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Post by Luminosity on Feb 24, 2012 23:51:34 GMT -5
Okay, so you guys now about alot of what I have been through by viewing my introduction, but now I have some questions, doubts and just plain frustration! So I have had a total of 5 cysts on my right ovary - all functional. Now my question is -If I have Endo then why are all my cysts "functional" and not endometriomas? I thought women with Endo got those types of cysts on ocassion. I am not sure if any of mine have been endometriomas. Dr's tell me my cysts are "normal". The smallest cysts can weak havoc on my body. My newest cyst is a 2.2 corpus luteum and before I found out I had it I had a second period that was pretty heavy and I started getting hot flashes. Can a woman with Endo develop many cysts, but all of them are functional? Also, I have had some kidney issues, not awful, but they still caused problems for me. I have had calcium deposits on my right kidney (notice how everything is on the right side} I have also had "gravel" in that same kidney years ago. My Dr. thinks I have endo on my uterosacral (sp?) ligament. Is there any correlation between endo and kidney issues like I have had? I am trying to figure myself out. I am scared to have a laparoscopy (want it but scared) because I am afraid they will find NOTHING and then I will just look stupid and weak for not being able to handle my periods. I am starting to doubt whether I even have endometriosis because I have heard so many Drs say that I am just nervous and just having bad periods. They tell me it's "normal". My hormones rule my life, my pain rules my life, my cysts rule my life. I WANT MY LIFE BACK! I am terrified to always be seen as just a scared little girl who can't possibly have anything wrong. I don't feel right! I am afraid they won't find the cause of my pain. What if I come out with no diagnosis? I could never face my drs again. Some may even openly laugh if nothing is found I feel like screaming lol...........ahhhhhhhhhhhh!!!!!! Thanks for reading and for any help you give.
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Post by angelicky on Feb 25, 2012 6:39:40 GMT -5
i've never had any cyst, so my knowledge isn't too good. But there are more types of cyst, and even if a woman has endo she can still get the other types of cysts.
Get the laparoscopy done, i was scare about getting told there was nothing, but deep down i knew i had it, and i think you know too. I'm glad i got it done
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Post by Luminosity on Feb 25, 2012 6:52:46 GMT -5
i've never had any cyst, so my knowledge isn't too good. But there are more types of cyst, and even if a woman has endo she can still get the other types of cysts. Get the laparoscopy done, i was scare about getting told there was nothing, but deep down i knew i had it, and i think you know too. I'm glad i got it done Hello Yes, I will get it done. It's just hard hearing that it's basically all in my head. I've heard it for years, but something isn't quite right. My favorite is when they blame my rectal pain on my acid reflux! Whats next? ..... that my terrible sciatic leg pain with periods is also due to acid or anxiety? LOL. Didn't you know that acid and anxiety are the leading causes of like EVERYTHING?? LOL! Well, thank you for reading and responding to my post and its nice to meet you
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Post by JC on Feb 25, 2012 8:40:09 GMT -5
Just reading your post makes me feel angry for you! It never feels good to have your doctor tell you that things are in your head. I have been through that so many damn times that I want to scream! And I've had some pretty serious health problems that were blamed on stress and anxiety. Stupid. Here's my take on painful periods, YES we know they are a pain in the ass, YES we know our hormones fluctuate, and YES we KNOW they can hurt sometimes. But what I don't agree with is having a period completely derailing your entire life to where you can't even function. THAT IS NOT NORMAL. We all understand that there are certain levels of discomfort we have to experience. That's just an inherently quality of being female. It shouldn't be a disability though! About your cysts, are they just coming and going or do you currently have 5 cysts sitting on your ovary right now? Normally we get those functional cysts that come and go with our cycles but they're supposed to go away. Having 5 of them at one time isn't normal. Doctors seem to think that simple cysts don't cause pain. I tend to disagree with that because although most women don't feel those cysts, I think that some women CAN feel them and CAN get pain with them, especially those of us with endo. When they see these cysts on an ultrasound, they can generally classify if they are an endometrioma or not based on how they look. Endometriomas on the ultrasound look solid and "functional" cysts look fluid filled. Ultrasounds can't diagnose you with endo though so they can get a good guess at what these cysts are doing on an ultrasound but they really can't confirm it unless you have the lap. I think what you need most right now is that ONE doctor that will take you seriously. I really hope that new doctor you have is the one. Once you find that doctor that will listen, it's usually then that you start to get answers and help. It's really difficult to keep pushing for answers especially when you are treated poorly by your doctor. But always keep in mind that you know your body better than they do and if you don't feel right then keep looking for a doctor that will help you. I wish it didn't have to be like this because all doctors should take us seriously and listen.
