Anastasia1234
Newcomer
Hi All,
I am new here and would love to describe my situation and see if you have any thoughts. Even though I have been researching the heck out of this, this may be the first time I am sharing the full crazy story... it will be long, so if you make to the end, I will be so grateful! Here goes.
I am married with two grown sons. For the past ten years, I have been helping care for my mom who had dementia. I have been extremely close to my brilliant, loving, funny mom, so to watch her deteriorate for years was... well, you can imagine.
Even though I had a lot of anxiety and stress because of this, I thought I was coping fine, and was completely healthy physically.
Until one day in the summer of 2025 (14 months ago) I had to go to the ER with an extreme abdominal pain which turned out to be a large calcified fibroid. I was told by multiple surgeons I needed a hysterectomy, which I desperately wanted to avoid. I finally found a surgeon who was willing to remove just the fibroid itself and leave my uterus in place.
While waiting for the surgery, I developed a dental infection in a crowned tooth that previously had a history of many interventions. There was no pain, but I was told the tooth had to go. I wasn't sure how quickly I would recover after fibroid surgery and wanted to be done, so I had the tooth extracted the day before (!) surgery. (In hindsight this was stupid, but I didn't know any better).
I had the surgery, it went fine, but while I was recovering, the extraction site in my mouth continued to hurt for weeks. Oral surgeon kept telling to give it more time. In the meantime, at the same time I started having weird UTI-like sensations that I thought were caused by the fibroid surgery. The pelvic pain became really bad. I ended up in the ER again, where I was told I had pelvic congestions syndrome - the first I've heard of anything like that. On further examination and testing, it was found that I also had a vascular compression called Nutcracker Syndrome. This all unfolded over a couple of months after surgery. Now I had mouth nerve pain (it sort of fluctuated but was always there), and the crazy vascular pelvic pain.
Add to this many appointments with vascular specialists, testing, researching, freaking out, etc. I couldn't even figure out which one of my two issues was worse - and to be dealing with both at the same time was just crazy. I had a procedure scheduled called ovarian vein embolization. I was really scared about this as well, obviously, especially because from my research it looked like it didn't usually help too many people and actually often made people worse. I was just completely overwhelmed. Then, after about 2-3 months, the pelvic pain just randomly stopped. I canceled embolization.
However the mouth pain was still present - just always there, sometimes better sometimes worse. It would often go away and then come back. By this time I had read all about Atypical Odontalgia and Atypical TN, joined all the FB groups, read all the content, and was completely terrified. In the winter, I was finally seen by a renowned orofacial pain specialist who I am still seeing. He diagnosed a neuroma. I got a steroid injection and topical medication (was also taking Nortriptiline which I stopped a couple of months ago).
My mom passed away in February. My grief has not impacted the pattern of the pain in any way from what I can tell - it's just random.
So - this is the background. I have been told point blank that the neuroma means damaged nerve, and it is unknown whether it will ever resolve, but typically if it hasn't within a year, prognosis is bad. Now, over a year later (!), I still have this issue, and the fear and desperation I feel over this is off the charts. It has not reduced at all even though I have learned about Sarno and TMS months ago and have been trying to 'do the work'. I thought after repeated reminders to self that this is just my brain, things got a little better, but then it flared up again.
Despite trying to let go of the fear and preoccupation, I am thinking about this constantly and not able to change my mindset at all. However, I also have periods when the pain lessens to almost zero, or goes away completely for a few days - then I forget all about and feel euphoric that I 'beat it'. Them inevitably it returns and I am devastated again. I am so tired and demoralized by this endless cycle. I journal, try to meditate and talk to my brain all the time but it doesn't change anything.
I keep thinking of all the people with this that never get better and the horror I feel about my own future only grows. Apart from the Nortryptiline, I've tried every brain tool there is to try: hypnosis, 1 TMS doctor, 2 PRT therapists, a 10 day brain retraining at a clinic, even Scrambler. I have watched ALL the success stories from all the practitioners, read all the books, know all the players in this sphere. I am consuming endless amounts of TMS content, but there is no shift.
I am a successful, high achieving professional and in the past I have been able to achieve most of the life and career goals I set for myself, but here I am feeling powerless. Often I find myself thinking that I am doomed by the nerve damage and no amount of TMS work will make a dent here and I am just wasting time. Other times I feel a little more optimistic. Mostly I feel like some higher power (fate?) is screwing with me and punishing me for something, although I don't know what - I am generally a nice person who cares about others.
Again thank you to those who made it to the end of this novel. I'd love to hear your thoughts especially given how this nightmare began, what it means in terms of TMS, and whether I still have any hope of changing anything.
