Endometrial Ablation 10 Weeks - Still Bleeding Every Day

3/21/13. Just for reference, I'm 48 with 2 kids and have never had any health problems of any kind. 71 days ago, I had a fibroid resection by hysteroscopy followed by a Novasure balloon ablation - and haven't had a single day without either spotting or bleeding since. I'm very upset - and am wondering if there are others out there like me? I'd love to hear what kind of followup information you've gotten.

I'll try not to write a novel (knowing me, it'll be close), but here's how it all went down: in December my doc ordered an ultrasound to look into why my periods had gotten heavier over the past couple of years. I didn't bleed for very long (4 days exactly every 28 days) but I bled a lot and it was getting to be sort of worrisome, not to mention inconvenient, and while I was only borderline anemic, I was often tired and got out of breath easily. The ultrasound showed a small, submucosal fibroid (only about 2cm) so my doc referred me to a Seattle hot-shot gynecological oncologist to remove it. Because I have always taken a conservative approach to my healthcare, I asked my doc if I really needed to remove this thing and she proceeded to terrify me with a story about one of her patients whose fibroid had prolapsed and she'd begun to hemorrhage and ended up in the ER, after having nearly bled to death (she'd told me the same sort of horror story when I wanted to try a vbac after my first c-section - needless to say, I went ahead with the second c-section - AND the fibroid removal).

So I went to see this hot-shot. After he explained in detail what he'd be doing to get rid of the fibroid - going in vaginally to re-section with a metal scraper thingy then using a roller-ball to cauterize the site AND my entire uterus, I realized he was describing a second procedure as well... an endometrial ablation. I didn't actually understand this until I was sitting in his "library" (don't all hot-shot docs have Libraries?) waiting for my pre-op instructions from the nurse. I saw those two words: endometrial ablation on the consent form and realized that was the procedure my doc had been trying to get me to do for a couple of years and I'd always declined (in her office, they use the Her Option procedure so I'd not known it by any other name. I'd said no several times over the years. My period's not THAT bad. Like I said, I take a conservative approach. So anyway, here I am realizing the hot-shot (who actually specializes in female cancers, not necessarily fibroid removal and endometrial ablations) has tacked on something I didn't want done, without asking me, without explaining to me, without giving me any literature about it nor briefing me on possible risks or complications.  So I called him back into the Library and asked point blank: "Is this something that needs to be done?" and his response: "Well yes, see, we want to go in there and do this now so we don't have to go back in in two years"... Now, I took that to mean this rollerball procedure was necessary for the successful removal of the fibroid and would prevent others from forming in the 4 or so years I have until menopause. So, once again, I fell in line with blind faith and went ahead and let them schedule me for surgery.

The fear was the worst part of the procedure. I'm not that comfortable with hospitals and even the idea of general anesthesia makes me sweat (I'd never been all the way out before) - but all seemed to have gone well because I woke with essentially no pain and no bleeding and laid low for a few days (which I never let myself do so that was a luxury). The only complaint I had at that time was that while I was coming back out of the anesthesia, hot-shot went out to the lobby and told my waiting husband that I was to be on pelvic rest for 4 weeks (news to me) which meant no sex (fine - hey, my husband and I have been married for 18 years, what's 4 weeks?) but also, no riding my horse (not so fine). He'd never mentioned that I'd be grounded from the saddle - my horse and I are in training. It's kind of a big deal to suddenly stop what we've been working toward for a month. I was upset - why the hell didn't he me this BEFORE the surgery (we discussed my equestrian pursuits during the consultation appointment)? But oh well - I scraped together the pennies to pay my trainer to ride my horse while I recovered.

But it was on the 5th day that I began to feel I'd been hoodwinked.

It was an easy day at the barn - no riding, just grooming, bending over to pick hooves and lifting the blanket up to slide it on and off my horse - when I suddenly felt a GUSH. When I checked, I found that I'd just bled about 2 tablespoons worth of pink/red blood. Because I'd been given nothing to read, no handouts, no followup literature or online links to help me know what to expect post-procedure, I called the office to ask if this was normal. The assistant who answered (she was apparently brand new there) decided it was probably that my "sutures" from the fibroid removal had dissolved and sometimes there's a gush of blood after that happens. Not to worry unless I started flooding a pad in the space of an hour. I was only spotting by that time, so I tried not to worry. But from that point on, I started doing my own research and was HORRIFIED to discover SO MANY negative after-effects of this procedure! I felt like kicking myself for not digging deeper beforehand - and mostly, for being so careless with my own body that I put it wholly and completely in someone else's hands, hot-shot or no.

