View Full Version : New to the board

04-06-2005, 04:58 PM
I have been reading the board for a few weeks now. I just registered today. I have not been diagnosed with lupus. I have had many health concerns which have been blown off by my doctors. I have no insurance anymore, so I resort to our county's "Rural Healthcare Clinic". My problems began as long ago as I remember. I have had "canker sores" my entire life which is normal in my family. Allergies and asthma began early. I have chronic ear and throat pain which has never been explained except that I produce to much earwax. I was diagnosed with IBS at 16. I developed pleuirisy at 17. I had a laparoscopy at 18 when I was diagnosed with endometriosis. I lost my insurance shortly after ( no longer covered on my mother's plan). I have been experiencing pain in my hands for about a year. I always joked that I must have arthritis. I have seen a chiropractic for back pain. My knees have recently started to bother me. I had rash on my face twice in the last two months, but it only lasted about 3 days both times. I associated it with 2.5% benzoyl peroxide creme that I haven't used in a few years. It never bothered me before. I have only recently been informed about lupus since I have developed a rash about 10 days ago after going to the beach(Florida sun exposure). It is not going away and new spots are popping up everyday. I also suffer from extreme nausea. The only meds I take is continuous birth control pills for the endo.

I am going to the doctor tomorrow, unfortunately they do not take appointments. Walk-ins only! I hope I do not have the same doc. Last time I went I told her how fatigued I felt and her reply was "I think you are depressed. Let's try some meds..." Before I could even continue with my concerns. I left the clinic in tears, probably confirming her depression theory. My boyfriend says it seems like "something is always wrong with me. Luckily he is very understanding and supportive (emotionally and financially.) Sometimes I don't think he really understands how I feel and I thought no one did, until I came across this site. Thank God!!!

I didn't see much about endo on this board. New theories are leaning toward it being an autoimmune disease. i was wondering if anyone else suffers from this as wellI appreciate any information or thoughts. Thank you.

04-07-2005, 07:08 AM
I too am in Florida. And not been fully diagnosed. And heard all the depression theories out there. Well heck, after being in pain and sick all the time who WOULDn't get depressed now and then ya know?
Welcome to the board. Wonderful people on here and soooo very supportive. My dh is supportive of me as well and helps when I let him ;) but no he doesn't "get" it. Unless you are living it then I don't think you can fully understand what it's like. Actually my dh is working full time and going through law enforcement cross over at night and he said the other day that he is beginning to understand just a little what I feel like being so fatigued all the time.
The thing in your post that really caught my eye was the endo. Same thing here. Had AWFUL af's from the time I was 12 until I was 26. My first lap. was done when I was 18 and I've had 6 more since then. Plus a total hysterectomy. I have since learned that part of my problem was the Lupus issues tho so the hyst. was NOT a cure all for me. I was lucky that I was able to have one amazing little boy before I had my hyst. tho so I am very thankful for that. :) There is a great site for people suffering in that area at www.hystersisters.com It is a site for hysterectomy support but also for all the other issues leading up to it and for finding alternatives to the hyst. You might find it interesting.
I hope you find some relief and a GOOD dr soon. {{HUG}}

