8.5cm complex, separated ovarian cyst - 26yo. Scared!

Posted , 9 users are following.

Hi all! I guess I am writing this more for reassurance and comfort, as sometimes it helps to get things out. I'm just under 27 years old, and here's my experience so far with a complex ovarian cyst. 

Two weeks ago I went to the ER after suffering from severe pain on my right side. Blood work was normal, but a CT scan revealed a 7cm cyst on my right ovary. The ER doctor and nurse told me to follow up with my regular gyn, who would most likely monitor it and complete ultrasounds every 6-8 weeks to check for growth. They said it was not an emergency unless I suddenly developed major, excruciating pain. They both said that ovarian cysts sometimes have to be removed, but ones like mine (the said the shading on the CT scan looked like a normal cyst) should be fine and probably go away with my cycle. (I've never had any issues previously. In fact, just two weeks prior to this happening, I had my annual appointment with my gyn, and all of my tests came back normal. I have no family history of ovarian cancer or cysts.) 

Three days later I met with my gyn, who promptly scheduled me for an ultrasound. She seemed concerned about the cyst due to its size and said she thought it'd definitely have to be removed, since it was already so large and because of the fact that I I have it while being on birth control (birth control, she said, is often prescribed to lessen the change of developing cysts. Go figure...) I became nervous after this, because the ER doctor and nurses didn't seem concerned at all, but my gyn did. 

The next day I went for both my regular and transvaginal ultrasound, which returned the following results: 

"8.5cm Complex cystic lesion with septations and what may represent a small papillary excrescence. No flow is noted to the solid component of the cystic portion. The appearance is nonspecific and both benign & malignant etiologies could give this appearance. Its size however is concerning." 

Upon receiving those results, my gyn referred me to a gynecological oncologist; my gyn said that due to the fact that they cannot tell whether its benign or malignant, a gyn onc. must be the person to handle it. 

My consultation with the gyn onc is on Tuesday, and while I'm trying to stay calm and optimistic, I've been a wreck at the thought of cancer. Of course, I Googled...and I read about so many characteristics of complex malignant cysts that seem to match up with mine, which scared me. The fact that the cyst seemed to grow so much in just three days between tests (1.5 cm) is frightening too...although, I'm wondering if there could be a discrepancy between a CT scan and an ultrasound? I am nervous to see how much it will have grown when I meet with the gyn onc. 

The hardest part has been the waiting - I just want to know what it is. It's been a long couple of weeks. At times, I had myself worked up into a frenzy of worry, which only made the pain worse. My gyn has been fantastic through this, reassuring me to just take it easy and try not to worry too much...but it's easier said than done. Meeting with a doctor who specializes in cancer treatment and practices in a cancer hospital is just a scary thought (but also comforting, since God forbid it is cancer, I know I'll be in good hands...) It doesn't help that I've also always been a hypochondriac smile 

I guess I just needed to get that out...the thought of cancer is just making me a nervous wreck. Thanks to anyone who took the time to read this...I'm not sure how much sense it makes. But it felt good to get that all out!

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  • Posted

    *Septated
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    • Posted

      I had a 7 cm cyst and both ovaries removed last August. I honestly don't think they can tell anything until is is removed and sent for testing. Mine was not cancerous and I would doubt that yours is either. Waiting is the worst part the surgery was a breeze in at 11 home by 1 so don't worry about that. Take care hope you feel better and get answers soon!
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    • Posted

      Thanks for the encouragement, Sheri! I'm so glad that your surgery went so smoothly!

      In my case, I am praying that if they have to remove anything besides the cyst, that it's just one ovary instead of both (my boyfriend and I would like children someday.)

      Thanks again!

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    • Posted

      Hi Sheri. Have you had any repercussions since you have had both ovaries removed? I am in menopause so my gyn tells me nothing with happen, but I have read that the ovaries still play a hormonal role even after menopause. May I ask your age? I'm 53. Thank you.
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    • Posted

      Hi Gillian

      My replies keep getting pulled not sure why?

      Thx for sharing with us all, and your natural path is correct. My one cyst is too large to take just the cyst out and leave the ovary.

      I spoke to someone Tuesday night about the cyst that has experience she recommended so supplements and foods so I will try this.

      I would love to hear what your natural path says on your full visit.

      Chow Robin

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  • Posted

    Hi there,

    I am going through the exact same cyst situation, except mine is double the size of yours and I am 48. I too went through family doctor, gynocologist and gyno-oncologist. 

    Two weeks ago, I got a call that the gyno-oncologist will remove the cyst. He feels there is a 20% chance that it is cancer. I have no family history, and my CA-125 test was 16 (anything below 34 is good). They are basing their 20% chance on how it looks (solid component and septum). 

