Three months post excision

It’s been three months since my excision surgery. (I feel like I’m talking to a priest in a confessional here a la “it’s been two months since my last confession…” etc.)

I guess the question I keep asking myself is, do I feel better now than before my surgery? Have I found any relief?

That’s a tough question. Since my excision surgery in February, I know a million times more information about endometriosis than I did right before I had the surgery. Why? Because I’m obsessive (thanks to me being a high-functioning anxiety-ridden reporter with a fear of letting go of my perfectionist tendencies), so most of the time I spent in bed following the surgery, I read. I read other women’s stories. Stories about how much their lives sucked and stories about how horrified they were to learn that they’d be struggling with this debilitating disease for the foreseeable future. I also read a lot of great advice from other women who had surgeries like mine. I explored Nancy’s Nook on Facebook, where if you haven’t checked it out, I implore you to do so. Nancy has a plethora of information and provides it to anyone who is interested in educating themselves about endo and how it can affect one’s life.

Nancy has the most up-to-date information on endo that I have found online. Every now and then I search various endo topics on Google (or Bing) and find old, archaic definitions of the disease. It’s no wonder we can’t get anyone to listen to us. No doctor agrees on what it is, how it spreads, why it spreads and how to help patients achieve the highest and best degree of relief from it.

Endo sisters on Facebook groups, I found, know far more than their own gynecologists. It’s depressing when you have to tell your gyno that removing your uterus will not “cure” your endo. It won’t. Stop asking us to do it.

Yes, it sucks that there isn’t a cure. It sucks that I still have to see my doctor several times over the course of the year (several times during the past two months alone). It sucks that I have been to the ER for endo-related issues about three times in less than six months. It sucks. I’m sorry, but there is not a more eloquent way to say this.

Being a woman with endometriosis, isn’t simply an inconvenience. It doesn’t just affect one area of your life. It’s not like a period, where you have it for five to seven days out of the month and then forget about it when it’s over. It’s not a mildly annoying pain in your back or head either.

A full-blown “endo flare” can leave me on my knees, crying. It can completely debilitate me and take away any ounce of energy I remotely thought I had. During a flare, my back burns, an excruciating pain in my pelvis causes me to hobble around like a penguin and my abdomen can appear as though I’m about to give birth.

And that irony is not lost on me. A large number of women with endo have trouble conceiving, so there goes any shot at having my own baby.

If it sounds like I’m upset about this, well then maybe I’m not making myself clear. I’m not upset about this. I’m livid.

One in 10 women have this unpreventable disease (is it preventable? I don’t know. Who knows? Do you know? Does your gyno know? Tell them to call me). One in 10 women have endometriosis. That’s millions of women. ALL. OVER. THE. WORLD.  And yet, many women everywhere are still getting zero relief from the prescribed ways known to treat endo.

So am I feeling better? I have been lying in bed for the past four hours after an 8-hour shift, where I struggled to work due to the severe pain in my pelvis and lower back. Just like many women across the country, I suffer with the embarrassment, the shame and side effects this paralyzing disease leaves in its wake.

So after two surgeries to help with this endo, I don’t really know what to say to those who ask me about whether I’m “feeling better.” All I can say is what all endo sisters,who struggle with excessive pain everyday (my 6 is your 10 babe), tell each other – I hope you have a relatively pain-free day. That’s all I can hope for at this point.

3 thoughts on “Three months post excision

  1. I’m 18 months post excision. Those 18 months have been the healthiest for me from an Endo point of view in the last 6 years or so. Not completely symptom free, but significantly better than I have ever been since years before my eventual diagnosis. For me, I would say yes, that excision has helped. My Endometriosis / Adenomyosis symptoms have now returned though, so it’s onto treatment to give me a break for a while, and then plans for further management. Whether that’s meds or surgery I don’t know yet, but I’m trying to hold onto those 18 months that I had where life was better. I feel your frustrations though, and understand where you’re coming from. Before I had excision, I had 3 surgeries that didn’t bring much improvement at all, so I spent many years feeling as if the medical community treated me as some kind of weird anomaly. The other frustration that I have is people who say ‘oh you obviously haven’t had the right surgery, because if you had then you would be cured for life’. I have had surgery, I am very informed and I have approached my Endo care from all sorts of angles. We can only do what we can with what we have. Sending hugs xx

    1. Thanks dear. Some people have said its too early after the surgery to feel relief and that I shoukd check back by month six but I’m not sure.

      1. I was also told that I should feel month on month improvement for the first 6 months, and to an extent I probably did. It wasn’t massively noticeable, but just small changes compounding I guess. It’s hard to know how you will react as we’re all so different, but I really hope that this surgery does bring you relief in some form. I’m a little sad that I’m having quite significant symptom recurrence just on 18 months post surgery, as so many people insist that once you have excision you’re ‘cured’ (even though I didn’t really believe that). But I just hold onto the 18 months that I had where the Endo stuff was mostly faded into the background, and feel grateful that I had that. I really hope you see some positive changes over time, for your sake xx

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