ruptured ovarian cysts

[caseymotherof3]

I am 23 years old and I have had so many ovarian cysts rupture that I have lost count! It's affecting my life dramatically. I have a cyst rupture every few months. I was put on birth control to regulate the growth but I have 2 different types of cysts and the larger ones that my fallopian tubes wrap around aren't controlled by the medication. When I was 16 I was having pelvic discomfort and my abdomen was distended. I looked about 6 months pregnant. I had an ultrasound and the doctor thought that my bladder was full. I told him that I had just used the restroom and he got a worried looked on his face and started looking more carefully at the large black circle on the screen. It ended up being an 8LB ovarian cyst. I had it removed the next day along with a couple smaller ones. A few weeks later, the first time I had a cyst rupture, I was 16 years old in highschool and the nurse thought  I was over-reacting. I was hyper-ventilating and just wanted to go to the doctor. She sent me back to class and on the way to the classroom I vomited all over the hallway and passed out. That finally got some attention. When I got to the emergency room they told me I had a cyst rupture. They shot me with some morphine and scheduled me an appointment with my gynecologist. I am 23 years old now and have had 4 surgeries to remove cysts along with countless trips to the emergency room when I have one rupture. They told me that I would probably never have children because of the damage the cysts have done to my ovaries and fallopian tubes. Despite their prediction, I have 3 amazing children. My doctor told me that the only solution to my problem is to have my ovaries removed. I don't want any more children and I have had a tubal ligation but I don't want my ovaries removed. The doctors say it will throw my body into premature menopause. I don't want that. I just want to know if anyone knows of anything else that I can do. The pain is so bad when I have the cysts rupture that I would rather have surgery once a month than deal with it. Child birth pain has nothing on the pain that I experience when I have a cyst rupture. I don't have the money to keep going to the emergency room but the pain is so bad that I can't function at all when I have one rupture. I'm not a whimp it's just that extreme! I woke up one time to a cyst rupturing and had to have my 2 year old run down the stairs and get the phone so I could call for help because I couldn't move and I didn't want to pass out when I was home alone with my children. Someone please help!

[mariaD2007]

Hello!

Your story is very interesting to me, because I have had a similar experience. I have had to have surgery two times to remove a large cyst from my ovary. Before I started taking BC pills I would experience SEVERE pain all in my abdomen from the cyst rupturing...it would rupture then fill up again...when all the fluid was in the cyst it would stop hurting...I know what you mean about the pain...and to tell you the truth, I am glad to hear that child birth is less painful, because what I experienced when they were rupturing was too much to bare!! I just have a couple of questions for you....do you know what type of cyst you had? by chance was it a mucinous cystadenoma? I have heard that estrogen protects our bodies from bone loss, increased risk of heart disease and all that..so if there is ANY other option, I would get a second opinion about removing the ovaries...I am very sorry to hear or your experience...I know you posted this long ago, so if you have an update, I would love to hear it...THank you for sharing!

[caseymotherof3]

I do have endometiosis. at least they tell me that i have fluid and endometrial tissue in my fallopian tubes when i had my tubes tied. i have no symptoms od endometiosis though. I dont have painfull periods....the onmly time i have abdominal pain is when a cyst ruptures. if they take my ovaries i will have them take my uterus to because there is no point in having it and it will just be sitting there waiting to develop cancer. i have tried every birth control that is believed to help with reduce the cysts. i have the small cysts that are actually inside my ovaries that the doctor says is normal....and the birthcontrol really does reduce those but no birth control that i have taken has had any affects on the ones that are outside of my ovaries. thank you for your concern.

[hopeshell]

I am so sorry to hear about your long-term issues with painful cysts.  You really have been through it and I am so glad you were able to have kids.  I know you mentioned you tried bc pills in the past, but have you tried them again after having your kids?  Sometimes, you have to try many different ones before finding one that works.  It may be worth a try before you decide to have your ovaries removed.   Do you have PCOS or endometriosis?  An underlying condition like one of these may be the cause of your multiple cysts.  In the case of PCOS, sometimes working with an endocinologist can help stop the cysts.   A gyn who specializes in endometriosis may be able to help you find help through medications.  Unfortunately, it will have to be trial and error to see what works and it sounds like you have been through a lot of that already! :(

As far as having your ovaries removed....do you plan to take HRT?  If not, then you are going to experience many unwanted side effects by having this surgery at your age.  I had mine removed three years ago due to cancer when I was 37 years old and now I already have osteoporosis.  I was not able to take HRT because of the cancer.   I take my calcium daily and did all the recommended things to prevent this.  But, with zero estrogen, your bones start to break down.  Also, there are effects to libido and many other areas.  

If you do take HRT and your cysts are being caused by an underlying condition like endometriosis,  you may still make cysts and the endo can grow in your peritoneal cavity even after your ovaries have been removed.  So, I think it would be a great idea to try to determine if you do have an underlying issue causing these cysts.  That way, you can proceed well informed.  It would be a shame to have the surgery and then end up with similar pain.  

Sometimes, it helps to get a fresh opinion on your health.   Another gyn may be able to offer you some alternatives to surgery.  Good luck on finding answers!  I hope you can get some help and remain cyst free!  If you find something that helps, please be sure to post your experience.

Shelly