Aa
surgery for complex ovarian cyst?
First of all, I'm 41, and have a blood disorder, Protein C deficiency, discovered in '03 when i had a clot in my lung. I take coumadin, had to go off the pill, and avoid any sort of hormones. Periods have been heavy, but pretty regular.
My problems began in April: several 'periods'& spotting in between. also fatigued, some pain during intercourse, and lower back pain. Endo biopsy, negative. Ultrasound showed a 'cyst with septation'on the right ovary. Watch and wait, the gyn said, also, a Ca125: 30.
Next US, July, showed no cyst, no mass, but a '6.0 mm rounded hypoechoic area, possibly representing a small fibroid..'Again, watch and wait.
Oct. US: 'probable discrete anterior right fundal fibroid 8mm' and 2 cm complex cyst on r ovary 'w/low level internal echoes, likely rep. a heorrhagic cyst, though underlying endometrioma or solid lesion can't be excluded. further eval w/mri recommended; left ovar only seen trans/ab app normal'
gyn at this point still wanting to wait, but ref me to onc/gyn at my insistence.
repeated ca125:22. onc/gyn very dismissive, 'watch and wait', but did say he'd rec surgery if cyst still there in 3 mos.
Jan: ca125:20, us showed complex cyst on right ovary, still 2 cm, also a 2cm comp cyst on the left ovary! Only heard results over phone, didn't see actual report, but gyn wants to see me Mon, 2-6. onc/gyn appt. 2-14
Not sure if I should push for surgery, an MRI, a second opinion? surgery means alternative to coumadin, i think. also, worry about recovery time/work
Hate these dismissive docs/feel i am only one looking at big pic
nin
My problems began in April: several 'periods'& spotting in between. also fatigued, some pain during intercourse, and lower back pain. Endo biopsy, negative. Ultrasound showed a 'cyst with septation'on the right ovary. Watch and wait, the gyn said, also, a Ca125: 30.
Next US, July, showed no cyst, no mass, but a '6.0 mm rounded hypoechoic area, possibly representing a small fibroid..'Again, watch and wait.
Oct. US: 'probable discrete anterior right fundal fibroid 8mm' and 2 cm complex cyst on r ovary 'w/low level internal echoes, likely rep. a heorrhagic cyst, though underlying endometrioma or solid lesion can't be excluded. further eval w/mri recommended; left ovar only seen trans/ab app normal'
gyn at this point still wanting to wait, but ref me to onc/gyn at my insistence.
repeated ca125:22. onc/gyn very dismissive, 'watch and wait', but did say he'd rec surgery if cyst still there in 3 mos.
Jan: ca125:20, us showed complex cyst on right ovary, still 2 cm, also a 2cm comp cyst on the left ovary! Only heard results over phone, didn't see actual report, but gyn wants to see me Mon, 2-6. onc/gyn appt. 2-14
Not sure if I should push for surgery, an MRI, a second opinion? surgery means alternative to coumadin, i think. also, worry about recovery time/work
Hate these dismissive docs/feel i am only one looking at big pic
nin
Thanks, NP, I appreciate your comments. I have been wondering about hormone levels - spent the last few months wondering if I'm in perimenopause. The symptoms seem to point to it, but doctors don't show any interest in considering this. I will ask about it tomorrow.
I've been wondering about the connection between hormone fluctuations, the cyst, peri-menopause symptoms, and my blood disorder. It seems like if I'm in peri, and having symptoms related to hormone level changes, I could be getting cysts from this, right? But if the way to regulate it is with hormone supplements, bcp, or creams, etc, I'm out of luck, since I can't take hormones.
Anyway, just more to think about.
Nina
I've been wondering about the connection between hormone fluctuations, the cyst, peri-menopause symptoms, and my blood disorder. It seems like if I'm in peri, and having symptoms related to hormone level changes, I could be getting cysts from this, right? But if the way to regulate it is with hormone supplements, bcp, or creams, etc, I'm out of luck, since I can't take hormones.
Anyway, just more to think about.
