Terrible pain. Pelvic mesh or possible hernia?

Hernia Discussion Forums Hernia Discussion Terrible pain. Pelvic mesh or possible hernia?

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    • #11320
      msp651
      Member

      Does anyone have experience with severe pain and pelvic mesh? Initial diagnosis was a hernia, but scans revealed nothing.

      The pain is terrible before and during my period — but it flares at other times, too.

    • #16241
      Good intentions
      Participant

      Can you be more specific? Have you already had a mesh repair? For a hernia? what type of hernia? Where in the pelvis is the pain? Pelvis covers a lot of area.

      There was somebody recently who had a similar issue. Dr. Towfigh is an expert on sources of difficult-to-diagnose pain.

      Good luck. Add more details and somebody will have suggestions.


      @drtowfigh

      The @ function does not seem to be working today.

    • #16257
      drtowfigh
      Keymaster

      [USER=”1193″]msp651[/USER] the answers to your questions are highly dependent on details of your symptoms, what the imaging actually shows, etc. I highly recommend you see a hernia specialist to at least help to narrow down what’s going on. Perhaps you can provide some details here?

    • #16266
      msp651
      Member

      My apologies for the incomplete post.

      I have a complicated history but will try to be succinct. (If this sounds familiar, I posted several years ago at a different stage in the process, but I can’t find those very old posts.)
      I had two pelvic mesh slings for incontinence, not prolapse. The first one (a minisling) never worked, but the second, a TVT, was successful.

      A year after the second sling surgery, right as I was increasing my activities again, I felt the weirdest brief zinging pain deep in my groin when shifting positions in bed, and after that I started experiencing unbearable pelvic and groin pain. I told doctors at the time that the onset felt like something broke or tore internally.

      I have been to a long list of specialists and have ruled out potential ob/gyn causes. I am overweight but used to be quite active.
      Sometimes PT helps a little. Other times it makes it worse.

      Doctors initially suspected a femoral hernia and scheduled surgery, but ultrasounds and MRIs revealed nothing. Hernia surgery was cancelled.

      I went to a local hernia specialist (recommended through this blog) who was very kind and compassionate but wasn’t convinced it was a hernia. Instead, she wondered whether the pain was caused by the mesh slings.

      After a long list of other tests and treatments, I had significant surgery to have the mesh slings removed.

      Unfortunately, the debilitating pain persists.

      It is predictably bad in the days before and during my period, but I have severe flare-ups throughout the month.

      Lying down doesn’t help significantly, unless I am flat on my back.

      Lying on my side makes it worse, and the pain often keeps me up at night.

      Gas/bloating makes it worse.

      Standing or sitting for extending periods of time sets it off.

      Walking sets it off.

      It’s a stabbing/pinching/burning/tearing pain that brings me to tears.

      It’s mainly on one side, but sometimes both sides hurt.

      Lifting, coughing, laughing or climbing stairs are NOT triggers for the pain.

      There is always an “epicenter” to the pain in my groin/pelvic area, but it radiates down my inner thigh, up my side, into my genitals and back. It sometimes feels like there is a clamp or a knife in my groin. Pelvic floor therapist often remarked about internal muscle “banding” but had no solutions.

      There is no bulge.

      I have dealt with this since 2015, and doctors seem to be at a loss.

      I have had tried so many things to treat the pain, including PT, acupuncture, dry needling, meds and nerve blocks. I can’t find long-term relief, and I long to return to all the exercise and activity I used to enjoy.

      I have read a lot about chronic pain and how our bodies turn up the volume on it. Even considering that, the mesh removal (a major surgical undertaking) didn’t hurt nearly as much as the chronic groin pain

      The mesh-removal surgeon says that it’s nerve irritation related to mesh and multiple surgeries. That said, the initial hernia theory still eats at me.

      I’m writing because I know there is a lot of chronic pain on this blog, and I’m wondering if others have thoughts or ideas.

      It sometimes feels like I’m being torn apart.

      Does this sound familiar to anyone?

    • #16267
      msp651
      Member

      My apologies for the incomplete post.

      I have a complicated history but will try to be succinct. (If this sounds familiar, I posted several years ago at a different stage in the process, but I can’t find those very old posts.)
      I had two pelvic mesh slings for incontinence, not prolapse. The first one (a minisling) never worked, but the second, a TVT, was successful.

      A year after the second sling surgery, right as I was increasing my activities again, I felt the weirdest brief zinging pain deep in my groin when shifting positions in bed, and after that I started experiencing unbearable pelvic and groin pain. I told doctors at the time that the onset felt like something broke or tore internally.

      I have been to a long list of specialists and have ruled out potential ob/gyn causes.
      Sometimes PT helps a little. Other times it makes it worse.

      Doctors initially suspected a femoral hernia and scheduled surgery, but ultrasounds and MRIs revealed nothing. Hernia surgery was cancelled.

      I went to a local hernia specialist (recommended through this blog) who was very kind and compassionate but wasn’t convinced it was a hernia. Instead, she wondered whether the pain was caused by the mesh slings.

      After a long list of other tests and treatments, I had significant surgery to have the mesh slings removed.

      Unfortunately, the pain persists.

      It is predictably bad in the days before and during my period, but I have severe flare-ups throughout the month.