    I live in Canada and have to wait until June 30 for the surgury. I am on pins and needles as I have 5 kids. As I sit here typing this, my pants and belt are undone because I feel so bloated. I know how you feel about the agony of waiting for an answer. 

    There is nothing we can do to change the situation, so we have to keep our minds busy. I have Googled everything that can be Googled, so I have stopped. Sometimes I feel better after Googling, but most of the time I feel worse. 

    I just want you to know that you are not alone in this. Please let me know anything knew that you encounter. When will you have surgury?

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    • Posted

      Hi Michelle,

      So sorry you're going through this as well! I know the bloated feeling all too well. Luckily, my cyst is not visible, but every once and a while, the bloating feeling comes and then the pants get unbuttoned >_<

      i have my first consultation with my surgeon this tuesday (i haven't met with her yet) so i'm assuming i'll know then when my surgery will be. i'm assuming she'll want to run some other tests beforehand, though.

      june 30th seems like a long time to wait, especially since you've already met with your surgeon and had testing done. i pray that you are as comfortable as possible up until your surgery! i am lucky that i am able to see a gyn onc just a bit over 2 weeks after my initial diagnosis - originally it would have been a 3 week wait, but my gyn referred me to a  different surgeon to reduce the wait (because of the pain i was experiencing then.) still though, who knows after that how long i'll have to wait. unfortunately, dr. google told me that many women have long waits in between diagnoes and surgery sad

      best of luck to you, and thanks for the kind words! i="" have="" my="" first="" consultation="" with="" my="" surgeon="" this="" tuesday="" (i="" haven't="" met="" with="" her="" yet)="" so="" i'm="" assuming="" i'll="" know="" then="" when="" my="" surgery="" will="" be.="" i'm="" assuming="" she'll="" want="" to="" run="" some="" other="" tests="" beforehand,="" though.="" june="" 30th="" seems="" like="" a="" long="" time="" to="" wait,="" especially="" since="" you've="" already="" met="" with="" your="" surgeon="" and="" had="" testing="" done.="" i="" pray="" that="" you="" are="" as="" comfortable="" as="" possible="" up="" until="" your="" surgery!="" i="" am="" lucky="" that="" i="" am="" able="" to="" see="" a="" gyn="" onc="" just="" a="" bit="" over="" 2="" weeks="" after="" my="" initial="" diagnosis="" -="" originally="" it="" would="" have="" been="" a="" 3="" week="" wait,="" but="" my="" gyn="" referred="" me="" to="" a=""  different="" surgeon="" to="" reduce="" the="" wait="" (because="" of="" the="" pain="" i="" was="" experiencing="" then.)="" still="" though,="" who="" knows="" after="" that="" how="" long="" i'll="" have="" to="" wait.="" unfortunately,="" dr.="" google="" told="" me="" that="" many="" women="" have="" long="" waits="" in="" between="" diagnoes="" and="" surgery="" sad="" best="" of="" luck="" to="" you,="" and="" thanks="" for="" the="" kind="">

      i have my first consultation with my surgeon this tuesday (i haven't met with her yet) so i'm assuming i'll know then when my surgery will be. i'm assuming she'll want to run some other tests beforehand, though.

      june 30th seems like a long time to wait, especially since you've already met with your surgeon and had testing done. i pray that you are as comfortable as possible up until your surgery! i am lucky that i am able to see a gyn onc just a bit over 2 weeks after my initial diagnosis - originally it would have been a 3 week wait, but my gyn referred me to a  different surgeon to reduce the wait (because of the pain i was experiencing then.) still though, who knows after that how long i'll have to wait. unfortunately, dr. google told me that many women have long waits in between diagnoes and surgery sad

      best of luck to you, and thanks for the kind words!>

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    • Posted

      Hi Michelle

      I'm in Canada too, in my 50's , so post menopausal. My cyst has been 6cm for a year now. I am not sure how long it's been there had an ultrasound done 10 yrs ago just before peri menopause and it wasn't there.

      I've never had pain or cramps they stumbled over it when doing an USound for my nausea and stomach issues.

      I have never heard anyone talk about shrinking it or dissolving it. This is what I'm trying to do with holistic ways.

      Robin

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    • Posted

      Hi robin, another "Canuk"! :o). I am going to approach this holistically as well. I would be interested to learn what you're discovering in your "journey". Has your gyn not recommended that your cyst be removed? It seems to be all the rage where I am, although it has only been men who have recommended this. I am now seeking the opinion of female health practitioners.

      Michelle, it looks like where you are there is not a long wait list. As I mentioned before, I am scheduled for surgery in October! I'm going to see if that can be bumped up, or go elsewhere (I have a few choices I think as I am in Toronto). The question remains, one ovary or both?

      Hang in there.

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    • Posted

      Hi there (Toronto)

      My post got held so it may not get to you , I will be brief here.