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Post by Karen on Feb 25, 2012 13:46:28 GMT -5
Here's a post on cysts: endo-resolved.proboards.com/index.cgi?board=related&action=display&thread=2150 Might be worth a read! Though I'm not an expert on cysts, there are a few common things we see about cysts around here. Some women with endo do, in fact, have endometriomas on their ovaries. Not everyone with endo has them, though. Often, a doctor can make an educated guess if the ultrasound does show endometriomas, but only a lap can confirm that. Have you heard of PCOS? Several women that have endo also have PCOS, and some women with PCOS have issues with cysts (though not all do). It may be another thing to consider. However, with your history of pelvic and rectal pain, I'd suspect endo would be the main culprit. And as for your doctors not taking you seriously, man, that just infuriates me. The thing that really ticks me off is that if a man were to go to the ER with severe pains like that, they'd be treated immediately. If a woman goes in for that type of pain, they are told it's in their heads. Men don't have the hormonal fluctuations that women do, so they don't have the same types of problems they do. But medical professions for some reason take men so much more seriously than women. It's sickening to think about. I wonder where this stereotype starts - medical school? Society? Drug companies? Whatever the case, there's an entire industry out there that's making a ton of money by not treating women properly the first time and getting to the root of issues. Although I think it's a difficult stereotype to overcome, I hope women like us keep yelling and screaming and changing the minds of these doctors, one at a time. Trust your gut and keep pushing for help! Although I would never wish endo on anyone, I'd love to see the looks on the faces of the doctors that didn't believe if you do, in fact, have endo. I hope you get some answers soon, and even if you're not seeing any of those awful medical professionals anymore, I hope you'd consider sharing your results (when you get them) with them, just so they understand how badly they dropped the ball with your care. Although you may not get all the answers or help you need all at once - few of us do - help is on the way. And so is relief. Hang in there! It's NOT in your head! I mean, I know women are smart and talented, but I have yet to meet a woman that a) WANTS the type of pain you're having and b) can somehow make their bodies feel it. I have no idea why any MEDICAL professional would even think that way, especially since they're so trained in biology. Ok, I'm getting off my soapbox now...
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Post by JC on Feb 25, 2012 18:15:47 GMT -5
But medical professions for some reason take men so much more seriously than women. It's sickening to think about. OMG don't EVEN get me started. I go into a rage about this topic. LOL
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Post by Luminosity on Feb 25, 2012 23:59:05 GMT -5
Just reading your post makes me feel angry for you! It never feels good to have your doctor tell you that things are in your head. I have been through that so many damn times that I want to scream! And I've had some pretty serious health problems that were blamed on stress and anxiety. Stupid. Here's my take on painful periods, YES we know they are a pain in the ass, YES we know our hormones fluctuate, and YES we KNOW they can hurt sometimes. But what I don't agree with is having a period completely derailing your entire life to where you can't even function. THAT IS NOT NORMAL. We all understand that there are certain levels of discomfort we have to experience. That's just an inherently quality of being female. It shouldn't be a disability though! About your cysts, are they just coming and going or do you currently have 5 cysts sitting on your ovary right now? Normally we get those functional cysts that come and go with our cycles but they're supposed to go away. Having 5 of them at one time isn't normal. Doctors seem to think that simple cysts don't cause pain. I tend to disagree with that because although most women don't feel those cysts, I think that some women CAN feel them and CAN get pain with them, especially those of us with endo. When they see these cysts on an ultrasound, they can generally classify if they are an endometrioma or not based on how they look. Endometriomas on the ultrasound look solid and "functional" cysts look fluid filled. Ultrasounds can't diagnose you with endo though so they can get a good guess at what these cysts are doing on an ultrasound but they really can't confirm it unless you have the lap. I think what you need most right now is that ONE doctor that will take you seriously. I really hope that new doctor you have is the one. Once you find that doctor that will listen, it's usually then that you start to get answers and help. It's really difficult to keep pushing for answers especially when you are treated poorly by your doctor. But always keep in mind that you know your body better than they do and if you don't feel right then keep