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Next step advice!! Pittsburgh PA
I feel like I have a pretty typical story to everyone on this forum. Over the course of 18 months I’ve been to an orthopedic surgeon, a bariatric/hernia specialist, a gyno, and a PCP all of which have seemed to dismuss the idea of a hernia without also giving me any idea as to what my pain could be. My pain started off as severe hip pain and grew to varying levels of pain in the right side of my pelvis. As many articles I have read claim pelvic pain can project to the hip I am not sure if these are two separate issues or if they are one in the same. The pain gets worse with certain exercise activities, prolonged standing/walking, and lots of pain turning from side to side as I am sleeping at night. I found several articles referencing Dr. Towfigh and “hidden hernias” and I was hoping I could get advice on what my next steps should be. Since my initial consult with the ortho was for my hip I have received Xrays and MRIs of my right hip area (which does include some pelvis) and my spine. I’ve also had bloodwork done. All of these tests have shown have been negative for adnormalities according to the docs except for just a diagnosis of inflammation in my pelvic area (deemed osteitis pubis). I’ve been through 4 rounds of physical therapy including the pelvic floor specialist I am currently seeing. None of my tests performed have been specifically focused on a hernia in particular, but I woudl like be armed with questions/tests to ask of the next doctor or specialist I see…..any advice out there??? I did contact Dr. Towfighs office and was recommended to see a surgeon in Hershey, PA (Eric Pauli) but am hesitant to jump right to a hernia surgeon without having a plan of action. HELP!
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11 Replies
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Update: CT scan report basically says I look fine (no internal/external hernias) and the only notes in the report is that I have some symptoms/indications of Crohn’s disease. I have not actually heard from the doctor who ordered the scans for me to see what he thinks, but I have ordered copies of the CT scan to take elsewhere as I still do not have an answer.
In regards to teh Crohn’s, since I have not yet been diagnosed with a hernia, is it possible that this could explain my pain? I do not have any of the symptoms of Crohn’s disease according to research I have done and it does seem like it would explain the pain I have been having.
My question is, who do I go to next to figure out what is wrong with me? Should I rule out a hernia since one scan has said I do not have one? When I mentioned to my PCP and the technician about doing vasalva during the CT scan they looked at me like “what does that have to do with this?”. I did try to do the “bearing down” technique on my own during the scan when the machine told me to hold my breath but not sure I was doing it correctly.
Edit: I have an appointment with both an orthopedic specialist and a general surgeon (Dr. Zuckerbraun) in Pittsburgh who have done a lot of work together to help patients with hip and/or core muscle injuries which is what I’m now being told it sounds like I have. I see the ortho this friday the 12th and see Dr. Zuckerbraun on 25th. Will udpate after!
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I would get CT with valsalva during scan.
Pauli and Zuckerbraun all capable.
Seeing an orthopedist is fine but they don’t fix sports hernias.
I’m happy to look at your scan if you need. -
So update on where I am at. Still deciding what/who to go to to figure what is wrong with me. I have a CT of abdomen/pelvis scheduled for next week at teh order of my PCP, but I do not trust the guy. I also have an appointment scheduled with another orthopedic who specializes in the hip and also works with sports hernia patients on January 12th. I am debating whether I should even have the CT done because wondering if this new guy will want to do his own or if it is to my advantage to get it done now and have the CT to take with me to my appt on January 12th…..any advice?
Hesitant to go right to Dr. Pauli in Hershey because it is over 4 hours away so if I have to go multiple times it could get rough, and I am not positive I have a hernia so my logic is I should go to a general sports med doc who has worked with people with sports hernias since I have both right side pelvic and hip pain.
Essentially 3 options for my next step:
1. Dr Pauli who would only be looking for a hernia or not (general surgeon)
2. Dr Craig Mauro (orthopedic surgeon) who deals with sports medicine injuries and hip injuries
3. Dr. Brian Zuckerbraun who was recommended to me by my pelvic floor physical therapist who said that three therapists she’s worked with have gone to him for hernias and loved him (general/trauma surgeon)Any opinions would be appreciated!
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Dr. Pauli can get you sorted out. He is competent and you shouldn’t necessarily need to develop a game plan for him. He will do that for you. What can help him, or any other surgeon you see, is to get all imaging on a CD, all reports from imaging, all office notes from all the consultants that have evaluated you.
You likely could have a hernia that isn’t appreciated on exam and/or imaging.
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If you are willing to travel to Maryland, I highly rx dr. Igor Belyanski. He is a hernia specialist, he reads catscans.
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I did describe my pelvic pain above as usually localized about 2/3rds of the way from my hip joint in towards my pelvis (right on the line where the lower abdomen meets the pelvis). The pain seems to come from that spot but radiates throughout my entire pelvis. Occasionally I then also have pretty severe pain at my hip joint and also in my pubic symphosis.
When I couldn’t walk to work one day, I went to the doctor who gave me strong anti-inflammatories which seemed to help, but I’ve sort of given up on taking ibuprofen/ice/heat unless the pain is really bad, but I don’t seem to get much relief unless I have something stronger. I do not usually have any tenderness to touch or pressure either in the pelvis or hip area.
As far as experts you are exactly right that I almost need a team of doctors that can cover the entire hip/pelvic/groin area but that is almost impossible to get except for Dr. William Meyers institute. I was really excited to find him until I found out he does not take insurance so seeing him would probably cost me between $15-20,000 assuming I am a candidate for surgery. I just do not have that kind of money and need to go to a doctor that accepts insurance.
[USER=”1916″]Chaunce1234[/USER], when you say “this is why the specialist can be so valuable for ambiguous cases” what kind of specialist are you referring to?? Can you recommend any other experts on the east coast as I am willing to travel!
