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Anyone else in the UK with IGM?
Hi, I have just been diagnosed with IGM and would like to link in with others who have the condition to share experiences, get and give support, discuss treatment options etc.
Very briefly my problems started in Feb 15, when I developed a fever and hugely inflamed very sore left Breast.
I was given 2 courses of antibiotics which did not improve things so I was referred to the hospital.
I was initially diagnosed with Inflammatory Breat Cancer but after mammogram, ultrasound and biopsy this was eventually ruled out.
Then told I had an infection called Conyrebacterium and put on Doxycycline. By this stage I had wounds relating to the site of the biopsy, and a very sore over granulated wound where an abcess had burst. I have recently developed another abcess which has also burst. I pushed for doctors to speak to other medical colleagues outside of my smallish town and have now 4 months later finally got a diagnosis of IGM.
I would love to hear from other when unfortunate enough to be in the IGM club. Please come and talk to me about your experience. One of the worst things about this so far is the lack of information and/ or support and I would really like to link in with others to offer and get support as I go through treatment.
thanks, hope to hear from someone soon!
Ps I am 42, live in the UK, married with 2 lovely kids :-)
Very briefly my problems started in Feb 15, when I developed a fever and hugely inflamed very sore left Breast.
I was given 2 courses of antibiotics which did not improve things so I was referred to the hospital.
I was initially diagnosed with Inflammatory Breat Cancer but after mammogram, ultrasound and biopsy this was eventually ruled out.
Then told I had an infection called Conyrebacterium and put on Doxycycline. By this stage I had wounds relating to the site of the biopsy, and a very sore over granulated wound where an abcess had burst. I have recently developed another abcess which has also burst. I pushed for doctors to speak to other medical colleagues outside of my smallish town and have now 4 months later finally got a diagnosis of IGM.
I would love to hear from other when unfortunate enough to be in the IGM club. Please come and talk to me about your experience. One of the worst things about this so far is the lack of information and/ or support and I would really like to link in with others to offer and get support as I go through treatment.
thanks, hope to hear from someone soon!
Ps I am 42, live in the UK, married with 2 lovely kids :-)
I'm in the UK and a member of the IGM club. Problems started in January 2015, I've been on numerous courses of antibiotics (6 varieties in total) plus undergone surgeries. I'm no expert but happy to talk :-) Hope you're managing it ok C.
Hi, thanks for the reply! Sorry you are having to deal with this too. It's awful isn't it? It sounds like we are on similar timelines, my problems started mid Feb this year. Out of interest how long did it take to get the IGM diagnosis? I've only just got mine. Suspected Cancer first, triple test ruled that out thank goodness. Biopsy showed Conybacterium so they've been treating it as an infection for months. I've been referred to a doctor in a neighbouring City who has some experience of dealing with it , seeing him next Monday and just trying to stay calm and think positive until then.
Are you happy to tell me a bit more about what has happened to you so far? Have steroids been used at all? What type of surgery have you had ( ie how extensive?). I hope it went well and you are recovering ok? Have you found a doctor with some experience of dealing with it? I found the lack of knowledge amongst doctors at my local hospital really worrying.
Have you tried any homeopathy, complementary therapies at all? I'm not usually a dabbler in those things but am prepared to try anything to try and get rid of it. Seeing a homeopath on Weds.
I've noticed American women on forums seem to see Rheumatologists with this condition, has anyone suggested this to you in the UK?
By the way I am married, 42, have 2 kids but my youngest is 9 so I haven't been pregnant or breastfeeding for a long time so I don't think I'm a typical IGM candidate. Just very bad luck I think :-(
Thanks for replying - I hope you are bearing up ok
Best wishes,
Sal
Xx
Are you happy to tell me a bit more about what has happened to you so far? Have steroids been used at all? What type of surgery have you had ( ie how extensive?). I hope it went well and you are recovering ok? Have you found a doctor with some experience of dealing with it? I found the lack of knowledge amongst doctors at my local hospital really worrying.
Have you tried any homeopathy, complementary therapies at all? I'm not usually a dabbler in those things but am prepared to try anything to try and get rid of it. Seeing a homeopath on Weds.
I've noticed American women on forums seem to see Rheumatologists with this condition, has anyone suggested this to you in the UK?
By the way I am married, 42, have 2 kids but my youngest is 9 so I haven't been pregnant or breastfeeding for a long time so I don't think I'm a typical IGM candidate. Just very bad luck I think :-(
Thanks for replying - I hope you are bearing up ok
Best wishes,
Sal
Xx
Hi Sal,
OK, this is quite involved, so bear with me!
