I wondered if any one has been through what im going through at the moment?
I have recently been to my gp because my stomach is so bloated, i felt like i was nine months pregnant and full of wind. I wasn't getting much pain, but thought it maybe IBS or a wheat allergy or something.
Anyway he sent me for an ultra sound scan, within two weeks. I was told by the lady who did the scan that i had a large ovarian cyst, by the time i got home the gp was phoning me, i was so worried as it was all happening too quickly, i know thats a good thing, but you still question it don't you? he said he would referr me to a gyneacologist. Anyway when the letter came through the other day and i saw the word oncology i just panicked!! my husband bless him has gone through hell with me going on convinced i have cancer.
I phoned my gp to ask how big the cyst was, he said it was a large complex cyst about 8 inches x 5inches x 7 inches, i said thats huge!! but he said he has known bigger, which i don't know if that is suposed to make me feel better or what.
My appointment is on thursday of this week, and im so scared of what to expect, just wondered if anyone could shed any light!!!
I am 33 have two children, my husband and i were thinking about a third child, but now obviously am not so sure, i did have two c sections also.
I have had the CA125 blood test which apparently have come back ok, but i keep reading on the internet that even they are not one hundred percent accurate.
My symptoms seem to be getting worse by the day now, even more bloated, weeing alot, one minuet im constipated, then i have diarroeah, i also get cramps down my buttock and my thigh.
Has anyone else been through this and let me know what to expect at my appointment i would be truly gratefull
Thanks x x x
The following 2 users give hugs of support to: mimi1234 Creator (01-29-2012), zoah0719 (03-21-2011)
I am very sorry that you are going through all of this. I know that the anxiety that these cysts cause can be quite overwhelming. I would highly recommend that you get a copy of the radiologist's report which will give you exactly what was seen on the ultrasound. This is extremely important as ideally you should be well informed when you go in to see the gynecological oncologist. Perhaps I can offer you some information which may be helpful.
The CA-125 test can be unreliable in premenopausal women such as yourself BUT this is in the early stages of ovarian cancer. This means that if by some chance you actually have cancer and the CA-125 is inaccurate in your case, you would most likely be at stage 1. Ovarian cancer is actually quite curable if caught in its early stages (the problem with this disease is that it is almost never caught in its early stages). Therefore the fact that your CA-125 came back normal is very reassuring, despite this test's notorious track record.
Once you get the report, you need to check the dimensions and description of this cyst. Are you sure they said inches and not centimetres ? This is extremely important. Also, what does the cyst look like. A radiologist is usually able to identify pretty accurately what type of cyst you have. Dermoid cysts are usually filled with hair and teeth, Hemorraghic or "chocolate" cysts are filled with blood, mucinous cysts are filled with a thick mucous, serous cysts are filled with a lighter liquid. Is the cyst septated ? Septations are like divisions within the cyst and sometimes just these septations may cause a cyst to be classified as "complex". Septations may be due to say two cysts growing together. Anyway, a radiologist will be able to give his or her impressions of what the cyst could be simply from the ultrasound. Over the years since the ultrasound was invented, radiologists have become quite good at predicting what ovarian growths actually are and they are actually even more accurate than the CA-125 test (!). All this to say that you should get a copy of the report in order to have more information before you see the gyne.
As to my own experience, I recently had surgery to remove a simple cyst from my left ovary. I had it for quite some time and when the radiologists began to see small solid sections on the wall of the cyst and anechoic areas, in addition to the cyst growing (mine grew to around 9 cms), I had it taken out by laparoscopy. My operation was April 28th at 8 am and I was back home by 1 pm. The pathology came back about a week later and it was benign (as suspected .. I lived with this thing for almost two years). My sister in law had a much larger 12 cm septated cyst and in her case, the CA-125 came back high. As a result, she was sent to a gynecological oncologist. When the cyst was removed, it too was benign so in her case, the CA-125 was a false positive. My cousin has suffered with ovarian cysts that had to be removed with surgery all of her life. In her case, her first encounter was torsion where the cyst causes the ovary to twist and cuts off the blood supply. She had one ovary removed through emergency surgery. Her other ovary also had cysts and after she had her children she had a full hysterectomy and oopherectomy (she also had huge fibroids that caused problems) ... in her case also ... benign. A close friend of mine had a basketball sized complex cyst when she was only 18 years old. It was so large she looked like she was pregnant. Again in her case it was benign.
