4/24/13. I’m back. And oy. What a mess of troubled water I continue to have to wade through… But first, Carolyn, I hope the last few weeks have seen you healing well and I hope you’re happy you had this over-rated and under-explained procedure. Me – well - not so much.
While a couple of weeks ago, the amount of spotting did indeed lessen – it’s come back since.
And - the saga of misinformation and falsities continues.
Today, at 105 days (15 weeks) post-op, I had another ultrasound. Hot-shot had originally scheduled it to be done under his watch, but after I called my regular gyn doc’s office to make sure they were aware of these ongoing complications, they called me back a week later and said regular gyn doc wanted to do the follow-up herself. I thought – well thank god! She’s taking some responsibility for me (10 years her patient, by the way – and yes, she delivered one of two my babies - via C-section). So today was the day.
The ultrasound tech apparently had not been briefed that the reason I was having this second ultrasound done was because of ongoing bleeding after a fibroid removal and ablation. I had to tell him that. He seemed surprised I’d had an ablation at all while he was looking at the images on screen. “You still have plenty of fundal endometrium – in fact, it’s 9mm thick!” (which I guess is Thick with a capital “T”– especially for an endometrium that’s not even supposed to EXIST anymore!) Yep. Therein lies the biggest of the problems. The ablation only destroyed about half of my endometrium (the lower half). The “balloon” ablation – or gee, was it the Novasure? - didn’t even touch the top part of my uterus.
Hot-shot f**ked up.
And the part that made me feel sickest today? I showed doc that photo hot-shot gave me of my uterus before and after. She saw what I saw right out of the gate. That “after” picture – when you look beyond the destroyed white, chawed-up surface of my once pink and mostly happy uterus - there’s a whole sh*tload of red flesh at the top of that photo. That’s the top of my uterus. Yeah. The ablation didn’t touch it. Even I saw that the first time I looked at the photo with hot-shot. And he had the gall to point to that picture and say, “See how clean that is? All that endometrium nicely removed there…” He was lying through his teeth. It wasn’t removed. Anybody could see that.
And as far as the official word on which ablation method he used – I got the surgical report and yes indeed, he refers to what he did as a “Novasure balloon”. Three times! My doc confirmed – there is no Novasure balloon. It’s one or the other. I asked – “So what do you make of his confusion there?” She shrugged and didn’t say much. So I then challenged her with the question – “How many ablations has hot-shot actually performed?” Her response: “I have no idea.” Mine: “Then why send me to him?” Doc: “I didn’t send you to him for an ablation. I sent you to him for a fibroid removal.”
Sigh.
So my doc’s plan is to wait another 3 months to see if the spotting/in-between bleeding stops. As of today’s ultrasound images, we now know that I will continue to have periods. If the past three periods are any indication of what’s to come period-wise, at least I will bleed less.
Then, if I haven’t stopped with the in-between bleeding and spotting, she wants to go in there and repeat the ablation using Her Option in her office. I didn’t tell her this today - because I’m hoping I won’t have to, I’m hoping I will heal on my own between now and then – but, there’s no way in hell I’m letting her or hot-shot anywhere near the inside of my uterus again. If a repeat ablation becomes necessary (I refuse to deal with daily bleeding and spotting for the next 4 years until menopause), it sure as sh*t won’t be one of them who does it.
And I don’t want to let them just walk from this debacle, either. A shrug is not an answer.
Which is why I now have contact info for a medical malpractice lawyer given to me by a dear lawyer friend and will begin the unfortunate process of finding out what kind of legal leg I have to stand on in this case. My lawyer friend feels, after everything I’ve told her, that I most definitely have a case. Honestly, the hardest part will be figuring out where to begin. This story has legs of its own.
I only wish I had hot-shot on tape with his priceless “paternal approach” comment. That would seal the deal. My goal here is to give a wake-up call to a couple of doctors who’ve apparently forgotten about patient CHOICE. Whether I can swing it or not, I don’t know. But I can’t stomach just turning the other cheek and letting bygones be bygones. It’s my body. It was my uterus. I was sent into this uninformed and honestly, unnecessarily. And after 15 weeks of bleeding and spotting and never knowing when or where a gush is going to happen, I can adamantly say I would never, ever do this again. I’d take my 3 days of heavy bleeding a month over this any day!
Women need to be informed about this procedure so they can make a wise choice – of their own.
Sarah
While a couple of weeks ago, the amount of spotting did indeed lessen – it’s come back since.
And - the saga of misinformation and falsities continues.
Today, at 105 days (15 weeks) post-op, I had another ultrasound. Hot-shot had originally scheduled it to be done under his watch, but after I called my regular gyn doc’s office to make sure they were aware of these ongoing complications, they called me back a week later and said regular gyn doc wanted to do the follow-up herself. I thought – well thank god! She’s taking some responsibility for me (10 years her patient, by the way – and yes, she delivered one of two my babies - via C-section). So today was the day.
The ultrasound tech apparently had not been briefed that the reason I was having this second ultrasound done was because of ongoing bleeding after a fibroid removal and ablation. I had to tell him that. He seemed surprised I’d had an ablation at all while he was looking at the images on screen. “You still have plenty of fundal endometrium – in fact, it’s 9mm thick!” (which I guess is Thick with a capital “T”– especially for an endometrium that’s not even supposed to EXIST anymore!) Yep. Therein lies the biggest of the problems. The ablation only destroyed about half of my endometrium (the lower half). The “balloon” ablation – or gee, was it the Novasure? - didn’t even touch the top part of my uterus.
Hot-shot f**ked up.
And the part that made me feel sickest today? I showed doc that photo hot-shot gave me of my uterus before and after. She saw what I saw right out of the gate. That “after” picture – when you look beyond the destroyed white, chawed-up surface of my once pink and mostly happy uterus - there’s a whole sh*tload of red flesh at the top of that photo. That’s the top of my uterus. Yeah. The ablation didn’t touch it. Even I saw that the first time I looked at the photo with hot-shot. And he had the gall to point to that picture and say, “See how clean that is? All that endometrium nicely removed there…” He was lying through his teeth. It wasn’t removed. Anybody could see that.