Back in mid January, I found a lump in my breast; about a year before, I'd had a lump in the same breast, which turned out to be a cyst that went away on its own without any treatment, so I assumed the lump was another cyst. When I got to see a GP a few days later, I was diagnosed with mastitis and put on antibiotics, and told to go back the next day if it didn't improve. It didn't, so I went back the following day - the GP brought in a colleague for a second opinion, and I was offered the choice of a second course of antibiotics or admission to hospital to have IV antibiotics. After asking what they would do in my position, I took the second course, with a promise to contact out-of-hours the next day (Saturday) if I didn't feel better. Cut to Saturday night: I was admitted to hospital after my temperature hit 39.5 degrees and the area of discolouration on my breast (originally pink, now an angry red) had more than doubled in 24 hours. After a day on IV antibiotics, the staff suspected an abcess, which was confirmed with an ultrasound.
The following day, I was transferred to another hospital with a specialist breast clinic, and admitted there for another 2 days on IV. Further scans showed I had "3 small pockets" rather than a large abcess, By now, my boob was about 150% of its usual size (I'm usually a G-cup!!), and rock solid (my consultant later described it as a "rock hard football", it was purple at the time!!! lol)
I spent the next 3 weeks going to the breast clinic twice a week to be a pin cushion - despite repeated attempts to aspirate the pockets, the fluid was consistently too thick, even using the widest needles.
On Friday 13th Feb (not that I'm superstitious!), I had a core needle biopsy on 4 sites of my boob, followed by a "big chat" with the consultant, where I was told the likely diagnoses were 1) granulomatous mastitis, 2) another as yet unidentified infection, or 3) cancer. I was then told one of her colleagues wanted to see me with an ultrasound. So still digesting the news, I went off for an ultrasound on my just-biopsied boob. That showed one of the "pockets" was near the surface, another in the middle and the 3rd lying deep in the breast, and the other consultant wanted to "take a knife to the first one". I declined that offer on the grounds that I'd just had a biopsy and was feeling sore, but agreed to try on the Monday.
On the Monday morning, I had a call to get into the hospital as soon as I could as they wanted to operate to drain the "pockets". They cut away skin that had died due to lack of blood supply because of the infection, and drained 300ml (think a can of coke!) from those small pockets...
Just after this surgery, they were able to confirm I had GM, and the biopsy was re-examined to look for a cause (including TB). Thankfully, everything else tested negative (I was later tested for hypothyroidism and diabetes, and these were negative too).
A week later, more abcesses had developed, so I was back to ultrasound and aspiration attempts (all unsuccessful), so 3 weeks after the first surgery, I was back in for another operation. This time, they drained 2 more abcesses, and cut away hardened tissue in the breast that was described as "like cartilage".
Long story short, I spent the next couple of months on a variety of antibiotics, and having the wound from surgery packed and dressed on a daily basis. Sadly, I was also developing new abcesses...
Mid May, these abcesses were confirmed, along with a fistula (basically a tunnel that was allowing the fluid from the abcesses to move around within the boob), so earlier this month, I went in for a third operation to have the fistula cut out. That left me with 2 holes in my boob, each 6cm deep, which again require daily packing. I'm going to the hospital for this 3 times a week (with district nurses visiting on the other days) so the consultant can keep an eye on me.
I've been lucky in many ways - my consultant has treated one other patient with GM, and the removal of the fistula apparently did the trick for her. I have found a lump since the latest surgery, but the medical staff are trying to reassure me it's part of the healing process. I'm keen to believe them, but after so many abcesses it's hard not to be paranoid... I think if it does continue, the next steps will be going on steroids :-(
I've not tried any alternative therapies - a friend gave me a book about eating for your blood type, but it seemed to be incredibly restrictive, and I've never even heard of some of the few things it recommends I eat, so I've not tried that, instead aiming to eat as healthily as possible. I've not had anything suggested about rheumatologists, so can't offer any advice on that one. One big downer of a side-effect was that my hair started falling out (particularly when washed), so I've had it cut to take the weight out and hopefully slow down the speed with which it was coming out.
Similar profile - I'm 43, married with a 6 year old child, so no pregnancies or breastfeeding for a very long time (although I've seen reports that GM can appear up to 6 years after breastfeeding)
Despite all of the above, I'm trying hard to stay positive (having shared wards with cancer patients having mastectomies, I'm aware of how lucky I am, however unpleasant it may be).
