New & Scared, Can't believe it's possible

[KimLvsVB]

Hi,

Two days ago I went to obgyn for boating, pain in my back & lower left stomach, & pain during sex, that has been plaguing me on and off about two months now.  First I though it was just two bad periods in a row.  Prior to that I was easy as pie.  Totally regular, no history of  family obgyn issues, two healty babies, no smoking/drugs = BORING. Two days ago I was told I have a complex cyst on each ovary (one 7cm other 5cm), CA 125 = 132, no colorflow within the ceptic areas on sonogram and no evidence of torsion.  Symptoms seem to get a little worse every day.  I really get tired at night but have a hard time sleeping due to discomfort and urge to use the bathroom.  I'm normally very healthy and active although I am overweight ( I love to eat and play tennis).  Doctor called yesterday and is sending me to gynecologic oncologist Monday (3 days away).  I'm pretty scared because I'm only 43.  Anyone with similar experience?  Outcome?  What do I need to ask the doctor?  I'm looking for a second doctor to go ahead and line up a second opinion.  Any advise would be appreciated.  I'm going to have to call my mother if I have surgery.  I have no idea how to keep her from freaking out.

[krchelle]

I'm sorry that I didn't see your comment to me until now!  I am so glad that all went well for you.  Good luck with your recovery.  Mine has gone well...a little slower than I would like, but well.  I ended up having an ovary removed and an open surgery with a 6 inch incision, so I guess that is to be expected.

Take it easy and let your body heal!

[old_before_my_time]

I am so glad to hear that your surgeon did cystectomies so you could keep your ovaries and their vital, lifelong functions!

I had an ovarian cyst on one ovary and my doctor over-treated me. Even though the frozen section biopsy done while I was under anesthesia came back benign, he proceeded to remove the rest of my female sex organs - the other ovary, both tubes, and my uterus. That was 8 years ago and I am still in shock that this happens to women. For a long time, I assumed I was an anomaly but I have connected with many women who have had healthy organs removed. I now fear going to doctors especially since this was done by a gynecologist I had trusted for 20 years.

[KimLvsVB]

Update:  I had surgery yesterday at 6pm. It was scheduled for 2:30pm but got pushed back.  I got to recovery room at 7:30pm then found out it closed at 9pm so the nurses started trying to get me awake to go home after less than 2 hour recovery time.  Turns out Antastesia has a simmilar effect on me as liqueur.  My body has a hard time processing it so the effects last a longer time on me than others (I'm half chinese).  I ended up staying the night in the hospital because I couldn't wake up enough and I really wanted to throw up. Luckily my mom and husband were there and insisted the nurse let me spend the night.  They wanted to send me home with a prescription but all the pharmacies were closed and I could Hardly move! There was no way I would have pain medicine to last throughout the night because all the pharmacies around here were closed.  I really ended up needing pain medicine too!  I don't know how they could have thought sending me home was a good plan but after my mom and husband got firm, the nurse called the doctor and told them I was in no condition to leave and had to be admitted.  They released me today about noon.  I felt so much better after about 4-5 hours with proper pain management.  I do still feel like I was run over by a truck. Turns out I had 2 large cysts as expected PLUS both ovaries were swollen to the size of grapefruits which we did not know.  I had been feeling bad for about 2 months prior to surgery but it was less than two weeks from discovery to surgery. Doctor removed cysts, drained ovaries, & saved both ovaries and said I'm not allowed to have periods anymore so I will be put on birth control. Overall great outcome. No cancer but we all already knew that in our hearts.  Hope this helps anyone else with similar issues.  

[Sylvie807]

Hi Kim, when is your surgery scheduled for?  Good luck to you.  I too am 43 years old, I have one child (a teenager), and I am scheduled for surgery on 6/23 (went to gyn oncologist).   All started with a routine exam, my gyno felt a cyst, sent me for ultrasound, came back as "possible malignancy on cyst," and that was on 5/23 - so I've been a big old bundle of nerves since then!  So I can definitely sympathize with you.  Also, I am getting married in less than 3 months..........sigh, the "not knowing what is going to happen" scares the S**t out of me!!   The Dr will go in laparascopically first, if there is cancer present then I think he said he will check around the whole area for more cancer........if the cyst is benign then I go home the same day.  All VERY scary.  

