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Post Ablation Syndrome, Really! Post Ablation Syndrome, Really!

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  #1  
Unread 01-19-2009, 09:36 PM
Post ablation syndrome? Really!

I am 39 years old. I had a tubal ligation at age 26 without incident. At age 37I began very heavy bleeding with menstruation and severe cramps that did not stop for almost 9 months straight. I was very ill and anemic. After a vaginal ultrasound it was determined that the cause was several uterine and ovarian fibroids. I also have prolapsed uterus. My gynecologist gave me 2 options. The novasure uterine ablation or a hysterectomy. (with no option of keeping the cervix , I was afraid that I would lose gratification with my husbasnd. I have enough difficulty with my drive as it is.)
She really pushed the novasure and ensured me that it would be just as effective as the hysterectomy without
the post op pain and that I would have a shorter recovery. She told me I would not even have a menses anymore. So I chose the novasure, I also had a d&c . I never stopped menstruation, but it is regular at least as far as time, every 28 days for 3-4 days. For the last 6 months or so the blood is very thick and very dark for the first 16 hous or so, then becomes heavy and bright red.I could live with this, but Unfortunately it seems that with every cycle the pain becomes more and more debilitationg. Not one over the counter medication touches this pain. I have cramps that do not allow sleep. The cramps go from by abdomen through my buttocks and down the back of my knees. I am just devastated by this pain , it just brings me to my knees . The pressure and bloationg are also unbearable. Forget about being able to work. I have nausea and constpation as well with my cycle now. As of the last 4 months I'm also experincing dizziness, sweats and scariest of all, heart palpitations . and only during menstruation.
I am from a small town with one gynecologists office and I really do not want to go back there. And since
then have lost my health insurance. No-one can tell me what the heck is going on. This is the very first time Ive heard of this post ablation syndrome. Every month
it feels as if I could die.. Then it goes away. But I just dread the next cycle.. Can it get worst? I really worry about the palpitations. I was raised by my grandma on an old Polish farm.. Girls just deal with pain... But could this become dangerous? I know I have to get back in to see a doctor. I only have about 30 hours of pain left and I can get back to my life again. For 28 days.
please help me!! Is a hysterectomy the only option I have?
  #2  
Unread 01-19-2009, 10:20 PM
Post Ablation Syndrome, Really!

Amason,


The problems you are having sound much like the ones I had before having an ablation. The reason I had an ablation were because I was having heavy, heavy, heavy periods to the point I need blood transfusions. I had the sweats, dizziness and the heart palpitations. The blood transfusions helped but, when it was time for my period, it went out the door. My doctor offered me the ablation which would stop my periods and she told me they would return to normal. Well, they didnt. I opted last July to have a hysterctomy. This was the best operation I could have ever had. I have three wonderful children and didn't want anymore. My energy is up, my sex drive is up and I feel alive and happy. I hate that you are in a small town because I would suggest to get a second opinon but, in your case, I would say to sit down and talk it over with your husband. If you two do not want anymore kids, then you should consider this. I had a LAVH (laparoscpic assisted vaginal hysterectomy). Also, do your research before doing this procedure because once it's done, that is it. If you need anymore information, please feel free to ask.
  #3  
Unread 01-19-2009, 10:48 PM
Post Ablation Syndrome, Really!

Hi Amason

I am so sorry you are suffering like this. Although I'm still glad I tried an ablation, I did develop horrid cramps after mine. I had a confirmed case of adenomyosis, so we knew that was a big part of the problem. One of the many problems my ultrasound showed was blood being trapped under the scarred off lining. I was told the extreme cramps were my uterus trying to expel this. I had already tried hormones before this and was at the end of my rope, so I was told a hyst was my only option left.

My pain did get progressively worse every month and was just more than I could stand so I didn't hesitate to book the surgery. I did go ahead with a second opinion first though. Being without insurance can be really rough. Perhaps you can ask about hormone therapy to stop you from having a cycle every month - at least until you get things under control.

If you don't like the GYN in town, talk to you primary care physician to see what s/he recommends for now - since you need to have your other symptoms looked into as well. Many of our sisters do travel to find the right doctor. It can make things more challenging, but many feel it's worth it.

A total hysterectomy (meaning all of the uterus, including the neck (cervix) ) is usually done for a prolapse -the cervix is part of the problem and isn't providing support anyway. I don't miss my cervix at all.

I hope you find a doctor you trust and a solution to your suffering.
Sending a gentle your way.
Beth
  #4  
Unread 01-19-2009, 11:01 PM
Post Ablation Syndrome, Really!

I had a Novasure ablation in May 2008, which was a complete failure. I had a fairly large fibroid, and my gyno convinced me that the ablation would reduce my bleeding by 70-80%. I wish I never had it done! The bleeding was worse, I had more cramping, and had horrible mood swings. The only good thing about it was that I had already come to grips with the fact that I'd never have children by the time I went ahead with my hysterectomy. I felt very confident in the surgeon who did my hysterectomy, because he was a gynocological oncology surgeon and was one of the few in my area with expertise in daVinci robotic assisted surgeries.
Also, since you say you don't have insurance, try to look into some clinical trial for your condition. They usually cover most of the medical expenses and are usually affiliated with a research or teaching hospital. www.clinicaltrials.gov
  #5  
Unread 01-19-2009, 11:08 PM
Post Ablation Syndrome, Really!

