New member from scandinavia, could you please help me?

[Pisama]

Hello everyone!

I am new member and very new with this pudendal problem. I am from Finland and thats why my English is not perfect but I maybe you can understand me? I have had back problem in 8 months now. I broke my back little bit by carrying couch. I dont have prolaps just little protruusio in level L 4/5. I mounths ago I got problems with my sacroliatuberous ligament and illiolumbar ligament, those felt inflammaton and when I walked those were streching and I felt pain. I Dont know at all why ligaments are inflammaton, because I havent done almost nothing in 8 months because of back, just little walking. But maybe I walked in a wrong way or maybe my si-joints are not in a correct position. Even all specialist are saying that those are in correct position. Anyway 2 week ago I start feel little pain on left side of anus, next to this inflammaton sacrotuberousligament. I went to physiotherapeut and she made massage for near my s.t ligamnet and bound where I am sitting, and it helped! I was feeling very good after that. But she said we have to do it again because of cronical pain, even I got THIS problem just few weeks ago. Ok, after secound session i start feeling very bad in pudental nerve, I felt it first time also in my genitals After one week total rest it was better, pain only in left groin. But I felt that when I walked I might get this problem back. Then we deside with my doctoror to put cortisone injektion to the inflammton s.t- and i-ligaments. We really thougts it would help me on this problem but on next day I suffered a lot in all my genitals And since that I have been in awfoul pain on backside and front side. I really feel where this nerve is going. I had also very bad problem, I had tho pee all the time, it was awfoul. Medisine helped me to stop this peeing problem and also helped woth pain. Now I am using 1800mg neurontin, and also 2-3 panacod per day.

So I am very new with this problem, but I have good doctor and he said right away that its pudental entrapment. Do you know is there any hope that this entrapment can go away without surgery? My doctor said that yes, he have seen this. But when I read this site I realised that maybe it is not like that at alll? I will get cortisone injekttion after one week to pudental nerve. Gynegologigal doctor will make it. Do you think it is good to try that? Or can it make also worse? Then If this is not going away,and I have to suffer this non-stop pain, just laying in my bed I have to think something else. So who is the most experince doctor for pudental surgery? Could you tell me good advises or good results? I can go where ever to find help but ofcourse it would be easier to go to somewhere to Europe. Is there any other members from scandinavia ?

Thank you for your time and I would be very happy if you would help me, thank you!!!

[shawnmellis]

Hi Pisama, Since you have only had this for 1 month there is a greater chance that this could get better on its own without surgery one day. If you still feel the same way 1 year from now then surgery may be an option. If you do have pudendal nerve entrapment then it is good you were diagnosed so early. I'm not sure if they gave you the nerve block injection between your sacrospinous and sacrotuberous ligament or not, but I think this is where they are supposed to inject it to get it close to to the pudendal nerve to see if you pain goes away and if it does then the pudendal nerve is related. There are many causes of pudendal neuralgia. It could be entrapment or compression or it could be just neuralgia which can get better on its own, but if you get a pudendal nerve block it is best if they can do it CAT scan guided. As far as who to see in your area for PNE, there are PNE surgeons in France and Europe, France being the best place. You may want to consider Dr. Bautrant in France and see what he says. If you need his contact info let me know Hope this helps.

Shawn

[Pisama]

Hello and thank you very much for your answer !

What is CAT scan guide ? I dont know how dr. will make it yet. I think its two way to do nerve block, trough pelvis muscels and to inside vagina, am I right about this? Wich one is better way to get releaf nerve from those ligaments? I think dr. willl make nerve block to vagina.... thinking is this the best for me?

It´s so good to have this site and that I can ask things from you !

And for sure I will contact doctors in France if I will need them later! But ofcourse I could take contact infomations already now, thank you!

Have a good day all of you!

