Most of you that know me also know that I get 2 nerve blocks twice a month without the steroids only with the anesthetic. Well the last 2 that I got didn’t even last a day. In fact it felt like only my left side was done. I just got one done yesterday and the pain is creeping back and because I know what to expect my stomach is killing me and I feel like I’m going to start to vomit now. This isn’t unusual for me because this occurs when I know the pain is coming back. It comes back with vengeance and I can’t cope with it. Not to mention that my interstitial cystitis is flared up and I’m in so much pain from that. I’m really getting tired of this as I know a lot of you are out there. When I talk to so many of you personally I always tell you how you have to stay strong when in reality it may sound like I’m such a tough girl fighting for all those years but I’m starting to lose it. I try to stay strong for my family and my husband but inside I’m beginning to crumble. I don’t sleep and can’t eat because I’m afraid to have bowl movements when I can and frankly I try to drink but it’s difficult with the interstitial cystitis because it burns every time I urinate. Not to mention urinary retention with the fact of loss of control too. It’s amazing. Then you have the nerve pain and if your one of the lucky ones like me you are blessed with PGAD. Only my PGAD isn’t pleasurable it feels like a botox needle jabbing me constantly in the clitoris for about 4-5 hours which is followed by a beautiful sensation of increased burning in the vagina and the rectum. That’s just part of my symptoms. But yet I still fight every day. I still get up. Sure I often say death would be so much easier but I would miss to many things here and frankly I don’t want to live an eternity in hell. Yes I’ve prayed not to wake up to. So when is enough enough. Frankly I’ve just had it. I can’t go on anymore with this pain. Something has got to give. Someone out there has to have a solution. I’m tired of procedures and pills and Ice and compounded meds that make me like a zombie. I’m sure some of you feel this way. I want my life back. I just want my life back. Now that I’m hysterical crying and vented all I can say is. I’m not giving up and I’ll pray every day for a cure and won’t stop testing procedures for all of us until I find one. God bless you all and stand strong Deb. 👍😔🙏
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Debra13
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Thank you Anne. You are my good friend. I’m so glad I met you and as crazy as this entire thing is I would have never met you if I didn’t have this so something positive did come out of this. I met you. Thank you for always being there when I need you. You are a true friend Anne. Lots of hugs Deb
You are at your breaking point....totally understandable. Pain in our sensitive genital area HURTS!
Have you ever been offered Hydromorphone for pain? I ask because it is the only opiate that helped me without any cerebral effect. I want my wits about me! I do not want to be zoned out. Anyways, it helps severe pain but it can be constipating. I HAVE TO keep hydrated when and if I use it. Aloe Vera juice is great for constipation.
Do you think you have muscle spasms? Magnesium bisglycinate supplements may help. Stress may be causing your blood sugar levels to rise because more than the normal amount of cortisone is circulating in your blood. Chromium supplements regulate blood sugar.
How is your blood pressure? Do you eat beets? They lower blood pressure.
Pineapple has an enzyme called bromeliads that help with pain. Eat it twice a week.
Make curries and add extra turmeric. Turmeric is a natural anti- inflammatory. Curcumin pulls help to.
Are you using a good nerve pain modulator like Amytriptyline or Nortriptyline?
Deb I am so sorry the injection didn't help longer. I feel your pain. I truly know how you must feel. We are all searching. I trust you will find something that will help you. Thankful for our friendship and how you are always there!
Charlotte you are a true friend. Thank you so much for always being there. Deb.
Hi Debra,What can I say ,you've said it all. I used to say there's always someone worse off than me,and there is,but I'm constantly in pain,and when I can't cope and crying,no ones as bad as me. So I think a little TLC is welcome. I've found through the course of my journey,if I've been on any drugs and decide to withdraw because I don't feel there doing the job,the pain does come back with a vengeance,so I'm thinking if the blocks don't help for long enough,you may be better not having them. Then I know this is not easy,but try some other way.
Boy I do wish they would come up with something. I've already lost 13yrs,and your not alone in thinking you wish you didn't wake up,I think most of us have been there. Just leave you Deb,with all the love Empathy hugs and prayers I can think of for everyone.💕😘🙏🏼🙏🏼💐
I had surgery for entrapment n 2014 in Phoenix. It gave me 60% relief. It made all the difference in the pain I could tolerate. I was where you were for 6 years. Only the my that helped after that was PT with a urogenital therapist and my CBD vaginal or rectal suppositories. Depends where or what area I am in pain. I use a suppository every night without fail. I have actually reduced my level of pain to a 2 or less. I do not use any opioids. I take no meds. I keep my bowel clear diligently because that can cause pressure on a ligament that affects the nerve close by. The pudendal nerve has somatic and autonomic reactions. Research and stay calm. It is up to us to manage this condition. I do not believe there is much out there to help. My PT really gave me great tips to manage this horrid condition. Take care
Susie, you are the same as me....I had the surgery in St. Paul, Minnesota in 2011. I would say it healed me 70%. It wouldn’t have been 95% if it had been done in a timely fashion. ( I waited 3.5 years because I had no medical support ). Every doctor I saw misrepresented the truth. They simply WOULD NOT believe me. They all said I had a personality disorder! NOT!
