Hi - I'm sorry to hear about your troubles. Dermoid cysts can grow that fast - so can endometriomas and other benign cysts. Cysts of ANY size can definitely disrupt our bodies, the cyst you have is a pretty good size one and it would be unusual if it wasn't disrupting your bowels. I think almost every woman on here has had sometime of urinary or bowel symptoms from their cysts/masses/tumors. It may very well be that your symptoms will disappear after it is removed. I had a small cyst last year that was removed (turned out benign) on my ovary, and have another cyst on my remaining ovary now. I am currently waiting for surgery on Aug. 14th. I can share with you that both times my bowels have been disrupted - although this time I have more urinary symptoms than anything. My cyst is almost identical in size to yours right now -and causing multiple problems. It was those symptoms that prompted my asking for an ultrasound last month - the same symptoms I had felt last year with my cyst. So, the problems they cause are definitely noticeable!
It's hard to say if these lesions in your body are all related, or separate issues. Have you had the CA125 blood test? It's not a definitive test, but can serve as a good baseline for future reference if needed. You might want to request one. As far as surgery recovery goes, the laparascopy usually requires about two weeks off from work (although my Dr. tries to get everyone back to their routine within 3 or 4 days). A laparotomy requires a larger incision and usually 6 weeks off of work or so. A cystectomy means that they will be removing the cyst and leaving the ovary - performed by laparoscopy or laparotomy. An oophorectomy means that they are removing the entire ovary, along with the cyst. This can also be done by laparoscopy or laparotomy. Sometimes, the Dr. might attempt to do a laparoscopy, but need to switch over to a laparotomy if the cyst is too large, or there are too many adhesion, or if the Dr. sees something suspicious. I hope some of this helps - please let me know how you're doing and what you find out. Hang in there!
Robin--I too am dealing with a comlex cyst (on my right ovary) and your info was quite helpful. My cyst is about 8cm and, believe it or not, I didn't even realize it was there. I did have the need to urinate more frequently and now I realize it's because the cyst is pushing against my bladder.
My doctors plan to remove the cyst (along with ovary since the cyst has pretty much taken over the ovary) via laparoscopy, but, as you mentioned, if it's too large or there is something suspicious they will go the laparotomy route. I did have the CA-125 tests and all came back negative (thank goodness!).
Falling apart--I completely understand your concern--I too am very nervous about my cyst since the doctors can never give you a 100% guarantee it's benign until they get in there and remove it. Think positive thoughts (I know--easier said than done!) and I'll be thinking about you on 8/16.
Thank you so very much for you're responses and Robin you have been very helpful. thank you ! I did have a CA-125 test done and it did come back negative ! thank goodness !
I guess I'm letting all of this , get the better of me ,usually I am very strong ! strong as an oxe !
My gyno does not perform surgeries anymore ,almost retired ,so he had sent me to 2 doctors (gyno for my ovary and general surgeon for my breast ) , but he really disturbed me .... In his office we were casually talking and he told me he would never have surgery done in Thunder Bay, he has seen to many people come out covered in a white sheet !!!! i thought "oh my god , and you just sent me to 2 surgeons and i'm already seeing a heart specialist as well !!!!!!!!!! He has freaked me right out !!!!!!!!!!! my apologies ,i'm just venting and so scared . I don't understand why he would tell me something so awful ,I haven't been able to sleep very well ,since then.
Anyways ,Robin , best of luck with you're surgery on the 14th , you will be in my prayers and best of luck to you as well jms . trying to think positive and ty so much for you're support . sheri .
Well, it sounds like we're all in the same (or kind of similar) boat! Wish I could wave a magic wand for all of us................
