Trying to Get A Hernia Diagnosis

[ldavis]

Trying to Get A Hernia Diagnosis

Andyellen,

I am suffering with pain similar to what you daughter had, and I live less than 2 hours from Philly, so am very interested to know WHICH surgeon (and radiologist) you saw at Jefferson. If you are willing to share those names, I am very anxious to see if I can get an appointment to see them as soon as possible, as my life is ‘on hold’ because of this pain. Thank you so much!

[Helene]

Trying to Get A Hernia Diagnosis

I actually didn’t ask the surgeon about the expected life-time of the hernia repair. It truly never dawned on me to ask that question. Sorry, I can’t help with an answer.

[Geraldine75]

Trying to Get A Hernia Diagnosis

Hello, I had the same thing. I went in for a laparoscopy procedure for my endometriosis and he found that I had bilateral hernias, he then referred me to a surgeon Dr. Cobo to discuss how to repair them. It’s been 9 years and I still have pain on my left side. For some reason only my left side was the one that hurts the most. I can feel something pulling inside when I cough or push too hard. I’m looking for a solution, but I’m afraid to go under all over again and getting the same results. I truly believe this mesh thing they put in me was the worst thing ever because ever since then I feel something in there pulling. I’m also starting to see a bulge so I know it has to do with my hernia. So now I’m wondering, did the doctor say anything to you about how long the repair last? I was naive back then and there wasn’t much information about hernias in females, so I didn’t know all the questions to ask before my procedure.

[Helene]

Trying to Get A Hernia Diagnosis

I truly understand how miserable it is to be in pain. It was actually a very detailed ultrasound that found my daughter’s hernias. Since they only appeared while pushing or bearing down, the ultrasound was actually like a movie filmed in live time that allowed the activity.

For the first time in more than 3 years, my daughter’s abdominal pain is gone and she is returning to normal. She is walking for exercise and will soon return to running again. We actually plan on having her do some Physical Therapy to make sure she that she will be exercising correctly and not do any harm.
I wish you the same success that we had.

[Siris]

Trying to Get A Hernia Diagnosis

Hi Andy,

I am glad your daughter’s pain is resolved. I am also suffering with the same problem from 5 years but non of the imaging shows the reason for pain in my groin and lower abdomen. I am jobless and I think it could be hernia but even an mri did not show it. I cant sir or stand for more than a few minutes without pain and pressure. Is your daughter back to daily activities running and actively working .

[Helene]

Trying to Get A Hernia Diagnosis

Just to put a good follow up to my daughters story.
She is 19 days post bilateral hernia repair and had been in pain for over 3 years. Driving back from the Doctor appointment today, she said to me ” although I am still sore on just one side, I haven’t felt this good in years”

I can’t tell you how good this made me feel yet how sad it made me feel. I am sad that it took so long to make the diagnosis. We searched for the reason for her pain for years with different doctors…including different specialties and many different scans. We didn’t stop searching until we finally found the right right radiologist and the right general surgeon.
Of course, I am soooooooo happy because my daughter is finally basically pain free.

[drtowfigh]

Trying to Get A Hernia Diagnosis

Excellent.
Spread the word about our discussion forum. Glad could be of help.

[Helene]

Trying to Get A Hernia Diagnosis

Well, I must say that you are correct. Today is day 5 post surgery and she has definitely turned the corner. She still has discomfort (as opposed to pain) at the suture site. Occasional moments of pain, but typically strictly discomfort. Naproxen is keeping it very manageable.

It’s amazing that 5 days post hernia repairs that she is heading toward being pain free for the first time in almost 3 years….since she went to college. Hopefully this 2nd semester of junior year and her entire senior year and beyond will be uneventful.

Thank you

[Helene]

Trying to Get A Hernia Diagnosis

Thanks for your response. The bilateral repairs were done laparoscopically using mesh and, according to the surgeon were successful. She is up and moving, although as expected, not comfortable. One side is virtually pain free, while he other is quite painful. She has a script for Naproxen that she used for the pain prior to the long attempt to get a diagnosis.

I do intend to call the surgeon to follow up, as she requested I do. Additionally, we have a follow up appointment next week.

I just didn’t understand why one side is sooo good and the other side is equally not.

I do know, though, that she is absolutely on the path to recovery and being without pain.

Thank you again

[drtowfigh]

Trying to Get A Hernia Diagnosis

1. Narcotics do not help with hernia pain. I recommend ice and naproxen (Aleve) for all my patients.
2. The amount of pain is related to the type of repair, technique, and rarely to the size of the inguinal hernia itself.
What type of repair did she have?
Also, days 2-4 are usually worst, and then every day should be better. Please check with her surgeon, but I recommend that my patients be up and about, walking, cycling active immediately. Getting the groin moving is very helpful in the recovery.

