Health Organization for Pudendal Education

Hi all,
Just new to this site. I gave birth to my son October of 2009 in which i suffered nerve damage was a very difficult birth in which both of us nearly didnt make it.
After the birth I noticed i had no sensation or urge to urinate so my bladder just kept filling and then i would leak if it was extremely full. had a lot of problem with the maternity hospital in question with trying to get this sorted the basically kept looking at me like i was loosing it or just moaning because i had given birth as i was only 22 at the time. I eventually got reffered to another maternity hosptial here in Dublin Ireland which have been looking after me since. i had numerous tests done including to emg's which told them that it was the pudendal nerve that was damaged. I have had about 30 infections to my kidneys since this injury as I don't Empty my bladder properly and I have to self catheterize daily too. I also have to get physio for my (back passage) as recent tests have showed the mucles getting very weak and I could become fecal incontinent if not sorted. But since the year has gone ive gotten no sensation back I've no sensation during intercourse which i only recently found out as i was afraid to have intercourse after the birth and am a single mother. But ive been told there is no cure for this and i am like this for life now. Its really taken its toll on my life and am told this problem is very rare in Ireland so there not very up to date with injury. Said i would talk on this site and see if there are many people in the same situation. I am also going to have a medical negligence case in Ireland with the Maternity hospital soon too and finding everything just so stressful.

thanks for reading hope to speak to you all soon

Take care L xx

Many of us had pudendal nerve symptoms that started after child birth but I don't know of any others who were told definitively that it was due to irreversible damage to the pudendal nerve. Mine was due to a pelvic joint injury putting pressure and traction on the nerve, some are due to soft tissue injury leading to scar tissue entrapment of the nerve...I guess what I am saying is, have you really been told your nerve has been severed or otherwise irreversibly damaged by childbirth, or just that it is conducting badly? If it is only conducting badly it is probably not so much "damaged" as it is entrapped, and this is treatable and even sometimes curable.
I guess I am trying to determine what you have been told so far, to see if the situation is really as hopeless as you seem to have been told. Pudendal issues after child birth are often secondary to other types of pelvic damage from child birth, leading to entrapment of the nerve...the usual case is, that this can be addressed with at least partial improvement. Unless you have some substanntially different data about your own condition, chances are what you really need, is to be using internet resources such as this one to seek out more knowledgeable care.

Hi Mammy and welcome to HOPE!
My, you've certainly had a rough go of it! I'm so sorry! But congratulations on the birth of your miracle baby!
I'm in agreement with Hermajesty. We need a bit more info in order to try to advise you or at the very least, point you in the right direction.
Additionally, I agree with her advice to research anything and everything you can regarding your condition. This site is a good place to start. Please feel free to ask lots of questions and we'll do our best to help you and support you!
Warm regards,
Karyn

hello ladies thanks so much for your replies well what the told me was that according to there tests the nerve has been sretched beyond repair. they gave me six months after the birth to see if there was any improvement with regarding sensation and done the second emg to see if there was any difference and thats when the told me they would have to be realistic with me and say that this is now permanent and we really need to get the infections under control before they cause a lot of damage to my kidneys. They havent even explained the name if any of the problem i have all i know that its the pudendal nerve its why im so confused but one nurse in the perineal clinic said something about pudendal neuropathy which is what brought me to this site. I see a specialist every couple of months to see how im getting on with the catheterization and so on and a midwife rings me weekly to check up on me and treats all the infections i have. they told me they reckon the problem happened due to a prolonged delivery i was left pushing for 2 hours and forth mins and they reckon it was the babys head sitting on the nerve that caused the problem but i havent been told properly as this is a medical negligence case i wont get the proper information until i get to court. but the baby was 9lbs 6 oz and im only 5 ft and under 7 stone so it could make sense???

