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Post by akcheryl on Nov 28, 2006 18:54:32 GMT -5
I don't know if there has ever been a specific thread started on this... I'm just curious if everyone else has had other immune-system related diseases/conditions that may be somehow linked to endometriosis. I read an NIH news release ( www.nih.gov/news/pr/sep2002/nichd-26.htm) in which they detailed a study saying that: "Women who have endometriosis are more likely than other women to have disorders in which the immune system attacks the body's own tissues...The researchers also found that women with endometriosis are more likely to have chronic fatigue syndrome and to suffer from fibromyalgia syndrome — a disease involving pain in the muscles, tendons, and ligaments. Women with endometriosis are more likely to have asthma, allergies, and the skin condition eczema."The article also links endometriosis to diseases such as rheumatoid arthritis, hypothyroidism (and other endocrine diseases), Sjögren’s Syndrome, and MS. Personally, I have had: severe asthma my entire life (I've almost died from it a few times, been hospitalized for it countless times, and was in ICU once for a week because of an attack), I've had nasal surgery twice within the past year for chronic sinusitis and nasal polyps (removed from my ethmoid, maxillary, frontal AND sphenoid sinuses, which is quite rare), I have severe allergies to aspirin and anything containing aspirin or any other NSAIDs (the combination of nasal polyps, asthma and aspirin sensitivity is called Samter's Triad), eczema, migraines, other severe allergies (seasonal, dust, all grasses and trees, some foods, dander, and Sulfa drugs (which also cause anaphylaxis), hereditary angioedema (HAE) really bad, and fibromyalgia. I also have possible rheumatoid arthritis with positive rheumatoid factor; and every doctor I've been to for the past three years has suspected a thyroid condition (my thyroid is 2x normal size, I have heart palpitations and tachycardia, hypertension, my hair falls out in clumps, IBS-like symptoms, low-grade fever, fatigue, malaise, etc.), although my TSH has only been low enough one time to be diagnosed with subclinical hyperthyroidism. I have surgery in three days to remove large masses (which are probably chocolate cysts) - two very large ones on my left ovary and five on my right. Phew! No wonder I'm on Prozac! My mom has also had stage 4 endometriosis (she had to have her left ovary completely removed and her right ovary 1/ 2 removed), diabetes (an endocrine disease), fibromyalgia, arthritis, fatigue (chronic fatigue syndrome), malaise, eczema, and allergies. Has anyone else had all these problems? I thought that the NIH article was very interesting, as my mom and I (and probably a lot of you) have suffered with a myriad of problems our whole lives. It's interesting to know that all these problems are probably related.
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Post by erzulie on Nov 28, 2006 20:02:27 GMT -5
I made a thread sort of related, but it's not quite the same topic. Here is my thread if you're interested: cjlevett.proboards33.com/index.cgi?action=display&board=general&thread=1155332443&page=1What you are talking about is atuo-immune diseases, and actually I have read in a few places that endometriosis is related to auto-immune diseases and a lot of doctors wish to classify it as an auto-immune disease. I found this list in the book Endometriosis: The Complete Reference for Taking Charge of Your Health by Mary Lou Ballweg and the Endometriosis Association: Women with endometriosis are at high risk for autoimmune diseases. These include: · fibromyalgia (twice as common than in general population) · chronic fatigue syndrome · hypothyroidism (7 times more common) · lupus · Sjögrens’s syndrome · rheumatoid arthritis · multiple scleroisis · Allergies (61% of women with endometriosis) · Asthma (12%) · eczema
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Post by macymoo on Nov 29, 2006 8:09:21 GMT -5
Hi, I also have chronic fatigue syndrome (had it for 12 years way b4 I got diagnosed with endo) I also have hashimotos (antibodies that attack the thyroid)
I also have PCOS!!!!
Apart from that I'm fine:)
L x
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Post by ouchy on Nov 29, 2006 9:58:42 GMT -5
I have skin allergies, sinus allergies, asthma (after a bout w/ pneumonia), arthritis (from injury), migraines, HAD chronic fatigue, and I also have PCOS. ...Oh. and the catch-all "IBS." <--which is really just my endometriosis on my intestines!
