I was told last Thursday that my sonogram showed my right ovary to have a softball sized partially cystic partially solid mass on it. My gyno (whom I totally trust) did the CA-125 blood test and told me that b/c of the size and "solid" component of my mass he wanted to perform surgery as quickly as possible but that he wanted to wait for my bloodwork to come back in case we needed to involve a gyn/oncologist. I had been having really bad pain for about 2 months prior to the diagnosis - along with irregular periods and my most recent period stopped after 1 1/2 days. My pain finally got so bad I went to the doctor. Anyway, over the weekend (I am going to get a call from him on Monday - about my bloodwork and the next step) my abdomen seems to have gotten smaller and my pain has been shifting around and sometimes completely gone. I did experience lightheadedness and waves of nausea but nothing else. What I want to know is this: I know that follicular cysts (functional - fluid filled) can disappear on there own and everyone gets them...but can a pelvic mass "partially solid" (softball size) disappear over a couple of days? or does it move around? if my bloodwork comes back clean and i don't have pain anymore - should i just chalk it up to a learning experience and go on with life?
I am SO VERY confused!
Thanks for your info. I spoke to my doctor today and my CA-125 test was a little elevated. I know that I can't put any stock into that test - so i'm letting that info go. I did tell my dr. that my pain isn't the same and that my stomach seems a bit smaller. he didn't seemed fazed at all. he told me that he is calling me tomorrow AM and that i need to know whether or not i want to bring in a gyn/oncologist. he wants to getmy surgery scheduled. he said that my ovary can move around and therefore - so can my cyst. i have noticed that when i used to lie down - my stomach was flat but i had a lot of pain on my bladder. now, i don't have the pain on my bladder but i have this perfect softball sticking up on top of my pelvis. it is freaky looking and kinda funny. i do have a lot of back pain and pressure in my vagina - as if it has dropped lower in my pelvis. i did ask him more about what the sonorgram results said and he said that i have a very large complex cyst with septations and thick walls? everything that i read says that my situation does cause gynocologists to be concerned. i'm just going to take it one day at a time...but this sitting and thinking drives a person mad! i feel like i am always questioning if there is anything wrong with me at all! i really need to get a life - but my dr. told me i have to be calm and rest in order to minimize my risk of rupture and torsion (sp?). any advice or joke is more than welcome here!
Hopefully, Xrayu2 will stop by and post. If I recall her story correctly, then she had not one but two solid or semi-solid ovarian masses. Yet, in follow-up testing the masses were gone.
However, it would appear that since you do see a lump sticking up from your abdomen that the mass is likely still there.
In 2004, I had a large complex cyst with solid components and thick cyst walls that was found to be a benign endometrioma. I also had the irregular cycles, missed a cycle completely, and suffered from pain in the last days before my surgery.
Did the ultrasound reports indicate possible diagnosis for the mass?
Thanks for your info and input. I went back to the dr. today for pre-op bloodwork. I'm scheduled to go into surgery on Monday, the 31st at 9 AM. I read my ultrasound report while I was at the dr's office. I don't remember much about it - except that my cyst was basically like 13cmx11cmx13cm; I was diagnosed as having a right adnexal mass - both cystic and solid..."possibly an ovarian mass or endometrial hemorraghic(?????); agressive treatment recommended; something to do with showing echogenicity; some fluid in my pelvic region; nothing wrong with my uterus; left follicle cyst - nothing abnormal with that." (of course that is in my words from notes and memory. And when I had my pelvic exam - I had A LOT of tenderness and pain.
I have had backaches and pain in my legs today and then this evening - nothing but a lot of pressure in my abdomen. No specific pain - just pressure.
So, I guess I'll just keep taking it one day at a time.
Any more info would be so greatly appreciated. My husband and I had a trip planned for Italy (our delayed honeymoon) in September and we would sure like to be able to go but are going to wait until the last possible moment to postpone...IF we HAVE to....
Good luck Laura, your case is interesting from a medical standpoint. I'm going to hope that it is benign, or does disappear on its own. You have heard and read here that 99% of masses are benign. Take good care and let us know what happens after surgery. I know I would definitely want a consult with a gyn/onc, this is very important.
