Large COMPLEX ovarian cyst / tumor

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I will soon be 29 years old. I have a large complex cyst in my left ovary that has the potential to be a tumor. It is 9.4 x 7.6 x 5.6 cm (208ml)

The cyst was first discovered in my left ovary back in 2013 (almost 7 years ago). It was much smaller at that time and I was told it only required monitoring and to have a follow up ultra-sound done within the next 3 years.

I had an ultra sound done in 2015 - which didn't come back with any concerns. So I assumed the cyst was either gone or completely benign and just went about my life, not really thinking about it.

Fast forward to today.

I have not had a regular period in at least 2 years. Pretty much no periods at all. At most; very slight spotting every 6 months or so. My doctor said this was completely normal due to the birth control (lolo) I'm on and have been taking daily for approximately 5 years now.

Last month I made an appointment to see my doctor after doing some research online which lead me to discover polycystic ovarian syndrome. I have every symptom it describes so I was eager to have another ultrasound done and some bloodwork to determine for sure. If I did have PCOS I wanted to begin treatment right away and was excited to finally have something to explain my adult acne, hair thinning, lack of periods, etc.

My bloodwork came back pretty much inconclusive due to the birth controls affect on hormones levels. Except that my estridol levels are low and prolactin levels are high. My doctor pretty much dismissed my blood test results and said to have follow up blood work done just to monitor the prolactin levels.

My ultra sound did not show multiple cysts like polycystic would imply. Just one large avascular complex cyst with small mural solid component(s) and further characterization with MRI and gynecologic consultation required.

I was informed of the results in a follow-up appointment with my family doctor on January 15st. I have to wait till March 21st for an MRI. And I am still yet to get an appointment with a gynecologist despite my doctors urgency in her request.

So what do I do while I wait? Any and all the research I do only scares me more. And I am much more aware of the discomfort it is causing me physically. I'm sure I just ignored it before and that it has been present for a while but now it is not as easy to ignore. I often have a strange leg pain/discomfort in my left leg. Back pressure and discomfort. Substantial bloating around my mid section.

And I have so many questions. My whole reason for sharing my story was to hopefully get some answers. And hear of others similar experiences.

Is it safe to continue with normal physical activity with a cyst of this size? Or should I take it easy to avoid torsion or rupture till I can have surgery to have it removed?

Will surgery likely be able to remove just the cyst/tumor or will they have to take one or both of my ovaries?

Has anyone had a large but benign ovarian tumor removed and went on to carry a pregnancy to term?

If my tumor is malignant does that mean I likely have less then 5 years to live?

Is there anything I can do while I wait to have an MRI done/surgery?

Is it normal to wait weeks to get in to see a gynecologist?

Thank-you for taking the time to read my story.

Nickki

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9 Replies

  • Posted

    Hi Nickki,

    That sounds terrifying. I'm so sorry. I also have a dermoid on my ovary about 5cm as of a few months ago. I've also had it for a while and am now 48. Some doctors are also telling me to remove it and several say they can spare the ovary. I also know of a woman on these boards who said she had a 7cm dermoid and they left her ovary so I think it's doable with a good surgeon to save your ovary even with a large dermoid though one doctor told me they'd have to maybe peel off a few ovary cells when they separate it and I might have hormonal issues but the ovary should bounce back. I'd think at your age it would bounce back for sure. Another surgeon said she'd leave some of the dermoid behind to spare all of the ovary but then the first doctor said that would allow it to grow back. So not sure about that part. But if there's nothing on the other ovary there's no reason to remove it from what I've heard. A lot of times dermoids are made of bone, hair and the building blocks of babies that don't happen, that's what they told me. Sometimes you can even have them from birth tho I think I developed mine like you did later. It doesn't bother now me except mentally but then I do have a large fibroid as well 😦 that I think has it pinned down. But torsion is always an issue, especially at 7cm or more. I think you can for sure still have kids even with one ovary. And I don't think there's much you can do while waiting. And yes doctors suck esp if you are a new patient you often have to wait to get in, but you can try to go on a waiting list. I hope the doctors help you with this soon!!

