New member. Need advice.

[fysiopysio]

Hi!

I came across this site because I have many of the symptoms like you guys have. I am wondering if you can help me with your opinions.
I am a 21 year old male physiotherapist-student from Norway, so pardon my bad english-writing. I am a very active person, playing soccer at high level, and training with weights at the gym.

In the beginning of June this year when I was driving in my car I noticed a painful ache in my testicles. It was a superficial skin-pain, which over the night became intolerable. I went to see my doctor and they couldnt find anything, I got painkillers and was sent home. Over the last 4-5 months sitting, training, and even walking/standing up for a long time has been painful. MRI's does not show anything patologic and my doctors doesnt seem to understand how great my issues is , resulting in very long waitingtime with nothing happening. I've had been seen by urologists, and are waiting to talk with a neurolgist. I have not gotten a diagnose yet, wich is frustrating in many ways. I have for the time beeing quit my studies due to mye problems, and are basically just lying in bed/ sofa and doing nothing. The best way to lie down is on my back, and the pain can get worse if i lie on on side(especially my left side).

My medical history is good, I have not been much sick over the years , and have not experienced any pain in my testicle area before. BUT, I have had som problems with stabbing knife-like-pain in my rectum, from 1 year ago, after lifting about 180 kg in deadlift. This pain is triggered by deadlift-like movements(wich I have stopped doing) , but I have not experience this type of pain after other types of excercise, including other weithlifting-excercises. So I could sqat 180 kg, but I could not deadlift 20kg, cause then I would get this type of pain, post to the training. The stabbing pain I had also could be triggered when I for example ate A LOT at a time(full bellY), and when lying on my stomach in soft beds, and sometime(not very often) after sex with my girlfriend. This stabbing pains, was/is not a big problem because it could happen once every 2 or 3 months, so they were not a great issue for me. I am however thinking that this pain could for some reason have some part in why I have developed the type of pain I have now.

I have recently started using tricyclic-antideppresiva(LYRICA), and it gave me relief. So when just lying around, not doing anything, Im not in pain, wich is lovely. But when I get out and walk for half and hour/hour over a period of some days, I start to get pain again. But this pain I am experiencing when on Lyrica, is not so intense, but are more of a dull ache inside my pelvis(around and inside my rectum)... So I'm kind of afraid of doing anything because then it gets painful..

I live in the second biggest town i Norway, a town called Bergen with 200 000 inhabitans. As you see it's really not a big city on worldwide-basis, so it is a problem finding good proffesionals. I have been trying to get into touch with physioterapist wich speciality is the pelvic floor, but this kind of therapist does not exist here. So I'm kind of in no-mans-land, not getting any progression in finding out what causes my pain.

Do you have any good advices, opinions of what might be the problem? I am really hoping it's just a muscular problem and not a structural problem(bones,ligaments), but how can I know? Please help me, Im desperate...

again sorry for my bad english...

[carolynm]

Welcome to our group!

Your symptoms sound suspiciously of PN. Violet, a beautiful woman, also suffered PN as a result of weightlifing, and I"m sure you will hear from her as well.

I probably couldn't spot Norway on a map, but did you look at the section on France, UK, etc on this forum? Is there any way you can spend the $$ and time to go see a PN doctor to get officially diagnosed, one way or another?

I'm not surprised that your tests are coming back with no pathology reported. In the US a radiologist named Hollis Potter is doing 3T MRI's that use special software designed to see such small nerves as the pudendal. She is one of the only doctors that have the reputation for being able to spot PN on film.

I think it is imperative to begin reading up on this disease, and we always tell new member to be your own ADVOCATE. Learn, learn, and learn some more and you will be empowered to seek the diagnosis and treatment you deserve.

Much luck on your journey, you are among friends here.

cm

[Violet M]

Hello FP,

Your English is excellent -- no need to apologize. I'm sorry you are experiencing so much pain and inability to exercise and that you've had to quit your studies. I assume you were checked for a hernia? Maybe you can find some PT's or docs in the largest city in Norway -- have you tried there? Often university hospitals with medical schools are a good place to check.

