Endometriosis and Lupus

[sheila1366]

I have endo. and have been tested for lupus a few times(not dx.)Is this all part of an immune diosorder?

Sheila

[Lourie]

Sheila,
I can't really answer that question although at age 24 when my body went absolutely nutso I too had endo and it was so bad the cells that grow and scar tissue from the endo grew in myuterus and out side of my uterus into my back. They ended up giving me a hystorectomy a few months later and after few years I became really ill with blood clotts in my lungs,fibro,pneumonia, RA,pleurisy and now seizures which I hope are only stress induced. So I really think this is a good question. You probably will never know if there is a connection but if you do have lupus and were properly dx then I guess you can blame it on this horrible mean disease. As sick as I am now I save myself the trouble of getting into details and just tell people concerned I have lupus instead of trying to break it down. It's just all to confusing. Whatever happened to the flu? Wish I could just get that now and then and forget all this serious stuff. I would ask your doc and see what he/she thinks. People do get endo and that's the end of it. I certainly hope that's the case for you. I wish you all the luck and best of health. If you do get some answers on that question let me know I would be curious not something I have ever thought about. Just give me a personal message update. Again, goodluck and get better.
Lourie

[weedhopper]

I'm always interested in hearing info on this topic. I've also had severe endo since my late teens/early 20's. It was strongly suggested I have a hysterectomy, but I chose instead to change doctors to one who'd work with me to have children. I was abit surprised that the rheumy made a point to note I had this when he asked about the laperoscopies I have had. Then it was explained to me that some rhuemy's think there is a connection between endo. and autoimmunity. Mine being one. I don't remember today where or when it was, :wacko: but there was a long term study on women with severe chronic endometrosis and (unexpectedly) they found out that more of these women developed diseases like MS and lupus then the control with out endo. Therory being at the time, that maybe endo. is one of the "outside influence triggers" they talk about with the onset of lupus. That the endo. tissue planted outside the uterus reacts to our cycles just like the normal tissues and swells/engorges with blood. but unlike the normal tissue, isn't expelled so our immune system steps in and commonly causing scar tissue. This process recuring monthly over many years, may be what "tricks" the immune system into attacking the body. Take Care. :flowers:

[raggedyann1]

Hi,

I was told endometriosis is an Auto-immune disease. But that it was not caused by lupus or linked to lupus. Remember that most of us that post here are not the lupus "norm" so the fact that so many of us here have had endo is not true in general for the lupus population.

It is rare to have multiple auto-immune diseases. So it makes sense that the "complicated" cases end up active on a message board.

There is also the fact that they are still trying to find the hormonal link in Lupus and a few other CTD's that are primarily women. So at some point in the future there will be more "disease labels" than now and those with mult diseases will get a new name. :o

Take care,
Karen

[weedhopper]

I don't know how to insert links, but both the endometriosis assoc. and NIH have these articles on thier sites.

http://www.nih.gov/news/pr/sep2002/nichd-26.htm

and
http://www.endometriosisassn.org/inthenews.html


Hope everyone's having a good day.

[Deborah Rumbles]

:nurse: Hi I also have Endometriosis and systemic lupus erythematosus,There is a definate link (I have studied Genetics) to all auto immune diseases and it is very common to have numerous auto immune diseases together,people that have auto immune diseases have a problem with their CYTOKINES immune system chemicals.Our DNA make our antibodies attack our own tissue types, so all areas of our bodies can be under attack,this is why systemic lupus is called systemicIt effects any system in our body. And their is a definate friendship with Lupus and Endometriosis unfortunately, they seem to go together very well, Deborah :erm:

[raggedyann1]

Deborah,

My first attempt in a reply got lost, so this will probably be shorter.

I am very interested to learn where the research is that shows people who have auto-immune diseases, have more than one most of the time? And where the link btwn all of them has be documented?

I know that they are still looking for the link btwn hormones and genetics to lupus and other A-I diseases. I also have learned in the past that most women with lupus do not have other A-I diseases, that most of them only have lupus and are able to continue living active lives.

