I can’t believe I forgot to mention this in the last few recovery posts. It’s very easy to focus on all the bad and forget to mention the good news!
Since I started blogging, I’ve met many women who also have endometriosis, and even a few men who knew loved ones who had it. If you’d like to know more about what endo is, be sure to check out the FAQ. It’s always a blessing to find someone who you can relate to, but in many ways it can be stressful. Endometriosis, while common, is still very much a medical mystery. There are many effective treatments, but no cures – which means no solid answers. There may very well be different kinds of endometriosis, which would explain why treatments that work so well for some women don’t help others at all.
I’ve written before about the debate on whether pregnancy is a viable treatment for endometriosis. What I hate most about it is that so many people claim it’s all lies, while others swear to it’s truth. Listen well: There are absolutely no ultimatums here. It eliminates the symptoms for many women. Other women actually get endometriosis after pregnancy. No one – not even doctors and scientists – can say anything will get rid of the symptoms. Not pregnancy, hormone pills, a change in diet, a hysterectomy, nothing. I am extremely passionate about this. Every woman is different. And if you’re reading this and looking for a cure for your endometriosis, stop. The internet is full of claims, all biased, none true. The only thing you can believe with certainty is what has or hasn’t worked for some women. There’s no way to know what will work for you until you try a few things and see.
In my case, I’m blessed with a great doctor who knows a lot about endo. He’s operated on me three times now. For a long time, hormone treatment worked wonders, but it’s stopped helping. Not uncommon – though that doesn’t mean it’ll stop working for you too. From his experience and familiarity with me and my body, he says he thinks pregnancy would help a lot – though is always quick to say there’s no guarantees. And I hate it when people online scoff at that and tell me it won’t help anything.
1.) I’m inclined to trust my doctor, who not only has a degree, years of experience, a specialty in endometriosis and fertility, and multiple awards for being one of the best doctors in the country – But who has worked with me personally for years, has seen how I react to a multitude of treatments, and has so far caught every curve ball my difficult body throws at him – Much MORE than a faceless internet profile that has known me for all of five minutes.
2.) Who the f*** seeks out people who have the same condition they do only to dismantle their hopes and try to convince them to give up now because they’ll never get better? No, this isn’t about false hopes – these are viable treatment options. Could they fail? Sure. But life-saving operations fail all the time, that doesn’t mean you should just shrug it off and die.
Run on sentences and cursing! I’m getting very worked up.
My issues with the negative sides of the online health community is a post for another day.
Anyway. Those examples were extreme. They make me mad, but what can be more stressful is more well-meaning advice. People who aren’t saying you’ll never get better, but who do think the treatment you’re pursuing is a bad one. It’s especially stressful when it comes from a friend who you love to pieces.
“Gee Rachel, for a post about good news this sure is depressing!”
Sorry, I’m getting to the goodness. A couple of years ago I was getting ready to have my second surgery. I was preparing for some time off work, and found out that one of my co-workers had endo too. She was much older than me, but we were still able to bond over our shared experience. Things were of course quite different for her when she was first diagnosed. Technology was different, the amount known about the disease was different, and it was interesting to learn about. But then she mentioned her history of laparoscopies. For her, the scar tissue from the operations was often worse than the endo itself. She ended up having a hysterectomy (complete removal of the uterus). I’m very happy she found a treatment that helped so much, but I was 21 years old – I was not about to remove my uterus.
Not that she was suggesting that, of course! But it planted a seed of worry and doubt in me. What if this surgery made things worse? What if I was only sick now because of scar tissue from the surgery before?
I didn’t feel better after that surgery. After that, I wondered about scar tissue and sought alternate treatments, eventually getting diagnosed with IBS as well – another illness that’s completely different for each person that has it, but that is commonly found with endo. I vowed to not have one more surgery until I had tried pregnancy – thinking, of course, that I’d have at least 4 or 5 years before I needed a surgery again – oops.
After this last surgery a month ago, I’ve felt so much better that it seems quite silly to have gotten myself so set against surgery. I expressed all kinds of stress and worry to my doctor, and he always said that it was my choice, but he strongly felt it would do more good than harm. He was right.
In fact, (HERE’S THE GOOD NEWS PART, SKIMMERS) in the post-op report he said he was really impressed with how much my body “liked” surgery. He said he’s been doing this a long time, and he rarely sees a body heal itself up quite like mine does. No scar tissue anywhere – everything had healed good as new from the surgeries before.
And that’s not all!
While it was a blow to see how much endo had adapted to my body and had grown and spread at an unprecedented rate, there was not one speck of it growing in the places where it had been previously removed.
It’s easy to get to feeling depressed about how much my body seems to suck at everything. I’m ashamed that I forgot to mention this small victory. Watching my scars close up and heal has been a good everyday reminder that I have my strengths. I bounce back. I get up. I patch up. I move on.
What is your body good at? Sing me the body electric! Tell me in the comments about your unique talents. And stop telling people what will and won’t help them! Share your story as just that – YOUR story.