Endometriosis on the spinal cord.

Women who live with this kind of nerve involvement often describe symptoms like:

Back pain that feels deep and strange, not like a pulled muscle. Electric pain, burning, a “hot wire” feeling. Pain, numbness, tingling, or weakness that travels into one leg or both legs. Some describe heaviness, stumbling, or a sense that the leg doesn’t belong to them during a flare.

And one of the most ignored symptoms are bladder or bowel changes. Needing to pee urgently, struggling to start, feeling numb, or feeling like the body isn’t listening. The kind of symptom that makes you sit in the bathroom thinking, “What is happening to me?”

In a few published medical cases, some women had episodes of sudden worsening, sometimes linked to bleeding within the spinal cord area. That caused yhem more severe symptoms, like difficulty walking or even partial paralysis. Again, this is rare, but it’s exactly why it matters to talk about it carefully and honestly.

Now I want to say something clearly, because I know how the internet can twist fear. Most women with endo will never have spinal cord involvement. Ever.

But those women who have nerve-related pain because endometriosis can involve pelvic nerves, the lumbosacral plexus, or the sciatic pathway, which can mimic spinal problems. That “mimic” is where misdiagnosis lives.

So how do doctors even investigate something like this?

First, they take your story seriously. The timing matters, the pattern matters, and the words you use matter. Especially if symptoms are catamenial, meaning linked to menstruation.

MRI is often used when doctors suspect nerve involvement, because it can show abnormal tissue, swelling, or bleeding.

But even MRI can miss things if the scan is focused on the wrong area or if the radiologist isn’t thinking about endo as a possibility.

And because this is rare, diagnosis is sometimes made only after surgery and tissue testing. That doesn’t mean everyone needs surgery. It means the medical world often needs “proof,” and women are the ones who suffer while proof is delayed.

Treatment depends on the situation, the severity, and what exactly is being affected.

In medical reports, management may involve hormonal suppression to reduce cyclical stimulation, pain control, and in certain cases surgery, especially if there are signs of spinal cord compression or progressive neurological problems.

When nerves are involved, timing matters. The longer a nerve is irritated, the higher the risk of lasting problems. This is why being dismissed is not just insulting. It can be harmful.

Here are red-flag symptoms that deserve urgent medical attention, no matter what you think the cause is:

• New weakness in a leg or both legs

• Trouble walking that is getting worse

• New numbness in the saddle area (inner thighs, groin)

• Loss of bladder or bowel control, or inability to pee

• Severe back pain with fever, fainting, or sudden neurological changes

PYou are not “overreacting” for taking those seriously. You are protecting your future self.

Living with strange nerve symptoms can make you feel unsafe in your own body. It can make you fear stairs. Fear long drives. Fear being alone. And the worst part is when people around you treat your fear as drama, instead of as a normal response to unpredictable pain and loss of control. If your nervous system is screaming, it is not a personality flaw. Fear is your brain trying to keep you alive. You deserve calm, skilled care, not blame.

Now please teach me, because your lived experience matters more than any medical paragraph I could ever read…

• Have you ever had nerve symptoms that worsen with your cycle, like leg numbness, weakness, burning pain, or bladder changes?

• Did anyone connect the timing to endometriosis, or were you left to connect the dots alone?

• What do you wish your partner, family, or doctor understood?

If you need a gentle place to feel validated when your symptoms feel too complicated to explain, my free 130+ page eBook “You Did Nothing To Deserve This!” was made for exactly that kind of night. It’s waiting for you. Just tap the link in my profile/bio.

Lucjan