[USER=”935″]drtowfigh[/USER], can you advise on which kind of specialist I should focus on for pain in both the pelvis and hip which may or may not be related? I explained above that right now the PCP im seeing wants me to have a CT done of my abdomen/pelivs, but I do not trust him so not sure I should have this done or go to see someone else before doing anymore tests. I do not want to get the CT and then end up going to another doctor who wants to do his own scans.
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quote jlhunter:[USER=”2042″]Jnomesh[/USER], yes osteitis pubis is just a fancy name for inflammation of the pubic symphysis that can be caused by several things so the fact that I have inflammation doesnt help in figuring out what is causing it.
[USER=”1916″]Chaunce1234[/USER] yes I am athletic, 30 years old, there was no traumatic event that caused my symptoms….the only life changing event was that I had a career change going from being a teacher and standing all day to a desk job where i sit most of the day. But my activity/exercise has always been pretty heavy and consistent. Thank you for the extra information, and I will certainly look up Dr. William Meyers in Philly……I did go back to my PCP today who wants me to get an abdominal/pelvic CT but I dont trust this doctor as he took 2 months just to get back to me on bloodwork. Im hoping your suggestion of an MRI/CT above means you agree that might be a good next step.
I really jsut do not know where to start because I have both groin and pelvic pain and I dont know if they are related or two separate conditions. Hence why I went to a PCP trying to think big picture but not sure I can trust a doctors office that is neglectful in their care!
Can you describe your pain? Is it confined to a specific area, or is it diffused along a particular nerve pathway? Does taking ibuprofen or anything help? Does ice or heat help or make it worse? Do you have tenderness to touch or pressure?
I can very much relate to your approach of going to a PCP and imagining having them be the center of the treatment plan. But with that said, and having myself been through this as a fellow patient, a PCP tends to be a generalist and they often have little to no experience with groin and pelvic pain, nor the myriad potential causes. Groin/pelvic/hip pain is often a symptom driven specialty in and of itself, which sometimes encompasses multiple different specialities, which is why patients dealing with this type of pain often get bounced around between PCP, urology or ob/gyn, surgeons, orthopedics, gastroenterologists, pain management, radiologists, neurologists, you name it and a good number of patients on this forum have probably seen them trying to get answers. Sometimes the answer is shockingly simple or obvious. Sometimes the answer is complex, sometimes it’s multiple things. And sometimes there is no answer. The workup can become ridiculous, tiresome, expensive, and confusing.
Ultimately you need to be your own advocate. As [USER=”1176″]Momof4[/USER] story says above, sometimes things are overlooked. This is why the specialist can be so valuable for the ambiguous cases. My personal opinion is if you have unclear groin/pelvic/hip pain and are near an expert or have the capability of traveling to consult with one, then do it. Dr William Meyers is near you, and there are multiple other experts on the east coast as well.
Anyway, good luck and keep us updated on your progress and decision making.
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From someone who has been there and done that, imaging is only as good as the radiologist that is reading it. I know Dr. Towfigh recommends valsava, bear down, with CT and MRI. I have had several imaging tests that were interpreted as negative for hernias, that Dr. Towfigh saw multiple hernias on. I certainly had pelvic and groin pain when my problem first started and ended up having a femoral hernia, missed on imaging. The pain that you mentioned with certain exercises, prolonged standing and for me prolonged sitting and turning in bed, all sound so familiar. Keep looking for the source of your pain. I would go see the doctor that Dr. Towfigh recommended as a next step or at least contact his office. If you do have a hidden hernia, you will probably need to see someone who specializes in hernia repair. Stay positive and keep looking for a solution. Best wishes!
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[USER=”2042″]Jnomesh[/USER], yes osteitis pubis is just a fancy name for inflammation of the pubic symphysis that can be caused by several things so the fact that I have inflammation doesnt help in figuring out what is causing it.
[USER=”1916″]Chaunce1234[/USER] yes I am athletic, 30 years old, there was no traumatic event that caused my symptoms….the only life changing event was that I had a career change going from being a teacher and standing all day to a desk job where i sit most of the day. But my activity/exercise has always been pretty heavy and consistent. Thank you for the extra information, and I will certainly look up Dr. William Meyers in Philly……I did go back to my PCP today who wants me to get an abdominal/pelvic CT but I dont trust this doctor as he took 2 months just to get back to me on bloodwork. Im hoping your suggestion of an MRI/CT above means you agree that might be a good next step.
I really jsut do not know where to start because I have both groin and pelvic pain and I dont know if they are related or two separate conditions. Hence why I went to a PCP trying to think big picture but not sure I can trust a doctors office that is neglectful in their care!
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jlhunter,
Are you athletic or an athlete? Age? Can you describe your pain? Was there a particular onset or event?
Dr William Meyers at Vincera Institute in Philadelphia, PA is well known and runs an entire clinic devoted to groin, pelvis, hip, abdominal, core, orthopedic, et al pathology, and are very skilled at diagnostics as well. They do a lot of work with pro-athletes and are well regarded, at the least it may be worth a consultation given the near proximity to you.
Osteitis pubis is certainly a diagnosis and it’s not to be ignored or discounted. An extended course of anti-inflammatory may help but like everything else you should speak with a doctor knowledgable about the particular problem.
As for groin and pelvic hernias, a relatively common and cheap test that can be diagnostic is a dynamic ultrasound with valsava on the impacted region. An MRI of pelvis and CT might also show other pathology, or a hernia, but hernia is commonly overlooked and can be notoriously difficult to spot especially when radiology interpretation is outsourced to some off-site location without sufficient patient profile, which is perhaps why some doctors read the scans directly themselves even if it is difficult.
Best of luck, keep us updated on your case and progress.
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Did you research osteitis pubis and what the symptoms are?
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