I also have learned in my searching thru the web and reading publications from top rheumatologists that the multiple diseases I have are very rare with lupus.
Lupus and RA occur less than 4% and Lupus and Scleroderma are less than 5%, i have no idea how rare to hav all 3 which I do.

It is perhaps certain A-I diseases frequently create multiples?

Curious as always,
Karen

[le00715]

:wiggle: i am new to this site but you guys raise some interesting points.
I struggled with endo for years, in fact 9 surgeries in 4 years, the last being a full hysterectomy in 2000, just a year after gall bladder removal while 5 months pregnant with my second boy. i was lucky in the fact that i had a great OB that to me for 7 years was a God and helped me to deliver 2 beautiful boys during all the health problems i faced on a continuous basis. About 15 months after my hysterectomy I really noticed things weren't right and started the million doctor visits to a million different doctors. It took a while, like most, to finially get a diagnosis. It has only been a year since. I strongly believe that there is a definate link between the two.

[Pickles]

Hey,

I also had endo when I was 39.. I never did get pregnant, always having female problems. I had endo and fibroid tumors and ovarian cysts. I had a laparoscopy and they got it all and put me on Synarel which put me in temporary menopause. I had to take that for 6 months. A year later everything came back with a vengeance. I would not wish that on anyone, the absolute worst pain I've ever had. He did a hysterectomy which I was oh so thankful for. He told me he could leave one ovary but he would probably have to come back in a year and take that out so I told him to do a complete one. A year later, I had gallbladder taken out(gallstones)I've heard that is common after hysterectomy. A year after that I was in hospital for severe dehydration and diarrhea, a year after that I had a bad car wreck. After that, I almost had a complete nervous breakdown, if it wasn't for Prozac, I would have. I have also had 2 episodes of Shingles which you don't want either.

I am now 55, I was dx with RA, then Lupus in 1999. Then everything else. I really think I've had some of them longer but no one could figure out what was wrong with me. I was told it was nerves or I was imagining things.

If you look below at my signature, you will see that I have several AI diseases. I was told that they can come in multiples. Now, Whether endo started this whole mess or not, I don't know. I was also under LOTs and LOTS of stress at the time, I've heard that can cause AI diseases too. I don't think anyone really knows.

[karol]

i cant believe this...raeding these sites is such a thereapy for me..thank you.. i have suffered since 18 with female problem, cyst endometiosis.. i have had probably 7 surgeries..still have my female organs im 40yrs old.. i have had 2 miscarriages.. ive given up on having kids.. i had problems with gallbladder and had it have it removed 7 yrs ago.. is this all related to lupus?

[raggedyann1]

Karol,

It is not exactly related to lupus. Researchers are still working on the whole hormonal link to lupus and other CTD's. Endometriosis is an auto-immune disease so that puts it in the same group as lupus. However there are no statistics on whether women with lupus have a higher likely hood of also having endometriosis. At least none that I have found.

Your miscarriages are more significant. They are one of the criteria for a diagnosis of the Lupus Anti-coagulant called APS or Hughes Syndrome or Sticky blood. You can have APS with lupus or without.

What other symptoms aer you having? Do you have a doctor running tests for lupus for you? Getting a lupus diagnosis can be easy for some and tricky and long drwn out for otheres.

Take a moment and read the lupus criteria and symptoms in the not yet diagnosed forum. You will find it at the top. Read the entire post as it has some alternative criteria as well.

Take care,
Karen

[christinapoem]