looking for a doctor that will help you. I wish it didn't have to be like this because all doctors should take us seriously and listen. I think I just may need to start taking you with me to my PCP to let the Dr know the proper way to take care of me lol. She makes me feel like a mental case at times As for my cysts, I will tell you about the first one that I ever remember causing me issues. In 2010 I was in NJ because my mother was dying of cancer and in the hospital. While standing over her bed I felt this terrible cramping in my right kidney. I checked in to the ER and they ran a CT scan on me because they thought it sounded like I had kidney stones. They didn't find stones, but they DID find calcium build up on my right kidney and a cyst on my right ovary. The cysts are one at a time - not clusters of them THANK GOD! Drs tell they are normal and I agree, but they can never tell me why cysts affect me so much. At the moment I have a 2.2 corpus luteum cyst on my right ovary (they are always on the right side) A corpus luteum is innocent enough, generally cause no symptoms at all. Before I found out I had this cyst I was going into episodes of feeling very hot, like almost sweating and I generally lost my appetite and had this cranking pain in my ovary that went off and on. The same with the 4cm something they found on my uterus. They had NO idea what it was. The Dr. said it could have just been a backflow of blood, but it caused me so much pain that I could FEEL my uterus cramping and kind of stabbing. Again no answers as to why I am affected so much. They thought maybe bladder related and I went to see a urologist but could not afford the 700 dollar co-payment for the test, so that wasn't done. I have digestive issues too, but I just feel like theres something more going on. I started out with the AWFUL debilitating cramps and terrible leg pain since my first period at 10. By the time I was 16 I developed issues in my stomache. I smoke and am looking to quit - started at 16. So I am thinking quitting will help. I guess I just started because it was a way to deal with stuff, inclusing my pain. It does contribute to my tummy issues, but I think the period issues or something totally different. I want to quit but its so hard when the PMDD kicks in
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Post by Luminosity on Feb 26, 2012 0:34:20 GMT -5
Here's a post on cysts: endo-resolved.proboards.com/index.cgi?board=related&action=display&thread=2150 Might be worth a read! Though I'm not an expert on cysts, there are a few common things we see about cysts around here. Some women with endo do, in fact, have endometriomas on their ovaries. Not everyone with endo has them, though. Often, a doctor can make an educated guess if the ultrasound does show endometriomas, but only a lap can confirm that. Have you heard of PCOS? Several women that have endo also have PCOS, and some women with PCOS have issues with cysts (though not all do). It may be another thing to consider. However, with your history of pelvic and rectal pain, I'd suspect endo would be the main culprit. And as for your doctors not taking you seriously, man, that just infuriates me. The thing that really ticks me off is that if a man were to go to the ER with severe pains like that, they'd be treated immediately. If a woman goes in for that type of pain, they are told it's in their heads. Men don't have the hormonal fluctuations that women do, so they don't have the same types of problems they do. But medical professions for some reason take men so much more seriously than women. It's sickening to think about. I wonder where this stereotype starts - medical school? Society? Drug companies? Whatever the case, there's an entire industry out there that's making a ton of money by not treating women properly the first time and getting to the root of issues. Although I think it's a difficult stereotype to overcome, I hope women like us keep yelling and screaming and changing the minds of these doctors, one at a time. Trust your gut and keep pushing for help! Although I would never wish endo on anyone, I'd love to see the looks on the faces of the doctors that didn't believe if you do, in fact, have endo. I hope you get some answers soon, and even if you're not seeing any of those awful medical professionals anymore, I hope you'd consider sharing your results (when you get them) with them, just so they understand how badly they dropped the ball with your care. Although you may not get all the answers or help you need all at once - few of us do - help is on the way. And so is relief. Hang in there! It's NOT in your head! I mean, I know women are smart and talented, but I have yet to meet a woman that a) WANTS the type of pain you're having and b) can somehow make their bodies feel it. I have no idea why any MEDICAL professional would even think that way, especially since they're so trained in biology. Ok, I'm getting off my soapbox now... Thank you for the link! I will def check it out. I have heard of PCOS, but I thought the cysts had to be clustered on an ovary? I do however end up with a cyst that causes me grief about every 2 months