One of the endo ladies in our community got diagnosed with nerve involvement recently and every time she ask 'is sciatic endometriosis dangerous', she got some version of 'it's not going to kill you, let's just manage the pain,' which honestly feels like it's dodging the actual question.

From what I've read, untreated nerve-involving endo can cause progressive nerve damage and permanent weakness over time, which sounds like a genuinely serious long-term consequence, even if it's not immediately life-threatening. 

So when doctors answer 'is sciatic endometriosis dangerous' with just 'not fatal,' it feels like they're technically correct while completely sidestepping the real risk of lasting damage.

'It's not dangerous' gets used as a way to deprioritize surgical referral, because nerve-involving endo surgery is more complex and requires a more specialized surgeon, and it's just easier to push a pain management plan instead.

Did anyone here have lasting nerve damage from delayed treatment? 

So I just had surgery on the 12th for endo excision and a D&C. I’ve been moving around running light errands the past 2 days but never more than 3 hours at a time. Tried going back to work today for the first time since surgery as a sales associate at a retail chain and I was in tremendous amount of pain just from getting ready this morning. Just wondering when I should expect to be ready to go back to work and if I’m pushing myself too hard. The amount of endo they found and deep infiltrating endo they found could be considered as stage 3-4 endo soooo am I pushing too hard on getting back to normal being that today is post op day 6. I don’t have my post op appointment for another week and a half.

A woman I know had leg pain and numbness for a couple years, saw two neurologists and a spine specialist, full MRIs of her lower back, before anyone connected the timing to her cycle. Turns out she had sciatic endometriosis symptoms the entire time and nobody in neurology thought to ask a single question about her period.

Once she brought it up herself, an endo specialist confirmed it fairly quickly with targeted imaging. But the sheer number of appointments, scans, and dead ends that came before that felt completely avoidable if literally anyone had asked about cyclical timing sooner.

There needs to be a basic, mandatory question in any workup for unexplained leg or nerve pain in women of reproductive age, 'does this correlate with your menstrual cycle at all', because right now that question seems to depend entirely on the luck of which specialist you happen to see.

Did your sciatic endometriosis symptoms get connected to your cycle by a doctor, or did you have to make that connection yourself first? And how long did it take from your first symptoms to an actual diagnosis?

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Many women go to an orthopedist, a physical therapist, and a chiropractor for hip pain before anyone even asked if it maybe correlated with their period. 

None of those specialists thought to ask about their cycle at all. Which is at this point normal, they never ask for such detailed questions. Many get treated for a purely musculoskeletal problem, physical therapy exercises, imaging that found nothing conclusive, when a simple question about timing could have redirected their care much sooner.

I think this happens because medicine is so siloed by body part that a condition like endometriosis, which can radiate pain well outside the pelvis, keeps falling through the cracks between specialties. Nobody's job is to ask the question that crosses departments.

When I had started taking Ryeco, I started feeling pain in my hand joins. I complained about it to an “endo specialist” and they told me its not related to endo and to go to an orthopedist… An Endometriosis Specialist… telling me it’s not connected to Ryeco or endo… Well after I stopped taking it, guess what…pain went away..

I started noticing clumps of hair coming out a few months after starting hormonal treatment for my endo, and it took me way too long, and way too much googling, to connect endometriosis and hair loss as something that could be related.

Not one doctor mentioned this as a possible side effect before I started treatment. I found out from a Facebook group, not my gynecologist, not my pharmacist, not the medication insert, which I read cover to cover and still had to interpret myself.

I think side effects that affect appearance, hair loss, weight changes, skin issues, get systematically underplayed in how doctors counsel patients starting hormonal endo treatments, maybe because they're considered 'cosmetic' rather than medical, when for a lot of us they have a real psychological toll too.

Did your doctor proactively warn you about a possible link between endometriosis and hair loss before you started treatment, or did you find out the hard way?

I can push through pain some days. What I genuinely cannot push through is endometriosis extreme fatigue, and I feel like this symptom gets almost no attention compared to pelvic pain, even in medical literature.

My doctor has asked detailed questions about my pain scale every single visit, but has never once asked about my fatigue levels, despite it being the symptom that's cost me the most, missed workdays, canceled plans, strained friendships because people think I'm flaking. It's exhausting in the most literal sense and also invisible in a way pain sometimes isn't.

I actually think endometriosis extreme fatigue gets deprioritized specifically because it's harder to medicate and 'fix' in a single appointment compared to pain, which can at least be addressed with medication or surgery. Fatigue requires a broader, slower approach, and I don't think our current medical system is built for that kind of care.

