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Old 03-24-2009, 12:13 PM   #1
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Unhappy Scared and Unsure What is Going On

I was rushed to the emergency room 2 weeks ago and a simple follicle cyst and UTI were discovered. Ever since then, I have been all the horrible symptoms including full abdomen, gas, abdomen pain, etc.

I met with an oncologist right a way to make sure it is nothing more. I have a laproscopic procedure scheduled in 3 weeks.

My issue - I am scared as hell. I had a friend that passed away from ovarian cancer at 33. I am 33.

I am having horrible cramps, pains in my leg, joint pain, etc.

I just worry that the ultrasound that found the cyst is distracting professionals from finding something more. Is that possible?

My other issue is that I have been taking birth control for a year now - after the birth of my son and I breastfed him for a year. Any encouraging words would be helpful.

 
Old 03-24-2009, 01:21 PM   #2
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Re: Scared and Unsure What is Going On

So sorry you're going through this. I wish I had some answers, but I really don't. Remember that ovarian cancer is the "silent killer". Your symptoms are far from silent.

I'm guessing that you've had a lot of blood tests to rule out infection?

Wish I could be of more help.

 
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Old 03-24-2009, 01:25 PM   #3
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Re: Scared and Unsure What is Going On

That sucks. I'm sorry, but I have no idea what's wrong with you. I pretty much know nothing about ovarian cancer and ovarian cysts.

I am glad you are getting this all checked out. What laproscopic procedure are you having?

I'm not sure what your question is about birth control, but from what I understand it actually reduces the risk of both ovarian an uterine cancer.

I hope your doctors take good care of you and quickly find the source of what's making you feel so crappy!

 
Old 03-24-2009, 06:56 PM   #4
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Re: Scared and Unsure What is Going On

Quote:
Originally Posted by LilyL21 View Post
That sucks. I'm sorry, but I have no idea what's wrong with you. I pretty much know nothing about ovarian cancer and ovarian cysts.

I am glad you are getting this all checked out. What laproscopic procedure are you having?

I'm not sure what your question is about birth control, but from what I understand it actually reduces the risk of both ovarian an uterine cancer.

I hope your doctors take good care of you and quickly find the source of what's making you feel so crappy!
Thank you for the virtual hugs. I met with a gynecological oncologist after my OB/Gyn said "everything feels normal". I decided to take control. Now - I have been doing a lot of research on cysts and talking with others who experienced them. My symptoms match the diagnosis of simple cyst but - as you may know - the symptoms are so similar to ovarian cancer. Sorry - it is my nature to think the worst.

Anyway - my GO is being great and said that we should "move ahead" to rule everything out. He also thinks I may have endometreosis (sp).

I just know that my friend went through and I worry because my symptoms mirror hers though my symptoms also mirror others who have had cysts.

I am doing the right thing. I pay for good insurance so I can use it. I am blessed to be able to do this before things get worse.

Yes - 3 weeks seems like an eternity but I have told myself to stay positive. At least I have a confirmation that it IS a simple cyst. If there is more - it will be found.

Thank you.

Last edited by dcmomma; 03-24-2009 at 06:56 PM.

 
Old 03-25-2009, 05:31 AM   #5
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Re: Scared and Unsure What is Going On

Hello dcmomma,

Hang in there. You are not alone. I too have a simple cyst that I have been watching for over a year and a half now. Since it is slowly getting larger, I will be having it removed at the end of April. I too worry that when they get in there they may find something worse than expected. I have really terrible ovulation pains and have had two incidents of acute pain which felt like huge spasms. I have a feeling that this pain occurs when the cyst is increasing in size and stretching the ovarian tissue.

I have been dealing with this for a long time now and would consult you not to give in to your doubt as it will destroy you. Most likely the situation is exactly what it seems, a simple cyst that is causing you some troubles. You are even younger than I am (I am 42 years old) so it is even less likely to be cancer in your case. But I know how you feel. I too went to see two gynecologists and an oncologist when my cyst was found and everyone said that the cyst is benign. I am now with a very good gynecologist who will be doing my surgery and she is very reassuring.

