Large ovarian cyst

[whiteviolet]

Am post menopausal and have had urinary tract infections and bladder problems for quite a few months, went to the doctor as well as urgent care clinics many times with these problems and also mentioned general pelvic pain (dull pain, intermittent sharp pain, abdominal cramping, bladder spasms) with pelvic pain especially on one side and down into that thigh (upper to mid part of thigh). Had quite a few courses of antibiotics to treat urinary tract infections, which sort of helped but never really cleared all symptoms.  Dr. did pap and pelvic, which were both normal 1 month ago and then referred me to urologist.  Took 1 month to get appt. with urologist scoped the bladder and said she felt something, perhaps uterus, displacing the bladder.  Urologist sent me for pelvic CT scan same day.  CT scan showed large central pelvic cyst posterior to uterus.  Urologist sent me for transvaginal ultrasound next day, which confirmed large cyst which appears to be coming from left ovary and falling behind uterus.  Immediately after ultrasound, Radiologist said the cyst is likely benign, but has nodules, which may just be blood clots. Radiologist also said there is a uterine fibroid.  Urologist called next day and said cyst may be simple or complex, but is complex in appearance.  That is all I know about cyst so far.  Referred me to gynecologist and have appt. coming up in a few days.  Radiologist, urologist, and gynecologist's nurse have all said I will have surgery due to size of cyst.  Pain has increased greatly over the past 2-3 days.  Haven't had blood work or other pre-op tests yet.  Don't know the extent or date of the surgery, but is likely to be laparoscopy with laparotomy incision(s) according to gyne nurse.  Am wondering if anyone has suggestions for pain management til I see gynecologist and also wondering about liklihood of cyst being benign vs. malignant?

[cal300]

I was just wondering if all is well now ? I am 65 post hysterectomy simple cyst turned slightly complex CA 125 reading of 350 > had unexplained  vaginal bleeding a few months ago which GP treated with anti biotics also have urinary infections approx every 2 months and a huge hernia just to left of belly button.  Many other conditions including non alcoholic cirrosis lupus sle fibromyalgia to name a few.  Doctors reluctant to go full on operation because of my problems not least of which is possibility of cutting bowel when going in ! looking at speaking to surgeon re small incision to get biopsy but they said its a bit hit and miss getting one of the "nodules" which showed up on ultrasound - also checked that raised CA 125 is not liver my liver checkted thru CT and is stable..  Any thoughts any similar stories ?

[whiteviolet]

Surgery Update:  My surgery went well on Tuesday, 10/15.  It was about a 2-3 hour procedure, and it started about 3:30 PM on Tuesday afternoon.  It was also about a 2-3 hour recovery period in the recovery room.  I had a 12 cm cysteadenofibroma, which is a cyst or tumor made of tissue and fluid, attached to my ovary and twisting around my ovary 7 times.  The ovary was torced.  It was laying behind my uterus and had displaced my uterus which further displaced my bladder.  I also had fibroids inside my uterus as well as something else called ____ metria (maybe adenometrioma?).  The gynecologist said it was the inside wall of the uterus digging into itself and building up from within.  Everything was benign.  They got an immediate preliminary result of "benign" during the surgery, did some "washing" of everything, and also repaired two hernias that I didn't know I had, after removing everything (uterus, tubes, ovaries, and cervix).  I was in the hospital until today, Fri., 10/15, and came home today about 1:30 PM.  My doctor called me this evening to see how I was doing and to let me know that he received the final pathology reports that everything was absolutely benign.
I ran a low grade fever for the first few days in the hospital, and I also ran very, very low blood pressure (too low).  I had wonderful nurses who took very good care of me and watched all of that carefully.
I am doing well.  I have a small laparocopic incision on my upper abdomen, where they started looking.  Then I have about a 10 - 12 inch vertical incision from above my navel to below the pubic line, which is stapled with many, many petite staples.  I don't know how many, maybe 30.  Those will come out next Wednesday.  My first follow up appt. is in approx. 4 weeks.
I feel much better after surgery than I did before surgery.