Ovarian mass is a generic term, and could be anything. The endometrial hemorrhagic description could indicate a mass commonly referred to by the term endometrioma (aka chocolate cyst.) When the report calls for aggressive treatment, the pathologist is letting the doctor know that a "wait and watch" approach is not the best option for the patient. The studies of the imaging do not lead the radiologist to believe the mass will resolve on its own, or that it has characteristics that indicate a slight increase in the chances of the mass being malignant. As you have read again and again, the only way to determine if the mass is benign or malignant is to remove it for biopsy, and this surgery option is the one the pathologist is essentially recommending to your doctor. I should add that the fact you have a normal cyst on the other ovary is a good sign. It means that ovary does not appear to have whatever condition is affecting the ovary with the mass.
I have a question!
my medical insurance company (that kind of stinks) doesn't have a gyn/oncologist that can practice at the same hospital that my gynocologist can preform surgery at...so I have to either just have my gyno preform the surgery and trust that the mass is benign (which it mostly likely is) OR i can try to find a gyn/oncologist that can take me this quickly and trust them to understand me and all of my concerns and preform the surgery.
I am really leaning toward having my regular gyno preform the surgery - b/c i trust him and he has seen me through full blown eclampsia (during my 1st pregnancy) and 2 bouts of hemorrhaging (after the delivery of my 1st child). He knows me inside and out (literally!).
all of this to say - what should i do? I awaken every day in tremendous pain b/c the tumor is pressing on my blatter and my dr. wants me to be very still and rest so that nothing ruptures and i basically am in some sort of pain all the time....and i want to go to italy in september (like i have planned).
but am i being ridiculous by not having the gyn/oncologist involved?
I feel up against a wall.
wow! sisters separted by the Atlantic! wow, what a story. i am seriously intrigued! it sounds as though things are looking up - as far as it being benign. how long until your surgery? i hope not too long. i have just another 5 days to go until my surgery. although, it seems to be taking forever b/c i have two children and i feel awful that i can't do all the things i would do before (even when i had the cyst but didn't know it). i always am saying NO or LATER or AFTER MY SURGERY and i'm getting really tired of it. they need their mom back - you know? and i have found a lot of humor in all of this and even took myself to my parents neighborhood pool yesterday - with my prego looking stomach right out there for everyone to enjoy and stare at. who would have thought that a large cyst could give you the confidence to hang your belly right out there??? as far as i was concerened - my stomach was ONLY the result of my cyst and had nothing to do with my lack of exercise. the day i was told of the seriousness of my condition - i was on the drive home and i told my husband that maybe all i would get was a phone call telling me that they had read my ultrasound incorrectly and that in deed - i was just plain fat. and i said - who would have thought that the best thing i would ever hear would be the words - "you know what? you're just fat."
so, enjoy the freedom not having to care about your appearance cuz its not in your control anyway. right?
in all seriousness - i do hope and pray that your surgery will go extremely well and that your situation turns out benign and that you have the hot bod you always dreamed of once the tumor is gone.
My surgery is the 31st of July, so we'll have to keep eachother informed (as well as everyone else) about our recovery process.
you are going to the Dominican Republic and I am supposed to go to Italy. I hope we can both follow through with our trips. Have you been to the Dominican before? I studied Italian in college and lived in Florence for a short time - as well as my husband - but he was there 10 years before me. We wanted to go back together and do the stuff we didn't do before - but we are having to restructure our trip a little bit (no hiking in the Dolomites or Alps - I guess). But it did force us to make a decision on where to spend our time in Italy - SOUTHERN ITALY WITH NOTHING TO DO BUT LAY OUT AND REST. I can't wait!!!
Anyway, I am glad to hear that you aren't in terrible pain. Me neither....it comes and goes. Mainly it is just the pain of watching me get bigger despite my best efforts to get smaller (so i COULD fit into a fantastic bikini!). Now, its going to be more like a moo-moo or wet suit. I don't want to scare the natives...or my sweet husband.
Where are you in the UK? I have only been to London and Edinburgh, Scotland (which I LOVED!!!).
Take care of yourself and enjoy your time off from work and stress and life.
My surgery is on the 4th of August, I can't wait to get it removed! I'm sure all the symptoms get worse as soon as you know there's something causing them, I used to keep quiet (well quiet-ish) about all my vague and odd tummy complaints, except for carrying on about evil bread - now it's strangely liberating to complain about all my symptoms without feeling guilty for moaning! And 2 weeks ago I wouldn't ever have allowed anyone near my stomach, I think everyone I know, and some I don't(!), has felt the lump and ohh-ed and ahh-ed about it. I'm just hoping everthing is okay and I've had the equivilent of a tempory stapled stomach and liposuction for free, I'm willing to swap the scar for that! It makes me wonder how long it's been there because I've had an out of proportion stomach for a long time, I just thought it was unfair.
