unknown condition, had hyst, still pain every 2 weeks or so, lasts 2 days

[Stacie K]

I am a F, 33, 5'4", 145 lbs.  I have endometriosis, factor IV Lieden (Coumadin 10 mg daily), and arthritis in arms/wrists, feet, left hip and neck.

I have had random bloating to where I have extensive distension (pregnant looking and my back would go out).  The bloating has gone on for about 4 years now (Took Nexium for over a year), my back started going out 1.5 years ago and typically goes out every two weeks.  I am down for two days when this happens.  

I had a hysterectomy (ovaries and tubes too) 3 months ago.  The doctors thought it was the endometriosis which was causing IBS.  My stools are basically normal.  

I am too young to be this miserable.  I feel like a hypocondriac, but unfortunately everything I have ever had go wrong has really been big (PE..lungs).  I work in Law Enforcement and I can't live with this pain and bloating every two weeks, but I am also sick of seeing specialists and having more and more tests with no results just more surgeries or procedures.  Any chance you have an idea of what could be wrong.  My sister is currently being tested for Lupis (?).  Some things fit and other things don't and there are no family members that have it on either side.

Thanks for reading this.

Stacie

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.

   The bloating you describe may be due to autonomic dysfunction.  The autonomic nervous system (particularly the vagus nerve) innervates the gut and promotes motility.  When there is a drop in autonomic discharges, then the gut slows down and bloating/ discomfort can occur.  This can be tested for with a gastric emptying study.  It is also helpful to eat smaller more frequent meals, if you have this problem.  Other tests for autonomic dysfunction are the QSART (a sweat test) and a skin biopsy.  Another possibility is that you are throwing clots (from your factor V leiden induced hypercoagulable state) to the mesenteric arteries of your gut causing dysfunction.  This can be evaluated for by ultrasound and MRI of the abdomen.  Your story does not sound like Lupus to me, but a screening ANA would be informative.

I hope this has been helpful.

[Annie62]

StacieK,



You might want to do some reading on gastroparesis considering you have had four years of abdominal distention/bloating.  I assume you have reflux problems as well if they put you on Nexium.  I don't know if gastroparesis can only occur intermittently--every two weeks as you mentioned in your case--but possibly it can act up or be worse during certain times due to factors (hormonal, etc.) that I have never heard of.  It can cause significant abdominal bloating, pain, nausea, vomiting, and chronic reflux due to a slowly emptying stomach.  Not everyone vomits from it, though, or has significant nausea.  It is caused primarily by damage to the vagus nerve (neuropathy) and it is diagnosed by doing a gastric emptying scan. If it is severe it can be picked up on EGD.  Lots of times they don't know what the etiology is but it is seen primarily with diabetes (diabetic neuropathy) and also some neurologic diseases and connective tissue diseases as well (scleroderma, lupus, etc.).  There are drugs to help with this-Reglan, erythromycin, domperidone and even Zelnorm.  I use domperidone before meals and at bedtime and it helps some.

[JDHAWK]

Have you tried Zelnorm for your stomach issues?  I have small fiber neuropathy and diabetes and use this to help move things along.  I take 6mg 2X a day.  Best wishes!



Hawk1

[Annie62]

Hawk1,



No, I haven't tried Zelnorm.  I just got dxd with gastroparesis less than three months ago and have only been on the domperidone about  5 or 6 weeks.  The gastroenterologist mentioned Zelnorm at my last appointment and told me to call him to give it a try if I had breakthrough symptoms, so maybe I'll do that.  Glad to hear someone has had luck with this drug; maybe I will too.    Thanks for the suggestion.

[Stacie K]

Thanks for all the responses.  I currently have a script for Zelnorm and a script for Ultram (???) to help with pain and symptoms. I haven't started them yet, but my family doctor was surprised I wasn't on this already...he hadn't been the doctor that diagnosed me.  

I never thought about the clotting possibility.  However, I feel that is probably unlikely because I take 10mg of coumadin per day (however, my protime and INR are still lower and not within the 200-300 levels--intentionally, because of my job hazards and risks of injury induced bleeding).  

I will get the test for the Lupus later next month.  And I will get some testing for the other items you all have noted as well.  Thanks so much for the "best guesses", it really helps me feel like I have some control on the research end since the local doc's can't seem to stop my pain from occuring.

Stacie