vaginal total hysterectomy and now have nerve damage..

I don't know if you still check this site but I had a surgery three years ago for my endometriosis (my ex-doctor, on 5th avenue NY called it excision surgery) and ever since that day I've been in excruciating pain. From the moment I woke up I was in screaming pain. I just remember pressing on the morphine pump continously since I was on it for an entire 24 hours because the pain was so severe. But unfortunately that was not the end for six mths I was bleeding non stop, in excruciating pain and I could not even go to work, care for my daughter, or be with my husband. The pain was so horrific that I could NOT GET out of bed and if I did I would pay for it. To top it off after the surgery no other doctor would touch me and the current doctor continued to tell me I would get better even though six mths had already passed and according to him I should of been back to work in a couple of weeks. At most 5mths!!!!!

To make a long story shorter I finally found a doctor (in PA) that proceeded to say it was adhesions he operated and removed them. Two weeks later I was in screaming again. We found another doctor that did the study for Adept which they've done some studies that say it's helped patients to reduce the reappearance of adhesions about 20%-30% of the after surgery. Still that doctor in CT performed two more surgeries and still I was no better. Please be advised that during this course of time I was on Neurontin, Oxycontin, percocet, vicodin, ultrum, amitryptaline, well the list goes on... and now I'm on Methodone plus 3 other. Still 2yrs after the fact and I'm still in pain :(!!!!

Have you found any relief?

Considering that most of my doctors were male and never seemed concerned that every time they examined me I was under excruciating pain, nor did they notice (even though I was in tears and could barely walk after), nor did they seem to care!!! Though when they were doing the examination the pain would radiate from my left vaginal wall to my abdomen (JUST LIKE YOU SAID, I always found that to be so strange and if I remember their response correctly they would say something "like that can't be"!!!!).

After the examinations I would be in bed for about two weeks from the excruciating pain it caused (NOT EVEN THE PAIN MEDICATION WOULD HELP, SOMETIMES I ENDED UP IN THE HOSPITAL AND THEY WOULD HAVE TO GIVE ME A MORPHINE INJECTION). It was just awful until I found this women gynecologist and by that point I was crying and begged her to please not do a vaginal examine. So she told me that she was just going to look and that she was going to use a cotton swab and when she gently touched my left vaginal wall and I just wanted to jump. JUST THAT ALONE CAUSED ME TO BE IN PAIN FOR 3 DAYS EVEN AFTER DOUBLING MY MEDICATION. She was very nice and even called me BACK and told me that she had done some research and thought that it might a damaged nerve. I HAD NEVER THOUGHT ABOUT ANYTHING LIKE THAT!!!! ALL THE OTHER DOCTORS WERE SO PREOCUPIED THAT IT WAS EITHER ENDO AGAIN OR ADHESIONs (OR BOTH) THAT NO ONE EVER CARED TO LOOK OUTSIDE THE BOX. ONCE IT SEEMED LIKE THEIR MAGICAL HANDS DID NOT SEEM TO BE DOING THE TRICK THEY WANTED NOTHING TO DO WITH ME!!!!

Though I really thank the woman doctor for taking the time to research other possible causes she never did call me back and till this day when I needed documentation for my insurance company I could never reach her again to tell them what she had told me ( I don't understand the reasoning behind it though I guess it's another miles stone I've had to cross amongst this nightmare).

ANY WAYS AFTER SEEING A ANOTHER WOMAN DOCTOR THIS TIME A UROGYNECOLOGIST WHO SENT ME TO A PAIN MGMT SPECIALIST THAT SEEMS TO SPECIALIZE IN NERVE PAIN AND THUS PERFORM THESE PROCEEDURES/ SURGERIES TO HELP NUMB THE NERVES THAT GO FROM YOUR SPINAL CORD TO YOUR PELVIS. THEY'RE THREE STEPS OR MORE TO IT AND IF HE HAS TO BE REALLY RADICAL HE GOES THROUGH THIS FOURTH STEP. AS YOU CAN SEE I HAVE NOT GONE THROUGH IT YET BUT I WILL KEEP YOU INFORMED IF YOUR INTERESTED OR ANYONE ELSE WHO'S UNDERGONE ANYTHING LIKE THIS. YOU CAN REACH ME AT . TO SEE HOW THINGS ARE GOING.


UPDATE:

RECENTLY I WAS ASKED TO GO TO A GYNECOLOGIST TOO AND IT WAS A MAN AND HE WAS AWFUL. TO TOP IT OFF HE MADE ME COME BACK A FEW DAYS AFTER THE FIRST EXAMINATION THAT LEFT ME IN TEARS THOUGH MAKING ME THINK SOMETHING WAS WRONG AND WHEN I FOUND OUT HE JUST CHARGED ME ANOTHER $600 WITH NO EXPLANATION TO WHY!!!! TO TOP IT OFF THAT HAS CAUSED MY PAIN LEVEL TO INCREASE SIGNIFICANTLY IN THE LAST TWO WEEKS. BUT I'M STILL HOPPING THIS NEW DOCTOR WILL HELP ME AND WE CAN FINALLY
COME TO A REAL SOLUTION.