it seems lol. I hope they find at least SOMETHING during my lap. Any thing that can explain my terrible pain and PMDD. Do many women with endo also have PMDD? I am terrified they won't find a thing wrong in there and that I will just look like I was a waste of their time And I hear ya about the men getting better treatment. I have even seen it, heard of it. You want to know the funny thing though? My PCP is a woman! I don't get how a WOMAN can tell another woman that her pain is basically in her head. She and I share the same reproductive system!!! Perhaps she is the way she is because her periods were never like mine are? I can understand that, but what I don't get is why a woman would telll another woman that nothing is wrong when women obviously know their bodies. Women need to care for one another, stand beside eachother, speak up when the other cannot! I am so glad to be here! FINALLY! WOMEN WHO GET ME!!!!
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Post by Luminosity on Feb 26, 2012 3:43:31 GMT -5
You know I was ust thinking. I have damage to my lumbosacral spine. I have always have severe pain in my low back and sciatic nerve while on my period. I was in a bad car accident but I am starting to wonder if that nerve damage was there before the accident. he accident made that worse obviously, but could endo go as far as to damage a nerve? I only ask because I cannot remember the first time I started having rectal pain. Seems like its been there for so long. I am not even sure if the damage in my lumbosacral spine would even cause rectal pain only when I am on my period? I have some discomfort now and then but my period is what makes it go absolutely haywire and basically disables me.
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Post by JC on Feb 26, 2012 10:19:53 GMT -5
Good grief! What HASN'T happened to you?? You poor thing! Did you know that you can get endo on your sciatic nerve? Actually, you can get endo just about everywhere. As far as your PCP, I think when women have easy periods it's hard for them to understand what it's like for other women to go through hell. I think they all assume we go through the same thing which is SOOOOOOOOOOO UNTRUE! I really hope you get that lap. I think that's the next best thing for you. If you are having trouble getting your PCP to stop treating you like a head case maybe you can tell her, "Look, I know I have a psych history but could you please try to rule out a medical cause to all of my problems before we make the decision that I have a psychiatric disorder? My symptoms all started when I went through puberty and I really feel like the cause to my problems is physical, not mental." There are so many physical abnormalities that can cause depression and anxiety. Have you had your thyroid checked? Hormone levels checked? Vitamin deficiencies? All of those can cause anxiety and depression. About your rectal pain, I know all too well how that feels. That was one of my symptoms when my endo was bad. It literally feels like someone is jamming a knife up there and you can't exactly scream out in pain because what the heck are you supposed to say? AHH my ass hurts! LOL. But seriously though, it's extremely painful and just like you, mine only happened when I was on my period. I had endo in the area between the uterus and the rectum called the posterior cul de sac or sometimes referred to as the pouch of douglas. I'd like to know who douglas is so I can give him a piece of my mind! Anyways, don't give up. You've been through enough and it's time you get some answers. I think you're finally headed in the right direction by seeing an OBgyn and getting a lap done.
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Post by Karen on Feb 26, 2012 10:32:45 GMT -5
If you are having trouble getting your PCP to stop treating you like a head case maybe you can tell her, "Look, I know I have a psych history but could you please try to rule out a medical cause to all of my problems before we make the decision that I have a psychiatric disorder? My symptoms all started when I went through puberty and I really feel like the cause to my problems is physical, not mental." There are so many physical abnormalities that can cause depression and anxiety. Have you had your thyroid checked? Hormone levels checked? Vitamin deficiencies? All of those can cause anxiety and depression. I 100% agree - well said! I know I spent most of my life going to doctors, telling them my symptoms, and then expecting they'd tell me what to do or what it was. I've since learned that sometimes, you need to be direct and steer them in the right direction. And as for hormone levels, thyroid levels, vitamin deficiencies - if you haven't had blood work for those, then please demand it! All those things can have a HUGE impact on how well you function both physically and emotionally! I have issues with both hormone and thyroid levels and go from feeling absolutely awful or completely stressed to very calm and happy, depending on how my treatment is going. I'm not saying that's what's going on with you at all, but it's at least something to look into if you haven't already.