Ovarian cancer is a rare disease, especially in younger women (most cases occur in women age 60 and over). Ovarian cysts, both simple and complex, however, are extremely common. I am not saying that your cyst should be left alone. A large cyst can cause problems, even if it is benign. I am just saying that you need to try not to let the anxiety take control of you. Try to hang on and to occupy your mind with other pursuits for a certain amount of the day. Give your brain a mini vacation from worry so that you are more clear headed and less exhausted when you need to make decisions that will affect your health. Most likely your gynecological oncologist will give you his or her opinion based on statistics (taking into account your age, family history, whether or not you have children, if you have even been on oral contraceptives, your build etc..). They will also heavily rely on the radiologist's report and may recommend that you have an internal ultrasound with a doppler flow analysis (this checks if there is any blood flowing to the cyst). I am quite sure that they will need to remove the cyst so go in to your doctor's appointment under this assumption with a list (written down or I guarantee you will forget) of questions that you want to have answered. This is important as you don't want to be bothered with uncertainties after the appointment. Also, if possible, take someone you trust with you (perhaps your husband, if he is a good listener). At times like these our anxiety affects our hearing and we tend to hear certain things and not others. Having a second pair of ears is extremely helpful.
I hope that I have given you a bit of reassurance and some important information which will help you during the road ahead. Oh, and don't bother about your hubby at home. Every single woman I know that has gone through this has said that they did not think that their husband understood fully what they were going through. I am in this group as well. They mean well but they cannot possibly understand the kind of terror that these cysts instill in women (and I do mean "cannot"). Just remember that anxiety will accomplish absolutely nothing except perhaps to make things worse. Yeah, I know, remaining calm is much easier said than done ...
I wish you all the best for your upcoming appointment. Hang in there, I'll be thinking of you and sending good thoughts your way. Come back and let us know how you do and if you feel the anxiety grabbing hold (this is actually one of your worst enemies right now), this forum is a wonderful avenue to vent and to get support.
Thankyou so much for your reply, it was very informative and reasuring.
I will definatley post a reply and let you know how i get on on Thursday. Its so reasurring to know so many people have been through this, and how common ovarian cysts are.
P.S My gp did tell me how big my cyst is in inches, so i know its a big bugger!!!!!
hello mimi i am also one of the unfortunates of a cyst not as large as yours and i have been reading on the boards anyone with similar symptoms just like you i have bloating and pains i hope your ok and everything went well at your appointment hope to see you writing on the boards with good news take care
As to my own experience, I recently had surgery to remove a simple cyst from my left ovary. I had it for quite some time and when the radiologists began to see small solid sections on the wall of the cyst and anechoic areas, in addition to the cyst growing (mine grew to around 9 cms), I had it taken out by laparoscopy. My operation was April 28th at 8 am and I was back home by 1 pm. The pathology came back about a week later and it was benign (as suspected .. I lived with this thing for almost two years).
Hi Estria! So you had it removed at last?! Had you developed new symptoms or just decided it was enough for it to remain in your ovary? Did they do biopsy? What was it in the end? Just what they had been telling you on ultrasounds?
How do you feel since?
Last edited by peace4health; 05-17-2009 at 11:13 AM.
I haven't had that, but I still want to reassure you. First of all they measure in centimeters at all medical practices, not in inches, which are only used now in non medical terminology. That makes your cyst less than half the size you think it is.
Secondly, most cysts are just bags of water. The doctor may stick a needle in it and take the liquid out and study it. The cyst may be totally harmless and may never come back after the liquid is out. If it is something more scary, it is best to get it taken care of than to wait.
In any case go to your appointment and think positive thoughts. You will be OK!
I actually had an ovarian cyst that was just under 5 cm. My doctor put me on a mega dose of hormones to clear it up - almost like a medicinal DNC. I had to take something like 6 birth control pills in one day, the next 5, the next 4 etc until I got down to one pill a day. This basically flushed me out and made this cyst disappear. I bled horribly for that week but after that I felt better. (Before this I had been bleeding for almost 3 months straight with only a week of stopping here and there).
I felt better after that and had no signs of a cyst. In March though she did find a new one but it was only about 2.75cm, just barely considered a cyst, so I am continuing on the hormones.
Your doctor may want surgery or they may want to go about it medically. Depending on your age and risk factors (smoking, children, medical history) they may not go on to surgery right away.
My mom had one that was 10cm and they did remove her entire Fallopian tube because it had wrapped itself around it. But she recovered quickly.
