Health Organization for Pudendal Education

I'm so sorry you are still suffering. I know what it's like to be in so much pain you think you might go crazy. In sheer exhaustion last month, I ended up in urgent care because I just couldn't take it any longer. These last few months have been quite a journey for me-made much tougher when you have to get creative with medication. I hate to even give any other suggestions, but there have been two other things that have been helpful to me.

My dr gave me something called Doxepin to help with sleeping. I have the oral solution and only put three small drops into water before bed. I didn't think such a small amount would help, but it really does. I'm able to wake up without any side effects. It doesn't help with pain, but at least I can finally get some rest. Again, I can only speak for myself, but nothing bad has happened to me while taking it and I am usually the queen of side effects! I believe Doxepin is a tricyclic anti depressant. I know that might not be the route you want to go down, but by getting something in liquid at least you can start very small and control the amount of medication used.

I spoke with a very experienced pelvic pain pt who told me to try something called a K-laser for hip, thigh and piriformis muscles. I have done ultrasound and other cold laser therapy, but she said the K Laser was different. I ended up having a treatment yesterday and while I am still very sore, I think it has done some help. It's been the first time in six weeks I was able to sleep without ice packs behind my thighs. The treatment itself was only about 20 minutes. It's non invasive and didn't have any side effects.

I know everyone's situation is very different and these things may not work, but I wanted to pass them on just in case. I hope something will give you relief very soon.

I have been on Doxepin whenever I have had PN pain. For me, it is the tricyclic antidepressant with the least amount of side effects and it definitely helps with sleep. I take a 25 mg. capsule at night. Wishing you less pain,

Stephanies

Saffron!
Thank you for the tips. Anything at all is helpful. You sound just like me as far as the meds go. I am familiar with Doxepin but didn't know it came in liquid form. That is a great idea. I am going to ask my dr about it.
I never knew that trycyclics came in liquid form.
Also with the k- laser, is that something my pelvic floor pt would have or can you get one for home use? Is this for tightness is the hamstring, glute and anterior hip area?
So far I have had a couple of pt sessions with internal & external myofascial release. Some on the thigh, (inner) some on the piriformis, some on the lumbar spine. Then finished with some tens for five minutes or so. Also I asked for a few simple stretches that won't worsen the nerve.
Did you say where your nerve pain was that was PN related and/or is yours more musculoskeletal trapping it?
I too, can't sleep well and any ideas are greatly appreciated. I have opened liquid Advil capsules and gently rubbed those on areas that were out of control. It it a little harsh on the skin and I do have to eat before I use it like that but at least it is t burning a hole on my stomach.
I also take clonopin for sleep (even before this) and that helps for a few hours.
And another med I can tolerate at a small dose for a good night's sleep in hydroxyzine (Vistaril) which is an antihistamine given to me for IC and sometimes used for nausea during a migraine. I can only take it one night and have to skip a few or it builds up too quickly.
My neurologist told me that I have some sort of genetic thing that a small percentage of the population has that their liver doesn't metabolize certain medications very well. He was creative with meds and he did tell me to alternate meds each different night so it wouldn't build up and cause side effects.
I wish I could explain the shooting/stinging pain and when it takes place so that I could narrow down a cause and heal this thing.
Have you had any answers Saffron? I would like to hear what you have been told. Thanks to you also Stephanies. DG

Hi Violet,
I just saw your post about the Lyrica. I have a two week trial pack here so I was going to give it a shot this weekend. I do need to take the Clonopin with it because for some reason those meds make me tired and awake at the same time. It's kind of paradoxical and doesn't make much sense. That is why I keep stopping the GABA.
One of my friends is a pharma rep who told me lyrica was a "dirty" drug and that a lot of people have to be prescribed Zofran to counteract the nausea that can be a side effect also.
I will give it a try. I want the nerve pain to stop. I am desperate. Thanks again.

