ehlers danlos syndrome with left side abdomen and left flank pain


I am a 31yr old female with ehlers-danlos syndrome (type 3 with sub type 2)and have been suffering on and off with left side abdomen & left flank pain that radiates to lower back for the last year.

I've had unexplained weight loss and change in bowel habits for the last year as well. when it started it started out as a dull ache and bloated feeling with sharp pains coming and going from time to time, and over time gradually worsened to sharp pains being more frequent.

To date my pain and discomfort is constant. Its hard to say if its in the lower or upper region of the abdomen because i feel it on my whole left side, the most painful area being a little above my belly button and more on the left flank.

I've been to the e.r. several times in the last year and have had blood work, ct scans and xrays done, all seem to be normal. I've also seen a G.I. doctor who took all of 20 mins to tell me it is my muscle and costochondritis, he didn't do any tests or labs etc. and told me to apply capsacin cream 3x daily as needed (hasn't help, i've been applying cream for 3 months now)and get plenty of rest. G.I. doctor also told me that i should get used to this abdomen pain because of my ehlers-danlos syndrome and to expect more issues in my life because of my genetic illness.

I feel i should also mention my mother was diagnosed with stage 4 anal cancer at 54 years old after a year of telling doctors that she felt like she was having gallbladder issues, to which she was told by several doctors that her blood work and labs look normal and given antibiotics for non specific abdominal pains and told to rest.(even now after lots of chemo and several rounds of radiation,cyber knife and clinical trials her blood work still and has never shown anything but normal ranges)Finally an e.r. doctor did an ultrasound (once again her labs were normal) and found that she had stage 4 anal cancer that had metastasized to her liver. I to seem to have normal blood work and normal tests.

My worry is that because of my age and genetic illness I am not being considered for something more serious. I take 5mg of oxycodone 4x daily as needed
for break thru pain and am on 25mg duragesic patches for around the clock pain (doesn't help abdominal pain).

I also take an acid reducer 2x daily and fiber supplement daily.

I've been told that this could be the cause of my pain but my pain started and worsened before being put on medicine.

Any thoughts or ideas would be greatly appreciated.

Thank You.


I am sorry to learn about your Mum's case with anal cancer at 54 years of age, and you with a severe form of Ehlers-Danlos syndrome!

As you know, there are at least 8 distinct forms of Ehlers-Danlos syndrome (EDS). The type you have could lead to spontaneous rupture of medium and large size blood vessles inside you, and bleeding into your bowel, and abdominal pains.

I can see that you are taking a lot of pain killers to combat the ongoing pain. The goodnews is, you should be able to lead a near normal life, as long as these symptoms are well controlled and you keep an eye on how much strain is placed on your body.

As per the issue with unexplained weight loss and change in bowel habit, I completely agree with you. That you suffer with Ehlers-Danlos syndrome (EDS) is not a reason to take any other complaint seriously.

A combination of those symptoms and strong family history of bowel cancer should trigger a thorough testing in you to see why you are losing weight unintentionally. Though colonoscopy has it's risks, especially with Ehlers-Danlos syndrome (EDS), I think you will benefit from a form of endoscopy of your large bowels.

Why not see your Family physician and discuss this with him or her, if you have not done so already?

Blood tests alone is not good screening for bowel cancer.

Whether the "acid reducer" is the cause of your pain is difficult to say, but the surest way of finding out is of course, stopping it for two weeks and see the effect, if any.

Please do your best to get screened for the cause of your unexplained weight loss and change in bowel habit. Even your abdominal pain needing you to be on such an amount of pain killer may or may not be entirely explained by EDS.

Please let us know how you went and we wish you a quick answer to these seemingly unexplainable symptoms and an improved health in general.


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