I don't know how you've managed looking after a family with the tiredness. I've been into work this week to try to get everything sorted out, I've only sat at the computer and I'm shattered by lunchtime, usually I do a minimum of 10 hours on the go. It hasn't helped because I've been having hot flushes as well and they have knocked me for six - is it normal to go faint and feel really odd with them? I've just had a really funny do, started with getting hotter and hotter, then faintness but didn't faint, very nauseaous and felt terrible, Darren (OH) said I turned bright red then went white, thats why I've taken so long to reply, it's not happened before like that, but I feel fine again now. I think I must be relatively lucky with the other symptoms considering the size of mine, I haven't had any back or thigh pain, just occassional stabbing pains and general bloated uncomfortableness in my stomach - nothing that would make me go to the doctors. I don't like it when I stand up or sit down quickly or bend over, I can feel nipping, pinching feeling or it feels like it's thudding against something - horrid!
We have a holiday booked for the 19th of October to the Dominican Republic, so with a bit of luck it'll be just at the right time.
I better go now I've got to make a list of questions for my appointment tomorrow!
Laura, your story is so similar to mine at the moment! I hope you don't mind me explaining mine, I know I go on a lot but there are other bits I've got that have complicated matters! By the way I'm in the UK, 42, no children and otherwise fit.
I had been having vague tummy aches and pains (that I thought was bread intolerance and that I was a hyperchondriac)for ages. About a month ago I discovered I'd lost 10lb without trying, then, thinking about it, realised I'd only ate about 3 proper meals in the past 10 days and was rarely hungry and was forgetting to eat! Went on holiday to Vegas for a week,quite pleased I could eat buffets until I burst and still fit in my clothes. I had one attempt at a buffet, had about a 1/4 of a small plate and was so full I felt ill for over a day - this was not me I eat huge amounts usually! Got indigestion tablets and blamed it on bread and ate next to nothing for the rest of the holiday. I then, luckily, got a bad chest infection.
On getting back home I was made by a friend to go to the Dr about the chest infection and I mentioned the stomach pains (embarrassed as I thought it was my imagination as two days discomfort was never the same.)On examination he thought my bladder was full, I said not, then he wanted another Dr for a 2nd opinion. Anyway after an hour of questions and exams they told me they had found a big 'lump' which they were obvious anxious about but suggested a large fibroid, and I was to collect a letter the following day for an urgent ultrasound scan. I got home learnt all sorts about fibroids and was quite relaxed about eveything. Went from work for the scan and thought I'd be about an hour or so, but was admitted after a pelvic eaxamination. There was lots more examinations and finally the scan the following day, and I thought I'd be going home with the fibroid removed sometime in the near future. At 8pm the registrar arrived and told me that I had a melon-sized ovarian cyst and that my CA-125 was raised, that the cyst was malignant and when my partner asked if there was any chance it wasn't, was told basically no! I only went to the dotor with a cough! I was allowed to go home for the weekend, but back for a CT scan and the McMillan nurse on Monday morning. You can imagine the weekend we had! I resisted the urge to find further info as I wasn't up to sifting through things I didn't need or want to read at that time. I'm now into finding out as much as I can.
On Monday the McMillan nurse looked through my notes and results, explained everything and told me that the Registrar had basically over-reacted to the CA-125 result(89)and taking everthing we knew into consideration chances of cancer were down to about 40-60 in my favour - it was like floating on air!
I had a consultant change, now gynyae/onc, who seems to be even more positive about the chances of it being just a very large cyst. My new doctor was able to find my left ovary, which is possibly okay, my uterus is normal, the right ovary isn't visible and it looked like it was swallowed up in the cyst, she thought that the mass was actually made up of thousands of small cysts, it looked like foam on the ultrasound picture (any info about this would be useful as I haven't found anything similar so far) and measures approx 24cm x 18cm x 16cm, stretching from behind my uterus, upwards to my umbelicus and across my abdomen mainly to the right. I can't believe I'd never found it, I'm obssessed with poking at it now! I've had a CT scan - hopefully get good results tomorrow on my pre-op visit, and the 'alien being', right ovary (and maybe other ovary and uterus, at the moment that's my decision to make but may change if it needs to come out) and hopefully gall bladder removed on Friday the 4th August.
