This is a wildly unreasonable amount of pain. I would go to the hospital if I had any reason to expect to be taken seriously, but the one time - the one time in seven years of constant pain - that I went to the ER because of increased pain that I could not tolerate, the first thing the ER doctor said to me was "We can't give you anything intravenously." Being a chronic pain patient in the ER for pain is not a positive experience.

I don't actually know what it feels like to be simultaneously impaled rectally and vaginally, but that's the best description I can give. It woke me last night, and the pain was so intense I thought I would vomit. In the morning, it had calmed some but was still far above my average of 7 on all of our favorite pain scale. Since 9:00 this morning, it has fluctuated between that and "someone is shoving the spike farther up my rectum." It is truly not okay.

Why is it that I do not have something to take that simply knocks me out on the infrequent occasions this happens?

My state needs to allow medical marijuana. Or medical cartoon anvils to the head.


Esther said...

I'm sorry you feel this way, Kate. I know what it's like -- or my version of it, that Level 10. It is unbelievable. And it's unbelievable that we have to just sit there and deal with it. It's demeaning, both the pain and the fact that we can't get proper treatment. I hope you feel better soon.

DG said...

Kate---I'm glad to see a post from you again. I have been following your writings for a while. I, too, had tg decompression surgery from Dr. Antolak in Jan. of 2009. I don't think I had any noticeable improvement until 18 months after surgery. Then slight improvement for the next year and a half. So, 3 years post-surgery, maybe 30-40% improvement. Sounds like a lot but, my pain was off the charts before. Now, 4+ years I maybe am 50% and that is where I think the improvement will end up. I think I have willed myself to not dwell ont the pain: it is still there but not as intense, depending on activity. I am lucky in that I have been able to retire and can lay down and rest anytime that the pain intensifies. My wife, tho, has to do all the physical stuff around the house as I am not able to. I live in Mpls suburbs, I think you, too, live in Minn.Anyway, hang in there and I can talk to you privately if that is someting you want to do.....

dg said...

However, just to clarify, I still have pain spikes in the 8+ scale, but it is not as often as before. And, I do get relief by laying flaton my back on the couch which has become my bed for the last four years. You have talked about meds, I take cymbalta, neurontin, and nortriptyline forpain and remeron for sleep. Doesn't take the pain away but takes the edge off.........

jenji said...

I'm so sorry that you're suffering so much without any sign of relief. It really is a slow torture. Whenever I've gone to the ER (for unrelated issues) I brought a folder with my entire medical history and in that file is a pamphlet regarding pudendal neuralgia because they have no clue. Jeeze, my original gynecologist didn't even know what it was, which I feel is a crime. If you're dealing with the pelvic area, be aware of chronic pelvic pain issues. Is that so much to ask? He's been fired.

Anyway, It's been so long since you've posted that I kind of lost track of your particular story, so I went back and read some of your old posts. I understand that you had the surgery, as well as the nerve block. What part of the nerve did they target for the nerve block? During my worst, my backside feels just as you described it and frankly, there aren't enough adjectives to adequately get those who are not afflicted to understand that level of pain. I did get some serious relief from my nerve block/steroid injection, but my doctor hit the nail on the head in diagnosing the precise part of the nerve that was giving me trouble.

As for any bad days that I have now and again, I find that Percocet works quite well aside from the fact that I'm allergic to it. But hives are an easy price to pay for pain relief, I just take it with Benadryl.

I know you used to take Oxy. Don't you have access to any pain medications anymore? If not, now wonder you were in the ER. If I didn't have Percocet, I'd be right behind you on my bad days.

I hope you get some relief soon,


DL said...

Best advice I can give is to read up on myofascial release, and get yourself a couple of necessary tools: a massager with heat, and a trigger point release tool like the Body Back Buddy.

I had this issue come on suddenly, but I've had some familiarity with nerve entrapment and muscle spasms. So I started to treat it like I would any other spasm.