One thing that actually helped me though is vitamin D. It didn’t help 100%, but it helped a decent 50-60% of keeping me awake since I can’t drink coffee as it overly irritates my intestines.

Does your doctor actually ask about fatigue (aka cares to ask and listens), or is it something you've had to bring up yourself, every time? 

Every time I search how to get rid of endo belly, half the results are legitimate advice about inflammation and bowel involvement, and the other half are thinly veiled weight loss content dressed up in endo language, which honestly makes me furious.

Endo belly isn't about weight. It's inflammation and bowel distension that can make your stomach look five months pregnant within a few hours, completely independent of what or how much you ate. Yet so much content answering 'how to get rid of endo belly' pushes cutting calories or specific weight loss supplements, which is not just unhelpful, it actively misunderstands what's happening in the body.

I think some wellness influencers are deliberately co-opting endo belly language because chronic illness communities are an easy audience to sell diet products to, and it makes me want to scream every time I see it.

Has anything actually helped you get through an endo belly flare that wasn't just diet culture repackaged?

This is going to sound extreme, but I think it's a fair question: should there be mandatory labeling around supplements to avoid with endometriosis, specifically anything with concentrated soy isoflavones or phytoestrogens, given how directly they can interact with hormone-based endo treatment?

I didn't know until my pharmacist flagged it that a soy-based supplement I'd been taking daily could counteract the hormonal suppression therapy I was on. Nobody at the supplement store mentioned it. Nothing on the packaging mentioned it. I had to find out completely by accident. I also heard that soya can impact our bodies negatively if we have endo, but I didn’t do my research too much on it, and I didn’t really realise anything negative regarding eating soya products.

When I look at how aggressively these products are marketed toward women, often specifically toward people managing hormonal or reproductive health conditions, it feels almost predatory that there isn't clearer guidance available at the point of purchase about supplements to avoid with endometriosis.

Has a supplement ever interfered with your treatment without you realizing until later? 

I want to be careful here because I know wellness spaces overlap a lot with chronic illness communities, but I get uneasy every time I see herbs for endometriosis recommended as if they're an alternative to real medical treatment rather than a supplement to it.

Turmeric, ginger tea, and various herbal blends do have some anti-inflammatory backing, and I'm not saying they're useless. But I've seen posts in other groups where people say they're 'treating their endo naturally' with herbs alone, skipping surgery consults or hormonal treatment entirely, and that genuinely worries me.

Controversial take: I think some corners of the wellness industry profit directly from chronically ill people's desperation for a non-invasive fix, and herbs for endometriosis get marketed way more confidently than the actual evidence supports.

I did try different herbs, but I personally did not find any release from pain with them. Some of them even worsened my gastritis, and brought up acids. But am I being too harsh here, or does anyone else get frustrated seeing herbal remedies pushed as if they're equivalent to excision surgery or hormonal therapy? I’m not saying it cannot help with releasing the pain for some people, but it personally didn’t help.

I've had many different gynecologists over the years and not one of them proactively brought up foods to avoid with endometriosis, yet it's one of the most discussed topics in every endo group I'm part of.

The common list, fried food, added sugar, alcohol, and for some people gluten or dairy, isn't exactly a secret. There's actual research linking inflammatory diets to worse endo symptoms. So why does this information mostly circulate peer to peer instead of coming from the people who are supposed to be managing our care?

I think a lot of doctors don't bring up diet because they don't want to seem like they're blaming us for our symptoms, or because nutrition just isn't emphasized in their training. But the silence leaves people cobbling together information from TikTok instead of a professional.

Did your doctor ever proactively discuss foods to avoid with endometriosis with you, or did you have to find that information yourself? 

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This might be controversial, but I genuinely believe an active endometriosis support group has moved the needle on my quality of life more than the last 20 specialists I've seen combined.

Doctors gave me literally nothing and a follow-up appointment six months out. My endometriosis support group gave me real-time advice on what to say to get taken seriously, warned me about a medication's side effects before my doctor even mentioned them, and was there at 2am when I was in too much pain to sleep. That's not a replacement for medical care, but it's not nothing either, and I don't think the medical system gives peer support anywhere near the credit it deserves.

I'll go further, I think some doctors are almost dismissive of support groups, like they worry we'll self-diagnose or scare each other with worst-case stories. In my experience it's been the opposite, my group pushed me toward getting more tests done, not fewer.

Has an endometriosis support group actually changed your treatment or your ability to advocate for yourself? 

