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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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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
HERWriter Guide (reply to Ms.Re)

Hi Ms. Re

Thank you for your post and welcome!

I'm sorry you are going through so much with your diagnosis.

The first thing you can do is get a second opinion. I totally understand your reluctance to have a hysterectomy; not only does it bring on menopause and all it's symptoms but surgically imposed menopause is often harder to deal with, as well as obvious reproductive issues so take your time as you do have a lot to think about. 

From our Endometriosis page:

Treatment options depend on:

  • Severity of symptoms
  • Size, number, and location of growths
  • Degree of scarring
  • Extent of the disease
  • Age and whether you want to have a baby

Treatment includes:

Pain Medication

Your doctor may recommend:

  • Over-the-counter pain relievers to ease mild symptoms
  • Prescription pain relievers (often needed)
  • Nonsteroidal anti-inflammatory drugs to reduce inflammation and help with cramping (best when taken on a regular basis)

Hormonal Therapy

Hormones are an option for women who are not trying to become pregnant. Birth control pills and other injectable drugs interfere with estrogen production. These medications may decrease pain and shrink the size and number of endometrial growths.

But endometrial growth tends to come back when the hormones are stopped. A common way to take birth control pills is continuously, so that you no longer menstruate.


If you have severe symptoms or you want to get pregnant, doctors can try to remove endometrial growths. This is often done with laparoscopic surgery. In severe cases, it may be advised to also remove the uterus and ovaries . But this means that you cannot get pregnant.

You can read lots more here: http://www.empowher.com/condition/endometriosis

Ms. Re, I assume you haven't had any treatments at all yet so it's a good idea to talk about hormone therapy first (as mentioned above) as well as the other options. It may be the unfortunate case that a hysterectomy may be necessary but it's best to try every other option first.

Let me know what you think and good luck to you!



December 8, 2011 - 10:31am

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
HERWriter Guide (reply to Brokenhearted69)

Hi Brokenhearted

You should not be having considerable pain during sex - you need to discuss this with your doctor, as well as radiating pain.

There may be a simple answer or solution but please place a call to your doctor.

April 26, 2011 - 10:39am
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
HERWriter Guide (reply to Anonymous)

Hi Anon

Thanks for your post and welcome!

When did you have the hysterectomy? Was it recent? Were you in menopause before or did this surgery put you into menopause? If it's the latter, then that might explain some of your symptoms and stress could too.

When you say your symptoms are not new to you, did you mean to say they ARE new to you? If so, then you need to talk to a doctor and possibly get some testing done including blood tests to check your hormones (including thyroid) and also to check for any kind of arthritis or auto immune issue that could be causing your joint aches and other symptoms.


April 18, 2011 - 11:23am
EmpowHER Guest
Anonymous (reply to Susan Cody)

I had my hysterectomy last year. For years I have been dealing with reoccuring rashes on my left elbow and small of my back, left side. I have blurred vision, headaches, and most recently numbness in my left knee. I have had chest pain, dizziness and felt disoriented , anemic and feel naseus at times. i have more stress in my life right now, but this does not explain the years or dealing with these symptoms that come and go. Lately the blurred vision, headaches, nasea and numb left knee has been frequent. The rash on my elbow gest worse with time and cause pain in my left arm.

April 18, 2011 - 12:30pm
HERWriter Guide (reply to Anonymous)

Hi Anon

I think you need to see a doctor about this as soon as you can. Even though you have had these issues for years, their new frequency is quite alarming and continuous chest pain always requires a checkup. It's even possible the hysterectomy may have agitated your condition but they are so spread out and varied, it's impossible to say what may be wrong.

Will you put a call in to your doctor?

April 26, 2011 - 10:37am
(reply to Susan Cody)

Thank you for the advice/suggetsions. I had blood work done recently and all was fine, but I need to find an internal DR. to do a thourough check up. I have not had any syptoms lately, but will still follow up with a doctor's visit. Sure would like to get some answers, and less questionable looks from doctors. Will let you know if they figure this out.

May 20, 2011 - 8:03pm
HERWriter Guide (reply to blue67)

Hi blue67

I'm glad you are going to get checked out - let us know an update when you do.

May 23, 2011 - 12:38pm
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