Really abnormal ultrasound...Concerned...

[ChiariRose]

Hi,

I am 32 y/o. In 2009 I had a hysterectomy leaving only my right ovary to try and preserve my bone health. My right ovary was always the one causing me pain, however during the O.R., after the doctor stripped adhesions off of both ovaries, the left ovary visually looked worse. (It was covered in cysts, adhesions, etc.) It didn't take long following surgery, though, for my right ovary to once again begin causing it's severe pain.

I've been telling doctors this for years, most just paying no mind to it. One doctor did a pelvic exam and all he had to say was, "Right ovary was not palpable." Anyways, I finally found an OB/GYN who listened to me. She ordered both a TA and a TV ultrasound. The results came back as saying:

"Right ovary: 5.7 x 3.8 x 5.2... This produce a right ovary volume of 58mL. Complex cystic masses with vascular septations are identified within this enlarged right ovary which appears adherent to the adjacent bladder.

Imaging findings are not reassuring for simple hemmoragic ovarian cysts. Consider pelvic MRI prior to potential surgical reexploration."

I'm pretty understanding of everything as I already have an extensive medical history... but I'd still like to know if anybody has ever had these type of US findings, and if so, what process did they go through next?

It is because of an exploratory laproscopic procedure when I was 18 y/o that I am where I am today. The dr went in looking for endometriosis and ultimately wound up removing most of my body's natural adhesions from my bowel to my abdominal wall....perforating my intestine in the process. He closed me up and sent me home. Two days later I was full of peritonitis and septic. I wound up with a ileostomy/colostomy for almost 4 months, going through numerous surgeries in that period to remove abscesses, etc. A year later my gallbladder had to be removed and I was battling hellacious adhesions, hernias, etc. It was pretty well known by my surgeon when she removed my ostomies that I'd be sterile due to the infections. I spent my time hell for 9 years trying everything I could to avoid a hysterectomy from birth control pills to Depo-Lupron injections but eventually the only way to control the tremendous monthly hemmoraging and the pain was to due the hysterectomy.

While recovering from the ostomies, I had my first stroke. An MRI revealed I have an Arnold Chiari Brain Malformation Type 1. For eight years I was told it was, "the safe kind." In 2008 I was diagnosed with a large septated syrinx from my C1 to my T4 and underwent emergency surgery for it.

In 2011 I was diagnosed with a tumor in my T6 vertebrae. Initially my doctors were just going to "watch it," however since the results of my pelvic US they're now talking about trying to find a neurosurgeon capable, and willing, to get involved in my case.

I suffer from severe sinus tachycardia with an unknown etiology. I have Mitral Valve Prolapse and Tricuspid valve regurgitation.

This all really is just the tip of the iceberg...So, to throw in these pelvic US results has really rocked me backwards. I want to learn the good, bad, and indifferent about this. I see my GYN on Friday to go over "what's next."...all I know is that my exploratory surgery will definitely be an open procedure due to my history of abdominal adhesions...

I have to admit that I'm really concerned about this one....

Sorry to have written a novel, thank you all for reading it though.

God Speed,
ChiariRose

[HVAC]

Let me know how it goes. I am getting treatment now. Ironically the move saved my life. I got in a Clinical Trial I would not have gotten into and it has pushed the Cancer back in 15 places.

Alex

[ChiariRose]

I don't have anyone to go with me. My GYN is one who already speaks in a very, "matter-of-fact" way so I can only imagine what her delivery will be of telling me what's what. I am really sorry that you had to change out in the middle of your chemo. I hope that the center you're at now is working it's best for you. It sounds like your medical history is just as complicated as mine, I truly pray yours begins to look up for you soon.

Less than 2 hrs to appointment time...I'm going to take my dog for a walk and try to clear my head and find my positive/optimism.

God Speed,
Maggie

[HVAC]

It is hard not to worry especially with a complicated medical history. Do you have someone going with you? I went alone and I wish I had had moral support. They matter of factly talked of cutting me up and I frankly was in shock even though I have been through a lot of medical. I wish I had gotten a second opinion as well. I found out there was a much better Cancer Center in the next town. I had to switch in the middle of chemo. I did not do my homework.

Alex

[ChiariRose]

My f/u appt. is less than 24 hours away now. I'm nervous about it, but eager to find out the, "what's next" part of it all. I live in a pretty rural area and am prepared to have to travel approx. 3 hours to get to the nearest gyn oncologist... I'll need to travel anyways even if my regular gyn does the exploratory surgery as our hospital doesn't have an ICU and she feels it best that I be in a place that does just in case. Fingers crossed.

[ChiariRose]

My prayers are certainly with you and I hope for the very best possible.

God Speed.

[old_before_my_time]

It makes sense that a gyn oncologist would have better surgical skills, cancer or not. I believe it is standard to biopsy complex cysts. It should be sent for a frozen section biopsy while you are in the operating room. And then there will be a final pathology that will take several weeks. The frozen section results should dictate the course of the surgery. If it is benign (non-cancerous), you should not need any additional tissue or organs removed. If you do not want your ovary removed if the biopsy is benign, you should write that in on the consent form and have your surgeon sign off on it. I wish I had done that and I would still have my uterus and one or both ovaries.

[HVAC]

I know it is hard. I have MS and ovarian cancer so I have spent a lot of time with doctors. Statiistically you have a less than 2% this Cancer. I am BRCA 1 so that is why I have Cancer.

Alex

[ChiariRose]

Hi,

Thank you for replying.

I've been told that gynecologist oncologists are trained to "do everything" when it comes to abdominal surgery. That not only can they work on my ovary but that if the ovary is adhered to the bladder they're more qualified to try and safely "fix the problem." Or, that if there are mass adhesions elsewhere in the abdomen, or more complex cysts/mass that they're prepared to deal with those issues too.

Givens my medical history, the fact that since I was 16 y/o I've had 10 major abdominal surgeries, and now am dealing with this collection of cysts I can't help but wonder if a GYN Oncologist might be the way to go even for the reexploration surgery whether or not there is a concern for cancer? (Although, I recently learned that my maternal grandma had oat-cell cancer which eventually lead to a battle with both breast cancer and leukeumia. This was in the early '60's and she tried every experimental drug out there. Ultimately she passed away due to the breast cancer.)

I'm trying really hard to stay positive, but I can't help but wonder if there is any relation between the tumor in my spine and the complex cysts on my ovary...

Does anyone know if it is "standard" that the complex cysts be biopsied?

[old_before_my_time]

Wow, you have really been through the wringer. I am sorry for all your suffering. Hopefully, these complex cysts are benign (as most are). If monitoring them is not an option, it would be advantageous to your health (if they are benign) to have just the cysts removed saving your ovary for hormones. Some surgeons are better than others at cutting away the cysts from the ovary. If there is a concern about cancer, it is best to have a gynecologic oncologist do the surgery.