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found out what the problem is  after all this time..pudendal nerve damage found out what the problem is after all this time..pudendal nerve damage

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Unread 07-30-2003, 11:02 AM
found out what the problem is after all this time..pudendal nerve damage

hi girls, it has been quite awhile since i have posted anything. as some of you remeber from previous posts i was diagnosed with ic of the bladder which has turned into a complete nightmare for me,i am now 13 months post-op and finally i have found an answer to my nightmares.i lost so much weight with my inability to eat because of my has made it worse. however i have managed to sustain myself through a restrictive diet to help myself survive. i found i can eat a little meat but plain and grilled.lettuce.plain noodles.bread with no citirc acids.and frozen peas cooked.rice plain. some american cheese and alittle and then a little popcorn plain but air popped. thats my whole diet.anyway i have been going for dsmo treatments for 5 weeks now and one more left to go. unfortunatly they havent helped.they seem to work for a day or two then back to square one.however i have been suffering with what fels like a yeast infection for close to a yr also besides the ic nad it is in and day out where some days i am in tears over it. it has impaired my life as well as my intimate life besides the ic. everydr i have gonto for this has said there is either nothing wrong with me, i need theray or they cant help me. well, my new uro finally found out that i have severe pudendal nerve damage. its the nerve that is atached to ligaments in the pelvic region i was told. and that nerve is responsible for sensation in the female region. what causes the damage is vaginal hysterectomies or any type of surgery done in the pelvic region also.the nerve is usually knicked or severd during surgery. when the nerve is damaged it cuase itching sensations, burning, bladder sensations like you have to pee. frequent trips to the bathroom. urethal irration. clitoral pain,anal pain. picking sensations,leg pain as well and lower back pain as well. most woman get diagnosed with other things because this is usually over looked and actually this is the problem for many. i had a vaginal hs as well as laporocopy all these months i am losing my mind thinking maybe this is all in my head after all. amy be i do need therapy.well here is my problem. ther is no fixing it. i was offered nerve blocks to the pudendal nerve which are not pleasnat. it numbs the pelvic region all the way down to the thighs. it desensitizes you. i would have no sensation to know if i ever needed to use the bathroom.or i could have a clitoral block which still will have the same affect but not numb my thighs.or have what he called a pace maker put in my body if all else fails.i am devastated over all of this. any of thiese treatments a mortifying. however i cant take med because i am chemical sensitive. he said the one that would help are neurontin and elevil..but i cant take any thing...i am too highly sensitve. plus one more fact..i have to have my last ovary out some time in the near future because it is all cystic and i have endo on it he said..anyone out there ever hear of the pudendal nerve or have damage done to them like this because of surgery? i would love to know. i did tons of resarch on this situation in the last day or so and i understand what it is and how it happened. but if anyone has these problems down below like i do please do listen to anyone that says its all in your head..or if a med isnt working and nothing seems to work for a problem down below insist that the dr look into this nerve feels like yeast infections or vaginitis but if looked into deeper and not dismissed chances are for others that it jus might be pudendal nerve damge..always..chris
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Unread 07-30-2003, 11:51 AM
Chris -

I somewhat understand what you are going through. To be in such pain and be told that it is all in your head. I had a doc tell me and my family the same thing when I was 18 years old and gave me antidepressants. Several years later I was diagnosed with Endo, which is what caused my need for a LAVH.

I am praying that something can be done for you. There has got to be some sort of research being done out there than can help.

I am sending hugs your way. Thank you for this post. Hopefully it will help someone out there!

God Bless!
Unread 07-30-2003, 11:58 AM
found out what the problem is after all this time..pudendal nerve damage

just wanted to send some 's your way sweetie.....I'm sorry to hear that you have this.......but I guess at least you have a name for it now and can go from here....hang in there and know that we care!!!
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Unread 07-30-2003, 12:38 PM
found out what the problem is after all this time..pudendal nerve damage

I am sorry you are having a rough time of it. I am glad you found things you can eat and that do not cause too much trouble for your bladder.

I have been told I may have pudendal nerve damage. I am not sure though because I do not have any of the symptoms I have read about on-line that are characteristic of the problem. I do have alot of pain internally at a spot where the pudendal nerve and the obturator fascia apparently "meet" along the pelvic floor... that is why the specialist thought maybe the pudendal nerve is involved.