And as far as the official word on which ablation method he used – I got the surgical report and yes indeed, he refers to what he did as a “Novasure balloon”. Three times! My doc confirmed – there is no Novasure balloon. It’s one or the other. I asked – “So what do you make of his confusion there?” She shrugged and didn’t say much. So I then challenged her with the question – “How many ablations has hot-shot actually performed?” Her response: “I have no idea.” Mine: “Then why send me to him?” Doc: “I didn’t send you to him for an ablation. I sent you to him for a fibroid removal.”
Sigh.
So my doc’s plan is to wait another 3 months to see if the spotting/in-between bleeding stops. As of today’s ultrasound images, we now know that I will continue to have periods. If the past three periods are any indication of what’s to come period-wise, at least I will bleed less.
Then, if I haven’t stopped with the in-between bleeding and spotting, she wants to go in there and repeat the ablation using Her Option in her office. I didn’t tell her this today - because I’m hoping I won’t have to, I’m hoping I will heal on my own between now and then – but, there’s no way in hell I’m letting her or hot-shot anywhere near the inside of my uterus again. If a repeat ablation becomes necessary (I refuse to deal with daily bleeding and spotting for the next 4 years until menopause), it sure as sh*t won’t be one of them who does it.
And I don’t want to let them just walk from this debacle, either. A shrug is not an answer.
Which is why I now have contact info for a medical malpractice lawyer given to me by a dear lawyer friend and will begin the unfortunate process of finding out what kind of legal leg I have to stand on in this case. My lawyer friend feels, after everything I’ve told her, that I most definitely have a case. Honestly, the hardest part will be figuring out where to begin. This story has legs of its own.
I only wish I had hot-shot on tape with his priceless “paternal approach” comment. That would seal the deal. My goal here is to give a wake-up call to a couple of doctors who’ve apparently forgotten about patient CHOICE. Whether I can swing it or not, I don’t know. But I can’t stomach just turning the other cheek and letting bygones be bygones. It’s my body. It was my uterus. I was sent into this uninformed and honestly, unnecessarily. And after 15 weeks of bleeding and spotting and never knowing when or where a gush is going to happen, I can adamantly say I would never, ever do this again. I’d take my 3 days of heavy bleeding a month over this any day!
Women need to be informed about this procedure so they can make a wise choice – of their own.
Sarah
Oh, Sarah, I read your response and my heart just dropped. I am not even sure I can find the words to express all the emotions I have. As the recipient of an unnecessary cesarean, I completely understand doctors taking matters in their own “parental” (oh, how that makes me ill) hands. The anger, hurt, frustration, depression - my gosh - your experience brings back so much that I have mentally veiled.
The shrugged shoulders and dear-eyed expression by your physician is not acceptable. I am sure you started a journal of this “adventure,” and it will serve you well in a lawsuit. I cannot find the words to elucidate my sorrow that you have been put in this situation. I would like to say I am dumbfounded, but I am not.
Here is my mental verbiage and what trotted through my head when my doctor gently walked my 3-pound, gray-mattered noggin toward signing a consent for ablation surgery: This is an insurance scam. Yup, that is exactly what my rational mind was screaming, if you can consider a brain, feed by a body with a 5.2 hemoglobin, lucid.
Before I went to see a doctor, I did some research about ablation, and at first I decided it would be the only way I would go; however, after Internet investigation of individual experiences, my thoughts turned critical of the procedure. It suddenly seemed to me that too many ablations were being done and many, in my inference anyway, were being performed unwarranted. I deduced that this was a seemingly simple procedure with no certain outcome. So, it if worked, great; if not, well, the doctor told you it may not. Anything in life that gives an individual a guaranteed acquittal is probably a scam. The medical field is riddled with this type of behavior, and many patients are preyed upon out of fear and desperation, left with unclear expectations, and no one to place blame upon except themselves - or at least that is what the medical community wants you to believe. Our health care system is a Peter Rabbit catch-me-if-you-can institution and somebody’s gonna lose their little blue jacket. It is YOU against THEM. That’s my opinion anyway.
Now, I am not stupid, and I realize that medical outcomes are rarely “textbook,” but this procedure has such varied results, that almost any consequence, good or bad, would be hard for a patient to prove a doctor of wrong doing or misdiagnosis, and I surmise they quite often use that edge to better their financial portfolio. Call me cynical; I’m okay with that.
I know you are at the point that you are asking yourself why I went through with the procedure after having such negative reactions. Well, I wrestled with those do it/don’t do it sprites on my shoulders for a few weeks, and I simply succumbed to the pitch-forked, pro-ablation devil, perhaps out of sheer desperation and exhaustion, both real and imagined, brought about by the constant torrent bleeding I had steadily come to know as life for a middle-aged woman. I knew I didn’t want the invasive hysterectomy, and I knew I needed to stop the bleeding ASAP. I was in a completely different situation than most of my comrades who also heeded the prodding of that just do it imp who had taken up residence on my shoulder; I had reached the point of undeniable physical weakness. I was ready to cash in my chips. Never having a life of spun sugar and kittens, I was very much ready for suicide. Seems strange to put that in black and white (and publicly no less) but the simple truth is, I was quickly running through my will-to-live genes. I sat in my doctor’s office with depression so heavy it was as if I was already feeling the dank darkness lick at my body, and I welcomed it. I just wanted peace. I was ready. I nodded my head in agreement simply because I just didn’t give a damn anymore. It had been years that I struggled with a reason to live and now I was uniting that mood with very little sleep, severe anemia, and revolving-door trips to the bathroom that left me feeling great sympathy for those under house arrest. Dramatic as it sounds, I was so over waking up in the morning.
