Doctors have given up on me after 3 years

[volans]

I'll give a quick rundown of my situation. 3-4 years ago I had an anal fissure which caused my pelvic muscles to spasm for months. Although my fissure healed, I was left with constant pain with the following symptoms in order of most severe to least:

-pain in the anus
-pain in the scrotum
-pain at the moment of ejaculation (when the muscles contract) followed by hours of heavy aches around the perineum and anus
-sharp pains when a stool begins entering the rectum, as if it's pushing up against a sensitive nerve
-loss of sensation in the penis, compromising my sex drive. It's not to the point of complete numbness, but it feels like touching my arm. I can feel that i'm touching it but there isn't many pleasure sensations being received. And I can still achieve erections so whatever nerve is responsible for that appears unaffected.
-some pain in the lower and mid back, especially after standing for 1 or 2 hours. The pain in the lower back is more prominent when bending forward.
-occasional soreness and shooting sensations down the sides of the legs.

I have seen two pelvic physiotherapists with no positive change, not even temporary. I've spent numerous visits to a urologist to rule out anything prostatitis-related. I had an MRN of my pelvis that showed nothing noteworthy. An xray of my back appears normal, with just some mild scoliosis in the upper spine. I was given a pudendal nerve block which did not help. I was then given an s3/s4 sacral nerve block which did not help. Then I had the same s3/s4 sacral nerve block again in the off-chance that they just didn't inject it properly the first time.

After that last block my doctors were up front with me and told me they can't do anything to fix my problem. While my pelvic pain doctor suspects the s3/s4 nerves are being irritated, he finds it odd that the nerve blocks didn't work. And even if he was sure which nerve is the culprit, he would not recommend his surgery (laparascopic nerve detrapment) because the risks are high.

So that's where I'm at. I have constant pain. I can't sit, stand, or lie down on my back for any significant amount of time. Meds like gabapentin/lyrica only make a modest improvement, and the dosage has to be so high that i'm basically a zombie. The only thing I can do is lie down on my side, with a pillow lodged in between my legs. These past 3 years have been the worst years of my life but I kept going in the hopes that some doctor or method would absolve this permanent pain. This is the first time I've come to the realization that this will be with me the rest of my life and I'm mortified. Help.

[Patty]

It breaks my heart to read this. I was the opposite. I gave up on the doctors. I just stopped going. All it did was upset me that they had no answers. A few thoughts. The thing that brought me some semblance of relief was tramadol privicaine and Bella Donna. It's a compounded medication I insert rectally. No one will pay for it but for awhile it's all I could use to get through my work day so I could pay my bills. They make all different kinds of suppositories. You can look on this site.
Please hang on. I'm 6 years in but I will never come to terms with how much this disease has been taken from me. PM me if you lie.

[Violet M]

When you had your nerve blocks did you have any temporary relief of pain -- even for a few hours? If they provided even some temporary relief it could be significant in your diagnosis.

What types of things did your pelvic PT's evaluate and what types of treatments did they use? Different techniques are effective for different people, depending on the root cause of the problem. Did they evaluate your SI joints and pelvic ligaments, both of which can be related to low back and PN? Shooting pains down the sides of your legs could be a different nerve than the PN. Meralgia paresthetica can cause that type of pain. You might want to try seeing a manual therapist, for instance someone who uses the Hesch method, to figure out if you have some sort of mechanical musculoskeletal problem going on. I don't know if your pelvic PT's evaluated that already.

Did your pelvic floor PT's evaluate you internally via the rectum and press on the pudendal nerve to see if you had tenderness along the course of the pudendal nerve? If there is tenderness, that can be valuable sign in the diagnosis of pudendal neuralgia and whether it might be caused by a nerve entrapment either due to ligament compression, or entrapment due to scar tissue, possibly caused by the anal fissure. Were your pelvic floor muscles overly tense? Have you tried rectal suppositories, either containing steroids, such as anusol, or suppositories that contain muscle relaxants such as valium. I am just throwing out a bunch of questions that can be valuable in determining the root cause of the continued pain. I think it is too soon to give up hope and that you have lots more options of things to try. I know it can be draining but eventually you will find a something that helps or a provider who can help and givs you back a good quality of life. You may also want to read Ezer's posts about the mind/body connection. Sometimes because of neuroplasticity your brain gets into a cycle of pain even after healing has taken place and that cycle of pain has to be broken. Maybe you could try something like pool therapy that would help dial down your central nervous system.