Take care,
C x
OK, this is quite involved, so bear with me!
Back in mid January, I found a lump in my breast; about a year before, I'd had a lump in the same breast, which turned out to be a cyst that went away on its own without any treatment, so I assumed the lump was another cyst. When I got to see a GP a few days later, I was diagnosed with mastitis and put on antibiotics, and told to go back the next day if it didn't improve. It didn't, so I went back the following day - the GP brought in a colleague for a second opinion, and I was offered the choice of a second course of antibiotics or admission to hospital to have IV antibiotics. After asking what they would do in my position, I took the second course, with a promise to contact out-of-hours the next day (Saturday) if I didn't feel better. Cut to Saturday night: I was admitted to hospital after my temperature hit 39.5 degrees and the area of discolouration on my breast (originally pink, now an angry red) had more than doubled in 24 hours. After a day on IV antibiotics, the staff suspected an abcess, which was confirmed with an ultrasound.
The following day, I was transferred to another hospital with a specialist breast clinic, and admitted there for another 2 days on IV. Further scans showed I had "3 small pockets" rather than a large abcess, By now, my boob was about 150% of its usual size (I'm usually a G-cup!!), and rock solid (my consultant later described it as a "rock hard football", it was purple at the time!!! lol)
I spent the next 3 weeks going to the breast clinic twice a week to be a pin cushion - despite repeated attempts to aspirate the pockets, the fluid was consistently too thick, even using the widest needles.
On Friday 13th Feb (not that I'm superstitious!), I had a core needle biopsy on 4 sites of my boob, followed by a "big chat" with the consultant, where I was told the likely diagnoses were 1) granulomatous mastitis, 2) another as yet unidentified infection, or 3) cancer. I was then told one of her colleagues wanted to see me with an ultrasound. So still digesting the news, I went off for an ultrasound on my just-biopsied boob. That showed one of the "pockets" was near the surface, another in the middle and the 3rd lying deep in the breast, and the other consultant wanted to "take a knife to the first one". I declined that offer on the grounds that I'd just had a biopsy and was feeling sore, but agreed to try on the Monday.
On the Monday morning, I had a call to get into the hospital as soon as I could as they wanted to operate to drain the "pockets". They cut away skin that had died due to lack of blood supply because of the infection, and drained 300ml (think a can of coke!) from those small pockets...
Just after this surgery, they were able to confirm I had GM, and the biopsy was re-examined to look for a cause (including TB). Thankfully, everything else tested negative (I was later tested for hypothyroidism and diabetes, and these were negative too).
A week later, more abcesses had developed, so I was back to ultrasound and aspiration attempts (all unsuccessful), so 3 weeks after the first surgery, I was back in for another operation. This time, they drained 2 more abcesses, and cut away hardened tissue in the breast that was described as "like cartilage".
Long story short, I spent the next couple of months on a variety of antibiotics, and having the wound from surgery packed and dressed on a daily basis. Sadly, I was also developing new abcesses...
Mid May, these abcesses were confirmed, along with a fistula (basically a tunnel that was allowing the fluid from the abcesses to move around within the boob), so earlier this month, I went in for a third operation to have the fistula cut out. That left me with 2 holes in my boob, each 6cm deep, which again require daily packing. I'm going to the hospital for this 3 times a week (with district nurses visiting on the other days) so the consultant can keep an eye on me.
I've been lucky in many ways - my consultant has treated one other patient with GM, and the removal of the fistula apparently did the trick for her. I have found a lump since the latest surgery, but the medical staff are trying to reassure me it's part of the healing process. I'm keen to believe them, but after so many abcesses it's hard not to be paranoid... I think if it does continue, the next steps will be going on steroids :-(
I've not tried any alternative therapies - a friend gave me a book about eating for your blood type, but it seemed to be incredibly restrictive, and I've never even heard of some of the few things it recommends I eat, so I've not tried that, instead aiming to eat as healthily as possible. I've not had anything suggested about rheumatologists, so can't offer any advice on that one. One big downer of a side-effect was that my hair started falling out (particularly when washed), so I've had it cut to take the weight out and hopefully slow down the speed with which it was coming out.
Similar profile - I'm 43, married with a 6 year old child, so no pregnancies or breastfeeding for a very long time (although I've seen reports that GM can appear up to 6 years after breastfeeding)
Despite all of the above, I'm trying hard to stay positive (having shared wards with cancer patients having mastectomies, I'm aware of how lucky I am, however unpleasant it may be).
Take care,
C x
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