I also took the CA-125 test which reassured me just a little (this test is notoriously unreliable in premenopausal women like ourselves). I will be having another CA-125 before going in to surgery and I have asked my doctor to put the cyst in an laparoscopy bag before aspirating and removing it. Doesn't hurt to be as careful as possible, even if the thing is most likely benign. She will be taking my entire left ovary so hopefully this won't occur again (my right ovary is fine and will take over).

At least the laparoscopy will mean a quick recovery and not as much pain as a laparotomy. Don't forget to take stool softeners and to drink lots of water and eat lots of fibre after surgery. Your bowels will take time to get going again. I have also heard that women sometimes experience some shoulder pain due to the CO2 that is inserted into the abdomen during surgery (so that they can see). Use heating pads for this and Gas-X for any post surgical bloating. I am sure that we will both be fine and I personally cannot wait to put this whole experience behind me.

Take care of yourself.

Estria

 
Old 03-25-2009, 06:46 PM   #6
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Re: Scared and Unsure What is Going On

(((HUGS))) to you dear. thank you.

It is just so confusing and worrisome. Every little symptom scares me. I jump online and try to find a reason for it. When I don't - I think the worst. I spent the whole day today trying to put my mind at ease.

My ovaries are normal sized.
My uterus is normal.
The cyst was 2.2cm which is not so huge.
I have had a child
I was a breastfeeding mommie for a year
I nave no family history of cancers
I am healthy

If all this is good - why do I worry? I guess it is just human nature to think the worst. I am going to schedule my blood test (CA-125) for the laparoscopy. I told myself I have two options - I can face my fears and do it or sit here and worry about it for the rest of my life. Better to know - though - a side of me does not want to move ahead. Sometimes - I feel ignorance is bliss.

Thank you and I will be thinking of you ;-)

 
Old 03-26-2009, 05:16 AM   #7
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Re: Scared and Unsure What is Going On

dcmomma,

Hmmm ... you say that your cyst is a simple follicular cyst that is only 2.2 cm ?! Why does the doctor want you to have surgery to have it removed and he is not simply doing another ultrasound in 3 menstrual cycles ?

Do you know that healthy women develop follicular cysts on their ovaries every single month ? These eggs carry our eggs and about 14 days after the start of your period the most dominant cyst bursts open and releases an egg into your fallopian tube. Then the "shell" of this cyst (the corpeus luteum) produces progesterone in order to get your uterus ready for conception. The other cysts regress back into the ovary and the cycle begins again at the start of your next period. Ovarian follicles are COMPLETELY NORMAL and do not need surgery and if yours was discovered two weeks ago then how do they know that this is not a completely normal follicular cyst ?

I would strongly suggest that you get a second opinion on this because you may be going into surgery to remove a perfectly healthy follicular cyst that will go away by itself ! My simple cyst is almost 9 cm and has been sitting on my left ovary for over 18 months. It is not a normal follicular cyst and therefore is completely different and when I go for my ultrasounds there are sometimes other small follicular cysts on my ovaries that come and go. This simply means that I am normal and I do not worry about these AT ALL, only about the abnormal cyst.

I sincerely hope that you don't end up having surgery for nothing and that you are not freaking out over a completely normal occurence (undue stress is not good for you). A simple cyst that is unilocular (on one ovary), thin walled with no septations or any solid components and that is less than 5 cms is not only 99.9 % probability completely harmless but it is also 99.9 % probability a completely normal occurrence. Find out why your doctor is willing to put you through surgery as surgery is definitely not indicated unless you have some other issue of which I am not aware.

I hope I have helped to calm your fears even further. Of course if this cyst is causing you a lot of pain then that's a different story but in this case, make sure that it is the cyst that is the culprit and not something else. You definitely don't want them going in and finding out that .. oops, the cyst is gone. If you are in a lot of pain then the doctor may do some exploration during the lap to check for endometriosis. This is another cause of pelvic pain, especially if the pain comes with your period or some other cyclical time like ovulation.

