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post ablation tubal sterilization syndrome (updated) post ablation tubal sterilization syndrome (updated)

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  #1  
Unread 10-04-2010, 04:46 PM
post ablation tubal sterilization syndrome (updated)

I was just recently diagnosed with post ablation tubal sterilization syndrome.

After five(5) months of excrutiating cyclic pain, I finally have some answers as to the cause of this pain.
I had a tubal ligation 10 years ago and the Novasure ablation 2 years ago. Approx 5-6 months ago, I started experiencing very sharp, knife like, jabbing and twisting pains on my lower right side. The pain also radiates to my back and front thigh. NO Pain medicine helps. I've tried Vicodin, 800mg Ibuprophen, aleve, tylenol, aspirin, to no avail.

I've had light spotting since the ablation, which was initially done for heavy bleeding and clots.

A recent transvag U/S showed trapped blood in my right fallopian tube and uterus. A hysterectomy will be scheduled at next weeks appointment.

I believe far too many of these ablations are performed on women who are not good candidates for success.
to name a few:
*a tilted or enlarged uterus
*uterine fibroids
*prior c-section
*uterine dysplasia
*undiagnosed endometriosis
*uterine infection
*tubal ligation (although I read where this is not a contraindication) BUT IT SHOULD BE!

Anyway, it amazes me how many medical personnel are not aware of this condition. When new procedures are performed as often as ablations, ALL medical personnel should be made aware of the post ablation signs, symptoms and complications.

One Gyne told me that the testing done in trials prior to the FDA approval, are done on perfect patients. Therefore, the failure rate would naturally be low. So when your Gyne talks to you about safety and statistics, they will naturally look good. Dr's need to start referring patients to these forums to hear the real stories, which may never make it to the current journals of medicine.
I don't think adverse events are reported to the FDA, primarily because there may not be a problem with the device, but with physician error. Lack of judgement on who is the proper candidate and sometimes lack of knowledge in the proper use of the device.

We are the true test subjects. Unfortunately, this often comes at a painful price and a lot of run around trying to get a proper diagnosis.
I guess they call it "practising" medicine for a reason.
  #2  
Unread 10-04-2010, 05:14 PM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by cantw84surgery View Post
I was just recently diagnosed with post ablation tubal sterilization syndrome.

After five(5) months of excrutiating cyclic pain, I finally have some answers as to the cause of this pain.
I had a tubal ligation 10 years ago and the Novasure ablation 2 years ago. Approx 5-6 months ago, I started experiencing very sharp, knife like, jabbing and twisting pains on my lower right side. The pain also radiates to my back and front thigh. NO Pain medicine helps. I've tried Vicodin, 800mg Ibuprophen, aleve, tylenol, aspirin, to no avail.

I've had light spotting since the ablation, which was initially done for heavy bleeding and clots.

A recent transvag U/S showed trapped blood in my right fallopian tube and uterus. A hysterectomy will be scheduled at next weeks appointment.

I believe far too many of these ablations are performed on women who are not good candidates for success.
to name a few:
*a tilted or enlarged uterus
*uterine fibroids
*prior c-section
*uterine dysplasia
*undiagnosed endometriosis
*uterine infection
*tubal ligation (although I read where this is not a contraindication) BUT IT SHOULD BE!

Anyway, it amazes me how many medical personnel are not aware of this condition. When new procedures are performed as often as ablations, ALL medical personnel should be made aware of the post ablation signs, symptoms and complications.

One Gyne told me that the testing done in trials prior to the FDA approval, are done on perfect patients. Therefore, the failure rate would naturally be low. So when your Gyne talks to you about safety and statistics, they will naturally look good. Dr's need to start referring patients to these forums to hear the real stories, which may never make it to the current journals of medicine.
I don't think adverse events are reported to the FDA, primarily because there may not be a problem with the device, but with physician error. Lack of judgement on who is the proper candidate and sometimes lack of knowledge in the proper use of the device.

We are the true test subjects. Unfortunately, this often comes at a painful price and a lot of run around trying to get a proper diagnosis.
I guess they call it "practising" medicine for a reason.
Your situation strikes a cord with me personally..especially when you say the pain radiates down your front thigh, i have this pain constantly, along with the same sharp piercing pain. This all started a year after my ablation, i am now scheduled for a hysterectomy in 2 weeks.
  #3  
Unread 10-04-2010, 05:33 PM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by leace25 View Post
Your situation strikes a cord with me personally..especially when you say the pain radiates down your front thigh, i have this pain constantly, along with the same sharp piercing pain. This all started a year after my ablation, i am now scheduled for a hysterectomy in 2 weeks.
I've learned that the pain in the thigh can be due to:
a) torsion of the fallopian tube
b) inflammation of the tube affecting the sciatic nerve
c)both


Did you previously have a Tubal Ligation?
Just curious as to how often this happens post ablation/sterilization.
After your hysterectomy, I would definately ask what condition your tube and uterus were in. Often the tube is not only swollen, but often necrotic and even gangerous.

