Large Cyst + Enlarged uterus w/SEVERE adenomyosis

[ssolo91]

I have a huge ovarian/pelvic cyst possibly originating from left ovary, had a mri and now they also found that i have an enlàrged uterus with severe diffuse adenomyosis. When my dr was going over my mri with me she had said something like i had tumors in my uterus? I'm not sure where it says that, or if thats part of adenomyosis? I was reffered to a gyn/onocologist, which has me freaking out, can anyone clarify why that is? Thanks in advance.

[old_before_my_time]

My abdomen was also bloated and I gained some weight although not a lot. Mucinous and serous cystadenomas are considered benign epithelial cysts according to this site http://ovaryresearch.com/ovarian_cysts.htm. One of the authors of the site is ob/gyn Dr. William Parker, author of the book "A Gynecologist's Second Opinion."

My ultrasound and CT scan only identified the cyst as "complex." Imaging cannot always identify the exact type of cyst. Pathology done while one is in the operating room should dictate the course of surgery if there is any risk of cancer. That is why my surgeon should have stopped cutting and sewn me up when the pathology came back negative especially since I had no family history / predisposition for ovarian cancer.

[ssolo91]

I'm glad to hear yours was benign, butnso sorry to hear your healthy organs were removed for no reason. Was your lower abdomen swollen or bloated? I look about 6 months pregnant and just thought i was finally gaining weight. I've been up & down in weight, my appetite will grow then i'll have no appetite at all and feel nauseous. I knew  there was something weird going on inside me, i just kpt ignoring it, but these last few months i wasn't able to ignore it any longer. What is the difference between serous and mucinous? Why do you think the type of mine wasn't listed on my mri results? I've been doing alot of research online  thats basically what i do all day.. Do you know of any good websites with other woman that have similar stories? I just hate all the waiting and such. Thanks and sorry i have alot of questions

[old_before_my_time]

Your cyst is similar in characteristics to what mine was except yours is larger. Mine was a mucinous cystadenoma. My surgeon sent the cyst for frozen section while I was in the operating room and waited for the results. Even though they came back benign, he continued removing organs - both ovaries, my uterus, and tubes. All that should have been removed was the cyst (called a cystectomy) since I did not have cancer. I wish I had realized how often women lose organs unnecessarily. I would have protected myself by revising the consent form and making sure my surgeon signed off on all revisions.

Let us know how your appointment with the oncologist goes. Be sure to make a list of questions so you don't forget anything. It helps to do some research beforehand too.

[ssolo91]

Thank you so much... When i heard the word onocologist i about freaked, my dr assured me that she was not telling me i had cancer. Yes, i have a copy of my mri... IT WAS WITHOUT AND WITH IV CONTRAST- 20ML PROHANCE.

CONCLUSION: 1.Large abdominal/pelvic cyst PROBABLY originating from the left ovary. Cystadenoma is the leading consideration, although carcinoma not definitivly excluded on this exam and would suggest consultation with gynecologic onocology. 2. Enlarged uterus with SEVERE diffuse adenomyosis.

FINDINGS: There is a very large cyst occupying the abdomen and upper pelvis. The cyst measures app. 7cm AP × 20cm transverse × 17cm in length. It contains several generally thin internal septations. There is one area of RATHER uniform thickening of the septations in the central portion of the cyst. This area of thickening measures about 1 × 2cm and demonstrates some mild enhancement. The cyst is otherwise well-defined. There is some minimal free fluid along the inferior margin. 2. The right ovary is visible and appears normal. Left ovary not visualized and may be the origin of the cyst. 3. Note made of an enlarged uterus with severe diffuse adenomyosis.

[old_before_my_time]

Welcome to the community. I am sorry you are going through this!

Sometimes women are referred to gynecologic oncologists even when there is no chance or a low chance of cancer. So do not let this freak you out or cloud your judgment.

Uterine fibroid tumors or adenomyosis can cause an enlarged uterus. But these conditions are common and benign and do not always require treatment especially if you are not having symptoms. Fibroids usually shrink after menopause. Both conditions (fibroids and adenomyosis) can cause heavy and/or irregular bleeding but those symptoms can oftentimes be managed with medications such as birth control pills or (non-hormonal) NSAID's (such as Aleve or Motrin) or prescription Lysteda (tranexamic acid) and supplemental iron if you are deficient.

As far as the ovarian cyst, those are also common and most resolve on their own in 2 or 3 cycles, no treatment needed. Surgical intervention may be necessary if the cyst looks suspicious or gets too large (over 7cm or so) as that can cause ovarian torsion.

Did you get a copy of your MRI report? What type of ovarian cyst is this? If you do not have a family history / predisposition for ovarian cancer, then your lifetime risk is less than 2%.

I had a 9cm complex ovarian cyst for which I was over-treated. I wish I had done more research when my doctor told me I needed surgery and quickly. And I wish I had not allowed his recommendation to see an oncologist to cloud my judgment. Had I done more research and listened to my (barely audible) inner voice, I would have done things very differently and would probably still have all my parts and their lifelong non-reproductive functions.

Please make sure you understand your condition / diagnosis and ALL available treatment options (if any treatment is indeed necessary) along with the risks and adverse effects of each option so you can make an informed decision for your short and long-term health.

Keep us posted on how this progresses.