stratts

[helenlegs 11]

Hi Stratts ,
I'm sure Dr Baranowski will be able to help you. It's not at all unusual to have such a hard time getting to the crux of the problem especially when it is possibly pelvic related and then not urological.
Are they ruling out a spinal component to your problems? An impingement is an impingement even if it is only slight, have they suggested anything that may help you? Chiro or spinal Physio perhaps? Maybe because the spinal nerve block had no effect they wonder if anything targeting your lumbar spine would show similar results?
I know we have 'chatted' before and I would advise you to follow up with pelvic nerve entrapment investigations, which obviously Dr B will be able to help you with. You may have both spinal and pelvic nerve irritation but it seems that many Dr's (especially neurosurgeons) here can only focus on the spinal component especially when any sciatic pain is involved.
I have had exactly the same issue but my MRI shows no nerve impingement (I had a successful S1/L5 discectomy 9 years ago, so it seems my history dictates that my problems now HAVE to be my lumbar spine. . . . . They're NOT!)
I can not understand how neurosurgeons can't get their heads around the fact that the sciatic nerve can be impinged anywhere along it's considerable length and not just from the nerve root and lower spine. I will have mentioned a possible piriformis involvement before . That could explain your sciatic and pudendal nerve irritation.
Thank goodness you have the appointment to see Dr Baranowski. I know you will get a few more responses and support from others here, you sound as if you need people supporting you to get through until your July appointment.
As Anne said,try to stay positive, easier said than done sometimes but it can make such a difference.
Wishing you all the best,
Take care,
Helen

[calluna]

Hi Stratts

I can't add anything really to what Anne and Helen have already said, except to wish you well. Hang on in there, things can get better, and for lots of us, they have. I would wish the same for you.

Sounds like they really haven't got your pain under control at all, I hope that they get this sorted out soon. I do hope that your GP is being helpful? If things are bad and it is out of the usual hours - or indeed at any time - please don't hesitate to call NHS Direct, I have always found them very helpful and supportive. They will send out a doctor in the middle of the night to give a shot of painkiller if needed, I know because they did this for me at one point.

Hoping that you have a better day today.

[stratts]

Hi Helen and Calluna,

Thank you for your replies and supportive words. Sounds crazy but it does help when it gets really bad like this, i find it much better to talk to people who understand. I find that my close friends and family just don't seem to get it?. I think it has gone on so long with me they think i am ok. Spoke to my best mate yesterday and told him i have had three really bad days, not slept and felt horrific. He replied oh that's not good and then went on to talk about his new car asking if i can take him to sheffield on Friday to collect it. Of course i said yes but it makes me think he doesn't understand just how bad it can be. To be honest nobody understands what pelvic, spine and nerve pain is like unless they have experienced it themselves.

That's why when it gets really bad it is really nice to talk to others who understand you.

Hi Helen we speak again!! I hope you are well yourself, or as well as you can be. You always reply to my posts, and i thank you for that and appreciate it. I am really counting the days to my visit to Dr Baranowski. It is a 3-4 hour journey which will be costly, especially for me in my situation, but hopefully worth it. I think the most frustrating thing is the waiting between appointments and treatments. This visit all that way is just for a consultation, then waiting moths for treatment and possibly years!! I just want to get in and get it all sorted so i can get on with my life! I am only probably wanting the same as all of us on here, but after 10 years i am getting frustrated and seem to be watching my life pass before me!!

All i can do is wait to speak to Dr Baranowski. Like i have said before i am 100% sure my spine injury has a part to play in my pelvic pain. Like i have said on occasions i feel sharp pains after sudden movement to all my areas of pain, and it always seems to shoot from my lower spine in the sacral area? I just wish the Doctors would listen and believe me?

I think you are right Helen my piriformis muscle is also playing a part, i have very bad pain in this area and tension?

I try to keep going and do some exercise which i have always really enjoyed. In fact i used to train hard and keep in good shape. Like i have said before, i notice that if i train my back it seems to make my pain worse. I think it is due to muscle tension, so i only train one exercise at a time and spread it out. The worst thing for me to train which almost always causes an onset of symptoms is stomach and much more so oblique muscles. I still don't understand why this causes such pain?

The only explanation is that i think i could possibly have pelvic floor instability and imbalance, which is causing problems with most of my muscles?

My worst pain in the last three days has been in my hips, bum and sacral area of my lumbar spine. It has been very intense. I have also had some discomfort and mild pain with bowel movement and when passing urine? I think this is related to very bad muscle tension in my pelvic floor.?

Anyway enough waffling on!! Thanks again for all your replies and suppoert.