Violet

[stephanies]

Volans,

I understand what you are going through and how you feel. I have been in a similar situation for many years. Have you had an MRI to look at the lumbar spine and the full sacrum? For some people there is something there that can be identified as contributing to your pain. Hang in there.

Stephanies

[volans]

The thing that brought me some semblance of relief was tramadol privicaine and Bella Donna. It's a compounded medication I insert rectally. No one will pay for it but for awhile it's all I could use to get through my work day so I could pay my bills. They make all different kinds of suppositories.

I probably got something similar. It was a special compound with gabapentin that is inserted rectally, but because it has to be mixed by a chemist they cost ~200 dollars for just a small pack. And I didn't get much improvement from them. I saw greater temporary relief by applying an ice pack to the area and that method is free.

When you had your nerve blocks did you have any temporary relief of pain -- even for a few hours? If they provided even some temporary relief it could be significant in your diagnosis.

These were indeed diagnostic blocks just meant for temporary relief to see if they could narrow down which nerve is the culprit. I sat in the car 1-2 hours after the blocks and I noticed more or less the same symptoms. On the way back home I couldn't sit down for longer than 40 minutes without the pain becoming too unbearable. The thing that's driving me crazy is that my symptoms seem very consistent with neuralgia yet the blocks do nothing, which is making me question if there is anything else that could be causing this pain.

What types of things did your pelvic PT's evaluate and what types of treatments did they use? Different techniques are effective for different people, depending on the root cause of the problem. Did they evaluate your SI joints and pelvic ligaments, both of which can be related to low back and PN? Shooting pains down the sides of your legs could be a different nerve than the PN. Meralgia paresthetica can cause that type of pain. You might want to try seeing a manual therapist, for instance someone who uses the Hesch method, to figure out if you have some sort of mechanical musculoskeletal problem going on. I don't know if your pelvic PT's evaluated that already.

To be honest I don't know exactly what my PT was doing but it all seemed very basic. She would massage the area and do some internal stretching to relax the pelvic muscles. I should note that the pains in my legs are much more infrequent and about 1/10th the pain level of what I have in my pelvis, so i don't think about that too much. The only thing noteworthy I got from the PT sessions is that whenever she would massage the buttock region the spot just above my sit bones would be extremely sore, as if they were heavily bruised, and I'm not sure what that's indicative of? I always assumed that the root of the pain was coming straight down the center of the pelvis because that's where most of my pain is, but I do wonder if it's more out to the sides. For instance, while sitting for prolonged periods of time causes a good deal of pain, the most unbearable position is actually lying on my back on a hard surface. When I had my MRI they laid me down on this flat, hard table and within 25 minutes I was ready to throw in the towel and get out. I'm sure there are plenty of users here who have had MRIs done. Is it normal to have this much trouble lying flat on a hard surface?

Did your pelvic floor PT's evaluate you internally via the rectum and press on the pudendal nerve to see if you had tenderness along the course of the pudendal nerve? If there is tenderness, that can be valuable sign in the diagnosis of pudendal neuralgia and whether it might be caused by a nerve entrapment either due to ligament compression, or entrapment due to scar tissue, possibly caused by the anal fissure. Were your pelvic floor muscles overly tense? Have you tried rectal suppositories, either containing steroids, such as anusol, or suppositories that contain muscle relaxants such as valium. I am just throwing out a bunch of questions that can be valuable in determining the root cause of the continued pain. I think it is too soon to give up hope and that you have lots more options of things to try. I know it can be draining but eventually you will find a something that helps or a provider who can help and givs you back a good quality of life. You may also want to read Ezer's posts about the mind/body connection. Sometimes because of neuroplasticity your brain gets into a cycle of pain even after healing has taken place and that cycle of pain has to be broken. Maybe you could try something like pool therapy that would help dial down your central nervous system.

Violet

My PT didn't notice that my pelvic floor muscles were overly tense. My pelvic muscles just seem unresponsive. I can neither contract or relax my pelvic muscles and they almost seem paralyzed or that the nerves can't send the right signals. I could just try another PT because I'm running out of ideas.

[Violet M]

That seems kind of odd that your PT didn't find your muscles to be overly tense but was treating you with internal massage to relax the muscles even though they weren't very tense. Seems like a waste to me. Your response to this type of treatment seems similar to what I remember experiencing from internal PT - soreness and a feeling of bruising afterwards. I also had some burning pain afterward. The place I felt it was in the perineum area where the leg meets the body near the sit bones, and that was because the perineal branch of the pudendal nerve was affected the most.

