To anyone who's had an ablation or thinking about one
In searching desperately for some answers regarding my messed up organs, I ran across some interesting studies on ablations. I have three cysts on my ovaries, irregular bleeding three years after having an ablation, and the doctor was unable to perform an endometrial biopsy due to a closed cervix or blockage of the cervical canal. Here's what I found...The Oxford Journals reported that they followed 350 women who'd had an ablation. Of those 350, 12 needed a hysterectomy for various reasons within 3-36 months. When they examined the removed uteruses, they found that 5 of the 12 were distorted and/or had formed extra uterine cavities.In addition, two of the twelve had severe cervical stenosis or cervical scarring from the ablation. This is caused by operator misuse (OOPSIE) - when they accidentally ablate the cervical canal. I think this is the reason for my problems and the reason why my doctor didn't have an explanation. He had originally told me that on my ultrasound my uterus had an unusual shape (like a long, skinny heart). I thought it was strange because nobody had ever caught it before and I've had three kids and many ultrasounds! I believe the reason they never caught it was because it NEVER EXISTED before the ablation. It was caused by it. Only my opinion after all this research, but everyone should know that the possibilities exist. Morale of the story - get checkups after an ablation, faithfully. I didn't (my bad) and am paying the price. Most ablations go well, but very few studies are available on the long term effects. Thanks for letting me share!
Birdbath, I also delayed going to my doctor when I first started feeling sick. I am such a terrible procrastinator when it comes to my health. And that 98%...I was told that, but I am beginning to wonder just how accurate that statistic is. Food for thought...
I've had two of them. The first was effective for about 13 months or so. Just had the second one last week. Like Mickey asked, what method did you have before? The hyrothermablations they do nowadays have a kind of no way they can scew up fail safe system on it. Every second of the procedure is controlled by a computer and the machinery. Water injected through a sheath inserted through the dialation tubing, body temperature pretty quickly raised to about 90C, left for ten minutes, the water then cooled back to body temperature before it's removed completely, every drop accounted for and alarms going off if more than 10cc is not accounted for. Very quick, very easy, and safe. There were lots of problems with endometrial ablation before they came up with the thermablations and baloon ablations. The only real question I have concerning them is how in the heck they figured out they could put water, just below the boiling point, into a live woman's uterus and it wouldn't hurt. . . or cause shock.
I'm really sorry you had a bad experience. I know for me, it has been a real effective alternative to hysterectomy. Even if I eventually end up with one, right now, I'm not medically fit to undergo another open abdominal surgery after the colon resection in September. I'm also not fit enough to keep bleeding and bleeding for days on end. This is buying me some time, and maybe enough time that I'll reach menopause and most of my problems solved. One can hope anyway. And if not, down the line I'll be strong enough to go through another abdominal surgery should the need arise.
Again, it's a shame you're having such problems and hope a solution is found for you. Love, hugs and God bless, Barb
Thanks for responding. I believe mine was called Diathermy, but I'm going to verify that at my doctor's appointment. If I had to do it all over again, knowing what I know now, I would have still chosen the ablation. The only other option available to me at the time was a hysterectomy, so if nothing else, it postponed having one. There are much safer methods now, no doubt, but there can still be complications. All that being said, it is a viable alternative to more radical surgery. It's important for women who have had them to be followed up on, just in case a late complication comes up. It's my own fault for not going to check-ups, I felt good until about eight months ago. Just kept stalling going to the doctor........
I would recommend having an ablation - just get regular checkups! I believe that the no-complication rate is around 98%, guess someone has to be in the unlucky 2%! Cervical stenosis can lead to alot of problems, most of which are avoidable if a woman gets regular check-ups. I don't know if my ablation caused these problems for me, but I can tell you that before the procedure my cervix was fine. It's also more difficult for doctors to diagnose endometrial cancer in a woman who's had an ablation, the cells are altered and the cancer can be masked. I've learned so much from everyone on here and by doing some research (on legitimate sites only - there's a lot of garbage on the net, too!). I care for everyone on this site so much, and just want to make sure that everyone is aware of some of these complications. Stay in tune with your body and your doctor! If nothing else, I hope women learn from me what NOT to do! Yikes, what a way to be remembered :)
I had an endometrial ablation in Aug. 04 and initially things went well. I didn't have any bleeding and when it started months later, it was very minimal. Then I would have a couple of low bleeding months, followed by a 7-8 day, full blown period. My cramps started coming back and my abdomen sarted to become a bit swollen. Some months I would feel so sick that I would vomit, along with alternating diarhea (diarrhea) and constipation. I have felt like this for about 4-5 months, so I would say my ablation was good for a little over a year. Because things are not getting any better, and due to a complex cyst on one ovary and fluid in the opposite fallopian tube, I will be having a hysterectomy on 4/18. I would not be surprised to see a connection with all of this. I think we might see tubal ligations fall into this theory one day, too. We try to make the right decisions about our bodies (the least intrusive with the least amount removed), but ultimately, I feel like the more we disturb nature, the more nature fights back, but does that mean we should suffer and take our chances...I, for one, don't think so. These are all hard choices for each of us, and everyone will have a slightly different experience, but at least we know we have somewhere to go where we'll be understood.
