Barb
Pink Quartz Member (0-10 Posts)
Joined: 07 Feb 2010
Posts: 3
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| Hi I am Barb |
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I am 46 and was diagnosed with a 10 cm fluid filled cyst in December, I had the CA-125 done and general blood work everything came back okay, my periods have not changed no cramps, just some discomfort during ovulation which I have always had, and if I sit too long a feeling of burning or pinching but that may be because I tend to slouch forward when I sit and due to my anxiety about all of this I have been sitting not moving way too much.
I suffer from extreme anxiety disorder, and OCD thinking when anxious, I didn't want surgery that was my biggest fear and my gyno has said because of my blood work and no other problems at this point we will wait and see, also my second ultrasound two weeks ago showed the cyst a smidge smaller
here is where I am a nut, I was terrified of surgery didn't want it and now all I do is obsess about still needing it or the cyst rupturing I have read about ruptures and I know the worst is always on the net but it scared me terrribly
I had an etopic pregnancy 21 years ago so have a good idea of rupture pain.
MY Dr told me if the Gyno said to let it go for now unless things change I should have it out of my mind and not be obsessed with it..but its all I think about, that I may need the surgery..its a vicious cycle for me
I see my family Dr tomorrow and will ask him about having the cyst drained through ultrasound I am not sure if they do that here in Canada? I just need some thoughts advice and support about moving on from this any comments and advice will be greatly appreciated
thanks so much in advance I am paralyzed with fear and anxiety not able to read socailize anything its my daughters birthday Wednesday and I need to get a grip..
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Mon Feb 08, 2010 8:52 am |
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estria
Amber Member (250+ Posts)
Joined: 19 Nov 2007
Posts: 273
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Hello Barb,
I was you back in December of 2007 ... to a tee !
I was also diagnosed with a very large fluid filled cyst on my left ovary and I decided not to have surgery but to watch it with regular ultrasounds. I also would have done anything to avoid having surgery, ANYTHING ! I wanted my body left untouched and hoped with every ounce of my being that this thing would shrink. The cyst started out at around 8 cms and over the 18 months that I watched it, it grew to almost 9 cms. In addition, there started to be some thickness in a small section of the wall of the cyst which only served to freak me out even more. They assured me that the cyst was still a simple fluid filled cyst but my mind automatically thought the worst. When a radiologist finally did one final ultrasound and compared all of the previous ultrasounds, he said that the cyst was slowly growing and although it was not dangerous, it is left up to the discretion of the advising surgeon to decide whether or not to take it out, especially in light of all of the room that this thing was taking up (my uterus was moved over to the right). At this point, my gynecologist said that she recommended we take out the left ovary and tube. Well you can only imagine how upset I was at this.
However, I had to admit that removing the ovary was the only way to avoid the same thing from happening again and from me having to go through another surgery. Also, by removing this darn thing, I would be able to travel without worrying. I had gone on a cruise the year before worried sick that the thing would rupture and that the travel insurance that I had would not cover any health costs because it was a "pre-existing condition". Even though I was told that a rupture event was unlikely, I still worried about this.
I too have mild OCD under normal circumstances (you know, checking to make sure the door is locked several times before going to bed, making sure the stove is off before leaving the house etc..) and this escalates when I am anxious about anything, especially a health event. Everytime I had an ultrasound scheduled (I went every six months), I would get very irritable before and of course after, because the cyst was never exactly the same as before (each radiologist would describe it a little differently, of course, and this happens ALL of the time even if the same radiologist had to do the same ultrasound).
Like you, I have horrible ovulation pain and I also blamed this on the cyst. In my case, I had only started to ovulate when the cyst was discovered because I was on the birth control pill for 20 years prior to this. I later discovered that the cyst had nothing to do with my ovulation pain.