Falling apart - I'm glad the info helped, if even a little. Good news about your CA 125 test. It isn't an absolute, but it definitely is a good indication. Your mentioned that your CAT scan will be done on the 9th - only a few more days away. That should really provide some more answers for you. You do sound like a really strong person - but that doesn't mean you should HAVE to be strong to deal with some tactless doctors or mediocre care. I'm so sorry about the comments your Dr. made. On one hand, it was incredibly awful ( I assume your surgery is scheduled at Thunder Bay), but on the other hand, can you take this information and use it to change your surgery plans? Can you request that your surgery be done somewhere else? Usually, doctors are licensed to operate in more than one facility. I hope they are keeping your heart specialist informed of all of this. Have you seen that Dr. lately? It's a pain when you feel you have to be in charge (when it's the last thing you feel like doing, and navigating the insurance/Dr field can be challenging), but we only have one body to take care of. The doctors have many to choose from! We only have ourselves. Be your own best friend, you are worth every second of frustrating phone calls, and who cares if you irritate a few doctors? If you don't like the way things are going, or feel uncomfortable about where the surgery is being performed - take a deep breath and speak out. You are so worth it, and have a right to the best care that's out there. You also need it because of your other health issues. Sometimes there really aren't any definitive answers until surgery, but you deserve any test that will yield more info, especially when surgery will be harder on you than most. I'll be praying for you, please consider talking to your doctor again about his comments regarding Thunder Bay. Keep me posted - I'll be anxious to find out the results of your CAT scan and the whole Thunder Bay scenario.
JMS 99 - Hi - so glad some of the info was helpful. I try to only post info that is consistently posted on reputable web sites. There is a lot of other info out there that seems to be contraindicated on different web pages. Some stuff seems to be kind of standard, though. When is your surgery going to be? Will they do another ultrasound or other test before surgery? I'm going to have an ultrasound done this Wednesday, I'm a little anxious to see if this cyst has shrunk, grown, or stayed the same. My stomach is definitely poufier - ? - poofier? poof y er? - BIGGER than it was a few weeks ago! :-) Last night, for the first time, I could feel a heaviness in my left side when I was laying on it. I rolled over and the weight shifted to the right. It's either growing or has burst and created fluid. Either scenario sounds incredibly unappealing. It's a very strange sensation, one I didn't have last time. Have you ever experienced this? Anyway, please let me know when your surgery is. I'll send prayers and best wishes your way!
We sure are in the same boat (or close to it!). Wish we could all be there for each other when we go for our test (at least we're all thinking about and praying for each other, which is a HUGE help).
I go for my follow up ultrasound on Thursday, just one day after you! They would have already removed my cyst, but I was recovering from c-diff (a nasty bacterial infection of the colon) and then ended up getting a blood clot in my leg from the c-diff colitis (it was bad!) and being bed ridden in the hospital for a week. The doctors have me on a blood thinner, which is why we had to delay surgery. I think my cyst has probably stayed about the same or grown a bit. It's hard for me to say whether or not I'm truly experiencing any new symptoms since I was diagnosed. I do feel a heaviness in my right side where the cyst is, but I may have had this before I even knew it was there and now I'm much more in tune to it--the mind is really powerful--sometimes I wonder if I feel things that aren't even there. :)
Thankfully, no pain and my stomach doesn't seem any more poofier than before. Although, when I lay flat I do notice a slight rise on the right side and I know it's the cyst. From anything I've heard or read I think if your cyst had burst you'd definitely know it. My understanding is that it's pretty painful. My guess is that you, too, are more in tune to what's happening with your body and you feel the pressure of the cyst pressing on other organs.
I'll have a better idea of surgery timing after Thursday. My guess is that if the cyst is staying the same, my doctors will check it again in another month--by that time I should be just about off the blood thinner and then we can schedule surgery. Now, if it's really gotten larger or something else shows up (God--I hope not!), we'll do it sooner and Ill have to go off the blood thinner in advance of surgery (and then go back on afterwards). As much as I'm scared to have surgery (only had my tonsils out as a kid), I can't wait until it's out and I know for sure what it is. My husband and I have a funny little code---we figure that the doctors will speak to him before I even wake up from surgery to let him know what they found. If it's not cancer he's going to say "Five Stars!" as it a five star hotel or a five star movie. I know it's silly, but we had planned to go on a belated honeymoon (we were married last August) on 8/16 and were staying at a Four Seasons in Grand Cayman. We most likely will not be able to make the trip depending on what happens on Thursday (even if we could no "hanky panky" because of the cyst and no alcohol for me because of the blood thinner), but my husband keeps telling me that regardless we're going to do a five star vacation as soon as we can. :)
So, I hope you and Sheri both have Five Star reports on your next tests!!!! Oh, and Sheri--ignore what that doctor said--sometimes these doctors have zero bedside manner!!
Hi Robin, It sounds like you are hanging in there. I'm sorry I didn't get back to you sooner. Is your US tomorrow? I do think your reaction of stress and detachment are exactly what I would be doing. ...Looking up everything, but knowing enough to just get busy in life preparing. By now I'd be getting myself even more worked up, even over just the surgery : ). I'm sorry you have to go through surgery again. Hopefully it will go smoothly and put all this to rest!
