LATE ONSET ENDOMETRIAL ABLATION FAILURE

(OR: WHY I NEED A HYSTERECTOMY)

This post is a continuation of my personal posts on my hysterectomy journey thus far. Please read PART 1 and PART 2. There may be graphic and adult content, please be advised. I am not a doctor, this is based on my experiences and my research, and is to be used for entertainment purposes only. Please see a doctor if you have any concerns.

Hello my friends! Thanks for joining me on my hysterectomy adventure. As I am learning new things, I figured I would share them with you. I am still awaiting my ACTUAL surgery, which I am feeling better about day by day, especially when I am in pain. Because my doctor explained a little bit about what was going on with my in terms I could understand, I thought I could do my own research into what is happening with my body and if I could have prevented the need for surgery at all.

HISTORY

Before I get started on what is happening now, let me give you (graphic) details about how I got here to begin with.

My whole adult life, I was cursed with painful heavy periods for the first few days, and then it would be normal for the rest of the week. Although I was pretty regular, I always seemed to be due for my period whenever there was an event I wanted to attend or something I needed to do, and while it is an inconvenience for every woman, of course, I was extra anxious every month because of the amount of bleeding I had.

When I say my periods are heavy…I mean they were HEAVY! I had to wear BOTH a heavy duty tampon and an overnight, heavy duty pad with wings, because I would bleed through both within an hour. I had to sleep on my side and wake up every hour to change my products just so I wouldn’t mess the bed up. When I sat down, I feared standing up again and knew I had to beeline to the bathroom as soon as I could to clean up whatever mess would inevitably happen.

When doctors would ask me about my period, I would mention that they were pretty heavy and I always heard that was normal. I envied those who told me how light theirs were and how they made me feel like a baby for wanting to decline offers, as if I was just complaining about what every woman goes through.

It is amazing how women have even less sympathy for what other women are going through sometimes. Maybe because they base other’s experiences on their own and don’t truly understand…

So, I lived with it, even on my wedding day 6 years ago. The embarrassment of needing help in my wedding gown all day to keep changing my products was humiliating. Luckily, there were no accidents that day. I told myself that I would talk to my gynecologist at my next appointment to see if I could just get put on birth control or something to make my periods lighter.

Fast forward to the beginning of the next year, when I finally had my appointment. At the end, when I was asked if I had questions, I brought up my concern. My doctor asked me how often it took me to bleed through a pad or tampon. When I explained to her that I could barely last 45 minutes while rocking both a tampon and a pad, she grew concerned. She said that wasn’t normal and she would like me to have an internal ultrasound before we discussed our options. I was relieved that I wasn’t being brushed aside and annoyed with myself for having waited so long to ask for help.

After my ultrasound, I found out that I had an unusually thick uterine lining. In case you aren’t sure how all this menstruating stuff works, let’s do a quick refresher: Every month, you start growing a thick lining in your uterus full of blood and nutrients to support a future pregnancy. After ovulation, if the egg is fertilized, it attaches to the lining and grows from all that protective stuff. If it isn’t fertilized, then your body will start shedding the lining and you bleed. Pretty straightforward. My lining was very thick, so my uterus would cramp more and harder to try to get rid of it all and I would bleed very heavily.

The problem with this happening, is a thick uterine lining can end up causing endometrial or uterine cancer. If I had still wanted children (I had my tubes tied years ago, so this wasn’t an issue for me), it could actually affect your ability to carry a pregnancy. So, my doctor offered me an ENDOMETRIAL ABLATION. She said that I could have a hysterectomy, but the ablation would be less evasive and easier to recover from, and that I was a good candidate for it. I had never heard of it, but it sounded better than surgery!

ENDOMETRIAL ABLATION

An endometrial ablation is an in office procedure, usually, that is done while you are awake and with pain pills (at least in my experience). A device was inserted into my uterus and then in 90 seconds, it burns away all of the lining. There are several methods that can be used, and I am not sure exactly what mine was…but it hurt! I breathed as if I were giving birth during those 90 agonizing seconds, high as can be on pain meds! I guess you can’t expect a procedure like this not to hurt!

My doctor showed me the picture of my pink uterus before, and the gray, dead uterus after and I was so happy! No more heavy periods, right? My doctor warned me that some people do regain their periods after some time, and if that happened, I may need to revisit having a hysterectomy. I was okay with that…especially when I realized it had worked for me!

