Endometriosis is a chronic condition that’s chronically misunderstood. Unfortunately, those doing the misunderstanding are sometimes medical health professionals. When I say I’m lucky to have found my gynaecologist first-go, I’m not being flippant. I did my research — read patient reviews and investigated qualifications — but so do a lot of people who wind up receiving sub-par care for this shithole of a disease.
I’ve since learned a lot more about what endometriosis is and what the industry standards for treating it are. If I had to shop for a gyno now, I’d have a lot more questions. What follows is a bunch of them.
Quick caveat: I’m not a medical professional. The following advice is the result of living with this disease, talking to specialists, and a lot of painstaking research. I’d encourage you to do your own reading, talk to your own specialists, and educate yourself about endometriosis. If you’re unsure about a course of treatment being offered to you, get a second (or third, or fourth) opinion. Doctors aren’t infallible, especially when it comes to this trashfire of a condition. But neither are randoms on the internet (like me).
The following questions are ones I’d be asking if I were shopping for a gynaecologist right now. I’m hoping they’ll serve as a jumping off point that encourages you to be proactive in your own treatment. Because, unfortunately, that’s the current endo landscape right now.
Do your research, don’t be afraid to ask questions, and trust wisely. You’re Fox Mulder and the truth is in your uterus, pals.
“Do you perform laparoscopic excision? Or do you perform ablation?”
Your gynaecologist should perform excision. It’s the gold standard for endo treatment right now. If they aren’t trained in laparoscopic excision, ask if they can refer you to someone who is. If they don’t know what excision is, backflip the fuck away from them.
If they only perform ablation, odds are high that they’ll:
a) miss growths altogether because ablation burns only the surface layer of the endometriosis
and b) damage the healthy tissue around the growths, making your recovery longer and more painful than it has to be
Ablation is the reason a lot of people rack up double-digit surgeries. You don’t want that, trust me.
“Can you identify deep infiltrating endometriosis? Can you treat deep infiltrating endometriosis?”
Deep Infiltrating Endometriosis (DIE) is a specific form of endo that has the most apt acronym on the planet. DIE doesn’t superficially plant itself around your pelvis, it chooses instead to infiltrate your pelvic structures. About 20% of those with endometriosis deal with this shit.
DIE can sometimes be identified by transvaginal ultrasound but is also often harder to treat.
Your prospective doctor being unable to treat DIE isn’t necessarily strike 3 against them. They do however need to be able to identify it so they can refer you on to someone who can treat it. More on this here (warning for internal anatomy photography if you click through).
“Can you identify subtle superficial lesions? Do you understand that not all endo looks the same?”
Most endometriosis growths present as superficial lesions – these are the shits that won’t show up on an ultrasound because they just look like normal tissue on the scans. Diagnosis of endo if you have superficial lesions requires laparoscopic surgery.
BUT that’s not all. Your doctor also has to know what the fuck they’re looking at once they get inside. Endometriosis presents in different ways and some doctors aren’t trained to look for all the different types. Endometriosis can be mistaken for normal tissue. If your prospective gyno is only looking for the black puckered presentation of endometriosis, they’re likely to miss other growths, and you’ll require more surgery sooner.
“Are you able to operate on the bowel or bladder?”
If they can’t, and if you have extensive growths on (or in) either, they’ll need to get another specialist in. If they say they can BUT they’re not specifically specialised to do it, I’d personally backflip the hell away. Fucking up your bowel or bladder through botched surgery is the worst possible time.
“Are you able to operate on adhesions through laparoscopic surgery?”
Adhesions are bands of fibrous scar tissue that can form inside the body. They regularly occur in people suffering from endometriosis because the endo causes inflammation that then tries to “heal” itself. If two inflamed areas of endometriosis come into contact with each other, then the scar tissue can form a band between those two areas – that’s an adhesion.
If your prospective gyno says they can’t operate on adhesions through laparoscopic surgery ask for a referral to someone who can. If they try to tell you they need to perform major surgery, get a second (or third, or fourth) opinion. I cannot stress this enough.
If they perform major surgery to treat adhesions they increase the risk of more adhesions occurring. You don’t want that. It sucks every ass in the world.
“Do you recommend getting pregnant as a treatment for this disease?”
If they say yes, run fast in the opposite direction. Pregnancy doesn’t cure endometriosis and anyone that tells you otherwise is peddling a super harmful myth.
“Do you recommend a hysterectomy as treatment for endometriosis?”
Real talk: I’ve had a hysterectomy and it’s improved my circumstances. That said, my circumstances included the beginnings of adenomyosis, a uterus riddled with fibroid cysts, and a congenital defect. The only way my hysterectomy has impacted my endometriosis treatment is I no longer have to worry about hormonal birth control.
If a doctor’s go-to treatment for endometriosis is a hysterectomy I’d back the fuck up out the door. A hysterectomy is no guarantee against reoccurring growths. Furthermore, doctors that peddle this treatment often don’t know how to properly excise current growths, meaning the root cause of the problem is still very much present, active, and continuing to spread.
And finally: ask for recommendations
There are a lot of endometriosis groups online – we tend to band together against the harsh winter of our shared experience.
The endometropolis facebook group is one of the bigger, international ones I’m involved in. They have a Google maps reference list of specialists that treat endo. It’s world-wide but not entirely exhaustive. I know for a fact that some Aussie specialists are missing. They also recommend doing your own research on the doctors that are listed.
I’m also on My Endometriosis Team but am notoriously slack about my involvement there so can’t give you a detailed recommendation.
My best advice would be to find a smaller endometriosis Facebook group specific to your locale. I’m in one for my hometown and we all compare notes on everything from gynaecologists to physios to pain specialists. They’ve also been an indispensable support network for me.
With that in mind, if you’re based in Brisbane, Australia, you can send me an email and I’ll send you my gyno’s details plus a bunch of links to my Brisbane-based endo support network. I promise you don’t have to go through this shit alone ❤
I hope this post armed you with a few tools to help you find the treatment you need. Any questions, feel free to drop a comment below or you’re welcome to attack me on Twitter.
Want to learn more about endo? I have just the primer.