All I can recall is being under a lot of stress AND having the worst episode of respiratory allergies around a couple of months before the lumps and breast pain started....
I think probably the horrible allergies must have triggered an inflammatory response in my body.
My first symptoms of GM were honestly when I found a lump in my breast... had it removed and the surgical site never healed... I honestly, deep down believe that something with my birth control started all of this... I'm actually working on a forum "update" and new conclusion to at least MY struggle with GM :)
Can someone answer this question: How do you know you have an abscess? Do you do self-check or use the mammogram results?
JoJo- My Thyroid test came back negative so I've continued to avoid soy products as much as I can which is very difficult since almost everything has soy including vitamins. There are a few multi-vitamins that do not have soy but you have to search hard. Also, Thanks for starting this forum!
To All - I've continued the American Heart ***. diet for sodium free diets, increased my fruit & veggie consumption by drinking smoothies almost everyday. I'm looking into the "Nutritarian Diet". It's basically just eating healthy by avoiding meats, fried foods, desserts, etc. Anyway, it's worth a shot in the dark. Does anyone want to join me in this effort to see if diet affects GM symptoms?
FYI - I'm 52 and I'm determined to "fight" this and I'm seeking control over this disease...I'm not going to let it overcome me by becoming depressed, etc.! To update some of you on my situation, I was diagnosed with IGM April 2010, had the excisional biopsy (left breast) in which the breast surgeon (who had never heard of IGM & dismissed me after the surgery....the jerk!) removed the IGM mass. I felt abandoned and that's when I found this forum which I'm eternally grateful for.
I finally found a doctor who was familiar with IGM! In a nutshell, since the IGM mass was removed I'm not on any meds., my new doctor (a female) wants to monitor my health every 6 months to do a sonogram and or mammogram, whatever. She told me to avoid soy and to not smoke (which I'm not a smoker). She said that if I came to her first she would not have done the surgery. Personally, I'm relieved that the mass was removed because that was when the second pathologist confirmed IGM. My new doctor said that she usually treats her IGM patients with prednisone and or other steriods and goes from there. Fortunately, I do have insurance but I do have co-payments that have been adding up and I guess I'll be paying for this the rest of my life.
Last Jan. '11 was my first IGM 6-month check up which consisted of a Breast MRI and a sonogram which was negative.
June 27th will be my second IGM 6-month check up. Now, my doctor ordered a "Diagnostic bilateral mammogram on the left breast". Then, I will get the results from my doctor after the mammogram. I'm keeping my fingers crossed!
Mum 2206- I thought it was interesting that you mentioned irregular periods because, I have very, very irregular periods and I keep a personal journal on my cycle. Thanks for bringing it up because I will share this with my doctor to see if it could be related to the IGM. Also, I have not been on birth control for years. My mother died of breast cancer over 30 years ago and I remember her telling me that she always suspected that birth control pills plus environmental factors was the cause of her B.C.
Everyone- Thanks for sharing all your thoughts, and comments. It helps me to compose a list of questions I'm going to ask my doctor on Monday.
Again, I'm keeping my fingers crossed, too!
It's amazing to hear that you just ran a marathon...what an accomplishment!
I haven't had a flare of IGM since 2008, but since it all begin, nothing has ever been the same. There are days where I just feel like I have th flu. I'm exhausted, sore like I've been hit by a truck, and everything just hurts. I get weird infections (eye, kidney, most recently in my wrist) for no reason. My doc diagnosed me with fibromyalgia, which I had never had before.
Ladies, there is hope! There is, there is, there is! I remember like yesterday being on the couch, cramped up in excruciating pain from the IGM, muscle and joint pain and an intestinal infection. I thought I was going to die. Yet last month, I ran a marathon!
Life goes on after IGM, I think. I know that there is other crap associated with it that I'm still dealing with, and hopefully someday, all that stuff will be recognized and we can get the real treatment we need. Until then, stay hopeful!
