Fellow suffers. Here is my history. Everything that has happened with treatment.

[Debra13]

Dear my fellow suffering,

I thought it be best to write a little narrative of how and when my symptoms first began. For years I suffered from yeast infections. In the year 2000-2001 I fell from a very high surface onto my coccyx bone, that same week I also got a very bad urinary track infection and was put on cipro and I also used tampons for the first time. To my surprise the infection went away but the severe pain we all feel in the vagina and the rectum did not. I was misdiagnosed at the time or so I thought with vulvodynia. I have now learned that Pudendal neuralgia is a form of vulvodynia because that is just a wide range word for pain in the vulva. I was working at the time as a physical therapist and was shocked when I was put out on disability for the first time. I went to many doctors and often heard the dreadful statement that it was all in my head. I finally found a doctor who I now learned is a bit of a quack when I went to this doctor not too long ago for help and she was telling me that I only needed Vitamin B12 for my vagina to heal. Yes, vitamin B12 is needed but not that alone. Charging 500 a treatment I never returned. Back to the early days. When I did go to her she said my body had the very bad yeast inside of it and boric acid and a vitamin D protocol would help it. To my surprise. It started to work. I returned to work with my pain at a level of 2-6/10. 6 being very bad days. I wasn’t on anything else. I was able to function to a point. Sex was still horrible but I was able to do it, with showers right after, ice and a boric acid. My walking pattern wasn’t the greatest. I walked very slowly, I couldn’t sit for longer than 45 minutes but that’s a very long time considering now and I couldn’t work out because heat made me worse. I still felt burning 24 hours a day 7 days a week but no way near what it is now. I would give anything to go back to those days. It was the summer of 2010 I went to see Dr. William ledger. He is retired now. He told me I was the worst case of vulvodynia he ever saw in his life and there was no cure for me. I went to him because I was contemplating a surgery with my gynecologist called the lava procedure. He also told me DONT EVER LET ANYONE CUT ME. I should have listened to him. My pain would get very bad when the season would change. 4 times a year my pain would go through the roof but I would deal with it and use my boric acid. Yes,I know rat poison. But it helped. It was the spring of 2014 and I went away and got engaged. It was that year that my life would change forever and not for the best. My fiancé and I didn’t have a nice time because I was in an exacerbation. So, we decided enough was enough. We found a doctor named Dr. Goldstein. We went to him in June. We were very impressed with him and didn’t head the warnings that others wrote about him. He told me I needed to have a vulva vestibulectomy. And this would in fact cure me. It was the first time we ever heard those words that I would be cured. Well we decided to go through with the surgery. Little tip if you are going to get a surgery make sure you read the risks and not have the doctor tell you it’s not necessary to read it. Just sign the paper. Also I was confused because he never could answer me as to why my rectum hurt so bad. He actually called me on vacation so I really thought he cared. By the way he didn’t take insurance and everything was paid out of pocket. While on the table I remembered Dr. ledger saying “don’t let anyone cut you” I was about to say stop but the drugs took effect and I couldn’t get the words out. I woke up with no pain and thought maybe this did work. I was excited. But no. After 2 more surgeries that I will not get into just know they were torture and performed locally in his office. I am now completely disabled and also found out what an unnecessary surgery this in fact was. I was diagnosed correctly finally with Pudendal neuralgia after an MRN and a diagnostic nerve block. So, Dr. Goldstein made me far worse because he cut the peripheral nerves in the vestibule by removing my vestibule. So, not only is my pain 10x as worse before the surgery but I can’t walk now it goes down both my legs and of course we all know all the other beautiful symptoms of Pudendal neuralgia, coccyxdynia and interstitial cystitis. So below is everything I have tried and I’m doing now. I hope this helps someone else:

Vulvodynia 2000-2013 vitamin D and boric acid suppository worked. 👍

Vulva vestibulectomy and revision performed, bartholin cyst removed 2014-2015 made me worse 👎

Botox 8 injections, cortisone injection by same surgeon who did vestibulectomy. Didn’t work. 👎

Pain medication tramadol👍

Motrin 👍gave me an ulcer though. Gastric ulcer

2016 Pudendal nerve block pain management doctor 👍worked 2-3 days.

Pain medication oxycodone and tramadol 👍takes the edge off.