Pisama

[shawnmellis]

Hi
I am not totally sure if it is done differently for a male compared to a female. I am a man, so for men, the way they do it is with us laying on our stomach and injecting the nerve block into our buttock area, but it may be for women that they can do it through either the rectum or the vagina. If any women out there know about how they normally do a pudendal nerve block for women, feel free to let us know, because I am not completely sure about this since I am a man. I will try to find out though, but so far I have not been able to find too much this subject.

Shawn

[shawnmellis]

Hi, I have talked with a woman who has gotten pudendal pain relief to help diagnose it from a doctor who did it through the transvaginal approch, but it is also possible for women to get it done the same way as men get it done, which is by laying on your stomach and getting it injected into your buttock area with a CAT scan to guide it as close to the pudendal nerve as possible without hitting it. If your pain management doctor has experience doing it through the vagina, you could try this and see if it helps make your pudendal nerve pain go away.

Shawn

[helenlegs 11]

Hi Pisama,Welcome
You need to get a GUIDED block injection. It will not matter how they do it as long as it is a guided one. If it's not guided it is almost a total waste of time.
If they do the block and it misses the correct place they may say that you do not have PN because your symptoms are not alleviated by the block. The trouble is that if they haven't hit the right spot with the injection, you are then left with the wrong diagnosis. Please check that it is guided,and good luck.
Helen

[Pisama]

Hi all of you! I am so happy that you are so friendly and helping me, thank You!!!! Without you I would be totally alone!

I am wondering the mecanism of the bolck. Am I understand right, its no matter where the trapment is if you just get injektion somewhere very near budendal nerve> it might help the way that you dont feel it after OR is it possible that it might releaf the trapment ?

I hope this dr will make it with the guide, have to ask it. He is speciallisied for these problems and I think the only one in Finland who is doing this trought vagina so I think it should be so.... but you never know. My own dr. is very good pain management dr. and he would do it trought pelvis muscels but he said it better to do trought vagina...

Is there some risk about this treatment? Could it make me feel worse? Hope not because its the only hope now.

Thank you very much again!

Pisama

[Pisama]

And one more guestion.

Is it possible to find out where the entrapment is? Is the Potter MRI the only way to see it? And what kind of MRI is this compared with normal MRI ?

[helenlegs 11]

Hi again,
The potter scan is not a foolproof way of finding entrapment, while this type of imaging is very good, it is still not perfect, unfortunately. However there a quite a few people who have had their entrapment/problem reported on the scan which have matched up to what the surgeon found when operating. However there are others that the surgeon has often found more problems not noticed on the scan.
One good thing to say is that I haven't heard of anyone where a person has had Hollis Potter imaging where something has shown up that could be responsible for a persons pain, and have then gone on to have the op and the surgeon has found nothing wrong. If that is not the case I'm sure someone else here will correct me.
The scan HAS to be linked with a good clinical examination to get as near to a perfect diagnosis as possible, BUT nothing can give a PERFECT diagnosis at the moment.
A normal MRI will not show nerves at all.
Dr Filler is opening his own type of imaging (MRN) in London in November apparently, not that I am advocating this or the Potter one, just relaying information
I wonder if your buttock/pelvic muscles are tightening up to 'protect' your low back pain. If your pain is sacroiliac area it could be a spasmed piriformis ?? did your Physio check that out?
I hope the injection works for you .
Take care and let us know how you get on.
Helen

[Pisama]

Hello and thank you again!

Now I have few "another one more guestion" Maybe I will have few more later also

I know there is 2 common places where entrapment can be; A`locks/pudedal canal and between ST ana SP ligaments. So if I will get pudental block/injektion trought the vagina is it possible to help bouth of those entrapments places or just that canal entrapment?

And... injekction trought to vagina or muscels... is there some differences between those that wich one is better consider where the entrapment is ??? Dont know can I explain this but for example if the entrapment is between ligaments is it better to do injektion trought the palvis muscel than trought vagina? Oh... hope you can understand me.

And do you know do I have to take less meds before injektion? I have used meds now almost a week and have rest almost all the time also. So I feel much better but I can still feel the problems.

Thank you for your answers And have a good day !!!


Pisama ( =freckle in english )