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Diagnosis experience went not as expected.


So I've been through the medical wringer for a while now. Two yrs ago docs were convinced I had Crohn's disease, but turns out it was only severe SIBO - to which they threw up their arms and admitted ignorance toward the underlying condition. "Maybe IBS?" They said, even though IBS does not impact the function or motility of the organs. They even detected potential inflammation in my ileum during an MRI (ileum was my primary pain point at the time) but because there was no inflammation *inside* my intestines, they ruled the results as erroneous which felt like a slap in the fact, honestly.

I took some antibiotics which did help for a while - even my horrible period pain seemed to have taken a break. But distension and cramps are creeping back every month, so I went to an OBGYN for a second opinion after reading bout Endo and its common misdiagnosis as SIBO/IBS.

Well, she diagnosed me I guess? She said, given my history and symptoms, that it sounded like endometriosis and that she wouldn't hesitate to begin treatment. I start birth control this week (which I have only taken once, briefly, ten years ago). I am appreciative of the fact that she believed me and wanted to take action so quickly. But I am also skeptical. Can I really be diagnosed based only on my word? Shouldn't there be testing or is she saving me the trouble? After so many years of endless tests and "healthy" results, this feels so unnatural and it's taking a lot of time to process. Maybe I am just in disbelief that my brief description of my pain was enough - that it is so much worse than I thought and whatever I thought was "normal" menstruation is so easily recognizable as a very particular disease. I don't know, I'm kind of shocked.

I am also really nervous about taking birth control again, but that's a different post altogether.

How did you get diagnosed with Endo? Did you experience similar states of doubt and shock? What kind of testing did you do, if any?

  1. Hi there! Thanks for sharing your story! I have somewhat similar medical symptoms as you so I think I can give some advice. Technically, no. The only way to medically diagnose someone with endometriosis is through a laparoscopy procedure and visually see the endometrial tissue growing outside of the uterus. I was diagnosed at 15 but had been having symptoms since I was 13 (I got my period when I was 11 and I am 23 now). I also have IBS. I was diagnosed with IBS after endometriosis, however, I have had serious problems with constipation since I was a child, pre-puberty. I do wonder all the time if I actually have IBS or if its the endometriosis BUT since I have had the IBS symptoms since before puberty it makes me think differently. If you are unsettled by the situation and your health care provider believes you do have endometriosis, I would definitely get a confirmation with having the surgical procedure, this way the surgeon is able to cauterize the tissue to provide you with temporary relief before starting the birth control to hopefully rid your period and prevent this growth of your lining. Without the cauterization, symptoms still may persist. I hope this helps and wish you the best of luck!

    1. This sounds so challenging. I do not have endometriosis to my knowledge. But I do have pelvic pain which gets worse during my periods and I am a pelvic floor PT who treats what you describe all day long. I don't like the birth control pill, do to having read many studies on their adverse effects. However, it does help many women with the symptoms you have described. And if endo is suspected, a person would have to be on a birth control pill for several months before noticing a change in symptoms. Furthermore, there are few surgeons with good expertise in excision surgeries for endo. I work in New Jersey and many of my patients fly all over the U.S. to find the right ones for them. If you or your doctors suspect endo, maybe try staying on the birth control for several months to see if the symptoms can be mitigated that way. Because excision surgery will be a major undertaking for you and I want you to feel better in the meantime. I hope this helps!

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