A WARNING RE: ENDOMETRIAL ABLATION

Rondabunny2 · 02-20-2003, 06:51 AM

Basically, this is a warning to ALL women w/ PCOS who are offered the option of an endometrial ablation. Do NOT do it!!! It is contradicted in women w/ PCOS & can mask sx's of endometrial cancer which we are at a much higher risk of contracting.

I was curious about others experiences, so I did a search on endometrial ablation & found NOTHING here at SoulCysters. For those of you who don't know...endometrial ablation is when the uterine lining is destroyed in the *hope* that periods will either lessen or stop completely. {it is NOT a sure thing by any means} Obviously, you have to be willing to give up your fertility as well since w/o a lining you cannot support a pregnancy. There are a few different types of ablations...I was to have one called "Novasure" where they use a laser to burn out the lining of the uterus.

Here's what happened, I only recently {since november} have had problems w/ prolonged bleeding...bleeding between a week & 10 days {normal for me} every 2 or 3 weeks {*not* normal for me!!}

On Jan 9, I started my period & have not yet stopped (42 days now..sheesh, this flood is lasting longer than NOAH's

!!!)

Prior to November, my periods have *always* been extremely unpredictable ranging from every 6 weeks to 3 or 4 months sometimes as long as 6 months without a period...as you all know, this is all a part of having PCOS.....

I WAS scheduled for a D & C, biopsy, & Novasure ablation February 11.

Well, after searching online, I had serious concerns & 4 days before the scheduled ablation, I spoke to my GYN about those concerns {i.e. the risk of an endometrial ablation Masking cancer sx in the future because PCOS puts me at high risk for endo cancer}
He completely poo-pooed the idea even though I read about contradictions w/ PCOS & ablations at reputable websites.

He said there was no way possible for me to ever get endo cancer because the entire lining of the uterus is destroyed in ablation, thus eliminating periods & all future risk of endo cancer. I told him I just wasn't confident.....he said, "Your only other option is a hysterectomy." {this is an *unbelievable* statement considering ALL of the following:

A) I am 31 yrs old

B) This is all fairly recent {prolonged bleeding just started 3 months ago}

C) He never tried to treat me w/ hormones

D) I did not have a biopsy OR an ultrasound or ANY diagnostics for that matter...have not even had a pap smear in 3 years

I researched further & found that my GYN either doesn't know the facts or straight up lied to me when he said endo cancer is not possible following an ablation. I found *MANY* medical abstracts at Pub Med & the Journal of American Obstetrics & Gynecology that state otherwise! The lining is capable of regenerating so cancer CAN grow...not to mention the fact that it is very hard to destroy ALL the lining in the first place.

I know that since I am in a high risk group that a biopsy should be done because the mean age of dx of endometrial cancer in women w/ PCOS is age 32 {I am 31}. I am not afraid that I have cancer....I just want to be *absolutely sure* I don't since the only sx is excessive/prolonged bleeding! You know?

Anyway, I called my GYN back & told him I just am not comfortable going through w/ the ablation at this time. I told him I wanted to do the D & C and biopsy only. He said NO WAY. It is a "package deal"...all or nothing! Said he was looking out for my well-being!!!!

More like he was looking out for his pocketbook!

I told him to forget it...cancel the entire surgery then. I am going for a 2nd opinion March 4 to a new GYN recommended to me by my urologist.

In the meantime, my urologist ordered an ultrasound which shows a very thick uterine lining {amazing after so many days of bleeding!}, & "multiple echogenic foci likely representing dystrophic calcification" which is *very* weird since there is no mention of fibroids!

& even a little scared.

Anyway, the whole point of this post is to warn women w/ PCOS about the *serious* dangers of endometrial ablation. Since the procedure has the potential to stop all bleeding it has the potential to hide the *only* early sx of endometrial cancer {abnormal bleeding}. PLEASE if you have PCOS think long & hard before having a procedure like this done. Get a 2nd, 3rd, even 4th opinion...whatever it takes to take care of YOU!