ok..I actually mistakenly ended up in this topic and fell upon this page!!!! This is extremely interesting to me as well. My sister has either RA or Lupus (dx RA at 17 she is now 34 looks more like Lupus). When I was 32 after my third child my endometriosis was dx but considered "controllable" It became worse by the month and almost two years ago I had to get a hystoretomy. This was supposed to leave ovary but endo was so bad that all was taken via lapro hysto. In the meantime, my ureter was cut duting hysto (severed not nicked by "mistake"). And kidney backed up for a while requiring bags. This took a 4 months and a major surgury to fix. after I "recovered". The first "flare" began. It was like clockwork... my neuro muscular system, my teeth and mouth became inflamed and infecte, two months later bouts of pericarditis, then onset of asthma, then more pericardidts, Raynoids, then hair joint pain and the fatigue increasing, hair falling out by the ton, and then more recently partial complex seizures. I was recently dx with hypothyroidism and thought that was the whole thing..but after 5 days of sythroid..which helps a lot with daily fatigue, other symtoms came right back. All the clinical symptoms point to Lupus - as do family genetics..of course blood work is being very slow in cooperating! I get so cofused and often wondered about the endo and hysto being a triger. I have not gone to a Rummy yet because they are like the wizard of Oz when it comes to getting an appoitment..I keep getting hosptialized or sent to other specialist and they ALL tell me to see a Rummy and then I ask them to get me in..and they give me a few names or say "we have none that come here to this hospital" . The appointments are 3 months away. Then I get sick again. The ONLY Rummy I saw was in the very begining. right after the first pericarditis who said it was menopause after hysto. When reminded him I was on hormone replacement and I felt this was a bit more than typical menapause...he sort of said "well you are right...go see a Rummy closer to where you live and wait to see if you get worse". OK..I went off topic..but my whole experience was so tied into endometriosis. I found it very interesting what the one person who studied genetics wrote about having more than one auto ammouine disease at a time. I thought that was true too. I get so confused about how all that fits. I just want to be treated already!!!! :angry:

well thanks for all being here and allowing the vent....and this was a great topic to fall upon

[karol]

:hello: hello all, karen thanks for your reply.i have been under the care of rheumologist for 2 years.doctor dx uctd.. he feels that my symptoms and blood work are early stages of lupus.. although i do have a positive rheumatoid factor that keeps occurring off and on in blood work.. he has said that sometimes this can be a condition kown as rupus..he states that dx uctd is a dx that will allow him to treat for symptoms of lupuswithout putting dx of lupus at this time. diagnoses is not easy for these diseases as you well know.. i would be very leary of any doctor that diagnoses anyone right away with lupus.. it really requires monthly bloodwork and monitoing your symptoms.. anyway my syptoms have been major joint involvement.. joint pain,, occasional fever with flareup.. fatigue is a real problem with me.. reoccurring sores in my nose sometimes in mouth.. in winter monthes i experience discoloration of my fingers.. they turn red and white.. my ears will turn flaming hot red for no reason.. sometimes only 1 will turn red..i did have some high proteins in my urine .. dr. took me of nsaids at the point and put me on ultracet for pain..since the i use nsaid very spareingly.. i have recently had some sensitivity to sun light. broke out in rash while in florida.. i love being out doors fishing on my boat.. this is a tough one for me.. i also have developed a funny looking bump on my hand.. dermatologist calls it my flare site . had it biopsied and it came back as being related to disease process.. this bump becomes very red and raised when i m having a flare up in my joint.. if i take prednisone it responds very well ,redness subsides.. its bizarre..my main joints affected are my wrist ,finger ankles, when really flaring i hurt all over my body.. shoulder kness and even in my jaw... i am on 15mg of methotrexate,,folic acid,ultracet,arthotec ,,lunesta for sleep,, and provigil for energy..which is use very little..too much like taking diet pill.. dont like it.. my doctor has been very reluctant to officially diagnose me with lupus also for insurance purposes.. which honestly i appreciate that.. i am single and solely support myself.. i have great insurance now but if i switched job i wuldnt want that hanging over my head.. i dont know how long before he has to dx me with lupus or ra or what ever this is .. i really dont care about dx.. my grandmother had sle.. she passed away from complications of sle in the mid 70's.. back then they only treated with high doses of steroid.. thank god medicine has come along way.. she was 48.. there is defintly a genetic link in my family..i just trust god first.. i trust my doctor.. i see him evry month.. he runs labs every months,bonedensity test evry year. xrays my joints 1 year.. i just try and have faith..thank god for the good days and rest on the bad ones.. god bless you karen..and all my other lupus site friends....

[raggedyann1]

Karol,

I just want to clarify that lupus is easy to diagnose under the right circumstances so it is possible to get a lupus dx on your first visit or second visit with a rheumatologist. But other times it can take years for the lupus to fully develop and be treated. I am glad that your doctor is treating you as that really is the important thing in the long run. IMHO

Karen