I just need to put this out there because no one understands it unless you have it. I hate to say it but not even those that support you the most. I've been in such agony that I've actually been dry heaving and throwing up at times from the pain. It's truly now taking over every component of my life. I'm trying so hard not to lose hope and trying to remember that the lord has got this for me but it gets harder everyday. Lately at night I've been praying that I wouldn't mind if I woke up on the other side and that's not me. I'm usually very strong about things and I'm usually the one who gives others words of wisdom. I'm really beginning to lose it. That's all I have to say. Thanks and God bless us all for enduring such horrendous pain. Deb😿🙏😢
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Debra13
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I did and the solution was more medication for the throwing up. That makes 20 pills a day. That's always there solution. Had over more medication. I'm just so frustrated and really tired of this. It's such a crazy illness for all of us. I'm sorry we all suffer and I've learned that every one of us are so good and don't deserve this. It makes me say why all the time. I guess we just have to trust in God that he wouldn't give us what we can't handle and it's for a purpose. I'm just still waiting to see the good purpose. I feel really bad for all of us. Deb
M'y dr does the same..gives more medication Deb. Are you running a fever with vomiting? Best take your meds after youve eaten. I was told adhesions cause vomiting too.
No fever. But I'm sure I'm probably full of adhesions. I had partial hysterectomy a year and half ago and several other vaginal surgeries that has made PN worse. I never thought of that causing the vomiting. Thanks. Deb.
did you have any mesh in your surgeries?,I'm wondering if my mesh has caught nerves and if to have that out before PNE surgery,but i see from your surgeries that pain can get worse.its hard to imagine worse pain
You are in so much pain to Barbara. It really stinks for all of us that is why I made a promise to myself that I would try all procedures as long as they wouldn’t make me worse and put me at any risk and report back to all of you. Like I have posted recently. I just had a procedure but I’m waiting the full 4-6 weeks before I give my results on this site good or bad. I’ll keep you posted Barbara and everyone on here. God bless the suffering. Deb.
I've had radio frequency ablation 3x if thats what u are talking about,first time by coccyx,it helped lot as i could not push out the area behind rectum,by coccyx,afterwards i could.the next 2 times little improvement.i had 1 3 weeks ago and unfortunately my vaginal pain is back so..well ive had to up my pregabaline.i had a steroid s3 injection in oct which numbed for 2 hours.my pudendal blocks just numbed for couple of hours,about 7 of them
Debra. You are not alone when you say that you have thought at times that you wouldn’t mind if you didn’t wake up in the morning. I’ve been there lots of times. Things have improved for me somewhat in that the pain Mg Dr I see does give me a script for Norco. I don’t like having to take a narcotic but at least it keeps the pain manageable half the time. It’s better than nothing. I wish that none of us had to feel this sort of pain and others just can’t possibly understand it unless they are experiencing it. So we have to keep praying for one another.
I agree. I pray everyday for everyone on the site. I take so many pain medications been for a long time. I guess I'm just frustrated suffering for 17 years now In my eyes is long enough. When do you say enough is enough. Procedure after procedure. Failure after failure. When is enough. Enough. All I have left is my faith that's what keeps me going everyday. Thank you for your reply. I do pray for everyone and every time someone replies to me I say a Rosary for them because now I have the name. So you now get my next Rosary Chica1943. God bless you and everyone on the site. Deb 🙏👍🤙🤞🤝
Hi Deb, I have suffered with some form of pain right from the age of six months when I had my first surgery 'a large ovarian cyst ' that almost took my life and I can't help thinking some days that it would have been good thing if it had done just that. I have now been suffering from chronic neuropathic pain in my pelvic area for 7 years and after trying almost everything there is out there nothing seems to help. Through my life I have had numerous surgical procedures done at least 11 and can't help thinking what did I do in a previous life to deserve this. Like you I have heard that God doesn't give us any more than we can cope with but I can honestly say I am coming to the end of my tether and find myself thinking of ways to end it all after all I am now 57 and was never able to have children so don't think I have anyone to keep going through all this for except mum, but when she's gone ?
I came home Friday from seeing my pain consultant with yet another plan, yet another nerve block. But this one is going to be even deeper than my previous ones and even though I'm going to be given a stronger sedation and local I am dreading it and can't help thinking this one isn't going to be of any benefit. But then hey ho you never know you've got to try anything, this time there may be a miracle and I may have a life at last!! I may be able to go places other than just my doctors and hospital.
Oooooh sorry Deb here I am supposed to be giving you support and I've found myself going on about myself , sorry !
Have you tried any controlled drugs? I am on high dose morphine and know without it I wouldn't be able to function along with the pregabalin and many other drugs I am taking.
Deb I know it's easy for me to say as people keep saying it to me all the time ''keep strong and keep fighting on, never give up''! Keep on at your doctors as my mum keeps saying 'that's what they're there for'.