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apple
Full Member
Posts: 214
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Post by apple on Nov 29, 2006 10:25:45 GMT -5
Hi, I never been diagnosed from any other serious condition than endo. To be diagnosed for endo took me close to 20 years. It took a while for doctors to take my symptoms seriously, and after 20 years of course my endo was quite bad. Anyway I have some other symptoms that make me suspect of having some of these illnesses that you are describing but I find that when I mention doctors about them they do not take it into consideration and they do not investigate further, ask for other test, etc. It took me a lot of work to get some info from my doctor to see if he thinks that I have PCO but his impression is that I don't and he is just basing this on his saying "women with endo usually ovulate just fine" etc..., So I am trying my best to rule out symptoms, like taking my basal temperature, etc... When I was a child a use to have allergies and sinus. Do you guys were diagnosed with this other diseases before or after been diagnose with endo? Did you find that your doctors where some how informed about the relations of this illnesses with endometriosis? I believe that since endo is such a complex illness there should be some kind of combine disciples that can test us and treat us since all seems related. Since on our own we have to see all these different specialists and I believe if they talk to each other and treat us a "whole" should be more helpful. But that is just my personal option based on my personal experience.
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Post by camille on Nov 29, 2006 10:43:29 GMT -5
I was diagnosed almost a year ago with Hashimoto's Thyroiditis. I was diagnosed with Endo almost a month ago now. It took over 15 years for a doctor to listen to me and order an ultrasound and then the laparoscopy. The diagnoses were unrelated but the diseases are. I have had terrible allergies/sinus problems my entire life and asthma that has been getting worse in the last year though is by no means life threatening. Thyroid disorders run in my family. My mother has an autoimmune disorder, I forget what hers is called, and she suffered from endo symptoms her whole life too, but was never diagnosed. Same with my grandma. Asthma, allergies, arthritis, psoriasis, and menstrual problems of all sorts are rampant on my mothers side of the family. I am sure it is all related. The doctor who diagnosed my thyroid disorder is also the one who ordered the ultrasound. She took one look at me and said you are puffy and pale. Lets find out whats going on with you. And every time I see her she says that. Finally a doctor who not only listened, but looked! (I've always been puffy and pale )
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Post by akcheryl on Nov 29, 2006 15:16:50 GMT -5
I started taking asthma meds as a very small child (before I can remember), and my asthma has always been severe. I was in 10th grade when I was in ICU for a week because of a bad attack (I'm 24 now), and I've been admitted to the hospital many times for asthma throughout my life. I can't go anywhere without my meds, and I use a nebulizer at home. I also have had pneumonia many, many times, and had chronic bronchitis as a child (from about age 5 to 15). I also take several different asthma meds (including sporatic rounds of prednisone), but despite taking Advair 500/50 (the highest strength), I still take my albuterol every day (which is a lot).
I've also had allergies my whole life. I'm very allergic to nickle (it causes blistering if it comes in contact with my skin). I'm also a 4+ with regards to all grasses, all trees, cats (dander), dust mites... I'm also deathly allergic to any sulfa drugs (any any topical ointments that contain sulfa, like neosporin, cause blistering and a bad rash that spreads and lasts for months). I'm also deathly allergic to aspirin and any foods that contain aspirin, including tartrazine (yellow #5), mint, apples, etc.; and any drugs that contain aspirin cause bad asthma attacks that put me in the hospital (like alka-seltzer, pepto, ibuprofen, aleve, advil, excedrine, ...) Aspirin-containing foods cause my nasal polyps to grow rampant.
I've also had eczema my whole life. It gets especially bad in dry air, and usually occurs on my hands, leg, and around my mouth.