What I discovered was that the tissue in my perineum was so rigid in spasm that it had become almost as hard as bone. There was virtually no give or flexibility to it. This is an issue that's been building up over some time for me, where initially I had only isolated "attacks" several times over the course of the first year and a half after the initial appearance of symptoms. Then, with little warning, it became constant.

It has literally taken me tens of hours employing myofascial release techniques to resolve a fair portion of the pain, and loosen up the tissue. I'm still not done. But it feels MUCH better. I start with heat to make the tissue more facile, then use my Back Buddy tool to hook into the restrictions and provide a light stretch. Deep breathing is a must--the extra oxygen, and the natural relaxation help the tissue release faster.

It's probably going to feel uncomfortable, and the little shudders and pulses in the tissue as it begins to release may radiate throughout the entire affected area. This is normal. Just don't press to the point of pain (at least not serious pain). I did this once during my self-treatment, where I really dug into it, and I irritated the nerve to the point of experiencing several days of minor numbness (which fully resolved, luckily).

I can't be absolutely certain that the cause of your pain is the same as mine. But it's worth trying. Palpate the area with your fingers, searching for hard, rigid, knotted tissue. If it's anything like my experience, you should know pretty immediately that the tissue should NOT feel like that. For me the ENTIRE area was shockingly stiff and unyielding.

I don't find seeing a massage therapist works in these instances because you just don't get enough treatment time for your buck. Like I said, this can take tens of hours of sitting down in front of the TV, breathing deeply, and trying to open up this tissue. And again, you're not actually "massaging" the tissue; you're finding a spot to hook into the restriction and giving a pull to stretch it. You can end up holding on any one area for fifteen, twenty, thirty minutes! Be persistent. If you start to feel those little pulses and release spasms, you'll know it's working, even if the relief isn't immediate.

Other tips:

- Drink LOTS of water. The entrapped tissue can contain built up lactic acid and metabolic waste products. It's imperative you flush it out of your system.

- Check in with other areas that may tie in to the entrapped tissue. Namely, psoas muscle, the tissue on top of the pubic bone, piriformis, sciatic notch, and hamstrings. As you familiarize yourself with the techniques, you'll start to figure out which areas may need attention on your own.

- Again, be persistent! I despaired for a while after my usual massage therapist couldn't resolve the issue for any lasting period of time. I finally realized it was just too gunked up for him to handle in an hour, once a week. It's a condition that's built up over time (at least in my case), and I had to invest a lot of time resolving it. Over weeks and weeks. But it's been so worth it.

I hope that my advice can help. Best of luck to all you!


Fashionably Ill said...

I know what you're going through. I like the cartoon anvil idea. Nothing knocks me out. I have internal muscle spasms that cause stabbing pain inside with a burning that works it's way to consume everything. It's made me scream, cry, and vomit. It's horrible, but nothing knocks me out. I hope you're feeling better.

Anonymous said...

Hello, I live in MPLS also and saw Dr. A for over a year several years ago. It turned out that my pudendal neuralgia was secondary to another condition, Lichen Sclerosus. I'm now being treated for the LS, and I can tell you that as I've had more and more remissions, the nerve pain has subsided. There's lots more I could say, but in a nutshell, I believe PN is often secondary to something else, and Dr. A doesn't consider this enough. (I will say that his steroid injections helped me on one side, and damaged the other side). After my experience, I'm running into this more and more. Is there a chance you have something else going on that may be more readily treatable?

I think you are very brave to have continued your career and carried on the years you have suffered. The pain is unspeakably horrid. Please take care.

Anonymous said...

Dear Kate, I wrote you previsously on 2/1/2014. I really am wondering how you are doing. I have had all your pain, and am now symptom free (I do avoid triggers). Undertstanding completely that we may have entirely different problems, I'd still like to share with you what worked.

Also, I'd like to get feedback from you on an idea I have about offering services for those in chronic pain. If you are too ill to discuss or even think about this, no problem--I was for years.

