23cm cyst, no real answers from Doc...

[llsmom08]

Hi, I am 28 years old and about a few weeks ago I went to the urgent care for lower back pain (I couldn't walk or move or crawl).  They did an X ray and said they would get back to me in a week with the results.  The doctor called and said my spine is a little curved, but nothing major that would cause back pain, but that there was also a cyst on on of my ovaries and I should get an ultrasound.  I call my doctor (new insurance, that isn't very good) and they make me an appointment, for one week later.  That appointment was today, but I am left very confused.  He said, according to notes left by the doctor who reviewed my X-Ray that I have a "large" cyst on one of my ovaries.  I asked what "large" meant and he said 23 cm.  Is this really big for a cyst?  He said I would need a CT scan (which I can't get until my referral goes through), then I would need to see a gyno, which I can't do yet becuase insurance chain of command says I have to do CT scan first.  All they did was blood work today (for what, I don't know, they wouldn't tell me).  The doctor didn't tell me much other than if they have to get rid of the ovary, I'd still have another (thanks doc, I kinda figured I had two).  He didn't say surgey, but will that likely happen?  I have a lot of things floating in my mind, words like surgery and even scarier ones like cancer.  I'm trying not to freak out because I have a tendency to do that about health issues.  I have been to the doctor before for things like odd weight gain (over 100 pounds), always tired (I assume because of the weight gain), lower back pain..and nothing ever came of it, blood in my stool/ hard stool (I always figured that was just a result from my c section 5 years prior) can these things be related?  Right after the xray, I was told they saw a lot of poop also.   I should have asked him more questions but I was scared and worried.  Any help or advice would be great and thank you.

[ticked]

I bled for a week after my first surgery but not the second. I think its normal.

I mean I bled a lot after the first one. I had the biggest blood clot of my life come out LOL..It was scary.

[llsmom08]

Hi all! I am now at home resting. I am a little sore and a tad morphined out but an glad it is done. The surgery was laparoscopic and it took about 2 hours to do. I have 3 little incisions, the one in best button being the painful one. It went smoothly my ovaries and everything were left and **** great. They drained 2 litres from the cyst. They left the cyst wall in so they wouldnt havento maybe damage the ovarie. They found multiple small cysts on my right ovary but again thought it safer for the ovary to leave those intact and rx birth control to see if that helps. I am surp ised at how my stomach actually looks smaller, that cyst was really getting in the way. Im glad to be home and I am glad that this is all done with I am just going to rest up and take it easy. thank you all for being there for me and helping me with my questions. I did have one question I called the hospital and they said it was fine but I wanted to double check is it normal to have vaginal bleeding after the laparoscopic cystectomy? It startled mm e when I was in the bathroom. Thank you all again

[ticked]

In my opinion I would find a different Gyno period. To have a cyst that size most doctors want it removed right away. There is usually no delay for a cyst that is over 5cm to be left there.

I live in canada and no ER doctor helped me period when I went to the ER over and over again. However in the US it may be different. I just kept getting told I had constipation and they send me home.

When do they plan on doing the surgery again?? May 24th? I had to wait about 2 months once I went to an Endometriosis specialist.

If it is the 24th it will come before you know it.

[llsmom08]

Im super frustrated with my doctors right now:/  I almost wish I could get the surgery today so that the pain will stop.   I know I would then have a new pain but I would know that it would eventually go away. The nurse say many obgyn said I would have better luck going to the er where they will be performing my surgery and demand to see the on call obgyn because anyone else will just dope me up and send me home:/  would the other er doc suggest sooner surgery if it wasn't necessary?

[ticked]

Sounds like your ovary is attached to the cyst and it could be they are not seeing the entire thing.

I had kissing ovaries stage IV Endo and everything was wrapped around my uterus making it look like I had a bigger cyst than I did. They kept saying thy saw my ovaries when in fact they weren't seeing them at all. No scan saw what was actually found.

