Hi everyone! I'm a 37yo woman, and I am absolutely petrified that I won't be able to bear children. I have a 9cm cyst on each ovary, and I have yet to read about anyone having a cyst this size and still being able to save their ovaries. Please, please, PLEASE tell me that it is possible to have a cyst this size removed without taking the entire ovary!
I think that may depend on the type of cyst you are talking about. Have you had any scans or has your doctor told you if they are complex? 9cm on both ovaries are rather large. If your cysts are simple (fluid filled), I have heard of doctors draining them and therefore leaving the ovary. If they are complex then they remove the entire mass which usually does include the ovary so they can biopsy it all and give you correct pathology. They can't cut into suspicious masses without risking spreading the contents everywhere so they have to cut around them to keep them intact.
If your cysts are complex, you should be having a gynecologic oncologist do your surgery because masses over 5cm and that are complex run a higher risk of malignancy. Even most of those still turn out to be benign, but the quality of your surgery will be better with a gyn/onc because they have more experience. Correct staging can affect your treatment and you will avoid having to have a second surgery for staging because a gyn/onc can biopsy and debulk everything during the 1st surgery.
You can talk with your doctor in detail about your desire to preserve fertility and they are very good about working with you unless they have to remove all to save your life. Freezing some of your eggs is another option, but I am not sure if that is possible with large cysts on both ovaries. It is worth mentioning every option with your doctor.
I was dx with Stage 1 ovarian cancer when I was 37, so it does happen. Hopefully, your doctor will be able to give you a better idea of what he thinks may be going on. I hope all turns out to be benign!
Well, it was not what I wanted to hear, but thanks for your prompt reply.
My obgyn said that she would try to save my ovaries, as she is able to remove the entire cysts intact, but she's not too clear of the extent of damage they may have caused. She says that they are complex, and she wants to do a vertical incision to get a better look, and I hate myself a little for saying this, I'd rather have the horizontal incision because I don't want the scar as I keloid terribly. I have a vivid history of endometriosis in my family, and on the radiology report they were called endometriomas. I read online that endometriomas can have solid components, so I'm hopeful that that's what this is, but my doctor (obgyn/onco) is not ready to say conclusively that this is not cancer. I have not had a CA125 yet, but from what I've read, those are unreliable and give false positives all over the place, so I'm essentially back to square one.
My doctor (ob/oncol) is also working with a fertility clinic to discuss all surgical options, and she says that the cyst will be taken to pathology for review before the incision is closed to determine whether or not it's benign, and whether any other organs need to be removed. My regular obgyn said that there was no fluid in my abdomen during the sonogram, which was a good (albeit non-conclusive) indicator that there is no cancer.
I'm terrified. I'm scared of the surgery, the recovery, the scarring, waking and finding out that my ovaries are gone, the entire bit. Seriously...what am I going to do?
The thing is, that my periods are extremely regular, I have no pain/constipation/mood swings, and the only way I knew that I had them was during my routine gynecological exam! I have been tired, but I charged it to the fact that I'm constantly working overtime. I'm livid, reeling and terrified.
I am so sorry...it just seems unfair how one day you can be fine and then have these major decisions to deal with! Every emotion you expressed are ones I have experienced. It feels like a black cloud over your head. It is normal to go from scared to angry and terrified. But, you will find your inner strength and be able to make it through!
It does sound like your doctor is really working with you and will do her best to preserve your fertility. Also, it is a positive sign that there were no other areas of concern seen on your scan. Endometriomas will show up as complex, large cysts. Hopefully, that will be the case and your gyn/onc can drain them and preserve your ovaries. When is your surgery?
Despite the drawbacks, please ask for a CA-125 test. I never had one before my surgery, and now I really don't know for sure whether the test will function as an "early warning" should there be a reoccurance. It would have been nice to know.
The odds are they're benign, so keep a good thought. Good luck!
I am writing to give a little hope....My first ovarian cyst was size of football and I did lose my entire left ovary and tube....My right ovary 7 seven years later had a cyst the size of cantaloupe and they were able to save 30% of ovary I did conceive a year after surgery and have two wonderful sons now....Both of my previous cysts were dermoid cysts....My last cyst was complex cyst 10 cm I had surgery in Feb. 2008....but turned out to be cancer and was staged at 1A....As hopeshell and shewrites said before----- most cysts are benign...I will be saying a prayer for you and hope yours will turn out okay and the doctors can preserve at least a part of an ovary....Good luck....Love Dawnlyn
I had a vertical incision to remove a football sized cyst this April. I know how you are feeling- it's so scary. They didn't even know what my "mass" was until they had opened me up. It had ruptured and I did lose that ovary. My cyst was classed as borderline mucinous tumor. Apparently they can grow to quite a size quite rapidly. I had no idea I had it but I had was pregnant and lost a baby at 23 weeks the week before the surgery, and had put the symptoms down to that. My periods had always been regular and I had no pain etc.
I was home 4 nights after sugery, it was pretty sore for the first week, buts it's amazing how you do recover and my scar looks ok now.
