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Suspected occult hernia, 25F
I’ve had two pelvic MRIs that saw nothing. However, at this point I never knew of occult hernias so I did not tell them to look out specifically for that. Ultrasound came back clear. CT came back clear. After doing my own research, I am very sure I have an occult hernia. I have the exact storyline and symptoms listed in a lot of research from Towfigh. Onset of all my symptoms happened while working as truck unloader at UPS in 2020. I was lifting huge things like wire spools I could not even push off the ground, metal train parts. I was young and dumb.
Symptoms: spasm/twitching in left lower abdomen, especially after sneezing & specific movements but also random sometimes, sharp pain in left lower abdomen & left lower buttocks near sit bone if I take a step too hard/laugh/sneeze, tight band pulling feeling in lower abdomen from side to side but worse on left, can’t sit or stand longer than 5 mins, laying down is also painful but more tolerable, tight band pulling/breaking feeling in left groin/inguinal area, feeling of wetness/pee but not actually leaking it’s as if pee is on the verge of coming out when coughing/laughing/certain movements, trapped gas/having to contort pelvis forward & struggle to release, pulling and numbness near left sit bone depending on position, left vulva pins and needles/burning, burning/pain with penetration, sometimes painful urination, started with heaviness in the perineum and still sometimes feel that heaviness or bulge like feeling, pubic bone pain
Diagnosis: hEDS, pudendal neuralgia, genitofemoral neuralgia, hypertonic pelvic floor disorder, urinary retention, urinary frequency, coccydynia, clitoral paresthesia, degenerative disc disease in lumbar, herniated discs in lumbar
Treatments: pelvic floor PT since 2021 (does not help at all and have gotten so much conflicting information from different providers), nerve block injections in multiple nerves throughout the pelvis and abdomen (did not help), back epidural (did not help), normal PT (did not help), chiropractic (did not help), urogynocology (did not help just performed testing and recommended emsella which greatly worsened pelvic pain)
Anyone with an occult hernia, I’m guessing inguinal or femoral, have these symptoms? Did you do surgery? Did it help years later? Reading some posts here about people wanting to die after getting surgery is so disheartening. I’ve already felt that way due the pain I’m in now that’s existed since I was 22. I’m 25 now and don’t know if there’s anything to look forward to.
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5 Replies
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@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.
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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! -
Your post seems tailor-made to draw Dr. Towfigh’s attention. That is an amazing list of symptoms, diagnosis, and treatment.
How long from the first symptom until you sought treatment? How long did you keep working after the first symptoms? Are you still working, despite the pain? Hard to imagine a 20 year old woman doing that type of physical labor at a company like UPS.
Good luck.
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Why don’t you consult with Dr. Towfigh and have your MRI sent to her?
If you have read her research on imaging and occult hernias, then you know that people reading the MRI scans need to know what they are looking for.
Please don’t be discouraged by all the stories you read on this forum…there is a grossly disproportionate amount of negativity that does not reflect the actual likelihood of having a successful repair.
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Dynamic imaging entails capturing a series of quick time-lapsed images in succession vs. static imaging that capture snapshots in time.
I copied the MRI protocol she has posted in the past, along with some of her notes about it, but I’m not sure if anything has since changed, so I would definitely confirm it with her:
1. For all of our groin pain MR studies, we have the patient place a fiducial marker on the site of the pain.
2. We prefer 3Tesla MRIs, though 1.5T is acceptable. Open MRIs are not acceptable, as they lose resolution for the pelvis.
3. The following are then acquired:– Axial, sagittal, and coronal T2 HASTE with breath hold.
– Axial, sagittal, and coronal T2 HASTE with valsalva.
– Single-slice saggital plane dynamic valsalva acquisitions- typically about 5 individual acquisitions, both through and on either side of the fiducial marker.
– Axial T1 gradient echo.
– Axial T2 fat sat (either fast-spin echo or STIR depending on the machine).Note that some call it a sports hernia protocol, but it is a bit different (most sport hernia protocols don’t do valsalva components).
No reason to use any contrast with MRI (usually oral contrast for CT, can help show bowel and hernia…or IV for inflammation issues).
Important to do dynamic…yes, more labour-intensive, can take 45 min. or more to get everything…the video aspect is key to showing small hernias.
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