Best of luck to you. I hope this cures the problem for you.
  #4  
Unread 10-04-2010, 05:36 PM
Re: For you ladies who had an ablation

I had an ablation 2 years ago May due to having 2 week heavy periods. I bled and cramped for about 2 months. It was great for about a year, then the cramps started. In April of this year the cramps so bad I ended up in the ER 2 x's. I just knew something was about to explode in there. I actually thought it was appendicitic. They said maybe it was an ovarian cyst that burst. After seeing a gastroenterologist, my regular doctor, then my gyn. I just about gave up hope. I ended up changing gynecologist because the cramps/abdominal pain just shouldn't be normal. On my first visit with her, she immediately said, it sound like blood stuck in my uterus. An ultrasound confirmed the scar tissue on the bottom of the uterus and blood in the upper part. The ablation only took at the bottom part of the uterus, which I was told is common. Anyway, my uterus is constantly cramping to get rid of the blood but it can't. Now my CA-125 levels are elevated which is a sign of most likely an infection. I'll find out tomorrow. Going in for a laproscopic uterus removal and most likely taking the right ovary. I am definitely not an advocate of the ablation. I also recommend keep seeking help for that pain. Its not normal to be in pain. I hope the best for you. There are successes out there.
  #5  
Unread 10-04-2010, 05:44 PM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by rcjc40 View Post
I had an ablation 2 years ago May due to having 2 week heavy periods. I bled and cramped for about 2 months. It was great for about a year, then the cramps started. In April of this year the cramps so bad I ended up in the ER 2 x's. I just knew something was about to explode in there. I actually thought it was appendicitic. They said maybe it was an ovarian cyst that burst. After seeing a gastroenterologist, my regular doctor, then my gyn. I just about gave up hope. I ended up changing gynecologist because the cramps/abdominal pain just shouldn't be normal. On my first visit with her, she immediately said, it sound like blood stuck in my uterus. An ultrasound confirmed the scar tissue on the bottom of the uterus and blood in the upper part. The ablation only took at the bottom part of the uterus, which I was told is common. Anyway, my uterus is constantly cramping to get rid of the blood but it can't. Now my CA-125 levels are elevated which is a sign of most likely an infection. I'll find out tomorrow. Going in for a laproscopic uterus removal and most likely taking the right ovary. I am definitely not an advocate of the ablation. I also recommend keep seeking help for that pain. Its not normal to be in pain. I hope the best for you. There are successes out there.
Absolutely agree! It is NOT normal to be in pain. You have to talk slow and firm in describing this to most medical personnel. Keep questioning each and every one of them if they are even familiar with post ablation syndrome and post ablation sterilization syndrome. MOST are NOT!

My WBC is elevated when I am cyclic and in excruciating pain, then goes down when the cycle is over I still have discomfort all month long.. and the diagnostic tests show blood still in the tube and uterus after my "period"is over.
So, it never fully goes away. IT ONLY GETS WORSE!

Never thought I would say, I can't wait for surgery!


Best wishes to you tomorrow!!
  #6  
Unread 10-04-2010, 09:05 PM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by cantw84surgery View Post
I was just recently diagnosed with post ablation tubal sterilization syndrome.

After five(5) months of excrutiating cyclic pain, I finally have some answers as to the cause of this pain.
I had a tubal ligation 10 years ago and the Novasure ablation 2 years ago. Approx 5-6 months ago, I started experiencing very sharp, knife like, jabbing and twisting pains on my lower right side. The pain also radiates to my back and front thigh. NO Pain medicine helps. I've tried Vicodin, 800mg Ibuprophen, aleve, tylenol, aspirin, to no avail.

I've had light spotting since the ablation, which was initially done for heavy bleeding and clots.

A recent transvag U/S showed trapped blood in my right fallopian tube and uterus. A hysterectomy will be scheduled at next weeks appointment.

I believe far too many of these ablations are performed on women who are not good candidates for success.
to name a few:
*a tilted or enlarged uterus
*uterine fibroids
*prior c-section
*uterine dysplasia
*undiagnosed endometriosis
*uterine infection
*tubal ligation (although I read where this is not a contraindication) BUT IT SHOULD BE!

