I have never heard of the combination of the two ever. I was diagnosed with endometriosis about 10 years ago and then diagnosed with lupus sle on may 11, 2005. I know nothing about the two being related, sure would be great to find out more! How are you doing? Now, were you diagnosed with lupus or just concerned? Can't wait to hear from you, gena

I'm 25 and i've had endo for about 10 years. Recently my endo has become severe and i'm facing infertility so my partner and I are trying for our family now.

Then I got a letter from the doctor to say after 2 negative tests, i've finally tested positive for lupus. I get aching feet, sometimes sore wrists, sensitivity to light, and of course the rash.
Not very pretty for a flight attendant...

Would be great to hear other experiences, particularly those of pregnancy with endo and lupus.

Kat :d

I have had endometriosis for as long as I have had my period. I have always had horrible, painful periods. I have even had lesions removed from my fingers and back. When I was 20 they told me that I would probably never be able to have kids. However, my husband and I were surprised by our first of three children when I was 24. During all three pregnancies my endometriosis went into remission, but during my first pregnancy I became really sick with other symptoms that seemed to get worse after I had my daughter and with each subsequent pregnancy.

It started with swollen joints, aches and pains, constant infections such as recurring step throat and pleurisy. I seemed to come down with every bug in the world and I would be wiped out for weeks at a time. I was finally diagnosed with lupus and mixed connective tissue disease last fall. I have been doing a lot of reading about all three conditions and it appears that there is a lot of evidence that they are related. Ironically, the only thing that has offered me any relief from the endometriosis was my pregnancies, and my first one is what most likely brought about the lupus. They say it lays dormant in your system and stressfull physical conditions can bring it out such as pregnancy. That is why so many wonen in our age group are diagnosed with it.

There is one more thing you should know if you are thinking about becoming pregnant while you have lupus. It can be transferred to the baby. My second daughter was born with neonatal lupus. It isn't the same thing as lupus sle and most children out grow it by the age of 2, but it causes rashes and scary high fevers at about 3 weeks. Since they did know I had lupus at the time they had know idea what was wrong with my daughter. She had to have a spinal tap on her 3 week birthday. I was never so scared in my life. She is three now and continues to get her fevers and rashes. She has had a seizure and developed a heart murmur from the fevers.


They are having problems treating my lupus now because I get so sick with the endometriosis, so I am going to have a hysterectomy. At least then I will only have the one thing to deal with. I am sick so often that I feel like a bad mother and wife. I feel like it has taken over my life.

I don't know if this will help anyone. I hope it does. There is a ton of information out there on the internet. Make sure you check it out.

Interesting. I am 28 years old and was diagnosed with lupus at the age of 26. I too had arthritis, skin involvement,leukopenia,severe fatigue,and severe anxiety/depression/insomnia. My rheumatologist told me the anxiety/depression was not caused by lupus but maybe became expressed because physically I was so exhausted. Anyway, I have had difficulty becoming pregnant and am having diagnostic laparoscopy this week to evaluate for endometriosis. All the symptoms certainly fit and since diagnosis with lupus my symptoms have seemed to progress. I would like to hear more about other women with this presentation.

Kendall

Specific tests on lupus would help here guys...

I was diagnosed with endo in 2006 had a complete hysterectomy 2007. I've not been pain free ever. I'm now being tested for Lupus as I have a positive ANA 1:640 w/speckled pattern. Because the docs can't find another normal lupus antibody like ss-a, ss-b,etc. they've tossed out lupus as a diagnosis. I have livedo reticularis all over,a light rash on my face,constant pain in my back, hips, legs, feet. Arms hand and facial pain. I'm unable to sit or stand longer than 15 minutes without increasing pain. It's horrable!!! I would be interested in which sub-tests done on you to signify lupus as a definitive diagnosis cuz my physicians are having a tough time.

While I'm still not 100% diagnosed with Lupus or Endo, I'm sure I have both. My ANA's have come back positive quite a few times, I do really well with prednisone (except for the weight gain).

However, I've been trying the new birth control that allows 4 periods a year. I just got my first period in 3 months and I feel horrible! I feel like I'm in a flare but there are other things like nausea and I'm soooo tired. I think that there is definately a link between the two diseases! I've been feeling great for the past 3 months with the birth control and have managed to lower my prednisone.. we'll see what the future of lupus/endometriosis brings...

Hi, I'm 50, was diagnosed with Lupus in '86, but is was disregarded as I had a negative T-cell (RA) that I know was false because my mom had a false negative for the
RA that showed on her x-rays. I was in constant, agonizing pain for almost 20 years until a caring WOMAN doctor finally diagnosed my ENDO. Nothing helped, and a coupls of years later, I had to have a hysterectomy. Dr. Ballard said it was the most agressive she had seen; my left ovary was adhered to my spinal column by endometrial tissue. At the same time, the lupus symptoms have never gone away. Lately, I've been having some of the old ENDO pain again. I don't have health insurance anymore, so I'll just have to deal. The one good thing to come out of this is knowing that my pain is not imaginary, it has a name. I also know that stress is a lit fuse to both conditions, and I can help myself by hiding out in my room. If anyone ever does a study on the link, I would like to participate.