Aa
Help wanted for questions to ask Gyn........
Hi all,
First time posting, but having been reading site for a few weeks, and guess I'm self diagnosing. I have had multiple abdom surgeries, appentectomy, 2x ceasarians, hysterectomy, and moderate hernia repair and removal of adhesions. My last surgery was 2003 for hernia repair after MVA. Since then I have had nagging pain in right ovary area, that was initially treated as nerve pain associated with titanium screw used to anchor mesh for hernia repair. My episodes of acute pain started about 12 months ago, and 9 weeks ago I was hospitalised for pain relief. An ultrasound was performed, as well as a vaginal U/S and I was told I had a 6.5cm cyst in right ovary, and a 3cm one in left ovary. I was also given a CA-125 test, which I had never heard of before, so have no idea of the reading. Anyway, I am having my follow up appointment in three days time and want to know exactly what I should be asking. In the past 9 weeks, I have had numerous episodes of this excrutiating pain, and have been stuck in bed with megadoses of pain relief and heatpacks(the only thing that gives me some sort of relief). A couple of times I have wanted to go back to ER, but am to scared to, as once in hospital they don't give me enough pain relief, though no meds stop the pain. When I was in hospital they were talking operating, but said because of all my previous surgeries, and my last surgery report, they are hesitant, because apparently it is very messy inside. I know I can't take this pain much longer, and I also have every symptom of OVCA, weight gain around abdomen, frequent urine, pain with ribbon type bowel movements etc. What I need to know, is when is it just ovarian cysts or ovarian cancer??? Any advice would be greatly appreciated, as I'm 46 with a ten yr old at home and I work full time, when I'm not stuck in bed.
First time posting, but having been reading site for a few weeks, and guess I'm self diagnosing. I have had multiple abdom surgeries, appentectomy, 2x ceasarians, hysterectomy, and moderate hernia repair and removal of adhesions. My last surgery was 2003 for hernia repair after MVA. Since then I have had nagging pain in right ovary area, that was initially treated as nerve pain associated with titanium screw used to anchor mesh for hernia repair. My episodes of acute pain started about 12 months ago, and 9 weeks ago I was hospitalised for pain relief. An ultrasound was performed, as well as a vaginal U/S and I was told I had a 6.5cm cyst in right ovary, and a 3cm one in left ovary. I was also given a CA-125 test, which I had never heard of before, so have no idea of the reading. Anyway, I am having my follow up appointment in three days time and want to know exactly what I should be asking. In the past 9 weeks, I have had numerous episodes of this excrutiating pain, and have been stuck in bed with megadoses of pain relief and heatpacks(the only thing that gives me some sort of relief). A couple of times I have wanted to go back to ER, but am to scared to, as once in hospital they don't give me enough pain relief, though no meds stop the pain. When I was in hospital they were talking operating, but said because of all my previous surgeries, and my last surgery report, they are hesitant, because apparently it is very messy inside. I know I can't take this pain much longer, and I also have every symptom of OVCA, weight gain around abdomen, frequent urine, pain with ribbon type bowel movements etc. What I need to know, is when is it just ovarian cysts or ovarian cancer??? Any advice would be greatly appreciated, as I'm 46 with a ten yr old at home and I work full time, when I'm not stuck in bed.
Hi Gail, thankyou so much for your reply. I have a whole list of questions to ask. My appointment is with Gyn at large public hospital, but I will definately be asking for a second opinion if I'm not happy with the direction it all starts heading. I'm fairly sure they are going to remove both my ovaries, as that was what they were talking about when I was in there last, and probably more the way I want to go after all the pain I've been experiencing. Anyways, fingers crosssed, I'll let you know what happens after my appointment tomorrow,
cheers Maurita
cheers Maurita
COMMUNITY LEADER
Hi,
It sounds like you've already been through enough already not to have a doctor take you seriously enough. First off, the CA 125 measures a protein secreted by ovarian cancer. Other things in the body can also secrete that same protein, though, so it is not entirely accurate, especially if you are pre-menopausal. Since you never heard any more about it, I assume your numbers came back in the normal range, or only slightly elevated. However, there are women here who's cancer is highly sensitive to the CA 125, and others who never showed an increase at all. So it's hard to call it a diagnostic tool. The pain and bloating you are experiencing can occur with all cysts, whether malignant or benign. In fact, the only way to know for sure if it is ovarian cancer is to take a biopsy during surgery. The odds are on your side, however. Ovarian cysts average anywhere from 90% to 95% benign.
