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 Posted: Sat Aug 08, 2009 8:34 pm
When I had my gallbladder taken out, the surgeon said he found a huge ovarian cyst. He described it as the size of a volleyball and filled with yellow fluid. He said it was the biggest he'd ever seen. He said he drained some of the fluid, tested it and it came back negative for cancer..
he also said there are probably more cysts and this one has probably been in there for years due to it's size. He told me that when I get my insurance sorted out, to go to a gynocologist. He
He didn't seem like I needed to rush, but I'm terrified. I'm wanting to have babies and I don't want to lose an ovary. I can't get to a gyno/get the insurance settled until at least September. I've been looking stuff up online but all it does is scare me more.
Does anyone have any experience in this area? Help!
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Posted: Sat Aug 08, 2009 9:38 pm
i have polycystic ovarian syndrome and also have ovarian cysts.
now, there are various degrees of it and mine doesn't seem to be as serious as what you're experiencing, but maybe i can reassure you a bit.
first of all, don't do too much online research.
talk to your doctor, everyone is different and too much information can be as bad as none.
when i was pregnant with my daughter, one of the cysts on my ovary burst and it was so painful, that at first they thought i had an ectopic pregnancy and would need to be rushed in for emergency surgery.
everything turned out okay, but it was scary.
occasionally, i experience pain when my cysts burst, but they must be small ones and it doesn't happen very often.
when you do get to the doctor, they might have medications that can help.
i take metformin to regulate my blood sugar because of the PCOS, but i'm not sure if that helps the cysts. birth control pills might also help.
just try to relax.
i have a friend who has severe PCOS and they told her she would probably never have kids due to the severity of her cysts, but she just had her second baby in february.
like i said, try not to read too much on the internet.
when they discovered a cyst on my daughters spine, i panicked and began doing a bunch of research online.
big mistake!
they said it could lead to bladder problems, crippling pain, problems walking, partial paralysis, FULL paralysis, the list went on and on.
i was nearly hysterical by the time we got to the neurosurgon consultation at children's hospital.
turned out, while this type of cyst on her spine is indeed rare, he'd never seen anyone with those kinds of complications. it could happen, but wasn't likely. that was 3 years ago, and while occasionally it bothers her, she's in junior high and just fine.
i guess there wasn't a lot of helpful advice here. sweatdrop
i wish you the best. if you get time, update and let me know. heart
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Posted: Sat Aug 08, 2009 9:57 pm
I know with PCOS, you have irregular periods, right? For the last 2-3 years, mine are right on time each month. I don't think it's endometriosis since it said the fluid was "yellow like urine". Those cysts for endo are usually brown/old blood. I'd rather not have endo but I don't want to have pcos either. When I was trying to have a baby, I'd be on these TTC message boards and the ladies with PCOS were always so upset because it's so hard to conceive when you have that. I'm 32 and I'm getting too old. Before long, I'll be 35 and 40 and I will have missed my chance.
When I look this stuff up online, it says that if the cyst is large, they can't do it laproscopically and they have to cut you a larger incision in a regular surgery. They also sometimes have to take the cyst AND the ovary. If they take an ovary, I really won't be having babies.
My husband is just thrilled that the fluid came back negative for cancer. However, he's not the one that supposedly had a volleyball sized cyst inside of him. The surgeon says he drained it but it's still pretty big. I have no idea how big it really is. The surgeon said he doesn't even know which ovary it's coming from because it was huge and sitting right in the middle of the abdomen and was blocking his view of stuff. ack! Hubby says that if the surgeon was able to drain some of the fluid from the cyst, why couldn't a gyno/surgeon drain it until it's small enough to do laproscopically?
I'm really upset because I've been suffering with gallbladder issues for two weeks, they took it out and I'm about 12 days out from that surgery and I'm STILL having issues. I'm just mentally drained and very scared about the whole thing.
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Posted: Mon Aug 10, 2009 7:07 pm
I do have problems with cysts, unfortunately I don't have medical insurance and that's about as far as I've gotten.