I had my checkup US yesterday. No problems. No cysts. The missing ovary shows up as missing. It was more painful than I remembered, guess there's scare tissue. It was nice to know in advance who's the most highly recommended radiologist (a retired gyno) and to ask for him. Strange, I couldn't get enough liquid into me. There must be more room down there since the cyst was removed. I had all these mild symptoms from the cyst that I didn't attribute to it until they were gone, like urinary frequency, and sharp pains.
Tough week though. My dad had his 12th or 13th surgical procedure for pancreatitis. (Guess I should learn how to spell that word.) He had a growth removed a 1 1/2 year ago from the entrance to the duct and it's triggered scar tissue which closes the opening and triggers the pancreatisis. He's showing signs of diabetes from it now, and the procedure to fix it is to add a temporary stent - that then tends to irritate, cause scar tissue, and trigger attacks. Like others, they only went to one specialist in all this and insisted he was top in his field. Finally, they are planning to see various other centers around the country. (I've been pushing from the beginning, but now, I'm not making dad any more of his favorite chocolate covered almonds, until he does!) Hopefully someone will have an idea. Doc wanted to give him drugs to increase digestion enzymes and reduce the pain and write him off as the attacks destroyed his pancreas. My dad called and put himself on the surgery list himself instead! That did get the doctor's attention. So I guess all the difficult stories here happen in other areas of medicine too. At least the growth was caught before it turned cancerous and we were told it always does within 6-7 years. First local doctor wanted to wait & biopsy it routinely - until when? I'm just whining here, but this is nothing compared to what so many people are here are going through - but hope it's okay to bend your ear...? Then my mom's friend was diagnosed stage III ovca. It's someone I've met who's very sweet. I'll send her to the website when she's up and about.
So, for want of another idea, I bought a digital voice recorder and had it delivered to them. I used one for my appointments and it was very helpful afterward to keep everything straight. It was amazing how well it picked everything up. My dad wasn't impressed with his present at the moment, but my mom loves it. She has thought of all sorts of other uses, and is very happy with her new present that she's taken over.
I'm glad I don't have to go through this again, at least not at the moment. I've been thinking of you!! Hope you aren't too uncomfortable and are getting ready to go. You had some good ideas above...isn't experience a nice thing (sort of?). Let me know how the US goes...!
Sheri & JMS, I wish you weren't going through such difficult times. I hope you find/get the solutions what you need very soon!!!! Sheri having your doctor complain about your hospital adds so much stress. If you can change, then no reason not to. However, he was probably just venting, and was reacting to some specific problem he'd encountered that day. It was unprofessional. Do you think you'd want to call him and ask him if you should change hospitals? He might then clarify his remark that way and help you gauge how seriously to take it. He referred you to people he trusted so it's very unlikely that there's really a problem. Maybe it is time for him to retire : ). I saw reference to a gyno doing the surgery. If there is any ovca risk at all, please make sure a gyno-oncol is on call to come in if the frozen section during the surgery is suspicious. It makes a big difference. JMS the risk is so low especially with a low CA-125 - so I hope you can hang in there and relax : ).
Best to you all.
Thank you for your well wishes. Sorry to hear that your dad is having problems with his pancreas. Thankfully they've caught it in time. My mother-in-law was diagnosed a year ago this month with pancreatic cancer. Unfortunately, even though the tumor is contained to her pancreas, they were unable to surgically remove it because of the location of it. She's been very lucky though--doing very well a year later and according to the statistics, she's beat the odds. Enzymes do wonders--she was having a lot of trouble with her bowel movements until her doctor put her on enzymes. Now it's like she's a whole different person--feeling great. I hope they have the same impact for your dad.
I found your comment that you had a lot of symptoms attributed to your cyst that you didn't even realize to be very interesting. I'm wondering if I will experience the same thing---it's so easy to dismiss things that are going on as we all have such busy lives.
Take care and let us know how your dad is doing.
Robin , Best of luck with you're ultrasound today , You are in my prayers and wishing you the very best!
As for hospitals ,our population is over 100 k and we only have 1 hospital here .The closest hospital is 8 hrs away Winnipeg,Manitoba or Toronto,Ontario which is a 16 hr drive. I know I'm just being a worry wart and really should try to relax. I'm trying my best !
