At a loss – no diagnosis

Hernia Discussion Forums Hernia Discussion At a loss – no diagnosis

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    • #11236
      Jjpugsley
      Member

      This is sounding pretty familiar. My 16 year old daughter suddenly started having pain in her lower right abdomen area. Since it persisted a week, we went to the Dr. She ordered an ultrasound which showed multiple ovarian cysts. Gyn put her on the pill and said come back in 3 months. 2 months later we had another ultrasound. This showed the cysts were gone, but the pain was still constant. It was not related to her period or to eating or not eating. Exercise and activity intensified it. Next had a CT scan. They couldn’t get the dye injected but she did drink some of the other imaging liquid. Nothing found although both US and CT scan report say a “large amount of stool” and that she’s probably constipated. She isn’t. The CT scan did mention that she might have a small Meckel’s diverticulum. Next did the nuclear med scan for gastric tissue. Negative. Pain now constant and severe. Last step: we just had a diagnostic laparoscopy. Results: everything looks normal!! Didn’t even see the diverticulum. My poor girl just cried when she came out of surgery and was told. Then I found this site. It seems to fit but wouldn’t the surgeon have seen the hernia? Please note that her brother had an inguinal hernia repaired at Sholdice when he was 18. Any help would be greatly appreciated!

    • #15855
      Good intentions
      Participant

      Dr. Towfigh has written quite a bit about “hidden”, or occult, hernias. You can find a lot on this forum, and on the internet if you search those words and her name. Send her a message or contact her office directly.

      Here is some information from her practice’s web site –

      https://www.nytimes.com/2011/05/17/health/17brody.html

      http://www.beverlyhillsherniacenter.com/hernia-education/types-of-hernias/

    • #15879
      Chaunce1234
      Member

      I’m sorry to hear about your daughter.

      Is the pain in the typical region of a groin hernia, in the general inguinal or femoral region?

      Was the ultrasound specifically looking for a hernia of the groin, performed with valsava? Or was it just looking at the general abdomen? These are typically different ultrasounds and do not overlap, so it would be worth confirming.

      Presumably she has been tested for intermittent or chronic appendicitis? Does she have rebound pain upon pressure release?

      Checked for endometriosis? PCOS?

      Do any particular foods make it worse? Have you tried an elimination diet to rule out anything that could be dietary related? Or some other GI issue like IBS or Crohns?

      Sorry, I am not a doctor and am just tossing out a few ideas. Hopefully you’ll find a physician that is a good diagnostician that can help go through a workup.

      In terms of CT / MRI, it may be helpful to have a hernia expert look at them just in case they see anything notable. As “Good Intentions” mentioned, Dr Towfigh will review scans, as will some other physicians that are often mentioned on these forums.

      What region of the country are you located in? Perhaps someone is aware of a regional expert.

      Best of luck, keep us updated on her case and your progress.

    • #16627
      Jjpugsley
      Member

      Update,
      Unable to accept that there was nothing wrong, and with my daughters symptoms not only persisting but increasing, I sent my surgeon Dr Towfigh’ 2014 JAMA article and some newspaper articles on occult hernias. Luckily he had an open mind and called her in for re-examination. He still couldn’t feel anything but admitted, even during the diagnostic laparoscopy, that he was not looking for a hernia. He also said that, with the new information in mind, that her pain was exactly where an inguinal hernia would be. So he went ahead and ordered an MRI!
      Unfortunately we’ve had to wait months because manu of the radiologists “ don’t believe this is an acceptable use of the MRI’s time” so they won’t schedule it. Only 1 hospital did, but I have big fears that they may not follow the procedure that would best show this. Her MRI is today, so all my fingers and toes are crossed. Otherwise, I may have to visit Dr Towfigh in person as she is now not able to consistently attend school in her final year due to the pain.

    • #16676
      Chaunce1234
      Member
      quote Jjpugsley:

      Update,
      Unable to accept that there was nothing wrong, and with my daughters symptoms not only persisting but increasing, I sent my surgeon Dr Towfigh’ 2014 JAMA article and some newspaper articles on occult hernias. Luckily he had an open mind and called her in for re-examination. He still couldn’t feel anything but admitted, even during the diagnostic laparoscopy, that he was not looking for a hernia. He also said that, with the new information in mind, that her pain was exactly where an inguinal hernia would be. So he went ahead and ordered an MRI!
      Unfortunately we’ve had to wait months because manu of the radiologists “ don’t believe this is an acceptable use of the MRI’s time” so they won’t schedule it. Only 1 hospital did, but I have big fears that they may not follow the procedure that would best show this. Her MRI is today, so all my fingers and toes are crossed. Otherwise, I may have to visit Dr Towfigh in person as she is now not able to consistently attend school in her final year due to the pain.