[KimLvsVB]

Update:  Thursday (original post) I was told I had apt with gyno/oncologist for Monday.  This weekend was the longest weekend of my life.  You try to stay calm but every terrible thought goes through your head.  I remembered, I don't have life insurance!  I couldn't wait for Monday!!!  Did my research all weekend, had my list of questions and husband in hand.  Ready.  Great experience.  Doctor came to talk to me while I was fully dressed.  Answered all my questions, so I wanted to share my notes in hopes it helps someone else.  Doctor said bilateral cysts are typically endometriosis not cancer. She also told me it looks like the left cyst was attached to the uterus wall which was another sign of endometriosis.  She said that she would have to remove my left ovary when she took the 7cm cysts.  She felt it was unavoidable.  She did think that she could save the right ovary and just remove the 5cm cyst.  Doctor said she does about 500 surgeries PER YEAR!  I asked her from her experience and intuition, what did she really think was going on?  She said that the only way to know 100% was by testing the cyst for cancer during the surgery but that she felt that this was really an endometriosis cyst and not cancer.  She also told me that although my CA125 was high (132) is was not extremely high.  She has had many patients in the 1,000-3,000 range as well.  I was told that in younger people (43) the CA 125 really was all over the place and was mainly used as a baseline to monitor improvement and not a true test of cancer.  Then she had me change clothes to examine me.  After we talked a little more.  I had some time to digest.  I asked if there were any options to surgery like birth control.  She said in my situation, she felt surgery was the best option and that birth control would not shrink the existing cysts.  I was able to express that Osteoporosis was a problem in my family and I wanted her to do everything she could to save the right ovary.  She explained that if it is endosmosis, the chance of the cyst coming back was high but may be manageable.  Also, because I am younger, healthy and have not had other surgeries, she would be comfortable doing another surgery later (hopefully many years later) to remove the right ovary if necessary.  You know how people say the simplest answer is probably true.  After my appointment, I felt her answers were simple and rang true to me.  I had a sense of calm come over me that has stayed with me ever since.  My husband and I talked to our kids Monday night.  We told them about the surgery because I will have some down time.  I asked them if they were worried or scared?  They said no.  They said I seemed so calm so they felt comfortable that everything was going to be fine.  My boys are young teens so we told the truth on their level, answered question and did not lie about possibilities when asked specific questions.  They are fine.  My advice so far... 1. Get to gyno/oncologist ASAP.  They are usually board certified and have seen it all so they can easily answer your questions.  2.  I did not tell any family (except my husband) till after my gyno/oncologist appt.  My reg. gyno was great at figuring out why I was in pain and recognizing my risk for serious problem but she scared the life out of me.  I do believe it was unavoidable though.  Monday gave me the specific info I needed to make decisions, and calm myself.  I could not have been as calm over the weekend talking to my kids or parents about this. I'm so glad I waited.  Last note, as I was leaving the oncologist office I heard another woman break down into pieces. I did not see her but I know she did not get the same news as I did.  The doctor’s office had a private room she was in  and a grief counselor providing aid.  The staff looked heartbroken for her.  Don't mess around with this and good luck to anyone reading.  I'll update after my surgery.  Love to all.

[KimLvsVB]

I'm not a big medical person so bear with me but there are two surgeries that start with L, laparoscopic and other one. Then there's also the open surgery which I assume is like a C-section. My doctor said she was going to try the L surgery that was smaller, three or four small holes. If it turned out to be a little more difficult than she expects, then she'll do the other L surgery that involves a bit of a larger incision. The larger incision is still NOT considered open surgery. I highly recommend having a gyno/ oncologist do the surgery because they do so many more of them per year. Because they do really complicated surgeries, this one will be easy. I believe the cost is about the same and I want to know I have a board certified expert in the field because the side effects really could be life-changing. An interesting note, neither Dr. has ever mentioned that mine are chocolate cysts although the gyno/oncologist feel strongly that these are endometriosis cysts. I assume that means not all endometriosis cysts are chocolate?  Good luck to you.

[Gt0330]

Thanks for sharing.  I also have a 10cm ovarian cyst but I have no pain.  

Did the doctor recommend going on birth control pills for you at all?  To help the cyst shrink?  or did the doc recommend to go straight to surgery?  Was it a larascopic surgery or c-section?  I've done some research and they say chocolate cysts (endometriosis) usually cause things around it to inflame and swell so a larascopic surgery might turn out to be a c-section?  So if it's a c-section I really want to avoid it if i can but not sure if meds would help?

any advise?

[krchelle]

I have a similar history. Fairly healthy then symptoms of bloating, urgency to use the bathroom, discomfort and pain.  I had an 11 cm cyst on my ovary which I had removed almost 3 weeks ago and it turned out to be 14 cm but thankfully benign. Prior to my surgery,  my Dr did a more extensive ultrasound, a ca125 blood test to check for cancer markers and a pap.  They wanted to assess my likelihood of cancer before they operated. Since my chance was low, my gynecologist did the surgery.  If my chances were high, an oncologist would have done it to be safe. They are likely sending you to the oncologist to rule on the side of safety. They will likely do more testing then remove them. Most cysts are benign so try not to worry too much yet, although from experience I know that is tough!

Good luck!

[kwillis9]

Hi, the gyno will have to get a sample, biopsy of the cysts..to determine whether cancer or not..most are not..so just try and take it easy, tell your mother, remain positive and hopefully all will be okay...take care, Karen