Thanks for your answers; you've made this Type A control freak feel a little bit better.
hopeshell: we haven't scheduled the surgery yet, as it has become a bit of a challenge coordinating with the fertility clinic, but we're working on it.
shewrites: I'm going to have my PCP to schedule a CA125 immediately, so that I can have a better idea of what my levels are. My ob/oncol said that she was intending to order one for my post op blood work but, like you, I'll probably feel better once I have it done.
dawnlyn: Until I read your reply, I had absolutely no idea that one coud have a baby with only 30% of one ovary. What an amazing story you have to tell! I'm at least a bit less nervous that "all is lost". If you don't mind me asking, how old are you? I'm just wondering because I know that is a factor in determining how fertile one is.
heffmeister: Thank you for your kind words, and I am so sorry for the loss of your child. My cysts are not as large as a football, but I know they are complex and I am afraid for that reason alone.
Okay, I just need to vent: What completely BLOWS me about this whole situation, is that all I did to get this condition was be born female, and just like you guys, I'm paying for it! What, with the cysts, fibroids, endometriosis, heavy periods, cramps, PMS, moodswings, night sweats, involuntary urination, tubal pregnancies, ovarian cancer, vaginal dryness, painful intercourse, abnormal cells on the cervix, bloating, water weight, post partum depression, etc., etc., etc. in every grocery store in America there is an aisle specifically geared to cater to the maintenance and health of the female genetalia, and no matter what you do to take care of yourself, no matter how many vacations you plan around your period, no matter how you're careful not to take too many long hot baths to keep "her" happy, it still seems that you wind up on the short end of the stick!
It's so frustrating!!!! I don't have ONE female friend or family member that has not had to have something "done" or take some sort of "medication" because of some "female problem". Think about it: kidneys, the heart, the liver, the pancreas...generally speaking, if you take care of them, they'll usually take care of you. They don't have entire aisles dedicated to their maintenance. Ovaries? Uterus? Vagina? NOPE!!! They wait for you to do something so simple as use the wrong soap of have a love for strong coffee, and screw you over just because they exist! If the female reproductive system were an employee, it would be fired, as it never works, consistently, the way it's supposed to! Surely what Eve did in the Garden of Eden did not warrant this kind of backlash.
Oh, well. At least I now know why all those crunches at the gym were so ineffective; I've got cysts that are the volume equivalent of a 4.5 month fetus countering my efforts. One of my favorite things about my body is my smooth, stretch mark free stomach, and now, thanks to a 5 inch vertical scar down my midsection, that's about to be taken from me and I, someone who is still hopeful that she'll find the guy who is perfect for her, will constantly be reminded that I don't have him, and there's a chance that if I ever find him, I won't be able to give him a child.
I feel like a defective product that needs to be returned to the manufacturer...
Hi I havent read all the posts because I am in a hurry. I wanted to tell you my story very very quickly. I am 44 and since the age of 16 I have a cysts removed from both ovaries. some large some small. some blood filled ( what we call chocolate cysts) some dermoid. Although I did not loose my ovaries the scarring on the ovaries and the tubes was substantial. ( i had endrometriosis) Finally when I was 28 I had the dye run through my tubes to see if a precnancy was likely. The dye could get through. They tried again while I was awake incase the anestetic was making my tubes contract. still the dye did not go through. they finally told me to consider adoption or IVF. 6 months later I was pregnant with my daughter now 17. 4 years later I was pregnant again with my done now 12. 6 months after I had to say goodbye to womb and ovaries. My advice never give up hope and though lord I know its hard...try to think of something else!! You will hear a tail like this many many times. As soon as they stopped trying they got pregnant....got to be something in it! GOOD LUCK
Thank you so much for your response. I am really trying to maintain a positive outlook, and I am so glad that I have you guys to vent to and ask about your experiences. The thing is that I don't have a husband and I don't have children and in truth, I'm not 100% certain that I want either, but I just want the option to be there. And thanks to my last talk with my physician, the option may be there.
She told me that she was willing to use the laproscope before the procedure to determine whether the cysts look cancerous or benign. If she is in any way on the fence, she is going to make a vertical incision for their removal. If she is pretty certain that they are benign, she is going to make a horizontal incision and remove them. But the most exciting part is that she is going to have physicians from the fertility clinic in the operating room in the off chance that she has to remove my ovaries, to take "strips" from them and freeze them so that if I ever decide to have a child, that option would be available to me. I am going to go home and recover at my parents house for 2-3 months, and then return to work. Thankfully, I have short term and long term disability coverage at my job that will allow me to be off as long as medically necessary to ensure my health.
Now, I need to know about the recovery and scarring...how bad is it? Did you stay in bed for the entire two months? Did you have any problems with healing? Did you have a vertical or horizontal incision? When did you start scar treatment (I'm sorry...I know this is vain, but I can't help wondering how much my body is going to change after the procedure).