I finally had my cyst taken out last April 28th by laparoscopy. My procedure was at 8 am and I was home by 1 pm. The pain was bearable and after a few days of walking slowly and resting, I was in pretty good shape. Although my body took a few weeks to TRULY feel the same as before (you can still do whatever you did before about 4 days after the surgery but you still feel tender for a while) my mind was liberated thinking that I no longer had to worry about the cyst rupturing or the remote possibility of ovarian cancer (being the catastrophic thinker that I am, I was always worried that the cyst might change into cancer even though there is absolutely no science to support this and plenty of science to support the contrary).
You will have to decide what you are willing to live with. In my case, the time I took watching the cyst also gave me the time to come to terms with having to have surgery. I also read everything I could get my hands on about ovarian cysts and this helped immensely to inform me about these things. Eventually I had to let go and give it over to my gynecological surgeon who, fortunately for me, was a wonderful doctor who always listened to my concerns and sometimes even knew what they where before I said anything.
I too had thought of cyst aspiration as this had been suggested to me by one of the many doctors I consulted with when my cyst was discovered. However, there is a good chance that the cyst will grow back because all aspiration does is to remove the fluid from the cyst. The wall of the cyst is still there and the thing will most likely fill up with fluid again. When my surgeon finally recommended surgery I asked her about this and she said it is not a good idea as there is a good chance that the problem will still remain (I also got the distinct impression that this is not a painless procedure as some of the fluid will go into the abdominal cavity, presumably causing pain ... I think this is done by interventional radiologists under the guidance of ultrasound). By the way, they do indeed do cyst aspiration in Canada (I live in Québec). I think it is not often done just because of the reasons outlined above.
Since your cyst is not dangerous (10 cms is the limit, I believe, and thin walled, fluid filled cysts on one ovary are the least threatening), why not keep an eye on it for a while and see if it begins to shrink ? I have read that this is not as likely with larger cysts such as these but if you say that it was slightly smaller at your last ultrasound then there is definitely hope. The time will also allow you to wrap your brain around this so that you can begin to identify with your problem a bit better. As to the fear of rupture, carry ibuprofen with you at all times and if you feel any pain coming on, take one or two. If ibuprofen is taken early enough, it will severely reduce pain from a rupture. My surgeon recommended this when I was watching the cyst. She said not to wait too long though as once the pain is in full force, it is much more difficult for the drug to work properly. Keep in mind also that a cyst rupture is not nearly as life threatening as an ectopic pregnancy (not even close). However, ovarian torsion is another issue to consider with large cysts and this means a trip to the ER for emergency surgery. This is quite rare though.
I hope I have helped you a little. Sorry this is so long but your situation is so much like mine was, I had to share it with you in the hopes that it will ease your mind a little. If you have any questions or concerns that I can help with, please feel free to communicate again.
Take good care of yourself.
Estria |
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Mon Feb 08, 2010 10:14 am |
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Barb
Pink Quartz Member (0-10 Posts)
Joined: 07 Feb 2010
Posts: 3
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Thank you from my heart Estria it means so much to me that you took the time for such a detailed reply. I saw my family Dr this morning and his is comfortable with my gynos choice to do the wait and see, he said realistically if its going to rupture I could have surgery booked for tomorrow and it could rupture today so there is no use me making myself sick with worry.
He also like you, put my fears to rest in comparing it to my etopic pregnancy where my tube ruptured, he said the pain and procedures would not be like that, I think all these tests etc brought back a lot of emotional pain for me that I went through when I had the etopic, it wasn't diagnosed until over three months into the pregnancy so by that time I was very very sick, and needed hours of surgery...not a good experience at all.
He said in a couple of months if I would like another ultrasound we can book it but he expects little change either way. So I feel a lot calmer and if it does rupture I feel I can handle the pain, pain doesn't scare me surgery does! to detail just how bad my fear of being put out is, when my tube ruptured and I had internal bleeding I was still fighting being put out even in the operating room, I really need to work on this fear.