Birdbath, this article you reference you are bringing to the doctor; can it be accessed via the internet? I'd really like to see it. There just has to be a connection between all these things. I never in my life had any menstral problems until my tubal in 1991, and it's just gradually gotten worse.
Very interesting. So many people cannot have the same complaints and it be coincidental.
Thanks for the info. I will definitely do some "googling" on this subject. First Moosie and I made the connection, and now you have brought up many of the same things we were questioning...sounds like the beginning of a revolution!! Seriously, though, we need to continue to post for each other since this is becoming more and more relevant.
These were really interesting posts for me. I had, yes, The Tubal ten years back, and never felt 100% right after that. Have been suffering with heavy bleeding etc. getting progressively worse over the years. Ended up with the total hyster because of ovarian cysts, but sure wonder if it all could have been handled differently and if there is a link. I have read that if you have a history of cysts, you should NOT get a tubal. I had them in the past.
Thanks for the info, Ladies.
I am just shaking my head as you are talking about the tubes. Do you know that the reason I am getting my right tube out is because there is "fluid" backed up in it. I don't think it is a coincidence that 2 years after my tubal, I am having a problem where there was never one before. Simply amazing!
As for my hysterectomy, everything is coming out unless the ovaries look good enough to keep. Ironically the one with the complex cyst probably has a better chance. Doc is not sure what he will find as far as endometriosis. Something interesting about my ovaries...normally ovaries sit one to the left of the uterus and one to the right. Then many times after a hysterectomy, they gravitate towards each other. Well mine couldn't live without each other. They are practically touching, so makes me wonder if there is some endometriosis lurking. Doc will try to do lap assisted vag. hyster., but he said there is always the possibility of having to make an incision. I am just anxoius to be over it! (I am sure you can relate)
I will continue to follow your posts, as I am very interested to see how everything works out for you and I.
Thanks for sharing. Guess we're in the same boat! It's interesting to me that you mentioned the tubal problem. Some of the articles I read on late term effects mentioned the tubes becoming infected or backed up with blood. After an ablation, the endometrial lining tries to grow back (and in many cases does). The tissue that usually grows back is located near the fallopian tube entrance and can lead to bleeding backing up into the tubes. Some of the reports showed that independent, round cavities with regrown tissue had formed inside the uterus. These cavities can bleed, but because the cavity is sealed all around, the blood can't get out. It sure makes a person wonder, doesn't it? I'm a little skeptical about the 98% also - I'm betting that in another twenty years the statistic will have changed. Ablations haven't been around that long - so I guess we're a part of the new statistics that will come out eventually! Do you think that our complex cysts are related? I do, maybe they're from an infection or general inflammation of the area. I'm taking my article to the doctors office on Monday. I'm not looking to put blame on anyone, just want to make sure that good care is given at this point and ALL possibilities are looked at. Oh, glad I'm not the only procrastinator around! I just got remarried in October, so was busy making plans, etc. Time flew by and then my husband started bugging me to go get checked out. Now, here I am, cysts, cervical stenosis and all. Poor guy, he's trying to deal with all of this, too. Do you mind me asking if you are you going to have a total or partial hysterectomy? Laparoscopy? Laparotomy? I'm sorry you're going through all this too.
This is too weird. When I read your previous posts, my next question to you two was if you had your tubes tied or not. There is medical documentation concerning this problem after an ablation! There is actually a name for it - doctors refer to it as "post ablation tubal sterilization syndrome" or "post ligation post ablation syndrome". If you type those in at "Google", you will get numerous results. Some of the articles are written for doctors by the makers of the ablation equipment. They point out to the doctors that if a woman has had tubal ligation and then ablation, to be on the look out for potential tubal problems down the road. The blood can back up from the cornual areas of the uterus into the fallopian tubes. This can lead to mild to severe pain in the abdomen, fluid and/or blood blockage in the tube causing severe tubal swelling.