You asked me in a previous post what I did for a living. Would it surprise you to know that since high school I had done insurance billing? My career started in my late-teen years billing pharmaceuticals and hyperalimentation products for cancer patients; from there I worked in a surgical supply store billing DME, and then took a job running a medical office for a prominent cardiovascular surgeon only to leave there shortly after my oldest son was born and join my husband in our business. I returned to work for a little while, after the kids were out of elementary school, billing for mental health services. After years of witnessing the palpable corruption of billing, and yet having no choice other than do what I was told by the very person who signed that weekly, much-depended-on bank note, I had to get out. I watched insurance billing deteriorate each time I put a pen to paper, and I just couldn’t live with myself anymore.
I enrolled back in school - court reporting - mainly because I needed something quick that would provide me a self-sustaining living as my husband and I were quickly riding on the undertow of our marriage to divorce court. I didn’t want alimony or child support; I just wanted to be free. And BAM, after very private and very public struggles, (on top of everything else, I stood alone and fought a gun law in the town I have relocated to - but that is a whole ‘nother story) I was slowly getting sicker and sicker.
So, fifty five days post surgery, I can reservedly say, I am okay. Of course given my propensity for serving as the all-encompassing Negative Nancy rolled into Doubting Thomas, I wait for the proverbial other shoe. My doctor had escorted me into ablation with nothing short of eyes wide open. He did explain that there was a possibility that my period could forever disappear, return with a more reasonable and normal amount of blood loss, or return to the deluge it was. I have only stopped leaking, bleeding, and dripping on April 18. I believe I had somewhat of a period from April 14 to the 18. I panicked on the 14th seeing blood again - I had been experiencing a watery, Winnie-the-Pooh colored discharge for several weeks before that - the sight of vivid red blood was unwelcome indeed, but after a relatively light (probably normal) period, lasting only three days, everything stopped. Everything. I still wear a daily liner because of my own ambiguity of the procedure and more than likely those little absorbent, frilly-edged pads have become somewhat of a security blanket.
I have not posted here in a while because while wrapping up lower body issues, my upper body decided to rebel in jealousy. A mammogram taken on the 27th of March showed a rather large mass. The doctor’s office called and scheduled me for a digital mammogram to be followed by a sonogram, if warranted. The sweet little nurse on the other end of the phone compassionately told me this was URGENT and that she had already taken the liberty and scheduled me for an appointment at the hospital the very next morning. Yeah, right, like I was jumping on that bandwagon. I gritted my teeth and as far away from disdain as I could portray, I merely explained that I needed to think about further testing, and that she had zero jurisdiction over my calendar or my money. Harrumph. In the end I did go - mostly because my husband would not leave me alone about it - and he deserved the peace of mind to know that I was okay. I knew in my heart that I was - and that this (here we go, back on the carousel) was yet another elaborately planned scheme of the medical profession to suckle more from an ever-giving, well-nourished insurance company. Oh, I know that sounds like I am hating on those with a higher education than I have, but given my experiences, it is hard to sway me otherwise. I knew just driving to the hospital that the sonogram was going to be performed - no matter how clear the digital mammogram result. It was already ordered, and best yet, paid for 100% by my insurance company. There we go again, my distrust on my sleeve. What happened to the mass initially found, you ask? Ahhhh. After two hours in the hospital the mysterious mass was not found - at all. This only adds proof of insurance swindling to my side of the scale, even if in my mind alone.
Now, I won’t admit that this entire experience was cloaked in mistrust and trickery. I am certain that the medical profession did save my life, so please, folks, save your hate mail. The transfusion was undeniably needed, and maybe even the D&C, hysteroscopy, and I’ll even go as far as saying the ablation (with some reservation, understandably) was positive. The treatment I received was chock-full of sincere empathy by all those involved. The nurses were especially wonderful - aren’t they always? The hospital was nothing short of extraordinary - I even received a get well card signed by the entire medical team. Nice touch and very much appreciated - my obvious love for words runs deep. And aside from all of the physical benefits I have been able to reap from this encounter; it has put my husband and me on a different path. I guess we both came to the abrupt understanding that life could very well be too short to let miniscule problems divide to two high school sweethearts who have given life to two amazing and loving sons, and who have a whole lot of living left to do - together.
I guess by the grace of God (or whomever you choose to credit) I’ll be enjoying that little red convertible for a few more years.
For you, Sarah, I would most certainly advise you to seek restitution with legal resources. If for no other reason than to bring light and clarity to a very questionable (and in my opinion, scarily frequent) medical treatment. The very first question I would love to have resolved is the miscommunication (?) between your regular doctor and hot-shot. Whatever made hot-shot draw the conclusion that you needed/wanted uterine ablation? Apparently it was NEVER ordered by your regular gyn - she admitted that. Do you mean to tell me that your gynecologist referred you to this gentleman and never received a post-op report? Or read it? Really? Did she receive a report of the fibroid removal with the ablation conveniently not mentioned? I don’t know what kind of education or certification one has to undergo to have the ability to perform ablation, but you can surely bet I would be researching that and then find out if hot-shot met the criteria. I said early on that there was no such thing as Novasure “balloon” ablation. Thermachoice (which I had) is the balloon procedure filled with heated, sterile fluid. Novasure does not use a balloon at all - not even close!
Another procedure? Well, I suggest you take that a day at a time. I am not sure what choice you have, but I agree with you, I would hold off as long as I was able - and most definitely would not let either physician make my decision or perform the surgery.
Let’s try to stay in touch - even if our correspondence is weeks apart. Perhaps it is presumptuous for me to say, but I think we have a good amount of information and experience that may just help another woman struggling with the ablation decision, and if we help just one other individual, then we succeeded as people.