I am in Ontario and I asked about the drainage and he knows of no one who does it, he said I would have to ask my gyno to refer me for that if he knows of anyone and I would have to pay out of pocket which is fine with me if I can avoid surgery!
thanks so much again and I will keep you updated, I am so glad you came through your experience okay and feel better now I hope I can say the same one way or another very soon
Barb |
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Tue Feb 09, 2010 5:15 pm |
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estria
Amber Member (250+ Posts)
Joined: 19 Nov 2007
Posts: 273
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Barb,
I would strongly advise you to keep an eye on that cyst with regular ultrasounds. A 10 cm cyst, even if it is only a simple cyst, should be followed. Also, if there is a rupture, it can be extremely painful BUT the situation is very rarely life threatening. Usually surgery is needed after a rupture if the cyst contains blood (some cysts bleed into themselves) or if the cyst is filled with mucin (as in a mucinous cyst). Watching it for a while should not be dangerous but if it persists, you may not have a choice but to have it removed. I am just warning you ahead of time so that you are not disappointed later on. Oh and your physician is wrong. If you find a hospital that does aspiration, it is definitely covered by OHIP. it is a medical procedure and I don't know why a doctor would tell you this when he doesn't even know it exists (!). However, as I mentioned, this will definitely not solve your problem and I seriously think that it is not a painless procedure. I have since read about this and they are kind of blind when going in to do this. They are guided only by the ultrasound and although the ultrasound is good to see large structures and so forth, I really do not think it is a great tool to perform invasive techniques such as this. Believe me, if this was a good option, I would have been the first to do it and avoid having surgery.
As for the anaesthesia, you really should not worry so much about this. I was also extremely nervous about this but I can tell you that one almost never suffers complications from the anaesthesia these days. The drugs they use now are MILES ahead of what they used to use even 10 years ago. You can trust me on this one because someone very close to me is an anaesthesiologist. The main thing we women should worry about in regards to anaesthesia is post surgical nausea and if you let your anaesthesiologist know about this ahead of time, they can give you something for this which is totally effective. I had absolutely no nausea whatsoever and I get sick from seeing a film that has too much movement and doesn't use a steadycam (really sick .. I have to walk out). The experience with my anaesthesia last April was very positive. I had a very nice sleep and woke up feeling refreshed ... only to realize that I had forgotten I was having surgery so when I felt my sutures I just thought, "Oh crap, I forgot I'm in the hospital !" So just to tell you that the drugs they use these days do not remain as long in your system and the monitoring machines they use are truly state of the art. You should also keep in mind that the anaesthesiologist is an MD specialist (just like your surgeon), something most people don't know, with five years of residency training and sometimes even with additional fellowship training on top of that (if he or she is in a university hospital, an additional year of fellowship training is required). These guys are just as competent with anaesthesia as your surgeon is with his or her specialty.
I know that the only people anaesthesiologists get nervous about putting under are people over 70 years of age who have heart and / or breathing difficulties and even these folks make it out of anaesthesia just fine. Young women such as ourselves are usually a pleasure for these doctors to work with because comparatively speaking, we are much healthier. If you do end up having to have surgery and you are still freaked out about the anaesthesia, I would recommend that you ask your surgeon if you can set up an appointment with your anaesthesiologist and talk to them about all of your concerns. They will answer all of your questions and put your mind at ease. In my case, I was concerned about my hip which tended to give me problems when I turned it a certain way for a long time. Even though the surgery involved me being in the gynecological position for an hour, the anaesthesiologist was incredibly careful to keep my leg positioned properly so that when I woke up I did not suffer any problems. I was also freaked out because I had a cold but my anaesthesiologist asked me a few questions to make sure there was no fever and we were able to go ahead. The main issue with surgery is always infection so if you have a fever they will not operate. Infection is the thing that you need to stay away from, before and after surgery, and this is what hospitals fear the most.
I hope this has helped you a little. You remind me so much of myself as you seem to have exactly the same concerns that I had. This situation is different from your ectopic pregnancy (which is a life threatening situation) and if by some chance you do need to have surgery in the future, it will not be under emergency circumstances. Take the time to come to terms with having this thing and then move on and try to keep your mind off of it. Just keep an eye on it to make sure that it is not growing or changing that's all. If it begins to give you trouble with symptoms, you may also have to consider having it removed for that purpose. Mine was with me for so long that I named it (Celine) ... I also named the small uterine fibroid that they used to see on my ultrasounds (Fred). Fred is still around these days.