Take care
Stratts

[helenlegs 11]

I hope that your best mate is good entertainment to make the journey to Sheffield a little easier.I would probably do the same tbh and then suffer later.
You have got to keep your friends.
I know what you mean about exercise. I used to have a couple of days off in the week, when working and would usually hit the gym as there weren't too many people to 'play' with on say a Tuesday, and I miss it so much. I tried the doing one exercise at a time to try and find out which ones work now and which are not going to do any good, pain wise, but I got so confused by the whole thing I just gave up. I do aim to go back to it and take it a bit more easy but hate the fact that I will be starting from scratch again.
Swimming too, I was always the one as quick as most, powering up and down but would have to be the slow 'getting no hair wet' lady type swimmer now
I definitely know that the endorphin kick back would be so advantageous mood wise. I also love dancing (LOVE IT!) so got a wii dance thing thinking I'll only do a bit but it took me ages to recover from that! and I was absolutely rubbish
A sedentary lifestyle does no one any good either, I'm beginning to think and endorphin rush may be worth the consequences sometimes. It's not easy as you get a bit scared of inciting that pain escalation.
Ugh! don't think I am helping here. Just trying to say I do understand
Take care,
helen

[calluna]

Hello again Stratts - waffle all you like! We don't mind in the slightest.

I think we've all been there with friends who 'don't get it'. I have no answers or suggestions, I'm afraid. Except when someone comments 'but you don't look ill!' in sceptical tones, to which I reply 'thankyou! - I do try!'

And re driving to Sheffield - I don't know how far that would be, but I take off my (metaphorical) hat to you, I cannot drive for any length of time without getting a flare over the following days.

One thought from your most recent post - regarding pain brought on by exercising abdominal muscles, and why this might be - exercising these muscles will raise the tension/pressure inside the abdomen, which will increase pressure on the pudendal nerve, and so pain will increase. Does that make sense?

[helenlegs 11]

I think we've all been there with friends who 'don't get it'. I have no answers or suggestions, I'm afraid. Except when someone comments 'but you don't look ill!' in sceptical tones, to which I reply 'thankyou! - I do try!'

like that one Calluna

[stratts]

Hi Helen and Calluna,

Helen i am exactly the same as you. I have trained in the gym and used to really hit the abdominal area hard. To be honest i think this may have actually partly caused some of my pelvis pain. I did not really balance in out much and i think i may have caused weakness in my lower back which is why i was so susceptible to the injury in the first place. I remember when my back injury happened my hip were completely out of line when i stood in front of the mirror. I remember i was terrified as to what i might have done!! I asked and asked my GP for a scan at the time but he didn't request one until finally about 7 years after the injury!! How stupid is that.! Thats why i think i may have imbalance in my pelvis and instability. I dont think it has balanced since then. This is why i think i suffer such muscle pain all over my body, as the pelvis is the core area.

I have always loved training helen just like you. I have been kind of addicted to it to be honest and afraid to stop and loose my shape and feeling. I know i have to deal with this and maybe accept that i have to stop. Its sooo frustrating!!

I actually received a private message from somebody yesterday and he said that on the chronic pelvic pain site most of the men who suffer chronic pelvic pain are avid exercisers often lifting heavy weights and pushing themselves. He highlighted an example on a gentleman of 36 who trained very hard cycling, snowboarding and gym work. He particularly trained his abdominals excessively hard just as i used to do. He also got into a vicious circle of stress from the bad pain which resulted in worse pain. He would then push harder in training to get rid of the stress which in turn increased his pain. After years of misdiagnosis from urologists and lots of antibiotics he finally met a good urologist who diagnosed him with chronic pelvic pain disorder. He was told to stop training for a long period of time until his body healed. He was sent to a Physio who specialised in myofascial release and it was identified that he had caused a myofascial trigger point in his “six-pack” muscle group, which caused referred pain to his genitals and urinary dysfunction. His excessive bike riding caused compression to his pelvic floor muscles and exacerbated these symptoms. Because myofascial pain increases with stress, the increased stress resulted in an increase in severity of symptoms.

To be honest i can actually relate to this and agree i may be suffering a similar thing. I used to train my stomach ridiculously and may have done a similar thing. I have experienced a very lot of pain in my abdominal muscles which are painful if i push on them.

I said i do also believe my serious back injury is also mostly to blame for a lot of my symptoms as i feel the link as i said. But i am very thankful for his message and find it extremely interesting. Maybe i need to try and just leave the gym work and try to find a good physio who can really investigate my problem.

Calluna i will probably suffer in the days after my drive too, but he is my friend and sometimes you have to do these things.!! When you say about the about training the abdominal muscles causing muscle tension, i can understand what you are saying. Strange how this would relate to my private message regarding this exercise. I just didn't think the abdominal muscles were linked to the pudendal nerve? I suppose they are linked the the pelvic floor, so yes it would make sense.

You see you learn so many things from other people on this site. That is why it is so useful to chat.

Oh and Helen my friend is not a very good singer so we will have to listen to music instead!!