I would have healed better had they removed the metal titanium Filshie clip used in my tubal ligation ( birth control pill disagrees with me ) as it had migrated and was sitting on my rectum! It was being pinched whenever I sat or lay down! I believe that clip caused my P.N.E.
Prior to the surgery, I had been left sedated 24/7 from April 2008- February 2016. I was taking 6 Tylenol #3/day, 75 mg/ day Nortriptyline and one 7.5mg Zopiclone at night. I was fortunate that a friend who is a doctor suggested I try the vaginal Valium/ Lidocaine suppositories for sleep. I know they saved my life.
All these medications did was make me tired, stay in bed, lose cognitive function and they did not really help with the pain. I almost died from severe sleep deprivation. It was brutal. I was woken every night with nocturia that was pain free. I would go back and lie down and my right buttock was on fire! It was so brutal it felt like someone was branding my rectum with a red hot poker. It was TORTURE!
Which section of your pudendal nerve was injured? I am glad you found some help and relief.
I have pain from mid thigh to mid abdomen and all of my perineum. Bladder and bowel are dysfunctional. I manage pain with suppositories of CBD. My bowel care is very key to controlling pain. I use THC for sleep at night, but very low dose indica. I take no prescription meds. All the prescription meds cause constipation and I cannot function mentally with them.
I have weaned off of the Tylenol #3, and a fentanyl duragesic due to being legally prescribed medical marijuana. I use THC oil for sleep as well but I still require the Zopiclone. I hope to one day no longer depend on it for sleep.
I use a mix of 10mg/ml CBC oil / 10mg/ml THC for managing pain each hour and I do use a little of the THC oil alone for breakthrough pain if I am in a flare. I will NOT drive if I feel at all too tired or light headed.
I have used a great probiotic daily for years. No bowel problems except leaks due to my nerve damage. I do drink a lot of Kefir. Do you?
Has a capsicum balm or cream around your belly and on your perineum never helped you?
I have not used capsicum, but I soak in a magnesium bath. Also use a dilator when I feel my pelvic floor is hypertonic and it difuses the pain. I was shown how to use it by my PT. It seems that some days all I do is manage this condition, but I have good days. I have battled this for 10 years. I am 70 years old.
Soaking in a magnesium crystals bath is amazing. Epsom salts baths are great to. Are you aware that there is a magnesium oil spray one can buy? Sometimes, my knees are so sore that by spraying that magnesium oil on, the pain abates for a few hours. It may help you.
I am ten years with this and I manage my condition 24/7 to. I am 61.
Special seating, medications/supplements in pill pockets taken three times a day, capsicum pain patches, magnesium oil spray, elbow brace, knee brace, legal medical marijuana oils, ergonomic tools for gardening and housework, aisle seats on planes whenever possible ( for easy access to washroom ), wheelchair access upon arrival ( if I know the walk to the next gate is a long one ) and I prefer being a passenger in a car now to being the driver. I love driving. Road trips were always my favourite.
Moving my right leg back and forth from the accelerator to the brakes and back while driving upsets my ischial spine and the my right inferior rectal nerve and the rectal branch of my right pudendal nerve. Sitting is not comfortable. I prefer sitting with my legs up.
I am still hoisting my body up over speed bumps on roads by using my right arm and lifting my body up off the car seat with my car’s knee brace.(/bracing with my left leg ). That way, my butt is up and off the seat over the bumps.
Slowly....I pray for healing. I pray all of us can find doctors that are educated, open minded and are willing to advocate for our return to health. I had little support and it was the fight of my life to get the surgery I knew would save my life. The doctors would NOT support it.
I do kegel exercises every day. I also meditate regularly and do Reiki. Did you find that once you could breathe normally again ( when you were no longer in a flight and fright survival mode...was it like that for you? ) any exercise to do with breathing and meditation was possible? Continued laboured breathing over several years is not healthy.
Before my surgery I was a complete basket case and I developed an organic brain disease. Thank goodness our brain is neuro-plastic. I am almost 100% better cognitively. Best wishes to you as well.