Several of the articles say this is a late rare complication, other articles cite doctors who are opposed to ablation for various reasons, including this one. I wonder how truly rare it is. These doctors wonder where the blood goes when endometrial tissue reforms near the fallopian tubes (when tissue does reform after an ablation, it is usually in this area of the uterus). I have not had tubal ligation, but I do have regrowth of the uterine tissue near the tubes and now have three cysts on my ovaries. These articles, some from the Oxford Journals, discuss the additional discovery of the uterus "folding in on itself" from being so thin. The top part kind of bends down - part way or most of the way. The result is a skinny "heart shaped uterus", like the one they saw on my ultrasound. Again, no doctor has said that my problems are from the ablation. It is rather hard to believe, though, that it isn't. It remains the only thing I can find anywhere that explains my problems. You may want to ask your doctor about it, it can't hurt. Again, I'm not trying to scare anyone or dissuade someone from an ablation, but these complications are real and probably more common than reported. I, too will follow both of your posts closely. I see my doctor (actually a different doctor in the same office as mine will be out of town) on Monday. I'm going to grill him to death about all of this and I will post his responses on this forum for you. It's funny, but my regular doctor (the one who will be out of town) has asked me several times who performed my ablation. I keep reminding him - "YOU did". My doctor says he has no idea why I'm having these problems, he's never seen it or heard of it. But, if I can find this information from medical journals, why can't he? Either he isn't up to date OR he doesn't want to tell me OR he's just patting me on the head. Either one of those options are unacceptable to me. That's why I'm seeing two different doctors next week. I need someone who will discuss this with me rationally and give honest answers. How good can long term data be on ablations? They haven't been around very long and it's not like they're going to go around cutting open women who have had ablations years back to find out what has happened inside. These reports all come from women who HAD To have a hysterectomy and then they were able to see into the uterus, ovaries, tubes, etc. What about all of the women who may suffer silently or decide to just live with their symptoms? They are counted as the 98% who don't need a hysterectomy or other intervention after an ablation. It really does make you wonder what's happening inside of us. I intend to find out, or at least try. Both of you are in my thoughts and my prayers.
HEllo.I had abalation 1 1/2 years ago and have done well until Jan-March.. Started with mild cramps that progressed to severe. In february I went to GYN and they attempted a "endometrial biopsy" couldnt get through the cervix, but since this is not very common they sent me home and said lets see if it gets better. Also did pelvic U/S. MArch 14 to ER with severe lower abd. pain and low back pain.(almost thought I had a kidney stone) CT of pelvis showed fluid in the uterus and enlargement of uterus.(so much so that the radiologist thought I was pregnant)NOT!!ER sent me home and told me follow up with GYN.I got the medical runaround. still in pain... March 16 to GYN at 3pm. He got results of CT and said. I have severe scarring of cervix and uterus from abation and that the fluid in my uterus has no where to go. that explains the "back labor" and cramping. sent me straight to hospital for emergency D&C to try to open cervix. When he did the surgery he said the scarring was so extensive that he had to do an emergency hysterectomy due to hemmorhage. I was bleeding internally. Went for 2 week follow up yesterday..FEEL 100% better!!!!!!!!!Very experienced GYN said"I have read about this in books but had never seen it"..I am also one of the unlucky 2%..:):):)
I had a balloon ablation 9 months ago. Immediately after, I had bladder and vaginal pain and bladder infections. Also, I had pain in this area in response to many foods, foods which I had always eaten without problems before. I have inflammation and pain after intercourse. My symptoms mimic those of vulvydnia and interstitial cystitis. I went to a Urogynegologist and am now undergoing pelvic floor physical therapy. Also, I noted that on a CT abdominal scan which I had soon after the ablation there was a note of fluid in the endometrial canal. I wonder if this could be causing the problem with the bladder. Has anyone else had these type of symptoms after the endometrial ablation.
Amazing! Was just googling info- Had tubal in Dec. 03 after birth of my 2nd son. No one warned me - I have a history of cysts, had 2 surgically removed and 1 ruptured. Had ablation 14 months ago. No cramps since, very minor bleeding. Experiencing severe pain today. I honestly thought I might be having a tubal pregnancy. Have been having severe bruising around c-section scar for several months. Today, unbearable pain, irregular spotting. I have not been to my ob since just after my ablation. Thanks for the info.
Oh man, am I glad I googled and found this sight. Right now, I'm crying and waiting on the doc to call back. I am so sick of bleeding that I was ready to do anything! Right now I'm on progesterone but I can't take regular birthcontrol pills due to major side effects so I'm wondering why the doc thinks regular progesterone won't cause problems. Does anyone have a clue? By the way I have had 3 c-sections and the last one was in June 06. I had a tubal sterilization and never stopped bleeding from the birth. The longest I have went was 10 days with no spotting. It was fairly light but now it's turned real heavy. The ultrasounds have all turned out clear except a quarter size cyst on one ovary. I want something done now but the doc keeps saying it's hormonal and wants to do a IUD. I'm not comfortable with one and I don't know where to go from here. Should I check a new doc?