I've always had irregular periods and very bad abdominal pain. When it gets unbearable, I complain and the doctors freak out (freak out!), mention cancer, do some tests and then tell me I'm not going to die.
I would suggest being very open and honest with your doctor. Don't let him leave the room if you have questions. I have known people who have had unusually large cysts - some have gone on to have children, some have not.
What I was told for me is that it's probably going to go on for the rest of my life. I'm currently on a losing battle with finding a decent birth control that deals with my menstrual symptoms, but for the most part the cysts have been better.
I would make sure that you find someone to talk to - living in chronic pain is a major bummer. It's hard to fight the depression that tends to come with it.
Best of luck - I will send you happy thoughts!
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Posted: Tue Aug 11, 2009 12:01 am
Hey guys!
I just found out today that hubby's work's insurance enrollment is now in December with coverage starting in January instead of August/September.
Now I have a few issues.
-I could try finding a planned parenthood that could give me an ultrasound and check the cyst or point me in the right direction
or
-try to pay on my own even though I've got close to 10k worth of unpayable bills from the gallbladder removal
the problem is that if I got to a planned parenthood and they diagnose me, wouldn't that give me a pre-existing condition? When I do get the insurance, they may not cover any treatment for it. I'm not sure about this specific insurance but isn't that how it is for most insurance?
3 months is a long time to worry about having a monster cyst.
I'm also losing online pals left and right because they all think I'm "too negative". It pisses me off. I've had a shitty month, what am I supposed to do? Cartwheels? When something bother me, I vent. Apparently, I'm wrong to do that. I realize I've been angsty and complaining for a month but I've had a very very shitty month.
*sighs*
My small little list of friends is almost nothing now.
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Posted: Tue Aug 11, 2009 2:13 am
Considering the potential seriousness of your medical condition I think some negativity is to expected. Sorry though. sad
The hospital you go doesn't offer any kind of financial help with the bills though?
Good luck with it though, hope everything turns out ok!
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Posted: Wed Aug 12, 2009 11:27 am
I think they give a slight self-pay discount and offer a payment plan but still.. I can't afford to tack on anything else to the giant stack I have already.
Not to mention, if I go to a place for the cyst, they will diagnose me officially and it will be in my files. If that happens, I don't know if the insurance I'll be getting in January will cover any other treatments regarding the cysts, because it will then be "pre-existing". It looks like I'll be waiting 3 months and hoping nothing happens. It's hard to sit on information like this for that long and not worry though.
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Posted: Thu Aug 13, 2009 1:18 pm
Ugh, that's no good at all. Stupid insurance companies.. Good luck with it, hopefully it won't be anything serious and things will be fine.
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Posted: Tue Sep 08, 2009 9:23 pm
Sashanaru I think they give a slight self-pay discount and offer a payment plan but still.. I can't afford to tack on anything else to the giant stack I have already. Not to mention, if I go to a place for the cyst, they will diagnose me officially and it will be in my files. If that happens, I don't know if the insurance I'll be getting in January will cover any other treatments regarding the cysts, because it will then be "pre-existing". It looks like I'll be waiting 3 months and hoping nothing happens. It's hard to sit on information like this for that long and not worry though. Hun, wait until you have insurance. Then see a gyn who specializes in surgery. Fluid filled cysts are almost always benign and rarely the cause for loss of an ovary. You can still get pregnant with one ovary, however. You just ovulate every other month instead of every month. I'm sort of surprised the surgeon didn't completely decompress it, but perhaps the fluid would have just come right back. They need to remove the fluid and the shell and MAY be able to do it laparoscopically, depending on the images they get beforehand, just deflate the bugger and then tease out the shell. Regardless, extremely low chance of infertility with these thingies. Hang in there. The waiting and wondering is the hardest part. *hugs* ~bandaidd, RN
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Posted: Fri Sep 18, 2009 10:45 am
My sister had cysts and one burst and scarred her ovaries and they told her (stupid doctor) that she couldn't get pregnant. Low and Behold she has a healthy 2 year old. Don't ready anything on the internet. It isn't worth crumbs. A lot of Gynies have coverage you can apply for if you don't have insurance and sometimes those programs are better then having actual insurance. I have full coverage and they still pegged me for almost 15,000 after my still birth but I asked about help and the hospital forgave 8,000 of it and then I disputed it for a long time with my insurance and they covered 6 more of it and I was only liable for my copays... like it should have been in the first place. I guess what I am trying to say is stay hopeful and ask all the questions you can...
