Hemorragic/Demoid cysts 'resolving' dangerously

[Gr-emlin]

QuestionS (plural - sorry) Hoping for some insight! I have a history of dermoids, left oophorectomy due to 12 cm dermoid w/ torsion at age 22, then recently (Jan 06) had a 2nd surgery for another dermoid on the right w/ partial oophorectomy. Now I am being told I have a 6x5x4 "complex" cyst (most likely hemoragic says the doc) again on the right after pain for past 3 months. Doc says he wants to do a blood test "just incase" for cancer, & ordered another ultrasound in 4 wks, but if hemorragic, he (fill in doc, mine is out of the country for 2 wks) says it will "resolve" on its own. My job is dangerous to me & others- I need to know if this can be very sudden & painful? Is this always a rupture? I have heard you can bleed out internally- how often can that happen? Can it cause torsion just like dermoids? Is it the result of the surgery or something else I have done?
     The doc also says that if I am in too much pain & need surgury, they will most likely remove the ovary. I have read some people who have both ovaries removed also have a hysterectomy - is this standard because of the cancer risks?
    Does anyone have any info on anyone doing research on dermoids/ovarian cysts? My many different docs over the years all seem to have different opinions on what causes them - is anyone doing current research? More than anything I'd like to know if these are somehow preventable. Any good websites to recommend? (besides this one of course!) Thanks for your time!!

[Gr-emlin]

Well, I'm not sure that input makes me feel any better- the prospect of never-ending cysts, that is, but I did check out the website Mary mentioned & Dr Northrup does offer some explainations as to things that may cause or contribute to hormonal problems. I think you (or maybe another) also mentioned that, generally speaking, many "ovarian cysts" & endometriosis are hormone imbalances of one sort or another - & I do believe there is something to the idea that stress or something can affect that & my stress level is pretty high, so that would certainly explain things for me.
  I am pretty new to the site, so I had not heard of seeing a gyn-oncologist. I feel pretty comfortable w/ my OB, she seems to be an extremely well-thought-of surgeon & I was happy with the surgery she did in January (until now - an even now, only assuming that the surgery had anything to do with my current problem). But it is something I intend to look in to anyway & I am now armed w/ lots of good questions should they decide they need to operate! I guess if she does not answer them satisfactorily, I may consider that option further. It seems I would have a hard time getting a referral unless my CA-125 screen comes back w/ elevated numbers.
  Well, I hope you get some good answers from folks yourself & can put an end to your own "gremlins!" Take care- G

[MickeyVicki]

Interesting that you should comment on that three month time span.  I have found that with my own cysts, about three to four months is the time span of the discomfort caused by my cysts.  The cyst that I can feel now has been with me for roughly one month.    I have lost about two pounds.  I think that gurling, gassy feeling caused by the cyst lessens my appetite.  Not to mention that when I sit down I feel like I need to palpitate my abdomen and adjust everything inside it, to make it fit into place!  If I still feel the cyst in August, then I will go back, yet again, to my doctor, for yet another ultrasound and testing...it's my own personal  never-ending story...so, no, since  you are under the care of a doctor who is monitoring your cyst, there is nothing in your posts that would concern me that you need to take immediate action for your cyst.  But don't stop the follow  up!  And I know that you have read this statement time and time again on this site - but if  you do require surgery, then please seek the services of a gyn oncologist.  We only get one chance to get our surgeries right --- the first time --- so you will want a specialist to do the work just in case.

[Mary 53]

Hi,

Google the words "Cysts and Dr. Christiane Northrup" and see what comes up. You will get information on cysts along with a recommendation of her book, "Women's Bodies, Women's Wisdom." Sounds like you are looking for more information. Her book, "The Wisdom of Menopause" is my menopause handbook since my radical hysterectomy in 2000. Love her style and support.

