Post # 1
So a few weeks ago now I had my mirena removed as I thought it was to blame for my excruciating ovarian cysts. I had it taken out and got an ultrasound to kind of see what was going on in there. Instead of the typical cysts they normally see associated with the mirena, I had bilateral “complex” cysts, which I had to look up to see what that meant.
This had the clinic doctor concerned and ovarian cancer was suggested, much to my terror, and so I followed her recommendation to follow up with a regular gyn a few weeks after that. She looked at my previous ultrasound and suggested endometriosis as a diagnosis, although I don’t feel like I have any symptoms of that, but couldn’t give me a definitive diagnosis. Instead she wants me to wait until the end of March to get another ultrasound and then proceed from there.
since cancer isn’t off the table yet, I am a complete wreck and have spent the last few weeks basically expecting to hear news that I’m dying, and spending too much time online. I don’t know if I can wait until the end of March just to be told they still don’t know.
Is it it unreasonable to get a second opinion? Or to demand a biopsy so soon? I’m just so freaked out. I’m only 28, I’m unmarried, have no kids, and being faced with my own mortality is not sitting well with me.
Any bees with complex ovarian cysts that turned out to be nothing serious? Heck, endo as bad as it is, would be a welcome diagnosis at this point.
Post # 3
wendymoiraangeladarling : I think the site ate my thread? Sorry if this is a duplicate.
I had a mucinous cystic tumor on my ovary about 10 years ago (I believe these are considered complex cysts, although may be different from what you have). I had almost no symptoms, except for a little pain that wouldn’t go away. My doctor did a precautionary ultrasound and there it was! It was about the size of a small grapefruit.
Do you know if yours if filled with fluid? That is usually a great sign, and they should have been able to tell on the ultrasound. Because mine looked like it was fluid filled, my doctor decided we would wait and see if it got smaller with birth control. It didn’t, and so about 7 months after finding it, I had it surgically removed. They only found out that it wasn’t a big functional (normal) cyst after they removed it and biopsied it. It was benign, as are about 75% of the types of cysts I had. It was fairly uneventful, except for the months of waiting, so I feel your pain.
I know it’s difficult to wait. Try to relax and trust your doctors! They see these things all the time, and I assume if it was something that truly alarmed them, they wouldn’t take a “wait and see” approach. Good luck!
Post # 3
josie7 : I don’t believe that they’re fluid filled, at least the doctors haven’t said that they are. The only word has been complex, and that I have one on both ovaries. I can’t be on estrogen based hormones to even potentially shrink them because I’ve had a stroke event in the past.
I keep telling myself that if they were truly worried they wouldn’t wait, but I still left a message for my doctor to talk me down off the ledge. But I’m glad that there are potentially benign types of complex cysts.
Post # 4
wendymoiraangeladarling : I think “complex” can be so many things. I don’t think it’s a bad thing to go back and ask your doctor some more questions to help ease your mind, and to help stay off the internet. Although I know it’s tempting! I also did a lot of reading on cysts when they found mine, and from what I found, most ovarian cysts are benign, especially before menopause. A lot of doctors take the wait and see approach because a lot of cysts will go away on their own. All women get ovarian cysts. Seriously, almost all of us. It’s just that most go unnoticed or untreated because they are usually very harmless.
I know it’s frustrating that you’re one of the ones who has a more complicated one, but looking back, I’m sad because I spent so much time worrying and despairing over nothing. Lots of complex cysts are benign, try to stay calm and make sure your ask your doctor all of the questions you may have!
Post # 5
wendymoiraangeladarling : most ovarian cysts are benign:
I’ve had them repeatedly, along with ruptured cysts. They can be quite painful when they rupture, but other than that I haven’t noticed them other than being told we have to watch their growth.
The odds are in your favor, but I still think you’d feel better to hear this from your doctor’s office. So don’t be afraid to call again and be specific about your concern- ask if they are waiting because they’ve determined it’s not urgent.
Post # 6
A few years ago I was complaining of pain and I was sent for an ultrasound to check the placement of my Paraguard IUD. It was fine but they told me that I had a “mass” on my right ovary and had to return to the office urgently. The doctor told me that it was a complex cyst and that I needed to see a gyn surgeon. I consulted the surgeon and she said she wanted to repeat the ultrasound after some time. When I had that follow-up ultrasound, the cyst had vanished. Just try to relax. These things come a go.
Post # 7
wendymoiraangeladarling : I understand your concern bee, but these cysts are very usually benign. I would push for a ca125 blood test, this is a tumor marker test. I have a dermoid ovarian cyst which is now 4cm, and will eventually need to be surgically removed as it is a solid mass and wont go away on its own. I had a ct scan and a ca125 blood test which confirmed it was a benign dermoid as per my fertility specialist’s suspicions. I had a huge dermoid cyst removed many years ago, so was really disappointed when I found out another had grown on my remaining ovary, I lost most of my other one due to the sheer size of it when it was discovered.
Its likely yours will need to be surgically removed, but if they are very small they may not rush to remove them. But as far as I know complex cysts dont go away on their own as they are a mix of fluid and solid.
Sorry your going through this worry bee, but honestly, these cysts are usually nothing to worry about, but I would push your doctor for the ca125 blood test to put your mind at ease.
Post # 8
I have complex cysts on both of my kidneys. Usually when they refer to them being complex, it means they have solid structures inside the cyst and not just filled with fluid. In my case, I have calcifications in my cysts.
The chance that these would be cancerous is pretty low. I’ve never coded a cyst that turned into a malignancy- not to say that it doesn’t happen but it’s pretty rare. Depending on the type you have, yes, some do require surgery because they can grow so large causing twisting/torsion of the ovaries and can block the blood supply. If you do have endometriosis then it is possible it’s a chocolate/endometrioma.
As PP mentioned, most doctors do the watch and see route because a lot of these things do disappear on their own. I code radiology and do lots of follow up ultrasounds and most of the time they go away. Sometimes they correlate with the patient’s menstral cycle. Other times they chill there but never really cause the patient any problems.
Post # 9
I’m feeling a little better about the fact that regardless of complexity they usually end up being benign.
As far as the blood test goes, I thought I read that they don’t like doing that on premenopausal women because you can get false positives? I will just talk to my doctor and express my concerns, which I should have done in the first place instead of just stewing on the information. I just don’t like the “not knowing”, especially considering I want children soon, and am terrified of something jeopardizing that.
The possibility of endometriosis scares me, but I can manage that fear. I would just think that I’d have terrible periods and such with that, and I think mine are normal? The only thing I have is pain, and not constantly, it just happens sporadically I feel like, but when it does, it’s pretty terrible.
i wish my boy would just hurry up and give me a baby already and then I can at least put infertility worries behind me! I hate the wait and see approach, as prudent as it may be!
Post # 10
wendymoiraangeladarling : I had bilateral complex cysts while on mirena. They ended up being nothing of concern (I was 26-27 I think), my OBGYN actually proceeded with laparoscopic biopsy (instead of waiting and reultrasounding). They were nothing, I continued with mirena and they eventually all resolved. Hopefully that will be the case with you, I think my mirena has been in for about 3 years at the time. I’ve had mirena for almost 12 years total. Hopefully it is also nothing for you, but they definitely looked scary on the ultrasound. In hindsight, would have been better to wait and reultrasound in my shoes…