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Endo & epilepsy patient with questions Endo & epilepsy patient with questions

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Unread 01-07-2006, 03:46 PM
Endo & epilepsy patient with questions

I was diagnosed with Endo 5 years ago. I've had 4 laps and my right over out. But after each, the pain would come back. Every month, I spend a couple of days on the couch with the heating pad. Sex with my husband has become almost non-existant because of the pain. So, I've decided to have the surgery. I've never taken any of the meds for endo because I also have epilepsey. I've read that many people suffer from low back pain, as I do, but has anyone had upper back/shoulder pain? I've been to a chiropracter, my regular doctor, and a physical therapist, and I'm still in pain. My first thought is it is NOT related, but I'm going to mention it to my gyn....I've really enjoyed reading the posts. It helps to know I'm not in this alone.--Missy
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Unread 01-07-2006, 03:53 PM
Endo & epilepsy patient with questions

Best wishes to you Missy........Can't really answer our question, but just wanted to say Hi!!!!! Hope it all works out for you, and I am sure we will be happy with our decisions, once we recover!!! Best of luck!!!
Unread 01-09-2006, 12:08 PM
I had that

Wow, it's been a long time since I've been here on the board, so forgive me if I mess up replying to your post.

I had endo, stage 4 and had a hyster...ummm...3 years ago? (lol...I've forgotten! I think it's 4 years this April?)

Anyways, I had neck, shoulder pain (some of it was due to an injury) but the constant aching in my shoulder, well...that disappeared a few months after removing my last remaining ovary, right about the time the endo pain ALL finally left my poor body.

I don't know if it was endo related, but I never found our what caused the pain and I often wondered if it was endo related...and then following the last surgery I finally found releif. The pain never returned.

Hope you find an answer and some relief soon.

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Unread 01-09-2006, 10:43 PM
Endo & epilepsy patient with questions

Hi Missy,

You’re definitely not alone with your endo pain. I’m sorry you are hurting like this. Endo can be a puzzle, that’s for sure. Symptoms can vary depending on where your implants are and what nerves are involved, etc. It’s also common for pain to show up in areas away from the implants as referred pain. There are (rare) cases of endo being found outside the pelvis, in areas such as the lung. It can occasionally be found on the diaphragm too. Diaphragmatic endometriosis has been known to cause shoulder and back pain. It might be helpful for you to note whether your back & shoulder pain occurs continuously or seems related to your cycle. Ask your doctor about doing a thorough exploration for any signs of endo beyond the pelvis, including the upper abdomen & diaphragm, so you’ll know they at least checked. Those symptoms could be from a variety of problems & might not be related at all, but it’s worth asking about and having them look into it during your surgery.

Here’s a link to our Resource Section on Endometriosis

And here’s a link about Diaphragmatic Endo
I know how awful endo can be and I hope your pain is relieved soon.
Please let us know how you’re doing and what you find out, okay?

Gentle s,


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