Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Are you aware of any other drugs that can help with the need to pee constantly feeling? I am just wondering what other options there are as I am not sure I am going to be able to keep taking the imipimene.
Thanks
Grace
Grace, there are other tricyclic antidepressants such as elavil or desipramine. Some of the SSRI antidepressants such as lexapro or zoloft may work too. Lexapro worked well for me.
J, your BM problems sound similar to irritable bowel syndrome. Have you ever been told you have that? Many PNE'ers suffer from IBS.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
tummydepressed wrote:Thanks so much everyone. I hope I didn't shock anyone; I would never do anything stupid and I do tend to be positive.
My biggest nuisance are the bowel movements. I have to plan my whole day around them. Because I cannot use a public toilet I can never be more than 3-4 hours away from either my or my parents home. (I cannot use a public toilet as it takes me 20-40 minutes each time and is quite messy).
I will go 3-4 times a day. If I am constipated I will still feel a strong urge, but only pass a small amount each time. Otherwise, I will pass a large volume each time.
Every movement leaves me 'sore' and seems to trigger a spark of movement and bubbling!
Is it the same for any of you?
J
Hey Violet - thanks for your response. I think it is pretty guaranteed I have some form of IBS. Possibly SIBO, which I know can be caused through constipation, so could be a result of my PN/Levator Ani problems.....
I want to die so bad, I dont know how much longer I can go long not knowing the outcome of this story of my hellish life, already have my casket picked out told my husband, God this is a nightmare, all because i said yes to a hysterctomy 2 years ago, and the doctorwas so fast to say ok. To much pain, to much loss, I cant have sex, i lost my hair from stress the pain and not eating, i have constant ringing in my ears probably from all the prescription drugs i am or from stress or malnutrition way back in august, i had a full head of beautiful thick curly hair, I HAD ALL MY HAIR IN september looking back at pictures even october stated falling out fast in novmber all thin i got dx with telogen effivuim its about 60% thinner than what it was and its going to keep falling out till may or could be longer God help me, o wait he dosent listen to me.
I have had to go through major withdrawals from getting of medications, i dont feel like a woman anymore, i feel like such a burden to my family and my poor poor parents.. but I cant hurt my daddy he is so hurt to see his daughter suffer like this and know that I want to take my own life from this awful pain and know losing my hair from this.. Im lost..
i tried physical threapy she made me worse, Dr Antalock hurt me so bad in August that is what through my body in complete shock and in so m uch pain in August, thats another reason I lost my hair.. I have made so many wrong decsions on this journey to help myself, I cant make anymore.. My husband my rock he loves me no matter what he has said, I cant cry anymore in fron of him and tell him about what I want for my own funeral arrangements, God this is just normal, I have tried antidepressants, but when you re in pain like this everyday when you have lost that sexual part of life when it was so good in such a big part of your life when the most sensitive parrt my clitoris is now gone, WHY would a person want to live, Pain, hair, no sex, burden, not knowing if I am going to keep making wrong decsions, so much aniety that pills will not even help me.. this constanat emergency broadcast system going off in my ear.. I have more reasons to leave this temporary earth that i can count on my fingers than i can good reason to stay here.
I know this is so hard to hear.. I have to be beautiful daughters.. but I gave my 16 year old anorexia cause of me, another reason for guilt, my 11 year old and I have not bonded the way we should becasue of this painful nerve condtion. God my church family is at a loss, my support on facebook is at a loss.. Im at a loss, like I told my husband no pill, no hospital, no more dotors I feel can help me, my mind has no hope with this, all the money we wasted on doctors, pills all the crying I have done the screaming, OMG I can honsetly I am scared to die,
I dont want to hurt my daddy, but I am so scared to live like this for the rest of my life, I cant even look in the mirror anymore, who is that woman?? where did she go?? I cant take long drives, the burning, the sitting, I COULD SIT BEOFRE I WENT TO ANTALOCK!! God HELP ME!! So many wrong turns I have taken.. And then therre is DR CONWAY, And Now I am suppose to go to DR HIbner you know he is my last one my last one, do I go do I take that chance Do i put all my hope all my faith in that one dr, just what if thats it no help, thats it Im done God this cant be happening..
I have suffered to much.. NO ONE EVER SHOULD HAVE A HYSTERCTOMY!!!!!!!!!!!!!!!!!!!! IT KILLED ME :,( SO SORRY YOU ALL HAVE TO READ THIS, BUT I NEED TO GET THIS OUT, I KNOW NO ONE WILL have no words to say, i know people are going to know who I am now on facebook and the support boards.. I love you so sorry I dont know how to have hope or think postive, i was strong, but things keep happeing to me and push me further in the ground...I know hair grows back, I know you can cover up this awful sound in my ear.. but whats next whats the next wrong turn, im running out of options :,( I want my husband to be happy, he only has one life he keeps saying he wants me, so scared the next thing will be he will leave.. he has had affairs in the past.. even with the woman across the street.. she is no longer there anymore but her house is.. god help me.. he has porn issues on the computer he travels.. see what i mean. Why???
Hi Missing,
I'm sorry we haven't been able to connect. I'll keep trying, though .
Hang in there, Sweetie. I promise you that it's possible for things to get better. PLEASE ..... hang in there!
Love and hugs,
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.
Dear Missing, please, please do not do anything to harm yourself. Your husband and 2 daughters as well as your parents will never get over such a terrible tragedy. CALL THE SUICIDE HOTLINE AT 1-800-273-8255 NOW. You have so many reasons live and this pain may not be forever. Love, Jeanie
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
It might be time to consider in-treatment psychiatric care. Nothing else you have tried is working, and it sounds like it would really help you if you could get your mental and emotional issues under control so you can work on your physical ones. I hope you will self-admit before things get any worse for you.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
I feel so bad for you after reading your thread. I started this thread because I felt bleak about the long-term. I share many of your concerns, but mine don't seem to as bad as yours.
All I can say to you is that something will change. It won't always be this bad. I have been in a similar position to this before with a different illness, but somehow the body/mind finds coping mechanisms, or changes the way it operates so that you can get through and at least a bit better.
Just keep coming on here for support. We can help each other along.
I know exactly what you mean about not feeling like a women. I don't feel sexual - my masculinity has gone. It is hard to feel attractive or even want to be intimate when you are in pain in related areas.
Just want you to know that there have been people who were on the verge of ending their life who went to Dr. Hibner and now they have their life back. Please hang in there, keep hoping, and try all of your options.
Hugs,
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
I'm so sorry Missingmylife....please listen to what Violet has said...things CAN get better and there is no reason to think of this as a life sentence. I think everyone in chronic pain has felt as you feel but the fact is that if you end your life you *will* never know what you have missed out on (getting proper help for your pain, seeing your children grow up and have families of their own, good times with your husband etc.) and, as a result, you would have hurt your family terribly. Just keep in mind all the people who have experienced what you are experiencing and have gotten proper treatment and have moved on with their lives...it is NOT a hopeless situation....please believe that.