Two years ago I found out that I have nasal polyps (I've had two surgeries in the past year to remove them and to clean out infected tissue from chronic sinusitis from every one of my paranasal sinuses) after I completely lost my sense of smell. Because of this, I suffer from almost constant sinus headaches, anosmia (loss of smell), and phantosmia (even though I cannot smell anything that's actually around - not even skunks or dirty diapers - I smell tobacco everywhere I go, even though I'm nowhere near it, and it's strong enough to make me sick).
Also, since 2000, I've had fibromyalgia but did not know what was causing my pain in my knees and back/neck + migraines and TMJ until about 7 or 8 weeks ago. I have constant pain, sometimes debilitating; and sometimes my TMJ acts up and I cannot close my mouth at all (I can't even force it shut with my hand). I had a positive rheumatoid factor a couple months ago and started seeing a rheumatologist for RA, at which time he also diagnosed me with fibromyalgia (which my mom also has). I had a follow-up appointment with my rheumatologist a few days after my ultrasound (at which time they found the large chocolate cysts on both ovaries) - when I told him about the endo he gave me a packet of information that talks about the connection between endo and fibromyalgia.
Also, in 2000 I started having symptoms of hereditary angioedema (although I didn't know that was what was causing my swelling until about 2002). My HAE eventually got bad enough that I'd have two or more body parts swell EVERY SINGLE DAY (which is very severe for HAE - lots of people get swellings once every couple weeks or even less). I was also hospitalized for the swellings a couple times, since it affects my skin, respiratory tract and my gastrointestinal tract (my stomach and intestines randomly swell).
I also started having my thyroid checked pretty regularly (by many different doctors) in about 2001 because of hair falling out, heart palpitations and hypertension & tachycardia (I take heart meds now), being super emotional, weight fluctuation, low-grade fever, fatigue, heat intolerance, enlarged thyroid, etc. A few months ago, back in July, my TSH was low and I was told I'm subclinical hyperthyroid.
It wasn't until very early November that my cysts were found and I was scheduled for a lap for very probable endo (I've got all the symtoms and my mom has had Stage 4 endo). So the endo stuff has been more recent than my other health issues. However, I have suspected endo since I was young, maybe 12, but never said anything to any doctors. I didn't say anything to anyone at all because I thought endo just caused heavy periods and bad cramping (which we know are only the tip of the iceberg) - had I known that it causes infertility, large cysts, scarring, etc, I would have gone to a doctor about it long ago.
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Post by rljslh on Nov 30, 2006 13:19:28 GMT -5
Well where do I start? You name it I got it! My husband along with a bunk of doctors think that I am crazy! (My husband is starting to understand a little more) A lot of my issues are connected to one another.
I have fibromyalgia. The doctors didn’t want to “PUT ME IN THAT BOX” but they had to because that is what I have. This is a painful thing and the bad thing is that there is nothing they can do for it. (Well I can take vitamins like zinc stuff like that, or exercise. But what I am trying to say that there is no cure!) Now because of this along comes Chronic fatigue. I have been tiered for so long! I can not remember a day when I truly felt awake! I am only 28 but I feel like I am 58! I guess when I exercise I feel a bit better but it is hard for me to get up and do it because I am so tiered. It is like a vicious cycle. I am dealing with this but it is hard. Every day is a struggle. I also have asthma this has cursed me for many years Every fall I end up in the hospital. Along with the Asthma I have had allergy issues.
For al long as I can remember I have had migraines. I would say that I have a headache at least 3-4 times a week. Some of them could be due to my allergies also.
Now to the women issues. There are tuns of problems here. Along with my endo (witch is very painful but you all know that!!) I have had cysts on my ovaries the size of apples (also very painful) Along with polyps and all that good stuff. I have had 3 Lap surgeries to take care of all this but the endo keeps coming back and worse then before. My husband and I have been trying to get PG for a few years now So that leads me the infertility issues. My husband and I are done trying things the easy way (by no means easy! I mean to say with out the help of Doctors) So we have an appointment in December. Well that is my story I am sorry to keep babbling on about my issues when I know that there is always someone out there worse off then me. Man just hearing myself talk about all the issues I have I sound like I am in sane!!! But thanks for listening. I was starting to wonder if I was the only one with endometriosis and all these other issues.
