Hi everyone, I've been lurking around here for a couple of weeks and must compliment all of you on the way you share info and care about each other. I'm now brave enough to share my situation and see if any of you have any thoughts you can share with me. I'm 54 years old and several years past menopause. I've had multiple health issues, probably the largest being juvenile rheumatoid arthritis which started at the age of 10 and has caused me to have total replacements for 3 joints (both hips and 1 shoulder). My rather large ovarian cyst was discovered in 2005 while undergoing testing for gallbladder problems (the gallbladder was removed that year due to stones). Since then, I've been followed for the cyst at different intervals, 3 months, 6 months, and then 1 year with ultrasound exams. The size has fluctuated, but has always been over 5 cm. My gyn also did a CA-125 test about 3 years ago which was normal.
So this year I've had a recurrent UTI which has led to more testing and more concern over the cyst. I'm going to quote my MRI from a couple of weeks ago:
EXAM: MRI PELVIS W/O & W/ CONTRAST
CLINICAL INFORMATION: Pelvic pressure, urinary frequency, low back pain.
TECHNICAL INFORMATION: Axial, sagittal and coronal T1, T2, enhanced T1 images of the pelvis were obtained. The patient was injected with 20 cc of Omniscan.
INTERPRETATION: There is a water-signal mass in the pelvis centered slightly to the left of the midline and to the left of the uterus. It measures 6.7 x 6.9 x 8.3 cm. It probably arises from the left ovary. No other ovarian tissue is visible. The uterus and bladder are normal. No pelvic adenopathy or ascites is seen. There is artifact from bilateral total hip arthroplasties.
Okay, so I'm ready to have this thing out. I've seen 2 gyn doctors, neither one can tell me if this is causing my bladder issues (frequency and urgency). The UTI probably contributes to these things, I'm having another culture done next week. Evidently it's an organism called proteus, the problem is it seems to have formed some very small stones and my primary care doc things it won't go away permanently until the stones go away. I was always told in the past it was a simple cyst, I'm thinking the phrase "water signal mass" still indicates this, does anyone know if this is correct?
Question #2: The gyn I'm probably going to go with believes he has about a 90% chance he can remove the cyst and the ovaries (if they're still there) laparoscopically. He will contain the cyst in a bag before draining it and pulling it through the one of the lap incisions. Has anyone had a cyst this size removed this way? Was the whole procedure successful, including keeping the fluid contained in the bag?
Question #3: Can anyone comment on whether they had to do the whole bowel prep thing for this type of surgery?
Question #4: Has anyone had improvement in urinary frequency or urgency problems after cyst removal?
Note: the other Gyn seems pretty unsure about laparoscopic surgery due to my hip replacements and the positioning during surgery. The dr. I've going with feels that since I had no problem in lap gallbladder surgery, this should be fine as well. Not sure if anyone has had the same situation, but please comment if you have any knowledge of this issue.
I know this is long and I apologize, just trying to get all the info out there because I've seen there are a lot of people with good information on this forum. Thanks for any of your input!
I am so sorry u are going through this. I also have a very large cystic mass right above my bladder it has been there since 2009 and has just recently started causing me issues with pain it is now 15 to 17 cm and is getting very uncomfortable so I do know what u are going through with trying to get answers even with the Dr.s. I don't have insurance so my situation is bad. I really wish I had answers for u but I cant even get them for myself. Good luck to you
Hi Steph, sorry to hear about your cyst, that sounds extremely large and has got to cause lots of problems at that size. Best wishes to you, without insurance it's got to be way more difficult to deal with. Thanks for the reply.
I am so sorry to hear about your cyst. I think it is very likely the cause of your urinary symptoms. Those were the same urinary symptoms I had when I had a 6cm ovarian tumor. Mine did turn out to be early staged malignancy. But, both benign and malignant ovarian cysts tend to cause the same problems.
I only know that a water signal is a way they are able to see a mass on a MRI. I do not think that means it necessarily is a simple cyst. But, then again it could be. I think you need to get a clear answer on this from your doctor. If it is complex, you need to ask for a referral to a gynecologic oncologist. Although most ovarian cysts do turn out to be benign, a gyn/onc is essential for any complex mass over 5cm. A CA-125 is not a reliable test for determining if a mass is malignant. It can be normal with malignancy and high with benign conditions.