Is there any chance one of the physios in your city would be willing to learn pelvic floor myofascial release techniques? If not, one of our members posted that Peter Dornan from Australia sent her some information on what she could do for self-treatment -- or you may need to travel for an evaluation by a therapist who can teach you some treatments you can do yourself. You can check out the physical therapist section from the left menu on the homepage at www.pudendalhope.org to see who you might travel to. If you are traveling to France, you might as well see one of the French PN docs for an evaluation at the same time.

If you are lucky maybe you have just strained your pelvic floor muscles and you will be able to get back to normal just by living a careful lifestyle and doing some self-treatment. If you have a musculoskeletal predisposition to pudendal neuralgia you may need to be careful permanently and avoid extreme exercise. This would be difficult to accept when you are so young and active but it's just not worth the risk. I will never be able to lift weights like I did before but at least I can have a job and sit for many hours a day now. Please be careful and allow yourself plenty of time to heal before trying to do too much.

Best wishes,

Violet M

[helenlegs 11]

Hi fp,
Welcome
I would say that the shooting pain you experienced in the past probably are related to the condition you find yourself with now. I would always mention this 'older' symptom when you are having any examinations as it may be relevant to this situation.
It is such a shame that you had to quit your studies. . .how far had you got ?
You are doing the right thing by stopping the exercises etc. I am so pleased that the lyrica is working to an extent. I use that with cymbalta (and then tramadol when needed), but it can be combined with quite a few other medications although it is a case of trying and testing for any positive effects.
It could well be a muscle problem especially if doing that weight lift brought on the stabbing symptoms, it is a shame that the symptoms you are currently experiencing have not subsided with rest.
Because you were training to be a physio were any of your lecturers able to advise you about anyone who may be able to help you with targeted pelvic and PN physio? If not I would email some of the physio's on the home page, including Peter as Violet suggested to see if any could help you.
The next stage would be a diagnostic PN injection, which some find can be permanently helpful.
There is someone in Finland (Helsinki) who has had some PN treatment there. . . .you maybe closer to the UK however.
One way or another we will try and help as much as possible.
Take care
Helen

[Pisama]

Hi !

I am from Finland and Helsinki. I am a woman but no matter, I have also same kind of symptons like you, pain starts from rear end and after I felt pain also on perineum, genitals and groin. I am also new with this thing, suffering just 2 months. I was glad that I went right away to highest pain management dr in Finland and he said what this problem might be. Today I got my 2. nerve block "try". First one to the ischial spine(most common place for entrapment) didnt help, and actually I didnt felt any pain while gyn dr was palpating that before. Today GYN palpated alcoxs canal area(2.common place for entrapment i think) and I felt like a chock, this provoked my pain from 4 to 10 and more. So this is might be the one part of this pain puzzle. He also injekted this with cortisone. Now I can just wait and hope sand see.... at least I hope I would not get more pain, pleaseeee not....

Anyway. Where do you live in Norway? I am happy that I live in our capital and I can find the best drs easily withouth travelling. I like Norway a lot! I have been may times In Norway. Oslo is my favourite and one of the nicest place to live if i should move out from Finland. Would be cool to live on top of the Holmenkollen I know, I should have have moneyyyyyyyyyy for that. But it would be so lovely to go to ski from backyeard and after wacthing nice wiew to the see.

So I am not sure do you have some objekts left in Norway, have you called or contacted to your highest pain drs etc. Its hard to find out those before but I found mine because i have had back broblem also so I knew where to go with this weird thing also. Now I have 2 dr persosns who are taking care of me (hope so) pain management dr and gynegolog professor. THey know pn and pne, they also can try to treat this and they have done this before also. But I have so little experiense from them about pn and pne so I dont know can I say that come to Finland they will help you for sure. Maybe after few months i could say that. But I would recommend that you would search help from all over the Norway and if you cant find the help I would go to the France because I think they can really say what is going on with you. Also my plan is that if the drs here cant help me I will go to France.

