my wife

[drift476]

has had sever lower abdominal pain for many years but over the past 6 months she has such severe pain that she can not work or manage daily activites.  She was diagnosed with endimitrous, but the Doctor who preformed the laparoscopy refered up to a GI speaicalist.  Keep in mind, my wife has been admitted twice to the hosiptial for 4-5 days and has been to the ER 7 times in the last 3 months.  The GI doctor has prefromed a complete work up.  3 CT's including one of the lower abdomin.  Colon oscopy, Crohns test, and camara pill that she swalloed and took pictures.  All the standard test are coming back negative.  She has never been pregnant, sexually abused or had a termination.  The camara picture came back with pictures of a buldge in her lower abdomin.  Now the doctor wants her to have a double balloon oscopy to find out what the buldge is.  The only problem is only 1 doctor in SO CALIFORNIA can preform this procedure and he is out of Cedar Sinad.  This will take months or maybe even a year to get an appointment. Meanwhile she is seeing a pain doctor, and he has already preformed a nerve block, and prescribed other narcotics, such as Oxicdine and the Phentonal patch. None of this is working.  My question is, since all the basic workup, endemitrious, and work up are all coming back negative, and there is a small buldge in the lower abdoniaml, what is going on?  Could this be some type of Hernia?  Could this cause this much pain that she can not even get out of bed for days at a time? Please keep in mind that ALL the work up is coming back negative. They did a COMPLETE work up by several doctors.  Also the pain is so bad that she can not even get out of bed.  The symptons are sever stabbing pains in her left side lower abdominal area.  There is vomiting from the severe pain.  This will last for hours at a time.  She will sit in the shower for 5-6 hours at a time.  Now the pain doctor presrcibed her gabapentin which is a generic for neurontin.  This helps but does not work.
Since the work ups are negative, it has to be some type or rare problem.  Please advise. Please copy your response tomy e-mail at ***@****

[Kevin Pho, MD]

It is difficult to say without examination.  There clearly has been a comprehensive workup.  Further evaluation can be considered with an MRI of the area, which will give more information than a CT scan.

GI causes can include irritable bowel, inflammatory bowel, or other colonic disease.  If the imaging scans are negative, a colonoscopy can be considered.

If GI disease have been ruled out, pursuing GYN causes can be done - as you are proceeding.  Another opinion at a major academic medical center can be considered.

Followup with your personal physician is essential.

This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.

Kevin, M.D.
kevinmd_

[kimbacat]

sorry to hear your wife is having such bad problems.

has she tried treating the endometriosis?  a couple of months of Synarel or Lupron might get rid of her pain and give her a more definitive diagnosis.  

[Jaybay]

I have been through the endometriosis mill myself.  One thing to bear in mind is that when endo (for short) implants outside of the uterus, it can and usually does, cause inflammation of whatever tissues it's planted on.  Inflammation can cause scar tissue, also known as adhesions, to grow throughout the abdomen.  In my case, the endo-related adhesions strangled many different areas of my bowels and resulted in severe pain, bloating, vomiting, and eventually a hysterectomy and bowel resection.  Like your wife, I am also using the fentanyl patch to treat pain since my adhesions seem to have their own private source of Miracle Grow and aren't going away any time soon.  :-)

Picture your digestive system as basically a tube from your mouth, winding through your gut, and then to the outside.  Adhesions can wrap around that tube and cut off the flow of waste just like a kink in a water hose.  Your wife's symptoms sound very suspiciously like mine.  To make matters worse, because endometriosis and adhesions are soft tissues, they rarely show up on any tests - X-rays, CT scans, ultrasounds, MRIs, you name it.  To "officially" diagnose endometriosis or adhesions requires surgery, usually in the form of a laparascopic procedure instead of the huge abdominal incision.  In many cases, the diagnostic/exploratory surgery turns out to be the cure since the endometriosis implants and any adhesions can be dealt with at the same time.  Once all tests have been run, and if they all come back negative, I strongly suggest you talk to a surgeon about doing an exploratory laparoscopy.  

Of course, I am not a physician - merely a patient who has seen this same problem too many times to count.  Your wife is a lucky woman to have a husband who is such a great advocate in her care - enough to at least go on the Web to research her condition.  My own husband is a Godsend to me - I know what it's like to be so sick you can't even direct your own care, and he is always there to step in for me when I need it.  Keep on looking for answers even though doors seem to keep slamming in your face.  You WILL find a doctor eventually who can help.  Careful hugs to you and your wife,
Jen

[Felix'sMum]

I agree with everything Jen has said! Having read her advice,I hope you already feel better about what your wife is going through...

I would like to add that I had similar symptoms some years ago and was treated for many months for a supposed kidney infection. When it wasn't resolving, though, I eventually had an IVP test (radioactive dye is flushed through the kidneys and is traced on screen) and a large mass in the pelvis/lower abdomen showed up, unrelated to the kidneys.

I had an ultrasound which showed a large (9") ovarian cyst which had become twisted on its "stalk", cutting off its blood supply and causing extreme pain and nausea. To complicate matters it had adhered to the lower bowel so I felt excruciating pain when opening my bowels.

I'm not a doc but given an existing diagnosis of endometriosis, I think it is quite possible your wife has a large, possibly torted or adhered ovarian cyst. Ultrasound will spot that in 5 seconds flat so I think maybe you could mention your concern to the doctors and have them check for that. Good luck, I hope your wife is better soon!
Clare