Aa
Should I push for further help.
I am a 45yr female, regular period, heavy and long history endometriosis. 3 live births ( one g.i.f.t) and one ruptured ectopic preg 7yrs ago. For nearly two years have been having extended pain associated with period. Few days prior and sometimes up to two weeks after. Period pain severe with fainting and clots particularly first 3 days.
I had u/s some months ago, showing remaining ovary 13.6cc, and arising from is a dominant hypoechoic lesion measuring 15mm and demonstrates a prominent nodule at it's periphery. No free fluid seen. The lesion contains a focal echogenic nodule at its base.
My doctor said it's a cyst, did a ca125 ( result ok) and said no further intervention unless I want a hysterectomy to control my endometrial pain. I don't thank you very much MR doctor.
I am in pain for 3 out of 4 weeks. Heavy congestion pelvic area, cramping. Becoming increasingly incontinent. Bloated and severe lower back pain. I know my doctor thinks I am a hypercondriac or seeking strong pain killers, which I am!!! I am getting depressed trying to work or sleep, and so tired all the time ( don't know if related but pain wakes me, particularly if bladder gets filled.
I don't know what to do. Do I just have a low pain threshold, or do I need to demand further investigation. I dont want to make a fuss, and if this doesn't sound like something serious I will just live with it.
Help!
I had u/s some months ago, showing remaining ovary 13.6cc, and arising from is a dominant hypoechoic lesion measuring 15mm and demonstrates a prominent nodule at it's periphery. No free fluid seen. The lesion contains a focal echogenic nodule at its base.
My doctor said it's a cyst, did a ca125 ( result ok) and said no further intervention unless I want a hysterectomy to control my endometrial pain. I don't thank you very much MR doctor.
I am in pain for 3 out of 4 weeks. Heavy congestion pelvic area, cramping. Becoming increasingly incontinent. Bloated and severe lower back pain. I know my doctor thinks I am a hypercondriac or seeking strong pain killers, which I am!!! I am getting depressed trying to work or sleep, and so tired all the time ( don't know if related but pain wakes me, particularly if bladder gets filled.
I don't know what to do. Do I just have a low pain threshold, or do I need to demand further investigation. I dont want to make a fuss, and if this doesn't sound like something serious I will just live with it.
Help!
Pain definitely IS a syptom of Ovarian Cancer. That doctor should be ignored!Check out the ovarian cyst forum, there are plenty of women who will be able to comment that their cysts (whether small or large) have caused pain.
Before jumping straight to a MRI, you should have a repeat ultrasound and ensure it is a transvaginal as these are often more sensitive. This will enable the Gyn to compare the result from a few months back and see if the cyst is changing. This is worth trying before going straight to a MRI. This will help justify the MRI (and avoid potential insurance coverage issues). The MRI would also diagnose endometriosis if that is the cause of the pain.
Go find a different GYN - one that is sympathetic. If the only option given for endometrial pain is a hysterectomy, the Dr isn't trying. Laparoscopy is definitely a good option for helping to diagnose the pain and generally check things out however there are other checks that could be done such as hysterescopy which will look inside your uterus and check the lining in case it problematic. A good gyn will look at all options and not just offer hysterectomy - this is a lazy option (cut it out rather than identify the problem).
There are many posisble causes of your pain, be your own advocate and seek a sympethetic competent gyn. You may benefit from finding a gyne/onc if you think surgery is on the horizon as they do many many more surgeries.
Good luck.
Before jumping straight to a MRI, you should have a repeat ultrasound and ensure it is a transvaginal as these are often more sensitive. This will enable the Gyn to compare the result from a few months back and see if the cyst is changing. This is worth trying before going straight to a MRI. This will help justify the MRI (and avoid potential insurance coverage issues). The MRI would also diagnose endometriosis if that is the cause of the pain.
Go find a different GYN - one that is sympathetic. If the only option given for endometrial pain is a hysterectomy, the Dr isn't trying. Laparoscopy is definitely a good option for helping to diagnose the pain and generally check things out however there are other checks that could be done such as hysterescopy which will look inside your uterus and check the lining in case it problematic. A good gyn will look at all options and not just offer hysterectomy - this is a lazy option (cut it out rather than identify the problem).
There are many posisble causes of your pain, be your own advocate and seek a sympethetic competent gyn. You may benefit from finding a gyne/onc if you think surgery is on the horizon as they do many many more surgeries.
Good luck.
Thank you for taking such time out to answer my question. I shall ask my doctor for an MRI, and if that is inconclusive, and I am still in pain, I will certainly have a laparoscopy, if only to remove the endometriosis, and surely if there is something there it will show up.
I hope your wife is doing okay, I ask reluctantly because from what I have read about ovarian cancer, it's not one of the ones that respond too well to treatment.
I dont think I am afraid of dying, but I am petrified of pain, and this pain has me having nightmares of dying a very painful death most nights now. It would be nice to have some sort of answer at least for my state of mind.
Funnily enough I did see a different doctor for pain killers a few months back, and she told me that pain was not a symptom of ovarian cancer, so with doctors like that, you can probably see why I am starting to question my own sanity and feel like a big hypochondriac. I hope your wife's disease was diagnosed early. Seems most go undetected till its too late. Seems few doctors are on the ball when it comes to emotional women!
Enjoy your weekend. Thanks and God bless you
Elizabeth
I hope your wife is doing okay, I ask reluctantly because from what I have read about ovarian cancer, it's not one of the ones that respond too well to treatment.
I dont think I am afraid of dying, but I am petrified of pain, and this pain has me having nightmares of dying a very painful death most nights now. It would be nice to have some sort of answer at least for my state of mind.
Funnily enough I did see a different doctor for pain killers a few months back, and she told me that pain was not a symptom of ovarian cancer, so with doctors like that, you can probably see why I am starting to question my own sanity and feel like a big hypochondriac. I hope your wife's disease was diagnosed early. Seems most go undetected till its too late. Seems few doctors are on the ball when it comes to emotional women!
Enjoy your weekend. Thanks and God bless you
Elizabeth
Your symptoms definitely warrant a very thorough work -up by a GYN/Oncologist, if your current GYN does not take you serious then you need to find another!!
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010. Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx). A transvaginal ultrasound (TV) is a valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts. MRI's give much more in detail>
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other cuases of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery(biopsy) will be the only way for the Dr's too make a definitive Dx. It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be. Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.
Since there is now suspicion based on your TV-sonogram I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients. This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal.
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a Radiologist that specializes in GYN/ONC, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best
Kevin
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010. Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx). A transvaginal ultrasound (TV) is a valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts. MRI's give much more in detail>
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other cuases of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery(biopsy) will be the only way for the Dr's too make a definitive Dx. It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be. Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.
Since there is now suspicion based on your TV-sonogram I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients. This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal.
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a Radiologist that specializes in GYN/ONC, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best
Kevin
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