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Post by akcheryl on Nov 30, 2006 15:01:40 GMT -5
rljslh - Is there anything you've found that especially helps your fibro pain? I try exercising, but most of the time I feel like I'm running a marathon just getting out of bed and showering, let alone doing something like getting on a treadmill. I got put on Prozac recently, and I think it's starting to help (since it helps with serotonin levels). It also doesn't help that any physical activity gives me asthma attacks.
My mom read an article that suggested using a cough suppresant called Dylsem(? - it comes in an orange box) to help with fibro pain. I haven't tried it, but she said it kinda helps.
The only thing that really helps my migraines (which I have a few times a week) are ice packs on my neck (I think my fibro and TMJ contribute a lot to the headaches) and sleep. My physical therapist said to use ice packs. Unfortunately, since I'm so allergic to all NSAIDs/aspirin, the only thing I can take is Tylenol (or narcotics), which is rubbish!
I also can't take any beta-blockers for my heart problems because of my asthma, so instead I take diltiazem. It sucks especially, because ontop of my hypertension, depolarization causing palpitations (who knows why though - thyroid problems?), and tachycardia (my resting heart rate is about 100-120, even though I'm not overweight and I don't have high cholesterol), I've also had endocarditis.
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Post by normadesmnd on Dec 1, 2006 12:14:09 GMT -5
ladies, i don't have fibro pain. my stepmom does. she does water aerobics and gets deep tissue massages. she says both help her greatly. also, she no longer takes it, but she used to take trazadone. i think that's the name of it. it would help her with REM sleep. there's a theory i guess that REM sleep has something to do with it. perhaps those are things for you to look into. best wishes.
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Post by positivity on Dec 12, 2006 11:53:16 GMT -5
In addition to my Endo (which causes terrible digestion problems, painful intercourse, pelvic pain, etc) I have Barrets esophagus, ovarian cysts, generalized anxiety, and weird skin allergies from certain kinds of makeup. Plus I get sick a lot (flu's, colds, etc). Glad to hear I'm not the only freak out there!
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Post by cherry on Dec 13, 2006 18:24:59 GMT -5
I think in relation to others around me who have no specific medical conditions I am quite ok, I am very sensitive to whatever I take in, a lot of medications give me the worst side effects listed. I have stress eczema, react badly to anaesthetic, have a senstive tummy to some foods and get spotty if I have more than a little 'crappy' food in my diet such as carbonated soft drinks and ready meals. I don't mind this though cos it reminds me to take extra care of what I put into my body, and I feel really happy within myself right now cos I'm going back to eating very basic things and at the moment, I only take my vitamins, evening primrose oil and a stomach tablet to heal my tummy cos I damaged it with lots of NSAIDs. Ocassionally I take a voltarol but avoid it if possible!
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Post by garthsgal on Dec 19, 2006 21:42:35 GMT -5
hi Akcheryl, I,too, have similar issues as you. I have mild asthma, but I do have an allergic reaction to aspirin-not a pretty sight. I have allergies to willow trees, molds, grass, cats, dogs, oranges and corn. I'm trying to control the allergies with diet; also I try to keep away from the items I can. I wish you luck!
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Post by irishmuse on Dec 21, 2006 17:12:38 GMT -5
wow---it seems we're all falling apart!
I've always had allergies (dust, seasonal allergies, skin allergies and sensitivities, penicillin, sulpha, codeine and it's derivatives, etc), and women in my family suffer from something similar to fibromyalgia mixed with CFS (it starts with an "S", and my mom was just diagnosed with it, but I have all the same symptons, and plan to be tested for it after the fun endo testing is done), I have "gastrointestinal disorders" that the doc can't find a reason for, and migraines.
I find it interesting that these are all connected in some way.
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Post by scarlett on Jan 3, 2007 15:43:04 GMT -5
I have hypothyroidism (since 2000). Nothing else, but I can't help feeling it's connected to endo somehow.
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