Soy products can work in a way that emulates estrogen, so I know there is some concern regarding soy and breast cancer. It's possible that it could have an influence here too.
I have been concerned about deoderant too...the metals keep your body from releasing toxins, which are normally excreted through your armpits. SO it makes sense that this could cause problems regarding breast health. I try not to use deoderant at all sometimes, unless I have to go somewhere. It grosses me out, but I figure if it's better for my health, I can do without. I have tried some of the natural versions, but they don't seem to work as well. PLUS, one of them, I was very exctied about....before I realized that it has lavendar oil in it, which can cause problems also. So...I quit that one too. I just take lots of showers now : )
I thought of another thing that I wanted to add to my list of possible causes:
7. At the time when this started, I was drinking about a glass of wine per day. After the lumps had gotten big, I would feel SO much pain and inflammation in the lumps immediately (maybe 10 min) after drinking the wine that it was obviously having a negative impact. I wondered if the alcohol contributed to the problem starting in the first place.
*I forgot to add... I was immunized for TB as an infant (born in Korea, standard practice)
On bloodwork etc it's determined I don't have TB but I'll always fail a TB test from the immunization... anyone else been exposed to TB?
I too, eat lots of soy product....wonder if it's that....
I also suspect on the deoderant I use, clincally secret brand. The one you wear over naught......
Now, I use all natural and aluminum free deoderant!
Unrelated to IGM but recently I've discovered that i can actually write such long essays even after school :))) hahahahahaha ... One good thing about IGM :)))) (otherwise errrrrrrr i hate it ....we all do :)))))
@Pandora- I totally agree on that anti-inflammatory diet... It does help to lead a healthy lifestyle by changing your diet especially if you are a meat eater. I have reduced my consumption of eggs, breads n chicken a lot though not compeltely but yeah may be once in 15 days :)) ....
@Frankie- i think you should go on with that blood test to know if anything else is happening around and yeah as Pandora mentioned GM is related to some auto immune disease... i had a lump excised 6 mths ago too and the area looks totally devasted as in an earthqake :) ... hormonal imbalance does play a major role in this i believe. I had never been on any kind of birth control but yeah highly stressed and i think that adds on to the hormones going haywire.
@Jo- so sorry to hear about your ongoing back pain ... How do you manage the pain otherwise.... Are you still on steroids???
@ruostentatious & barbardos- I think sometime earlier someone mentioning abt the IUD stuff .... But dont know how it is related coz i have never been on any birth control... I'm sure if someone is really doing a research on this horrible disease they'll able to figure out something once n for all ...
@eluriajen- i ditto on that left wrist and right knee pain , stress, lack of sleep (since 2006) thats ever since i delivered, that toxic feeling and lack of energry. Infact everything began with this bad wrist pain and I went on to see an Orthopedic thinking I had some bone problem but then he sent me to check for a thyroid problem. My thyroid scan did show something abnormal but no thyroid medicines were recommended. They had just put me on some meds for controlling my palpitations and dizziness I had then along with that wrist pain. It somehow ended that time but few months later a lump on the same side as my GM (right breast) appeared and was detected as a fibrodenoma after FNAC and ultrasound. Everything finished in 2009 only to see a bad abscess in October 2010 which i had to get biopsized. Only if they had diagonsed me earlier as IGM patient i would have skipped the surgery. My surgeon is a general surgeon and she suggested to go for the biopsy bcoz my mammogram showed BIRAD 3-4 lesion (which is suspicious cancer).
Even after the biopsy the pathology report mentioned it as Lymphocytic mastopathy (no clue what that is). I thought everything is over only to notice recurrent abscess since oct 2010. Thats when i approached a breast specialist which are so rare here in UAE and after a second opnion on those biopsy slides it was given a new name IGM. I was happy to see a new name to my disease atleast because i could find something on the internet :)) (not happy otherwise with this horrible disease). So here I am still with the same symptoms and no cure.
To add on to this the breast specialist didnt want to see me again bcoz i declined the steroids :((( ....
