Aa
FIXED & UPDATE :)
Hey all, it's been a LONG time since I've posted or visited - life happened :)
I'll spare all the back story - you can search for other posts I've created and find it!
It's been almost FOUR months WITHOUT a single flare up. Everything has HEALED and all I have is a scar from where my GM kept abcessing. But it's been quite interesting and I thought I'd share what a HUGE part of this is for me...
I gave up. I told my doctors I was done being a human guinea pig, it got to a point where I was just emotionally and physically DONE with trying - I had spent over 2 years of my life on antibiotics, steroids, random other medications, surgeries - I was done with allowing ALL the medication drain my body; I developed severe migraines from the meds and stress, along with stomach issues and a weak immune system. Luckily, my team of doctors are AMAZING and allowed me to taper off and quit; give my body some time to get itself back to healthy and give my mind time to go "live" (i'm in my mid 20's afterall).
Everything healed up. Not even a single flare up. The breast tissue redeveloped - I had a partial mastectomy and one couldn't tell because the GM was so flared that the tissues were chronically swollen. I now can easily tell I had a partial mastectomy (and I do plan on getting reconstruction). I still have chronic stomach problems, but it's lessening as time goes on.
About 8 weeks ago, I decided to go back onto birth control (Mirena IUD). Had it placed and within 2 weeks noticed the skin on my breast thinning (almost like tissue paper) and becoming translucent - one of the ways I knew my GM was going to flare up - I had a normal cycle with the IUD then started noticing my breast acting up again. I immediately was seen by my doctors (my breast doctor is in the same clinic as my OBGYN) and opted to have my IUD removed on the spot out of fear and just the sheer thought of having a hole open up again made me literally nauseated. I knew if the IUD stayed in place, this would eventually happen. Within a week of having it removed ALL of my GM symptoms vanished again.
I've always sworn that birth control/Mirena had something to do with my GM. It was in place for maybe a year or so before I developed the initial lump in my breast that was surgically removed - that never healed - I was diagnosed with GM about 6 months or so later. I eventually had my Mirena removed last year (medical reasons unassociated with my GM) and didn't use any birth control until I had one placed a couple months ago. I think the hormones triggered it and once it was there, I was on so many other medications and my body was so worn out and exhausted that it couldn't attempt to try to heal on it's own during the time I wasn't using the Mirena. I'm now convinced that birth control and/or the Mirena is the cause - atleast in my case.
My breast upon the removal of Mirena (again) is FINE. I'm on ZERO medication of ANY sort for my breast. Once in awhile my breast aches and there's a sharp twinge of pain that shoots through - probably tissues healing and nerve endings; been told it's okay and normal to have. Other than that nothing. All I'm left with is a couple years I won't get back, a lack of birth control (going to try the copper IUD that releases NO hormones), a scar and a deformed breast. I'll take all of that over returning to my GM pattern any day!
I'll spare all the back story - you can search for other posts I've created and find it!
It's been almost FOUR months WITHOUT a single flare up. Everything has HEALED and all I have is a scar from where my GM kept abcessing. But it's been quite interesting and I thought I'd share what a HUGE part of this is for me...
I gave up. I told my doctors I was done being a human guinea pig, it got to a point where I was just emotionally and physically DONE with trying - I had spent over 2 years of my life on antibiotics, steroids, random other medications, surgeries - I was done with allowing ALL the medication drain my body; I developed severe migraines from the meds and stress, along with stomach issues and a weak immune system. Luckily, my team of doctors are AMAZING and allowed me to taper off and quit; give my body some time to get itself back to healthy and give my mind time to go "live" (i'm in my mid 20's afterall).
Everything healed up. Not even a single flare up. The breast tissue redeveloped - I had a partial mastectomy and one couldn't tell because the GM was so flared that the tissues were chronically swollen. I now can easily tell I had a partial mastectomy (and I do plan on getting reconstruction). I still have chronic stomach problems, but it's lessening as time goes on.
About 8 weeks ago, I decided to go back onto birth control (Mirena IUD). Had it placed and within 2 weeks noticed the skin on my breast thinning (almost like tissue paper) and becoming translucent - one of the ways I knew my GM was going to flare up - I had a normal cycle with the IUD then started noticing my breast acting up again. I immediately was seen by my doctors (my breast doctor is in the same clinic as my OBGYN) and opted to have my IUD removed on the spot out of fear and just the sheer thought of having a hole open up again made me literally nauseated. I knew if the IUD stayed in place, this would eventually happen. Within a week of having it removed ALL of my GM symptoms vanished again.
I've always sworn that birth control/Mirena had something to do with my GM. It was in place for maybe a year or so before I developed the initial lump in my breast that was surgically removed - that never healed - I was diagnosed with GM about 6 months or so later. I eventually had my Mirena removed last year (medical reasons unassociated with my GM) and didn't use any birth control until I had one placed a couple months ago. I think the hormones triggered it and once it was there, I was on so many other medications and my body was so worn out and exhausted that it couldn't attempt to try to heal on it's own during the time I wasn't using the Mirena. I'm now convinced that birth control and/or the Mirena is the cause - atleast in my case.
My breast upon the removal of Mirena (again) is FINE. I'm on ZERO medication of ANY sort for my breast. Once in awhile my breast aches and there's a sharp twinge of pain that shoots through - probably tissues healing and nerve endings; been told it's okay and normal to have. Other than that nothing. All I'm left with is a couple years I won't get back, a lack of birth control (going to try the copper IUD that releases NO hormones), a scar and a deformed breast. I'll take all of that over returning to my GM pattern any day!