Pain medication fentanyl patches👍helps a lot.

32 nerve blocks. Including Pudendal and ganglion impar blocks works 👍while it last.

Partial hysterectomy 👍 helped relieve pressure from increased uterus size and fibroids

Pulsed radial frequency to Pudendal nerve.👍👎worked on my right side made me worse on left.

Electrical inserted stimulater to T8-T12. 👎worked for back pain made vulva and rectal pain worse.

Epidural shot to L4-L5 disk herniated. 👍 worked

December 2017 amniotic graph injection and Botox and removal of scar tissue in Tennessee. 👍👎 yes and no. I’ll have to explain that in a message ok.

Pills. I’m on topamax, ability, Librax, omeprazole, Zantac, tramadol, oxycodone, fentanyl patches, gabapentin, diazepam vaginal suppositories, hyluronic acid suppositories, hyaloronic acid external gel, I use coconut oil like it’s going out of style for the burning and my rectal fissure,vitamin D3, B12, garlic pills, turmeric, cranberry pills, acidophilus, Premarin, relastore, water pills, boric acid. Magnesium pills and cystoprotec.

Pelvic things I do: I stretch 3 times a day. 4-5 sits baths a day with coconut oil and epsom salt, ice and heat. Trigger point release. I use coconut oil and Cisco to help relieve burning especially after the bathroom. What ever I can do to get myself out of even if it’s a little pain.

Presently I go for 2 nerve blocks a month. Usually I get 3 injections 2 Pudendal and one ganglion impar block. I’m now getting ketamine in my IV’s also. I’m also considering a new treatment out there where instead of leads they use a pad over the sacrum for a stimulater. I may be going for a trial after my next nerve block on the 17 of April. I hope this helps someone. If you have any questions let me know. Thank you and God bless Deb. I hope someone follows my lead now.

[Debra13]

Also I go to physical therapy 2times a week. How can I forget her. Yes that’s 👍👍👍👍👍Deb.

[ez-goin]

Have you ever looked into pudendal nerve entrapment? (PNE) There is a real good Dr. (obgyn) in Phx. Ariz. Dr.Hibner is a specialist in pelvic disorders and probably one of the best.

[Debra13 in reply to ez-goin]

Yes, I actually did call his office once. I’ll be honest with you the surgery terrifies me. Everyone I know that has gotten it done gets worse after it. I’m so afraid to get it done and financially I can’t afford it right now. My doctors have also told me not to be cut anymore. Go figure. Thank you Deb. God bless.

[STUBBORNGIRL7368]

Hi Deb, i think u r familiar with my case but i will do the best i can to remember it all. In 2014 i got the worst uti of my life. 6 months later and 9 antibiotics, still not cleared. During this time i got a shocking/electrocution type pain down my spine and to my vagina and rectum. I kept going back to my doctor and he insisted my problem was from my back, as back pain was part of my symptoms and i am an amputee since 2010. He figured it was from gait abnormallity that my back hurt and he ignored the other pains. I went to pt which i failed and then he did mri of my back. It showed, stenosis, arthiritis, pars defect, bulging disk. I was sent to a back surgeon, mind u my pain was now 10/10. I begged this surgeon to help me. They said none of the back problems matched up w the level of pain i.was exhibiting. My gp gave me one hyrdocodeine 7.5 per day, which at this point was doing nothing. I was sent to an interventional pain management doc whom did 9 different sets of injections in my back and an nerve ablation. Strange thing was the injections helped for an hr or two and then stopped working. All along i kept asking him why my vaginal and rectal pain was so bad. He would just tell me he had no.idea. The nerve ablation did nothing. I finally quit going to him as financially it was draining me. My doc finally put me on a fentanyl patch and for one in 2 yrs i was finally not suicidal from the pain. I was sent back to physical therapy and strated going to urologist. I was diagnosed w interstitial cystitis. I had many med trials for i.c. and none helped. The urologist wanted to do an interstim and i refused. My p.t. gal happened to be a womans health p.t. and she told me that she believed i had back problems secondary to pudendal and i.c. problems. She gave me the name of a pelvic pain specialist. He diagnosed me with i.c. again but confirmed the pudendal neuralgia. He did several med trials and one helped vaginal valium daily. He started doing bladder installations 3x week and after 2 months that was a failure. He did a cystcopy w hydrodistention. No help there. I was doing home bladder installations of lidocaine which helped but not enough. I could no longer urinate on my own and was self cathing about 4 times daily. The pelvic pain specialist felt he had exhausted all efforts and sent me on to a new urologist. My first visit he did a bladder installation and for 20 mins i was pain free. He decided to do another cystcopy w hydrodistention this time he was injecting chlorapactin. I was scared to death as chlorpactin is a industrial solvent. Guess what? I woke up with 75 percent pain reduction and i no longer had to self cath. Problem was it wore off in 1.5 months and he will only do these every six months. He now sent me to the nurse practitioner in his office whom is an i.c. specialist. I told her that i believed my condition to be related to infection. She did urinalsis and i was infected. She did many kidney tests, as well. My bladder infection cleared but i still hurt like hell. I asked for a more in depth urinalsis and she agreed. They tested for 18 things and i came back positive for three bacterias and yeast. I have been on five antibiotics which work the first day and then boom, im back to horrific pain. I am now on cipro, levaquin and diflucan at the same time. This is the best my pain has been. I believe i am having a mass die off of bacteria, as i am having lots of gastro issues. I have talked this doc into the microgen pcr testing, which will test for 25k different fungas and bacteria. I have that on wednesday. I hope and pray this helps u. I know i have left a lot out. God Bless u all and especially u, DEB as u suffer so much and r so vigiliant in finding help not only for yourself but for others.