Thanks for listening,
Ronda

DavisSR · 02-20-2003, 10:45 AM

Thank you Ronda, that was some wonderful information you shared. Good luck at your new doctor. I didn't like the sound of the other doctor, it seems to me that he was looking out for his pocket book.

alexandriaangle · 02-20-2003, 03:16 PM

Thanks Bunny - you hit the nail on the head. Thou, if I may I would like to add a little bit more. It was also suggested to me that I have a D&C and ablation for my heavy periods. Well thankfully from the time I scheduled the actual procedure to the date of it, I was admitted into the ER for an emergency D&C and due to the fact that I was a pretty sick puppy, they didn't do the ablation. The thankful part is that I agreeded to have the procedure done on blind faith of the Dr. who suggessted it and was able to research it before my follow up visit. What women need to know, not only that it can mask early cancer warnings like you mention it can not be done on women with fibroids or with enlarged uterus (which I was told I had after the D&C) - it is also contraindicated for women who have had C-Sections because it can ruture the uterus (due to weakening of the uterus by the incision in to the uterus). Women must also be on a very reliable form of BC after since if even if the smallest patch of tissue gets left, an egg can implant - if this happens the placenta will grow and attach itself to the uterus wall and if you carry to term will certainly have to have a historectomy since you are not able to shed the placenta. I read a post from a women who's dr. told her she didn't need to worry about BC any more - WRONG!!!!!!! The Dr. who recommended it did not say anything about BC and was fully aware I was not using any - lucky the Dr. at the follow up visit when we talked about doing it agian highly recommended a tubal. Read up on any procedure and/or tests you may have to undergo.

Pattyannruss · 02-20-2003, 04:26 PM

I see you have done your home work.

Did you also research endometreosis and fibroid tumors?

Many who have prolonged bleeding suffer from the fibroid tumors.

Keep looking.

I can't say I'm surprised that that DR tried to do this to you.
But I am so happy you took the time to research for yourself.

This is the ONLY reason I have gotten my DX.
I took control and push all the tests through to get where I am now.

By the way I have endometreosis. Not a fun ride.

If anyone needs links let me know.

Patty

Rondabunny2 · 02-21-2003, 03:28 AM

Thank you for your replys Sherri, Alexandria & Patty.

Sherri, you are welcome for the information. Yes, the doctor was obviously looking out for #1 {himself}.

Alexandria, I too was ready to have the procedure on blind faith in my doctor! Fortunately for me, surgery was delayed for several weeks after my original appt. or I am certain I would've gone through w/ it! I barely started looking into the implications out of curiousity just days before it was to take place! Thank goodness we both were able to educate ourselves sooner rather than later!

I had no idea it was also contradicted in women who have had prior c-sections {I have not had one myself}. I did learn that it is less effective in women w/ fibroids, but was not aware of an enlarged uterus being a contradiction as well. {my uterus is slightly enlarged}.

And yes, BC is extremely important after endometrial ablation for the very reasons you mentioned.

Patty, my urologist ordered a pelvic & vaginal ultrasound which was done 11 days ago & did not show any fibroids or endo. Sorry to hear you have endometriosis. I do not have painful periods so I doubt it's endo in my case. I am wondering about fibroids though, because "multiple echogenic foci likely representing dystrophic calcification" was noted on the ultrasound report, BUT no mention of fibroids at all! Strange!!!

Take care ladies,
Ronda

kelseybean · 02-22-2003, 11:11 PM

Thank goodness you found all that information and stood up for yourself rather than listen to the doctor. I hope you find a much better OB! I was reading all that information with my jaw hitting the floor because it is exactly what I went through from September until a D&C/hysteroscopy (to remove growths) in January. Never once did my OB mention the endometrial ablation. I told her about my family's history of cancer (such as uterine) and I was quite frightened that it could be a possibility.

Hang in there!