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Endo and pain management

Hey all,

I've been diagnosed with Endo for 6 years after two emerg trips with mysterious abdominal and pelvic pain that had no other identifiable medical reason. They ruled out appendicitis. Kidney stones. X ray, blood work, ultrasound, pelvic exam. All the fun stuff. I was referred to a local gyno that mentioned -- still -- that maybe the cause was kidney stones, but prescribed me BC to see if it would take my constant pain away. The pill didn't work, so I was switched to a depo Provera injection every 3 months. She said she was fairly confident it was endo once my pain went away with this treatment.

Since then I've been mostly pain free for about 4 years, but I've discovered that my pain is coming back earlier and earlier. Usually I'll have a week or two period where my pain will return and my injection date is nearing. Now it seems to be coming even earlier than that -- a month early.

Wondering how any of you deal with your endo pain and if you could share anything that has helped you? Do you take bc/hormone therapy? Does it work? Only sometimes? Whi has helped you manage your pain?

The pain can be so discouraging and isolating. Sometimes I feel like I'm not "doing enough" to keep it manageable. It feels like an uphill battle. If my injection stops working, my next likely step will be surgery.

  1. Hello , thanks for reaching out. In my case what works with my pain, and quite effectively, is a TENS unit, have you ever tried one? It is a small battery-operated gadget that delivers small electrical impulses through electrodes with adhesive pads. You attach them to the area causing pain. It was inexpensive but so great for when the pain is really bad. I’m adding a link with some info on these wee miracles.

    Also, keeping my inflammation levels low helps with my levels of discomfort. So, for the last few years I’ve been eating differently. Mostly plant-based, and avoiding gluten and sugar.

    With regards hormonal treatment, after my excision surgery, I was put on the pill-version of the depo-provera shot. I’ve been on it for 18 months now, and it has helped a lot with my period pain. My periods are either non-existent or very light. I still live with other symptoms like fatigue, nerve pain, migraines, etc. I don’t know how long I will be able to carry on with this particular pill, but it works for now.

    Please be kind to yourself. I believe you are doing everything you can to manage this disease, the tricky part is finding what works for us, and that takes a lot of time, trial and error, frustratingly. In the meantime, do reach out if you need anything from us, whether it’s answers, or just a good vent. We are here for you 😀 – Jessie (team member)

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