[Helene]

Trying to Get A Hernia Diagnosis

My daughter’s bilateral original hernia repair took place 4 days ago.
Is it typical that she is unbelievably virtually pain free on the side that has been giving her more troubles over the past years and was a larger hernia and the side with a smaller hernia is still giving her a great deal of pain. Due to that side, she is still taking narcotics..although she is taking as little as possible. A nurse explained the possibility to me that the smaller the hernia, potentially the more painful it can be

Tell me what you think about her record.

Thank you

[drtowfigh]

Trying to Get A Hernia Diagnosis

Yes. A letter is the best way to share your experience with that doctor.
So glad to hear of the successful operation.

[Helene]

Trying to Get A Hernia Diagnosis

My daughter just came out of surgery….successful surgery to repair he 2 hernias.

Is it appropriate to leave a message…spoken nicely, for the surgeon that denied their existence because of the CT results even though the Ultrasound made the determination? Do you have any other suggestions how to handle this or should I just let it go?
My intent is as a learning experience for that doctor.

Thank you again for your support and education on our journey to diagnose and repair these hernias, and get my daughter out of pain.

[drtowfigh]

Trying to Get A Hernia Diagnosis

Aha! You are now addressing one of my life goals: raising awareness of hernias among women.
My gut feeling is you are absolutely right. Though, nationally, 7 male groin hernias are repaired for every 1 female hernia, my impression is that many more women have groin hernias than are being diagnosed and treated. It reminds me of the situation of heart disease among women.

In my experience, inguinal hernias are under diagnosed among women because:
1. Many doctors don’t believe women can get inguinal hernias
2. Hernias tend to be smaller in women so they are not easy to find on examination (ie, hidden hernias)
3. Hernia symptoms are different among women than men. Women get pain with their menses, it may radiate to their back or into their vagina or down their leg.
4. Many cannot imagine that a small hernia can cause so much pain.
5. Women’s pelvic anatomy is complicated by presence of ovaries, uterus, possible endometriosis.
6. There is virtually no prospective clinical trial research done on inguinal hernias that includes women.

I am working hard to publish my results and educate the world about women and the concept of hidden hernias. Just this past Monday, I turned in another research publication sharing the specific questions and exam findings that can diagnose a hidden hernia, mostly seen among women. For the first time in its history, with my prodding, the American Hernia Society began a panel discussion on hernias among women last year.

I really do appreciate your posts on this forum, too, as many patients and doctors will also be able to read and learn from it.

[Helene]

Trying to Get A Hernia Diagnosis

I have one other question to which I’m not sure there is a concrete answer.
Based on my experience, I have to believe that there is a significantly large population of women that go undiagnosed or are misdiagnosed.

My daughter’s internist believed her pain was real and kept suggesting tests. Her Gyn agreed it was real but kept ruling out Gyn and saying not me. Over the years, prior to now, ER physicians and general surgeons have said not me and diagnosed the chronic PVC pain.

My question is how is this condition is sooo under diagnosed and sooo misunderstood? How many women are still in pain also with doctors believing their pain has no physical cause?
How can I help raise awareness in order to help others?

[drtowfigh]

Trying to Get A Hernia Diagnosis

Fantastic. Best of luck. And thanks for sharing your story. I hope it can help others

[Helene]

Trying to Get A Hernia Diagnosis

As a follow-up to this discussion, we are now perfectly on the right track. We had an appointment with a General Surgeon today who completely supported the findings on my daughter’s Ultrasound….and wasn’t interested in the fact that the CT Scan didn’t reproduce the results. The doctor’s answer was that the Ultrasound is the answer for a correct diagnosis for this condition.
My daughter’s hernia surgery is scheduled for Thursday and will be done laproscopically.

What I have learned over the past 3 years is that each time that a medical professional told me that my daughter’s pain was chronic pelvic pain, and that she should take pain meds, it was potentially just a lack of understanding how to diagnose the underlying problem and a lack of understanding how hernia symptoms may present in women.

I need to thank you Dr Towfigh, for the information and support that you have made available. I didn’t stop looking for an answer and I didn’t stop advocating for my daughter…..until we got the right answer. I hope that others are able to benefit from your information as we have.

[drtowfigh]

Trying to Get A Hernia Diagnosis

Sounds like a “hidden hernia.” I just presented my results on re value of Ultrasound vs CT vs MRI for hidden hernias and hopefully the journal will accept my manuscript. CTs are typically falsely negative. Ultrasound and MRI are much better options. Also, many films can be incorrectly interpreted anyway.
I would find a surgeon that would provide laparoscopic exploration and hernia repair.
If the ultrasound proves hernias, not sure why a CT scan is necessary.