Answered: My Most Frequently Asked Endometriosis Treatment Questions

I don't know a lot of people with endometriosis. But every now and then, a friend will connect me with someone who has recently been diagnosed. I'm 38, and they know I've dealt with endo — and the doctor frustration that comes with it — for about 25 years now. They hope I can offer a little guidance.

In case my story helps someone else, here's a look into some of those questions.

Have you had more than one surgery?

I've had two. In 2005, I  had a laparoscopy with ablation. They burned off endometriosis and an endometrioma on my left ovary. They also cut out a large mass of scar tissue that was covering my appendix. In 2010, I had another laparoscopy with ablation to burn off more endometriosis and endometriomas. My OB-GYN also did a dilation and curettage — or D&C — to scrape off a lot of my uterine lining.

These surgeries weren't that hard to recover from. I was semi back to normal in a couple weeks. But the D&C did leave me with a post-surgery infection — bacterial vaginosis — that lasted about 6 weeks. I probably would have gotten better quicker, but my OB-GYN originally thought my discharge was from the procedure. That meant she didn't give me medicine until I kept complaining.

Did surgery fix your pain?

I wish it did, but no. None of my pelvic or period pain went away. And it did nothing for my leg, hip, rib, or shoulder pain either. However, I'm very glad I had the first surgery. Getting rid of that giant hunk of scar tissue made sex possible. It was physically blocking penetration before that.

Do you have big scars?

Nope. After two surgeries, I have three tiny scars. You have to look really hard to see them. One is in my belly button and the other two are on each side of my hips — above where my ovaries are (I think). The surgeries didn't change how my body looks in any noticeable way.

Why didn't you get excision?

I don't know that my OB-GYN 10 or 15 years ago had ever heard of excision. And my most recent OB-GYN doesn't do it either. I plan to make an appointment with the one excision specialist covered by my insurance soon — whenever this global pandemic is over.

Do you have endo on other organs?

I have no idea. No doctor has ever checked. And believe me, I've asked. They always tell me it's too rare to check for. (It's not that rare, studies show it's just under diagnosed.) With that said, I'm fairly certain I have endo or adhesions on or near my diaphragm and sciatic nerve. I plan to ask my soon-to-be new excision specialist about this.

Did birth control help?

No! And don't let any doctor ever tell you that you have to be on hormones. My endometriosis and endometriomas came back only three months after my second surgery — and I was on the Nuvaring the whole time. Before that, I'd spent years dealing with terrible side effects with birth control pills. BC never eased my symptoms. In fact, they made me feel worse.

But I've never tried the Mirena IUD, which some friends say really helps their period pain. My experiences with hormones have been so terrible that I don't want to chance it.

Did you try Lupron or Orlissa?

No. The side effects are too scary and it's not a long-term treatment.

Has anything helped you feel better?

Yes! Here's a list:

•  Pelvic floor therapy: I can't say enough good things about this. I wish I'd tried it 20 years ago. I didn't know I had pelvic floor tightness; I was contracting all the time, unconsciously. The exercises — which I do at home — helped lessen a lot of my ongoing muscle pain and spasms that I thought was endo pain. (I mean, it's indirectly endo pain, but it's not caused by a lesion.)
• Diet changes: I probably have more bowel symptoms than I do anything else. If I eat a trigger food — like cauliflower — my belly can go from flat to looking 6 months pregnant in about 2 minutes. My gastroenterologist turned me onto the low-FODMAP diet, and a clinical dietitian helped me figure out how to do it while getting enough nutrients. I also take a digestive enzyme — generic Bean-O — to help me digest things like oats and broccoli.
• Going gluten-free: This gets a separate entry because it didn't help with my bloating, but giving up wheat basically cured my joint pain. I'm not celiac, but my GI doc told me I have non-celiac gluten sensitivity.
• Meditation: I've dealt with depression for longer than I've had periods. The Headspace app helps me handle my stress a lot better, which helps ease my non-stop worrying. When I'm not depressed, I feel less pain. Meditation also helped change my perception of some of that pain. (Seriously!)
• Antidepressants: I have a love/hate relationship with these. Endo is real, so I don't want to medicate my pain away as if it's all in my head. But technically we process pain in our brains, and I hurt a lot less when I took an antidepressant for three years. They also stopped my menstrual migraines. However, I quit because I couldn't tolerate the side effects. And my pain came back when I stopped the meds.

Have your symptoms gotten worse with age?

I love this question because it's so complicated. My pain and nausea were worse in my teens, and certain symptoms — nausea and bladder pain — sort of went away on their own. With diet changes, I felt great for the first half of my 30s. But after I turned 35, my period pain got a lot worse. And so did my cyclical lower back and diaphragm pain. I don't know why.

What will you do next?

Good question. I plan to see that excision specialist as soon as it's safe. Hopefully, he'll take some of my new symptoms a little more seriously than my last doctor.