Is what I’m describing a possible hernia?

Hernia Discussion Forums Hernia Discussion Is what I’m describing a possible hernia?

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    • #29306

      Apologies for the convoluted mess, hopefully this is easy enough to understand.

      Location: Ottawa, Ontario, Canada

      Age: 29

      Male, 5’7, 130 pounds. Non Smoker, regular exercise, (relatively) healthy diet.

      Hi there Hernia Talk,

      I’ve been dealing with what has been a medical mystery for the last 7 years, and I’d like to get some advice or suggestions for a way forward as I’m getting so tired of living life at 85%. I’ve had ultrasounds, MRIs, cystocopies, and urine flow tests and no diagnosis has been found for waht’s going on with me. My hunch is that I have an occult hernia containing part of my bowel and bladder, as the symptoms seem to best describe what’s going on.

      It all started when I began running the summer before going to school for my Bachelor of Ed (May 2014). I had never had a history of running, and I pushed myself much too hard. I ended up waking up one day with an extreme, kind of dull pain in my abdomen, that eventually localised to the lower, right quadrant (my inguinal area). I ended up going to the ER and the doctor told me that it was “the beginning of a hernia,” and that we should “watch and wait” before doing anything. I’ve essentially been doing just that, but over the course of 7 years (since that running period) I’ve had the following symptoms:

      – dull, tender pain in the lower right side of my abdomen

      – changing stool shape (from extreme diarrhea to round stool, to L shaped and pencil shaped stool)

      – dull pain in my lower back (occasional)

      – right testicle sits “tight” to my body

      – painful, painful ejaculations (I feel it on my right side)

      – a bladder that never seems to properly empty/nocturia

      Because, frankly this health issue is complicated and has alot of different things going on I’ll leave a timeline below, because not all of these symptoms showed up at once:

      2014 – occasional dull pain in right side/testicle/back, painful ejaculations (rare). After going to the ER in May I had an ultrasound in the fall, which showed nothing.

      2015 – similar symptoms. I went to Korea after graduation to teach and while I was there I ended up seeing some specialists who said the following:

      I had congested spermatic cords/epididymitis, and that I needed a course of antibiotics. I took them as per the doctors orders, but nothing changed, and I went in for an ultrasound. The ultrasound specialist showed my what he saw and that there was part of my bowel in my inguinal canal. Unfortunately the doctor at the follow up explained away what was said and that it was something entirely different. No further follow up.

      2016 – after coming home from Korea I went to Shouldice Hospital in (GTA area) thinking I could maybe get a definitive answer as to whether or not what was going on was a hernia. I was told because I didn’t have a bulge or any other classic signs of a hernia (though they didn’t do a physical exam) that I most likely had a groin strain and that it would eventually go away. My symptoms this year worsened – I began having bladder issues. It never seemed like my bladder would fully empty, and I could not for whatever reason sleep on my back because I constantly felt like I still had to go pee. I was also getting up 5, 10 or more times in a night to empty my bladder. These new symptoms started after I had returned home to Canada and was working retail. I remember lifting a very heavy garbage bag, feeling something move in my core, and then having these bladder issues. This has continued on until today.

      2017 – occasional dull pain in right side/testicle/back, painful ejaculations (rare), a bladder that never seems to properly empty/nocturia.

      I saw a private doctor who did a head to toe analysis and connected me with a urologist due to the bladder issues having the biggest affect on my quality of life. I was put on Mybetriq to help with my sleep, and the urologist ordered a cystocopy of my bladder to see what was going on. There was nothing definitive. I also had a pelvic MRI to rule out anything else, and there was nothing found. The diagnosis given to me was an overactive bladder.

      2018 – similar symptoms. In some ways I had gotten used to the 85% quality of life I had been having and went traveling in late 2017. I returned back to Canada in June and reconnected with the urologist for an update on what was going on. After talking I had Uroflowmetry, and the results were fairly definitive that something was going on:

      lots of bladder diverticulae, and the pressure from my bladder when I was peeing literally went off the measurement page, and that my bladder resembled that of someone in their 50s.

      The follow was more medication to help calm my bladder, and the plan was to have MRI’s of my spine and head in 2019.

      2019 – I had the requested MRIs of my head and spine. symptoms stayed the same.

      2020 – Was connected with a neurologist, and the plan was to have me get another set of MRIs and to see a second urologist who suggested I get another cystocopy. Ultimately at this point I was too frustrated with a lack of clarity with what was going on or any answers that I didn’t get the blood work done for the MRIs and refused to have the cystocopy (the urologist insisted that I needed to have this done without being sedated because of my hypospadias and concern of my bladder issues being due to a stricture). Symptoms stayed the same.