[Debra13 in reply to STUBBORNGIRL7368]

Wow. It’s possible that this could be me. Misti. I had the infection and suffered for many many years with yeast infections and in the beginning when I was first diagnosed I failed to mention to everyone that doctor put me on tecquin. An antibiotic and the vitamin D and boric acid. To be honest with you I feel my best after I use my boric acid. I use it 2-3 times a week and yes my fentanyl patch works but I’m on a high dose already 75 micrograms and my specialist in Philadelphia who finally got back to me wants pain management to raise the patch dose. I don’t want to because I don’t believe it goes much higher than 100 micrograms and that’s where I would be at. I think I need to tell my urogynecologist who I see May 16 about infection. I believe now that everything may be stemming from infection as well. I need to call you. I’m going to. text me when you are up for a phone call. Right now I’m back in my primary care physician office my sinus infection has gotten worse and I’m supposed to get 3 blocks tomorrow and they won’t do it if I’m sick. Now I’m so stressed over this. I was really looking forward to this block with the 3 injections and the ketamine. Oh well. Text me ok. Hugs and God bless. Deb.

[ez-goin]

Wow sounds like you have been through it. I won't bore you with all the suff--operations--etc. I've had but at one time I was on a 100mcg patch on one arm and a 50mcg. on the other. Just saying you can get on more if they work for you. In Ohio you can't get them. Opiate war and all that!

[Debra13 in reply to ez-goin]

That’s the same I believe in New York. Thanks though. Deb 👍

[Susan1-2]

Hi Deb, please try mindfullness. I know it sounds crazy after everything you have been through but when your body goes into deep relaxation you can calm the nervous system. Palousemindfulness.com . 8 week free course online. I meditate at least 4 times a day. My pain is minimal. If it increases I meditate and my nervous system calms down again. The first few days of practice were horrible then it got better.

[Debra13 in reply to Susan1-2]

Thank you. I will try anything at this point. Deb 🤗

[whiterabbit71]

Thank you so much for sharing these details. I’m just now learning what is wrong with me and trying to accept it, find ways to manage the pain and return to somewhat normal life if possible. It very helpful to know that I’m not alone and to get ideas on what has and has not worked for others.

[Debra13 in reply to whiterabbit71]

Know this. YOU ARE NOT ALONE ❤️ God bless you. Debbie

[Susan1-2]

Hi Gals, have you tried D-Mannose. I decided to take this instead of Cipro. I was losing bladder control back in December. I asked for an MRI for Cauda Equina. They said I didn’t have it but it was possibly a urinary tract infection.

When my problems first started I too thought I had a bacterial infection after rectal surgery. But, no one believes it. I even was sent to infectious control And they said this was normal bacteria in your body. I don’t believe it. So, I have three scenarios in my head after 3 1/2 years of this war:

1. Initially I thought it was bacteria 2. My herniated disc or bulging disc caused everything 3. Anal fistula surgery set everything off.