[llsmom08]

Well I went to the emergency room again today worst pain I have ever experience in my life.  I went by ambulance.  I went to bed at 10 p.m. with a little bit of discomfort but nothing major.  I woke up at 4 a.m. in extreme pain.  I left the ER at about 1 p.m.while I was there they gave me two doses of morphine and that didn't even make the pain go away. They did another ultrasound and it shows that the cyst has gotten larger it is now 16.6 centimeters.  They also found a new  cyst on my other ovary that is 2.5. centimeters.  They suggested that I get ahold of my OBGYN and try to get my surgery moved up in case it gets larger or ruptures.  My OBGYN is on vacation and they said they would page her and get back to me but they never did.  I am not quite sure what to do or if this makes it anymore serious.  I I am still in a little pain though it is very mild compared to earlier.  they let me look at the ultrasound and it was all black with a cyst was which I was told meant it was all filled fluid which was good.  my left ovary cannot be seen it also they don't know if there's anything wrong with it.  this cyst is bigger than my uterus and bladder.  I have a pre surgery get together scheduled at my house tomorrow..deep pit, baked potatoes, wine...but my family is acting like I'm going to break if I even get up.  I'm super stressed at my doctors never got back to me.  I don't know what to do:(

[ticked]

Hmm Well usually when they drain the cysts they do this so that it doesnt burst inside you during the surgery, and if its big they do it so they don't have to do an open surgery.

I find that odd that they would leave the cyst wall. I have never heard of that but I can ask around on twitter see what the girls there think would be the reason.

I totally understand what you are going through. The pain is unbearable at times and before my first surgery I just wanted it done and for the pain to stop. I pray that the month and a couple of weeks go by quick for you.

[llsmom08]

Also she said somethung abiut draining the cyst but leaving the cyst wall??   That seems odd...did I hear her right?  I'll have another appointment 2 days prior to ask more.  Sometimes the pain in my abdomen is so bad, like now, that may 24 can't come fast enough:(

[ticked]

No I have always heard they do a biopsy regardless. Any kind of cyst they biopsy so as long as you had the talk with her to reassure you which I don't feel like she did 100% I would ask her again the day of to make sure they do. I really can't see why they wouldn't.

I had a small tiny nasal cyst and they biopsied it even though he said it didn't look like anything. I also had two spots biopsied on my last surgery and they weren't cysts. I am pretty sure it is normal procedure during any kind of pelvic surgery where there are cysts

[llsmom08]

I had the pre-op appointment today, all of the cancer screening markers came back negative/normal as well as thyroid, pap, and all of that:)  My appointment is may 24, and they said they will attempt to do a laproscopy and see from there, she said possibly laparotomy.  She sais she wants to try and drain then go from there, I asked if they could still biopsy it and they said they will most likely test the cells...they wouldn't do that surgery and not biopsy anything would they?  I feel really good that all will be well, but I still want them to check it out.

[ticked]

I totally understand. Most likely it will have to be an open surgery but you probably wont know until you wake up unless you discuss it with your surgeon before hand. I would prepare for an open surgery which is about 4-6 recovery. I am really glad your mother is coming to help you that will take a big load off your shoulders. I wish you well and please let me know how it goes at the docs and keep me updated.

[llsmom08]

Thankyou again for replying.  My mom will be able to come and help me:). I just had an appointment with m gyn yesterday and she is sending in a referral for surgery:/  I have another appointment in 2 weeks where we will go over blood test results and talk about the surergy.  She did say because of size they may not be able to do it laproscopically.  I am sort of anxious because of the pain I am in plus the constant fatigue:(  I want this all done:(

[ticked]

Because it isnt a solid tumor that is good news.

An ovarian Cystadenoma is almost always benign so that is a good thing too.

Funny thing when you say they cant find your ovary and that the cyst is smaller than reminds me of what happened to me.

I was first told through U/S I had a 10cm complex cyst and they could see my ovaries but had difficulty and that all was good.

I had my CT scan months later and the cyst was 5.5cm and that it had shrunk and that my ovaries were seen.

In reality my ovaries were wrapped around my uterus and I had an endometrioma (blood filled) cyst within the ovary.

So what does that tell me? No matter what test you do it never 100% accurate.

For you I would be relieved but I would also have it removed. It is a very simple procedure and can be done laparoscopically and recovery time is usually 2-3 weeks.

I was a single mother as well to a 4 yr old at the time of my first surgery and had to have someone take her for at least a week because that was the most painful time. Would you have someone to be able to watch your child for you if this was to happen?

