inagony
Forum Replies Created
-
@markt thank you so much for sending the MRI info over. I was able to get a referral for this specific protocol but now the issue is finding a place who will perform it as instructed. I’ve tried two places, one facility that’s more local, one in Richmond, VA but they both said no when I read them the protocol. I was even transferred to supervisors of radiology at both. I don’t know why they’re not willing to just alter their protocol? I am trying DC area next. I may just have to go to New York because I was told someone could do it up there.
My symptoms and experience have been essentially identical to one of Dr Towfighs HerniaTalk episodes with Dr Sarrel. I was diagnosed with hypertonic pelvic floor disorder and pudendal neuralgia in 2021. Up until this year, Drs haven’t been able to say whether groin pain stems from herniated discs & DDD (injury 2020 but it’s so mild that my recent ortho visit said I shouldn’t try another epidural because they doubt the pelvic issues stem from the back) or an isolated pelvic issue. I did the nerve block route that didn’t help anything, and it was multiple nerves not just pudendal, which they also mentioned happens when it’s an occult hernia. My pain is most often genitofemoral. Been in pelvic floor PT for 2 years with no progress. It’s the location of my pain, the identical symptoms and path I was put on by Drs (pudendal neuralgia/nerve blocks) that make me believe it has to be a hernia. She mentioned PN is so rare and it’s often misdiagnosed when it’s an occult hernia and they put people down that whole path of blocks, ablations etc but they’re not beneficial. I also don’t have period issues like extreme pain so I have no suspicions for endometriosis.
-
@goodintentions for some reason your name isn’t popping up to @ you.
Given that the majority of my research is from Dr. Towfigh’s material, that makes sense. Prior to finding her, I only saw various articles online here and there. It seems that not many others speak on occult hernias in women. This makes sense, if I do have one, why I’ve been possibly misdiagnosed and sent down the wrong treatment path for years with no success. I have contacted her though. I doubt that much could be done for me through this forum because I’m not a patient. I was hoping to speak with people in the same boat who are post procedure. Hear success stories. I figured giving the most detailed account of my experience would allow people to easily identify their shared experience/symptoms.
I stopped working at UPS towards the end of December 2020. In October of 2020, I saw my PCP requesting muscle relaxers for the pain I was in. So, I sought treatment technically while still employed. I had an appointment with physical therapy by the first week of January 2021 when pain persisted. I was also not even given the muscle relaxers because I was not taken seriously. With the PT, I tried to advocate for myself that I needed imaging referrals because the pain was so severe. Due to my age, and probably being female, I was not taken seriously. Even when I first finally got imaging it was only for X-rays which found mild scoliosis. It took months longer to finally get MRIs. Only to find that I was correct when herniated discs and degenerative disc disease were found. I’ve been consistently in treatment ever since that Jan 2021 PT appointment. I’ve worked 1 month and 2 weeks total since UPS but not at UPS. I would be physically incapable of working most jobs. I legitimately can not sit for longer than 5 minutes. Honestly more like even 3 minutes. Same with standing. It causes extreme pain. Thankfully have had family and friends to help support me. I filed for disability in January 2022. It’s misery. Not what I wanted for my life by any means.
“A company like UPS”, after my experience with them, I don’t think it’s a great company. It was poorly managed with horrible supervision. It’s super unfortunate that I was only 22 and given that position. Sadly, I was working two jobs and trying to pay rent so I was desperate for something “higher paying” in my mind at the time… (ruin your body for not even a livable wage) It was seasonal. I thought I would try to stay on after since they’re a union. I thought I could have a steady income and finish college because they have a program for that. I was 1 of 3 women who worked as an unloader. The other two were in their 30s-40s. The other women got to work as scanners and sorters at the end of the conveyor belt. I requested this position from the supervisors but was denied because I was hired only seasonally and specifically as an unloader. To top it off, because none of the doctors I saw took the severity of my pain seriously until it was too late, I missed the window to file for workers comp. Ruined my body and life as I knew it was over after 3 months of work.
-
Not sure how to work this forum yet.
@markt
Definitely, yes. I sent a message over the weekend on the website “contact us”just asking where I could locate the specific MRI protocol she advises that is mentioned in one of her HerniaTalk interviews. I assume she has plenty of message requests and it will probably be a few days before hearing back. In reading this forum, I see some people mentioning something called a “dynamic” MRI. I had never heard of this. I think this may be the protocol she recommends. I wasn’t sure if I’d need this prior to a consult with her. Thank you for the uplifting message. I definitely have been reading a lot of scary stuff! -
What was your experience like and how can I find reviews on him outside of this site
-
What was your experience like?