It may sound funny, but even in my thirties, I take my medication like I would be a toddler! I have most everything made into liquid form and even have my gabapentin in strawberry flavor. It still tastes pretty bad, but if I chase it with a bite of a cookie or potato chip, I'm good to go. Because meds are often really harsh for me, I like to start anything very slowly and work my way up to the regular dose. Also, this comes in handy if I ever need to taper down as capsules and tablets can be hard to break. I had never heard of rubbing advil directly on skin. I may have to try that. I have gabapentin also in a cream form that I sometimes use as well. A therapist told me to take a mini dixie cup and freeze it with a popsicle stick. They can then be popped out and rubbed everywhere you are burning or sore. I'm going to try that one as well this weekend. I've also read doing a castor oil pack may relieve some inflammation. If you google Jini Patel Thompson you can look at her natural healing site. She recommends using this pack for pn/pne. From the big guns to holistic, I'll try anything!

The K-Laser is something you would find either at a physical therapist office or chiropractor. I have only had two treatments, but I find it very relaxing. The laser itself looks like a microphone and when it touches the skin it feels warm, but not hot. Even if you can't find that particular laser, I would think any laser would help with inflammation. If your pt doesn't use this modality, I would think you can still find it at a chiropractor's office. I think it's worth a try as the laser can penetrate much deeper than any topical cream.

I'm still pretty confused about what I have. One doctor says it is pudendal nerve, the other isn't sure. I had a pelvic mrn done a few weeks ago which didn't show very much. The radiologist said he could see both nerves and they looked symmetrical, but after reading these boards, I'm not sure that can rule anything out. I didn't need contrast with this mrn, so it still might be a possibility for you. I know my symptoms came right after pt, I just can't figure out what she did! An ultrasound revealed hamstring tendinopathy and bilateral hip inflammation. I have burning and soreness in my sit bone area. Prior to pt, I never had any of these problems. Gosh, she really did a number on me after only two sessions. I wish I could warn other people to stay away from her. She's listed as a pn/pne expert on many pelvic pain sites which I think is harmful. Please try to give the laser therapy a try. It should be covered by insurance. If I can think of anything else, I'll let you know! I hope you can relax, even for a little bit, this weekend.

You have the most creative ways of taking meds. I didn't know that gabapentin came in a cream. Does a regular pharmacy have these meds like this or are you going to a compounding pharmacy?
After reading about your symptoms again, it doesn't seem like true pudendal nerve to me. Your sit bones are burning and sore and your hips have inflammation. Also the hamstring tendinopathy. I wonder if the pudendal nerve is irritated from those areas maybe tightening up the obturator internus.
Just a thought, because I have similar symptoms and my pelvic floor pt said she thought some of it was pn but a lot of it was coming from my lower back, SI joint, priformis and hips. She is doing various internal and external modalities.
Yours came on as the result of the pt so it makes me think it will go away in time and that you don't have a true entrapment. It stinks to have it come on after you try to help yourself through a treatment but I do think yours is temporary and it's going to heal on its own time frame. My pt said she had never seen one true case of real entrapment so that was encouraging.
I am praying mine does the same but I don't have as much hope for myself because I have been so chronic for this whole year.
I will ask about the K Laser next week. It sounds good. Using tens at home for the past few days to try to redirect the pain pathways. She also said it would be ok to do gentle hamstring stretches. My hammy feels like it's been wound tighter than a guitar string. Oh and she said I had ischial bursitis on the sit bone (my good side). A Dixie cup ice pop would feel good on that! Thanks for the tips. I really appreciate your support. Dakota

I had failed surgery with Dr Filler. I had two surgeries, The first was pudendal nerve surgery. Dr Filler told me after this surgery that he had decompressed the entire nerve. He explained he had checked the nerve at the ligaments and told me I was not entrapped there. Dr Filler then told me that the periformis was the problem and I had periformis surgery on both sides. This surgery also failed . I was wrong to believe in Dr Filler’s published statistics.

After these two failed surgeries I had appointments with both Dr Dellon and Dr Greenslade. Both of these Doctors explained that it was absolutely impossible for Dr Filler to have to checked the nerve at the ligaments from the incision Dr Filler had made.

I would advise anyone to avoid Dr Filler.

Sorry your surgeries failed, Dave. Sadly, I have not heard of many successes from Dr. Filler surgery patients. What are your treatment plans now?

Violet

Thanks Violet. I have now made a full recovery from chronic pelvic pain with Restorative Exercise , a movement programme created by Biomechanist Katy Bowman. I have posted up details about my recovery in the success stories section.