endometrial cysts/scared witless

I'm 48 and in peri. While being treated for uterine polyps/bleeding (I've had them on and off for years), was told I have 3-4 ovarian cysts each on both ovaries and a small one on a kidney. Big news to me. I feel fine w/no pain or symptoms. After miles of ultrasound & tests 2 diff. doctors told me that they LOOK like endometrial cysts: 2 large (3.9 & 4.1cm) and others smaller. No prev. history of endo. After watching for 6 mos., I was told they were not growing (even shrinking a little) and heaved a sigh of relief....we agreed to a watch and wait since my CA125 was normal. Then, at my last office visit, my gyn said, oops! re-read the old stats & they are growing a little, you'll need to have them out (At least the cysts and the most damaged ovary, but of course the surgeon will be standing by to take the whole 9 yards if 'it looks bad'!?!). I'm scheduled for December. I don't want to be one of those women who wake up and find everything gone. Through it all EVERYONE (friends, relatives, people on the street) keeps telling me I've probably got ovarian cancer. "There's no symptoms!" "Make them give you a hysterectomy right away!""By the time they find anything you're dying!" "You're risking your life!" Every magazine has 12 articles @ovarian cancer killing 1000's of women a year w/o symptoms and how propylactic oopherectomy/hysterectomy IMMEDIATELY is the only chance for survival. HELP!! I'm terrified of surgery...even the "easy" kind. I don't want to lose my ovaries and risk dementia and depresson...I have a history of panic attacks and am told they'll get worse. Sex is a big part of my life. My doc says it's "probably just endometriomas, (for now) and totally my decision" but clearly thinks I'm a fool...who needs ovaries & uterus @ 48? Am I crazy & going to die horribly for it? I FEEL FINE!

Hi Soccer480

Awww, You poor thing It is frightening when we don't know what we are dealing with or how to act on the "unknowns" and "what ifs." I think family & friends mean well, but sorry they are scaring the wits out of you in the process.

I've had ovarian pain almost all my life, multiple of the functional cysts that they say not to worry about and multiple hemorrhagic cysts too, but when they found 2 complex ovarian cysts I did worry for the first time. My situation is different though, since I already had a hyst planned when they found them. (I had the hyst for multiple reasons - heavy flooding and chronic pelvic pain being the worst) It was 6-8 weeks of waiting before my hyst & during that time I had to force myself not to to think the complex cysts possibly being cancerous. My doc wouldn't do the CA-125 because he said there are too many things that can elevate it that would just scare me. I wanted to keep one ovary but they removed both because of the severity of the endometriosis they found, and the complex cysts were found to be endometriomas.

A second opinion is recommended before any surgery, so it sounds like you could greatly benefit from getting another opinion or two. Since you aren't having any other problems which are causing you to desire a hysterectomy other than your fear of these being cancer, you might get an opinon from an Oncology/Gyn. You don't have to actually have cancer to have a consult with one. The onc/gyns are the ones who specialize in determining risk and what to do about it.

I understand your fears, but I also understand you not wanting to remove organs that are healthy, and the fears associated with surgery itself.

Most women do just fine hormonally after the removal of a single ovary. Although surgical menopause can be challenging for many, others do fine with it as well. What matters though is what's best for *you*. Keep doing your homework and remember that this is your body and nobody but you and your health care provider can know how best to proceed with your situation.

Whatever you decide, we'll be here for you. Please keep us posted and I'm sending extra s and your way.

Beth

Hi Soccer480,
I'm sorry to hear you're going through all this. I had a similar scare recently with a complex cyst and a dermoid teratoma. I'm 41 and for the first time in my life I was scared about my health.

It didn't help that there were people around me adding to my fears by projecting their own fears. My women friends ran for hills when they learned about my gynecological problems. They thought I had cancer. The scary thing for me was that I had lots of symptoms that were similar to the symptoms of ovarian cancer. Everyday I had to remind myself that it was likely not ovarian cancer.

In situations like this you have to sort of wade through the "noise." By that I mean, take a deep breath and listen to your body. Work with what you know to be true. I agree with Beth that seeking a second opinion is important. Seek a third, fourth, or even a fifth opinion until you're comfortable with the information you've gathered for yourself.

I sought other opinions and I don't regret it. In my case, I was told I needed a TAH/BSO for adhesions, cysts, and a dermoid teratoma. I had several simple cysts and a complex cyst on my left ovary. On my right ovary I had a dermoid teratoma measuring about 6cm. A CT scan and two vaginal US's confirmed this.

Upon meeting the surgeon who eventually did my surgery, I discovered those previous test results were erroneous. The US that day revealed a dermoid measuring only 3cm. There was no complex cyst or simple cysts on my left ovary.

In the end, everyone who flashed the word "cancer" at me was mistaken, and thank goodness I sought out a doctor with advanced surgical skills. I had to go out-of-state to find the right surgeon but it was worth every sleepless night I had along the way. The surgery was complex and long (over 3 hours) but I was able to keep everything except for my tubes.

I would question a surgeon who said "but of course the surgeon will be standing by to take the whole 9 yards if 'it looks bad." What exactly does he mean by that is the question I would be asking him. My surgeon and I agreed that he would not take healthy organs. While all my organs were healthy except for my tubes, my surgery required alot of repair and reconstruction -- 3 hours worth . It "looked bad" in my pelvic region. Most surgeons, I believe, if confronted with the challenges in my pelvic region, would have taken it all out. When I was looking for an alternative to hysterectomy, I looked for a surgeon with advanced skills who was motivated to keep my healthy organs.

I can't give you a in person so I'll give you one here. I hope you find the answers you're looking for soon. Please take time to pamper yourself. Do post back and let us know how you're doing. Sending you sweet dreams -- Laura

I can really understand your fear. I am 49 and began spotting mid-cycle in June; I knew I had fibroids, and suspected that the fibroids were acting up because I was peri-menopausal. Made an appt. for early Sept to get it checked out, and found out that I was not peri-menopausal, but had what appeared to be a complex ovarian cyst consuming my entire left ovary, and it was 5 cm. The fibroids had also grown considerably. The Ca-125 was done immediately, and was normal, even though normal doesn't mean much. Every case and every woman is different. My family history is full of different cancers, although the closest gyne cancer is 2 generations away, but my syster was diagnosed w/ kidney cancer at 46. In my situation, the minute I heard about the complex ovarian cyst, I was determined to have a TAH/BSO, because it was the only way I could be at peace. Contrary to your story, my friends and surgeon tried very hard to convince me that I should not be concerned. However, my surgeon did want me to proceed with a TAH/BSO, because she thought the fibroids were much worse than the ultrasound indicated, and because of the cancers scattered throughout my family. I had the surgery on Oct 11, fortunately, the cyst was not complex and was not cancerous. But, I don't regret having the surgery, because even at just 3 weeks post-op, and while still recovering, I know the decision was right for me.

Get as many opinions as you need to help you with your decision. Surgery should not be entered into lightly, and you need to feel that you have made the correct decision for you.