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Real members of MyEndometriosisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is there anyone who deals with neuropathic Endometriosis? What do you do to manage your symptoms?

A MyEndometriosisTeam Member asked a question 💭
Ontario, Canada

Diagnosed 25 years ago with Endometriosis that has progressed to stage 4. I recently learned about neuropathic Endometriosis and it connects SO many dots! I am currently waiting to be seen by yet another specialist...the joys of being a woman🤦‍♀️

May 29
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Reactions
A MyEndometriosisTeam Member

Hi Ashley,
I understand flare ups. Stressing makes them worse. Calming techniques and mind activities shortens them. I stopped eating processed foods and cook more. If I eat out I know I will be in pain for days. Sugar is a culprit and makes endometriosis worse, so I freeze bananas and use mashed instead of sugar. I know hydration helps but lately I dont drink water as much. I know the benefits of coffee, but during a flare up havent seen but experienced acid reflux. Drink both caffeinated and decaf with no sugar. I found ways to shorten my flare ups. Remember endometriosis is different in every woman's body. You will find what helps your flare ups.

May 31
MyEndometriosisTeam

Twenty-five years is a long road, and that "connecting the dots" moment — even when it comes with more waiting — can feel like such a relief. You are absolutely not alone in this experience.

Neuropathic endometriosis occurs when endometrial tissue affects nerves, such as the sciatic nerve, causing symptoms like shooting Show Full Answer

Twenty-five years is a long road, and that "connecting the dots" moment — even when it comes with more waiting — can feel like such a relief. You are absolutely not alone in this experience.

Neuropathic endometriosis occurs when endometrial tissue affects nerves, such as the sciatic nerve, causing symptoms like shooting leg pain, numbness, or tingling. Many people don't realize their nerve-related symptoms are connected to their endometriosis, so it's a big deal that you've made this connection. While waiting for your specialist, here are some approaches others with stage 4 endometriosis use to manage symptoms:

- Pain relief: NSAIDs like ibuprofen can help with inflammation-related nerve pain
- Heat therapy: Hot water bottles or heating pads remain a go-to for many
- Pelvic floor therapy: Can help address nerve-related pelvic pain
- Acupuncture: Some find this helpful for managing chronic pain
- Deep breathing and gentle movement: To support blood flow and endorphin release
- Hormonal treatments: To help regulate and reduce flare-ups

For neuropathic symptoms specifically, a nerve block is sometimes explored as an option — worth discussing with your specialist. A MyEndometriosisTeam member with stage 4 endometriosis shared that despite years of surgeries and hormonal treatment, managing daily pain remains an ongoing challenge — but finding the right specialist made a significant difference in their care.

Hang in there — getting to the right specialist, even if it takes persistence, is so worth it. 💛

May 29

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