[llsmom08]

Well, I have news now, but I am still confused...They 'thing' is 13 cm...I had the CT done and had to go to the ER, per recommendation from my doctor, for extreme abdominal pain. I had a transvaginal ultrasound done and they could not locate my left ovary, assuming due to the "mass", so thay had to take ultrasound pics of it over by abdomen. The reuslts just said it was 13 cm, probably a cyst, and to go see a gynecologist immediately. I made an appointment with my doctor to get the CT results today. The CT results say the cyst is 13.5X16 cm in axial planes and 16 cm in craniocaudad dimensions. I'm glad it isn't 23 cm. It also says "Internal density is homogeneous without evidence of speta or solid tumors".....That is good right? Also "It is unclear which ovary it arises from because of its midline position. Uterus appears unremarkable and shifted towards right, suggesting that this could be a left ovarian mass.". The impression says :"1. A large cystic midline structure arising from the pelvis extending into the abdomen. This likely represents and ovarian cystadenoma, and may be arising from the left ovary. Please correlate clynically. (Yes, that is the side where it hurts)2. No other intra-abdominal mass, fluid, or adenopathy is seen.3. Pelvic structures are also otherwise unremarkable.I asked the doctor if they could rule out cancer and he said no. He said they might have to do surgey, he wasn't sure. The ER doc said that the radiologist wouldn't commit to saying what it was. I thought that the CT scan could see if it was fluid or not? My abdomen hurts They gave me vicodin which helps the pain, but makes me extremely nauseous. I'm not supposed to do a lot of walking (uh, I'm a single mom with a 5 year old, and I'm a substitute teacher, I do a lot of walking lol)

[LadySuzanne29]

I had a marina coil inside obviously to stop me getting pregnant, but 6 weeks ago I started getting shivers and not feeling well but I thought it was the flu this went on for a week until I got very sick and was rushed into hospital with a tempreture  of 39.5 and a massive infection, an ultrasound was done I was told that the marina coil had tilted down and had got embedded in my uterus. I was admitted & put on 3 kinds of IV antibiotics and the coil was left embedded for 3 days until I told them they have to remove it before I discharge myself and go to a better hospital but was told they needed to do another scan to see the exact location before they removed it or it could cause other complications. The coil was removed
( without a scan beforehand ) and I've had nothing but problems since.  Ive been to A&E sevral times but they just do blood tests and say i have no infection. so I went to see my GP and sent for an ultrasound and I was told that I have quite a big fluid cist on the right side. I have to go back in 6 weeks to get it checked but I seem to be having bowel problems as well ? I couldn't poo properly since removal of the coil but when I eat I am getting pains on the right side of my bowels and really loud noises coming from the place where it hurts. I am getting tingling all round my back and I am itching allover head to toe and inside my anus ? Has anyone else had these symptoms from ovarian cists at all ? I can't take much more and don't know what to do! Plz help me x

[ticked]

A Ct scan see's different things. I will tell you though for me it made no difference they saw two different things but when they cut me open it was not what they saw on either test.

The ultrasound showed a 10cm complex cyst and an endometrioma ovaries were seen, lesions on kidney's.

The CT scan showed a 5cm cyst and said all was fine

When I had the surgery all my insides were wrapped around my uterus that is why they thought it was a complex cyst on the ultrasound but they never saw my ovaries because they were wrapped around my uterus so I don't trust ultrasounds because I think they see what they want to see at times. I think they use the CT scan to confirm what the ultrasound has seen. But dont quote me on that

[llsmom08]

Thankyou guys for replying, my referral has just been approved and my ct scan is scheduled for tomorrow.  I think it's odd they would rather have me do that before an ultrasound but because of my insurance I have to do it in this order, according to the doctor.  What will a ct scan do differently than an ultrasound?
Thank you again.

[ticked]

I meant to say yes it can be related to your C-section as well. You could have major scar tissue as well which could be causing the bowel symptoms as this is what happened to me.

There is nothing to panic about these types of surgeries are done a lot. I have had 2 since 2007. The cyst does need to be removed but if he can save most of that ovary I would ask him too.

Sometimes the other ovary stops working 3 months to a year after the other one is removed. Something to think about.

[Jane39]

Typically a cyst/tumor of that size needs to be removed, immediately, and you really should be seeing a gyn/oncologist, due to the size and other symptoms you are having.

[ticked]

I would go see a gynecologist. 23Cm is big and it has to be removed.

[llsmom08]

if anyone has any insight I would really appreciate it

[llsmom08]

My abdomen hurts and I am freaking myself out:(  the doctor was a good doctor but I left more confused than I wanted to, I should have asked him more questions.   Thankyiu to anyone who answers.