Nina
Well, from the progression of the reports it seems you had a small cyst in May which by the second US in July, had resolved as they often do (doesn't mean they missed it). But, at the time of the second US it seems a second and separate problem was identified and continues. The third US reveals a recurrance of an ovarian growth along with a clear continuance of the uterine growth. And your latest US reveals a growth on each ovary as well as very slight increase in the size of your uterine growth. Of course, your reproductive organs being entities in a system, I'm sure in some way each growth is related. Probably due to hormone imbalances, who knows. Have you had hormonal blood levels checked?
Upon discovery, it was uncertain if the growth within your uterine muscle wall (myometrium) was:
1) muscle tissue (a fibroid) tumor, or
2) an overgrowth of your normal uterine glandular tissue (adenomyosis) which would be fluid filled.
Now that the growth is slightly larger, it seems they have been able to identify it as a fibroid tumor. Those can become massive and very uncomfortable. Also, the Left ovary may have previously been visually blocked by the uterus and related growths. That is the problem with US and why I recc the MRI. The MRI will clearly picture each growth and what type of tissue they are, AND how they relate to each other and with your normal tissues. However, if your doc plans to do surgery the MRI may be an un-necessary expense as these things will be discovered at time of removal and inspection. Although, it may be worth the peace of mind.
The cysts would not necessarily resolve when you menstruate depending on the reason for their growth and they type of growth.
Also, they will take you off coumadin for your surgery which you realise is a risk, and probably put you on Lovenox to prevent clots but decrease risk for bleeding. Good lick tomorrow.
Upon discovery, it was uncertain if the growth within your uterine muscle wall (myometrium) was:
1) muscle tissue (a fibroid) tumor, or
2) an overgrowth of your normal uterine glandular tissue (adenomyosis) which would be fluid filled.
Now that the growth is slightly larger, it seems they have been able to identify it as a fibroid tumor. Those can become massive and very uncomfortable. Also, the Left ovary may have previously been visually blocked by the uterus and related growths. That is the problem with US and why I recc the MRI. The MRI will clearly picture each growth and what type of tissue they are, AND how they relate to each other and with your normal tissues. However, if your doc plans to do surgery the MRI may be an un-necessary expense as these things will be discovered at time of removal and inspection. Although, it may be worth the peace of mind.
The cysts would not necessarily resolve when you menstruate depending on the reason for their growth and they type of growth.
Also, they will take you off coumadin for your surgery which you realise is a risk, and probably put you on Lovenox to prevent clots but decrease risk for bleeding. Good lick tomorrow.
Thanks for all your input. You guys are great!
I will definitely keep pushing for better care, mary, and I guess I should ask for an MRI. Do they really give a better picture, and will they be able to tell more about the makeup of the cysts?
NursePatient, nice to hear you have experience with anticoagulation. My INRs have been pretty steady, around 2.1, which is where they like it to be.
As for dissimilar ultrasounds, it has bothered me, too.
May: showed a 2cm cyst w/septation on R ovary. uterus, L ov normal
July: showed no cysts, but a '6mm hypoechoic area within the myometrium, possibly representing a small fibroid, or a focus of adenomyosis'(what's that?)
(this report seemed the least detailed)
October: showed a 2cm complex cyst on r ovary, 'likely representing a hemorrhagic cyst, though underying endometrioma or solid lesion cannot be excluded' 'probable discreet anterior right fundal fibroid' in uterus 8mm L ovary only seen transabdominally , appears grossly normal'
January: haven't read report, but nurse reported 'no change in complex cyst on right ovary' and another cyst, complex, on left ovary, both about 2cm.
So, it doesn't seem as if the cysts are growing. Not sure if they are recurring, or persisting, since that july us showed none. Wouldn't a cyst that resolves resolve once I menstruate? the October us was done during my period, and showed a cyst during that time.
If it is a hemorrhagic cyst, or some other noncancerous type, is it still important to remove? do my symptoms make a difference in deciding?
I know I will ask the doc tomorrow, but like to be prepared with my questions, options, before I'm lying on my back with my feet in stirrups.
Thanks, again,for all your input. I have learned a lot from reading your posts.
Nina
P.S.the sun is shining today in Chicago, and that's one more thing I am grateful for!