No more periods! I had bled for about a month after the procedure, which was normal and then I never had another period again! I still have my hormonal cycle, my body reacting as is I am having my period, but I haven’t had any bleeding in 5 years. Success…right?

When I started having the “ovarian pain” in my left side, it was sporadic (or I wasn’t paying attention). I just told myself it was normal ovulation pain, probably a cyst that would burst and it always did feel better after a few days. Some days, I would be doubled over in pain, other days I would need to lie down. After awhile, it would feel like I needed to go the hospital when it would overcome me, but then it would dissipate and I would be glad I hadn’t gone. (I have a fear of going to doctor/hospital and finding out nothing is wrong with me…it’s weird).

I worried it was some other organ that was causing me pain. It was causing pressure on my bladder and bowels, making me have to go the bathroom often. But it would go away and I would forget for awhile. Eventually, I made a joke about it to my daughter, who thought I should probably get it checked out. “Oh, I will at my next appointment.” I never make appointments when something is wrong, I just wait until I was going to be seen anyway!

LATE ONSET ENDOMETRIAL ABLATION FAILURE (LOEAF)

I had my visit, had an ultrasound, and was told I needed a hysterectomy, that I had “several fibroids and a mass on left ovary.” Then I was told I couldn’t make the appointment to get any answers for a month and a half (See My Hysterectomy Journey: Part One)

During the second visit, my doctor asked me if I had any bleeding. I told her none for the last 5 years. She then explained to me that in some women, the uterine lining will start to grow back and they will get their periods again, and that it wasn’t really cause for concern in most cases, because at my age, for example, I might be able to wait it out until menopause, when my body would naturally stop the process.

My situation, however, seemed to be that I am shedding my lining, but it is not exiting my body. There could be scar tissue covering my cervix, and that my uterus is contracting harder to try to expel the lining, and that the blood is collecting in my uterus, causing the pressure I am feeling.

The hysterectomy is the best option, in this case, because I will just keep having this pain, and it might get worse. Better to remove the whole thing! (See My Hysterectomy Journey, Part two)

Since that appointment, I have been going through a whole range of emotions, but then, ever the researcher that I am, I decided to see: 1) If this was normal or had there been a mistake with my ablation? 2)If I truly needed the surgery, or could I get out of it? and 2) If I should have just had the hysterectomy 5 years ago?

Turns out, this has a name! LATE ONSET ENDOMETRIAL ABLATION FAILURE and is common in 25% of women who have an ablation. Symptoms of LOEAF include:

  1. Persistent or recurring vaginal bleeding
  2. Cyclical Pelvic Pain (CPP)

I didn’t have the bleeding, but the CPP is what I had been mistaking my ovarian pain for. The pain is cyclic, meaning in occurs monthly or every other month, in my case, and is caused my bleeding into my uterine cavity, causing pressure. For some women, the procedure doesn’t work at all right away, but for others it may take a year or more: hence the term “late onset.” It commonly occurs 8 years after the ablation, but can happen at any time. If mine had waited 3 more years, I would have been able to slide into menopause with no hysterectomy…damn!

Why does the lining grow back? From my research, it seems there are two ways: either a spot of lining was missed and not burned out, or there had been fibroids or polyps present that were not removed before the ablation. Because the uterine lining is living tissue, if there is any left, it will continue to grow. I do not know the specifics of why mine grew back, but no one ever mentioned fibroids prior to my last visit, so maybe there had been scar tissue or some abnormality due to my previous pregnancies? I don’t know.

With all of this information, I started wondering, then if the ablation had been worth it. Should I have just had the hysterectomy earlier? Was it worth it and would I do it again? The answer to the last question is YES! 5 years ago, I was not in the position to be having a surgery and taking time off work…and quite honestly, I went through some depression even after the ablation, I don’t think I was mentally prepared for a hysterectomy. And the last 5 years with no period brought me the freedom and joy that I had never known before that. I would gladly recommend an ablation to any one who knew they didn’t want children in the future – but I would also make sure they knew the possibility of LOEAF, and what that could mean for them.

SOURCES:

Thanks for following along! I will update with more when I can, I hope you are enjoying my journey and learning something that might help you along the way. If you haven’t signed up for my email list, make sure you check out the home page and sign up at the top. Follow Being Grown Up on social media and your favorite podcast subscriber. XOXO

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