      2021 – Over the past couple months my symptoms have worsened. Current symptoms:

      – dull, tender pain in the lower right side of my abdomen (rare now)

      – changing stool shape (from extreme diarrhea to round stool, to L shaped and pencil shaped stool)

      – issues passing stool. Feel full, urge to go poop but when I go either I can’t pass stool or it doesn’t seem to come out fully, almost like it’s sliding past something. This issue happened literally one morning in April and hasn’t changed or improved with diet, exercise, laxatives, etc. I still am able to pass stool but it is MUCH different than before.

      – dull pain in my lower back (rare now)

      – right testicle sits “tight” to my body

      – painful, painful ejaculations (I feel it on both sides of my abdomen/testicles)

      – a bladder that never seems to properly empty/nocturia (not as bad as before, only getting up two or three times a night)

      Currently I’m waiting for a CT scan and colonoscopy, and will in fact be seeing another neurologist (in a weird stroke of luck the neurologist I saw last year retired and their office has set me up with the replacement).

      My medical history the past 7 years probably sounds insane, convoluted, and confusing. All I want is SOME sort of answer, diagnosis, or way forward with what’s going on with my body so I can live a normal life. Id like to have a normal, unbroken sleep pattern again. I’d like to feel confident enough to date and NOT wear incontinence gear. I’d like to not have painful ejaculations.

      Is what I’m describing a possible hernia? I would also like some advice as to a plan of action or way forward. It sucks having no clue what’s going on.

      Can elaborate as needed, and thanks in advance.

    • #29307
      Good intentions

      Quite a bit has been written on the forum about how difficult it is to identify a hernia by imaging methods. Dr. Towfigh has presented and published about it.

      Have you considered Dr. Kang’s Gibbeum Hospital? Apparently they do imaging the day of surgery to confirm the details of the problem. Here is a post from the forum from a patient who had a hernia repaired there. They probably have an extensive record of the various side effects of hernias and might recognize your symptoms. At the least they might be able to tell you that you definitely do not have a hernia, if that is the case.

    • #29314

      @Goodintentions, must one go to such extremes to get tested? Now, I for one found out that testing can be hit or miss, especially if the ultrasound radiologist is unfamiliar with the Valsalva maneuver! Even getting the Valsalva test can be unreliable?

    • #29316
      Good intentions

      pinto, you are right, it shouldn’t take such extreme measures. I thought of Dr. Kang first because I remembered the post about the imaging work that they do before surgery, plus the fact that he has examined thousands (I think) of patients.

      A better answer is that anyone who thinks that they might have a hernia should find a surgeon who does pure tissue repairs as the first choice,and mesh repairs only for the circumstance where a pure tissue repair would give poorer long-term results. Any surgeon that recommends mesh as a first choice would not be a hernia repair expert. They would be a mesh implantation expert. Find a hernia repair expert.

      My views have shifted more and more toward the thought that any surgeon who recommends a mesh repair as the first, or only, choice, is captured by the mesh repair industry. The evidence just seems overwhelming that a pure tissue repair for a typical hernia is the best choice for the long-term welfare of the patient. The deviations that we all see, with all of the variations on mesh devices, and the focus on laparoscopic methods for mesh implantation, just aren’t supported in terms of patient welfare. The patient is paying the price, with their long-term health, for all of these new devices and new technology.

      Somehow the hernia repair field has been warped in to a business that has to be maintained by using mesh where it is not best for the patient.

      Dr. Brown, Dr. Muschaweck and colleagues, and others that do pure tissue repairs would be where NickMaybe should focus his efforts. Because they have already chosen the best method for the patient’s health and welfare. The others have not, they have chosen the mesh implantation business model, which is constantly working to avoid addressing the problems of mesh.

    • #29330

      @Goodintentions, as always you present some interesting information. I must ask though why would the surgeon’s method (mesh, non-mesh, etc.) play a role in ultrasound testing? (It does in my case locally because of my prior contacts with them but that’s another story.) Probably the testing is done by a radiologist and so out of the hands of the surgeon. I can’t see how surgical method influences the test result, whether positive or negative.

    • #29331
      Good intentions

      Doctors trained to read/interpret images are generalists. They will only recognize the common signs of a hernia. They interpret images for a whole range of problems, and basically just look for abnormalities.

      Hernia specialists who have learned to interpret images will have the advantage of correlating what they see on the image with what they saw during the physical exam plus the discussion with the patient. They will have all of it in their head at the same time.