I had a Novsure ablation in June 2007 havent been without severe pain since around my period it starts around 7 days before my period went to OBGYN seem not to be worry about it finally went to ER did ultrasound
found out that i had a endometrial hematoma and a fluid pocket told my obgyn he just recommend a hysterectomy did not recommend no other solution i had 4c-section i had read on the contradictions that it wasnt recommended for women who had c-section i also had a tubaligation with my last c-section i had went and got a second opinion he told me about the post ablation syndrome i thought i was the only one with this problem . couldnt find no other solution i dont want to have a hysterectomy.but i cant take the pain no longer.they feel like labor pains need help fast.
I had my ablation done on 3/25/08. I felt great afterwards until last Saturday I started cramping. It appears as though this pain would become more severe with activity. Even going for a short walk, I would get severe cramps, start to bleed and had a sudden urge to urinate. I have been on the web looking for answers but have not found much. When I went back to the GYN he told that I either had a infection, i do have a low grade fever or that uterus is bruised. I cant seem to find much on bruised uterus. The GYN did tell me if the uterus is bruised that a hysteretomy must be done.
Have you heard or found anything on a bruised uterus?
I have just received a notice that my appointment at the Women Health Centre is on Monday May 26 to have a NovaSure endometrial ablation done. Having a few reservations I checked out NovaSure web page. Found the manual on the equipment used for the procedure. In the manual they give warnings on post ablation tubal sterlization syndrome and contraindications listed cesarean sections. I have had both. Now after reading the postings in here, I wonder should I just cancel my appointment and have the heavy periods till mother nature says I have had enough, which should not be to long since I am 51. I will definitely contact the doctors office to ask some questions.
Hope everyone who has postings in here are healthy and well.
I understand your concern, I too, have had a tubal sterlization after years of pain and bleeding to the point of severe anemia. Today my doctor suggested a NovaSure endometrial ablation. I, like you, have been reading the posts and now am very concerned. If there is anyone out there who has had this specific procedure done I would greatly appreciate hearing about their experience. By the way Debbie, I too am going to a facility called the Women's Health Center. I am curious as to if by freak chance, it is the same facility. In Ohio????
Today, I was discharged from the hospital having been admitted 2 days ago via the ER. Fever, back pain, & severe abdominal pain brought me to my general practitioner who then called the ambulance to take me to the ER. Once at the ER, & after CT's, Xray, Pelvic U/S, blood work, one female gynecologist knew immediately what my problem was (the male gynecologist & male surgeon kept tossing me back and forth saying it wasn't within their specialty). After hysteroscopy and D&C I felt a bit better. I'm still on narcotics for pain and will f/u with the female gyn in 2 weeks with a pelvic U/S. She tells me that my Novasure was performed incorrectly and that the ablation should not have taken place below the uterine isthmus otherwise this can cause the cervical canal to scar shut with the resulting back up of fluid and tissue into the tubes. Also familiar with what has been written by other guests is that I have just "acquired" a bicornuate uterus? I have also had children and previous pelvic U/S, CT's, and this has never been commented on or mentioned by any physician. I don't recall consenting to possible uterine distortion among these other later complications. I recall only the possible --during procedure complications being cited to me. My advice for anyone proceeding to Novasure is to have a real conversation with the GYN about their technique and discuss the information posted here.
My Dr. tried the NovaSure ablation but he could not do it because I had a thin spot in my uterus. He could only do the dnc. But now 3 weeks later he is going to try the water ablation. Has anyone had to do this. Any help would be greatly appreciated.
I want all women to be aware of the long term potential if you have a tubal ligation and later, have a uterine abltion performed...please read on for my abreviated history:
...I had a tubal ligation in my mid 20's. At the age of 38 (after years of bleeding) but heavier in the 2 years prior to my 38th year. I went in and had a uterine ablation (the balloon method was used). When I woke, I was in phenomenal pain and within the month, I was back in for a uterine infection (family doc did a pap and confirmed). This was treated with antibiotics and all seemed ok. Within the last two years (almost to the day) I have been back in the hospital for incredible lower abdomen pain MANY times. Numerous ultrasounds have shown different things including the radiologist asking if I could be pregnant due to the viewing of 2 fluid filled sacs on either side of the uterus. Not possible!! Pain was also blamed on cystic ovaries (which I have always had) and never had this pain before. Gynocologist does not want to listen, has refused to accept the information I have found (am going for a second opinion as the gyno has now booked me for a laparoscopy and hysterscopy AND a D&C)...makes no sense for the D&C!!! In my research, there is a condition called PATSS.....Post Ablation Tubal Sterilization Syndrome.....severe debilitating pain....be tenacious ladies....don't take only one opinion....research and tell of your own experiences.
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