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Endometriosis as an autoimmune disease, more suspectible to other automimmune diseases? How do you find out if you have another automimmune disease?

By Anonymous June 9, 2010 - 11:28am
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I have endometriosis, (since age 14) had mononucleosis as age 18 (severe) have had 2 laporoscopies, one cyst on left ovary, bouts with headaches, chest pain, blurred vision, loss of peripheal vision, vertigo, joint pains, menopause, irritability, dizziness, possible heart probelms, anemia and no answers!

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EmpowHER Guest

Endometriosis is not an autoimmune disease. It does not meet the criteria

May 15, 2017 - 5:33am

I was just diagnosed with Endometriosis stage IV, after having a d&c, diagnostic larparscopy and hysteroscopy. My symptoms are asymtomatic; but that has only been since this year. I feel perfectly fine, the only reason I had the 3-procedure surgery was due to in-between bleeding. I hadn't had deadly cramps in a few years and now that I feel fine from pain...this is what happens? The doctor told me my uterus/ovaries are enlarged and I have 3 Fibroids. My lab pictures were HORRIFIC! My doctor's first solution was to take everything out. I'm totally against that because women have dealt with Endometriosis for decades until menopause without having a hysterectomy. I was told after taking hormonal tests; that I was no where near menopause. He also wanted to put me on Lupron. If I'm not in menopause why would I want to be chemically shot into it, with all those side-effects. I'm at a lost, I don't know what to do. The doctor also suggested if I wanted to have another child IVF would be the way, because getting pregnant on my own with the Endometriosis would be like the odds of winning the PowerBall lottery. I'm at a lost. I'm so frustrated and utterly concerned. My husband is worried. I don't know what to do.

December 7, 2011 - 7:38pm

I had a laporoscopic hysterectomy 5 years ago at the age of 36 due to endometriosis. My dr. stated that there was a chance the tissue could also be attached to my bowel. I still have a considerable amount of pain during intercourse in my lower abdomen sometimes radiating into my diaphram. I also get what feel like menstral cramps. Could this be from leasions that could still be there?

April 18, 2011 - 5:06pm
EmpowHER Guest

I had a complete hysterectomy... Lately I have been suffering with headaches, blurred vision, nasuea, achy joint, numbness in left knee and stress. I recently started having a "crawly" sensation on my right hand, for a few days, but it has gone away. I have had a lot of stress in my life lately nut these symptoms are not new to me...

April 18, 2011 - 7:52am


I completely understand your feeling that there must be something systemic going on there that connects all these things. I think that's a normal reaction when someone deals with different medical conditions for years. We keep thinking we are missing something.

I too had endometriosis in my 20s and 30s, with two laparoscopies and with ovarian cysts. All that of course has gone away since I have been in menopause. I have experienced many perimenopausal and menopausal symptoms and conditions that sometimes seemed isolated but in reality probably weren't.

The key may be hormonal. So many of our body's systems and processes rely on our hormones -- whether they are our reproductive hormones, thyroid hormones, adrenal hormones etc. I am wondering if any of your doctors have checked all your levels to see if there is anything that raises a question?

I am most concerned with your vision issues (suddenly losing your peripheral vision, for instance), your dizziness/vertigo (I too have experienced this, and it's horrid) and your possible heart problems. Can you tell me if you feel these symptoms have been checked out completely by the right doctors?

You might be interested in seeing a naturopathic physician. Naturopathic physicians do have medical education (though not as long as conventional doctors). They specialize in evaluating and treating the body as a whole. They will work with your diet and nutrition, your exercise, your vitamins and supplements if they feel they can help you figure out what's going on. Here's a EmpowHer post about naturopathic physicians:


And here's a link to the American Association of Naturopathic Physicians, where you can put in your zip code and find those in your area:


I hope this helps some. I want you to get evaluated by someone who looks at you top to bottom, whether he or she is a conventional or naturopathic physician. Especially for the more serious of the conditions you're experiencing. OK?

June 11, 2010 - 8:54am
EmpowHER Guest
Anonymous (reply to Diane Porter)

Hi there, I'm 37 and have recently been diagnosed with Lupus and Endometriosis. I am sure there is a connection between the two. My symptoms started when I was 15, but the doctors didn't know what it was so I learned to live with the pain. It was only in the last 2 years, when I stopped taking the contraceptive pill, that things started to get worse. It started with lower back and hip pain, then abdominal pain, dizziness, fainting, elevated heart rate (racing heart), pain during intercourse, lots of urinary tract infections, migraines, depression and anxiety.

My doctor ordered all sorts of tests, I even had my heart checked. I was tested positive for Lupus SLE (ANA 1:2560), but my Rheumatologist said there must be more to this pain. A few months later I went to see a Gyno who suspected Endometriosis. When I recently had a laparoscopy, they found a lot of lesions and removed as much tissue as possible. I haven't had any back or hip pain since.

May 20, 2011 - 6:11pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Glad your back and hip pain is gone. Sorry to hear you had to live with the pain for so long and not know what was causing it. I understand how frustrating that can be. I wish I knew what was causing all these crazy symptoms. I was tested a few years ago for Lupus and other autoimmune diseases, they all came back negative. I was very relieved, but still walked away without any answers. I would just like some resolution to this, deal with it head on so maybe I could prevent or reduce the next "episode." I appreciate your comments, and wish you the best.

May 20, 2011 - 7:55pm
(reply to Diane Porter)

Thank you. I have been to many specialists for the more serious problems, but did get any answers, just larger bills. I am going to see an endometriosis specialist at the end of this month, not sure what he thinks about endmetriosis as an autoimmune disease. I would be willing to see a naturopathis physician. I am just looking for answers, so I can prevent these problems from reoccurring. I want to know if a hysterectomy is the best solution for my life and dealing with the endometriosis, want to look at all the options. Thank you for you concern and the great information. Take Care....

June 11, 2010 - 3:41pm
(reply to blue67)


You're so welcome. I'm glad you are going to see an endometriosis specialist at the end of the month, and I'll be very interested to see what you learn. If you are inquiring about hysterectomy, be sure to also ask what his thoughts are about the ovaries (whether to leave them in or take them out, since they are your primary source of reproductive hormones) and HRT (hormone replacement therapy) of any kind -- how or whether you should consider it. A hysterectomy, as you know, is a life-changer in many ways and I want you to have all the info before you make your decision.

Will you come back and update us after your appointment? And is there anything else we can research for you before that time?

June 14, 2010 - 8:31am
(reply to Diane Porter)

I was lucky enough to get my appointment moved up to this Thursday. I will let you know what I find out. I want to know if the Dr. believes endometriosis is an autoimmune disease, get all the information about a hysterectomy (full or partial) and what he recommends I do to find out what may be causing my other issues. i will keep you updates, until then I do not hink there is anything elseyou can research for me, but thank you for asking...

June 14, 2010 - 4:27pm
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