HOPE THIS HAS HELPED YOU AND ANY ONE ELSE WHO THINKS THEY ARE ALL ALONE OUT THERE!!!!!

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If you have found something...anything...for nerve pain following complete hysterectomy please tell me. I can't live the rest of my life in this constant pain

http://www.pudendal.com/

go to this website and read about pudendal neuropathy
that is what's wrong - it is nerve damage

I have been unable to experience sex for four years now. I had a vaginal hystectomy (total) 4 years ago-what a nightmare. I can not have any penetration. The doctor's don't care. I was able to get two of them to verbally admit it is permanent nerve damage and there is nothing they can do for me-but when I collected my medical records from them, there was no mention of nerve damage. When I questioned them about this, they refused to put in in writing. The doctor's do not want to take responsibility for the nerve damage. They also damaged the area around my anus, causing me not to be able to create a bowl movement; I will let you use your imaginations as to how I get the job done; give you a hint; rubber gloves are involved. I have been in a wonderful 11 year relationship and the man I am with has been very patient with this; but it has destroyed a very important part of our lives. If this was a man's penis that was getting damaged every day by doctor's; I can assure you, there would be stop to that. We have viagra but womens insides are being ripped out of our bodies and our hormones are of such significance in so many ways and yet we are all still suffering so greatly with no new ways of operating and care. The doctor's are abusive while we are crying our eyes out. I will try some of the suggestions you have made and see if I get anywhere; my hopes are not high-sorry to sound so down; but I am. Peace to all of you out there.

i have been in chronic pain after hysterectomy and my doctors think im makin it all up, i cannot wee or bo or even pass wind, they say nothing is wrong and look at me like im a fool, i look ill all the time and the pain is unbearable. i did have a bleed after surgery which i know is the damage whats been caused, but they wont take responablity for it, i have constant infections and sleep all the time, i losy my partner friends etc. i also have begged for help and kicked off with them as i know my own body, but nowmy doctor has said if i am abusive or load again, its the end of doctor patience relastionship. i dont have the strength to fight any more and dont know what to do, i want to be me again and get my life back. im only 41.

Hi Dorey-I'm so sorry for the pain and sadness you are experiencing. I too am going through it. I posted right before you-dakota. I tried a new doctor in a new state and ended up the same way. She would not take any time to listen to me-she said in a snotty voice "you're the one who had the hysterectomy-no one made you do it". My reply was-the doctor's were supposed to be trained and make good decisions and supply the correct information which they certainly did not. Needless to say I wanted to rip her head off with my bear hands-who would not after being abused for 5 years now from so many doctors. They do not want to hear it. They want to do as little as possible and collect their money. I have found the women to be just as cold as the men. Doctors are doctors-sociopaths-they have no care what-so-ever. I wish I had a positive answer for you Dorey-I don't. Just know there are other women out there that do understand how you feel. I know your pain and I most definitely understand your anger. I am right there with you. I had no choice but to tell my partner of 11 years that he deserves to have sex, so therefore, he must find a woman who can. We are roommates now but that's all. WE have seperate bedrooms-he still looks out for me but is going on with his life. Try and explain that to a doctor-they don't care. Well, thanks for listening and sharing what you are going through-my thoughts are with you and all the women who are operated on incorrectly and then abused by doctors-their lives never the same again. My heart goes out to you. I do hope, by some miracle, you and I and others find, at the very least, an understanding doctor. yeah, right. Good luck Dorey - dakota

hi, tnks for yr reply, i am that swelled up inside i cannot wee or bo, last resort is to write to a morning programme, but am scared that they will think i am making this up to, i have been left without a voice or brain any more and no one will help, bad mistake on my part for which i thought would make my life better, will not stay like this for the rest of my life, only 42 :-S

