Ovarian Cyst - Endometrioma?

[LLM41]

Hi Girls, I think I need some reassurance.  Saw the ob/gyn today for results of 3rd TVU.  It's a mixed bag of information.  The complex cyst itself has shrunk BUT the solid component has gotten a little bigger (1.5 cm).  The radiologist suggested a 4 wk. follow up but my Dr. is not waiting.  She ordered a second CA-125 (first # was 16) and a CT scan with contrast.  She is scheduling me for removal of my left ovary, tube and a TAH.  She has already told me that she is going to do this at a cancer center with a gyn/oncologist in the room.  If all appears fine - she will leave my right ovary intact so I can go into menopause naturally using just that one ovary.  She told me 2 or 3 times that she does NOT think this is cancer but would  bet money that it's an endometrioma as I have definite endometriosis.  Does this all sound prudent to you?  I am beyond terrified and I feel like crying just thinking about it.  I am not afraid at all of the surgery but of the cancer part.  I have three small children and I feel helpless and vulnerable.  Anyone with endometrioma knowledge care to weight in?  I could use some good information.  I'll take any good news too!!!  Thanks for listening!

[Jodi7347]

Hi, actually I did not have to undergo a bowel prep (thank God!).  However, I just had a laparoscopic surgery and not a laparotomy. I was also going to have my uterus removed as well and they were going to do it either laparoscopically or vaginally (I ended up not having my uterus removed).  Maybe you can't do it that way because your uterus is too enlarged due to the fibroids.

Well, Monday will be here soon enough and soon you can put this behind you.  I will be thinking good thoughts for you and that everything will be fine.  Just make sure you have lots of help lined up because you're going to need it while you're recovering.

Take care,
Jodi

[thegreatrobinski]

ooooops! I wrote to Jodi instead of LLM41, that's who I meant to send this to, sorry.

[thegreatrobinski]

Hi Jodi,
I was thinking about you today. Monday while you are having your surgery, I will be having another TVU. Anyway, yes, the bowell prep is absolutely par for the course. Back 10 years ago, the bowell prep took 3 days! At least now it's easier. Not to throw a monkey wrench into your plans, but sometimes they are able to even remove the uterus laprascopically if there is no evidence of malignancy, even with fibroids! That is what my Dr. wants to do. It sounds gross, but I guess they just cut it up and remove it in small pieces. With my ovary, they will bag it in case it has any malignant cells.

Do you think it's too late to ask about laprascopy? I know it's much easier recuperation than laparotomy, the main thing with that is just to make sure you don't overdo, they'll tell you not to lift stuff or do housework, what a shame!

I'm anxious to hear how you feel, and what they find, it's interesting that your CA-125 went down as well. Today & tomorrow are really probably the hardest part! In addition to the anethesia (where is that spell checker?!) I got an epidural (after you're out) that helped immensely with the pain (there wasn't any!) You've had 3 children, that was probably worse!  Take care!

Sincerely,
Robin

[LLM41]

Hi Jodi, I can't remember if you had a laparoscopy or laparatomy for your surgery.  If the latter - how many nights were you in the hospital?  They are taking my uterus regardless due to fibroids  so I'm having a laparatomy done.  Did any of you have to do the whole "bowel cleanse" thing?  (Sorry to get personal) I was just wondering if that was standard?  Truly, this is starting to take its toll on my psyche.  It just needs to be over with.  Robin - you are hanging tough on this - good for you!  Here's wishing for a speedy end to the weekend so I can get this over with on Monday!  Thanks for all of your amazing support - you gals are great!

[Jodi7347]

Hi Robin,

Yes, I was scared about the word "complex" and that's why I couldn't wait to have it out.  If you're worried about the surgery, don't be.  I have had it done twice now in the last eight months.  The worst part was getting the I.V. and some pain in my shoulders.  The first three days were rough.  I was pretty much in bed, but after about a week to a week and a half, I was pretty much doing my normal routine (with a couple of naps every now and then).  Personally, I think you should have it out and find out once and for all what it is and put this behind you.  Otherwise, it will always be in the back of your mind.  I kept my uterus because there was nothing wrong with it, although I thought about removing it. (I did have a D&C, a hysteroscopy and a thermal ablation procedure along with the surgery).

Again, I don't think you will have too many problems with the surgical menopause since you are already going through it (of course, everyone is different).

I hope this helps you.

Jodi

[thegreatrobinski]

Hi Jodi,

That's great that your cyst was benign, I thought that "complex" was what scared Doctors. I hope that I'm not being stupid by "watching & waiting" but they scared me so bad the first time with "must be considered malignant until proven otherwise" it was an endometrioma with considerable septation or chocolate cyst, so I guess I'm waiting for him to say "cancer" before I let him operate. Also, he says he can do it laproscopically since my endometrial biopsy came back negative. Are you having any difficulty with adhesions? Did they remove your uterus as well? Sorry to be so nosy.........we are similar except that they removed one ovary 10 years ago. This time they want to take the other & the uterus. I agree with you, the bio-hormones sound pretty good.

Best wishes,
Robin

[Jodi7347]

You know, I really don't know what kind of cyst it was other than it was large, complex, with a septum.  The one thing I do know is that it was BENIGN!  I love that word, don't you?  

As for my age, I am 47 years old so it wouldn't have been too much longer before I was in menopause anyway (even though I had regular monthly cycles still).  My ovaries kept producing cyst after cyst so I was done.  I am taking a natural supplement called Harmony and I feel pretty good -- only mild waves of heat so far.  I am really trying to avoid the hormones if I can, but if I can't, I will go with the bio-identical hormones.  