Amason,

I feel your pain. I had the Novasure procedure done in December 2007. I had nothing but problems afterwards. Still bleeding large clots for several months after the procedure. Then it became very painful. I always felt some discomfort during my period but not the pain I was experiencing now. I ended up in the emergency room because of the pain. They did a CT scan and said I either passed a kidney stone or ruptured an ovarian cyst. Well, neither was the case. I went to my OB/GYN and had a vaginal ultrasound, also the doctor tried to put saline up inside me but it wouldn't stay. The doctor ended up doing a D&C and tried to do the balloon ablation but couldn't. The pain was caused from the scar tissue after the Novasure ablation. During my cycle the blood couldn't get through and was causing my severe pain. I had the D&C done in December 2008 and my periods are the same but the pain is sooooooo much better. I still get the cramps and back pain but not as severe. When they did the last ultrasound they found a cyst on my ovary, long story short it hasn't gone away and this past Friday I had to go see a Gynelogic Oncologist. Tomorrow I'm going for more tests. I know for sure that I have to have a hysterectomy. I've been bleeding since December 19th (the day I had the D&C). Don't think I can take anymore of this!!!

I feel for you. I know what your experiencing. It's like 5 days of every month you are in pain and after a while it gets annoying. I hope you get the help you need. You probably should get back into the OB/GYN's office.

GOOD LUCK TO YOU!
  #6  
Unread 01-21-2009, 08:49 AM
Post Ablation Syndrome, Really!

I also had the Novasure. I really wish I never had it, too. Afterwards, I read all kinds of negative things about it in my Google searches. Lots of women have had the same effects I have; a small period of no problems (2-3 months) followed by horrible cramping, heavier bleeding, and now, for me, bleeding that has lasted 13 months with 11 days off.....My friends tell me that they don't see how I am doing this...but I just keep hoping next month will be better....

Now I am being told I have "abnormal cells" and they are hinting at cancer. My advice to anyone out there? Be very careful about the ablation. It doesn't always work on everyone's problems, but the advertising you read about it sure makes you think so!
  #7  
Unread 01-21-2009, 09:25 AM
Post Ablation Syndrome, Really!

I too am a victim of ablation. It worked for a while and very well too. No periods No bleeding No pain for about 2 years. And then the pain came back first and then the bleeding started again heavier and heavier each month and now I'm scheduled for my hyster on Feb 17. I also worked with a woman who had her ablation shortly after I had mine. Within a year of hers she went in for a hyster. I didn't want the ablation but my gyno said I was too young for a hyster at the time I was 33, so I agreed.
  #8  
Unread 01-21-2009, 10:55 PM
Post Ablation Syndrome, Really!

Thanks to all of you for your concern and support. I'm just so shocked that so many women have had this procedure fail so miserably. I agree... it's defenitely not at all the way it was presented to be. It is also surprising that there is not a lot of information on it. The horrendous pain is one thing, but the heart palpitations are really scarry. I worry that there is so much pressure that things could rupture and I could hemmorrage. I don't know. I did make an appointment to talk to my primary provider tomorrow for at least a consultation. We'll start there.. And thanks for being here!!
  #9  
Unread 01-23-2009, 06:16 PM
Post Ablation Syndrome, Really!

  Quote:
I'm just so shocked that so many women have had this procedure fail so miserably. I agree... it's defenitely not at all the way it was presented to be.
I was disappointed when mine failed too, but it gave me the peace of mind knowing I had tried to avoid a hysterectomy/major surgery. I have seen numerous complications from "routine" hysts. We never know ahead of time who will have complications and who will do well. I felt peace knowing if anything went wrong with the surgery or recovery that I wouldn't look back with regrets for not trying other options to see if the hyst was really necessary in the first place. My sister was furious when her GYN insisted on the ablation instead of doing the hyst she wanted. (She was sure it would fail.) Her ablation was several years ago and she has not had a period or pain since.

Ablation isn't for everyone, but it does help many women. I have family, friends, and co-workers who are enjoying their improved health from ablation success. To be fair, we have to remind ourselves that the results we read here (on a hysterectomy support site) are skewed - because those women who have had success from their ablation rarely have the need to post here.

Best wishes & s to you on your journey toward better health.
  #10  
Unread 01-26-2009, 07:11 PM
Post Ablation Syndrome, Really!

Your problems with cramps sound like the problems I had that led me to have an ablation, except that mine did not radiate to my legs. It was so debilitating that I could do nothing but lie curled up in a fetal position the whole time, sometimes with tears running down my cheeks. I could not work, drive, or even follow a conversation. This went on just about every month for about a decade-from when I was in my mid teens to when I had the ablation at age 25. I was having 2 week long periods by that time too. The pain went away.....but the bleeding never did and a year later, my periods lengthened back out to 2 weeks and stayed that way, which led to the hysterectomy. I know what you mean about having it all just go away, and then return each month, and dreading each cycle all too well.

It sounds like your doctor misinformed you about the Novasure. It isn't guaranteed to stop bleeding, though it should reduce it. Were your fibroids removed when she did the Novasure?

It does sound like a hysterectomy might be your best option with those problems. As for the other symptoms, I am not sure what to say. Some of them sound like what started happening to me from September-November, after several months of 2 week long periods. I got so weak and had so many of these attacks that at the end I couldn't drive. I even went to doctor's appointments in the middle of one a couple of times, and they checked me out but couldn't find anything wrong. I still don't know what it was about.

You are in a very rough situation. I haven't had health insurance since January 2004 and I know how that goes. The part about having one gynecologist in town is rough too. I saw many, many doctors who refused to even consider surgery until my PCP referred me to one who would listen to me. Hang in there is my best advice for now.
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