01/07/2026
Endometriosis on the sacral plexus! 🧠🦵🎗️
GENTLE REMINDER: I’m a husband learning behind my wife, who lives with stage IV endo and fibro. This is not medical advice but my own research and a wish to understand. Please share your real-life experiences so I can write more accurately for the next woman. Your lived truth matters more than anything. Tell me what I get right or wrong so I can keep learning and spread better awareness. THANK YOU.
I’m writing this from the perspective of a man trying to make other men like me help women like you better. Not by “diagnosing” you from a screen, but by learning the patterns that get women dismissed, and then teaching other men to stop brushing it off as “just stress” or “just a bad back.”
The sacral plexus is a network of nerves deep in the pelvis, near the lower spine. It’s like a busy junction box that helps control feeling and movement in the hips, buttocks, pelvic floor, legs, and parts of the bladder and bowel.
When endometriosis grows near nerves, or wraps around them, it can cause pain that doesn’t feel like “typical period pain.” It can feel like electric pain, burning, stabbing, numbness, tingling, weakness, or a deep ache that makes you scared to move. And if that pain follows your cycle, even loosely, it deserves to be taken seriously.
The tricky part is that pelvic nerve endometriosis is rare overall, and that rarity becomes a weapon used against women.
A woman can say that her leg pain flares with my period and get told it’s a slipped disc, a pulled muscle, anxiety, or a bad posture.
But medical imaging reviews and case reports describe that the nerves most often affected in “neural endometriosis” are the sacral plexus and nearby pathways. In other words, the sacral plexus is not a silly idea. It’s a known location in the medical world, even if it’s not well-known in everyday clinics.
Many women describe it in a simple language:
• “It feels like lightning in my buttock.”
• “My hip locks and I can’t walk normally.”
• “I feel numb down one side.”
• “My leg goes weak around my period.”
• “I’m terrified because it doesn’t feel muscular.”
Some women also describe bladder and bowel symptoms that come and go with flares, which can feel humiliating and frightening, especially when nobody explains why it could be connected.
So what symptoms can happen when the sacral plexus or nearby pelvic nerves are involved?
Not everyone has the same story, but these patterns come up again and again in both medical descriptions and real women’s experiences:
• Deep buttock pain, often one-sided
• Hip pain that feels sharp or “inside the joint”
• Burning, tingling, pins-and-needles down the thigh, calf, or foot
• Numbness in the leg, pelvis, or pelvic floor
• Pain that worsens with sitting, climbing stairs, or walking
• Weakness, dragging the leg, or feeling unsteady during flares
• Pelvic pain plus nerve pain together, especially around periods
• Sometimes bladder or bowel symptoms during flares, like urgency, difficulty starting, or pain that feels nerve-related
One phrase doctors sometimes use is cyclical radicular pain. That just means nerve-root-type pain that flares around menstruation, but the sacral plexus can be involved even if the pain doesn’t travel in the exact classic sciatica line.
Now the big question... how is this diagnosed, when so many women are told their back scan is fine?
The first “test” is actually your story. Timing matters, pattern matters, and a fhe fact that it repeats matters. If symptoms consistently flare around bleeding, or around ovulation, or in the same window each cycle, that’s not you being dramatic. That’s your body leaving a trail.
Imaging can help, but it has to be the right imaging, with the right person reading it. Medical radiology papers describe MRI as the best tool for evaluating pelvic nerve involvement, because standard pelvic ultrasound often can’t see the lateral pelvic sidewall where these nerves run. But even MRI can miss it if the scan doesn’t include the right area, or if the radiologist isn’t looking specifically for endometriosis patterns on nerves.
This is why women say that their scans were normal until someone experienced looked. It isn’t that you were imagining it. It’s that the system wasn’t looking in the right way.
Treatment is not (as always) one-size-fits-all!
Endometriosis care often includes pain relief and hormonal approaches to reduce endo activity, because oestrogen tends to stimulate endo growth.
In England, where I'm based, some NHS patient information talks about how long-term pain can make the nervous system more reactive, and that certain medicines sometimes used for nerve pain can help calm pain signalling. That doesn’t mean your pain is “in your head.” It means your nervous system has been forced into survival mode.
When pelvic nerves are involved, specialist input matters, so surgery for nerve entrapment in carefully selected situations, is often done by advanced endometriosis teams, sometimes with a multidisciplinary approach, because nerves are very precious. They’re not something you want handled casually!
If your pain is nerve pain, pushing through it is not always brave. Sometimes it’s harmful, because nerves can be irritated and inflamed over time, and delays can matter. Not to scare you, but to validate why you’ve been desperate to be heard.
Here are some red flags I found that deserve urgent medical attention, regardless of the cause:
• New or worsening leg weakness
• Foot drop, stumbling, or suddenly struggling to walk
• New numbness in the saddle area (inner thighs/groin)
• New loss of bladder or bowel control, or being unable to p*e
• Rapidly worsening symptoms that feel neurological
You deserve safety, not shame. And if you’re reading this and thinking that this might be you, here are gentle steps that can help you advocate without becoming your own full-time doctor (although oftentimes you have to be):
• Track the pattern for one cycle. Just the basics such as the day of cycle, where the pain starts, where it travels, and what it stops you from doing.
• Use clear words for nerve pain: burning, tingling, numbness, electric, weakness. Those words matter!
• If you can, ask whether pelvic nerve involvement is being considered, especially if your symptoms are cyclical and your spine imaging doesn’t match your pain.
And please, if you’re exhausted, remember that being tired of fighting does not mean you’re giving up but it means that you’ve been strong for too long without enough help. I also want to speak to the emotional wound behind this because this is often missed...
Women with nerve symptoms often feel scared of their own body. Scared to plan, scared to commit, scared to travel, and scared to be alone during a flare.
And then someone says, “but you look fine”, that sentence has harmed so many women, including including my wife. If you look fine while you’re in pain, it’s because you’ve had to learn how to survive in public. You deserve a life that doesn’t require you to be a perfect performer just to be believed.
Now please help me learn, since it supposed to be rare (I'm not sure if it is), and because your lived experience is more valuable than any medical paragraph:
• Have you ever had buttock pain, hip pain, nerve pain down the leg, numbness, tingling, weakness, or pelvic floor symptoms that flare with your cycle?
• What did it feel like in your body, and what did you wish the people around you understood?
If you need a soft place to feel understood (especially on the nights you’re questioning your own reality), my free 130+ page eBook “You Did Nothing To Deserve This!” is there for you. It’s not a lecture. It’s validation. Just tap the link in my profile/bio when you’re ready.
Lucjan 🎗