Take care of yourself and all the best.

Estria

 
Old 03-26-2009, 05:22 AM   #8
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Re: Scared and Unsure What is Going On

Oh and in case you are thinking that your antiovulants will keep you from developing ovarian follicles, it is now known that the modern day generation of birth control pills are not strong enough to keep women from developing follicles and they still occur. Women still have effective birth control though because the uterine lining is kept thin enough that conception is not possible (the egg cannot implant itself and conception cannot take place).

Hope this helps. Remember, knowledge is power !

Estria

 
Old 03-26-2009, 06:50 AM   #9
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Re: Scared and Unsure What is Going On

Estria - you are so wonderful. Thank you. You are an

Because this is all new to me - I am just scared and confused. I base all my fears on the fact that my symptoms mirror my dearly departed friend who died of ovarian cancer last year at 33.

I have been doing a lot of reading and have found that the symptoms for ovarian cancer are the same as endometriosis, ovarian cysts, PCOS, and even pelvic inflammatory disease - to name only a few.

The doctor I have (a gynocological oncologist) - I truly trust. He feels that I may have endometriosis as well and said the only true way to tell is through laparoscopy. He never pressured me into anything.

I admit - I am just plain scared. The pains I have in my arms and legs. The throbbing pain in my left ovary. The fullness on the left side of my body.

Your story is so helpful. I so appreciate your honesty. (((HUGS)))

 
Old 03-26-2009, 09:26 AM   #10
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Re: Ovarian Cyst/Scared and Unsure What is Going On

Hello!
I too had terrible cyst problems on my ovaries. It is true that every month your ovaries produce follicular cysts, totally normal, and these may stay around a month or two and then dissolve on their own. I had one we "watched" with my gyn surgeon for a year and a half. He looked at with ultrasounds and took cancer marker tests every six months. After a year and a half, this cyst disapperaed on its own. It was quite large
Now, the other cysts I had that required surgery to remove - grew on a stalk from my ovary. Blood was pumping down the stalk (like an arm) to the cyst. When the stalk would twist - excruciating pain to me, like a sword stabbing down my leg. You couldnt' touch my leg without terrible pain. My surgeon said this pain is caused by the stalk twisting and cutting off the blood supply flow to the cyst (like if you twisted your arm).
IF the stalk happened to untwist on its own, I would be fine again. But I had to have two of these removed over the years.
I am now currently consulting with a naturopathic medical doctor. (the best of both worlds) regarding nutrition to protect myself and perhaps end these cysts).
I am supposed to take an iodine test. Something about cysts growth perhaps caused by lack of adequate iodine in the diet, I think. Had to stop pursuing that treatment as unfortunately, am now fighting the cervical dysplasia and have to wait to take the iodine test so results aren't skewed.
Hope this information helps!!

 
Old 03-27-2009, 05:01 AM   #11
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Re: Ovarian Cyst/Scared and Unsure What is Going On

Hello dc momma and victorian,

dc momma, I am very glad that you are more reassured. Yes it is really awful to see someone go through this horrible disease and I can sympathize with this as well. You see, when I was first diagnosed with this cyst, a colleague of mine was diagnosed with ovarian cancer. She was around 60 years of age at the time. She had to go through hell .. surgery, two types of chemo etc.. but she is fine now. She is a courageous lady who faced her ordeal with strength and prayer. Her cancer was staged as 3c perhaps 4 so she has to live with the possibility that it may come back. Like you, seeing this happen to someone else added to my anxiety and I had to do a lot of reading and be reassured by many doctors but in the end reason won out over irrational anxiety. Just because your friend had ovarian cancer it certainly does not mean you will (unless she was your sister in which case I would keep a closer eye on things). Try to help yourself by instigating a strict healthy regimen of great natural food and regular exercise. This is what helped me to regain my sanity and it also made me loose over 50 lbs too (a definite plus for my upcoming surgery). Don't be afraid to reach out and talk to others as this also helps tremendously .. like these wonderful boards.

