Nerve Damage since child birth a year ago :(

[Amanda]

Hi There

Dia Duit agus conas a ta tu?
Im so sorry to read of your ordeal following the birth of your baby...I can only appreciate how litle knowledge there is in Ireland about PN.
What hospital are you now attending? I can recommend Patricia Crowley of the Coombe as beig the only gynae who knows about PN....she recomended and arranged for me to go to France for treatment and diagnostics...via the HSE and the VHI.
Please feel free to email me and if I can help you out I will. Hang in there you are amongst friends.
If you would prefer to talk to me on the phone let me know via email or pm and we can arrange to talk anytime that suits you. I have had many treatment in France and Belgium and all were paid for by the HSE and VHI.

Slan

[Mammyof1]

hi hope, my symptoms are no sensasation to my bladder so i cant tell when i need to pee so my bladder just fills and fills and when i try and go the toilet myself its impossible due to the lack of sensation the only way i can put it is i dont know where im pushing from? so i cant empty my bladder right which has caused me to get several bad kidney infections (ive just cleared yet another one) and av to self - catetherize daily to try and prevent damage to my kidneys, i also have to test my urine myself for infection as i dont get any symptons of an infection i.e burning sensation when i pee and i only notice it when ive a fever and chills and severe pain in my back. ive the same problem with my bowels but there not as bad and do not cause any infection. yes i do have constant pain and i have ponstan for that and i have to take a preventative for an infection which has worked before but didnt this time as i still got an infection. but the only tests i got done where two emg's and an internal scan of my anus no other tests have been done on me. i dont think they have any other tests in this country and have no other appointments for tests in the words of my doctor i was told that there is no magic pill or surgery to fix my injury and that unless they could create an artificial sphincter there is no cure.


hi jeanie, thanks very much for ur reply it has been hard feel like ive been left in the dark and no one seems to understand my symptoms so im feeling a bit stupid to be honest.

hi amanda, i am under the care of holles street at the moment, can you make sense of my injury??? i really am mind boggled to be honest and just dont know what to do.

[pianogal]

Hi Amanda,
I am sorry you have to go through this!

I have never heard of the nerve being damaged beyond repair but lots of women get this problem from childbirth because their anatomy just can't handle it. although the fact that you have no sensation does seem to indicate that your nerve is seriously damaged.

Even one of the major PNE doctors, Dr. Antolak, told me his daughter got PNE through childbirth, but she's better now after surgery.

You want to get things taken care of as quickly as possible and not waste time with people who do not know about PNE (most doctors). Because the longer your nerve sits compressed (probably by scar tissue) the more chance that it will have a harder time healing up.

There's a new 3tesla mri in the states in NY w/dr. hollis potter at the hospital for special surgery in NY that is very helpful in pinpointing damage, but it sounds like you have damage in the alcock's canal region at least... which surgery can release.

There are specialists in countries near you and in the US. I went to Dr. Eric Bautrant in Aix-En-Provence france for my surgery... and am now seeing Dr. Hibner in AZ. there are many more listed on the pudendal hope website.

I will be praying for you.

ps- this would have happened during the vaginal birth for you most likely, not before... see this link:
See this link: http://www.pudendalhope.info/forum/view ... f=16&t=307

[Mammyof1]

hi All,

I havent been on this site in a while and i taught id just email again with new information ive been given about my injuries and see if anyone can understand it now or if im just a lost case! since been to a urologist with my bladder and been told ive to self catheterize for the rest of my life, they have sent me to a physio therapist to see if any exercise could help in any way with my bladder issues and since ive also been having terrible bowel problems too. ive had internals (back passage) and they have told me that my muscles are badly damaged and literally dont move. they have done ultrasounds etc to see the mucles attached to the bowel and have seen that when i do basic pelvic floor muscles that they dont move! i know have to use an emg muscle stimulator for 1/2 an hour a day to try and encourage the muscles to move. i am now going to be sent to another hosptial to a physio who deals with car crash victims and people with serious trauma ( i am still with a maternity hospital because this is where the injury happened) but they have noticed that im a serious case and want other specialists to work with me.

does this make any sense to anyone, is it in anyway simular to your situations or is it completely different?

thanks everyone for your help and i hope all is well xxx

[Celeste]

Even one of the major PNE doctors, Dr. Antolak, told me his daughter got PNE through childbirth, but she's better now after surgery.

Pianogal, did Dr. Antolak tell you who did his daughter's surgery? Surely a father wouldn't do this on his own daughter?

[pianogal]

did Dr. Antolak tell you who did his daughter's surgery? Surely a father wouldn't do this on his own daughter?

He didn't. But I wouldn't put it past him operating on his own daughter. He is pretty self assured.

[Celeste]

did Dr. Antolak tell you who did his daughter's surgery? Surely a father wouldn't do this on his own daughter?

He didn't. But I wouldn't put it past him operating on his own daughter. He is pretty self assured.

That may be, but you'd really think the hospital wouldn't allow a surgeon to operate on his immediate family member.

[OP?]

New to board so please excuse if it’s not standard format! I have one suggestion and 1 question

Suggestion: For ‘Mammy’ have you tried acupuncture? I am Dublin based and have been battling the alleged Medical 'Service' in Ireland with CRPS & PN for two years now, it’s not fun you have my sympathies. I am getting about 50% relief form good acupuncture - and I stress good, she knows what she is talking about and in fairness it was my Pilates tutor who referred me - I’m not sure of the board regs but you can contact me if you would like details

My query for all others kind enough to read is if anyone has developed PN form an adductor tendon insertion? Two years ago I was told I had Osteitis Pubis and the consultant told me he was to perform a depomedrone under fluoresence into the gap in the pubic symphysis - what he did (amongst other cruelties) was inject my adductor tendon at groin/vaginal area with depomedrone. Since then I have had a litany of horrific symptoms seen 12 specialists and have come down to CRPS and Pudendal Nerve Dysfunction? I can’t get a clear answer from any medic here but maybe someone stateside or elsewhere in the world had come across it? It makes sesne logically from my limited anatomical knowledge and I have had no other local surgeries that could have caused it or any other injury so am curious as to whether the adductor tendon insertion was the cause for anyone else?
Thanks in advance
OP?

[Violet M]

OP, haven't heard of that being the cause of PN but it's amazing you have been able to narrow it down to one particular area. Do you know what caused the adductor tendon insertion injury in the first place?

[OP?]

there actually wasn't an adductor tendon injury - they did the insertion by 'mistake' - I was diagnosed with Osteits Pubis by mistake also - some mistake! Have spent thousands and two years in agony going from 'specialist' to 'specialist' and have ended up with CRPS and PN diagnosis. From the post insertion procedure site bleeding and bruising I am trying to see if the insertion caused the PN as it fits anatomically......