What has worked: moving a few perineal branches of the pudendal nerve allowed me to sit again ( This surgery was very difficult).

Physiotherapy did not work for rectal pain but gave me an understanding of my muscles. Saw three physiotherapists. 1st physiotherapist helped me regain bladder control using biofeedback. The biofeedback did not work for rectal problems. Loss of anal tone and atrophy.

I tried the wand as I have two trigger points in the anal wall. If I push on this area internally it stimulates a bowel movement but is incomplete. If I push underneath the external anal sphincter(externally) on the the inner anal sphincter towards the back while sitting down I can have a complete bowel movement most of the time. But then the nerves are set off and I will get this uncomfortable feeling up my back and nauseated. Usually, the first thing in the morning I can have a bowel movement without doing this.

Chiropractor care did not work. I would feel good for a few hours and go back into same pain later. Lots of money spent with three different chiropractors on three different sessions months at a time.

I have seen numerous acupuncturists. The latest one gave me herbs to help with the bowel. It is dried ground dates. After three weeks still has not solved the problem . I go for acupuncture 2x a week for relief of muscle spasms.

I had Platelet Rich Plasma and not sure if it helped.

I have tried all the medications. I don’t think they will solve the problem so I only took them out of desperation. I had numerous nerve blocks. I got short term relief. But at least I know the pudendal nerves were identified as culprits in the discomfort.

I bought all the videos : Amy Stein and others, read the books by Anderson and others. Yup, spent a small fortune.

What works now : meditation to relax the nervous system, a new physical therapist who doesn’t tug on my leg but rather moves my legs side to side like nerve flossing. She got the nerve problem out of my legs. Strengthening the back slowly. It’s been a few months with three exercises and now moving on to 2 more that are helping. A couple therapist told me to have a flat back on floor while strengthening muscles. This hurt more than helped. I tighten my core and go to a bridge but not with a flat back . The bridge, laying down Piriformis stretch, and clam shells. Now worked in 2 more.

Laying down on back leg raise while opposite leg knee up foot flat while tightening 10 sec and switch leg 3 sets of ten. Then laying down opposite arm and leg stretch. Arm raised next to head parallel to leg extending on opposite sides. Walking 2-3 miles a day. Swimming laps. I can finally kick without pain. Last week started a vegan diet to get rid of any bacteria and inflammation. I also saw a surgeon and decided to have a colostomy because I don’t want to live with the pressure and pain in the rectum anymore. This took 3 1/2 years of my life. It’s too long. Thanks for sharing all your information. Hopefully, we can help each other.

God bless all if you☺️

[JJKNP]

You have been though hell. Do some research on Dorsal Root Ganglion (DRG) stimulators. It’s new technology that is similar to spinal cord stimulation but can more effectively target specific areas. I’m an NP in a pain clinic and we have been using this technology for about a year. It might be worth considering a trial.

[Debra13 in reply to JJKNP]

Thank yes I actually had one implanted but they implanted the wrong area. So I’m considering a different one. Have you ever heard of a stimulater for the sacral nerves. Not including the lumbar spine. It’s a pad also not leads. Not many doctors do it. My pain management doctor wants me to go for a trial but not now. Thinks my body has been through too much right now and wants it to heal for a while first. So, I’m considering it with in the year. I’m truly a mess. Thanks for your reply. Deb

[mjjohnson]

Where did you go in tennessee

[Susan1-2]

Hi Debra, I don’t know where you live but if you could find a Chinese acupuncturist(I used Dr Zhang at Boston Acupuncture) he could break up your muscle spasms so you could do physical therapy for your disc issues. It took 8 treatments for me to feel better. He also gave me ground date powder to help my digestion. I went to physical therapy at the same time I was doing acupuncture. He started with my stomach first, then moved on to my right area around sacrum and then down my glute area. When those areas were released I was on my back and he put needles on each sides of my hips and stomach and down my legs. Now I can run. I had radiculopathy start around August and I had two nerve blocks, 3 months of chiropractic treatment, then went on medication muscle relaxers and nerve medicine which did not help. Paloussemindfullness helped calmed down my nervous system and on utube a meditation called “ heal while you sleep”. Then I started physical therapy for my herniated L5/S1 but still had a hard time. So, I would drive an hour to the acupuncturist 2x a week and do the physical therapy 2x a week with exercise the therapist gave me to do at home. It took 4 months of physical therapy.