Victorian, your contribution to this conversation is particularly interesting. You say that you had a large ovarian cyst that did not go away for a year and half and then disappeared ? I have not heard of too many cases of this happening and part of my anxiety is that they will open me up and find that my cyst has disappeared .. although I sincerely doubt this will happen in my case as the cyst seems to be growing. May I ask how large your cyst was and if you experienced any significant symptoms between your second last and last ultrasound ? Did you feel the cyst rupture or regress ? As to the other types of cysts, this must be awful for you. The excruciating pain you experienced when the cyst torsed the ovary is caused by the dying process of the ovarian tissue due to lack of blood and oxygen and I have heard that it is truly quite painful. This is one of the reasons I want my cyst removed as when it gets to be too large this risk increases. I too have heard about the iodine issue and wonder about it myself. Just be extremely careful about who does the iodine test for you as too much iodine is toxic.

Ladies, I truly hope that we all find our peace at some point. I suppose we could have some other acutely life threatening condition but the anxiety and pain that these cysts can cause and having to live with this long term is truly not good for our quality of life. Perhaps someday they will fine a solution for us.

Take care of yourselves and all the best.

 
Old 03-28-2009, 07:26 AM   #12
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Re: Cyst golf ball sized/Scared and Unsure What is Going On

Hello Estria,

The cyst at this time was golf ball sized.
I have had one rupture.
I also lost an ovary to another one that could not be removed without the "ooffarectomy" (Not spelled correctly, but that is what the removal of ovary is called and I love that word - hate the procedure) Sounds like you should just say "oofff!" and the pain will go away.

The lost of that ovary/abnormal cyst production I relate to discovering from my really great surgeon that a former horrible surgeon had STABBED MY OVARY during a simple surgical procedure - left me to lie in the hospital dying with undiagnosed internal bleeding for THREE days before they discovered it (said it was atypical because my abdomen did not harden - while I said "goodbye" to my three year old son and husband and family - then - miraculously on its own - the bleeding stopped.
The ovary stab was not discovered until some years later. I was shocked. My good surgeon said there is no way that doctor did not know he did that accident. (Also explains why the bad surgeon said to me a 26 yr old young mama wanting more children while I lay bleeding "we must do a hysterectomy or you will die" and I said NO and then the bleeding did stop. He wanted to cover up his terrible deed.

Flash forward to these years later with the monitored (cancer marker) cyst.
I go in for routine ultrasounds with the internal wand every six months, no matter what, to monitor latest abnormal cyst production because of my bad history with problems.

I believe that the cyst disappeared on its own because my lifestyle changed. I always was a healthy eater, don't smoke, etc., But my marriage I thought would last forever unexpectedly and terrifyingly ended. I stopped eating and began hiking everywhere. Ended up in the best shape of my life. What was drastically cut from my diet? Meat, coffee, processed foods of any kind. Also - the constant stress of trying to make someone happy when they are so unhappy on the inside. All of that gone in one fell swoop.

Fresh vegetables, no refined sugars, no coffee, no refined flours, no meat. I really think I "detoxed" my body.
I am now back to drinking coffee, enjoy fresh chicken breast, and now I am fighting the cervical pre-cancer.
I am going to work hard to make myself better again.
Beware the dangers of too much stress on your body. And putting so-called "good meals" in it that are composed of junk elements. Why refined processed rice? Why not choose whole grain rice that has not been refined? It's a bit of work to read labels but you and your family will benefit in the long run.
Now, if I could only quit coffee again!
Victorian

 
Old 03-28-2009, 10:27 AM   #13
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Re: Cyst golf ball sized/Scared and Unsure What is Going On

Hi Victorian,

How about that ! Our challenges in life have served to make us healthier. Go figure. My goodness what an absolutely horrible experience for you to go through in the hospital. Really awful. There are far too many hysterectomies being done, even in this day and age. Sometimes they are necessary but this is the exception rather than the rule. I believe in minimally invasive surgery. In addition to having my oopherectomy at the end of April (I think this is how you spell it), my surgeon gave me the option of having my other tube "tied". Although this indeed would be convenient for birth control, I decided to say no to this. I do not want to ask for another problem and I have heard that some women experience Post Tubal Ligation Syndrome due to decreased blood flow to the ovaries after ligation. I want to cherish my remaining ovary as much as possible so that it keeps me healthy so I told her to take a look at it, blow it a kiss for me and close me up.