A week down the line I'm actually able to touch the 'lump' with confidence and yes they do move around! Mine was visibly swollen on the right side of my stomach (I can't usually see it although my stomach is quite pot-bellied, now I know due to the cyst not because I don't exercise!) and was more painful than usual after all the prodding and poking from Dr's. Dependant on how I sit, lie or move it is all over the place. It was mainly on the upper outer right side of my abdomen last week and I could only manage about 300mls of soft food about twice daily without considerable discomfort. Yesterday it dropped right down and I'm feeling a lot of pressure and occasional stabbing pains in my lower pelvis and I literally look pregnant, I can eat a lot more food but feel vaguely nauseous all the time. In bed I can feel pressure dependant how I'm lying, some days I'm always in the bathroom, others not. Because the cyst is so large and position change is very obvious I can now usually predict where will hurt and other oddities by feeling what position it's in when I get up in the morning!
Well I got to the point in the end! Sorry for such a long post but most of it's relevant background information. And it's the first time I've found anything that seems similar, but in some ways different to my situation.
I live in Manchester, where abouts are you? My parents used to take us to Italy, (Florence, Pisa, Poisitano) and my sister lived in Milan for a few years, I've not been back and always wanted to. I decided at 40 that if I hadn't become pregnant I was accepting it and changing my lifestyle accordingly, we go on too many holiday (you can never have too many!) and indulge our cats instead! We were in the DR in Jan and booked for my b'day in October as soon as we got home, it's the chill-out holiday, we go sightseeing in the US inbetween although have to visit Las Vegas each time! I'm so glad we didn't book a busy holiday!
I'm feeling very nervous today, I should get my CT scan results this afternoon and learn a bit more, the question list is getting a little excessive! I'm sure it's more uncomfortable, last night I had to try to sleep on my back with my knees up as it was really nipping when I lay on my sides, I feel like hanging upside down to shake it back up a more comfortable position! I've got to ask for anti-biotics for my chest infection, which was my original problem but keeps being forgotten due to the 'alien', it pulls on the cyst when I cough, I have to hold my stomach and cross my legs now! I don't fancy still having it when I go for surgery, it'll only add to problems. I sound really moany this morning, I've been very cheerful and positive so far, I think that's from the ephoria from being told the picture wasn't as bad as the first gynae Dr painted, and although I feel confident they won't find anything on the CT I've got niggling doubts poking through.
It's nice being able to talk about it with someone going through the same time of not knowing, Darren gets upset and worried and tries to be brave - bless him, I'm more say it how it is and be very flippant, so I feel like I'm having to pussyfoot around sometimes.
I'll let you know what the doctor says later,
Look after yourself, and go and look for very slinky swimsuits that cover that scar and show off your soon-to-be flat stomach!
Stand strong and TRUST that you can deal with whatever is thrown at you. It is HUGE that they think it doesn't look as bad as first thought. HOld on to that as your reason to be positive. And, i don't know if you can tell from my emails, but Humor ALWAYS helps me get through things. For real. It keeps me from getting all serious about life. Life isn't supposed to be super serious and somber. WE get ONE LIFE and we should laugh and love (those are so important...and i don't know how to have love if laughter isn't involved).
That being said - I'm so sorry about the coughing bout. I can't cough really either - w/o pain. And earlier today I sneezed and i thought my whole stomach was going to burst open. ouch! but i'm on the other side now and okay. I couldn't sleep last night either - b/c my little friend (mass) in my stomach is stretching out and if i lay on my back - my back hurts; if i lay on my sides - my sides hurt AND my back hurts. i can't seem to find a good sleeping position. I even put the pillow between my legs (which had been working really well) like i did when i was pregnant. but why not? i look pregnant. i even had someone ask me if i was pregnant. oh, what lovely people are out there these days.
My husband and I used to live in Florence. We originally were going to spend some time in the northern lake region with a side trip to the alto adige (south tyrol/alp-dolomite region) and do some hiking and wine tasting at some vineyards. And then spend one night in vencie (i've already done venice but love the romance that just sort of envelops you after the sun goes down). then we were going to spend a week down south (capri or sicilly - we couldn't decide). now (after this surgery) - i think we are just doing the southern part...so - probably 1 week in capri and 1 week in sicily or just 2 weeks in one of those spots. again, we haven't committed.
my older sister and older brother have both spent some time in the DR and love it there. I hear it is just beautiful!
I actually reside in Kansas City. My sister is now in Estes Park, Colorado (in the mountains outside of Denver). I have a brother outside of Boston, Mass. I have a sister-in-law in Israel, a sister-in-law in California, and another sister-in-law in Texas. So, if you ever want to do a HOUSESWAP to cut costs on vacation - let us know! i'm sure i can arrange it in any of those places (but California is a small studio apt and Israel probably can't happen b/c the family has no money to travel anywhere...he is an archeologist).
