My Top 5 Endometriosis Tips for the Newly Diagnosed
A friend in her late 30s recently had surgery for an ovarian cyst. It turned out to be an endometrioma.
Her doctor diagnosed her with stage 4 endometriosis. She'd heard of endo, but it wasn't on her health radar. Even with a history of pelvic pain, she assumed someone would've mentioned it before now if endo was the cause.
Newly diagnosed with endometriosis
She wasn't quite sure what to expect next. I immediately wanted to give her a rundown of everything I'd gone through over the past 30 years with endo.
Here are the top 5 things I would tell someone just diagnosed with endometriosis.
Hormonal birth control doesn't cure endo
There's no cure for endometriosis.
But there's a long-held belief that lesions won't come back as fast after surgery. Many doctors, including my own, suggest hormonal birth control (HBC) immediately.
Though, there's not a lot of long-term scientific evidence to support that HBC can prevent a recurrence of endo.
However, it's important to note that doctors and researchers disagree with using post-surgery HBC. Many are for it. But others, like my recent surgeon, don't recommend it after excision surgery.
My physical and emotional symptoms actually worsened on hormonal birth control. On top of that, my endometriomas and other endo lesions came back.
Or maybe they never went away in the first place. My first and second surgeons performed ablation instead of excision. That means they burned off my lesions and cysts instead of cutting them out.
With that said, it's reasonable to try hormonal birth control to see if it helps you feel better. There's scientific and anecdotal evidence that progestin-only methods may be more effective at lessening pain in people with endometriosis compared to birth control with estrogen and progestin.1
Some of my friends say the Mirena IUD, an intrauterine device, eased their pelvic pain and heavy bleeding. But I haven't tried it myself.
Ask about pelvic floor therapy
My first endo surgery happened when I was 24. But I didn't get the chance to try pelvic floor therapy until my late 30s.
It's not something my doctor at the time recommended. I had to push my OB/GYN to make a referral.
That's because she said she didn't notice much pelvic floor tension. But she guessed it "couldn't hurt" for me to try it.
I'm glad I went despite her lack of enthusiasm. My pelvic floor therapist said the tension in my pelvic floor was sky high. She showed me helpful exercises I continue to use.
I think pelvic floor therapy should be a standard part of treatment for anyone with pelvic pain, bladder or urinary pain, or pain with sex.
It's worth asking your doctor if you have those symptoms and you're not sure you have endo.
Talk to a dietitian
I've written a lot about diet changes for endometriosis.
There isn't one person in my endo circle who doesn't have digestive issues. Symptoms like belly pain, bloating, diarrhea or constipation, and excessive gas can happen regardless of whether you have endo on your bowels.
I worked with a clinical dietitian familiar with endo to fine-tune my food plan.
Changing doctors is OK
I ditched my last OB/GYN, who didn't think I needed pelvic floor therapy for an excision and endometriosis specialist. My ex-doctor flat out refused to do any CT or MRI imaging.
Surgery was out of the question. Instead, she said I could first try hormonal suppression or birth control. If my pain went away, then she'd know it might be endo.
I said no to hormonal drug treatment as a form of diagnosis. That's partly because an excision specialist and medical director told me years ago that drug treatment isn't a good way to rule out endo.
It took me a couple of years, but I found an excision doctor. He agreed that surgerywas the right option. I laid out my symptoms, and he took them seriously.
He didn't find any new endometriomas during the procedure. But he cut out scar tissue adhering my abdominal wall to my intestines and one spot of endometriosis on a ligament under my uterus.
He also found several "deep retraction pockets." I'd never heard of these. But my surgeon and other researchers think they're an undertreated and less recognized sign of endo.2,3
You may know more about endometriosis than your doctor
I've never had a primary care doctor who knew more about endometriosis or treatment than I did. I don't expect a general doctor to be up on all the latest info.
But unfortunately, I also tend to know more than my OB/GYNs. Because of that, I've received a lot of pushback when I disagree about a treatment method. One doctor even called me "difficult" when I advocated for myself.
For my last surgery, I drove a few states away to an endometriosis specialist. He's someone with many years of excision surgery under his belt.
And it was well worth it. He validated all of my concerns, agreed I was right to push for different treatment, and helped me feel better physically and emotionally.
If you need help finding an excision specialist, you can find some tips here.
Do you have tips for people newly diagnosed with endo? We'd love to hear them in the comments.
Has anyone ever said the following to you about your endometriosis?