ask: Endometriosis as an autoimmune disease, more suspectible to other automimmune diseases? How do you find out if you have another automimmune disease?
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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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Hi Anon
Thanks for your question - you do seem to be experiencing more than your fair share of painful conditions. Being diagnosed with endometriosis at the age of 14 is very unusual - how old were you when you started getting periods?
Endometriosis has only relatively recently been considered an auto immune disease - some doctors still believe it is not necessarily so.
However, according to some studies, women with other auto immune conditions (like lupus) or thyroid problems or even MS are more likely to also have endometriosis and vice versa. Have you been tested for any of these conditions/in these areas?
When you say you have menopause, are you currently in menopause or have you completed it? How old are you?
You can read a little more about autoimmunity here: http://www.empowher.com/emotional-health/content/autoimmune-conditions-a...
If you can update me with some answers to my questions, I'd love to help you more; I'll look out for your reply!
Best,
June 9, 2010 - 12:07pmSusan
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I was diagnosed in my early 20's with endometriosis, started my period at age 14. I had all the symptoms of endometriosis when I was 14. I am 43, and have not had a period for over 2 years.I have been told by my gyn that I was in menopause and was started on hormone replacement therapy and my period started again, I have since stopped the HRT. I was tested for Lupus (blood test) and it was negative. Some of the other problems I have suffered from were allergies, they got so bad I was diagnosed with asthma. Just feel like ther is something going on, wish I knew what, so I could deal with it and prevent some of the problems....
June 9, 2010 - 1:37pmHi again, Anon
Thanks for the update!
Dizziness, loss of peripheral vision and blurred vision may be an indication of severe migraines. Are you feeling head pain along with with these symptoms?
Also, I'm glad to know you were tested for lupus (and the result was negative) but how about your thyroid? This can also cause dizziness, make your hormones completely out of sync and cause anxiety and depression. When was the last time you had a full check up of your thyroid?
Please update us when you can!
June 11, 2010 - 12:47pmSusan
I recently had a full blood work up, including my thyroid, all was fine. Sometimes I have headaches with the blurred vision. Tuesday I had a severe headache, joint pains that were so bad it was hard to walk, and vomitting. Not sure if this is a migraine or maybe dehydration??? I am feeling better, but my joints are still achy, seems like that does not go away, not always so severe thankfully...
June 11, 2010 - 3:45pmAnon,
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:
http://www.empowher.com/community/share/how-find-complementary-and-alter...
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:
http://www.naturopathic.org/
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 - 8:54amThank 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 - 3:41pmblue67,
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 - 8:31amI 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 - 4:27pmHi 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 - 6:11pmGlad 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