That book (the first one I mentioned) was published in the 90's but it is interesting. It was because of the information in that book that I got on the research bandwagon and ultimately insisted on a coposcopy after my very first bad pap smear at age 45. The doctor agreed to do it but I sensed concern on her part that I was "overly-worrying." Three weeks later, I was having surgery for severe cervical dysplasia...one step away from cervical cancer.

I applaud you for being so proactive regarding your health. Take care.

Mary

[Gr-emlin]

Thanks for your help MickyVicki - I have been reading your comments to others as well. I demanded to talk to the fill in doc again today while I was there again for my CA-125 screen, and he "guessed" the chance or sudden torsion or painful rupture was about 15% and recommended I not continue flying duty until after the next ultrasound. He did move up the ultrasound by 2 weeks after hearing what my job was, but did not have a very good answer for my why I have felt this pain for 3 mo now- he had told me originally that a hemorragic cyst would resolve w/in a month.
   I'm starting to wonder at my wisdom in looking into this site. I wasn't worried until I started reading some of the other entries. Now I am realizing that I have had "decreased appetite" (lost 10 lbs last few months) and always feel nauseated/bloated & lately have been constipated. It seems from the anecdotes that these are not necessarly only symptoms of cancer, but I didn't even put the two together until I read the posts.
   Anyway, I appreciate your insite. Are you not allowed to mention sites by name? I'd be ashamed to admit how much time i've wasted trying to find a good site on the cysts/dermoids/causes. All the ones I've found seem to say the same thing, or occationally will find some portion of a med-class that I can't understand because it is in med-speak.
   Sorry to hear about your troubles. It is a relief to have all of you to talk to when I'm worried. I hate to worry my husband who is serving overseas right now & cannot do anything for me but worry. I hope you have had a happy ending to all of yours & you are just here to help!

[Gr-emlin]

Thanks for the post ziggysgrl - I, thank God, do have 2 beautiful boys. The Doc seems more worried about me going into menopause at my age than not being able to have kids again. I haven't even started looking into the effects of that, but I have heard you age about 10 years overnight. A bit scary, but at least I'd still be around to see my boys grow up, right? I looked at some of the much older posts & it seems that many ladies who have been plagued by these have been over & over - my big fear, so it appears as if I may be doomed to either surgury w/ removal or years of pain w/ repeat cysts . . . hmmm.

[MickeyVicki]

OK, I doubt that I will get all your questions, but here are a few.  No, you will not "bleed out" (i.e., hemorrhage to death) if the cyst ruptures.  If the mass ruptures, then you will have internal bleeding, and the pain could be quite sudden and quite strong. It also could resolve rather quietly, with no pain or discomfort.  No, it is not likely to have been caused by anything that you have done, but it might be due to the surgery, or just from the disruption of the normal follicular cell development and resolution process.      Odd things can happen when hormones go awry.  Dermoids form from a seriously malfunctioning cell cluster, but that is a long story and you can find tons of info on that subject on the internet.   Yes, if you have the remaining ovary removed, then it is recommended to have the uterus removed to protect against uterine cancer.  

I had a complex mass removed, along with my left ovary, in 2004.  Since then, I've had another cyst problem that resolved on its own after bothering me for several months, I developed uterine polyps that had to be removed for biopsy, and I once again have cyst on my right ovary (I can feel it.)  Had I known what I would be plagued with for all this time after my surgery in 2004, I'd have had all the "plumbing" removed and been done with it in 2004!

[Gr-emlin]

Mary, thanks for taking the time to write. drnorthrup.com already has WAY better infor than anything I have found & I have only touched the tip of the iceberg on her site. Thanks so much for sharing & all the best to you.

[ziggysgrl0724]

Hey, i have dealt with a rupture pain from hemmoraghic cysts....it is very painful, do u have children? i can think to describe the pain in 2 ways, one way would be a long hard, non relenting labor contraction, and the other way which is not as pleasent sounding is, someone taking a knife and putting in a certain place on the backside of your body and twisting it....i know that sounds horrible, but its the best way i can describe it...thats really the only thing i have any info on as its the only thing i have experienced, i am 24 and have had 2 since seb.