One last related/unrelated tidbit - you may wonder why I never blew the whistle on what I was privy to regarding fraudulent medical billing. The medical industry is protected by HIPPA, of which I am sure you are aware - you cannot, when you are not the patient, bring fraudulent concerns into legal scrutiny without jeopardizing the patient’s privacy and break the law putting yourself in possible peril. It is hard to get patients to come forward for several reasons, the biggest being the mindset that they didn’t have to pay for the overages, so who cares, that’s what insurance is for. At the same time you cannot prove your case without those very same people willing to come forward. The medical profession tangles a very difficult web, teetering on protecting privacy and making real deception known, allowing and even encouraging parasitic behavior. It makes going to bat for what is righteous impossible unless you yourself are willing for a long, expensive legal battle. It is a catch-22 and is very self-governing - and that is how much of it continues to spiral out of control costing this country millions each day.
Which explains my misuse of the word “evasive” in a previous post - I guess it was a Freudian slip - I really do believe that the medical field is a slimy, shifty business.
Thinking of you. Carolyn
The shrugged shoulders and dear-eyed expression by your physician is not acceptable. I am sure you started a journal of this “adventure,” and it will serve you well in a lawsuit. I cannot find the words to elucidate my sorrow that you have been put in this situation. I would like to say I am dumbfounded, but I am not.
Here is my mental verbiage and what trotted through my head when my doctor gently walked my 3-pound, gray-mattered noggin toward signing a consent for ablation surgery: This is an insurance scam. Yup, that is exactly what my rational mind was screaming, if you can consider a brain, feed by a body with a 5.2 hemoglobin, lucid.
Before I went to see a doctor, I did some research about ablation, and at first I decided it would be the only way I would go; however, after Internet investigation of individual experiences, my thoughts turned critical of the procedure. It suddenly seemed to me that too many ablations were being done and many, in my inference anyway, were being performed unwarranted. I deduced that this was a seemingly simple procedure with no certain outcome. So, it if worked, great; if not, well, the doctor told you it may not. Anything in life that gives an individual a guaranteed acquittal is probably a scam. The medical field is riddled with this type of behavior, and many patients are preyed upon out of fear and desperation, left with unclear expectations, and no one to place blame upon except themselves - or at least that is what the medical community wants you to believe. Our health care system is a Peter Rabbit catch-me-if-you-can institution and somebody’s gonna lose their little blue jacket. It is YOU against THEM. That’s my opinion anyway.
Now, I am not stupid, and I realize that medical outcomes are rarely “textbook,” but this procedure has such varied results, that almost any consequence, good or bad, would be hard for a patient to prove a doctor of wrong doing or misdiagnosis, and I surmise they quite often use that edge to better their financial portfolio. Call me cynical; I’m okay with that.
I know you are at the point that you are asking yourself why I went through with the procedure after having such negative reactions. Well, I wrestled with those do it/don’t do it sprites on my shoulders for a few weeks, and I simply succumbed to the pitch-forked, pro-ablation devil, perhaps out of sheer desperation and exhaustion, both real and imagined, brought about by the constant torrent bleeding I had steadily come to know as life for a middle-aged woman. I knew I didn’t want the invasive hysterectomy, and I knew I needed to stop the bleeding ASAP. I was in a completely different situation than most of my comrades who also heeded the prodding of that just do it imp who had taken up residence on my shoulder; I had reached the point of undeniable physical weakness. I was ready to cash in my chips. Never having a life of spun sugar and kittens, I was very much ready for suicide. Seems strange to put that in black and white (and publicly no less) but the simple truth is, I was quickly running through my will-to-live genes. I sat in my doctor’s office with depression so heavy it was as if I was already feeling the dank darkness lick at my body, and I welcomed it. I just wanted peace. I was ready. I nodded my head in agreement simply because I just didn’t give a damn anymore. It had been years that I struggled with a reason to live and now I was uniting that mood with very little sleep, severe anemia, and revolving-door trips to the bathroom that left me feeling great sympathy for those under house arrest. Dramatic as it sounds, I was so over waking up in the morning.
You asked me in a previous post what I did for a living. Would it surprise you to know that since high school I had done insurance billing? My career started in my late-teen years billing pharmaceuticals and hyperalimentation products for cancer patients; from there I worked in a surgical supply store billing DME, and then took a job running a medical office for a prominent cardiovascular surgeon only to leave there shortly after my oldest son was born and join my husband in our business. I returned to work for a little while, after the kids were out of elementary school, billing for mental health services. After years of witnessing the palpable corruption of billing, and yet having no choice other than do what I was told by the very person who signed that weekly, much-depended-on bank note, I had to get out. I watched insurance billing deteriorate each time I put a pen to paper, and I just couldn’t live with myself anymore.
I enrolled back in school - court reporting - mainly because I needed something quick that would provide me a self-sustaining living as my husband and I were quickly riding on the undertow of our marriage to divorce court. I didn’t want alimony or child support; I just wanted to be free. And BAM, after very private and very public struggles, (on top of everything else, I stood alone and fought a gun law in the town I have relocated to - but that is a whole ‘nother story) I was slowly getting sicker and sicker.
So, fifty five days post surgery, I can reservedly say, I am okay. Of course given my propensity for serving as the all-encompassing Negative Nancy rolled into Doubting Thomas, I wait for the proverbial other shoe. My doctor had escorted me into ablation with nothing short of eyes wide open. He did explain that there was a possibility that my period could forever disappear, return with a more reasonable and normal amount of blood loss, or return to the deluge it was. I have only stopped leaking, bleeding, and dripping on April 18. I believe I had somewhat of a period from April 14 to the 18. I panicked on the 14th seeing blood again - I had been experiencing a watery, Winnie-the-Pooh colored discharge for several weeks before that - the sight of vivid red blood was unwelcome indeed, but after a relatively light (probably normal) period, lasting only three days, everything stopped. Everything. I still wear a daily liner because of my own ambiguity of the procedure and more than likely those little absorbent, frilly-edged pads have become somewhat of a security blanket.