Hey dorey - Man-do I relate to that. I have read hundreds of entries-thousands of women are suffering just like us-and yes-they all want to say it's all in our minds so that doctors do not have to take responsibility. I believe you-you're not crazy! I did it because I thought my life would be better also-wish I could turn back time. By the way, I have the same problem you do. The newest doctor I went to at least admitted that when they do the hysterectomys they sometimes "nick" other organs including the rectum; therefore, there is no muscle control. Some women have lose bowels-but others, like me, can not go at all. My muscles will not push out since the hysterectomy. I must use rubber gloves and do manually-Isn't that great! It took me 3 years to tell my boyfriend I was so embarressed. I hid it well. The doctor heard all of this and just dismissed me-see you in a year she said. How professional and delightful she was. I hear what you are saying about not living your life like this. I wish I could say something very inspiring-but I feel the same way you do. I had this done at 46 years old and have not had intercourse since. I don't want to live this way either. We both feel cheated out of life-I understand. If I could get enough energy up to try another doctor-if I do I will definitely let you know-especially if any answers come up. I send my good energy to you Dorey-you didn't deserve this and neither does so many of us, but here we are. Feel free to vent to me-it is always ok with me. I understand-I do. Talk with you soon. dakota

Dakota and Dorey,

Have you heard of Alpha Liopic Acid? It is a strong antioxidant that has been found to work to reverse much of the nerve damage suffered by diabetics in higher dosages. It is inexpensive and if it doesn't help your nerve pain, it will still have been good for you will you gave it a try. I have just started using it for my vaginal nerve pain symptoms along with kegel exercises which I read could help and again, it can't hurt and they don't hurt me unless I try to do them while I am hurting already. I've read a hypersensitivity to yeast and fragrances/chemicals can make our nerve pain worse, so I'm going to start a sugar and yeast free diet and only use Ivory Soap on my body and clothes for 6 wks. I could stand to loose 15 lbs so once again, if it doesn't help, fresh veggies, eggs, fish, and chicken only can only help and I like Ivory Soap and detergent.

I suggest checking your state laws about recording conversations without informing the other party. In my state, as long as one party is aware of the recording (the recorder) then it is legal.

Hi Tracy! Thank you for your suggestion. I will give it a try. Sorry you are suffering too. I'm still in the exact same spot I have been since the hysterectomy. I have given up for now-but will try your suggestion. Yes-I must get off the suger and yeast products also. I have a question for you. You may not have this part of the problem at all-but in case you do. I have a severely dry vagina from the operation. I can't take estrogen/estriol; not even bioidential. I have bad reaction to it. I used special creams made up by the pharmasit for years with no luck-she changed it several times but it didn't work-only irritated me. Over-the-counter does not work at all-only irritates. I even used olive oil suggested by Dr. OZ. No luck at all. All I keep hearing is having to take high doses of estrogen/estriol-I can't even handle low doses. I am all out of suggestions. I wondered if you might have this problem and maybe have stumbled upon something I haven't tried yet. I even used special natural oil blends-no luck. Anyway, thank you so much for your suggestions and I wish you the best of luck on your journey with this. dakota

There is a prescription medication that I took named Evoxac. I have Sjogren's Syndrome and my Rheumatologist gave me samples to try for my dry mouth, eyes, and vagina. It worked well but and after about 6 months of taking it 3Xs daily I didn't have to use it anymore for almost 2 yrs. My insurance company now doesn't cover any portion of the cost and it is way too expensive for me to afford at full price. After researching it on a chemical level, I found it works on the body in the same way Alpha-Lipoic Acid does so hopefully it will help with the dryness also. I've also read about a medicine called Salagen but it causes severe sweating in most women who have tried it. Drink plenty of fluids and avoid dehydrating substances such as alcohol, caffeine, and antihistamines. Don't smoke. According to Ellen Yankauskas, M.D., director of the Women's Center for Family Health in Atascadero, smoking destroys estrogen in the body. Vitamin A, beta carotene, B vitamins, zinc, and phytoestrogens are all beneficial in treating vaginal dryness. Foods high in phytoestrogens include soy, apples, nuts, flaxseed, celery, alfalfa, and whole grains. You can get Soy supplements if you can't manage to get enough in through diet. I suggest you get a silicone based lubricant. I know everything you read and hear says water based lubricants but I have found the smallest amount of a silicone lubricant will last hours on hours during the day and doesn't dry out or usually need re-application during sex. I've found if I make sure and apply just a bit on all the areas inside my vulva and just a bit on my husband's penis, I don't tear or get that horrible, stabbing, burning, pain that happens usually at the very beginning of penetration, that will spread into my thighs and abdomen which could last for minutes or days. Good Luck Dakota, I'll report on my results on a weekly basis. Tracy

hi my name is ann i hve had this hurrendus pain just like yourself and feel i am going off my head with the pain have now been put on morphine drugs to help with pain and amitryptaline at night to help with the nerve damage

if u cannot prove the doctors have damaged you and make out its yr fault, u dont stand a chance, i eat a sandwhich a day and weight dropped off me and i have been left like this with no support

i am 4 weeks post op vaginal hysterecty and am exoeriencing severe relentless pain and pressure from my tailbone to my rectum. many many tests all negative. i have lost my complete total quality of life, sitting is excruciating. anybody exerience this and will it go away?