Anyway, it amazes me how many medical personnel are not aware of this condition. When new procedures are performed as often as ablations, ALL medical personnel should be made aware of the post ablation signs, symptoms and complications.

One Gyne told me that the testing done in trials prior to the FDA approval, are done on perfect patients. Therefore, the failure rate would naturally be low. So when your Gyne talks to you about safety and statistics, they will naturally look good. Dr's need to start referring patients to these forums to hear the real stories, which may never make it to the current journals of medicine.
I don't think adverse events are reported to the FDA, primarily because there may not be a problem with the device, but with physician error. Lack of judgement on who is the proper candidate and sometimes lack of knowledge in the proper use of the device.

We are the true test subjects. Unfortunately, this often comes at a painful price and a lot of run around trying to get a proper diagnosis.
I guess they call it "practising" medicine for a reason.


I got a bit panicked after the ablation surgery I had on Sept. 24th. because I was reading negative things plus how the long term effects aren't still known. It stinks because I really have had non stop cramping and discharge among a bladder feeling that doesn't feel right but my emotions have been generally a bit better but I have been angry/sad for hours at a time as well.

I haven't had the tubal but it seems women who had it done have had issues. I agree that more information and stories need to be listened and told.

I thought I would be running a marathome the day after and I am still down but 95 percent better. I had anesthesia problems.

Thanks for sharing your story with me!
  #7  
Unread 10-05-2010, 08:56 AM
Re: For you ladies who had an ablation

Hi.

My Ablation story is much like the others that have already posted. After two years of heavy, 3 week long, painful periods that left me anemic, I had an ablation. (no tubal ligation in my case...not then, not since, not ever...) Results were wonderful for 10 months. No blood at all, and much less pain. 10 months later...old blood discharge and more pain. This has progressively gotten worse over the last year. Now I am in pain more than not...and have either old or fresh blood/discharge more often than not....randomly throughout the month with no pattern at all. Pain is concentrated on the right (which has sent me to the ER twice thinking I had appendicitis..and had several docs thinking I had Crohn's disease since that is where the pain usually is for that...)

Over a year ago, we moved and I hadn't seen a gyn since moving, so I finally researched and found a great doc in the area. He ordered an ultrasound and sonohysterogram. The sonohysterogram (where they infuse saline into your uterus to inflate it in order to get a better look) failed because there was a mass of adhesions in the endometrial canal that had fused my uterus closed. Only a tiny portion of my uterus could fill and open, and in there were several polyps and trapped blood. My only option now is taking the uterus out. My gyn said the condition of my uterus is consistant with post ablation syndrome.

A side note about all this...just wanted to share my doc's opinion on ablation. He said that he no longer will do ablation on women younger than 40, and would prefer not to do it under 45 but in some cases will between 40-45. In his experience it fails on the younger women more often than not and he feels (again...I know this is just one docs opinion, but I thought it was interesting..) the reason for the huge percent of failure is because the hormones that are still raging thru ...telling the uterus to prepare for pregnancy etc.. He thinks that even with a destroyed lining, the uterus still "wants" to prepare for pregnancy (since ovaries are still telling it to) and this flush of hormones against a scarred uterus is what causes the adhesions inside the uterus and this results in severe pain, and blood getting trapped within the scar tissue. (because even if just a tiny spec of lining is left, it will bleed...but will likely get trapped due to scar tissue) This is why it can work for awhile, but sometimes ends up failing and causing problems in the long run...

I do want to add that I have had three C-sections, so I don't know how much that might play a role in the failed ablation/post ablation syndrome.
  #8  
Unread 10-05-2010, 09:53 AM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by RJS777 View Post
Hi.

My Ablation story is much like the others that have already posted. After two years of heavy, 3 week long, painful periods that left me anemic, I had an ablation. (no tubal ligation in my case...not then, not since, not ever...) Results were wonderful for 10 months. No blood at all, and much less pain. 10 months later...old blood discharge and more pain. This has progressively gotten worse over the last year. Now I am in pain more than not...and have either old or fresh blood/discharge more often than not....randomly throughout the month with no pattern at all. Pain is concentrated on the right (which has sent me to the ER twice thinking I had appendicitis..and had several docs thinking I had Crohn's disease since that is where the pain usually is for that...)

Over a year ago, we moved and I hadn't seen a gyn since moving, so I finally researched and found a great doc in the area. He ordered an ultrasound and sonohysterogram. The sonohysterogram (where they infuse saline into your uterus to inflate it in order to get a better look) failed because there was a mass of adhesions in the endometrial canal that had fused my uterus closed. Only a tiny portion of my uterus could fill and open, and in there were several polyps and trapped blood. My only option now is taking the uterus out. My gyn said the condition of my uterus is consistant with post ablation syndrome.

