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granulomatous mastitis Community
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Avatar universal

Survey

Some time ago I suggestes a survey. Below are some questions I thought of. If you copy/paste the questions, and then answer line by line (sort of like a forward), then we can all see the responses. If any knows of a doctor who would be interested in our results, share this forum with them. We need experts (as side from us) on our condition.

Stay positve and strong!

1. Which symptoms you experienced?
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage
Other:

2. When did IGM start for you?

3. How old were you when IGM began?

4. Did you have children?

5. Did you breastfeed?

6. How long did you breastfeed? (total months)

7. Did use a breast pump?

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Pathologist
Rheumatologist
Infectious Disease
Oncologist
Nutritionist
Other: ________________________

10. Did your doctor have experience with IGM?

11. Were you misdiagnosed?

12. Were you diagnosed with abscess?

13. Were you treated for abscess? Were you lanced/packed?

14. Were you diagnosed with cysts?

15. Did your labs return with “sterile” or “negative for bacteria” results?

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?

17. Did your doctor test prolactin levels?

18. Was your prolactin level…low, normal, high

19. What medication have you taken?

20. Did a medication cure your disease?

21. Did you have surgery?

22. What was the name of the surgery/procedure the doctor preformed?

23. Did you have a reoccurrence any time post-surgery?

24. Did you have imaging done?

25. Did you use a wound care vac?

26. Did a member of your medical care team make recommendations to change your diet?

27. If so, what changes were recommended?

28. Have you used natural remedies to manage your IGM?

29. Do you have other chronic diseases?

30. What is your nationality?

31. Is there anything else you would to share of your disease?
17 Responses
Avatar universal
1. Which symptoms you experienced? ALL LISTED
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage

2. When did IGM start for you?  AUGUST 2011

3. How old were you when IGM began?    34

4. Did you have children?   1

5. Did you breastfeed?   YES

6. How long did you breastfeed? (total months)    6 MONTHS

7. Did use a breast pump?   YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     5.5 YEARS

9. Select the doctors/services involved with your care.
Family Practice Doctor
Breast Specialist
Wound Care
Pathologist
Rheumatologist
Infectious Disease


10. Did your doctor have experience with IGM?  NO

11. Were you misdiagnosed?   YES

12. Were you diagnosed with abscess?   YES

13. Were you treated for abscess? Were you lanced/packed?  YES

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?   YES

17. Did your doctor test prolactin levels?   YES

18. Was your prolactin level…low, normal, high   NORMAL

19. What medication have you taken?  SEVERAL ANTIBOTICS, STEROIDS (20 WEEKS)

20. Did a medication cure your disease?  ANTIBOTICS - NO
STERIODS - YES AND NO - MASKED THE SYMPTONS, BUT PAIN FREE/REDUCE THE INFLAMMATION

21. Did you have surgery?   YES

22. What was the name of the surgery/procedure the doctor preformed?  ABCESS I & D

23. Did you have a reoccurrence any time post-surgery?  YES

24. Did you have imaging done? YES, ULTRASOUND, MAMMOGRAM & MRI

25. Did you use a wound care vac?  YES, DRAINED AND WAS HELPFUL

26. Did a member of your medical care team make recommendations to change your diet?   NO

27. If so, what changes were recommended? RESEARCHED FOR MYSELF.

28. Have you used natural remedies to manage your IGM?  ALOE VERA JUICE & POMEGRANATE CONCENTRATE

29. Do you have other chronic diseases?  NO

30. What is your nationality?  CANADIAN (LIVING IN USA)

31. Is there anything else you would to share of your disease?  LASTED 14 MONTHS. SCARS ARE SLOWLY HEALING.
Avatar universal
1. Which symptoms you experienced? ALL LISTED + JOINT PAIN AND NIGHT SWEATS.
Red streaks
Swelling
Inflammation
Pain
Redness
Lumps
Ruptured skin
Drainage

2. When did IGM start for you?  July 2012

3. How old were you when IGM began?    36

4. Did you have children?   1

5. Did you breastfeed?   YES

6. How long did you breastfeed? (total months)    8 MONTHS

7. Did use a breast pump?   YES

8. How many months/years after stopping breastfeeding did you experience your first symptoms of IGM?     3 YEARS

9. Select the doctors/services involved with your care.
Breast Specialist
Pathologist
Gynecologist

10. Did your doctor have experience with IGM?  NO

11. Were you misdiagnosed?   YES

12. Were you diagnosed with abscess?   YES

13. Were you treated for abscess? Were you lanced/packed?  NO

14. Were you diagnosed with cysts?  NO

15. Did your labs return with “sterile” or “negative for bacteria” results?  YES

16. Was the fluid draining diagnosed as serous fluid (healing protein fluid)?   YES

17. Did your doctor test prolactin levels?   YES

18. Was your prolactin level…low, normal, high   NORMAL

19. What medication have you taken?  SEVERAL ANTIBOTICS, STEROIDS (20 WEEKS)

20. Did a medication cure your disease?  ANTIBOTICS DIDN’T WORK
STERIODS - MASKED THE SYMPTONS…DIDN’T WORK.

21. Did you have surgery?   NO

22. What was the name of the surgery/procedure the doctor preformed?  N/A

23. Did you have a reoccurrence any time post-surgery?  N/A

24. Did you have imaging done? ULTRASOUND, MAMMOGRAM & MRI

25. Did you use a wound care vac?  YES

26. Did a member of your medical care team make recommendations to change your diet?   NO

27. If so, what changes were recommended? NONE, EXCEPT QUIT SMOKING

28. Have you used natural remedies to manage your IGM?  ALOE VERA FROM PLANT DIRECTLY IN MY BREAST/ BEE VENOM

29. Do you have other chronic diseases?  NO

30. What is your nationality?  URUGUAYAN (SOUTH AMERICA)

31. Is there anything else you would to share of your disease? I ALSO HAD JOINT PAIN, AND AFTER BEE VENOM IS GONE!

Avatar universal
May I ask why you ladies needed a wound care vac?  And who used it on you?  How many times did you use it?
Avatar universal
The wound care clinic I was seeing recommended the vac. I used the wound care vac for 3 weeks. It was on me for 24/7. I would need to visit the wound care clinc 3 times per week for a new sponge and changing the dressings.

It did promote healing after my surgery. My incision was 4 cm deep and 6 cm wide and the goal was to heal me up as fast as possible to prevent  more re-occurrences. It work when I was using it, but once I was done with it, the goop pockets showed up again.

Funny thing with a wound care vac is you sound like you are perkulating like a coffee pot. I hide my vac under a sweater, so no one new I had it. Seeing people looking around trying to figure out where the sound was coming from was funny. Just so humour with the disease. :)
Avatar universal
OOPS! my answer about the wound care vac should read NO! sorry! went over the rest of the answers and are OK.
Avatar universal
That made me laugh, thanks!  Ok I've never had an incision that big so I guess that's why I never used it. I will fill out this survey after I see my breast specialist and get diagnosed.  Thanks!
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