I have not posted here in a while because while wrapping up lower body issues, my upper body decided to rebel in jealousy. A mammogram taken on the 27th of March showed a rather large mass. The doctor’s office called and scheduled me for a digital mammogram to be followed by a sonogram, if warranted. The sweet little nurse on the other end of the phone compassionately told me this was URGENT and that she had already taken the liberty and scheduled me for an appointment at the hospital the very next morning. Yeah, right, like I was jumping on that bandwagon. I gritted my teeth and as far away from disdain as I could portray, I merely explained that I needed to think about further testing, and that she had zero jurisdiction over my calendar or my money. Harrumph. In the end I did go - mostly because my husband would not leave me alone about it - and he deserved the peace of mind to know that I was okay. I knew in my heart that I was - and that this (here we go, back on the carousel) was yet another elaborately planned scheme of the medical profession to suckle more from an ever-giving, well-nourished insurance company. Oh, I know that sounds like I am hating on those with a higher education than I have, but given my experiences, it is hard to sway me otherwise. I knew just driving to the hospital that the sonogram was going to be performed - no matter how clear the digital mammogram result. It was already ordered, and best yet, paid for 100% by my insurance company. There we go again, my distrust on my sleeve. What happened to the mass initially found, you ask? Ahhhh. After two hours in the hospital the mysterious mass was not found - at all. This only adds proof of insurance swindling to my side of the scale, even if in my mind alone.
Now, I won’t admit that this entire experience was cloaked in mistrust and trickery. I am certain that the medical profession did save my life, so please, folks, save your hate mail. The transfusion was undeniably needed, and maybe even the D&C, hysteroscopy, and I’ll even go as far as saying the ablation (with some reservation, understandably) was positive. The treatment I received was chock-full of sincere empathy by all those involved. The nurses were especially wonderful - aren’t they always? The hospital was nothing short of extraordinary - I even received a get well card signed by the entire medical team. Nice touch and very much appreciated - my obvious love for words runs deep. And aside from all of the physical benefits I have been able to reap from this encounter; it has put my husband and me on a different path. I guess we both came to the abrupt understanding that life could very well be too short to let miniscule problems divide to two high school sweethearts who have given life to two amazing and loving sons, and who have a whole lot of living left to do - together.
I guess by the grace of God (or whomever you choose to credit) I’ll be enjoying that little red convertible for a few more years.
For you, Sarah, I would most certainly advise you to seek restitution with legal resources. If for no other reason than to bring light and clarity to a very questionable (and in my opinion, scarily frequent) medical treatment. The very first question I would love to have resolved is the miscommunication (?) between your regular doctor and hot-shot. Whatever made hot-shot draw the conclusion that you needed/wanted uterine ablation? Apparently it was NEVER ordered by your regular gyn - she admitted that. Do you mean to tell me that your gynecologist referred you to this gentleman and never received a post-op report? Or read it? Really? Did she receive a report of the fibroid removal with the ablation conveniently not mentioned? I don’t know what kind of education or certification one has to undergo to have the ability to perform ablation, but you can surely bet I would be researching that and then find out if hot-shot met the criteria. I said early on that there was no such thing as Novasure “balloon” ablation. Thermachoice (which I had) is the balloon procedure filled with heated, sterile fluid. Novasure does not use a balloon at all - not even close!
Another procedure? Well, I suggest you take that a day at a time. I am not sure what choice you have, but I agree with you, I would hold off as long as I was able - and most definitely would not let either physician make my decision or perform the surgery.
Let’s try to stay in touch - even if our correspondence is weeks apart. Perhaps it is presumptuous for me to say, but I think we have a good amount of information and experience that may just help another woman struggling with the ablation decision, and if we help just one other individual, then we succeeded as people.
One last related/unrelated tidbit - you may wonder why I never blew the whistle on what I was privy to regarding fraudulent medical billing. The medical industry is protected by HIPPA, of which I am sure you are aware - you cannot, when you are not the patient, bring fraudulent concerns into legal scrutiny without jeopardizing the patient’s privacy and break the law putting yourself in possible peril. It is hard to get patients to come forward for several reasons, the biggest being the mindset that they didn’t have to pay for the overages, so who cares, that’s what insurance is for. At the same time you cannot prove your case without those very same people willing to come forward. The medical profession tangles a very difficult web, teetering on protecting privacy and making real deception known, allowing and even encouraging parasitic behavior. It makes going to bat for what is righteous impossible unless you yourself are willing for a long, expensive legal battle. It is a catch-22 and is very self-governing - and that is how much of it continues to spiral out of control costing this country millions each day.
Which explains my misuse of the word “evasive” in a previous post - I guess it was a Freudian slip - I really do believe that the medical field is a slimy, shifty business.
Thinking of you. Carolyn
Oh my! I am going through the same thing! I am on my fifth week of bleeding, spotting, and surprise gushes! I have been vomiting off and on for the same amount of time, also very tired and weak.