04-10-2005, 06:38 AM
Hello and Welcome to our forum.
You mentioned endometriosis in your post. A new research has found that women with endometriosis (a leading cause of infertility in which tissue from the womb lining grows elsewhere in the body) are much more likely to suffer from rheumatoid arthritis, lupus, chronic fatigue syndrome, fibromyalgia and allergies.
The study was the first to document something that has been noticed by many women with the painful disorder. The researchers are urging doctors to look for the other diseases in women when diagnosing endometriosis, which afflicts between 8 percent and 10 percent of women of childbearing age.
The cause of endometriosis, as well as of the other diseases, remains unknown. The new research suggests an immune system abnormality, such as that in Lupus, is common in all these conditions. Research suggests that the malfunctioning of certain immune system chemicals called cytokines may be a common link in endometriosis and the other diseases.
Assuming that endometriosis occurs before the other diseases, it might be possible, one day, to spare women with endometriosis from developing some of the additional diseases.
The study, conducted by scientists at the U.S. National Institute of Child Health and Human Development, George Washington University and the Endometriosis Association, involved 3,680 women with endometriosis.
The scientists found that 20 percent of the women had more than one other disease. A third of the women who had other diseases had fibromyalgia or chronic fatigue syndrome, and some of those women also had other autoimmune or hormone diseases.
Chronic fatigue syndrome was more than 100 times more common than among the general U.S. female population.
You mentioned that your doctor said something about your thyroid. The research also found that hypothyroidism, which involves an underactive thyroid gland and causes mental and physical slowing, was seven times more common.
Fibromyalgia, which is characterized by widespread body pain and tiredness, was twice as common among the women with endometriosis.
Autoimmune inflammatory diseases ? systemic lupus, rheumatoid arthritis and multiple sclerosis ? also occurred more frequently than normal.
Rates of allergic conditions were higher, too. While allergies occur in 18 percent of U.S. women, they occurred in 61 percent of the women with endometriosis. The rate climbed even higher if the women had additional diseases. The study also confirmed previous findings that there is typically a 10-year gap between the time women first get the pelvic pain and the diagnosis of endometriosis.
The most common symptom of endometriosis is pain, especially excessive cramps during menstrual periods or pain during or after sex. Infertility occurs in about 30 to 40 percent of women with endometriosis.
Endometrial tissue outside the uterus responds to the menstrual cycle similarly to the way it responds in the uterus. At the end of every cycle, when hormones cause the uterus to shed its endometrial lining, endometrial tissue growing outside the uterus also breaks apart and bleeds.
However, unlike menstrual fluid from the womb, which is flushed from the body during menstrual periods, blood from the misplaced tissue has no place to go. Tissues surrounding the area of endometriosis may become inflamed or swollen. It is one of the most complex and least understood gynecological diseases and, despite many theories, the cause remains unknown.
One theory is that during menstruation some of the menstrual tissue backs up through the fallopian tubes into the abdomen, where it implants and grows.
So, your connection to endometriosis and your arthritic/lupus symptoms are not in your head...they are very real and should be taken seriously by your doctor.
Let me know if you need any further information!!
Peace and Blessings

04-18-2005, 06:21 PM
Thank you so much SaySusie & Tracy. Your infomation was very helpful. I'm sorry I took so long to thank you both. I have final exams coming up and I was feeling better, so I've been out trying to do things. My rash has finally started to go away the blisters are now pealing. I think I'm gonna have a few minor scars. I developed the rash on face again. It's awfully red and sometimes itches and burns. My stomach has been so messed up I don't think I'm keeping my BCP down, and it's messing with my hormones. I never went to see the doc the other day because I was feeling better. And now I'm not!

I haven't really told anyone of my suspicions of my condition. I don't want to trouble anyone. My boyfriend works 6 days a week from sun up to sun down. I know he's exhausted, so I don't feel like I should I have a right to expect any sympathy. Plus, he's in the middle of a custody battle with his ex. My mother is going through alot right now as well & that's it. I have no one else to talk to. I'm scared & it's really affecting me. I think I've freaked them both out because I'm not a good faker. They ask me what's wrong, when I can't come up with anything, they get frustrated. I'm sorry for the sob story, I know there are so many others experencing worse pain than mine. I'm having a really bad day.

04-19-2005, 08:03 AM
Chelle, first it's not a sob story. It's your life. I (and I think most of us) call it venting. Sometimes it really does help to get it out and talk to someone that understands. I think you really do need to get back into the dr and push for an answer. I'm one to talk cause I have been fighting the medical system in FL for 7 years now. I thankfully do have great insurance thanks to my dh's job (I work too but he's law enforcement so has much better coverage for less money :) ) and am just now starting to get somewhere on this rollercoaster. I feel like I've hung upside down for long enough. Time to get off this bad boy with some real answers. I think it would be good for you to tell your boyfriend and your mother what you feel is going on. I printed out a lot of info and gave it to all of mine. Whether they read it or not is up to them but you do need their support, and you have to be honest with them. As for not "deserving sympathy" from your boyfriend. It's not sympathy you need, it's understanding and support and if he loves you he'll give you that whether he works 6 days a week or 1 day a week. Yes he's probably tired, but so are we all. My own dh works 12 hour days on a rotating schedule plus is going to school full time. He's tired too but he still is understanding and supportive and helps me as much as he can. We also have a 6 year old little boy that is being raised to understand everyone is different and we all have different abilities. I want him to know that just because someone has an "ailment" doesn't mean they aren't capable ya know? Course last night he told me I never needed to leave the house again cause he wants me to feel better. :) Anyway, I got off on a tangent there and I am sorry. My point is you need people around you that care and will support you, especially now when you don't understand your body and what is happening, and maybe they can even help you get some answers. Sometimes having someone besides you to describe what they see helps the drs out. My dr anyway. ;)
{{{HUG}}} I really hope you feel better, and please go see your dr.

04-20-2005, 12:46 PM
Thank you for your support as well. I went to the Dr today anyhow and I'm feeling a little braver. (See other post)