Thanks again, and I look forward to your responses. They have been more helpful than you'll ever know!
hi i am really sorry for you but i love your honesty i am 24yrs single no man no baby and i am not a leisben ,i was unaware i had a cyst untill it ruptured and i ended up in a&e with suspected appendix they did a scan and then decided to go in with a camera to have a better look because there was an obstruction in the way i just thaught it was appendix so when i woke up they told me that i had a dermoid on my right ovary that twisted and caused the fallopin tube to knot and that cut the blood supply off to my ovary and it died it was gone black and gangreous i was still high from op that i said oh thats grand once they dident take my appendix ,so here i am 3 months later with ovary and tube , but i am alive my dermoid was beigin i lost a freind at christmas to ovarian cancer at the age of 22yrs and she had no man no baby so for me it helped me to see the bigger picture pity she wasent told you lost your ovary and tube i really hope you will get good news and this will be behind you i will keep you in my prayers keep in touch and let us know how you get on and rember god is good x
I had my op on a Friday and stayed in bed the next day. I think I sat on a chair to wash for a few minutes only. But I was able to walk to the bathroom the next day- catheter came out and taken off the patient contolled mophine (which was fab btw) that evening. I went home on the Tuesday and rested alot that week but was able to walk around as normal, do stairs etc. It was just quite sore and you need to remember to take pain killers regularly. I had a 4 inch vertical incision and it was also held with staples for a week which looked gross and were uncomfy the last few days.It was a relief to have them removed and my stomach flattened out. I just put bio oil on my scar. Make sure you have lots of lose comfy leggings or track suit bottoms because at first you can't bear anything lying on the scar and pressure there made mine weep. I had to resort to sticking a sanitary towel down the front of my trousers sometimes- not a good look!
I know how you feel aout being a rough deal being born female! I also have high grade abnormal cells in my cervix which have re-occured twice despite extensive unpleasant treatments hence I am having MORE surgery next week-a hysterectomy- I really think my reproductive organs are trying to kill me off and I would be better off without it!
Thank you both for everything. I'm very thankful that I have a patient doctor and a job that will allow me to be off work for as long as I need to to heal, and you're right: God is good.
My mother had a hysterectomy and said that a friend of hers told her that it would take 3 years before she felt completely healed, and my mom said that her friend was right. I'm just angry that I have to deal with this, but I guess it could be worse, huh? Ska4life, I'm so sorry about your friend and your horrible ordeal. I can't imagine having a gangrenous ovary, you poor thing. Well, at least you have your other ovary
Heffmeister, thank you for giving me hope that I won't be an invalid for the entire 2 months. Do you have skin that scars easily or do you keloid? How long ago was it when you had your surgery?
Yes on the 2nd of April. I went back to work 7 weeks after leaving hospital but I only work part time and they were very gentle with me! They were surprised to see me back but to be honest staying at home with 2 small children so more exhausting...I will having to have another 6 weeks off now for the hysterectomy good job they are understanding isn't it?
Hey, there! Yes, it is good that they are understanding at your place of employment. I'm actually exploring some herbal remedies while waiting for the doctor and the fertility clinic to get it together. Who knows? Perhaps the cysts will shrink a bit and I'll have to have a laparoscopy iso a laparectomy?
I spoke to my minister's wife today about my condition. I did so b/c I knew that she had a fibroid so severe that she would often have to leave church service so that she could go change her sanitary napkin that she bled through in less than an hour. She said that she started to take several doses of herbs, as her physician scheduled the surgery to remove her fibroid. And I kid you not...according to her, she was actually sedated and about to go into the operating room, and awoke to find that the surgery never took place because the fibroid kind of "aborted" itself and came out before the incision was made. She says that the doctors had never seen anything like it; they also said that it had the foulest appearance and smell than anything they had ever seen. Now, I don't dare hope for anything so dramatic, but I do hope that a good liver cleanse and detox will give me a running start before the surgery is to take place. I'll report back and let you all know.
I am scheduled to meet with the fertility specialist on Monday, and I am strangely excited. I always believed that my children would be planned to the "nth" degree, including in vitro fertilization, so maybe I drew this situation to me (hello, Law of Attraction!). It's cool. I mean, the US beat Algeria today and is still in the World Cup (yay!)...anything is possible, right?
I am also getting my CA125 test on Monday as well as another sonogram. My mother has arranged for me to talk to her friend's daughter who had her ovarian cysts removed via vaginal incision, and she now has two children. If this is not an alternative, I am going to request a plastic surgeon to open and close the incision, and I'll let you, my new friends, know how it goes.
Sidebar...anybody who is reading this message should hear me clearly on this point: I don't give a d*mn if you want to go for 17 "second opinions", you should be firm and certain in the fact that you have a right to as many opinions as you want/need so that you can make the best possible decision to feel comfortable and confident of the care you receive. Period.
I'll keep you guys with me on this journey, if it's okay. I'll also pray for you, and ask for you to do the same. Good night!
I currently have bilateral 9 cm dermoid cyst, and a large calcified fibroid, not only that I am 31 weeks pregnant. I have had both cyst prior to becoming pregnant. My mw says that they could shrink 4 weeks postpartum, if not a laporscopy will be used to remove them.
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