Thank you all for your replies.... I keep saying this but seriously I'm so happy to find this forum.. I atleast have someone to share whats going on with me and I don't feel like an alien. I feel much better and stronger (atleast mentally) to see so many suffering from this stuff and yet each one of you here is trying to fight thier own battle out. Hats off to all you ladies here and I pray to God to please find a definitive and guaranteed cure for this disease.
Things I think are/could be related:
1. I took ortho-tricyclen lo (the "mini pill") while I was breastfeeding
2. We had a water leak in our house that led to a weird and really scary mold that grew everywhere, all over everything in the house during the time that I was breastfeeding. I had a sever allergic reaction tot he mold.
3. I started using a tea tree oil shampoo and conditioner shortly before the first lump popped up.
4. Lack of sleep (I have a 3-year-old, and literally have not felt rested since she was born...I'm sure that some of you can relate to that). During the first several months, I could tell a huge difference in my pain and symptoms from day to day depending on how much I had slept the night before. To make this worse, I was experiencing a lot of insomnia at this time.
5. When this started, I was exercising a lot, but not eating very healthily. I was eating a lot of soy products; wondered if that may have played a role.
2. Joint pain, specifically in my R knee and L wrist
3. Swollen lymph nodes in the back of my neck and armpit on the affected side, and pain along the entire course of my lymphatic system in this area.
4. Extreme fatigue and exhaustion - sometimes this is better and sometimes it is worse.
5. The same "toxic" feeling that Jo has described having.
6. My symptoms do seem to fluctuate with my cycle.
7. My libido has been good overall; the most damaging thing for me in this area is that I feel like such a freak - like how could my husband think that my exploding boobs are sexy...and if he touches them I feel like wincing...that kind of thing. So not so much a physical problem, but emotional.
Anyway, hope some of this info helps. Good idea, Mum : )
Just reading your message on your symptoms - I too had a mirena coil. It was fitted when my daughter was 7 months and I started with my first symptom about 12 months later. Was wondering myself if it was coil related.
symptoms or triggers for my first encounter I believe were nothing... I was a healthy, active and fit young woman when I first had a lump.
Since then and having GM I've self decided that possibly my cycle and hormones triggered or aid to it...
The only "thing" i can think of is at the time I had an Mirena IUD.
Hey Frankie - good to hear from you. And glad to hear at least your GM is not flaring up.
I am tired all the time too. I have never felt well since the GM came my way...(sorry for the new ladies to hear this -- I think some people do return to 100% health though), anyway like you just not there.
I am no longer working and have nowhere near the strength or stamina I used to - I am in chronic pain with my back though so that is likely not helping, or my medications...
Hope your bloodwork comes up normal...
I think what you are describing is related since GM is supposed to be an autoimmune problem. On the other hand, it could be totally different. If you are already following a strict diet, you may want to check out the anti-inflamatory diet. It is different than the one you are on. No a lot of meat since meat is generally inflamatory, even chicken. However, it may give you some relief in the joints. With lots of fresh fruit and veggies, energy should be really good. I am too new on it to tell for sure, I need to learn the legumes etc...but I giving it a good girl scout try.
I'm the one that had the GM mass removed a year ago. Recently, I've had a good bill of health except that the last 6 months, I've been feeling very weak, drained of energy, sore joints, and the feeling of weakness is not going away. I eat very healthy and I've been following the American Heart Association Diet the last 3 years which is a low fat and very low sodium diet. I do manage to walk 4-5 days a week and I'm at a normal weight which is normal for my age. Is this all related to GM? Or, hormones? Does GM just flare up? I don't know but I'm determined to do some testing to find out if it's all related because I don't like feeling so tired all the time.
My doctor has ordered a blood test to see what's going on. Needless to say, otherwise my breast health is good just no energy.
You pretty much nailed it. I don't think I could add a thing. Every one of those were true for me, although my joint pain came after the GM started.