When I discussed this with the specialist he suggested that it could go all the way back to the vaginal birth of my daughter (I am a tiny person and she was a big 8# 9 oz baby with a big head)... I had a terrible time with my pelvic floor and it took many many months to recover feeling and muscle control... His comment was that it can be damaged many years before symptoms start to become bothersome. I am sure surgery can injure it also and the PT told me that tight or spasming muscles can also restrict it and pinch it causing pain (I think it was the pirigormis and the obturator muscles but I can't recall for sure.. maybe that is part of my problem.

ANyway, I hope they can help you. It is too bad you are unable to take the meds to help nerve damage/pain.

Unread 07-30-2003, 01:18 PM
thank you for the replies girls

thanks so much for the replies girls.i knew i would once again get support and help here.sblumm..yes child birth can cause this as well. and also accidents, even injuries that you can sustain below there riding a bike can cause this nerve damage. unfortunatley in my case i started with this problem 6 months after my hyster.never had it before in my life. it also causes constipation which i have had real bad bouts with since my surgery..thought that odd then..but now i know why..again thank you so much and sblumm i am so glad i am not the only one here with this.not to say i am happy you may have the same problem.but i wasnt sure if anyone even herad of this kind of nerve damage...chris
Unread 07-30-2003, 02:00 PM
found out what the problem is after all this time..pudendal nerve damage

Yep, I've been told I have nerve damage also. So far, I haven't been able to find a doctor who can do a test to confirm this. It's just been thru a process of elimation. Even had some nerves removed and yet the pain and swelling persists. I am on the duragesic patch for pain, which helped for awhile. But currently pain and swelling is flaring very bad and nothing seems to be helping. There have been several sisters who have passed thru the Road who have had this problem. You can do a search and you will find some posts.

Unread 07-30-2003, 02:14 PM
found out what the problem is after all this time..pudendal nerve damage

{{{{{{{{Chris}}}}}} Many, many s hun! I wish I knew what to say to you. My is so sad. Please don't give up.....there has to be something they can do. I will say some prayers and hope God shines his light on you and the doctors for a solution. Hang in there sweetie!

Unread 07-30-2003, 03:31 PM
thank you kim and emily

thank you kim and emily for being there. oh kim, sweetie you have been through the ringer too so i see. my gosh, i guess i am not really alone with this problem and even with nerve damage i still have people that can relate..thank you know what i am experiencing then?its terrible and agonizing as well.. just when i think the pain and irritating sensations are susiding, there it is again with a vengence,,,take care kim ok? and emily your a sweetie, good to hear from you again...chris
Unread 07-30-2003, 08:00 PM
I'm so so so sorry

I know how upsetting a new diagnosis can be. But I am also unbelievably glad you are finally getting some answers after all your pain and suffering. And also finding a doctor who has listened and cared and is smart enough to figure it out!

I have possible nerve damage (don't really know which nerve, though) also, resulting from a procedure called a presacral neurectomy we tried before my rounds of Lupron and the myomectomy and then the hyst ... They actually did purposefully sever on of my nerves during this procedure. Immediately after the surgery I woke with tailbone pain and (I'm pretty embarrased, but I love you all so much, I'll be honest) increased and painful clitoral sensation. I have also been very constipated since the surgery, a problem I never had before. These symptoms have actually been masked a great deal by all the pain and anti-depressant medications I have been taking for the pelvic pain and chronic arthritis pain. It has been less of a worry for me than these other things, and sometimes it just scares me so much I don't want to deal with it.

So Chris, honey, you are not alone! We will deal with this together. I am seeing my gyn in August, and plan to be firm about following up with this. I have found that the anti-depressants I have tried (zoloft and effexor) and neurontin seemed to provide immediate lessening of the sensations, but honestly, I'm with you. Who wants to purposefully deaden their clitoral sensation? And I also have bizarre sensivities to medicines, so maybe we can find something together that works??

Keep up the good fight! I am very proud of you following through and getting answers!
With love,
Unread 07-30-2003, 09:05 PM
found out what the problem is after all this time..pudendal nerve damage

I'm so sorry this has happened! I just can't imagine expecting to come out shining, only to have THIS?! Goodness.
Many good thoughts, prayers & vibes your way for sure...

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