SORRY it's been such a DELAYED response!!!
UPDATE: unfortunately, it's back, however, not as you'd think! While my initial GM was in the right breast - that area STILL is clear - I found a lump that has been mimicked the initial lump I found three years ago in my LEFT breast several weeks ago. The spot is almost the exact same as in the right breast - due that i've had a partial mastectomy, i went in since i have nothing to compare it to - had a u/s done and my doctors decided NOT to proceed with a needle biopsy (based on my history of GM) and am on antibiotics which aren't helping. Again, it's not confirmed (nor denied) that it IS GM (my best bet, is that it is - the u/s shows a mass with a tract).
I'm due back within a month, where I've already mapped out for myself what I would like to see; surgery to remove the mass - another partial mastectomy - if that site heals and stays GM free for over a year (like the right side has) than reconstructive surgery. If it doesnt, double mastectomy. I'm in my mid 20's and refuse to spend another 3 years, let alone the rest of my life, a slave to antibiotics and living in anticipation of when GM will rear itself again.
And to answer yes my doctor was for weaning me off of all the medication. I believe you have to be pro-active as the patient in your own treatment while still being respectful of the professional :) It's a frustrating situation for all! I'm blessed enough to have a doctor on my side that admits not knowing just as much I and that respects my knowledge of my bodies limitations.
I think the hardest part for me was accepting that this is a condition that doesn't have a cure, and that unfortunately we're all human guinea pigs at this point. What works for one, might not for the next. And while I was getting fed up, so was my doctor - the best advice i have is to keep a rolling and honest, open dialogue with whomever you choose as your doctor. Your doctor should be willing, open, honest, and above all RESPECTFUL.
UPDATE: unfortunately, it's back, however, not as you'd think! While my initial GM was in the right breast - that area STILL is clear - I found a lump that has been mimicked the initial lump I found three years ago in my LEFT breast several weeks ago. The spot is almost the exact same as in the right breast - due that i've had a partial mastectomy, i went in since i have nothing to compare it to - had a u/s done and my doctors decided NOT to proceed with a needle biopsy (based on my history of GM) and am on antibiotics which aren't helping. Again, it's not confirmed (nor denied) that it IS GM (my best bet, is that it is - the u/s shows a mass with a tract).
I'm due back within a month, where I've already mapped out for myself what I would like to see; surgery to remove the mass - another partial mastectomy - if that site heals and stays GM free for over a year (like the right side has) than reconstructive surgery. If it doesnt, double mastectomy. I'm in my mid 20's and refuse to spend another 3 years, let alone the rest of my life, a slave to antibiotics and living in anticipation of when GM will rear itself again.
And to answer yes my doctor was for weaning me off of all the medication. I believe you have to be pro-active as the patient in your own treatment while still being respectful of the professional :) It's a frustrating situation for all! I'm blessed enough to have a doctor on my side that admits not knowing just as much I and that respects my knowledge of my bodies limitations.
I think the hardest part for me was accepting that this is a condition that doesn't have a cure, and that unfortunately we're all human guinea pigs at this point. What works for one, might not for the next. And while I was getting fed up, so was my doctor - the best advice i have is to keep a rolling and honest, open dialogue with whomever you choose as your doctor. Your doctor should be willing, open, honest, and above all RESPECTFUL.
I'm happy you are doing just fine!!! I just had a partial mastectomy 5 days ago and knowing that you are ok just bring some light at the end of my tunel. God Bless you
That is WONDERFUL news!!!! I haven't been on the forum in a long time either so I missed seeing this. I'm so happy for you.
I am so happy for you that you are doing better. I hope you have continued healing.
@37mom ill message u about how i dealt with the prednisone and how i care for my abcesses.
@37mom ill message u about how i dealt with the prednisone and how i care for my abcesses.
So HAPPY FOR YOU
how wonderful that you have figured out what was triggering your body to develop GM...
I wish you all of the success in the world moving forward
Thanks for sharing your story, it is very generous and hopefully will help others.
Best wishes, Jo
how wonderful that you have figured out what was triggering your body to develop GM...
I wish you all of the success in the world moving forward
Thanks for sharing your story, it is very generous and hopefully will help others.
Best wishes, Jo
So glad for you, and a little jealous. My journey with this just started in late June, early July.
Now I have an abscess that popped and seems to be getting deep. How did you handle this issue? It is getting me stressed, and my doctors keep saying wait until the underlying inflammation gets addressed (I am supposed to start Prednisone later this week, but afraid of the anxiety/jitters it can bring on - suffered from panic attacks looong ago).
Will appreciate any tips you can share on how to communicate with my physicians about taking me seriously when I suggest or ask about something regarding GM.
BTW, is Dr. Laya part of that group of doctors that allowed you to wean off everything? My rheumy does not seem to believe in anti-inflammatory diets or other changes - only believes in steroid treatment.
Now I have an abscess that popped and seems to be getting deep. How did you handle this issue? It is getting me stressed, and my doctors keep saying wait until the underlying inflammation gets addressed (I am supposed to start Prednisone later this week, but afraid of the anxiety/jitters it can bring on - suffered from panic attacks looong ago).
Will appreciate any tips you can share on how to communicate with my physicians about taking me seriously when I suggest or ask about something regarding GM.
BTW, is Dr. Laya part of that group of doctors that allowed you to wean off everything? My rheumy does not seem to believe in anti-inflammatory diets or other changes - only believes in steroid treatment.
I am sooo glad for you. It must be so comforting to know what caused yours. I have never used and IUD...so mine is something else. All our stories and bodies are different. My best to you as you move forward. Congrats!
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