My advice is try to not think about it and do whatever the doctor says and what you feel comfortable with. I remember freaking out! I was so scared but in the end the doctor is there to help you. Good luck!
Hope things are OK and that you have some more information that will help you to decide on the next step. I have a strong feeling that with such a large cyst you will need to have it removed. Hang in there.
Hi Peace4Health ! yes I ended up having to have the surgery because my cyst was not only persisting but it was growing bigger. Therefore my gyne recommended that we do a laparoscopy to have it removed. This is better than waiting and perhaps having to do a more complicated procedure later (it was not stuck to anything at the moment so the surgery was easier). I was in total agreement with this and had been watching it for so long that I was sick of having it hanging over my head all of the time. If it had remained the same size, I would not have given it a second thought (I have a 13 mm fibroid in my uterus which has remained unchanged and am only to happy to name it and forget about it .. I call it Fred !) but quite obviously the size of the cyst kept changing everytime I went in for my ultrasound. The cyst ended up being a benign serous cyst. This is the most common type of finding for cysts and I am only too happy to be included in this group. The surgery was nowhere near as bad as I imagined and except for my bladder which took a little longer to recover, I was almost at full recovery within a week (catheters are evil !). I had no shoulder pain and the gas after surgery was not that bad (I walked a lot so this must have helped). The incisions are small and I only needed anti inflammatories to handle any pain the evening of the surgery and the following morning. That's it. After that it was not painful. I am not happy to have had to have my left ovary and tube removed but I guess sometimes we have to handle the cards we are dealt in life. I am now relieved that this whole cyst episode is behind me for good (let's hope as I have one more ovary left). On the bright side, I have now cut my ovarian cancer risk in half.
Thankyou all so much for your kind responses. Time for update!!!
Firstly i saw my gynea last thursday who confirmed the cyst is the size of a rugby ball!! He does think its a simple cyst, it is fluid filled and has no or limited blood supply going to it (which i think is a good sign), i am going to have an op to remove it, cutting me from my navel to my bikini line.
My gynea is going to take some of my lymph nodes just in case it is the dreaded C, it will let them know how far it has progressed.
My gunea has said that he thinks my other ovary is ok, should be ok for more children if i wanted them and the fact that i have had two previous c sections was not a problem.
It has all been going so quickly, the hospital phoned me on Monday to have a ct scan the following day.
So now i just sit and wait for my operation date, which fingers crossed wont be too long, my gynea said about 3-4 weeks, sooner if possible.
My tummy is getting bigger by the day, i literally look 6 months pregnant and people keep asking me when its due!!!
I feel more possitive at present, it was (and still is) so scary and all happening so quickly.
I will keep you all posted, thanks for all your support, its been a great help
Very glad to hear that it is a simple, fluid filled cyst with little to no blood flow (yes this is good because cancerous tumours are most often totally solid or part solid and part liquid and they usually go through something called angiogenesis whereby they create connections in order to sustain themselves with bloodflow). Keep in mind that your CA-125 showed normal so these three things are very good signs. The only bad thing is the size of this thing but it is not that unusual to find this in women of all ages (sometimes these things just keep on growing and there is plenty of room in there).
I believe you said that it was a gynecological oncologist that was doing the surgery, right ? If so, this is a good thing as these sub specialists are trained in the careful removal of these things. They may also be able to do a frozen pathology during your surgery in order to ensure more quickly that the growth is benign. However, the regular pathology will still have to be done as the frozen section is not as reliable. You will have your reassurance with pathology about a week after your surgery but usually the surgeon knows more or less by the look of the cyst whether or not it is dangerous.
I hope you get this thing out asap so that you can return to a more comfortable existence (no wonder you look pregnant, that's one huge bugger). If you have any concerns or just need some reassurance, feel free to come back. We will be here.
Estria, when reading your last reply, I thought to myself, 'what a good post'. And as I came to the end and read your name (I hadn't looked on the left sidebar this time), I said, "No wonder! It's Estria!"
Last edited by peace4health; 05-21-2009 at 08:47 AM.
Well, after going through hell myself with this ovarian cyst and reading practically everything there is to know about ovarian cysts (including ultrasound photos of differents types !), birth control pill side effects and ovarian cancer .. in addition to having a friend of mine actually go through a diagnosis of stage 3-4 ovarian cancer and its treatment with two types of chemo and surgery (she is doing really well and has been cancer free for a year now .. touch wood) .. I would certainly want others to benefit from this experience and quite frankly it is often what we don't know that actually causes us the most anxiety.