My story began in April of this year when my Obgyn told me because my periods were so heavy for a full seven days that I needed to try the depo-provera shot before any kind of surgery, because that is what all insurance companies recommend. (1st lie). My husband was a bit concerned about this, but I listened to the doctor (1st mistake). I then had a rare side effect, and developed this horrible rash. I called the Obgyn and they told me they were 100% positive I had herpes! I wanted to die at this point! They did tests and bloodwork, and they were wrong! Now I am so ticked off at this doctor I am seeing red! I have a follow up with the doctor june 18th, but have to cancel because I have been bleeding for about ten days, and the bleeding is ten times worse than my period. I finally get an appointment with my doctor to discuss why I am bleeding so badly, and that the depo-provera shot is not working Nd I am having all if these side effects. Well my doctor was not there when I got there, but her nurse told me that it is normal. (2nd lie). I had her call my doctor to tell her that I was concerned and did not want the second shot, but they assured me that within three days the bleeding would stop (3rd lie). It got worse than before! The next day I went to see my family physician, and she took my blood pressure and heart rate. Blood pressure was low and heart rate was high. She sent me for bloodwork immediately. I had anemia! That was in Friday, by Sunday afternoon I could barely walk and was having trouble breathing, so my family physician told my husband to get me to the hospital immediately. We were at the hospital for eight hours when the Obgyn from the office I went to gave me some fancy pills to slow down the bleeding and had me discharged. The bleeding never slowed! My husband brought me to their office the following day, and had to hold me up while we went in. The doctor informed my husband that my hemoglobins had dropped so low that I needed to be admitted. At that point I was unconscious, and they had to call an ambulance to come transport me. I was brought in and given fluids and medications through IV. They brought me into my room in the nuclear science wing, at approximately 4:30 am in July 2nd the found me in a critical state and I was non responsive. I was dying, and they needed to do a blood transfusion immediately or I was going to die. They loaded me with all those fancy meds to slow down the bleeding once again and continued bloodwork every couple of hours to see if my hemoglobins would get up to an 8. They could not perform a hysterectomy as I would lose more blood and die, so they did the uterine ablation when my hemoglobins were only at a 7.2. I have been sick, bleeding, and exhausted ever since. And my husband and I have not been intimate for over 4 months.
Omg. I read ur entire blog n I'm so sad for u! Thank u for taking the time to write that for pple like myself that is considering the procedure n wld have to pay cash for it. I will keep u in my prayers! Make sure u r taking iron! Since ur losing blood. Take care of urself!
Look each other up on facebook or something so you guys can talk and people looking for answers can get them without having to scroll through your ridiculously long conversation.
I'm also still bleeding daily after a Novasure balloon ablation. I had it for Endometriosis as I've had laser treatment and they refuse to do a hysterectomy as i am 36 and have no children. But have never wanted them. I even went back on the pill continuously to stop the bleeding but to no avail. I'm so fed up.
Here it is 11 months later and I've only JUST seen your response, Carolyn! This whole EA outrage had become so consuming, it was affecting my ability to meet deadlines so I guess I must've stepped away to try to function. But I'm so very sorry I'm only just reading this now! You gave us so much of yourself here and I want you to know how affected I am by your struggles and the intellect and energy and humor with which you face them. You are an amazing woman.
A friend of mine said once that it's a far braver thing to have fears and face them than to never have been afraid at all. I think the same holds true for strength - real strength comes only after moments of weakness. The higher we have to climb up to get out of the muck and mire, the stronger we are. And you, my online friend, are a powerhouse!
So, a brief update on my EA legal front - neither of the 2 lawyers with whom I spoke would take my case. The first one thought long and hard on it, but alas, they both said it wasn't worth it financially. Since I'm self-employed, it would be near impossible to show the impact on my income and my "injuries" are more "inconvenient" than life-threatening. I was given the contact info for a government unit called MQAC (I kid you not) - Medical Quality Assurance Commission - and will be filing a complaint on BOTH doctors. Looks like that's my only option at this point. Not severe enough, I feel, but at least it's something. It means that there will be a probe of some kind and they'll have to explain themselves. Wish I could be a fly on that wall.
An update on my post EA condition - the daily spotting and gushes continued for 7 months from the date of the procedure and then suddenly stopped. Suddenly. Just like that. But what has followed has been even more unfathomable. Since August (currently 8 months since), I am rendered completely non-functional for 3 days every month because what has replaced the spotting is an EXCRUCIATING PAIN like no pain I've ever experienced - always showing up on the 2nd day of my period, always doubling me over, always making me cry, always lasting 3 days. The first time it happened, I thought I was dying. I phoned the on-call doc on a sunday and we debated whether I should head into urgent care. Ultimately, I toughed it out because it seemed clear it wasn't something life-threatening like appendicitis. 2 days later, it was gone - only to return with a vengeance 28 days later. It's not just cramps - not even just labor-like cramping - it's worse than any pain I've ever experienced. EVER. It starts low, in the uterus, then starts to climb up into my intestinal tract as well so that my entire abdomen is affected, bloated, painful to the touch, so sharp, so constant. I switched gynos and my lovely and smart new doc ordered a CT scan and another ultrasound - neither of which showed anything of concern (though neither was done while I was in the throes of the pain) - except to confirm, yet again, the botched EA job. Coupled with my new PCP doc, they've mostly ruled out adenomyosis and endometriosis (doesn't suddenly appear at 48) and we are left with a mystery that makes it impossible for me to fully function. Pre-ablation, I used to try to avoid flying for work on the heaviest days of my period because of the fear of bleeding through tampons and pads - now, I have to avoid traveling during those times because of the debilitating pain. Out of the ashes and into the fire.
The only explanation these new docs can come up with is scar adhesions. Best guess - because hot-shot left the endometrium at the top of my uterus, it still sheds, and when the live tissue reaches the dead scar tissue, it tries to shed that too - which of course, it can't, and that tugs and pulls and causes pain, until the hormones tell my uterus to give up and let dead dogs lie. Until next month.
My options are 1) an Ibuprofin and Tylenol cocktail every 4-6 hours for 3 days straight (which I'm doing but doesn't even begin to TOUCH the pain - no riding my horse those 3 days either); 2) hormonal therapy (now we're going to mess with my hormones???) or the pill to stop my periods for a time (I'm 49 and at that age, the threat of stroke on the pill worries me); or 3) hysterectomy (and that's not gonna happen).
I have not confronted hot-shot about the pain - but I will. He has no clue what he's left me with - nor is he being stopped from leaving others this way. I'm composing a speech and my husband and I will go in and face him together. I will make him look and listen to what he did. And then, I'll file my complaint with the aptly named MQAC.
