2cm Ovarian cyst and Stage IV Endometriosis

[cat6973]

Hello.  I am a 36 y/o female, never had children, that was recently seen in the ER for right sided lower quadrant abd. pain and R flank pain.  I have had ovarian cysts rupture before, but this pain was not synonymous with the last experience.  So, I went to the ER.  They performed a digital pelvic exam, obtained labs (all which were normal) and a preg test (neg)   as well as a Enhanced CT abd/pelvis.  The CT indicated some free fluid and a distinguishable "black hole" on my right ovary/uterus.  I must preface this with the fact that I have been diagnosed w/ Stage IV endometriosis  and about a week before presenting to the ER, I had a "period" approximately 18 days apart from my last period, that lasted about 5 days and primarily was brown, mucous consistency in appearance.  They measured the cyst at approx. 2cm and instructed me to f/u w/ my OB-GYN.  I did this and had an transvaginal U/S performed today and my Dr. told me that it seems to be a mass, but it could be that the cyst had collapsed and that this "mass" is the walls of the cyst.  There is still free fluid, but I am asymptomatic, good appetite, no unusual bloating, no pain/discomfort, and the size has not changed.  I am concerned if I should be worried b/c I am COMPLETELY anxiety-ridden at this point.  I did give my Dr. a copy of the ER CT scan & she had not yet reviewed it upon seeing my U/S, so I am taking that into account, but it is NOT helping my nerves.  She wants me to f/u w/ another U/S in 6 weeks and I have one scheduled for 2/17.  Can you calm my nerves or give me some insight of what to expect?????  Thank you.

[Annekathryn Goodman, M.D.]

Hi There
great advice from Minnie

I would say this all sounds like endometriosis to me. My personal suggestion would be a laparoscopy to evaluate what is going on.

if you have completed your family and you have symptomatic endometriosis, the best treatment is the complete removal of the uterus, fallopian tubes and ovaries (and sometimes the appendix which sits right next to the right ovary can be involved). There is a small percentage of women with endometriosis who develop a cancer within the endometriosis.
best wishes

[MinnieWM]

Please don't panic.  Even if you have ovca, it sounds like you would be in early stage, and would have a good prognosis.

Did they do a CA-125 test?  If not, insist upon it, although since you are pre-menopausal, your levels are more likely to fluctuate; so a high reading does not necessarily mean that you have ovarian cancer.  Your doctor is probably right, and that the mass is where the cyst has collapsed, and the free fluid is from the collapsing cysts.

That having been said, endometriosis has been associated with clear cell ovarian cancer, a high grade aggressive cancer.  So, you want to stay vigilant, and the f/u ultrasound is essential.  Being asymptomatic is not a good indicator since symptoms often don't appear until the cancer has spread.  A 2cm mass would most likely be early stage, if it is malignant.  In comparison, I had a 10cm mass and some free fluid, and was stage 1c.

Do your follow ups, and if the doctor decides you need surgery, then insist on a gyn/onc who specializes in this type of surgery.  If it is early stage, sometimes they can do fertility sparing surgery.

Finally, if you're not satisfied with the answers or care your doctor is giving you, then get a second opinion from a doctor at a different medical facility.  It's your body, and you're the one who knows best what does, and does not seem quite right.

Keep us updated.