But I'm sure you have been dying to get to Kansas City! right? i mean it is world-renowned. I actually like it here. it is beautiful and the people are way nice and there are actually some great restaurants and museums...not a lot of night life though...unless you like movies and pubs.
i'm sorry i'm babbling...it helps distract the mind.
You can make it! and your CT scans are going to be just fine. and when you have the results - WRITE THE FORUM and let us know so that we can support you and help you and congratulate you.
I kind of skipped over some of this so I apologize if I seem to be off point. Anyway, we were concerned about the surgery being done by my obgyn vs gyn oncologist too. Who are you scheduled with now??? I didn't have a choice in the end...my obgyn wants the oncol to do it. We came to that conclusion ourselves anyway...my thing was if the oncol was oncall as a backup I wanted him there asap. I didn't want to be under anesthesia waiting for the gyn to put a call to him...wait for him to not drop everything to get to my surgery. I guess I kind of figured to him it's work and he wouldn't jump out of his seat?? I don't really know how it all works but that was my thinking. Now my husband being a little more rational than me figured the oncologist does 1000's of these where your obgyn might only do 100's. I like the first odds better. I do agree it might come down to comfort level too & insurance forces us sometimes.
Thank you for the chuckle of rather being fat than have a cyst! I love it! I am freaking out a bit hearing about the pains you have. I did not sleep well last night but sometimes I think it's me making myself nuts over it. I sleep with a heat pad trying to shrink my cyst. So far nothing not that I am surprised. Why do you think I haven't had any pain from it? I am glad but a bit curious now? I am not scheduled till 8/22 but the week before we are on vacation at the beach and pain isn't in my plans!
Also, the doctor never had me go for a blood test. I figured it was because they aren't reliable but now I am concerned. Do you think I need one?
I just wanted to say good luck for your surgery tomorrow, I'll be thinking of you. Let me know how you are as soon as you well enough, I haven't got a date for surgery now, but it won't until be after next Friday.
I've discovered a wonderful way of sleeping, I've been lying on my side with the edge of a pillow under the bump for support and it's been working. The ascites is still down but I've been having more pain especially in my back. I've also got a friend of my sister's (who by coincidence is American but living in Italy!)who is a doctor (not gynae) looking information up for me. The McMillan nurse asked me if the doctors had mentioned borderline tumours to me, which they hadn't just said there's possibility that it's a rarer sort of cancer that easier to treat, so I've been looking for info on them today.
Keep thinking of that slinky bikini!
Lots and lots of luck and good wishes, I'll be thinking of you,
Good luck tomorrow Laura! I've been thinking of you this weekend. I know all will go well and look forward to hearing your update. A friend of mine who had this surgery a few years ago said her best advice was get up and walk around a bit as soon as you feel up to it in the hospital. She said it was the best thing she did. Lori
Thanks so much for the well wishes and the prayers and the good thoughts. I was so pleased to find them. I actually got a little teary-eyed (which I pride myself on not doing). Who knew that an on-line friendship with women all across the world struggling with the same issues could be such a comfort to your soul?
I'm heading to the hospital in less than 3 hours now and am desperately trying to finish up tasks (laundry put away in childrens drawers, pantry cleaned out to make room for new groceries, packing my suitcase, writing letters to all my family to tell them how much I love them (just seemed appropriate), paying bills, etc). My husband is right along beside me - carrying all the heavy stuff and dealing with children getting up in the middle of the night. Its just so weird how you go into "ACTION MODE". And i am so thankful for it - otherwise i'd be an emotional wreck. I'm not really worried about the surgery - nor am I worried that they are going to find anything other than a benign tumor - I'm more worried about the enema that i have to give myself in about 2 hours! I am willing to do ANYTHING - but please don't make me do that!!!! is there anyone else out there who can agree with me on this one?
I think I'll pack a picture of a itsy bitsy teenie bikini and hang it on my hospital room wall - to keep me focused on the goal in sight. I'm hoping it will motivate me to get up and walk as soon as i can. or, maybe now that i think about it, perhaps i'll take a picture of an ice cream sundae to motivate me to get out of the bed. Whatever works - right?
Well, ladies, i'll get back to you as soon as I possibly can. I'm sure that I will be desperate to hear how you are doing and what - if any - progress has been made.
Take care of yourself and know that I'm thinking about you,
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