      Any update on your daughters case?

    • #16963
      Jjpugsley
      Member

      We got back the written report on the MRI. The technician or dr (not sure which) said everything looked “normal”. I still feel in my gut ( no pun intended) that this is it. I’m hoping to get someone more familiar with female occult hernias to give a second opinion. I have the MRI on CD. It really does seem to be the best fit: endometriosis, cysts, appendicitis, Meckel’s diverticulitis, etc all ruled out! Will also be seeing Sholdice, but on this forum it has been implied that they won’t do occult hernias.
      My poor daughter is losing all hope and now her family dr has taken her off any pain killers or naproxen as she is worried about long term damage.
      So no diagnosis, pain in the exact same area no meds. Unable to stand or walk for any long periods. Definitely no lifting possible.

    • #18303
      bekahjan
      Participant

      Is there an update on your daughter? I just started reading this feed and your daughter’s symptoms sounds like exactly what I have been going through. Even the pain location is the same. I just ordered a cd of my ct scan to get a second opinion because no one believes at my dr that you can have a hidden hernia. I hope your daughter is doing better. It’s so hard to deal with chronic pain. I am not able to stand or walk for long periods of time also. I am in bed a lot.

    • #18323
      DrBrown
      Participant

      Dear JJpugsley.
      Chronic pain without a diagnosis is a terrible problem.
      Do not hesitate to push your doctor. Endometriosis is often not seen on any imaging tests.
      Small indirect and femoral hernia often do not show on imaging tests.
      Adhesions will be missed on imaging tests.
      Also see a GI doctor.
      If everything is negative, then diagnostic laparoscopy is needed.
      Regards.
      Bill Brown MD

    • #18339
      bekahjan
      Participant

      [USER=”2488″]Jjpugsley[/USER] I hope you were able to get a diagnosis for your daughter. Chronic pain and not knowing what’s wrong is so hard and scary.

      [USER=”2580″]DrBrown[/USER] Would a diagnostic laparoscopy be to check for endometriosis? or for a hernia or both? I am seeing a physical therapist to work on my muscles and if that doesn’t improve things for me I am hoping to make an appointment with you. I live in the Bay area.

      I have been dealing with Chronic pain on my lower right stomach/pelvis non stop for 3 months. Pain meds aren’t even helping. My doctors said my ct scan is fine so there is nothing wrong with me. I had an ultrasound done which ruled out any cysts, but no way of knowing about endometriosis because it cant be seen on imaging tests. My gyno just told me the pain looks to be possibly muscular and then gave me a card to see a psychiatrist and told me to take birth control incase its endo.

      Since the beginning of my pain I have been wondering about an inguinal hernia because of the location and my symptoms seem to match, but of course my doctor doesn’t believe in hidden hernias so he wont even look for it to try and rule it out. He made me feel stupid when I asked about it. I haven’t been able to function since January and have been bedridden. I have felt a lump that disappears near the pain and shows up randomly but cant tell if it is a lipoma or a hernia i’m feeling. It’s so hard when your doctors give up on you and you don’t know where to turn. This hernia talk website has been so very helpful for me! Such a great resource. Thankyou for all the time, answers and knowledge you put into the site.
      ​​​​​​​
      Thanks, Rebekah

    • #18340
      DrBrown
      Participant

      Dear Bekahjan
      Endometriosis is missed on imaging. Laparoscopy is often the only way to make the diagnosis.
      Laparoscopy can also identify if there is a hernia.
      Dr. Cook is an endometriosis expert. You may want to contact him.
      https://www.vitalhealth.com
      Best wishes.
      Bill Brown MD

    • #18341
      bekahjan
      Participant

      [USER=”2580″]DrBrown[/USER] Thanks so much! I will go look at his website. My symptoms don’t seem to line up with endometriosis, but I want to try and rule it out if possible. Thanks for the link. 🙂

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