I admire your ability to "watch and wait."  I'm quite the opposite, "Let's yank that thing out of there right now!"  Personally, I think that if you had your other ovary out, I don't think your menopausal symptoms would be too bad since you have already had menopausal symptoms.  I think "surgical menopause" is much harder on women in their 30s.  By the way, I still have my uterus and was able to do the surgery laparoscopically so my recovery time was pretty quick.

Good luck to both of you!

Jodi

[thegreatrobinski]

Hi, thanks for writing back! Interestingly, my surgery was scheduled for the same day, I cancelled it and scheduled another ultrasound for that day instead. I am not having any discomfort, so maybe I'm not as concerned as I should be. I had to smile at your open & honest discussion with the Dr. I am sure he has his reasons for wanting to do the surgery, but he has not conveyed them to me. I really think the ultrasound gives far more information than I have received. I agree with you that waiting is horrible !  I wish you the best on Monday, please let us know how it goes.

Sincerely,
Robin

P. S. to Jodi, did they say what your cyst was? And may I ask how old you are and about surgical menopause?

[Jodi7347]

Hi, I wrote to you earlier back in late September.  I am glad that you are finally having your surgery.  Believe me, the waiting is the hardest part.  

I underwent my surgery three weeks ago to remove a nearly 7 cm complex cyst on my left ovary.  I was extremely anxious as well, especially since I had just been through this same surgery eight months prior to remove my right ovary [I am now in surgical menopause, but so far it's not too bad].  Well, I am happy to report that all went well and everything came back BENIGN!  I feel positive that you will have the same outcome.  

Best of luck to you on Monday.  Please let us know how it goes.

Jodi

[LLM41]

Hi Robin - What a fun name!  My surgery is scheduled for this Monday 11/16 and it can't come soon enough.  I have begun having some discomfort as I've waited for my surgery date.  (I can't help but wonder if it's all in my head)  I will be having a gyn/oncologist on call during the surgery.  My anxiety waxes and wanes as I read & reread the positive postings on this site.  At this time, I try to stay off the Ovarian Cancer site because it causes my anxiety to skyrocket.  Interestingly, though, I read somewhere that sometimes OvCA does not start as a cyst but has an entirely different type of presentation on ultrasound.  I admire your fortitude in waiting for more information before being plunged into surgical menopause.  Your past experience has taught you well and it sounds like you are having open & honest discussion with your physician.  The fact that you have a significantly dropping CA-125 is encouraging! Mine did that as well.  Thanks for your good wishes.  I'll let you know how it goes.  Keep the Faith everyone!

[thegreatrobinski]

Hi, I can sympathize. I'm 54, I guess in menopause, every now and then I have a period? Anyway, 10 years ago I had a 9 cm. cyst on my ovary, they removed my ovary & the tube, it was an endometrioma. Now I have a 6 cm. cyst on my other ovary and my Dr. sent me to a gyn / onc. I have had 3 CA-125's, they were 62, 35 & 28......I had an endometial biopsy & 2 polyps removed, benign. This new Dr. wants to do a hysterectomy but I am almost certain it is another endometioma. I am going to get another ultrasound because unlike you, I am afraid of surgery AND I think I've pretty much gotten through menopause fairly easily, I hate the idea of surgical menopause & HRT. Perhaps you have had the surgery already. May I ask the outcome? Best of luck.

[LLM41]

Thank you so much for your posts.  I even made my husband come in to read them because he is upset and scared for me.  I know how busy we all are in our lives and your taking the time out to chat with a stranger about this is amazing.  I can't thank you enough.  I will keep you posted over the next few weeks.  I'm awaiting the new CA-125 (as unreliable as that thing is!) and have to have a cat scan done sometime next week.  The doctor says she wants every bit of information she can have before walking into the OR.  I guess I should be grateful that I have such thorough medical care.  Thanks again!

[Jodi7347]

Hi, I can imagine how worried you must be.  My mom had a similar ovarian growth and the doctors felt certain it was ovarian cancer.  Her CA-125 levels came back at 100.  Needless to say, the growth turned out to be an endometrioma and was completely BENIGN.  That was 14 years ago and my mom is still here going strong.

I myself am having my left cyst/ovary/tube removed this October 20th due to a complex ovarian cyst.  I already had my right ovary removed so I guess this means instant menopause for me, but I just want that "growth" out of my body.

I know it's hard, but try to think positive.  I think you are doing the right thing by having it removed.  That way you can be free from it once and for all.

Good luck!

Jodi

[Jennyrose]

I have the good news part. I am a single mom and when the TVUS showed a 6 cm cyst on my ovary, I about freaked!! I kept thinking I just had to make it til my son is out of high school.... I have never suspected endometrisis, although I have a strong family history of it, so I figured it was something worse. Plus I had a thick uterine lining and there is a concern of cancer with that also from what I read. I had a laparoscopy and doc found endo everywhere. I did lose one ovary and 2/3 of the other, but it all came back benign. If you have endo, the chances of that being a chocolate cyst are very good. I must say that my right ovary came out normal on 2 ultrasounds and it was very damaged when she got in there. You may want to discuss options as to what you are willing to part with depending on what she sees. If I had given permission beforehand to take my uterus, my doc would have done that due to the endo she found. Take heart; it sounds like your doc is confident and doing the right thing to fix you up!!

Jennyrose