And re: that medical insurance thing - I am RIGHT there with you. In fact, a doc I had briefly in the past several months (I'm no longer seeing her - turns out she was a fan of hot-shot) submitted a bill to my insurance company which included TWO appointments for me back to back on one particular day - one was the "Wellness Visit" (you know, the routine blood pressure check, heart-rate, cholesterol labs, poke your boobs, etc you get every year) for which I went to see her, and the second was an "Office Visit".... When I saw the EOB and saw that my insurance company was not going to pay for the "Office Visit" portion, I called my insurance and asked them to clarify - they said that "no medical necessity" had been established for the second appointment on the same day. I told them there was only ONE appointment, even though clearly I'd been billed for two. The total bill for 30 minutes in the doc's office (after ME waiting for HER for 35 minutes) was a whopping $550! I'd only gone to see her for my annual visit. When I spoke to the doc's billing department, they said that it was just a matter of resubmitting the bill - they would include the proper code for the "Office Visit" this time and all would be fine. But I told them that my concern was not just whether insurance would pay for it - but why the hell were they charging me for TWO appointments when I'd only had one? The billing gal asked me if anything else was discussed at my appointment besides general wellness... Boy, that was interesting hearing her try to explain what were considered general wellness discussions as opposed to a discussion I wasn't "allowed" to have in a general wellness appointment! Finally she asked if I had a cough. I said I had (which I did) but that I didn't go in to see the doc for that. She said they bill for an office visit if a patient comes in with - and discusses - an ailment. I've since continued to make a stink about it - and have not yet received a bill. I'm very curious to know what I'll actually be billed for in the end. Not a big fan of this kind of medical practice.
Anyway. Back to endometrial ablation....
Carolyn, I'm so glad that your procedure helped! That's very good news. I hope it's still the case today, 11 months later. And I hope that I don't have a lot of company in the post-EA debilitating pain arena - but preliminary research online shows I do. There are a hell of a lot of us out there who need to stand up to this procedure and make them stop throwing it around like a cure-all with a worst-case scenario of just not working. It can end up a LOT worse than that.
A friend of mine said once that it's a far braver thing to have fears and face them than to never have been afraid at all. I think the same holds true for strength - real strength comes only after moments of weakness. The higher we have to climb up to get out of the muck and mire, the stronger we are. And you, my online friend, are a powerhouse!
So, a brief update on my EA legal front - neither of the 2 lawyers with whom I spoke would take my case. The first one thought long and hard on it, but alas, they both said it wasn't worth it financially. Since I'm self-employed, it would be near impossible to show the impact on my income and my "injuries" are more "inconvenient" than life-threatening. I was given the contact info for a government unit called MQAC (I kid you not) - Medical Quality Assurance Commission - and will be filing a complaint on BOTH doctors. Looks like that's my only option at this point. Not severe enough, I feel, but at least it's something. It means that there will be a probe of some kind and they'll have to explain themselves. Wish I could be a fly on that wall.
An update on my post EA condition - the daily spotting and gushes continued for 7 months from the date of the procedure and then suddenly stopped. Suddenly. Just like that. But what has followed has been even more unfathomable. Since August (currently 8 months since), I am rendered completely non-functional for 3 days every month because what has replaced the spotting is an EXCRUCIATING PAIN like no pain I've ever experienced - always showing up on the 2nd day of my period, always doubling me over, always making me cry, always lasting 3 days. The first time it happened, I thought I was dying. I phoned the on-call doc on a sunday and we debated whether I should head into urgent care. Ultimately, I toughed it out because it seemed clear it wasn't something life-threatening like appendicitis. 2 days later, it was gone - only to return with a vengeance 28 days later. It's not just cramps - not even just labor-like cramping - it's worse than any pain I've ever experienced. EVER. It starts low, in the uterus, then starts to climb up into my intestinal tract as well so that my entire abdomen is affected, bloated, painful to the touch, so sharp, so constant. I switched gynos and my lovely and smart new doc ordered a CT scan and another ultrasound - neither of which showed anything of concern (though neither was done while I was in the throes of the pain) - except to confirm, yet again, the botched EA job. Coupled with my new PCP doc, they've mostly ruled out adenomyosis and endometriosis (doesn't suddenly appear at 48) and we are left with a mystery that makes it impossible for me to fully function. Pre-ablation, I used to try to avoid flying for work on the heaviest days of my period because of the fear of bleeding through tampons and pads - now, I have to avoid traveling during those times because of the debilitating pain. Out of the ashes and into the fire.
The only explanation these new docs can come up with is scar adhesions. Best guess - because hot-shot left the endometrium at the top of my uterus, it still sheds, and when the live tissue reaches the dead scar tissue, it tries to shed that too - which of course, it can't, and that tugs and pulls and causes pain, until the hormones tell my uterus to give up and let dead dogs lie. Until next month.
My options are 1) an Ibuprofin and Tylenol cocktail every 4-6 hours for 3 days straight (which I'm doing but doesn't even begin to TOUCH the pain - no riding my horse those 3 days either); 2) hormonal therapy (now we're going to mess with my hormones???) or the pill to stop my periods for a time (I'm 49 and at that age, the threat of stroke on the pill worries me); or 3) hysterectomy (and that's not gonna happen).
I have not confronted hot-shot about the pain - but I will. He has no clue what he's left me with - nor is he being stopped from leaving others this way. I'm composing a speech and my husband and I will go in and face him together. I will make him look and listen to what he did. And then, I'll file my complaint with the aptly named MQAC.