Hope to hear you later. Now its late and I really dont know how many mistakes I wrote because my eyes are almost closing but maybe you can understand . So good night Scandinavia and have a good day USA;::: ooor is this right

[fysiopysio]

Welcome to our group!

Your symptoms sound suspiciously of PN. Violet, a beautiful woman, also suffered PN as a result of weightlifing, and I"m sure you will hear from her as well.

I probably couldn't spot Norway on a map, but did you look at the section on France, UK, etc on this forum? Is there any way you can spend the $$ and time to go see a PN doctor to get officially diagnosed, one way or another?

I'm not surprised that your tests are coming back with no pathology reported. In the US a radiologist named Hollis Potter is doing 3T MRI's that use special software designed to see such small nerves as the pudendal. She is one of the only doctors that have the reputation for being able to spot PN on film.

I think it is imperative to begin reading up on this disease, and we always tell new member to be your own ADVOCATE. Learn, learn, and learn some more and you will be empowered to seek the diagnosis and treatment you deserve.

Much luck on your journey, you are among friends here.

cm

Hi again!
Yes I have been looking at the section on France etc. and I do have the amount of money to spend to see a PN-doctor in the UK or France( I am lucky beeing a norwegian citizen, because it gives me stabil economy)

I want to try to get some help in norway first, and if don't get the help I need I will travel to other countries. I want to get in touch with a PT and see what gives..
thank you for your answer

[fysiopysio]

Hello FP,

Your English is excellent -- no need to apologize. I'm sorry you are experiencing so much pain and inability to exercise and that you've had to quit your studies. I assume you were checked for a hernia? Maybe you can find some PT's or docs in the largest city in Norway -- have you tried there? Often university hospitals with medical schools are a good place to check.

Is there any chance one of the physios in your city would be willing to learn pelvic floor myofascial release techniques? If not, one of our members posted that Peter Dornan from Australia sent her some information on what she could do for self-treatment -- or you may need to travel for an evaluation by a therapist who can teach you some treatments you can do yourself. You can check out the physical therapist section from the left menu on the homepage at http://www.pudendalhope.org to see who you might travel to. If you are traveling to France, you might as well see one of the French PN docs for an evaluation at the same time.

If you are lucky maybe you have just strained your pelvic floor muscles and you will be able to get back to normal just by living a careful lifestyle and doing some self-treatment. If you have a musculoskeletal predisposition to pudendal neuralgia you may need to be careful permanently and avoid extreme exercise. This would be difficult to accept when you are so young and active but it's just not worth the risk. I will never be able to lift weights like I did before but at least I can have a job and sit for many hours a day now. Please be careful and allow yourself plenty of time to heal before trying to do too much.

Best wishes,

Violet M

Hi Violet!
Yes I have been checked for hernias(I think), the doctor told me to have another MRI to check it out, I did and it did not show anything. I was wondering at the MRI if I should "push" during the scanning to make the hernias show, but I didn't because I was never told to push. Do you know how it's done?

I have been talking to some physioterapists, but they do not have the knowledge to do internal work, and they're not allowed either(because of strict healtrules)... I i find a specialist in Oslo(the capital) I will go there its only half an hour flight( I can probably stand during the flight, lol )

I have been really careful since it started, It has been so painful I have been lying in bed/sofa, and walking were little for the past 5 months:/ even standing up over some time makes the pain come. Have been using lyrica now for a month, but now the pain has come back, and I really dont want to have a larger dose as it really makes my brain dumd:P feeling drowsy and cannot remember good when I read homework...

thanks for the answer

[fysiopysio]