      Lying down doesn’t help significantly, unless I am flat on my back.

      Lying on my side makes it worse, and the pain often keeps me up at night.

      Gas/bloating makes it worse.

      Standing or sitting for extending periods of time sets it off.

      Walking sets it off.

      It’s a stabbing/pinching/burning/tearing pain that brings me to tears.

      It’s mainly on one side, but sometimes both sides hurt.

      Lifting, coughing, laughing or climbing stairs are NOT triggers for the pain.

      There is always an “epicenter” to the pain in my groin/pelvic area, but it radiates down my leg and back. It sometimes feels like there is a clamp or a knife in my groin.

      There is no bulge.

      I have dealt with this since 2015, and doctors seem to be at a loss.

      I have had tried so many things to treat the pain, including PT, acupuncture, dry needling, meds and nerve blocks. I can’t find long-term relief, and I long to return to all the exercise and activity I used to enjoy.

      I have read a lot about chronic pain and how our bodies turn up the volume on it. Even considering that, the mesh removal (a major surgical undertaking) didn’t hurt nearly as much as the chronic groin pain

      The mesh-removal surgeon says that it’s nerve irritation related to mesh and multiple surgeries. That said, the initial hernia theory still eats at me.

      I’m writing because I know there is a lot of chronic pain on this blog, and I’m wondering if others have thoughts or ideas.

      It sometimes feels like I’m being torn apart.

      Does this sound familiar to anyone? Any ideas?

    • #16270
      msp651
      Member

      A clarification: When I say the pain radiates down my leg, I mean the front of my leg and my inner thigh, down to my knee. Sometimes it goes up my side. It’s miserable.

    • #16296
      Good intentions
      Participant

      Have you read the Sports Hernia thread? There might be some clues there.

      Hernia pain is, in essence, nerve pain, as nerves get stretched and damaged in the area of the tissue damage. Since you’ve had all of that surgery in the area and probably have lots of scar tissue pulling in unusual ways, even if you had a hernia, and had it repaired, it might not solve your pain problem directly. Just a perspective.

      Have you tried varying or expanding your activities to see if anything helps? I have had short times, days long, of persistent pain after mesh removal that would not diminish with rest. I decided, based on the research like that of Dr. Bendavid, that the scar tissue might just need to be moved around to get fluids flowing and help with moving irritants out. Nerves are growing in to areas of low blood flow, the scar tissue. So I went for a solid 2 mile run. And it worked, the pain went away and I got back on the path of recovery. It’s counterintuitive but it’s part of my routine now. Certain types of pain are a sign that I need to do more.

      I also found, back when I was trying to make the mesh work, that lifting weights had a similar effect. The increased abdominal pressure, and straining to lift, seemed to stretch and move things to where they felt better. It wasn’t the range of motion it was the activation of the muscles, I think.

      In short, I’m suggesting that maybe you try to stress the problem areas, in a controlled fashion. Go beyond walking or stretching, maybe do something more extreme. Ideally, you’d have a professional physical therapist help you, but I don’t think that the problem is amenable to the common therapies. It’s a risk of more pain, but if you don’t overdo it you should at least be able to get back to where you are now.

      I also just suggested this in somebody else’s thread – keep a log of your activities and how you feel. It looks like you already do, but make sure that you track the time between also. I’ve found that some actions have a delayed effect, and you can miss the correlation if you don’t keep track.

    • #16308
      Good intentions
      Participant

      Hello msp. Just wanted to let you know that I did actually post a long reply to you but it got flagged as spam. It’s out there somewhere, I hope that Dr. Towfigh will release it.

      The gist of the post was about keeping a log of what works and what doesn’t. And possibly ramping up activities to see how much is too much. Since you’ve been dealing with it for three years you might feel like you are familiar with it, but I’ve found that some actions can cause a delayed response. The correlation shows up as you look back on what you’ve been doing.

      Good luck.

    • #16410
      msp651
      Member

      Thanks. I’ve kept pain diaries off an on for three years. One pattern is that I will do a stretch that feels very intense, and then an hour later will be in excruciating pain. Smaller movements (Feldenkrais) aren’t as risky, but occasionally they cause flare-ups as well.

      I will look for the sports hernia threads.

      Anyone else have thoughts?

    • #16411
      msp651
      Member

      I’m not an athlete at all, and the onset of the tearing pain started with a shift in positions in bed. So I’m skeptical of the sports hernia label. It’s ridiculously painful.

    • #16413
      Good intentions
      Participant

      “Sports hernia” is one of those misnomers, like “tennis elbow”. Even athletic pubalgia is misleading. Good luck. The info about the onset of the problem is probably a good clue for the right surgeon.

    • #16414
      Momof4
      Participant

      Sent you a private message answering some of your questions about symptoms. Hope it helps.

    • #16416
      msp651
      Member

      Thanks so much for the message.

      I’m truly feeling desperate for answers.I used to walk and bike for miles. Now I can barely walk around the block.

    • #16417
      msp651
      Member
      quote drtowfigh:

      [USER=”1193″]msp651[/USER] the answers to your questions are highly dependent on details of your symptoms, what the imaging actually shows, etc. I highly recommend you see a hernia specialist to at least help to narrow down what’s going on. Perhaps you can provide some details here?

      I wrote out a longer history. I am open to any advice. Thanks!

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