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granulomatous mastitis Community
302 Members
Avatar universal

My story and where I'm at*

This is a letter I sent to a human interest reporting trying to start awareness of how gm affected me and effects all of us here....

**********
today I am writing to you the condensed version of my story and info regarding the forum and posts and what I am hoping to achieve.

I am 27, have a 2 1/2 year old daughter, and at the moment am a stay at home mom while I try to heal both mentally and physically.

Back in late 2009 I started having weird sensations and feeling in my left breast and having only had my daughter around a year at that point I considered what I was feeling to be my body going back to normal' as they say after u had a child. Around jan 2010 my husband found a lump in my left breast. I applied for medicaid ( mind you my guy wasn't working at the time- work was slow) and got denied, and spent the next cpl months looking for a program that handles free mammos and U/s to women of my position. I then found Komen for a cure and had my sister's surgical practice send down a referral from wva so that I could be taken care of. The results came back of a lump in my left breast and a cyst under my right one. The surgeon then sent a referral for me to see a specialist or well anyone really. I spent the next 7 months both re applying for medicaid, and walking into clinics from ruskin to tampa. From women's health groups, to walk ins, to community clinics, to charity financial clinics. I got turned away bc I either didn't meet their criteria, they didn't have a breast dr or specialist on hand, and one in particular turned me away bc I was below the nat'l poverty level at the time and didn't meet their charity regulations being so poor. I walked in to a er mid aug 2010 for intense crippling pain due to the lumps growth and a skin surface abcess that had formed on top of the lumps location. They aspirated the abscess and told me they could not treat or touch anything having to do with the lump bc it was underneath the skin. And when the abscess healed( it was nxt to my left nipple) my nipple started retracting and inverting.
I reapplied for medical assistance and continued to look for a dr.
By the end of oct I was in constant screaming pain and flew to wva to said surgical practice and had a cystal excision on my right and a biopsy removal with a titanium marker placed in my left. Where I finally found out the diagnosis of granulatomous mastitis.
Skip from nov to april and this is not filling you in on progression of symptoms or pain increase or how it affected my life.
After having nerve pain attacks that left me weak and shaking and the fact that I couldn't hold my daughter anymore- I knew something had to be done.

We drove back up to wva where I told the surgeon if he didn't do something I was either going to lose it or heaven forbid something worse-.....march 31st 2011 I had a dbl or bi lateral mastectomy and nipple removal where he removed a mass the size of a baseball attached to my left nipple, and when he went to do the excision of the nipple my left one busted. My right one was showing signs that the mastitis had spread and was starting to mimic the weird painful sensations that first started it all. He told me he was glad he had removed them both bc if not it only would have been a matter of time.
I had a jp drain on each side and 20 staples across each breast.
My guy of three years loves me so much that the day we had my drains removed we got married- chestless and nipple less- from dd's to nothing- he doesn't care.

Now as for networking and doing research there are no organizations, foundations, support groups, or anything out there. There is very little info to be found on any type of mastitis other than the type you get while breast feeding, and even that is lacking. The cancer groups aren't equipped to handle mastitis patients either emotionally physically or any supportive way.
The one website, one group, one forum I found consists of women all over the world and all at a loss as to why there is no help out there, period.
This is a mis diagnosed, mis treated, unrecognized disease that affects more and more women and doesn't age discriminate. People can't relate pain wise and how to treat pain management; insurances, health groups, medical facilities, and many other places don't recognize this as a diagnosis or know anything abt this.
From allergists, rhuematologists, wound care specialists, breast specialists, infectious disease specialists- no one knows how to handle or treat.

Please help me get this out there and let the area or nation know what I am trying to do by getting a non profit for mastitis and mastectomy patients set up and realized.

This is the link to my personal page where I have posts in the mastitis forum.

http://www.medhelp.org/personal_pages/show/2209022?personal_page_id=2209022

The one site that I found is medhelp.org and it has 74 members in the mastitis forum from all over the world. This is the only site, only group. The stories of red- noelle04- kiki- and many others will break your heart by their struggles.
I am an artist and have been painting and my works will be donated for sales and 80 percent to be donated in a charity acct that I have set up- to help set this up. We are a income restricted family and this is the only means I have of raising awareness that I can financially contribute to start this.

Thank you for your time-
9 Responses
Avatar universal
You can help me by giving me what's called your idc or dc codes- its normally a 3 digit number that starts with 6 whether its 610.1 or 675.
Its on your biopsy, surgery or patient papers....
I can use those codes to contact each state dept of health and human resources to get statistics of mastitis patients by state.....
For more info and what I am trying to do- please contact me- Peace and God Bless
Avatar universal
Hi August:

I think it is great that you have so much energy to devote to the GM awareness fight right now.

When I started this forum, in Jan 2010, it was true there were no other support groups in existence...at least that I know of, but we have created this and therefore this is an existing support group which I feel has and is providing support to a number of us.