      That’s just my view. I had imaging done for my mesh problems, Bard SoftMesh implanted via TEP, and the report just listed things that might cause pain but said that they did not see anything significantly wrong. My surgeon did not want to hear about problems because problems are supposed to be the fault of the surgeon, for mesh implantations, so he used the image interpretation as a reason to pass me on to someone else. He did the same thing with other issues, passing me off to a urologist who said that they knew nothing about mesh, except that it got in the way when they did prostate surgery.

      That’s also an example of how my surgone was a “mesh implantation expert” but not a hernia expert. He could get the mesh in but was lost when there were problems.

    • #29333

      Good Intentions, I see how medical approach can become a “bent” leading to misdirection of practice. Bear with me though because you went a bit in a different direction. You spoke of the situation, I believe, of a mesh patient in post-op pain whose test result said there was no real issue. However the present case–@nickmaybehasahernia’s–wonders if his is actually a hernia. My question was about detecting hernia not pain (or source of it). An earlier post of yours suggested a surgeon’s approach could color test detection for hernia. So if you don’t mind, would you clarify that.

      I assume a surgeon relies on a radiologist’s reporting whether a hernia is detected or not. Regardless of surgical school of thought, isn’t the radiologist’s conclusion (pos. or neg.) accepted? That is, there is no “railroading” of the patient done necessarily by a certain method of surgery, right? The only real question for the patient is where to find valid testing. For only that, it should not matter whether the surgeon is “mesh” or “non-mesh” advocate, right? He/she has a qualified radiologist to do the testing.

    • #29334
      Good intentions

      These two references are very descriptive. I am far from an expert. I became more aware of this possibility after my own personal experience with imaging.

      About 2 minutes in in the video.

      And a summarized publication, with an excerpt of the conclusion.

      “Conclusions: Most radiologic reports issued for CT and MRI studies were incorrect for evaluation of occult inguinal hernia. Over-read radiologist reports were more than twice as accurate when evaluating the same images. The physician who is relying on radiologic reports to determine plan of care for a patient with groin or pelvic pain should inquire further into any negative study, especially if there is strong clinical suspicion for inguinal hernia.”

    • #29340

      Ok, we have questionable validity rather than reliability by this statement:

      >>“Conclusions: Most radiologic reports issued for CT and MRI studies were incorrect for evaluation of occult inguinal hernia.<<

      CTs are not all the same nor are MRIs. If the proper CT and MRI tests are not used for herniae, then the testing is likely invalid. That consequently lowers reliability. But my question was assuming a highly reliable ultrasound valsalva test result. 🙂

      • This reply was modified 1 year, 5 months ago by pinto.
    • #29495

      @pinto @good-intentions

      Thank you both for your kind responses and follow up. I’m sorry I didn’t respond to either of you sooner. I’d just like to summarise what you’ve said, based on your replies:

      1. While (possibly) an extreme measure, going to a surgeon who does pure tissue repairs (such as Dr. Kang/Brown/colleagues) is a good step to take, since many surgeons who do hernia repair using mesh are not hernia experts, but mesh experts and won’t have the expertise to fully understand issues surrounding occult hernias.

      2. Imaging studies can often be inconclusive with occult hernias, and follow up needs to be done if there is a clinical suspicion of a hernia.

      I have a follow up question – is there any particular next steps I should be doing, in terms of whether or not my symptoms are related to a hernia? I ask only because I don’t know how exactly I’d go about getting an appointment with a surgeon to talk about what’s going on.

      On my end, a slight update: after meeting with this new neurologist I will be having a physical examination and spinal fluid taken out for testing this summer, as the neurologist feels that a lot of my symptoms are related to a syrinx. I guess once this particular round of testing is done and if any neurological issues are ruled out then my thoughts about my symptoms being the signs of something physical going on have a little more weight.

    • #29542

      does any of this clinical, imaging matter? You are going to have to be opened up anyway no matter what if the symptoms are bad enough to live with so…
      I have no lump, severe pain and intermittent nausea, 1 ultrasound said hernia, 2 others said no hernia with valsalva but inflammed ganglions. Frankly i don´t think they have a clue unless they take a look.
      Maybe MRI will be more useful if you can get a referral for it. Even the private MRI clinics want a referral although in some countries they got a doctor at the private MRI clinic just waiting to give out a prescription )

    • #29559

      @newagehernia thanks for the follow up. I’m going to go get an MRI privately done and then go from there. You’re right in that I will most likely need to be opened up to see what’s really on.

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