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Post by Luminosity on Feb 26, 2012 10:48:29 GMT -5
Good grief! What HASN'T happened to you?? You poor thing! Did you know that you can get endo on your sciatic nerve? Actually, you can get endo just about everywhere. As far as your PCP, I think when women have easy periods it's hard for them to understand what it's like for other women to go through hell. I think they all assume we go through the same thing which is SOOOOOOOOOOO UNTRUE! I really hope you get that lap. I think that's the next best thing for you. If you are having trouble getting your PCP to stop treating you like a head case maybe you can tell her, "Look, I know I have a psych history but could you please try to rule out a medical cause to all of my problems before we make the decision that I have a psychiatric disorder? My symptoms all started when I went through puberty and I really feel like the cause to my problems is physical, not mental." There are so many physical abnormalities that can cause depression and anxiety. Have you had your thyroid checked? Hormone levels checked? Vitamin deficiencies? All of those can cause anxiety and depression. About your rectal pain, I know all too well how that feels. That was one of my symptoms when my endo was bad. It literally feels like someone is jamming a knife up there and you can't exactly scream out in pain because what the heck are you supposed to say? AHH my ass hurts! LOL. But seriously though, it's extremely painful and just like you, mine only happened when I was on my period. I had endo in the area between the uterus and the rectum called the posterior cul de sac or sometimes referred to as the pouch of douglas. I'd like to know who douglas is so I can give him a piece of my mind! Anyways, don't give up. You've been through enough and it's time you get some answers. I think you're finally headed in the right direction by seeing an OBgyn and getting a lap done. At 16 I started feeling very dizzy and very nauseous. My mom took me to the ER and they checked my metabolic panel and I had a calcium difficiency. I recently had one done and it was okay. But I am wondering whats going on since I have had "gravel" and calcium found on my right kidney. Want to know something hilarious? The ER Dr just told me to eat more bananas when I found out about that calcium difficiency hahahaha. And I believe that the pouch of douglas is where my Gyno thinks I may have endo. I want to know who douglas is too LOL. As for my PCP, well quite honestly I think one of these days I will tell her like it is. It may be different now with her because I have another Dr on MY side this time. If its discovered that I DO indeed have endo then I am definitely giving her a few books on the subject. And a big big smile!!!! And, if I am feeling feisty enough, A REALLY BIG "I TOLD YOU SO!!!" I am wayyyy more into killin' em with kindness though
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Post by Luminosity on Feb 26, 2012 10:52:41 GMT -5
@ Karen yes I have had my thyroid checked and thats normal. My PCP just says everything is either due to my anorexia, anxiety, or acid LOL. Oh! AND that I make it worse by thinking something is wrong. Well, apparently something IS wrong. She should have realized that when I told her the reasons for my anorexia - to avoid physical pain and to combat the emotional anguish because of it.
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Post by Karen on Feb 26, 2012 10:56:03 GMT -5
Humor me - what thyroid test did she do? Most just test TSH levels, but those can be misleading. Unless she also checked free T3 and free T4 levels, she can't say with certainty that you don't have thyroid issues. Again, I'm not implying that you do, but may be one extra set of tests to request just to rule it out.
Have you had further testing on your kidney?
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Post by Luminosity on Feb 26, 2012 11:10:00 GMT -5
I don't know if it was the T3 and T4 as well. IThey did it at one of my many ER visits As for the kidneys. They did CT scans and urine tests (again at one of my famous ER visits). They don't know how they calcium deposits ended up on my kidney. And it was only on one kidney. Wonder why it just happened to one
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