There was not a wikipedia entry until I made the entry you have copied in to your last entry here.  I simply gathered what I thought was the clearest, albeit not comprehensive description and posted...I also included the link to the web site I have set-up, www.granulomatousmastitis.com, which is where I have linked this support site.  I have definitely noticed many more members finding us these days, so I feel good about these efforts.

We have approached the Registry for Rare Diseases to have GM listed.

I have personally written to every published researcher where an email is listed, and advised them of our group and asked for any assistance they might provide.  The few replies we have received have usually been good luck, but I am just a radiologist, pathologist, etc. and don't have expertise to assist your group.  I did have one American breast surgeon in talks to assist our group but that fell through due to legal and insurance logistics.

I have personally approached a Canadian group for young women with Breast Cancer to try to work together with them in raising awareness of IGM, however they felt their focus needed to be just BC, but I was successful in raising their awareness of the disease and our web site and other resources...

In short, there is a history to what we have accomplished with this disease in terms of awareness and care.  Truly the networking amongst doctors and communication of treatment options amongst caregivers and patients has probably been our biggest win - making sure other women don't go through the nightmare you and most of the rest of us here have gone through.

I think if we have a coordinated effort we will in the end be more successful.  There is a history on the forum of great ideas for progess and next steps from many of our members - areas we should focus on to try to achieve the goals of awareness in the medical community and better treatment for all with GM, and of course proper and speedy diagnosis.

Please let me know if you would be interested in working together with us to further the steps and progress we have already made...the women who have shared their stories here have all made this possible, we now have a great history of patient treatment experience to draw from and move forward with, and I think we have impacted care in a positive way as a result and spared some suffering.  Something every member of this forum should be proud of.

Jo
Avatar universal
Your words are amazing to me. They have such power behind them when you speak them, and thank you for all that you have done in your fight to raise awareness. Without you I'm sure some of what information I found wouldn't be there now. I would be more than happy to assist any way I can to help spread knowledge and get more awareness out there. My goal is to at some point set up a phone support line that can be called at any time, and a web page listing all this info that's been collected as well as what I've been collecting. I have found medical equipment facilities with donation closets for mastectomy patients and facilities that would help spread our information whether its pamphlets or word of local chapter support groups.
Anything I can do to channel my frustrations in a constructive way.
Thanks for everything. Contact me when u get a chance to see what I can do on my side of the world- God Bless
Avatar universal
You are an amazing woman! Thank you for putting so much effort into making GM known. Well I will look for the codes you requested and message you! Thank you so much for devoting time!
Avatar universal
Hello Jojo

I also want to thank you for creating this forum. I am so glad I found you ladies. It's been hard to explain to people what I am going through. Especially when they ask how I am doing and I tell them and they just dismiss what I said by saying it's all in your head.  I  know my own family is worried of course but they don't really comprehend all this. Well not many people do because of the lack on information. It's puzzling to most. It's not until you're in this position and dealing with GM. I have been dealing with GM for only a short amount of time but the symptoms were there of course before the lump was detected. Even in this short amount of time, it's been an emotional rollercoaster. Anyways, thank you for creating a forum that creates support for those lost and confused. It doesn't feel so lonely anymore!  :)

Kiki
Avatar universal
Hi all:

I am in the process of updating the web site www.granulomatousmastitis.com so would be happy to include any references or info you have, incorporate any ideas in to the site.

Just send me ideas and we can go from there.

I am moving in to to Wordpress format which has many more options than the current page designer I was using.

Jo
1729351 tn?1310057711
When will you have the site up and running? I'd like my doctor to take a look at it. I think he may help. Look him up on line. Dr. Robert Elliot and Dr. Mary Elliot. They practice at the "Elliot, Elliot, Head Breast Center in Baton Rouge, Louisiana. They specialize in Breast Cancer research. When I went in to see him, he said I was his 4th GM case in 40 years. I really think he would be interested in whatever info you can give him and vis-verser.
Thanks,
Tara
Avatar universal
Wondering how is your health now?  Please let me know if you have healed.
Oness
Avatar universal
Hi ONESS:

no not healed...:)

my spine is still severely inflamed...I have been undergoing some spinal injections or nerve blocks to try to relieve the pain, but I am not sure if we are making progress, to be honest it is overwhelmingly painful if I try to maintain any semblance of a normal lifestyle

I have chronic left sided pain (GM side), and really have just never felt right since GM...I know there are many other women feeling the same.

I wish someone knew why that is, how to get GM out of the body - I feel it is making my systemically ill and sometimes wonder if having a mastectomy would heal me.  As I write I have pain in my left breast, it comes and goes, and the masses (whatever they may be), move around but are ever present.  FRUSTRATING>

Anyway, I do my best to stay positive.  I follow all healing methods that are recommended and have adjusted my lifestyle to really try to facilitate healing....

SO thanks for asking, but this seems a chronic course for me unfortunately.

Jo
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