If you have a mechanical nerve entrapment, I'm not sure the laparoscopic decompression surgery would be the route to go since it would not have as good of access to the ligaments as some of the other approaches might. It might be something you want to get a second opinion about but it might be worth it to try a manual therapist first to see if there are mechanical problems that can be fixed, although for me that would have been a waste of time/money too because of the ligaments compressing the nerves. You will have to use your instincts to make that decision.

So, regarding the nerve blocks, if the saddle area was numb or had a temporary loss of sensation it would mean the nerve block medication was able to get to the pudendal nerve area. Then, if you still had pain you would have to question whether the pudendal nerve is your problem. On the other hand, if the saddle area did not become numb or lose sensation temporarily, then the medication probably did not make it to the pudendal nerve. This can happen for a variety of reasons, one of them being thick ligaments or thick scar tissue that is difficult to penetrate with the nerve block. So, unfortunately, nerve blocks are not a 100% accurate diagnostic tool. The ligaments can be thickened at the falciform processs of the sacrotuberous ligament or at the level of the ischial spine.

Violet

[volans]

So, regarding the nerve blocks, if the saddle area was numb or had a temporary loss of sensation it would mean the nerve block medication was able to get to the pudendal nerve area. Then, if you still had pain you would have to question whether the pudendal nerve is your problem. On the other hand, if the saddle area did not become numb or lose sensation temporarily, then the medication probably did not make it to the pudendal nerve. This can happen for a variety of reasons, one of them being thick ligaments or thick scar tissue that is difficult to penetrate with the nerve block. So, unfortunately, nerve blocks are not a 100% accurate diagnostic tool. The ligaments can be thickened at the falciform processs of the sacrotuberous ligament or at the level of the ischial spine.

Violet

I didn't feel any numbness after the injection, just soreness near the injection points.

Yesterday I tried doing some stretches because I'm running out of ideas and i'm afraid I made things worse. I have much more pain in my scrotum and also the pain extends all the way down my legs and feet; especially in the middle of the night. Both the scrotal pain and the leg pain is more prominent on the left than the right. If this is now my new baseline for pain, oh boy I am screwed.

I should note that the pain in my lower legs and feet is most prominent when I get into my usual sleeping position, which is essentially like this: http://bestmattress.in/wp-content/uploa ... sition.jpg but with a big pillow lodged in between my legs. My inner thigh/groin area spasms and contracts a lot and i'm wondering if that could be a lead to narrowing down the leg pain.

Have you had an MRI to look at the lumbar spine and the full sacrum? For some people there is something there that can be identified as contributing to your pain. Hang in there.
Stephanies

I had an MRI of my pelvis. I don't know if that includes the lumbar spine or not.

[Violet M]

Well, if you had no numbness or loss of sensation in the saddle area (perineum, genitals) immediately after your pudendal nerve block, that means the nerve was not blocked so really it would be impossible to make a diagnosis based on a failed nerve block.

[volans]

Well, if you had no numbness or loss of sensation in the saddle area (perineum, genitals) immediately after your pudendal nerve block, that means the nerve was not blocked so really it would be impossible to make a diagnosis based on a failed nerve block.

Unfortunately they already blocked me on two separate occasions and they are pretty much done recommending those, as they are expensive procedures. What's odd is that for such a complicated and costly procedure, immediately after it's done you are wheeled out the door without a word from the doctor who injected you. The nurse just gives you a little sheet to fill out asking what your pain level is at and you're sent home. It would have been nice if they had poked certain areas of my skin to test for numbness or something.

Aside from seeing a pelvic physiotherapist, I think i've exercised all my options with the neurologists/PN doctors. I may just go back to my colorectal doctor as the anal fissure is what started this all. The fissure is obviously healed, but the sphincter muscle feels like it's in a constant clenching state, or that scar tissue developed somewhere as it can never fully loosen, which explains difficultly passing stools or even simply gas. Maybe I can try botox and that will relax the muscle? That sounds less risky than surgery to the pudendal nerve.

[Violet M]

I agree you should have better follow-up after the nerve blocks. Dr. Antolak saw me again little while after the nerve blocks I had but not all doctors do that.

I'm not sure about having Botox near the anal area. You would need to ask about the risk of becoming incontinent of feces. It would depend on which muscles they injected.

Violet