No cysts but many symtoms

[ohmandy]

I have had many symtoms, swollen stomach, severe pain, bladder spasms, brown dicharge, back pain, stomach pain, flank pain. The past 4 periods I have wanted to go to the hospital because I could not handel the pain. Huge blood clots, changes and pain in bowel movements. I have no energy, I always feel nauseated too. I told 2 OBGYN's and they just say it's endometriosis flairing up. I had an ultrasound and everything came back normal, yet I feel far from normal. One doc said it was also IBS. I literally can feel something moving in my lower ab just above my bladder. The ultrasound just took measurements on my female reproductives. I want to go to an GYNONC, but there is only one in a 75 mile radius and you have to be referred, but the OBGYNs won't referr me. Anybody have any suggestions or ideas. I really could use the help.

[ann703]

after my biopsy i had some bleeding and discharge it all subsided and now i have clear liquid that just goes through everything no matter if i use obs

[Amaris]

I would have to agree, ask for a CA125. Just to be sure. You know your body & what ever is going on you know it's not right! Trust your instinct on this one. My mom just passed away from ovarian cancer & her first diagnosis was diverticulitus (sp?) They were going to treat her for that & be done, but she insisted for further testing because she felt it was wrong & she knew something else was going on with her body. Don't be afraid to question your doctor.

[shellant]

Hi your symptoms sound just like mine. I was diagnosed with adenomyosis which is endometreosis in the lining of the Uterus. The symptoms are hevy clot bleeding during you menstrul cycle, inlarged uterus (not in my case) I have frequency urinating pain in my lower back and groin. These ob's and most gyno dr.'s are completely useless demand a referal or you will report them to the state board!!!!!! that should do it. Good luck

[JulieAM]

Hello--It's true that endometriosis can be very painful but your doctors should be offering you some kind of treatment for it, other than saying it's "just endometriosis".  The CA-125 might not really tell you much because it's commonly elevated in women with endometriosis--generally the more extensive the endometriosis, the higher the CA-125 will be.  The only way to know for sure if endometriosis is causing your pain is surgery, because it usually only shows up on ultrasound if you have endometriosis cysts on your ovaries.  If I were you, I would look for a gynecologist who specializes in endometriosis and has a lot of experience treating it--I think that is the most important factor in determining how successful your treatment will be, especially if you have surgery to remove it.  I have heard that removing severe endometriosis is one of the most difficult surgeries there is to perform, and a lot of doctors just don't have the skills to do it well.

By the way, I have been diagnosed with severe endometriosis and when my CA-125 was checked, it was 360, normal is under 35.  I had a cyst removed from my ovary in November but no pathology was done on it, so I can't say for sure it was a normal endometrial cyst.  But I can attest to how painful this disease is--I hope you can find a doctor who will understand how much you are really suffering and try to help.  I'd make suggestions as to doctors, but I'm still looking for one myself.  I have heard from some patients that the Center for Endometriosis Care is good, I believe it is in Atlanta.  Also there is a site that I believe is called endodocs where patients can recommend doctors  Good luck.  

[SimplyStar]

You could at least ask for a CA125

[Anna-maria74]

They wont refere you to a gyn/onc because there is no visable tumour - why would they. I think your doctor may be right about the endo flaring up, my best friend suffers just in the way you describe. If your not happy with the dx though I would push for further tests.

Anna x