Take care of yourself.
Estria |
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Wed Feb 10, 2010 7:53 am |
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Barb
Pink Quartz Member (0-10 Posts)
Joined: 07 Feb 2010
Posts: 3
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thanks for more great info you're the best! I had heard they have come miles in putting people out, and my Dad who is almost 85 had surgery in September and did amazing so I keep thinking of that. If it comes down to it I will step up, I tend to worry more about what needs to be done that getting it done.
I have never suffered being sick after surgery, but after the etopic surgery it took me forever to wake up that is what freaked me out but I had gone in for lapo surgery and when then got in there they had to do a full incision and I was full of infection that needed to be cleaned out, plust have my tube reparied the fetus removed etc, on top of the initial lapo so I suppose they had to get me a lot more heave meds to keep me out longer than expected, also they gave me narcottics (sp?) so they would have added to my longer recovery after.
If I have surgery this time I will request no narcottics unless I ask for them I did not like being so out of it for so long, when I kind of woke up I had no idea what they had done to me and couldn't even speak to ask so I was laying there out of it with everyone talking around me and not able to communicate, I do think that was more the pain drugs though what really upset me was my Mom Dad and husband were with me and I could hear them say they may as well leave till morning as I was "sleeping" and I so wanted my Mom to stay with me because I was so sick and scared and I couldn't voice that it broke my heart when they all left.
When I went into the surgery funny enough they thought it was a cyst they were removing, so everything that happened was quite a shock they thought I had lost the baby months ago, and I had to sign a paper that they could do a hysterectomy if needed so waking up and not knowing if that had been done was awful for me I was only 24 at that time. It was just a truly bad heartbreaking experience in so many ways
you have made me feel much better
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Wed Feb 10, 2010 8:34 am |
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estria
Amber Member (250+ Posts)
Joined: 19 Nov 2007
Posts: 273
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Oh my gosh ! No wonder you are nervous ! What a horrible experience.
Here is what you will need to discuss with your gynecologist. Ask him first if he would be able to remove the 10 cm cyst by laparoscopy. This should be possible as I had a 9 cm cyst and they removed both ovary and tube by laparoscopy. If he does indeed say yes then ask him at what cyst size does the procedure change to a laparotomy (ie. the full incision). This is what you will have to watch. This is actually why I decided to go in sooner rather than later to have surgery. My cyst grew from around 8 cms to almost 9 cms and I decided that I would much rather have a laparoscopy at a younger age than a laparotomy when I am older. A laparoscopy involves a much faster recovery and less risk of infection.
As to the meds, I have a feeling that they were a bit heavier with the drugs because it was an emergency situation and they did not know how long you would need to be out. For a planned surgery this should not occur. My procedure was about one hour. However, if you do have to have surgery, you absolutely need to discuss this experience with your anaesthesiologist so that your concerns can be addressed. These are very valid concerns and the doctor will definitely understand why you are nervous and take steps to avoid a recurrence of this.
I so agree with you about the pain control. When I came out of surgery I asked for a little something to control the pain and at first the recovery room nurse gave me a bit a Fentanyl which worked very well without the brain fog. But then when I was in the outpatient room they asked me on a scale of one to ten what my pain was and I said four. They gave me Demerol which I absolutely did not like. Yes it controlled the pain but it also made it very difficult for me to speak. I slurred my words and found it difficult to think. Of course this wore off in about an hour but during this time my surgeon had come to talk to me and I wanted to be able to speak with her properly and I couldn't. I could have murdered the nurse who gave me the shot. All they had to give me was a strong anti inflammatory like Naproxen as my pain was not that bad. You may want to mention that you HATE disassociative types of narcotics like Demerol (the doctor will guess this from your experience, I am sure).
I am glad that you feel more at ease about the situation. Hang in there and if you have any questions or concerns, feel free to come back and ask.
Regards,
Estria |
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Wed Feb 10, 2010 10:47 am |
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