You said it exactly how it is. I hope our conversation can help others. We manage this condition and keep learning and praying for healing and new knowledge.
I can sit longer without flare ups and traveling is not so daunting. I love to camp and I bought a trailer. It is physical to drive and set up, but I do recover and I get so much from the experience mentally and not giving up. This nerve problem has a brain and it is all connected to stress, not just physical stress.
Our brain is constantly communicating with the spine and peripheral nerves. I do want to believe that continued meditation and living mindfully will eventually calm my brain and then the rest of my nervous system.
Stress IS the cause of many illnesses. We live and work in such a busy world. We were often short staffed at my work and I know I simply worked too hard because I cared.
I had a job involving patient health care and it made me happy! I was there for thirty years preparing and cross matching blood, plasma, platelets, IVIG, and other blood components for bleeding patients.
I did not have a sitting job. We were busy. It was an acute care hospital. Seven phones rang non stop in our department between 7 a.m. and 11:00p.m. We lifted heavy boxes of inventory up off the lab floor and onto trolleys to unpack them. We bend over our groin constantly each shift to place products onto or take products out of refrigerators/ freezers/ platelet shakers that have shelves that are below waist level.
If a woman has had pelvic surgeries and she does a lot of hip flexion and stooping positions at work......it WILL PUT A STRAIN ON THE ISCHIAL SPINE. No wonder my sacrosphinous ligament was over stretched! I did this work style for 30 years. I also raked 45-50bags of leaves every fall.
I am pushing myself more and more physically with more regular walks and gardening BUT I still have the nerve acting up and I cannot sleep without the Valium/ Lidocaine vaginal suppositories and THC oil. I keep pushing though. I was always active and it is healthy to move! Best wishes.
Did your Dr prescribed the suppositories or do you go to a pain clinic? I would like to try them. Do you get brain fog from them?
I am a retired nurse,but for the last ten years I worked and it was painful. I am single and had no choice. Kinda glad because I think I might have given up.
I had forgotten. My G.P. WAS NOT supportive of me when I presented to her with Pudendal Nerve Entrapment. She did not believe I was hurt. I think she thought I was seeking attention? Bizarre?
My C-reactive protein was markedly high and she said it was the highest level she’d ever seen in any patient. Instead of using that as a marker that something was wrong.....she turned it on me am yelled at the top of her lungs, ‘ DO YOU SMOKE’!! right into my face.
I told he the truth. ‘No, they are cancer sticks. They are also a waste of money’. She didn’t believe me.
She accused me of being of being a smoker and from then on in would not help me. Every specialist she sent me to brushed me off. It was an excuse to cover up a post surgical injury.
A friend in another part of the crounty who is a doctor suggested I try the Valium/Lidocaine suppositories. She sent me a paper and I showed it to my doctor. I had to begged her for them and she wrote the prescription. I have used them for nine years.
Yes, I wake up with the pain every morning and I do feel tired. One coffee and the brain fog is gone. Do you still drink coffee?
I agree with you. We have to be our own advocates when it comes to this illness. As for the surgery. I’m too afraid to get it done at this time for I feel the damage may have progressed to far on me. I’ve had damage now for 17 years to the perineal branch of the Pudendal nerve. I have heard more horror stories than success stories with the surgery and most surgeons do not take insurance. At this time I’m not in a financial situation where I could even look into surgery. Part of me wishes I could but I’m so afraid that I would get worse after it. Not that I’m saying it doesn’t work for others. But thank you for your support. And lots of hope and blessings sent your way. Deb. ☺️
Im so sorry to hear of your suffering still Debra, my heart goes out to you sweetie. You have been fighting for so long, i pray for you that relief comes your way. I wish i could offer you some knowledgeable advice but im still searching myself, still yet to get a diagnosis but i can offer you support and comfort that you’re not dealing with this alone. Reach out as much as you need to, you are there for so many of us, such a support to others, even though you are struggling yourself. I really understand the torment you are going through but you are a true fighter and i really believe you will get the relief you need because of the strong spirit in you x
I feel the same way..........it stinks and is almost unbearable....... I just tell myself, you were without pain all your life, there MUST be a reason for it........next we're checking my brain and testing me for MS. It's the worst thing I had never heard about......... I had no idea that vulvodynia, whatever you want to call it even existed....that was over 4 years ago and nothing has worked yet..........he is now looking at my lower back and perhaps a pinched nerve......who knows.................but we will find out.....Good luck, don't give up.....do what you can, be good to yourself!! that makes a huge difference..........best of everything to you....
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MY SECRET PAIN! LOOKING FOR PT
Interstitial cystitis 
The constant pain is making me so low
Update on my pelvic pain
