How do I know if this is actually TMS/Emotional trauma or pudendal neuralgia?

Hello everyone!

My journey started back in 2007. Out of the blue, I started having lower back pain with really uncomfortable tailbone pain. I also started having a lot of increased pelvic discomfort. I already knew I had bladder prolapse and had had it since giving birth to my last child in 2000, so I always had some level of discomfort already. This was different though. Much worse. I had an MRI done and found that I have minor issues with a lumbar bulging disc. I can't remember if I also had the lumbar stenosis at that time or if it came later. Anyway, I decided to see a urogynecologist because I was sure the prolapse had worsened. Apparently it had worsened along with other pelvic organs also prolapsing as well. The doctor said I would benefit from a hysterectomy with full pelvic repairs and that it might also help with my lower back and tailbone symptoms. Unfortunately, it did not. I had an increase in pain in the lower back, the tailbone and sacral area after the surgery and I also began having a lot of discomfort when I sat. I immediately had some issues with my bladder and my bowels functioning properly for quite awhile afterwards as well. I have also had chronic constipation ever since the surgery as well. Another side effect I experienced was pain in the left side of my private area with electrical shock sensations occurring when I tried to take a step with my left leg. That ended up resolving after several weeks but the other symptoms remained. I still to this day can run my fingernails over the back of my left leg and feel a nerve like sensation higher up my leg and into my buttocks. I have no idea why. I ended up going to pelvic floor physical therapy with zero results. I then went to a pain specialist who did a spinal cord stimulator trial with zero results.

While all of this was going on, I was doing a ton of research online. The only thing I found that sounded like my symptoms was PN or PNE. I stopped sitting altogether for a long while because I was terrified I would damage the nerve even more. It wasn't excruciating to sit at that point though, but it was pretty uncomfortable. I was definitely scared of making things worse.

After a couple of years of this, I went to a new urogynecologist, and during my third visit with the clinic, I was asked by one of the doctors, "what exactly do you want us to do for you?" It was then and there that I stopped trying to get help and realized I would have to live the rest of my life being unable to comfortably sit, being unable to go on long flights or car rides, being unable to ride a bike, being unable to lay on my back without feeling like I was lying on something at my sacrum level and being unable to have sex comfortably.

Fast forward to the past 1.5 years. I started experiencing numbness in my leg and foot, and shortly thereafter, I also developed severe pain in my neck. I went in for an MRI and discovered I had cervical foraminal stenosis along with lumbar stenosis to go along with the lumbar bulging disc that was discovered back in 2007. I was in such intense pain with my neck that I looked into treatments that might help me. I went and received conventional chiropractic care but the quick jerking movements made it worse and it hurt like hell. I went to a pt and she was able to give me a little more mobility but couldn't really decrease my pain much. I then found non-surgical chiropractic decompression therapy and it helped a LOT. It decreased my pain significantly at that time but didn't get rid of it completely.

During the time I was having those treatments, I also experienced an ankle injury. When I went to take a step, I couldn't feel my ankle and went down hard. I also, inexplicably, began having a return of the pain in my tailbone and sacrum with a new pain of burning in my upper buttocks. It was after it returned full force over the course of a few weeks time that I finally began realizing that it had actually gotten gradually somewhat better over the past few years. I was having discomfort when sitting and when lying on my back after longer period of time than I was before. I was able to do things more comfortably than I was able to before.

Unfortunately, however, it is now really bad again, much worse than it ever was in the past and I have no clue why. I'm not sure how decompression on my neck and gentle spinal adjustments for my minor low back pain could cause this horrible burning pain I am now experiencing again. I will have my 4th appointment with a pelvic floor pt tomorrow but I am so far having zero results. She has said I have a tight pelvic floor and a return of my prolapse, but she doesn't entertain the thought that it's pn. She says it's rarely pn when people think it is. If that's true, why can I not sit and lie on my back amd why do I have horrible burning pain in my upper buttocks, sacrum and tailbone with sensations in my genital/anal area that feels like the itching/burning of a yeast infection when I bend over or sit?

My neck and head pain have also returned after stopping the cervical decompression treatments and I have also recently strained my MCL for some reason.

I have no idea what is happening to me and most doctors are less than helpful with what I am experiencing. The answer is surgery for my neck, back and prolapse, pt for my tight pelvic floor and meds for the pain.

I am currently considering seeing a local gynecologist who also deals with pelvic nerve issues and a pain specialist who can do a nerve block into the pudendal nerve to check for neuralgia. I have been to the pudendal hope website and it just depresses me more as everyone is in hell and no one ever seems to recover. My life feels like it is over and suicide has entered my mind more than once lately. I can't live like this.

I came across this website today and have begun to wonder if any of the pain is coming from my mind? I am definitely the type of person who obsesses over ailments and always jumps to the worst case scenario. I just don't know if those things are playing a roll in this or not I also wonder if any of it has an emotional component because I have been married to a man for 25 years who was diagnosed 5 years ago with bipolar disorder and a possible personality disorder. He has become increasingly verbally, mentally, emotionally amd financially abusive towards me in the past 7 or 8 years to where it is now unbearable living with him.

Anyway, I'm desperate. I'm not sure if my pain has anything to do with TMS since I have had a pelvic surgery in the past and I do have a diagnosis of spinal issues from recent MRIs.

Any input and opinions are welcome and greatly appreciated. I really need some help here. Thank you for taking the time to read this.

 

Hi:
I’m sorry for your pain and suffering.
Since you have been dealing with medical diagnoses, I suggest you contact a TMS Dr. who can help you sort things out.
Dr. David Hanscom, Dr. Schubiner and Dr. Schecter are to TMS docs in the US. There are a few others, and there is an up to date list and contacts on the https://ppdassociation.org/ (Psychophysiologic Disorders Association)
Website. You can often do these appointments virtually, sending in test results, having some Zoom meetings. Each of these Doctors have written books and have websites. I would choose one to contact (Dr. Hanscom specializes in back pain), set up your appointment and read their book.
In the mean time, you are suffering mentally, Dr. Schubiner’s website has some great pain education videos,
https://unlearnyourpain.com/mind-body-videos/ (Mind Body Videos - Dr. Howard Schubiner's Mind Body Medicine)
and many easy to read articles.
Dr. Hanscom’s website is loaded https://backincontrol.com/ (Home - Back in Control) with information

best wishes to you sorting things out.