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  • Posted

    Aw lovely i really feel for you. I was in exactly the same position except when my complex cyst was found it was 9cmx12cmx10cm. I was referred and waited a couple of months for MRI too but i did have some blood tests to check for ovarian cancer, tumour markers etc. The important blood test was CA125. 18 months later i had keyhole surgery to remove the cyst and it had more than doubled in size, they saved my ovary but had to convert to open surgery to get the cyst out.

    My advice is to build a relationship with the consultants secretary, tell her that you can do a cancellation appointment if necessary.

    good luck

    jen

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    • Posted

      Thank you Jenny so much for sharing.

      I was thinking I was the only one having to wait so long for answers and treatment. Everything I read online stresses that early intervention is key in providing a better outcome. And everyday I am scared it is is just growing and causing more damage and lessening my chances of keyhole surgery and possible fertility after surgery.

      And its at a size that I certainly can notice. They say at 23 weeks a baby is the size of a grapefruit. So this cyst/tumor is like being in the 2nd trimester of pregnancy, only just on one side. And its starting to feel like it. My organs feel very rearranged and compact. I have shortness of breath, ever increasing cramps and intermittent sharp pressure type pains. I can't imagine having this go on for another year. And having this cyst/tumor possibly double in size during that time! That sounds like ABSOLUTE hell! So props to you for getting through it.

      It is a relief to hear that despite the size of your cyst they were able to leave your ovary intact. That gives me a little bit of hope.

      But having the open surgery I imagine made recovery a lot longer, and a lot harder? As well as leaving a much larger scar behind?

      I requested to be on a waiting list to get to see a gynecologist sooner, but was told they do not have a waiting list. I spent a few hours waiting at the hospital hoping that would speed up the process, but after hours of waiting I still left with the same gyno appointment set for the end of next month.

      And my family doctor refuses to give me the CA-125 blood test. Claiming it is only used as a follow up after ovarian cancer has been diagnosed and is not to be used to diagnose or rule out ovarian cancer. And may only be given prior to diagnosis if someone has a family history of ovarian cancers. Which i thankfully don't. But I would really like to have the blood test done regardless. It is very difficult just sitting here and waiting, and want to be doing what ever I can in the mean time.

      Thank you for sharing your story though and giving me some hope.

      I appreciate it and it has helped me more than you will ever know.

      Nickki

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  • Posted

    hello

    im so sorry you have this and are worrying no end i know exactly how you feel. i also felt that last year.

    i had a huge cyst on my right ovary on i was put on a 2 week cancer pathway which is the urgent pathway from diagnosis to treatment within that 2 weeks i had blood tests done which test if it was risk if being malignant luckily this came back low. i then had an ultrasound scan which showed it to be a fluid filled cyst measuring a whopping 25cm i looked pregnany believe me. i was then referred to gynae who i saw by the end of the 2 week process.

    they scheduled me in for surgery. as it was fluid filled they were able to do key hole surgery by draining it first and pulling out the empty sac through thw small incision. they drained 1.5litres of fluid from the cyst. due to the size my right ovary and right fallopeon tube were removed also.

    recovery was fine. sore for a week or so then felt pretty normal. ive noticed no change in my body have the ovary and tube removed. ive gained a big of weight which i blame on hormones due to this. and finally it came as a massive shock but 2 months post surgerh i found out j was pregnant xx

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    • Posted

      Thank you Amy for sharing!

      Your story gives me hope. Key hole surgery and fertility left in tact is my best case scenario, and it helps to hear that it is possible.

      After surgery did you have to do hormone replacement treatment due to the loss of the one ovary?

      How long from discovery of the cyst till you had surgery to have it removed?

      How was recovery after surgery?