I am new here and would love to describe my situation and see if you have any thoughts. Even though I have been researching the heck out of this, this may be the first time I am sharing the full crazy story... it will be long, so if you make to the end, I will be so grateful! Here goes.
I am married with two grown sons. For the past ten years, I have been helping care for my mom who had dementia. I have been extremely close to my brilliant, loving, funny mom, so to watch her deteriorate for years was... well, you can imagine.
Even though I had a lot of anxiety and stress because of this, I thought I was coping fine, and was completely healthy physically.
Until one day in the summer of 2025 (14 months ago) I had to go to the ER with an extreme abdominal pain which turned out to be a large calcified fibroid. I was told by multiple surgeons I needed a hysterectomy, which I desperately wanted to avoid. I finally found a surgeon who was willing to remove just the fibroid itself and leave my uterus in place.
While waiting for the surgery, I developed a dental infection in a crowned tooth that previously had a history of many interventions. There was no pain, but I was told the tooth had to go. I wasn't sure how quickly I would recover after fibroid surgery and wanted to be done, so I had the tooth extracted the day before (!) surgery. (In hindsight this was stupid, but I didn't know any better).
I had the surgery, it went fine, but while I was recovering, the extraction site in my mouth continued to hurt for weeks. Oral surgeon kept telling to give it more time. In the meantime, at the same time I started having weird UTI-like sensations that I thought were caused by the fibroid surgery. The pelvic pain became really bad. I ended up in the ER again, where I was told I had pelvic congestions syndrome - the first I've heard of anything like that. On further examination and testing, it was found that I also had a vascular compression called Nutcracker Syndrome. This all unfolded over a couple of months after surgery. Now I had mouth nerve pain (it sort of fluctuated but was always there), and the crazy vascular pelvic pain.
Add to this many appointments with vascular specialists, testing, researching, freaking out, etc. I couldn't even figure out which one of my two issues was worse - and to be dealing with both at the same time was just crazy. I had a procedure scheduled called ovarian vein embolization. I was really scared about this as well, obviously, especially because from my research it looked like it didn't usually help too many people and actually often made people worse. I was just completely overwhelmed. Then, after about 2-3 months, the pelvic pain just randomly stopped. I canceled embolization.
However the mouth pain was still present - just always there, sometimes better sometimes worse. It would often go away and then come back. By this time I had read all about Atypical Odontalgia and Atypical TN, joined all the FB groups, read all the content, and was completely terrified. In the winter, I was finally seen by a renowned orofacial pain specialist who I am still seeing. He diagnosed a neuroma. I got a steroid injection and topical medication (was also taking Nortriptiline which I stopped a couple of months ago).
My mom passed away in February. My grief has not impacted the pattern of the pain in any way from what I can tell - it's just random.
So - this is the background. I have been told point blank that the neuroma means damaged nerve, and it is unknown whether it will ever resolve, but typically if it hasn't within a year, prognosis is bad. Now, over a year later (!), I still have this issue, and the fear and desperation I feel over this is off the charts. It has not reduced at all even though I have learned about Sarno and TMS months ago and have been trying to 'do the work'. I thought after repeated reminders to self that this is just my brain, things got a little better, but then it flared up again.
Despite trying to let go of the fear and preoccupation, I am thinking about this constantly and not able to change my mindset at all. However, I also have periods when the pain lessens to almost zero, or goes away completely for a few days - then I forget all about and feel euphoric that I 'beat it'. Them inevitably it returns and I am devastated again. I am so tired and demoralized by this endless cycle. I journal, try to meditate and talk to my brain all the time but it doesn't change anything.
I keep thinking of all the people with this that never get better and the horror I feel about my own future only grows. Apart from the Nortryptiline, I've tried every brain tool there is to try: hypnosis, 1 TMS doctor, 2 PRT therapists, a 10 day brain retraining at a clinic, even Scrambler. I have watched ALL the success stories from all the practitioners, read all the books, know all the players in this sphere. I am consuming endless amounts of TMS content, but there is no shift.
I am a successful, high achieving professional and in the past I have been able to achieve most of the life and career goals I set for myself, but here I am feeling powerless. Often I find myself thinking that I am doomed by the nerve damage and no amount of TMS work will make a dent here and I am just wasting time. Other times I feel a little more optimistic. Mostly I feel like some higher power (fate?) is screwing with me and punishing me for something, although I don't know what - I am generally a nice person who cares about others.
Again thank you to those who made it to the end of this novel. I'd love to hear your thoughts especially given how this nightmare began, what it means in terms of TMS, and whether I still have any hope of changing anything.