Hi fp,
Welcome
I would say that the shooting pain you experienced in the past probably are related to the condition you find yourself with now. I would always mention this 'older' symptom when you are having any examinations as it may be relevant to this situation.
It is such a shame that you had to quit your studies. . .how far had you got ?
You are doing the right thing by stopping the exercises etc. I am so pleased that the lyrica is working to an extent. I use that with cymbalta (and then tramadol when needed), but it can be combined with quite a few other medications although it is a case of trying and testing for any positive effects.
It could well be a muscle problem especially if doing that weight lift brought on the stabbing symptoms, it is a shame that the symptoms you are currently experiencing have not subsided with rest.
Because you were training to be a physio were any of your lecturers able to advise you about anyone who may be able to help you with targeted pelvic and PN physio? If not I would email some of the physio's on the home page, including Peter as Violet suggested to see if any could help you.
The next stage would be a diagnostic PN injection, which some find can be permanently helpful.
There is someone in Finland (Helsinki) who has had some PN treatment there. . . .you maybe closer to the UK however.
One way or another we will try and help as much as possible.
Take care
Helen

Hi Helen

I should have been starting my second year at school, so its pretty sad that I cannot follow my class further, If I get well I have to start with a new class:(
The lyrica has actually stopped working the past days, so Im in a lot of pain at the moment, so I may have to start using higher doses. What kind of amounts is your cymbalta?

Im really hoping its a muscular problem! I'll probably find out if I get intouch with a pelvic PT.

thank you for your answer

[fysiopysio]

Hi !

I am from Finland and Helsinki. I am a woman but no matter, I have also same kind of symptons like you, pain starts from rear end and after I felt pain also on perineum, genitals and groin. I am also new with this thing, suffering just 2 months. I was glad that I went right away to highest pain management dr in Finland and he said what this problem might be. Today I got my 2. nerve block "try". First one to the ischial spine(most common place for entrapment) didnt help, and actually I didnt felt any pain while gyn dr was palpating that before. Today GYN palpated alcoxs canal area(2.common place for entrapment i think) and I felt like a chock, this provoked my pain from 4 to 10 and more. So this is might be the one part of this pain puzzle. He also injekted this with cortisone. Now I can just wait and hope sand see.... at least I hope I would not get more pain, pleaseeee not....

Anyway. Where do you live in Norway? I am happy that I live in our capital and I can find the best drs easily withouth travelling. I like Norway a lot! I have been may times In Norway. Oslo is my favourite and one of the nicest place to live if i should move out from Finland. Would be cool to live on top of the Holmenkollen I know, I should have have moneyyyyyyyyyy for that. But it would be so lovely to go to ski from backyeard and after wacthing nice wiew to the see.

So I am not sure do you have some objekts left in Norway, have you called or contacted to your highest pain drs etc. Its hard to find out those before but I found mine because i have had back broblem also so I knew where to go with this weird thing also. Now I have 2 dr persosns who are taking care of me (hope so) pain management dr and gynegolog professor. THey know pn and pne, they also can try to treat this and they have done this before also. But I have so little experiense from them about pn and pne so I dont know can I say that come to Finland they will help you for sure. Maybe after few months i could say that. But I would recommend that you would search help from all over the Norway and if you cant find the help I would go to the France because I think they can really say what is going on with you. Also my plan is that if the drs here cant help me I will go to France.

Hope to hear you later. Now its late and I really dont know how many mistakes I wrote because my eyes are almost closing but maybe you can understand . So good night Scandinavia and have a good day USA;::: ooor is this right

Hi Pisama!

Im glad to hear that you managed to get intouch with a paindoctor! this is very dificult here, because you have to visit ALOT of regular doctors etc before reaching the best! As you are a new sufferer, I really hope your injections will help you

I live in Bergen! have you been there? Its a nice city, but It always rains, so I'd pick Oslo if you wish to move here

[Bathsheba]

Hilse fra America. Jeg studertet Norsk pa univerisitet for mange are siden. Now I can apologise for my old Bokmal Norwegian studied 40 years ago. I don't know any Nynorsk....I am sorry you are going through this. I too am on Lyrica, a nerve soother, and like you am pain free but pretty useless, just lying around. It's impossible to do the things I used to to. I can imagine how hard it is for a young student like you. I am retired. The other members can offer more advice, I just wanted to add my moral support. Lukke til.... which I learned as Lykke til.