A side note about all this...just wanted to share my doc's opinion on ablation. He said that he no longer will do ablation on women younger than 40, and would prefer not to do it under 45 but in some cases will between 40-45. In his experience it fails on the younger women more often than not and he feels (again...I know this is just one docs opinion, but I thought it was interesting..) the reason for the huge percent of failure is because the hormones that are still raging thru ...telling the uterus to prepare for pregnancy etc.. He thinks that even with a destroyed lining, the uterus still "wants" to prepare for pregnancy (since ovaries are still telling it to) and this flush of hormones against a scarred uterus is what causes the adhesions inside the uterus and this results in severe pain, and blood getting trapped within the scar tissue. (because even if just a tiny spec of lining is left, it will bleed...but will likely get trapped due to scar tissue) This is why it can work for awhile, but sometimes ends up failing and causing problems in the long run...

I do want to add that I have had three C-sections, so I don't know how much that might play a role in the failed ablation/post ablation syndrome.

Sorry to hear about your pain.

I have read more than not, that the right side seems to be the most commor area of complaint. Wonder why this is?Please ask your Dr about the prior c-sections and relation to your failed ablation. There was most likely a scarring issue present in your uterus which could cause a less than optimal ablation to be performed.

I was 47 when I had my ablation. I am now 49.
With a tilted back Uterus, tubal ligation and suspected endometriosis, I don't feel I was a very good candidate for the ablation.
You are very well informed on the failure of the procedure. I also think the reason for so many failures are because physicians are performing these on not so great candidates and therefore the failure rate goes up! Unfortunately, we are becoming those statistics. :-(
Makes perfect sense if ovaries are entact, hormones will still produce the cycle for endo lining to regenerate. The failure to completely ablate the lining, due to various reasons, does cause complications, because of missing even a small area of tissue.
I think more testing needs to be done PRIOR to the procedure to cut down on the failure rate. Also, wonder how well the procedure/device works, since the testing is done on subjects that are "optimal" whatever this means?


Just wonder how these failures will affect the longtime statistics of future ablations? I think the failures need to be recorded and reported, to give a fair analysis in present time on the success and failure rates. They sure have changed over the years...thanks to forums like these where women can voice their personal history.
  #9  
Unread 10-05-2010, 10:18 AM
Re: For you ladies who had an ablation

I had my ablation October 2009, my doctor said I wouldn't have a period anymore or just a little spotting. Well the I still had a period that got heavier and more painful as time went. I also had spotting in between. The pain led me to the ER on two occasions thinking I was having a problem with my appendix, but alas it was just my period. The last time I went to the ER the doctor told me ''it's a womens problem'' and sent me for an ultrasound. The ultrasound showed no cysts to account for the horrible pain on my right side and some adenymosis and a large uterus.

I went to my gyn with the ultrasound reports and she said the pain was more then likely from the scar tissue that was covering the adenymosis. So now I'm wondering why she even performed the ablation in the first place!! I should mention that it was performed without having any ultrasounds done prior to determine if I was a good candidate and that I had a tubal ligation five years prior to my ablation. So because of all this, I had my hysterectomy September 28 of this year. And now I'm waiting for next month to see what happens with the pain I was experiencing before. I think I will go crazy if it is still there and I have to go back to my Gyn!
  #10  
Unread 10-05-2010, 12:19 PM
Re: For you ladies who had an ablation

  Quote:
Originally Posted by RoseTea View Post
I had my ablation October 2009, my doctor said I wouldn't have a period anymore or just a little spotting. Well the I still had a period that got heavier and more painful as time went. I also had spotting in between. The pain led me to the ER on two occasions thinking I was having a problem with my appendix, but alas it was just my period. The last time I went to the ER the doctor told me ''it's a womens problem'' and sent me for an ultrasound. The ultrasound showed no cysts to account for the horrible pain on my right side and some adenymosis and a large uterus.

I went to my gyn with the ultrasound reports and she said the pain was more then likely from the scar tissue that was covering the adenymosis. So now I'm wondering why she even performed the ablation in the first place!! I should mention that it was performed without having any ultrasounds done prior to determine if I was a good candidate and that I had a tubal ligation five years prior to my ablation. So because of all this, I had my hysterectomy September 28 of this year. And now I'm waiting for next month to see what happens with the pain I was experiencing before. I think I will go crazy if it is still there and I have to go back to my Gyn!
If you had the adenmyosis prior to to ablation (hard to diagnose DEEP adenmyosis, but possible on MRI) then an ablation was NOT right for you.
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