Failed Ablation Create Uterus Disaster

Failed ablation has created severe scar tissue inside of uterus. Dr. now recommends TAH. Can anyone tell me what risks I’m facing if I choose to live with irregular periods and not have TAH?

Tammie

Hi Tammie,

First of all, I'm very sorry to hear that the ablation did not work for you. I'm sure it is discouraging.

You indicate that you have "irregular periods" and that you have severe scar tissue inside your uterus. What other symptoms do you have besides the irregular periods? Are you in pain? What has your gyn indicated the risks are if you don't have the TAH?

Most of the posts I've read here from ladies who had ablations that failed indicate that they eventually chose to have a hyst. This is not to say that a hyst is the only or even the best option ... I just can't recall reading anything about possible risks if you do nothing.

I highly recommend that you get a second opinion from another gyn and be sure to ask about the possible risks of doing nothing.

If you aren't in a lot of pain and the risks of doing nothing are low, perhaps you can get by until menopause (are you close to menopause now?)

I'm sure this is very frustrating and discouraging for you. Sending hugs your way.

Beth

Beth, Thanks for the reply. Sorry I was so broad in my post. Here is some back ground:

I am 35 and for the past several years have had very heavy menstrual periods, would soak through a super plus tampon in 30 minutes first 3 to 4 days of cycle. The only good thing I could say was that my cycle was very regular and only lasted 6 to 7 days. In March 2002 at my yearly check-up my gynecologist recommended an ablation. After a few weeks of researching the ablation I decided to have it done. In order to prepare for the ablation I had to have 3 shots a Lupron, once a month for 3 months, talk about hormone city, I was a total mess. Finally, in August I went in for the ablation. Everything went great and I was back to normal in 3 days. 28 days post ablation I had a full blown period, just a heavy as before. I called doctor and he told me that I had to wait an entire 6 months before he could make a determination regarding the success of the procedure. So I waited and continued to have a period whenever it felt like coming and lasting for however long it felt like staying, usually 10 to 14 days. At my 6 month check up doctor finally stated that procedure was not successful, I could have told him that 28 days post-op. So last week I went in to have a second ablation, only to wake up in the recovery room to be told that he was unable to perform the second ablation due to severe scar tissue inside of my uterus as a result of the first ablation. While I was in recovery he stated that the next step was a TAH. He also stated that my uterus was enlarged and retroverted.

After reading other posts on this site, I have realized that the pain and cramping that I have on a daily basis as well as some of the other symptoms that I have are not normal. I think that I have felt this way for so long that I didn’t even realize that things were not right. This is all so new to me and when I go visit the Dr. to discuss all of this I just want to be as informed as possible. I have many questions that I need for him to answer before I make a decision.

Tammie

Hi Tammie,

Thanks for filling us in on a little more about your background. I'm glad you are thinking about all the questions you want to ask your doc. It's a good idea to write those down and take them with you so you don't forget what you want to ask.

It took me a long time to realize that my symptoms weren't "normal" either. It's pretty amazing what some of us women put up with, thinking this is just how things are .... only to find out later that this is NOT just how things are for women.

Keep reading and posting and we'll do our best to provide support. Let us know how things go at your next dr. appointment.

Beth

I had the rollerball ablation done 4-23-2003. I am scheduled for a TAH on8-13-2003. The ablation failed but we kind of figured it would but I had to have it done do to insurance. I had to go through 7 different meds and that predure before I could have the hysterectomy.

I have bad scare tissue from a emergency c-section from 15 years. The pain, heavy periods (15-20 days) and hormones out of control is enough to make me crazy. I have done all I can do and I am going to please once it all ends.

My doctor told me this will be the best thing I can do for my body. The heavy bleeding is tiring me out. No matter what we try it is only a temp. fix.

What you are all describing could be due to adenomyosis, which is where the endometrial lining actually infiltrates the muscular wall of the uterus. It leads to that "flooding" and extreme pain that so many of us are all too familiar with.

Adeno is very difficult to diagnose until the pathologist actually has the tissue to examine...it can exist on a cellular level and be impossible to "see" with any of our imaging methods. And the only "cure" for it is in fact hysterectomy ...ablation is not effective in adeno.

I am repeatedly astonished at insurers "requiring" women to take hormonal therapy and go through repeated procedures just to "prove" that they need a hysterectomy. All right, there are statistics that might suggest that hysterectomy is "over-performed". But for a woman with adeno, and constant bleeding, to require all these hoops just to "prove the point" seems cruel, inhumane, and not particularly cost-effective -- especially when the doctor and patient realize themselves that all these procedures aren't going to help.

The ablations are effective in certain conditions, like endometrial hyperplasia (or overgrowth of the lining WITHOUT infiltration of the wall). But the more procedures a woman goes through, the higher her chances of developing adeno...a true "Catch-22".

