The TMI* Post, Part Two
(*you can read The TMI* Post, Part One by clicking here.)
Yesterday on the blog I talked about my upcoming hysterectomy. At the end of that post I said I’d explain why I need it done, and why in addition to feeling emotional and conflicted, I’m also feeling a bit angry. I’m sharing this because I think it’s important; I really do want my experience to serve as a cautionary tale.
Before you read any further, I feel the need to point out that I’m about to tell a medical tale. If you are squeamish when it comes to medical talk, this may not be the post for you. I’m not going to be overly graphic, but if medical talk makes you woozy, especially frank talk about Lady Problems, well, you’ve been warned.
Okay, still with me? Here we go…
Back in April of 2008, I had a procedure called an endometrial ablation. I was suffering from menorrhagia and it was really affecting my quality of life. My doctor tried adjusting my birth control medication and my thyroid medication, but nothing helped. She then referred me to a surgeon to see if I’d be a candidate for an ablation.
The surgeon told me I was an “ideal” candidate. I was young (36 at the time), I didn’t have fibroids or endometriosis, and I was done having children. He told me that the procedure would probably end my periods. I would still ovulate, so there’d be no hormonal disruption, but I could expect to have very light periods or, more likely, none at all. The only “risk” was due to my age; since I was still approximately 20 years away from menopause, there was a chance that the endometrial lining could grow back. But if that happened, the return of my period would be very light and therefore manageable as I sailed into menopause.
Yeah. It didn’t work out that way.
For seven years, I considered the ablation a total success. I had NO periods at all, and I’m not going to lie, it was awesome. I went from suffering for 7-10 days every month to being completely pain free. It felt like a miracle.
Several months ago, I started to get cramps. Cramps that were definitely of the menstrual variety. I thought, “Well, they did tell me my period could return. I made it seven years, I guess I had a good run.” I bought the necessary supplies and waited for a period that never arrived.
The next month, the cramps returned, and this time they were much worse. But again, no blood. The following cycle, the cramps were so intense and so painful that I thought I might be dying. It reminded me of labor; I had that same panicky, I-want-to-claw-my-way-out-of-my-own-body feeling that I remember having during labor (before the epidural), but it lasted for several days. I wanted my period to start so I could get past it, but there was still no blood.
I went to my doctor, who ordered an ultrasound and referred me to a surgeon. The surgeon ordered an MRI. Both tests showed the same thing: the endometrial lining had indeed grown back, and there are three separate hematometras in my uterus. There is a lot of scarring at the base of my uterus, however, essentially sealing it shut. This explains why I am in such intense pain every month; my uterus is contracting, trying to expel the blood, but it’s unable to come out. My doctor attempted to do a D&C to remove the lining and hematometras, but it was unsuccessful; the scarring from the ablation was too extensive. The only solution is a hysterectomy.
So that’s why I need to have the surgery. But let me tell you why I’m angry…
When I started going through this, I googled “cramps after ablation”, and I found dozens and dozens of message boards filled with comments from hundreds of women, and they all told versions of the same story: “I had an ablation, it worked for a while, then debilitating pain followed by a hysterectomy.” Then I found two published medical studies that followed the long-term outcomes of women who had ablations.
One was published in The Journal of The American College of Obstetrics and Gynecology in 2008 (too late to help me). It’s several pages long, but here’s the main takeaway:
“For women aged younger than 40 years (at the time of the ablation), probability of hysterectomy is 40%, and rather than plateauing (after two years), it continues to increase throughout all 8 years of follow-up.” (emphasis mine; click here for link to article)
Another article I found was published in The American Journal of Obstetrics & Gynecology in 1996 (most definitely NOT too late to help me). You need to pay to read the article, but you can read the abstract for free. This certainly jumped out at me:
“CONCLUSION: On the basis of our findings one third of women undergoing endometrial ablation for menorrhagia can expect to have a hysterectomy within 5 years. If the linear relationship noted during the first 5 years is extrapolated, theoretically, all women may need hysterectomy by 13 years. Most patients undergo hysterectomy because of significant pelvic abnormality.” (emphasis mine; click here for link to article)
Can you see why I’m feeling angry? NO ONE TOLD ME THAT THERE WAS A 40% (OR HIGHER) CHANCE THAT I’D LOSE MY UTERUS.
I did not have informed consent.
There is a private Facebook group for women who had the NovaSure ablation (which is what I had), and it is filled with stories just like mine, or worse. Doctors still continue to do this procedure every day. According to the Hologic website (the manufacturers of NovaSure), they hit the 1 million procedures mark in 2009. I couldn’t help but notice that one of their main blog buttons at the top of their website is for their daily stock quote on the NASDAQ. It’s clear where their priorities lie, and it’s not with the women who are the victims of their faulty medical device.
Naturally I started thinking, “There’s got to be a class action law suit going on by now, right?” Wrong. NovaSure is a Class 3 Medical Device, and therefore it cannot be the subject of a lawsuit**. How convenient. Women like me are not given information about the long-term outcomes, only to find themselves facing a hysterectomy after going through extreme pain and distress, and there’s nothing we can do about it.
Well, that’s not entirely true. We can file a complaint on the FDA website, which I did. That and $2 will get me a cup of coffee. And an inevitable hysterectomy, apparently.
Hence my anger.
I don’t want to end this post on a negative note. I know that stewing in anger isn’t helpful. I know the train has left the station and I need to have this done, regardless of whether or not it’s “fair”. So I am posting this to my blog as a cautionary tale. If even just one woman reads this and therefore considers all of the relevant information before deciding to have an ablation, my anger will have done some good. If even just one woman is in pain after having an ablation and is wondering what is going on and finds this post, I hope she knows to push for the right tests, especially if her doctor dismisses her concerns.
I also know that despite all of this, I have a lot to be grateful for. I have access to excellent doctors and surgeons. They all had a sense of urgency and scheduled my tests and appointments quickly. They believed me when I said I was in pain, which many women know doesn’t always happen, at least not right away. They gave me narcotics to get through the pain. I have health insurance. I have an amazingly supportive husband, family and friends who will see me through this. I am relatively young and healthy, and I will recover. I don’t have cancer. Our family is complete and we had no plans to have more children, so it’s not a loss of fertility for us. I am having the “easiest” of all hysterectomies (laparoscopic, uterus-only; I’m keeping my ovaries and my cervix). The hospital has all private rooms!! I will get through this and after the four- to six-weeks recovery period, I will be (hopefully) done with the pain.
If you’ve read this far, you made it through another long, picture-less blog post without a single DIY-tip or book review. You’re a real trooper. Again, thank you.
My surgery is scheduled for Wednesday, September 9th (the second day of school!). I will post an update from the other side. And then I’ll go back to sharing fun projects and general musings, I promise.
*Again, this is definitely not Too Much Information! Information is knowledge and knowledge is power!!
**here’s an article from the NYTimes about the laws re: Class 3 medical devices and lawsuits from 2009.