1)Ask how you can cover the costs and if there is any low income help or recommendations.
2)Keep good track of you finances to see if you are spending unnecessarily in any areas where you can save that money into an emergency only savings account.
3) and always have a game plan and don't get freaked out.
Good luck.
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Posted: Wed Mar 24, 2010 7:04 pm
I have Ovarian cysts also and they are being well controlled on birth control pills. The hormones or something in them keeps the cysts from getting too big and/or keeps the frequency of them down. I had a couple of large ones that ruptured one of my ovaries and for a long time because of it they told me that my ovary didn't work anymore. I now have a lovely 2 1/2 year old daughter that was conceived from the ovary they said didn't work and I didn't know it had started working again because I still was only having periods every other month. After my daughter was born I became more regular again but I also had to go immediately back on BC to keep the cysts down again. So yeah, I would recommend BC but not like you can get pregnant or have a healthy pregnancy while on it.
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Posted: Wed Mar 24, 2010 7:06 pm
TequilaRose My sister had cysts and one burst and scarred her ovaries and they told her (stupid doctor) that she couldn't get pregnant. Low and Behold she has a healthy 2 year old. Don't ready anything on the internet. It isn't worth crumbs. A lot of Gynies have coverage you can apply for if you don't have insurance and sometimes those programs are better then having actual insurance. I have full coverage and they still pegged me for almost 15,000 after my still birth but I asked about help and the hospital forgave 8,000 of it and then I disputed it for a long time with my insurance and they covered 6 more of it and I was only liable for my copays... like it should have been in the first place. I guess what I am trying to say is stay hopeful and ask all the questions you can... 1)Ask how you can cover the costs and if there is any low income help or recommendations. 2)Keep good track of you finances to see if you are spending unnecessarily in any areas where you can save that money into an emergency only savings account. 3) and always have a game plan and don't get freaked out. Good luck. Oh hay sis. I just saw on here that you wrote about me. Hahaha. After I posted.
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Posted: Sat Apr 10, 2010 4:04 am
My doctor thought I had it at one point and put me on birth control. She said hormonal treatments and small life style changes could make a huge difference. She also told me that fertility drugs work well in this situation, but if worse came to worse I could always preserve some of my eggs and have a surrogate. While the nine months of bonding during pregnancy offer a level of comfort to some women I'm not one of them. Having had some issues a surrogate seems to be looming in my future, but that's not necessarily a bad thing. Trust me there are ways around this.
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Posted: Wed May 05, 2010 5:58 am
Sadly i think this problem is rather common. Ive had ovarian cysts since i was 15. Three years ago i woke up with so much pain i had to have my big brother carry me to the car so he could take me to the hospital, because i could not stand up or move my legs. I had a cyst the size of a tennis ball on my right ovary. It put a lot of pressure on all my other organs. You know what the hospital did for me? Nothing. They gave me pain killers and sent me home. The pain subsided a week later. After i went to see 3 different OBGYNs. All told me that if i wanted any kinda of normal life, i would need to take Birth control for the rest of my life. If i stop taking it, the cysts come back and i end up with bouts of menorrhagia.
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Posted: Mon Jul 26, 2010 9:36 am
I'm another PCOS woman, but I have been SO lucky - mine have nearly gone away after my two pregnancies. They were controlled with birth control pills. Without the pills, I would be unable to walk during my period, due to the pain. I bled like a stuck pig for a week, had trouble eating without getting sick, and just could not function.
An OB/GYN will probably put you on BCPs to see if they help. They really helped me.
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