Unfortunately since we are from different countries I do not know the law there as it pertains to medical records; but I know here in the USA all medical records are THE PROPERTY OF THE PATIENT and copies of everything must be handed over to you, if you sign a release. I think if you do have that legal right you must exercise it, or else perhaps the attorney handling the negligence case would be kind enough to provide you copies. In these cases you need to be your own self advocate and you MUST get all details of your findings and look up all medical terms until you really understand your case. In general, the only people who do well with pelvic injuries are those who self-educate and become their own health care coordinator.
Personally I have never heard of a pudendal nerve stretched beyond repain although maybe there is such a thing. From what little I know, it almost sounds like they are guessing that it is stretched beyond repair because the EMG has not improved over 6 months. Well if the nerve is entrapped someplace and just needs to be released, there would also be no improvement in the EMG. I could be wrong...maybe it is possible to stretch a pudendal nerve beyond repair and to do a definitive test to determine that is what happened...but I am fairly familiar with the topic of pudendal neuropathy and have NEVER heard of that before. Any other time I have heard of a pudendal nerve injury that occurred in childbirth and then persisted, it was due to entrapment.
Maybe someone else on this board has heard of a pudendal nerve stretched beyond repair(???)
But I really think your next step for getting help from patient self-advocates like us, is to get ahold of your medical records so that you can report your actual medical test findings so far. My hope is that these people do not really know what they are talking about, and that the nerve is entrapped...this would definitely be a brighter outlook than the prognosis you have been told!

Hi and thanks for the reply.

Yes I am in the middle of getting my medical files i have been trying to get them since July to my solicitor as i am getting the medical negligence case underway but they really are taking their time with this constantly on their back but the health service is a joke in this country so il just have to wait, no i was told it is a very rare thing to happen but its not uncommon i know its not trapped anywhere though too they did say that. very odd i just think they are very under educated here to be honest.

Hello L,

What happened to you is very unfortunate and I'm sorry you are going through such a difficult time. Many women have some degree of pudendal nerve damage with vaginal deliveries -- just not to the extent you have. For most women the problem tends to show up slowly and they have more problems with incontinence as they get older. But for you, it sounds like the birth canal was just a bit too small for the baby.

Here is a link to an article regarding the different types of nerve injuries.

http://emedicine.medscape.com/article/249621-overview

Both compression and stretch injuries are listed and I don't know which you have -- I think either is possible. It's a very technical article but could help with an explanation as to why you have been told that your nerve was stretched beyond repair. According to this article:

"The internal anatomy of nerves permits the nerve to stretch approximately 10-20% before structural damage occurs.4 Stretch injuries or severe blows to a nerve cause axonotmesis. In axonotmesis caused by stretch injuries, axons over long segments of nerve are disrupted."

One advantage you have is that being young you have a much better chance for the nerve to heal than an older person would. There are women who have posted on the forum who got pudendal neuropathy from childbirth and have gone on to have pudendal nerve decompression surgery and are now either cured or doing much better.

So, is there any possibility that you could see one of the pudendal nerve experts? If it turns out you have an entrapment or compression, surgery might help. Or if it is a stretch injury that is not repairable, maybe one of the world experts on pudendal nerve neuro-stimulation would be able to help.

Violet

Thanks for your comment there violet. Really helped me. ye its definately stretched according to the doc. i guess i will probably have to see a specalist in america or england or where ever i can get one because i know there is none here in ireland. you have all been very helpful xx

hello mammyof1, i'm sorry to hear about your tragedy, but how do they know your nerve is streshed beyond repair? Did they find out by RMI? And what symptoms do you have? Does it hurt?

Hello Mammy,

So sorry that you are enduring all this at such a young age and with responsibility for your baby by yourself.
Regarding the stretched nerve, I had PNE surgery and my surgeon stated that my nerve appeared stretched also. It was entrapped by pelvic ligaments called sacrospinous and sacrotuberous (SS and ST). I asked him if this meant that I had less chance of the nerve healing and he stated that it did not mean less likely to heal. Also I am much older than you are and had symptoms for almost 3 years before surgery.

There are specialists for PNE in France and England. Amanda who is a moderator on this board lives in Dublin also, and she was able to have surgery in Nantes, France. I am sure she could advise you on how to arrange to see these specialists.Meanwhile, do your doctors have you on any meds for nerve pain?

Jeanie