The first question I would be asking is the results of the CA 125. Although not completely accurate, if it is extremely high, then it can be a clue. Most doctors use a scale of 0-35 as normal, but make sure that is the scale your doctor is using. My former Oncologist used a scale where 0-20 was normal. It's just a difference in the labs doctors use.
Second, don't let him skirt around the subject. Ask what he intends to do about the cysts. Be sure he knows how much pain you are in. Tell him how it is affecting your daily life. If he's willing to let you continue to suffer, find another doctor.
Third, if he decides they need to be removed, as him for a referral to see a Gynecological Oncologist. If he won't give you one, then find one yourself. It is important a GYN/ONC do the surgery just in case it is cancer. That's not saying I think it is, but you don't want to take chances with getting it done, and getting it done right. A GYN/ONC has 3-4 additional years of training in disorders of the reproductive system, and is highly skilled in removing it the right way.
If you go to the doctor alone, bring along a little tape recorder if you can. There is so much information to learn, and with being a little nervous, it's possible you might miss something he says. Even if you're taking notes, you could miss something. If you can, bring a friend along to take notes.
Best wishes to you. Please let us know what you find out. In the meantime, come back any time with questions you have, or just to vent. We understand what it's like!
Gail
It sounds like you've already been through enough already not to have a doctor take you seriously enough. First off, the CA 125 measures a protein secreted by ovarian cancer. Other things in the body can also secrete that same protein, though, so it is not entirely accurate, especially if you are pre-menopausal. Since you never heard any more about it, I assume your numbers came back in the normal range, or only slightly elevated. However, there are women here who's cancer is highly sensitive to the CA 125, and others who never showed an increase at all. So it's hard to call it a diagnostic tool. The pain and bloating you are experiencing can occur with all cysts, whether malignant or benign. In fact, the only way to know for sure if it is ovarian cancer is to take a biopsy during surgery. The odds are on your side, however. Ovarian cysts average anywhere from 90% to 95% benign.
The first question I would be asking is the results of the CA 125. Although not completely accurate, if it is extremely high, then it can be a clue. Most doctors use a scale of 0-35 as normal, but make sure that is the scale your doctor is using. My former Oncologist used a scale where 0-20 was normal. It's just a difference in the labs doctors use.
Second, don't let him skirt around the subject. Ask what he intends to do about the cysts. Be sure he knows how much pain you are in. Tell him how it is affecting your daily life. If he's willing to let you continue to suffer, find another doctor.
Third, if he decides they need to be removed, as him for a referral to see a Gynecological Oncologist. If he won't give you one, then find one yourself. It is important a GYN/ONC do the surgery just in case it is cancer. That's not saying I think it is, but you don't want to take chances with getting it done, and getting it done right. A GYN/ONC has 3-4 additional years of training in disorders of the reproductive system, and is highly skilled in removing it the right way.
If you go to the doctor alone, bring along a little tape recorder if you can. There is so much information to learn, and with being a little nervous, it's possible you might miss something he says. Even if you're taking notes, you could miss something. If you can, bring a friend along to take notes.
Best wishes to you. Please let us know what you find out. In the meantime, come back any time with questions you have, or just to vent. We understand what it's like!
Gail
Just realised that may have sounded wrong "just ovarian cysts" when I know exactly how painful they are. What I meant was, how long should they be monitering these things, before they become more than that??? Also hope I don't sound like a whinger, but it has become a normal part of my life to come up against challenges, especially with my health, so I tend to just go with the flow and believe doctors, though I am starting to doubt their advice, as I don't think they realise how much pain affects your everyday life.
Have an Answer?
You are reading content posted in the Ovarian Cancer Community
Learn how to spot the warning signs of this “silent killer.”
Diet and digestion have more to do with cancer prevention than you may realize
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