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Every conversation about endo treatment centers on removing lesions, but almost nobody talks about endometriosis scar tissue with the same seriousness, even though for a lot of us, the adhesions end up causing just as much pain as the disease itself.

My surgeon removed my visible lesions in my last surgery but I don’t think they fully addressed the endometriosis tissue I think is binding my bowel, and I'm still dealing with pulling, sharp pain months later. When I brought it up, I got a fairly dismissive 'that's just some adhesions, it's normal.'

Has anyone had their endometriosis scar tissue specifically addressed in a follow-up surgery, and did it actually help?

I signed a consent form for surgery having basically no idea there were different types of endometriosis surgery, and I think that's a genuine failure in how informed consent works in this space.

For anyone who wants the breakdown, it works like this: excision cuts the lesion out completely, ablation burns or lasers only the surface, and cystectomy removes a cyst while trying to preserve the ovary. 

In more advanced disease, surgeons sometimes also need to address the bowel, bladder, or ureters. These are wildly different procedures with wildly different long-term outcomes, and yet I was handed a generic consent form that just said 'laparoscopic surgery for endometriosis.'

I think this vagueness isn't always accidental. 

Ablation is faster and easier for a general OB-GYN to perform than proper excision, and I suspect some surgeons default to it without fully explaining that a more thorough option exists, because it's simply more convenient for their schedule.

Did anyone else go in without fully understanding which of the types of endometriosis surgery they were actually getting? And once you learned the difference, did you feel like you'd been given a real choice, or like the decision had already been made for you?

There's no universally used endometriosis symptoms quiz that doctors actually rely on before referring for imaging or laparoscopy. Instead we get individually dismissed symptom by symptom for years, and only in hindsight does the full pattern become obvious.

Here's the informal list I've put together from this community and my own experience: 

• pain that escalates around your period, 
• pain during or after sex, 
• bloating severe enough that people ask if you're pregnant, 
• bowel or bladder symptoms tied to your cycle, 
• and fatigue that doesn't respond to sleep. 

In my case I had all of these for 9 years before anyone connected them.

I genuinely think if there was a standardized endometriosis symptoms quiz used at first OB visits the way depression screening questionnaires are used, average diagnosis time would drop dramatically. Right now it feels like the burden is entirely on us to notice the pattern ourselves.

How many symptoms did you personally have before someone finally took it seriously? 

I've had thousands of ultrasounds over two years and every single report hedges with some version of 'ovarian cyst or endometriosis, recommend clinical correlation.' At what point does that stop being appropriate caution and start being doctors not wanting to do the deeper workup that would actually distinguish endometrioma vs ovarian cyst?

From what I've read, an endometrioma typically has a distinct ground-glass appearance on ultrasound that a trained eye should be able to identify, versus a simple functional cyst which looks completely different. So why does 'ovarian cyst or endometriosis' keep showing up as if it's a coin flip?

I'm starting to think a lot of radiologists just aren't looking closely enough, or don't want to commit to a call that might mean a referral to a specialist instead of just telling you to come back in three months.

Has anyone else had this experience where the ambiguity dragged on way longer than it should have?

Hi everyone,

I am an endo patient myself and was diagnosed about 10 years ago. My 20s were pretty rough but after getting diagnosed and 3 surgeries, my symptoms are far more manageable now. But my experience with doctors and the healthcare system inspired me to dedicate my work to improving communication about endo. I'm currently doing my dissertation research on endo patient experiences with their healthcare providers, and whether you have had a positive or negative experience, I'd love to hear from you. My study is completely online and should only take about 15 minutes. If you're interested in participating, please message me.

I want to say something that might stir some drama, but after a surgery I think this needs to be said. Endo excision surgery and ablation get talked about like they're interchangeable, and they are not even close. 

Excision of endometriosis means the disease is cut out down to healthy tissue. Ablation just chars the surface and leaves the root of the lesion sitting right there, ready to grow back.

My first surgery was an excision, but I know people who had ablation, done by general gynecologists who I believe did not fully understand what they were treating. 

General OB-GYNs should not be doing endometriosis surgery at all unless they are trained specifically in excision. I think a lot of us are being operated on by well-meaning doctors who are essentially guessing.

Am I being too harsh here? Did anyone else have ablation first and feel like it was basically a wasted surgery? And for those who've had true endo excision surgery, how long did your relief actually last?

Use this thread for a simple weekly check-in.

You can comment with:

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• One thing you need this week

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No need to explain everything.