It is a good sign that it has grown slowly and you don't have other areas of concern on your scan. That increases your chances of it being benign. But, large cysts is postmenopausal women are more likely to be malignant. So, it is important that you have the best possible surgery. The only way to know for sure if a mass is benign or malignant is surgical biopsy. Here are a couple of links for you to browse:
#2: If it is complex or has a chance or complex, you MUST have a laparotomy and it needs to be removed intact. But, I have heard of cysts being drained and removed that way when they are simple. You may want to ask a rheumatologist about how it could possibly be complicated by your hip issues.
#3: If it is complex, you will need a bowel prep for the laparotomy. You won't need it for the laparoscopy. The reason for the prep is because if malignancy is found, the doctor may need to resect the colon. It is pretty standard for the laparotomy. If you find yourself needing this...don't worry. You will get through it. It isn't pleasant, but you will do fine.
#4: All of my urinary problems went away after my tumor was removed! :) I am sure you will see an improvement! That tumor is putting pressure on your bladder.
So, it does sound like you have talked to a couple of doctors and are carefully considering this surgery. If your MRI truly does not indicate anything about the contents of the mass, then you may want a CT. I had both a MRI and CT before my surgery. Sometimes, the contents of the cyst can be see better on one over the other. Usually the radiologist gives an impression of the type of cyst you have. I definitely think you need to know if it is complex or simple before making your decision. Good luck on your surgery. Please keep us posted!
Thanks so much for your very thorough response. I will check out the links you gave me. I did have a CT before the MRI, unfortunately the hip prostheses caused some of the images to not be good and the radiologist who read them suggested the MRI.
Good to know that the surgery helped your urinary symptoms, I appreciate hearing that. That's one of my main motivations for actually looking forward to surgery. Also happy to hear that your malignancy was early stage.
I will definitely do some more questioning when I see my doctor next. He did mention a gynecologic oncologist but wanted to get the reports on all my earlier ultrasounds and the MRI before leaning one way or the other. Based on the info I was able to give him, he did seem to think it was benign, but I definitely need to see if any of the reports he should be getting soon make him question that. Thanks again for your help!
My experience was similar. 8 months of UTIs, antibiotics, dr. appt.'s, a referral to urology, bladder testing, and finally a CT scan that showed a very large ovarian cyst. Follow up consult with a gynecologist and surgery 2 weeks ago. I ended up with a complete hysterectomy because I had other gynecological problems that they discovered, so I had a large, vertical, open incision as they weren't able to do all of that with a smaller incision. However, my daughter had a very large (11 cm) simple ovarian cyst removed through a small laparotomy incision. The gynecologist removed it through a small (4") incision, intact, fluid and all, after placing it in a bag. My daughter did not do bowel prep, because they sped her surgery along immediately after her test results (ultrasound). I had to do bowel prep because it was a very large, complex cyst (12 cm), I was having a hysterectomy because of the other gynecological problems, and my doctor was expecting that it would need to be a large, vertical, open abdominal incision. I had another UTI one week before my surgery, but was treated with another dose of antibiotics prior to surgery, and so far (2 weeks out from surgery), my bladder problems (UTIs, frequency, pressure, flow problems, pain) have not come back. My gynecologist and the urologist were both fairly certain that all of my urinary problems were due to the large cyst displacing the uterus and the bladder. Good luck with everything, and from my perspective and my experience (as well as my daughter's), the sooner the better!
Thanks for sharing this! I'm still kind of on hold now, they did a blood culture on Monday and I was told the results would take 3 or 4 days and I know they can't do the surgery if the organism from the UTI is in the blood until they do IV antibiotics to treat that. I'm a little bit of a nightmare patient because I take Orencia for my rheumatoid arthritis and it depresses your immune system so it's tough to fight an infection. I am looking forward to getting the surgery scheduled and behind me, I really think from what I'm hearing here that the cyst certainly isn't making my life any better! I'm happy to hear your bladder problems have resolved and wish you and your daughter the best and a speedy recovery. Thanks for taking the time to give me this information so soon after your own surgery.
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