My God. I completely understand. I got 2 nerve blocks a month for a total of 3 days of little pain. I'm so sorry. I'm 44 and could never have children either. It was taken from me like you but then finally really taken with a partial hysterectomy a year and a half ago. I completely understand how you feel, my dream was to have a great career which I lost because of this and to have the perfect family which I could never have. I got this when I was 27. When I was younger I would get severe urinary track infections and I was also sexually abused from the ages of 5-12 by a friend of my brothers. I know that can play a role in this monstrosity of an illness but doctors have told me it's from a fall I took from a very high surface onto my butt. I kinda learned how to live with it for a while but it would still interfere with my daily life. I functioned but not like a normal person does yet I could still work a ten hour day as a physical therapist but only 4 days a week. Where my life took a turn for the worst is I went into NYC looking for a doctor to give me Botox injections and found a doctor who said he could cure me. First red flag. Keep that in mind everyone reading this post. There is no cure unless your God himself. The doctor misdiagnosed me vulva vestibulitis and performed a vulva vestibulectomy on me. That was the end of my so called functional life that I had before this surgery. That was 4 years ago. He completely disabled me. And the horror went on from there. Yes , I'm on very heavy duty narcotics but I think the doctor has to change it or adjust the dose again because it's not working at all. Life as I use to know it is not the same and prior to the age of 27 I don't remember what it is like not to feel burning between my legs 24/7. I pray for all of us they will find a cure but I really feel we are last on the list. God bless us all. Mindbender. What is your real name so I can add you to my Rosary today. Thank you for sharing with me. 🤝👍🙏🤙🤗 Deb.
Sorry Deb no need to explain your symptoms I caught up, I'm not too good navigating this site. I'm so sorry to hear that you have went from a semi-functional life to now being disabled by that Doc who performed the vulva operation. It's terrible you probably had such hope that you would be fixed. Bless you for saying all the rosaries for everyone, I am a lapsed Catholic, too many years to count though I am a spiritual person. I live in the UK its extremely hard to get prescriptions for the strong narcotic or opioid style painkillers now days. I get ibuprofen over counter and prescription co codemol, I drink wine on top when I'm really bad. It's not ideal.
This life has not been very fair to you Deb. So sorry that a monster sexually abused you at such a young age.
Thank you so much for your kind words. Sometimes that’s all we need to keep us going right. I’ll pray for you. I’ll keep you in my thoughts. I try to keep the site up on new things I’m doing. Right now I just go for 2 nerve blocks a month without the steroids and I’m sticking to the medication. It kinda stinks but it is what it is. We all need to hang in there. I do believe in miracles I’m still waiting for mine and the cure for our disease. It will come someday. I believe that. Thank you again and God bless you. Deb. 👍🤝🤙
Hi Deb again lol my name is Kim thank you for adding my name to your Rosary.
I thought my life had been horrendous having among other things being treated by two doctors who were struck off due to negligence but yours has been horrific and I am so sorry for you and I can understand how having your faith can get you through life. I had a good career I really liked but was eventually given early retirement due to ill health . Some days I'd arrive at work or home not knowing how I'd driven there due to such high medication so that employment was taken from me. So now I'm laid out all day at home with this illness on my mind.
I have a sister who has five children and they are her whole life but she just doesn't understand how I feel. All I get from her is children aren't everything but then she's got them hasn't she. I'm lucky if I see her once a fortnight yet she lives just 10 minutes up the road.
Oh I'm feeling sorry for myself. I just feel through my life ......health mostly.....that if anything could go wrong.....anything did go wrong!! It would take me forever to write it all down but to say this is the first time I have posted anything on this website I have got a lot of my chest!!
One of the things you said about having to have your meds looked at resignates with me because I have been told I am on the highest dose of morphine they are prepared to give me and I now know they aren't having the same effect they once did so it worries me to think where do I go next, because life is becoming unbearable now in fact it has been for a while now. I think I could live another 20/30years (doesn't bare thinking about) I can't live like this I'm climbing the walls now. Oh it gets better and better doesn't it. I just keep trying to hang on to my faith but I'm finding it harder and harder everyday, just keep thinking why me, why has he done this to me. Maybe one day I'll find the answer!!
Once again thank you Deb keep your chin up and thank you anyone else who reads this and a BIG thank you Deb for adding me to your Rosary 💕🤗
Yes, for a while there I had lost my faith just to be lucky enough to find it again in this awful world we live in. The funny thing is I always say to myself if I had to change something would I. The answer always comes back no. Let me explain. The pain has humbled me as a person. Yes not that I don't pray for miracles because believe me I say the Rosary just for that. Not to be fully cured just to be where I was 4 years ago and I could tolerate it. As far as your medication goes they can change the pain medication if need be if you are at the highest dose. I'm not a doctor nor should I be giving advice like that. Lol but that's what they did for a friend of mine. I haven't reached that point yet but I'm getting close to the highest dose of my pain medication, but they have me on 3 different types of pain medication including a patch. It really stinks. I never thought in a million years I would be taking medications like this especially when for 12 years I never did in the past. I just dealt with it and was using boric acid suppositories and taking a lot of vitamin D. It kinda stinks all of it. I'm trying hard not to lose hope and fight but it gets harder everyday. Please don't feel like you are telling a your story for nothing. I'm hear to listen. On this site we all are. You hang in there Kim and keep in touch. God bless. Deb🙏🤙🤝
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