      And do you recall any blood work results for hormone levels pre-surgery? My estrogen is very low, and my antigen and prolactin levels are high. I'm very curious to know if this is normal due to the cyst or if I have to worry about additional complications such as premature ovarian failue.

      Thanks so much for taking the time to share your story with me Amy. It certainly has helped reinstate some hope for me.

      Nickki

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  • Posted

    Thank you all soo incredibly much for your responses!

    Every other forum I've been reading are stories of cysts or tumors leading on to ovarian cancer and the stories are written by a surviving loved one. And if it is someone sharing their own story they end up with a full hysterectomy and a year of recovery time or chemo and repeat surgeries.

    Overall... not very reassuring.

    I am so glad I resorted to making my own post. Your stories have given me hope! The thought of a simple key hole surgery and a successful pregnancy later in life is the best case scenario I am hoping for. And to hear it actually happens helps a lot.

    I finally have a gynecologist appointment March 31st and then my MRI booked for March 21st.

    Tomorrow I will go see my family doctor and request a blood work requisition form to check prolactin and other hormone levels and most importantly CA125. As I think that would be something important I should be doing while I'm waiting. Kind of surprised and disappointed my doctor didn't suggest that as the next step already.

    I'm not sure if it is just because I am more aware of it or not but it feels substantially bigger and more uncomfortable and occasionally painful. I look like I'm pregnant. I'm short of breathe. My leg intermittently aches or feels like its asleep or a nerve in my groin is pinched.

    I'm half tempted to go into the hospital complaining of severe pain for the chance that it may speed things along and get to surgery sooner.

    Think it would work?

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  • Posted

    hey MissANG

    I'm so sorry to hear about your situation. I recently discoverer (through a routine ultrasound) that i have a large complex cyst on my left ovary. I have a CT scan scheduled on Friday but nonetheless my gp reckons it'll need to be surgically removed. I'm 29, like you.

    i have bloating, back pain, the worst period pain when i have mt period. I'm terrified! Hope that we both get looked after and get back to normal soon. x

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    • Posted

      Hi Holly!

      Thank you so much for taking the time to share with me.

      How did your CT scan go?

      Have you had any blood work done to check hormone levels and CA-125 tumor marker levels yet?

      My doctor wont give me the CA-125. But I have had blood work and know that my estrogen levels are very very low, and antigen/testosterone and prolactin levels are high. I'm curious to know if anyone else has experienced this along with a complex cyst requiring surgery.

      I'm also interested to know the time frame between discovery of complex cyst and removal. And type of surgery required.

      Did you already have a gynecologist in place prior to your ultrasound?

      I wish I would have. I still wont see one till the end of March. And the waiting is awful.

      Hopefully your CT scan went well though.

      Would love to hear back from you. This is a very scary situation to be in. And it has helped me tremendously to know I am not alone. (Not that I would ever wish this upon anyone) But I find sharing real life stories and outcomes with people going through similar situations and experiences is far more insightful then the very grim google search.

      I'm here for you Holly and I wish you all the best in over coming this temporary obstacle in your life.

      Nickki

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  • Posted

    Glad to see this post. Just got a diagnosis today of a left sided complex cystic lesion by ultrasound. Five months ago I started having belching and gas with pelvic bloating. Two months ago, the bloating spread to my abdomen and has gotten to the point in the last couple weeks that it's hard to breathe in deep. Not gonna lie, I'm panicking a bit. I was so panicked inside I forgot to get the size. I have all the bad things swirling around in my head right now. Especially, because I had a 9mm calcified cyst on my right ovary 7 months ago found by US (that hadn't grown from 6 months prior). Now I'm panicking that it became cancerous and spread to my left side. Especially because they couldn't view my right ovary in this ultrasound. My first response is, "Take them out! I want them gone." I know the ovaries do many things and it's always best to leave them in, but I DO NOT want to worry about this forever!

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