Mostly I'd just like to know how you are doing. Feel free to email me if you are so inclined: bmurphy@824@msn.com

Thinking of you.

Anonymous said...

Sorry, mistake in email address in previous note. It should be: bmurphy824@msn.com

Emily said...

Kate, I am in your shoes and really alone. I would be so grateful if we could talk or email. Im eabbey@ramapo.edu or 203 824 4830.


Terri said...

New to this blog. First diagnosed with Levator Ani Syndrome two years ago. New pain management Dr. talked about pudendal nerve so I have been looking at that. Finding this blog very helpful. I can sit if my perineal area and coccyx hangs over the edge of a binder or book, but not always. When I am doing o.k. I take my binder on the bus or in the car and it helps. Wouldn't be able to travel without it. laying down can be very painful. Things getting worse lately. Bending over to do anything...Struggling with school. I am 54 and studying to be a Continuing Care Assistant. Have had to take some time away because of a flare-up. Can I really do this work??? Tried Lyrica. Worked like a dream for 5 days and then worse than ever. Using Percocet more often now. This is really a nightmare, but I have a supportive husband and older children. Bringing in an income is pretty important though, but I have to be realistic. Anybody else had to leave work because of this?

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Anonymous said...

I hope people who wanted a direct response from me will see I showed back up. When I was (infrequently) blogging, I had a scream-and-run-away technique. I needed to vent, but then it was too much to keep thinking about, and I did not even look at the blog for a long time. I see that now, it has been four years. Jesus.

I truly do appreciate that people have written and offered thoughts and suggestions. Short version: done all of it; yes, I am still on pain meds (Oxycontin, immediate-releas oxycodone, Cymbalta - mostly for depression, but if I miss a dose, the pain increases - and now cannabis; I have a useless neurostim implant; it has been over 11 years now, and I still have pain every moment of every day. I hope that is not the case for those of you who wrote about your own pain.

I am going to try to blog again. I will start by responding to things pepper have said and see how that goes. It seems like it should be easy, but I spend a lot of energy trying to distract from the pain; talking about it means I feel it more. I know you all get that.


Anonymous said...

I know you probably won't see this but have you tried cryoablation of the pudendal nerve? Some people are getting cured.

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Kate from the UK said...

I don't know if you will see this but I wanted to try. I first found your blog when I was also struggling with pudendal neuralgia, with both vaginal and rectal pain. Your blog struck a particular chord because my name is also Kate, and I am also a Therapist. I stopped looking at your blog because I found that the more time I was reading about pudendal neuralgia the more stressed I was getting. But I still thought of you, and wondered how you were doing. The pain you described was so similar to mine, being impaled rectally and vaginally. I have come back now to try and tell you that I am 90 % better, with occasional small flares. I had tried all sorts of medical treatments, but not surgery. The thing that has helped is something I was initially intensely sceptical and dismissive of. I thought it was woowoo, quite frankly. I consider myself a scientific practitioner , and initially thought there was no way this approach was relevant to me, but it was. It is the work of Dr John Sarno on TMS. I won't explain the approach here because there is so much information available on the Internet. Try the website "Thank you Dr Sarno" for a wealth of testimonies to it's effectiveness! Many doctors have taken on the approach since then such as Dr Howard Shubiner and Dr David Schecter. Although not a doctor, Lorraine Faehndrich specialises in this approach with female pelvic pain, as she has recovered from it herself. There is even an app now based on Dr Sarno's work, called Curable. I understand that you are already in analysis but Dr Sarno would say that only analysis with a TMS familiar analyst will be effective. The website www.tmswiki.org has very good information. It may sound crazy but please don't write it off as I did at first, I could have saved myself pain if I'd have given it a try sooner. It has helped immensely, and hundreds of people on "Thank you Dr Sarno" would agree! Sending you my very very best wishes and I hope you see this message and maybe find some help.

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JESSICA said...

I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

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kate said...

As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .