[Jen74]

quote Good intentions:

Your doctor probably just read the summary, like many of us do, and the doctor reading the image was only looking for what he’s been trained to look for specific to how your symptoms were reported to him. Lower left pelvic/abdominal pain. The umbilical hernia was just a side observation.

Good luck.

Yes that is what I pretty much figured. I consulted with a specialist who is a hernia surgeon and mentioned the umbilical hernia to him. He said he was not even concerned as he did not even see it or feel it. He said it is very small and not to worry about it. ..

[Jen74]

quote drtowfigh:

Your symptoms are suggestive of inguinal Hernia: radiates to inner thigh, upper thigh, hip, around to lower back, GI symptoms, one-sided, better with ice, worse with menses.

Thank you for the response. I have been going to many doctor’s over the last year and half because of this. I even consulted with a general surgeon who deals with hernia’s here. He said he highly doubted it was a hernia and thought it was more than likely Gynecological since it was happening every single month after my period ended or near ovulation. His claim was that hernia’s do not act like that. However, I will say that my symptoms are getting worse as time goes by ( meaning I am having the pain more often). It just seems to get WAY worse after my period ends and can last up until I ovulate. How do I go about getting a diagnosis? I also would Not feel comfortable with having a repair using any mesh or materials because I also have Mast cell issues and react to Many things.. I do not know of any hernia surgeons here In Chicago who deal with this kind of issue either. I am sure there has to be some doctors that do as I cannot be the only one who cannot do the mesh. I just wish I could get a diagnosis before I undergo surgery of any kind. My Gyne thinks I should have lap surgery to check for Endo and possible hysterectomy since I do have adenomyosis which only gets worse with time as there is no cure. However, if this pain is being caused by a hernia, I would hate to have that major surgery for nothing. I only want to be cut once. I have other health issues which are very complicated. I react to most all drugs so if I need a surgery, it has to be done all at once. The gyne surgeon who would be inspecting for Endo is here in Chicago( He is an Endo specialist who is very trained in knowing how to excise Endo out). I really need to find a Hernia specialist here in this hospital who can attend my surgery to fix any hernia’s that are present at the same time. This is the conundrum I am in. But I would like a diagnosis first to see exactly what I am dealing with. What test is best to check for hidden hernias’s?

[Jen74]

quote Jnomesh:

There is a dr. Steven Haggerty I believe in the Chicago area that people have spoken about. He may be worth investigating as I believe he has done non mesh repairs. There is also dr. Igor Belyanski in Annapolis MD. He removed my defected mesh and will do a non mesh repair upon request. He is a highly skilled Surgeon but I know that even though he will do a non mesh repair it isn’t the same as finding someone that that’s all they basically do. Ie shoikdice Hospital, dr. Tomas in Fl who only does a desarda non mesh repair etc. anyways one step at a time-first see what dr. Towfigh has to say and find out if you even have a hernia in the first place.
ps when I had my mesh removed I had to travel out of state and my out of network benefits ended up paying for everything which I couldn’t believe. The surgery only ended up being something like $1300 which as I mentioned was covered by out of network benefits (they use some crazy calculations to determine coverage amounts), anesthesiology was $2700 but my surgery was 3 1/2 hours so you can figure a 1/3 of that cost for a standard hernia repair length of time-again out of network covers this amount and of course Hospital was covered by which I think would be covered by any insurance-so you may be surprised. The hardest part was talking to my insurance company and getting the codes and dealing with the whole process-to try and get a idea of how much would be covered
best of luck

Thank you for the suggestions and support, I appreciate it very much.

[Jen74]

quote Jnomesh:

Hi Jen. You can get a copy of your MRI and CT scans-not the report but the actual CD of each scan and you can send it to dr. Towfigh. She specializes in reading g these scans and looking for hidden hernias. She can review the scans and then do a online or phone consult. So she can help confirm or rule out certain things.
If you have allergies esleicjkmy to plastic and or other auto immune issues you should stay away from mesh.
yes they can repair hernias the old fashion way but you need to know and understand it is very hard to find these surgeons. You also need to most likely come to grips that to get the best quality care you (at least reagarding hernias) you we going to have to travel and probably pay some costs out of pocket but it is well worth it to have things done right. So paying dr. Towfigh to have a consult in which she will review your scans is a great investment. If it turns out you do have a hernia it will again be a great investment t to travel to the few surgeons that repair these hernias without the use of mesh-get it done right.
Also understand if your local surgeon found a hernia upon your laparoscopic exploration they will 100% use mesh to repair it and yes mesh is made out of plastic and the mesh used for laparoscopic repair is quite large often at least 5” by 7” the size of a salad plate!
as med tuned also understand that even with only laparoscopic exploration a incision is made abover the belly button where the camera is passed through and although the incision isn’t big you are still being cut open and this can lead to a incisional hernia down the line. So don’t take this exploration lightly.
also I have come across a good number of females who went on to have hernias as a result of hysterectomies.
it is always best if you can avoid surgery of any kind and try anything and everything you can to treat or manage the problem I’m other ways.
i would start by having dr. Towfigh see if there is a hernia or not by reviewing your scans.
if there is a hernia I would get it repaired without mesh given your sensitivity to plastic etc.
there is the Shouldice Hospital in Canada that specializes in pure tissue repairs. There are a few Sutton’s in the US including dr. Towfigh that can do a non mesh repair. Don’t rush into anything and be willing to travel and invest in getting the best outcome

Thank you again for the support and advice. Yes, I have an MRI scan I had done last October that I can ask Dr.Towfigh to look at and a recent CT scan as well. Oh believe me, I would not go through surgery without trying everything first. I have tried Many things already. I cannot take any Birth control pills at all ( way to many risks involved for me) so managing my Gyne issues( Adenomyosis) is Very difficult. Yes, you are correct, surgery does pose the risk of developing hernias. That is quite scary for sure. My plan is to start by getting an online or over phone consult with Dr. Towfigh and see if she can look over my MRI and CT scans and see what she ends up seeing. I am already financially strapped due to all my other health issues which I have invested So much money on and still do. I definitely would not mind traveling to see someone in the case that I do need hernia repair, but it would be a Huge undertaking in terms of cost. I would have to come up with traveling expense as well as paying for a hotel which is not even the worst part. The thing is, surgery costs thousands of $$$. My insurance will not pay 100% for out of network doctor’s( meaning doctor’s not located in Illinois). I would have to foot like 60% or more of the cost of a surgery which I am guessing is going to be extremely expensive if they charge anywhere near what the hospitals over here do. Put it this way, I had to have a simple procedure here a couple years ago and they charged over $18,000 for it! I can imagine that any type of surgery will cost way more than that. I guess I will have find out how much everything would be if I do end up needing to travel to see someone. I totally agree it is a great investment, but I have to be able to afford it too. As far as the mesh, So wow, why do they put such a large amount of that stuff inside a person to cover only a small hernia?? I do plan on looking around here in Chicago just to see if there is any surgeons who know how to repair hernia’s the old way without the mesh. There has to be. I know I found one surgeon who has been practicing for over 35 years so I might call their office and just ask if the surgeon does repair hernia’s without the use of mesh. They have to have some alternative for people who are allergic to that stuff right? Thanks again. I have a lot to think about and am going to proceed slowly and with caution..

[Jen74]

quote Good intentions:

Hello Jen74. I know how difficult it is to stay focused and forge your own path when you have problems like this. But most of the bad stories on the forum are from people who stayed within their own local healthcare system and took the first referral and got the mainstream repair. The mainstream repair for hernia repair today is mesh. Large pieces implanted, to be very certain that there will not be a recurrence. That is the teaching and training that the majority of surgeons receive today, apparently.

So, when you ask your surgeon for a non-mesh repair, they will not know how to get it done. They won’t have the training. And they feel confident that their training in how to use mesh will do the job. Chronic pain avoidance is apparently not a subject in today’s medical schools and residency programs.

So, that leaves going outside of your local healthcare system, to find a specialist. I saw in your other post that you didn’t ask Dr. Towfigh’s office about a consultation. It might be worthwhile to go back and do that. I don’t know if there is a charge or not, but even a small cost could be a valuable investment.

Also, be aware that “exploratory” surgery is not just a look-see. It is real surgery, just with no repair performed. They might dissect a larger space during your excision surgery to get a better look at certain areas. The dissection alone is traumatic to the body. So any imaging work that could help you find a cause before surgery is worth pursuing first. And, there are stories of people having mesh implanted, just in case, even though no defect was found, during exploratory surgery. Neurectomies are performed, because they “might” help. If they don’t find anything they will want to do something, while they’re in there.

At the least, maybe you could ask Dr. Towfigh to consult with whichever general surgeon attends so that that surgeon will know what to look for. It would be a shame to wake up and hear that nothing was found and to have the same pain.

I’ve found that sometimes, when dealing with a front office, that you have to be very specific and direct them in what you are trying to achieve. The majority of their daily work is referrals through the “system”. People calling out of the blue are unusual. Sometimes a well-written letter directly to the doctor works better than a phone call. It will reach different people and will probably get directly to the doctor, unlike a phone call or email.

Good luck.

Thank you for the reply and advice. Yes, I have had scans done already ( MRI, CT) which did not find anything really except for the Adenomyosis of the uterus. Oh when I undergo the exploratory surgery, I would be having a hysterectomy at the same time due to the Adenomyosis. Also the surgeon will be looking for Endometriosis. Thank you for filling me in on the mesh and how some surgeons will put it in whether they see something or not. No way am I going to let that happen. Most doctor’s freak out when they see my list of allergies. I am not certain what Mesh is even made out of, but I am sensitive to most chemicals including polyethylene glycol which is a plastic. I am sure mesh is a form of plastic. I definitely am willing to have a phone consult with Dr. Towfigh. She sounds extremely knowledgeable when it comes to hernias. I am just not sure what she will be able to do for me since I am all the way over here in Chicago. It would be great if I could convince a surgeon over here to call her are consult with her, but you know how some doctor’s are, they have Huge ego’s and would not take kindly to that suggestion. So I am guessing most all surgeons use some form of mesh to repair hernias then correct? Honestly what did they do before mesh was invented? Anyhow, I am going to see if I can set up a phone consult with Dr. Towfigh just to see what she says. Thank you for the support and advice.

[Jen74]

quote Momof4:

I was also going to recommend Dr. Paul Szotek in Indianapolis. Not too far from you and it certainly seems like we have to travel to get care from a true hernia specialist. I’ve traveled from VA to MD and ultimately CA but so worth it to get proper care. From another female, your symptoms sound so close to my original symptoms when I had a femoral hernia that went undiagnosed for some time. The radiating pain to the thigh and around hip to lower back and also pain related to your period were all symptoms I had, as well. Most radiologists aren’t looking for an occult hernia or don’t even know how to! If your doctor isn’t reading the images himself then the report may be a false negative. Hoping you can find some answers soon. Hang in there, we all know how frustrating it can be!

Thanks for the reply. Yes, I am not even sure what to do at this point. I met with a surgeon who was a hernia specialist here and he said hernia’s do not usually cause pain in a cyclic fashion the way mine is. However, I have read that they can. I would not mind going to see Dr. Paul Szotec but he is out of network and I would have to pay most of the bill.. That is what is stopping me at this point. I am wondering if I had to have laparoscopic surgery to check for Endometriosis, would a general surgeon be able to spot a hidden hernia when looking inside during a laparoscopy? How was your hernia finally diagnosed?

[Jen74]

quote Chaunce1234:

I’m sorry to hear you’re going though this. Just out of curiosity, how old are you? Are you active and fit, or sedentary and overweight? Was there any initial event or activity that you can recall near to or when the pain first started? Does taking Advil or an NSAID help the pain?

You might try and request a “dynamic ultrasound with valsava” to check for a hernia at the site of pain, probably even better if you get the ultrasound done while you’re actually in pain. Sometimes the radiologist will do it while you’re laying down in addition to while standing up, because standing will use gravity in addition to the valsava (basically bearing down as if you are trying to poop) to try and demonstrate a hernia. The ultrasound is fairly cheap and insurance shouldn’t fight it, and it’s also usually pretty accurate – assuming the radiologist/tech knows how to do the procedure properly anyway.

Two hernia surgeons in the midwest area that may be helpful resources are:

– Dr David Grischkan in Cleveland, Ohio

– Dr Paul Szotek in Indianapolis, Indiana

Not in the midwest but potentially helpful other resources who are familiar with the ‘hidden hernia’ concept include:

– Dr Brian Jacob in NYC, New York

– Dr Bruce Ramshaw in Knoxville, TN

– Dr Jonathan Yunis in Sarasota, FL

– Dr Igor Belyansky in Annapolis MD

You could also choose to have an online consultation with Dr Shirin Towfigh, she is extremely knowledgable about hidden hernias and hernias in women in particular. If you sent her your MRI / CT images on a disc she would likely review them as part of that process.

Good luck and keep us updated on your case.

I am 43 years old and not overweight at all. I have other health issues going on( diagnsed with Interstitial cystitis, IBS, Fibromyalgia, etc..) for the last 15 years though. I can say that before I started having this pain I do not recall hurting myself. I use to take long walks and wondered if that could have caused a hernia ? I saw the doctor in Indianapolis, but unfortunately that would be out of network and would cost me a ton so that is why I am trying to stay in Illinois and in my insurance network. I could ask my doctor about doing an Ultrasound, but trying to find a technician who knows how to do it properly, well I wonder if that will be easy? I could ask Dr. Towfigh if she would be willing to do an online consult. That is one idea. I still would need to find a surgeon if I do have one in my area.

[Jen74]

quote Good intentions:

Hello Jen74. Dr. Towfigh might be your best option at this point. Quickest to contact her office directly I think. She offers online, or remote, consultation.

Here is a link from her Twitter account, below. She is the Administrator of this site. You can also send her a message via the site so that she can see your post.

Good luck.

https://twitter.com/Herniadoc

https://www.herniatalk.com/member/935-drtowfigh

I actually called her office and spoke to the man who answered the phone. He said he did not know of any specialists here in Chicago, but told me to come to this forum and ask if anyone else may know of a specialist here.

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