[whiteviolet]

I am working now on a few things to get ready for surgery and life after surgery.  I have double checked my insurance information to make sure it's all updated, refilled and picked up prescriptions, updated medical information and other important papers and showed my family where they are, made a call list ready for my family to notify people who have asked me to let them know how I am, taken care of home and work tasks to cover up to the next couple of weeks, and will get my family to work on laundry, grocery shopping, and organizing the house so that things are more within reach.  I don't think I can get my hair cut before surgery because I'm in too much pain to go out.  I'm working on training my puppy not to jump on my lap every time I sit down!  I am scared, but I know this needs to come out as soon as possible.  Everything has sure happened fast.  I can't imagine being off work for 4-6 weeks.

[MarieMichele]

The doctor described my cyst as "fluid filled".  I could feel the fluid jiggling in my abdomen if I held my hand to the area while walking prior to surgery.

I am glad my story was helpful. Your house can become a difficult place to live after surgery, but with some good planning, it's a lot easier.  

[whiteviolet]

MarieMichele,
Thanks for sharing your surgery story.  I read it, and I will work on making some of those preparations in the next few days.  What kind of cyst did you have?

[MarieMichele]

Best wishes on your upcoming surgery. My surgery story is in my profile. I had a 10+ cm  cyst removed with both ovaries, vertical open incision. My story should help you with what to expect and how to prepare your home for the recovery period. You will be in my thoughts for a happy outcome.

[whiteviolet]

Thank you so much for your prayers and reassurance.  I feel like I am in good hands.  It turns out that my gynecologist's mentor was the same gynecologist (fertility specialist) who did my laparoscopy and aspirated a benign luteum cyst on the same ovary for me 21 years ago.  She was an excellent doctor, and so I feel very good about him as well.  I will keep the forum posted.

[hopeshell]

That is wonderful news!  They are usually pretty good about reading the symptoms to guess if you have a malignancy.  But, the fact that you will have a gyn/onc available to step in is also a great safeguard! :)  I agree that your mass is definitely "massive."  My gyn/onc and gyn both indicated that a vertical incision was the safest method for removing large masses.  It sounds like you were very prepared and are in good hands.  I can only imagine that you are very uncomfortable and will feel much better after this surgery!  You'll be in my prayers for a speedy recovery and benign outcome.  Please give us updates when you feel well enough!  

Shelly

[whiteviolet]

Thank you Shelly.  I saw my new gynecologist yesterday.  

He had reviewed all of my records and tests very carefully.  He spent over an hour with me and my husband.   He thinks I have a very large cystadenoma fibroma originating from my left ovary.  He said that it is a complex cyst/tumor probably made up of both fluid and tissue.  He did not think that it is an old luteum cyst that came back or got bigger, he thinks it is completely different.  He said that I have uterine fibroids, some up to 2 1/2 inches large.  The CA 125 blood test came back negative for cancer, and he does not think the cyst is malignant.

He recommended and I agreed to a complete hysterectomy.  He said that due to the size and placement of the cyst he would definitely need to remove the ovary and tube.  He also said that because of the uterine fibroids and the liklihood of future problems with the other ovary, and being 6-7 years post menopausal, removing everything would reduce my risk for future cancer and future surgery.  He said that the possibility is very high that I would need future surgery within the next 10 years.  I read all of the websites that you sent to me earlier.  I asked a lot of questions about hormones, and he said that being this far past menopause, I am not likely to have a lot of hormonal difficulty losing the ovaries.

He scheduled the surgery for a day when the medical center's gyne oncologists will be there and available for consult or help if needed during my surgery.

At first he thought that he could do the surgery laparoscopically, but after he did a pelvic exam, he decided that the cyst is even larger than it measured on the films (which was about 10.5 cm).  He said that it is "massive". He said that it is "impressive in both size and location".

I did all of the pre-op stuff yesterday, and I have a very strict schedule to follow for preparation on Monday, the day before surgery.

At this point, it is my understanding that he plans to do a more open abdominal type of incision to make sure that he can see everything and remove the cyst intact.
It sounds like the surgery will be 2-3 hours, I will be in the hospital for 2-3 nights, and I will be home recovering for about 4-6 weeks after the surgery. My follow up appt. is scheduled for 4 weeks after surgery.

The very good news is that he doesn't feel that it is likely to be cancer.