During this research, I discovered that an ablation has absolutely nothing whatsoever to do with whether or not a fibroid removal is successful. And it certainly doesn't prevent the recurrence of fibroids. I hadn't needed to have this done. I'd gone into this whole thing completely uninformed. I actually wrote hot-shot a letter outlining my dismay at the lack of information I was provided prior to this surgery. I was upset and I let him know it. I let my doc know it, too. After all, she was the one who referred me - and she sent me to him specifically for the removal of the fibroid - NOT for an ablation. But, I figured, hang in there. What's done is done and he said the worst that could happen was that I would still get a period. Since I actually hadn't gone to him intending to get rid of my periods - only to get rid of a fibroid - that didn't seem like a very bad worst-case scenario to me...
Well - it CAN get worse. And it has.

During my follow-up visit at 5 weeks (at which time I was still spotting daily and had already had a post-ablation period - which was about 2/3rds lighter than my pre-ablation periods - still more than any of my friends bleed when notes were compared, but lighter for me), I learned that hot-shot didn't end up using the roller ball after all. He said after he removed the fibroid, my uterus looked so smooth and well-shaped that he used the global method of a Novasure thermal balloon instead. So not only had he not gotten my INFORMED consent to even DO an ablation, he didn't use the technique he'd told me he was going to use. Next - I found out the assistant who took my call on day 5 was mistaken - that gush of blood couldn't have been from sutures dissolving - because I didn't even HAVE sutures! I was starting to have a very bad feeling about this...

And my gut was right. Hot-shot called last week to see how I was doing and I proceeded to tell him that I haven't had a single day since surgery of NO blood (that's 71 days today!!). Some days are worse (like around ovulation when I dump a bunch of brown, mucusy stuff over the course of 5 or 6 days - sorry, TMI - and have to wear tampons to keep from having embarrassing leaks) while about three days a month consist of just a tiny bit of pink or tan on the toilet tissue. Every other day is blood. Pads. Tampons. Using them all.

Turns out, this isn't normal. Surprise surprise. He tells me: "Of all the patients I'd especially want this to work for, it would be you since we sort of got off on the wrong foot." Yeah. No sh*t. Alas - not the case.

Not only did it not "work", but it has made my life worse. Where I bled for 4 heavy days once a month before - and always on schedule - I now never know when a gush is on its way and I have cramps with nausea at least half the month (I didn't have cramps before this. At all.) I wear either a pad or a tampon at all times and sex? We weren't worried about 4 weeks. But 10 weeks is starting to feel like some kind of sentence.

I'm scheduled for an ultrasound in a month to see what's going on. Hot-shot wants me to go through a third post-ablation period first because, as he put it, "if I look into my crystal ball, I really feel this is all going to clear up on its own." But his next guess is this: the balloon didn't properly cauterize the site of the fibroid removal so it is still an open wound and just as it starts to heal, the shedding with my period proceeds to slough off any scab that might have formed. On top of that, the reason I'm still having a period, his words: "sometimes the balloon doesn't reach all the way up to the top of the uterus and some endometrial tissue can be left behind." Really???? Then why the hell use it??? Why didn't he use the roller ball he told me he was going to use? If these turn out to be the reasons for the continued bleeding - guess what? We do a repeat procedure. Hospital again. General anesthesia again. A month off my horse again. $30,000 again. Seriously, this all cost $30,000! We would then be hitting $60,000 - for something that really never needed to be done in the first place. Unbelievable!!! And we wonder why our health care in this country is in such crisis??
The whole thing was not only a bust, but has rendered me a slow-leak mess. I've been keeping a daily diary since day one and I'm exhausted. I'm sick of having to write down every dribble, smear and gush. I'm tired of describing all the different colors. I'm discouraged, depressed and angry. I feel like suing for malpractice. Some hot-shot, huh?