I will definitely keep pushing for better care, mary, and I guess I should ask for an MRI. Do they really give a better picture, and will they be able to tell more about the makeup of the cysts?
NursePatient, nice to hear you have experience with anticoagulation. My INRs have been pretty steady, around 2.1, which is where they like it to be.
As for dissimilar ultrasounds, it has bothered me, too.
May: showed a 2cm cyst w/septation on R ovary. uterus, L ov normal
July: showed no cysts, but a '6mm hypoechoic area within the myometrium, possibly representing a small fibroid, or a focus of adenomyosis'(what's that?)
(this report seemed the least detailed)
October: showed a 2cm complex cyst on r ovary, 'likely representing a hemorrhagic cyst, though underying endometrioma or solid lesion cannot be excluded' 'probable discreet anterior right fundal fibroid' in uterus 8mm L ovary only seen transabdominally , appears grossly normal'
January: haven't read report, but nurse reported 'no change in complex cyst on right ovary' and another cyst, complex, on left ovary, both about 2cm.
So, it doesn't seem as if the cysts are growing. Not sure if they are recurring, or persisting, since that july us showed none. Wouldn't a cyst that resolves resolve once I menstruate? the October us was done during my period, and showed a cyst during that time.
If it is a hemorrhagic cyst, or some other noncancerous type, is it still important to remove? do my symptoms make a difference in deciding?
I know I will ask the doc tomorrow, but like to be prepared with my questions, options, before I'm lying on my back with my feet in stirrups.
Thanks, again,for all your input. I have learned a lot from reading your posts.
Nina
P.S.the sun is shining today in Chicago, and that's one more thing I am grateful for!
Nina
I definetely recommend the MRI. An US gives a sort of dull picture and the results sound pretty inconclusive.
As far as I know, fibroid tumors are not generally likely to bleed, therefore your risk for hemmorage is low in my (inexperienced with this matter) opinion. A fibroma/fibroid is a mass solid tissue of which there really is nothing to rupture or bleed from. It grows within the musculature of the uterine wall, but if you experience unusual, bright red and runny heavy bleeding from your vagina you need immediate medical attention. Especially if accompanied by pain. I imagine the risk for bleeding with any solid tumor is near equal.
A large cyst with it's own blood supply (like mine was) may be concerning, especially if it's filled with fluid. This would probably make it more likely to burst. In the process of bursting comes the risk of bleeding, most notably because you are on anticoagulation therapy with Coumadin/warfarin. What have your INRs been running over the last 2 months?
Cyst means "fluid filled sac". It can be filled serous(watery) fluid, mucinous (like it sounds, snotty) fluid, blood(new or old blood) which sounds like a hemmoragic cyst. Or a mixture of fluid with solids such as a teratoma.
I find it odd that over such a long span of time and with multiple sonograms the US diagnostic doc's impressions are so dissimilar. Is it growing?
I reiterate the usefulness of an MRI. Any which way, they will likely perform surgery with your consent and then the diagnosis will be conslusive.
I definetely recommend the MRI. An US gives a sort of dull picture and the results sound pretty inconclusive.
As far as I know, fibroid tumors are not generally likely to bleed, therefore your risk for hemmorage is low in my (inexperienced with this matter) opinion. A fibroma/fibroid is a mass solid tissue of which there really is nothing to rupture or bleed from. It grows within the musculature of the uterine wall, but if you experience unusual, bright red and runny heavy bleeding from your vagina you need immediate medical attention. Especially if accompanied by pain. I imagine the risk for bleeding with any solid tumor is near equal.
A large cyst with it's own blood supply (like mine was) may be concerning, especially if it's filled with fluid. This would probably make it more likely to burst. In the process of bursting comes the risk of bleeding, most notably because you are on anticoagulation therapy with Coumadin/warfarin. What have your INRs been running over the last 2 months?
Cyst means "fluid filled sac". It can be filled serous(watery) fluid, mucinous (like it sounds, snotty) fluid, blood(new or old blood) which sounds like a hemmoragic cyst. Or a mixture of fluid with solids such as a teratoma.
I find it odd that over such a long span of time and with multiple sonograms the US diagnostic doc's impressions are so dissimilar. Is it growing?
