CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
mom
Posts: 181
Joined: Sat Dec 04, 2010 3:15 pm

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by mom »

KC17,
thank you for the reply, my daughter has described her "itch" as like a needle pricking feeling, and a mesquito bite, and a burning all combined, so I am just trying to identify. There are definitly times I can see that underwear that are baggy inbetween her legs really irritates her. But she refuses to try not wearing them as she says it just doesn't feel right...

Pianogal, I can't recall...was or is your nerve entrapped at the dorsal location?
I am wondering if the dorsal nerve being affected is what cuases the itch clitorally???? IDK
MOM
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by pianogal »

Hi Mom,
Yes, I do have dorsal nerve scarring as seen in Dr. Potter's MRI, right greater than left. My scarring is at the base of the vulva (which I guess is near the lower end of the vulva although I am not sure.)
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
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Karyn
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Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by Karyn »

Oh, lil! I'm so, so sorry for what happened to you! Personally, I've never heard of such a thing but I would like to offer you a hug and whatever support I may be able to provide.
Going out on a limb here, but are you familiar with Dr. Dellon or Dr. Aszman? I'm hoping other community members will chime in soon to express their thoughts on your situation.
Welcome to HOPE, lilshell37. Hopefully, we can get you pointed in the right direction!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by Karyn »

Oh, lil! I'm so, so sorry for what happened to you! Personally, I've never heard of such a thing but I would like to offer you a hug and whatever support I may be able to provide.
Going out on a limb here, but are you familiar with Dr. Dellon or Dr. Aszman? I'm hoping other community members will chime in soon to express their thoughts on your situation.
Welcome to HOPE, lilshell37. Hopefully, we can get you pointed in the right direction!
Warm regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Robyn
Posts: 49
Joined: Mon Dec 27, 2010 6:45 pm
Location: Patrick Springs, VA. USA

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by Robyn »

Dear Lil,

I read your post with horror. What kind of monster did this to you!!!!!!!!!!! You have got to report them to the medical licensing boards.

I agree with Karyn. Get in touch with Dr Lee Dellon in Baltimore, MD. He is a very talented nerosurgeon. Are you close to him?

I believe nyt who posts on here has an appt with him in late February. Maybe she can have more input.

I'll add you to my prayer list,
Robyn
VA-USA-6/03 Horseback Accident-Broke Pelvis at Pubic Ramis-Left
By 12/03 had ALL signs of PNE. HORRIBLE BURNING when sitting
24 doctors & image studies found nothing over 7 yrs
Found this site 10/10 At last I had HOPE
PN Block 9/10 ALL areas of burning numb for 24 HRS
2 more blocks-no lasting relief, but numbed all "burning" areas
Pulsed Radio Frequency 01/11 did nothing
Surgery 3/3/11 Dr Dellon Balto, MD - Greatly reduced pain right away. Currrently in post-op healing phase.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by pianogal »

it makes me sad that a lot more of these type of cosmetic surgeries are becoming popular because I imagine they will cause women a lot of pain which they are unaware of when deciding to do this type of procedure. I know a lot of these surgeries go on in countries like Africa (genital mutilation). http://en.wikipedia.org/wiki/Female_genital_cutting

The wiki article above mentions two docs who repair these in women in Africa who suffered. I think Dr. Aszmann in Vienna and Dr. Dellon may also be good resources.

Praying for you.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
grerichm
Posts: 44
Joined: Sat Dec 11, 2010 5:41 am

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by grerichm »

Hello to all, my name ios gregg and i am from philly... i have read some of your posts and it seems horrible, to LIL, you should hire a lawyer at the very least, because what that doc did was completely wrong, its unfortunate that you will have to go down the legal and medical roads at the same time, but do it, this doc does not deserve to go unpunished.

I also suffer pain through the shaft of the penis, so similar to the pain you all feel in the clitoris, its brutal and really dampens your sex life, and emotionally is painful, with negative thoughts. I have them as well, and my wife has been supportive, but nothing will take the place of becoming whole again. Keep pushing forward, and keep hope alive...thats why we have this forum. I wish you all the best, my prayers are with you. good luck
Gregg
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by A's Mommy »

lil,

Please don't leave the forum. Somehow, someway, we should be able to help you get in the right direction. My heart goes out to you. My advice would be to ask the doctor's office or hospital where you had your procedure for all your medical records, especially consent forms. If there is no mention of anything about removal of all the tissue around the clitoral hood, or something like that, I would say that's grounds for a lawsuit. Then again, I'm not a lawyer but my heart just goes out to you. You went in to get fixed and were butchered, literally. I'm so, so sorry. Please know you are not alone here on HOPE. ALTHOUGH some of us may not have your exact pain or symtpoms, we all are in a great deal of pain and are meant to be here for eachother. Don't give up.

Love,

A's Mommy
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Emily B
Posts: 186
Joined: Sat Sep 18, 2010 1:21 am

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by Emily B »

Oh, lil. My heart goes out to you. Please don't give up. You WILL find a good, honest doctor that will be able to help you and make you better.

Please report this monster to your state medical board. You might just be able to save other women from the same fate. Other woman may have already reported the doctor. Medical Boards sometimes need multiple complaints before they can commit staff and time to investigate. (Sad, but true.) If you decide to hire an attorney, get one that specializes in medical malpractice.

Also, I would recommend requesting copies of your medical records BEFORE reporting to your medical board and BEFORE your attorney sends out his/her letter of representation. (That's the letter that lets the doc and facility know that you're now represented by the attorney.) The reason? Things have a way of "accidentally" disappearing from medical files when requested for legal reasons. Or, they get altered.

When you request your record, just act like it's no big deal. Say you'd just like to keep a copy for your home records so you have it for any future docs you might see. If they say they'll just send the copy directly to the docs you'll see, act like you're doing them a favor and say that since you wanted to give a copy to your primary care doctor and your gynecologist, and you want a home copy too, it would be easier for you to make the copies and give them out. Tell them you're happy to save them the work. Then you'll have the best chance at getting a copy of the REAL records.

Our thoughts are with you,

Emily B.
jamiegross
Posts: 43
Joined: Mon Feb 14, 2011 4:06 am

Re: CLITORIS BROKEN DAMAGED FOREVER :''''''''''(

Post by jamiegross »

I know this is a little late.. im new to the site and have just been reading over old posts and they are very relatable

I was literally just thinking last week that my clitoris is dead.. missingmylife, has it stayed that way since you last posted?
I've never been able to orgasm ( im 20), but i was able to enjoy sex and forplay up until this past summer.. i really want that back :( but i guess we just have to accept what has happened, fight to change it, and make the best of every situation..

"you can't stop the waves, but you can learn to surf"
Pevlic pain 8/15/10
Diagnosed with PN 2/11
Currently taking lyrica & cymbalta, PT, acupuncture
ganglion impar block -triggered lower back and sacrum pain
botox injections- caused coccxydynia
Deviated my coccyx 6 months prior- had a horrible case of posion ivy right before symptoms began, connection?
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