And re: that medical insurance thing - I am RIGHT there with you. In fact, a doc I had briefly in the past several months (I'm no longer seeing her - turns out she was a fan of hot-shot) submitted a bill to my insurance company which included TWO appointments for me back to back on one particular day - one was the "Wellness Visit" (you know, the routine blood pressure check, heart-rate, cholesterol labs, poke your boobs, etc you get every year) for which I went to see her, and the second was an "Office Visit".... When I saw the EOB and saw that my insurance company was not going to pay for the "Office Visit" portion, I called my insurance and asked them to clarify - they said that "no medical necessity" had been established for the second appointment on the same day. I told them there was only ONE appointment, even though clearly I'd been billed for two. The total bill for 30 minutes in the doc's office (after ME waiting for HER for 35 minutes) was a whopping $550! I'd only gone to see her for my annual visit. When I spoke to the doc's billing department, they said that it was just a matter of resubmitting the bill - they would include the proper code for the "Office Visit" this time and all would be fine. But I told them that my concern was not just whether insurance would pay for it - but why the hell were they charging me for TWO appointments when I'd only had one? The billing gal asked me if anything else was discussed at my appointment besides general wellness... Boy, that was interesting hearing her try to explain what were considered general wellness discussions as opposed to a discussion I wasn't "allowed" to have in a general wellness appointment! Finally she asked if I had a cough. I said I had (which I did) but that I didn't go in to see the doc for that. She said they bill for an office visit if a patient comes in with - and discusses - an ailment. I've since continued to make a stink about it - and have not yet received a bill. I'm very curious to know what I'll actually be billed for in the end. Not a big fan of this kind of medical practice.
Anyway. Back to endometrial ablation....
Carolyn, I'm so glad that your procedure helped! That's very good news. I hope it's still the case today, 11 months later. And I hope that I don't have a lot of company in the post-EA debilitating pain arena - but preliminary research online shows I do. There are a hell of a lot of us out there who need to stand up to this procedure and make them stop throwing it around like a cure-all with a worst-case scenario of just not working. It can end up a LOT worse than that.
JanDer - I'm SO sorry to hear about your experience! It looks like it's been 8 months since your post... Please post again and let us know how you're feeling? Hoping it's all smooth sailing now!
I had Endometiral Ablation 3 weeks ago. I have had spotting every day since the surgery. After reading your post, I am afraid I will have the same issue. When I went to the Gyno for my check-up, I asked her about it and she said I could spot for 6 weeks. Some days there is barely enough to talk about then others are "WTF"! I hope your issue has cleared up by now. I would love to hear how you're doing. This will give me some hope.
Hi. The timing of your post is uncanny. I'll post the whole follow-up report soon - and hopefully your experience will not reflect mine - you're still in the early stages and I think the spotting is probably pretty normal - but unfortunately, I can't offer a whole lot of hope since my ablation led to a necessary, unexpected and total hysterectomy last week. I'm still in disbelief - having been healthy all my life with totally regular, if somewhat heavy, periods before this unforgivable circus - but I'm healing okay. After the daily spotting finally stopped (6 months post-EA-op - about a year ago) the scar adhesions began to cause intense pain with each period. Doctors were scratching their heads - but my gut (no pun) told me what was going on. And it turns out, I was right. I pushed for tests until they finally saw something. And boy, did they. Because the top portion of my uterus had not been ablated, I was still bleeding each month and the passage of the blood through all that lower portion scarring and adhesions was getting more and more difficult --- so it started to back up into my fallopian tubes (which had NOT been tied, unlike most post ablation syndrome cases) along with endometrial tissue - and a few weeks ago, in such terrible pain I was vomiting, I had an ultrasound that revealed an 11cm mass (huge!!!) on my left ovary and fallopian tube. It had to go - and in the end, so did my uterus and ovaries, because the damage that had been done was irreparable and the blood back-up would likely continue. My (new) docs were concerned it could be cancer so I had the scare of my life and my poor family's lives for two weeks until pathology during surgery revealed it was a benign mass. I'll know more details after my post-op appt tomorrow - but the general consensus is that the mass consisted of all that backed up blood and tissue, which had, at times, leaked out and into my pelvic area, crossed over into my lungs, and endometriosis had formed on my bowels -- all as a result of an endometrial ablation I never requested in the first place. Maybe my case is an isolated one, but according to my (new) gyn/onc surgeon, he's seeing more and more of these cases as time goes on and thank god, he is NOT a fan of the EA - unlike the former gyn/onc who used me as a guinea pig. I will be putting together a report of some kind and making sure word gets out there so women aren't blindly led to believe this is a "safe" and "easy" solution to heavy bleeding. My best wishes to you for an easy time of it. I know there are many who come through this with flying colors. May you be one of those! Sarah.
by the way, I showed up as "guest" in my post above, but I'm flikwrtr.
Hi, I'm Erica. All I can say is WOW! WOW! WOW! I had the EA August the 18th.. yep, STILL BLEEDING. Im getting fed 10mg oral Provera 4 times per day, and its not working. I'm in a situation where I have to move to another state, so I have to find another Dr. I have an appointment for a post -op 09/04/14.. and I really DONT want to see him anymore. Reading the comments makes me want to go to a new Dr. Not that I don't trust my current, but maybe a new Dr will see something my current one doesn't. He's human, accidents can happen. Im very depressed over this, I'm 38 yrs old. My fiance is 36, with no sex life. Im dizzy out of breath... I'm upset with the world. I BEGGED for a hysterectomy! My Dr said my insurance needs to see he has tried something else before they will pay for it. MY GOODNESS!!!!!!
Do you think he will help me get "Latest Posts" working without all the posts disappearing?
Praise God Jehovah for your response. It is so insightful and true. It's just what I needed to hear sitting here in pain. Love you and may God continue to bless you.
I had the ablation surgery too and I am going on my 5th week after surgery and my doctor told me that he mentioned prolonged bleeding which he never did and I went to see him on yesterday and now he is saying that the bleeding may not stop and I would probably have to get a hysterectomy. So now I feel like the surgery made me worse off than before I had a cycle now it's every day bleeding. I am going to pray and ask God to heal my body from this bleeding every day. I believe that prayer will change things