Tammy, you are wise to research your options, and you might also want to consider a second opinion. Also, are you anemic? It's very difficult to feel "good" when your counts are low, as they often are in the sort of bleeding you describe. I agree with you, we tend to drift along with these symptoms, trying to get through our normal lives, and figuring that all this is just "normal" -- for us. I remember all too well crying in severe pain as a teen, only to be told that "it's not that bad" and "it's normal to have some cramps". It's NOT normal to soak through your protection that quickly, nor is it normal to be doubled over in sweaty pain for days and weeks out of the month.

This is a great site to research your concerns and come to a decision. Some insurers do require a second opinion, but that's a great idea anyway, especially if adhesions are a concern.

Take care...I didn't have the luxury of "choice" as my situation looked for all the world like cancer. But even without the giant cyst that I had, I was probably heading in the direction of a hyst anyway. I didn't know about adeno then...if I had, I probably would have been in with the symptoms at least a year earlier. But no doctor ever asked about the length or quantity of my periods, and although they had changed in the previous 6-7 years, I thought of those as "normal" and consistent with peri-menopause.

Hope you find the answers that you need, both here and from your doctor...and let us know how it all goes, OK?



Audrey

Hi everyone,
I am new to this message board - found it accidentally. I think of it as fate jumping in to help me out. I had an ablation just a week ago, July 24. Actually, I had two surgeries for the price of one - they had to go back in to stitch up a couple lacerations on my cervix (I am still trying to figure out which instrument caused them). I am glad and very appreciative of my nurses' care. They alerted the doctor of the excessive bleeding I had in recovery, hence my second trip into the OR.

Anyway, I am curious about internal scar tissue as it is something my doctor and I did not discuss prior to the ablation. I have a post-op appointment next Monday thus will have the opportunity to ask my doc some questions. Is it common that scar tissue is problematic? Are there more issues that could arise as I recover?

Also, is adenomyosis the same as, a contributing factor of or a precursor to endometrial adenocarcinoma? My sister has this type of cancer and part of the reason for my ablation was to possibly avoid the same fate.

cj:

First of all, to Hystersisters!

I'm sorry about your sister, and I'd like to invite her to join our Cancer Concerns forum, where there is a lot of information, support, and a wonderful intelligent community of women who are travelling down this particular path.

It sounds like your sister was younger than "usual" for this diagnosis? We have a few who have been through that path over there. I hope she was caught early, and is doing well.

To answer your question: adenomyosis is not a malignancy. Its closest "relative" would be endometriosis, as it seems to be a similar mechanism...endometrial tissue that "migrates" where it doesn't belong (i.e., the intrauterine muscle) and proliferates there, causing bleeding. It seems to be more common among those women who have had some sort of "procedure", like D & C, c-section, etc.

I can't really answer your question about endometrial cancer. There have been one or two studies that suggest that women with endo have a higher incidence of their abnormal endo tissue "converting" to cancer, but it doesn't sound like your situation. You say that " part of the reason for my ablation was to possibly avoid the same fate.". Was the rest of your procedure to attempt an improvement on excess bleeding? And, I'm assuming they did a biopsy?

As you can see, there's always as many questions as there are answers But we have a very sophisticated search engine here, and a lot of us do a lot of research on our own. So with a little sleuthing, you should be able to find the information you're seeking.

As far as the aftermath of ablation, it's hard to answer your question, in part b/c I never had one, and in part b/c so many are here following ablations that were either unsuccessful or that didn't "last". There are probably many out there for whom the ablation was the final mode of treatment that they needed, and of course, they wouldn't necessarily be visiting.

If your sister has internet access, please encourage her to come pay us a visit, too. It's an awesome community, and so often women with GYN cancers feel alone. Good luck to you, too, with your questions and your doctor's visit next week. I would write down the questions that you have, and perhaps bring another person with you to that appointment. I often find that I don't remember everything that my doctor has said...but between my partner and I, we usually get most of our questions asked and answered.

, with an extra for your sister...

Audrey

My sister is 40. I am 35. I will mention the forum to her though she is generally too weak to correspond. She is not doing well, I'm afraid. She has undergone several different chemo regimens since diagnosis a year ago. Just recently, we got "the call" and all scrambled out to New York because the docs said she wouldn't survive the week. She did survive the week and the next 3 weeks in the hospital. What is odd about her cancer is that it is endometrial but the doctors couldn't find evidence of origin within or near the uterus. Even so, she underwent a total hysterectomy. The tumor itself was attached to her intestine and has since matasticized. It is in the abdominal wall. What is also odd was she was asymptomatic. She had no previous gynological problems. They found it because of some abnormal abdominal pain and swelling 2 months after she gave birth to her daughter. Ultrasounds and other tests revealed nothing. A PT scan indicated an abcess on her intestine and it still wasn't until they operated that they figured out what it was. At this point, my sister would like to try more chemo but the doctors haven't given the go ahead on that because the last round nearly killed her.

I had the (rollerball) ablation because of heavy periods. Subsequently, as I thought about it, I figured if the uterine lining wasn't there to begin with maybe an added bonus would be protection from endometriosis. The doctor said there were no fibroids, polyps or lesions in my uterus so that was good.

My sister encouraged me to get a PT scan done and it is something I plan to bring up again with my doctor.