As for feeling bigger ,puffier I don't "think" I have experienced that . I have gained quite a bit of weight the last few months (eat when i'm stressed) ,but I did point out to my family doctor a long time ago that it lumps out on my right side (very noticable difference) ,he had felt my tummy and said it was nothing . Now this has come up ! For a long time now , I thought my doctor was thinking I was a hypocondriac because he kept sluffing off all these strange symtoms I was experiencing. I think he is finally taking me somewhat serious ,which is a start ! At my last appointment with him ( pre-op) I asked him if it was possible that this thing could be pushing on something that would cause me to have sharp pains under my right rib cage and that sometimes I get the feeling as if my rib cage is popping up , very strange. He said not likely , that maybe it is my gallbladder and not to worry ,we will get me back to good health. I have also read a few stories that women have experienced swelling and pain in the legs , is this possible from cysts ? I could barely walk in June and still limping, had to have my knee drained (alot of fluid !) .The doctor was going to test the fluid ,but ended up putting it in the wrong tube to be tested for the hospital ,had to disregard it ,so never got any results. They did a x-ray and said it looked like maybe arthritis ! I thought , ohhh jeeze , what next ! But the pain is still severe in my knee ,swollen and in my leg (burns and pinching feeling ) .Believe me , I have a high tolerance to pain ,I delivered all 4 of my babies naturally ,no pain meds and rarely take anything for pain . But it seems I have broken down ,I can't stand it !!!!! Like I have said , I feel like I'm falling apart .Oh well ,I'll know soon enough , ct scan tomorrow and surgery in 8 more days .
Curls , thank you very much for all you're support and reassurance. I never knew that I should ask for an oncologist to be on call ,I know I have wanted to ask that a heart specialist be in the building but thought they'd think I was some kind of worry wart !!!!!
Thank you for listening to me vent ,I know we all are experiencing alot of problems and it is so nice to have support.Best of luck to everyone , you are all in my prayers . Sheri
Does anyone know what to look for on a ct scan ? I had my ct scan yesterday to take a better look at my cyst and I got a copy of it on cd. Just curious of any pointers on what to look for .
Hi, about that collection of symptoms...I have a thought. When I had the cyst removed, my CFS improved. It was obviously draining my entire system. Therefore, once you have the cyst taken care of you'll have to see what symptoms are left. Even if they aren't typical or directly related, maybe like the CFS, they are weak points and reacting to the inflammation in your system?
Thanks for the wishes for my dad. I'm sorry to hear about your mom-in-law but it's good that she's feeling better. Hopefully there will be something for my dad although it seems to be major surgery with week in hospital and only possible solution. But he can't be doing this endocscopic surgery every three months for the rest of his life. At least he's well enough to be googling himself crazy on the internet looking for info!
Had a letter to the editor printed in the local area paper today. Quite a surprise. I didn't even think they'd read it, let alone print it!
I have no idea how to read a CT.
All the best!
Hi , just wanted to vent again !!! I prepped for surgery all day on the 15th ( no eating) and the gyno also wanted me to do a bowel prep because ovary is close to the bowel . Went to hospital in the morning on the 16th , at 9 am , surgery booked for 11:30 . All prepped with intervenus ,had antibotics etc then they decided to come and tell me at 1:45 that the lazer laproscopic machine is broken ! I wanted to see my gyno , ask questions about my ct scan , but of course , no such luck ! Got an appointment to see him next friday , this sure is a waiting game !! Tried to get in to see my family doctor cause he could give me results , but his secretary said " nope ! he is on holidays again ,won't be back till the 30th . I told her what happened and she said " it is rediculous , we spent all this money building a new hospital and everything breaks down all the time . I can see now , why my regular gyno made that comment about not having surgery in thunder bay !!!!!!! well , i guess i have to just wait and try and be patient !!
Hope you are doing well and my thoughts and prayers are with every one of you .
Yoy. Hang in there! It's better to have it done after the machine is fixed up and working well, than before! That is ridiculous, especially that your doc couldn't fit you in on an emergency basis just to give you some piece of mind. Meanwhile, do you want to call the 8 hr away place and see what the options are for getting it done there? It is good though to have your doctors local for the follow ups of any complications. You've definitely earned venting rights here!!!!! and a few more !!!!!'s. Hope you can at least feel alright-ish and relax while you're waiting. Take care.