I reiterate the usefulness of an MRI. Any which way, they will likely perform surgery with your consent and then the diagnosis will be conslusive.
I hope someone on this site can help me, since you all sound so knowledgeable and supportive.
I'm really trying not to freak out, but it seems like the doctors are not being thorough. The regular gyn is now on maternity leave, so i'm seeing her 'stand-in' monday. She has never seen me, and I can only hope she will review the four us reports!
The onc/gyn i saw three months ago was very dismissive, even saying that he could 'do surgery to remove everything, if i was morbidly anxiuous!'. He didn't seem to think my symptoms, or a complex cyst, were serious, and implied I was wasting his time.From my research, I'm noticing that a complex cyst usually requires further workup, but that hasn't been the case for me, so far. Admittedly, the blood disorder complicates having surgery, but I still feel like I've gotten the runaround for nine months now.
Also, the us reports vary from month to month, in amount of info and detail. The only us report that showed no cyst, in July, had very little detail, and no measurements. Makes me wonder if an inexperienced tech did it? Could they have missed a cyst? And why would they not look farther if they could not visualize the left ovary transvaginally? this recent us is the first one to mention a cyst on the left ovary.
Now I'm sounding like a paranoid, ranting nut, but I've been bottling up my worries for a long time now, and I'm really scared about the possibilty of surgery, and what that may discover.
Thanks in advance for any insights.
nina
I'm really trying not to freak out, but it seems like the doctors are not being thorough. The regular gyn is now on maternity leave, so i'm seeing her 'stand-in' monday. She has never seen me, and I can only hope she will review the four us reports!
The onc/gyn i saw three months ago was very dismissive, even saying that he could 'do surgery to remove everything, if i was morbidly anxiuous!'. He didn't seem to think my symptoms, or a complex cyst, were serious, and implied I was wasting his time.From my research, I'm noticing that a complex cyst usually requires further workup, but that hasn't been the case for me, so far. Admittedly, the blood disorder complicates having surgery, but I still feel like I've gotten the runaround for nine months now.
Also, the us reports vary from month to month, in amount of info and detail. The only us report that showed no cyst, in July, had very little detail, and no measurements. Makes me wonder if an inexperienced tech did it? Could they have missed a cyst? And why would they not look farther if they could not visualize the left ovary transvaginally? this recent us is the first one to mention a cyst on the left ovary.
Now I'm sounding like a paranoid, ranting nut, but I've been bottling up my worries for a long time now, and I'm really scared about the possibilty of surgery, and what that may discover.
Thanks in advance for any insights.
nina
thanks for responding. I agree that I will insist on a more thorough discussion of my results and options on Monday, and will ask if there's another onc/gyn she can refer me to.
It sounds like you had a better us experience this time - how great that your doc included you in the process! It sounds like she knew what she was doing, too.
It sounds like you had a better us experience this time - how great that your doc included you in the process! It sounds like she knew what she was doing, too.
Well, you can start by kindly but firmly insisting that the new doctor review your ultrasounds and other tests and discuss them with you. It may very well be that this new doctor will treat you with the attention and concern that you deserve. And if you have an option for yet another opinion with another gyn oncologist, then it might be worth your time to have a second opinion from a specialist. If all the doctors agree, then you will feel more comfortable with the diagnosis.
I had an appointment yesterday, and my doctor did an ultrasound in office. She set the screen where I could see it. Then we went image by image through my reproductive system and the surrounding tissues. I have a much better understanding of what the pathologist sees when interpreting these ultrasound pictures. My doctor showed me the cysts on my ovary, and told me what stage of development they appeared to be in. If you can get your doctor to do this for you, then you will feel better about whatever decision you choose to make.
I had an appointment yesterday, and my doctor did an ultrasound in office. She set the screen where I could see it. Then we went image by image through my reproductive system and the surrounding tissues. I have a much better understanding of what the pathologist sees when interpreting these ultrasound pictures. My doctor showed me the cysts on my ovary, and told me what stage of development they appeared to be in. If you can get your doctor to do this for you, then you will feel better about whatever decision you choose to make.
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