The pain is out of my legs and I barely feel it in my back. Overall, it took a year to get through it.

If I didn’t have the Pudendal Nerve issue I probably could’ve got through it in weeks. But, you don’t want to squeeze the Pudendal Nerves. So, I had to tell the therapist what I could do for exercises. It took 4 months to be able to do leg lifts.

[Debra13 in reply to Susan1-2]

Susan,

Can i private message you. I have a question for you. I live in New York. It’s s bit far from Boston Thank you and God bless you. Deb

[Debra13 in reply to Susan1-2]

Susan,

Can i private message you. I have a question for you. I live in New York. It’s s bit far from Boston Thank you and God bless you. Deb

[Susan1-2]

Yes

[Hidden in reply to Susan1-2]

Dear Susan, May I private message you? I live in Boston.

[Susan1-2]

Well looks like I am not getting out of this. I can not get rid of my muscle spasms. The acupuncture was working but I was having trouble with my bowels. It’s difficult to have treatment when you constantly have to go to the bathroom. It’s discouraging. I don’t have the burning pain but I am back on Gabapentin and Baclofen which stops the spasm of my anal sphincter. Then, I don’t have the tight sciatic nerve down my leg. My neurologist was right. He thought I should increase my dose of gabapentin and baclofen. I was reluctant to do this and I weaned myself off medication and started physical therapy and acupuncture. Now , I and back on medication and I feel like I am falling asleep all day. I have been waiting for a colostomy but now not sure if that is the answer. I want my life back. I will continue to walk 3-5 miles a day and hope that don’t fall asleep while walking. Ugh!!

[Debra13 in reply to Susan1-2]

So sorry Susan. If you need to talk private message me ok. Deb

[Susan1-2]

Hi, I messaged you privately Deb. Maybe I am doing it wring

[Debra13 in reply to Susan1-2]

Susan I didn’t get it unless you used a different name maybe I don’t know. Deb

[Debra13]

I didn’t get it Susan unless you used a different name. Deb

[Susan1-2]

Hi Debra, it’s been a while. 3 months ago I was diagnosed with a ligament sprain, no glute strength in my right glute and Joint hypermobility by a physiatrist. This was the first solid diagnosis! She told me to start Pilates.

I am getting better. I started Reformer Pilates a month ago and I am building strength. 3 months ago I couldn’t walk without constantly stopping and doing a Piriformis stretch. I had horrific pain in my right SI Joint. I bought a 4 inch memory foam topper for my mattress which takes the pressure off my joints. Sometimes, I stop and feel overwhelmed. I can’t understand why it took four years to be diagnosed. I begged so many doctors for help. I just shake my head. I am going to write a book about it all.

[Debra13 in reply to Susan1-2]

I hear you. I was gonna do the same. I have 6 chapters done but stopped. I don’t know why I stopped. I guess I thought not many people would want to read it. Would you. Would anyone. Please let me know. Thank you. I wasn’t diagnosed with the correct diagnosis until 3 years ago. It took almost 14 years to get it correct. Horrible. I do a piriformis stretch constantly. My sits bone and hip bones scream at me all the time. Omg the pain is sometimes just as bad as the burning and can be worse. Thank you for replying. Deb👍😊😃

[Hidden]

I am so sorry to hear you have had so many problems

Dr Goldstein believes removing the bartholin glands cured vulvodynia but I actually have vulvodynia as a result of repeated bartholin infections and useless lancings. Bad doctors have ruined my health ! I distrust all doctors now and do my own research.

Have you tried binaural beats for pain ? There are a few videos on youtube. Also, has anyone tried amitriptyline and gabapentin cream as you are in the US ?

I go to TMSwiki very often now, a lot of memebers have had pelvic pain there and I think some of their stories are very encouraging. Even if you do not have TMS (mind-body syndrome), their approach is risk-free (you don't have to give up medication to make it work). There is a user there, ozagnes who got better despite pudendal neuralgia and vulvodynia.