10 cm cyst on left ovary- worried sick about surgery

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Hi to all of you wonderful people on this forum who reads this..i just really have to let it all out somewhere..

Im a 27 yr old female with no children having been diagnosed with ovarian cysts. Its a mass originating from my left ovary that in total measures 10 x 7 cm as seen on both ultrasound and a CT scan. In august the cyst was 4 cm or so, and has since then growed to present day size.

I saw a doctor this august due to a sudden pain in my lower abdomen (menstrual cramps ish). The pain lasted maybe 2 hours and i normally would not have seen a doctor due to it, but a colleague recommended me doing so, since she had had a cyst burst previously, just to rule it out. To think that at this point i didnt even know what a cyst was! I saw a stressed out doctor and was examined via ultrasound, nothing out of the ordinary was found- but alas a 4 cm or so cyst. She told me that i most definitely didnt have endometriosos, since i didnt have "enough" pain and that the cyst would most likely dissolve on its own. She did however schedule a new appointment some months down the line to check. I left and since the pain subsided, didnt give it anymore thought. 

Since my check-up appointment 2 months later, where it was discovered that the cyst had grown to 10 cm, I have since seen several other doctors with varying opinions as to what kind of cysts it is i have. One of them said chocolate cysts and that i had endometriosis with 99 % certainty, the other, who is a cyst/tumor specialist said that he firsthand belives it to be a mucionous adenoma. They simply do not know, despite having had a CT scan. My bloodwork including CA 125 shows nothing out of the ordinary, and i have no family history of either cancer or cysts. I have been recommended surgery, which will take place within a matter of weeks. At my last appointment they informed me that they will try to drain the cyst and then excise it laporascopically. They do not however know the state of my ovary, i suppose the cyst blocks it out of view. Depending on how it all goes, there is a chance i may lose my ovary. I realize this is a viable scenario, but im just so chocked and scared.

I have honestly not had any symptoms of the cyst- prior to them telling me about it. Since they told me i have however become a lot more bodyconcious and imagine myself feeling all sorts of things. I have gotten constipated and i dont "dare" to have intercourse as im afraid it will feel different and all in all my anxiety has skyrocketed. Can it really be that you walk around with this thing not feeling it or anything? Many people seem to suffer pain and menstrual irregularites, of which i have had neither. 

I dont know what to think or how to feel. My main concern is fertility, as i very much desire starting a family in the near future. I also worry immensly about the effects of having an ovary removed- not only cause of fertility but general wellbeing. I dont want my hormones affected, changing me in any way, there is also the risk of something happening to the remaining ovary. My husband and i have discussed trying for a baby as soon as possible after the surgery to ensure that we have chance before anything else happens...im crying as i type this, because i always imagined that starting a family would be something happy- not a desperate measure like this. The possibility of losing my fertility has shaken me to the core.. i see pictures of friends babies on facebook or happy couples touting strollers and i think that i would rather die than face a life without children of my own. Lastly im also worried about recovery after surgery, pain, hormonal effects and all of it really. Me and my husband had planned a longer trip in the start of the new year, which feels like its been ruined by all these unexpected events. 

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1 like, 2 replies

2 Replies

  • Posted

    Oh Sam, Having a cyst removed  via laparoscopy, is not a hard operation at all. I had a bigger one removed last year, with very little pain, and a fast recovery. If they did have to remove the ovary, you'd be just as fertile with the other one, and should anything happen with the other one, they would offer to freeze your eggs. You're no more likely to be made infertile than anyone else, please don't see the future as all doom and gloom.x.

  • Posted

    Hey! 

    Goodness, I know exactly the spot that you are in and how worried you are. They found that I had a 17 cm dermoid cyst back in May about a week before I graduated. I was 18 then and 19 now! I know how frustrating it is that most woman who seem to get these are in the later stages of life. My doctors were shocked that I had such a big cyst for someone so young. I actually had the 17 cm cyst on my left ovary and I had another 5 cm one on my right that basically had three smaller cysts inside of it. I was referred to a gynecologic oncologist because they told me that there was a 2% chance that it was cancer. He wanted a CT scan to get a better look at the cysts and so I did that too a couple days before my surgery. My CA 125 levels all came back normal. I had surgery about two weeks after my ultrasound and I was terrified. They told me that a laparoscopic surgery wasn't an option in my case because it was too big and so they did a laparotomy instead. I have a 5 and a half inch incision! I hear that a laparoscopic surgery has a much faster healing time. I took 6 weeks to recover from them doing my surgery and I spent 3 nights/4 days in the hospital. They told me in the hospital that both cysts

    They told me that I may lose an ovary but that if I did, my other one would pick up the slack. After surgery though, during one of my follow up visits, my oncologist told me that I can't keep getting surgeries if they keep coming back so I should think about freezing my eggs. I'm not going to lie, I had nights during recovery where I would just lie in pain and cry, thinking about the children that I may never get to have. It is something that everyone (especially at our young ages!) take for granted. "Oh yeah, we were thinking about having kids soon" Some people don't understand how much some of us wish it were that easy! I also know that before surgery, my doctors would give me statistics and things and it never really helped. I had convinced myself that I was in the 2% for cancer and that I would lose an ovary. But honestly, and I wouldn't say this if it were not true, please know that the chances of you loosing an ovary are so very slim. The doctors that will be doing your surgery have studied for years and done this countless times. They are very good at what they do. 

    I would say that the most important thing is you need to like and trust the doctor who will be doing your surgery. I hated my first gynecologist and was actually thrilled with my gynecologic oncologist who actually preformed my surgery. He was one of the best doctors that I have ever had hands down. Actually, when they gave me some of the anesthetic through my IV and we went into the OR, I was holding on to being awake but then I looked over (I was lying on the surgery bed) and saw my doctors name tag. I knew that he was there (I hadn't seen him all morning, just pre-op nurses, my resident because I was at a teaching hospital, and my anesthesiologist.) and as soon as I knew that he was with me, I knew that he would take care of me and I let myself sleep. I had so much trust in my doctor that when I woke up and they said that everything went super well, I wasn't very surprised. I knew he would pull me through it and he did. Point being, make sure that you trust that doctor. And if you don't, or if you don't like them, its perfectly ok to get a new one. Doctors don't worry themselves over patients moving on to different doctors. They just want you to get the best care. 

    My cyst had hair, skin, and teeth in it. I know, it was pretty gross. But they didn't know that until they took it out. An ultrasound or a CT can only show so much and that's fine. I've found that I increase my anxiety if I try to analyze every single comment the doctors make about my imaging. Sometimes it's as simple as them not getting a good angle or something like that. 

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    I actually just had another ultrasound done and they said that I now have three new cysts. I am also looking at surgery sometime in late December or early January. I am devastated that my body has grown 3 new ones but I didn't choose it and now I just have to get through it as best as possible. My CA 125 levels are also normal this time and I am definitely not as scared for surgery. My new doctor even said that this one could be done laparoscopic! So that is a total blessing. But he also said that I could be looking at a surgery every year if they keep coming back like this. 

    But please, if I missed anything, if you want to know more about what I went through or what it was like, or anything like that just ask. I'll answer any questions you have and I hope to bring you some sort of peace. I actually just made this account so that I could reply to you and I don't know if messages are a thing on here? But if you would like to talk more personally, I would be happy to message you. 

    I wish you the best with your surgery and everything that is going on! 

    -Rosemary

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