[hopeshell]

I think you have a great list of questions.  Cancer does often have a characteristic appearance on scans and physical exams.  So, the fact that yours doesn't look "suspicious" is a good thing.  The overall majority of cysts do turn out to be benign.  Since there are gyn/oncs in the dept., that is a good sign.  Some smaller hospitals skip the process with the gyn/onc due to lack of access, but this doesn't sound like that is the case for you.   That said, both my gyn and gyn/onc thought I did not have a malignancy and I did.   It is wonderful they are proceeding quickly so you will not suffer from this pain.  I think that is wise that you are avoiding ibuprofen.   You don't have much longer to wait.  I don't think you will need HRT since you are post-menopausal, but it never hurts to ask.  Good luck with your surgery and keep us posted on how you are doing!

Shelly

[whiteviolet]

My gynecologist's nurse called yesterday to send me to the lab for CA-125 blood test and urinalysis prior to surgery. She said the gynecologist has reviewed my CT scan and ultrasound and said it does not look like cancer.  I understand that there is no way to tell until surgery. She also moved today's 4 PM appt. with gynecologist to 8 AM.  Surgery is tentatively scheduled for Thursday.  

The pain has been intermittently pretty bad over the past 4-5 days, sometimes a dull or moderately sharp continuous pain in the area of the ovary, upper leg, and lower back.  Other times the pain has been much like childbirth labor was for me, all over waves of cramping.  On a scale of 1-10, I would give it between 7-8 at different times. I stayed home this week due to pain, and have been taking it as easy as possible.  Is this a typical level of pain for those of you who have had large ovarian cysts and uterine fibroids?  

I am not taking Ibuprofin due to the upcoming surgery.  Since I'm in between seeing the urologist and being referred to the gynecologist, I wasn't able to be prescribed pain medication, but I will ask about pain management today.

So, for my doctor's appt. today, I have the following questions:

What are the results of the CA-125 test I did yesterday?
Are there other tests needed prior to surgery such as an MRI or PET?
Do my hormone levels need to be checked prior to surgery since I am post menopausal?
Will there be a gyne oncologist on hand to stage cancer if they find cancer during surgery?
Since I have uterine fibroids in addition to the very large ovarian cyst, what is the liklihood of a complete hysterectomy rather than an ovarian cystectomy?
Will my surgery be done laparoscopically or with a larger open abdominal incision? (I know this may depend on the extent of the surgery)
What can I have for pain management until surgery?
What will I have for pain management after surgery?
What is the recovery time following surgery? (I understand that this will depend on the extent of the surgery)
Will I need HRT since I have been post menopausal for 6-7 years? (I've been doing great without up until now)

Any other questions that anyone can think of?

Thank you.

[whiteviolet]

Shelly,
Thank you for the extra information and advice.  I will review the websites.  The gynecologist that I have been referred to is part of a large medical center and there are gyne oncologists within the department.  I have never been diagnosed with endometriosis, and I have had no bleeding of any kind.  The radiologist did mention to me the possibility of it being an endometrial cyst.  I will ask for the CA-125 test, even though I realize it may not be accurate given the presence of the cyst.  I will also ask the gyne if he should refer me to a gyne onc within the department or if he will have one available for consult during the surgery if needed.  In my daughter's case, the gyne who did the surgery did a frozen section of the cyst during the surgery, received the preliminary results that it was benign, and then made the surgical decisions to remove the cyst (also very large) through another larger incision.  We are very blessed.  I have never been on HRT, and had a very easy (knock on wood) time with menopause over the past 6-7 years.  I know it's too large to watch, and I am anxious to get scheduled for surgery.  I hope it can be as soon as possible as I am afraid of it rupturing and/or further damaging other organs.  I am very squished right now, I think.

[hopeshell]

Well, no wonder you are in pain!  Your cyst is quite large and I do hope you get some pain relief and surgery soon.  Since your cyst is that large and it has a possibility of being complex, I think you need to ask to see a gynecologic oncologist for a consult.  I know I have mentioned this in the previous post, but here are some websites that have further information that will hopefully sway you to insist you have a gyn/onc consult:

http://www.wcn.org/articles/treatment/gynecologic_oncologists/overview/

http://oreilly.com/medical/news/ovarian_ten_things.html

http://www.wcn.org/findadoctor/

This doesn't mean I think you have a malignancy.  But, why take a chance with your health since you do have some worrisome signs.  You should also ask for a CA-125 blood test.   There are false positives and false negatives, but it is important that you have a pre-surgery number if you do end up having a malignancy.  It can help with finding recurrence and with treatment selection.  Cysts in post-menopausal women run a greater chance of being malignant than they do in younger women.  But, they can still be benign.  I have a neighbor who had a 8cm complex ovarian mass in her sixties and it turned out to be benign.  But, she did have her surgery performed by a gyn/onc.  How interesting that your daughter just suffered from a large ovarian cyst also.  I am so glad hers was benign!  :)  It is not likely that yours is a follicular cyst since you are post-menopausal.  But, there are a number of benign cysts that could be to blame.  Have you ever been diagnosed with endometriosis?  Have you been on HRT?  Sometimes, these two things are linked to a greater chance of cysts after menopause.  But, unfortunately, the only way to conclusively know if it is benign or malignant is to have it surgically removed.  It is much too large to watch and wait no matter what type of cyst.  Cysts run a greater chance of rupturing for every cm they increase over 5cm.  I think it is a good idea that you stay away from ibuprofen and stick to Tylenol to avoid the bleeding risk since you are facing surgery.  I'll be looking forward to hearing updates from you and hope you feel better!

Shelly

[whiteviolet]

Thank you for the advice and the prayers and good wishes.  I don't know yet if my cyst is simple or complex.  The urologist said it could be either simple or complex, but is complex in appearance.  The radiologist said that the cyst is approximately 10.5 cm x 8 cm x 5 cm, has nodules, and has fallen behind the uterus.  He also said that the ovary is not torced at this time, although I understand that this can change at any time.  I will try heating pads.  I read previously about the need not to take ibuprofin prior to surgery, so I stopped taking that a few days ago.  I tried to talk to the gyne's office about other pain medication when the pain increased on Th and F last week, but since I am in between (being referred from urologist to gynecologist) it seems that neither can prescribe pain medication at this time (weekend).  I will go to the ER if anything worsens dramatically.  The pain seems to be positional.  It seems to increase with whatever position I am in for more than a few minutes (sitting, standing, laying down), making it difficult to find a comfortable position.  My 18 year old daughter had a very large (11 cm x 9 cm x 6 cm) simple follicular cyst on her right ovary last month, which was discovered in the ER and surgically removed 3 days later.  In my daughter's case the CT scan indicated that it was a complex (septated) cyst, and the ultrasound indicated that it was two cysts (one likely benign and one suspicious).  In surgery it turned out to be a very large simple cyst, completely benign, thankfully.  She did lose a small portion of the ovary, but her gyne said that it will function.  She is recovering beautifully and was able to start school on time.  I hope that my case will turn out as well as hers.  I have been reading about various types of ovarian cysts and having trouble figuring out, being post menopausal, what type of cyst I may have.  Is it possible for a woman who has been post menopausal for quite a few years to have a luteum or follicular cyst that formed prior to menopause and then grew slowly in the following years?  Or is it more likely to be one of the other types of cysts?

[hopeshell]

What is the size of your cyst?  Any complex cyst runs a "chance" of being malignant.  But, there is not a way to know for sure without surgical biopsy.  If your cyst is 5cm or greater, then your chance of malignancy is slightly increased.  If you find yourself being told you have a complex mass that is above 5cm, you should ask to be referred to a gynecologic oncologist for consult.  Gyn/oncs have more experience in removing malignancies without spreading them and they can give you complete staging during the same surgery if cancer is found.  This can make a difference in your overall prognosis.  Odds are with you that it is benign, but you need to be on the safe side if you fall into this category.  

I agree with the above post about pain management.  A heating pad or a warm bath used to help me the most...coupled with ibuprofen taken on a regular schedule.  Ibuprofen works best if it is taken every six hours in order to reduce inflammation.  But, if you are facing surgery, you may need to quit taking it prior to your surgery since it increases bleeding risk.   You should call your doctor and ask for suggestions for your particular case.  It is important to let him know you are in a lot of pain.

If you are in great pain, you do need to go to the ER and insist on having treatment.  Pain is your body's way of letting you know something is wrong.   I hope you feel better soon!  Please keep us posted on how you are doing!

Shelly

[mrslovea]

For my self I have found warm pad helps and Ibuprofen or aleve. Because you are post menopausal there is always an increased risk of malignancy, this is just statistically speaking though a lot of the time removal of the mass/cyst is all that is needed. I would say try not to worrie but that is easier said than done. I pray for you and your speedy recovery.