Yes I too believe that unprocessed food is a definite requirement for health and I have never eaten too much of this (I credit my Mediterranean heritage for this). My problem has always been serving sizes and dairy foods like cheese (which I love and which has lots of fat). After reducing my serving sizes and almost cutting out cheese (I still eat a little) in addition to exercise (walking) I dropped the weight. Reading labels is no problem for me and I shop carefully. I do not trust corporations to do what is best for our health so I make sure to inform myself about what I am putting into my mouth. I also don't smoke and never have (I think it should be illegal .. something that kills and maims millions of people should not be allowed to be manufactured legally in our society). Like you I LOVE my cup of coffee in the morning though and I will NEVER quit this no matter what. Some studies show that coffee drinkers live longer so who knows.

My cyst is quite large, 8.8 x 8.5 x 7.4 cms .. the size of a grapefruit. It has also grown somewhat in the year and a half of ultrasounds that I have had (like you, six month ultrasounds and I had the CA-125 done a little after discovery of the cyst .. I am due for another just before the surgery). I therefore doubt that at this size and with its current behaviour it will suddenly disappear, although I have had this hope for some time now. I credit this cyst to the use of birth control pills for 20 years. I have never had children so I was on BCP's for two decades without interruption. I would therefore not be surprised if they caused a problem with one of my ovaries and should thank my lucky stars that it was not both. BCP's also caused my uterus to begin to bleed uncontrollably (endometrial atrophy) which scared the crap out of me. After I stopped them, everything went back to normal and I was left with this cyst. I sorely regret having trusted the pharmaceutical companies and my doctors' advice that BCP's are completely safe. If anyone doubts this, they should follow some of the liver adenoma threads on these boards. What's done is done and I must move on.

Best of luck to you Victorian and to you too dc momma.

Estria

 
Old 04-07-2009, 09:13 AM   #14
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Re: Scared and Unsure What is Going On

Thank you so much for the information. For the last few days - I have FINALLY been living without pain which is amazing. I almost forgot what it felt like. I am scheduled to get the CA-125 done though I am not sure how helpful it will be since I am 33 and still in my "child bearing" years. Still - I will do it and get it on the books.

I am still having odd symptoms though. Feel tired and achy though that could be due to some recent stress (hubby lost his job). The one positive sign is that I have lost the bloat! I looked like I was 4 months pregnant for a while. Now - I am finally looking normal.

From what I have read - that is a good sign that the bloat is leaving. I learned that women with more "serious" conditions usually never lose that bloat - which makes sense.

One thing that this has forced me to do it re-evaluate my eating habits. I have not been the most "sensible" eater lately. I have been eating small portions but mostly processed foods like frozen dinners for lunch. I have decided to go the "healthy" route. I am limiting my processed food intake. I am trying to take in more fiber and veggies. I am also limiting my cooking in plastic containers - using ceramic plates instead. Also - I have started taking a multi-vitamin.

Once my husband gets back on the job track - we have discussed me getting off birth control for good. I have been taking it non-stop (well took a 2 year break during the birth of my son) since I was 16. I am 33 now. I want to stop putting my body through this "synthetic process".

The last step is the laparoscopy for the endo and cyst. I am so scared about this because I am not a big fan of surgery but will feel good when the results are clear and in front of me. Until then - making these food changes and exercising more is a step in the right direction regardless of the outcome.

Please keep me posted on your progress. I think of you all a lot.

(((HUGS)))

 
Old 04-07-2009, 05:41 PM   #15
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Re: Scared and Unsure What is Going On

I'm so glad the swelling is going down and that you are not feeling pain any more! YAY!!! I've been reading this thread, but since I didn't have much to add about ovaries, I didn't have much to say. Today I get to celebrate with you!

 
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