      My obgyn says I should remove cyst and ovary. My GP says too, but it hasn't grown in almost a year so why should I jump on doing surgery. It is a 6cm simple cyst they usually don't take out cysts that are simple and 5cm or less.... mine gives me no pain we stumbled over it .

      I will decide next ultrasound in July.

      What symptoms have you got from yours .

      So you might get 2 replies from me ?

      Robin ( Vancouver) smile

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    • Posted

      Hi Robin,

      So I obtained some clarification yesterday from the original gyno that I saw about my fibroids. I have one simple cyst around 3.2 cm...which is of no concern to him at all. The other is only 3.8 but is septated, so he referred me to the laprascopic surgeon ob/gyn doctor who scared me by saying my cyst was 7 cm and anything could be malignant so take out both ovaries just to eliminate risk. My original gyno doesn't seem to have the same guns ablazing attitude - he said I shouldn't be worrying about it, but a follow up scan in early June was advisable. If there is no change or there's growth, then taking it out along with the ovary would be strongly advised because these types of cysts can become malignant over time.

      I have sluggish bowels and occasional aches in my pelvic reason and lower back, but I have always attributed this to my fibroids and "thicker than normal uterine lining." It's all very confusing. I'm taking meds for IBS just to keep things moving, but honestly, I want to stop and just get everything sorted out. 

      I am going to a naturopath tonight and plan to see a chiropractor next week as I have read that both can be very helpful in both fibroid and ovarian cyst management - and just overall health.

      Nice to read from a fellow Canadian! If I were you, I might seek out the advice of another ob gyn and if that person also said removal is advised, then I would probably go for it. Somehow I just feel that a female health practitioner might not be so quick to cut everything out, but perhaps I'm being sexist. I was not impressed with my surgeon who said point blank "ovaries serve no purpose after menopause". I do not agree with that opinion. If they served no purpose, our bodies would eliminate them! 

      Gillian

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    • Posted

      Hey Gillian

      I have done my research and spoke to many including an obgyn that has a book out about menopause. Don't think we can mention names. This is why I have been monitoring it for 10 months. I do go to acupuncture and like I mentioned eliminated high estrogen foods. I did have a hormonal panel blood work done and CA125 done along with my regular Usiunds every 3 months. My obgyn said if the cyst was smaller she would not have a problem leaving the ovary in. Although mine is non cancerous causing no pain it is still too large to play around with and taking 1 ovary out will not effect me even if I were of childbearing age... which I'm not lol

      I have been through 3 rounds of ultrasounds to see its not shrinking so most probable I will schedule surgery at next follow up in July which would be a Sept /Oct date for surgery.

      Have you had all the tumor markers done and CA125?

      Yes males do tend to say take it out, but so has my female obgyn too. She told me if it was 3-4 cm she would not worry and get an ultrasound 1x year.

      You didn't mention what symptoms besides the lower back and cramping is this it?

      I don't even have that smile

      I'm glad your seeing a natural path , I gave up on meds for every ailment. Proper food lifestyle , exercise weight loss if too large and a great mental state of mind will get you farsmile

      Robin

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    • Posted

      Hi Robin,

      I noticed that I have started to feel bloated in my lower belly again, so maybe that is due to the cysts. Besides that, no other symptoms. I don't know if I feel pain during intercourse because...ha ha....I'm on my own and pretty celibate these days (sounds pathetic, I know).

      I just had a brief consult with the naturopath. She said there's lots that she/I can do to help. She said she believed that any removal of an organ disrupts the natural energy and flow of the body so yeah, taking both out might not necessarily the best option if one ovary is perfectly fine. I'm going for a full assessment (1.5 hours!) in two weeks.

      Weight is going down - that was my plan when I moved - to get back on a healthier track. It has crept up slowly over the past 5 years, and I look in the mirror now and think "who is that chubby lady?" It's not me!!!

      I have not had any blood tests - ob gyn says too many false positives. I could have one done if I wish. I am going to see a new GP tomorrow (my gyn is back in my old town - not going back there) and will discuss further testing, including blood tests.

      That's it for now! Have a good night :o)

       

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    • Posted

      Hi Toronto lol

      Thanks for the info. I was at a mini presentation with a well known author from Canada tonight.

      She talked to me and gave me tips on food choices to which I am doing .

      A few more I can push more on myself.

      She feels you can shrink it , so I will try my best to follow her guidance.

      As for the blood work I was told that if you get them in child bearing years they can be not as accurate but they do show some important factors. If you get the tests post menopause they are 99.9% accurate only because tests are never 100% accurate!

      I would really appreciate any feedback you can send my way after your full consultation .

      I do agree about the organs and removal but I also agree that my cyst is too large to play around with. Mine over powers the ovary its that large . I was told it is like a tennis ball eating up a walnut . Cyst- tennis ball

      Ovary- walnut.

      Vancouver smile

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