I'm sorry to hear that you've been living with this condition for osme time now. My understanding is that granulomatous mastitis is quite rare so I can imagine that it's been difficult for you to connect with others who are living with the same condition.
I've had a look through the forum and I can see that [@Pumkin] mentioned this in some of her posts but that was last year and she's not updated since. I do hope that you're able to find other women who are living with this condition.
Hi, was diagnosed with it about 12 years ago, Ifound a very large lump one morning and contacted my doctor, to cut a very long story short, after biopsies and antibiotics and numerous scans I eventually developed abscesses which were treated with steroids, this was apparently the only way that could prove that it was the disease, it cleared up when the steroid course finished but I have scarring and the lump is still there but is softer, I still get pain sporadically but am just grateful that I still have two breasts, at our very large breast clinic I was the 5th case in 9 years, I was lucky that they had seen it before as it is so rare
I've been suffering from this condition for the past 2 years. Numerous courses of antibiotics and steroids of which none have worked. The pain is now to the point I can't wear a bra.
I was due to have surgery at the beginning of January, but as covid increased the surgery was cancelled.
I know it's odd but just posting for the first time ever. I had it first in 2014 and it took a year to diagnose fully and clear. And now I possibly have it again (since November 2020 ) but not got a definitive answer just that results came back with similar properties to GM but this time it feels different with the burning pain. Back tomorrow to see a consultant for a line of treatment so fingers crossed as I'm now fed up of not having anyone to chat to about it and worried about what it could do to my quality of daily life with such pain. Sorry I'm ranting on
i wrote a few years ago ( @pumkin - my email was hacked so had to re register!). It’s been a long road living with granulomatous breast disease/mastitis, I still have to go every month as it hasn’t gone it’s changed in that I don’t have cellulitis anymore but still have lumps/hard masses, I’ve had an open wound since start of December and silver nitrate isn’t closing it up this time, think my boob has had enough! So have a dressing on non stop pretty much, I change it and have to go to treatment room every week so they can do another change and keep an eye on it. My breast team are nice but don’t seem to have a clue ‘watch and wait’ is all I get told. My health deteriorated with illnesses since and I always blame it on this disease that’s wreaked havoc with me. I have burning pains deep in the breast especially when it’s infected which happens every month.
I hope you got some answers at your appointment. And I wish everyone all the best.
I had a large lump come up suddenly the week of my mum's funeral (she died of breast cancer) so I was absolutely terrified.
got referred straight away by which time I had an inch and a half open wound which would not heal. Scaring still there.
my clinic we're amazing but it took just shy of a year for a confirmed diagnosis. They were looking at inflammatory breast cancer which I'm told has very similar presentation.
I also had erythema with it which was unbearably painful.
ive had 3 reoccurrences since, experiencing one at the moment but in the other breast. The burning feeling is constant and I can feel the lump getting bigger after 2 days. Just been sent a chose and book appointment to be told there are no appointments! Literally cried this afternoon as I can't bear the thought of it developing to abscess stage again.
it has such a huge affect on my mental health too especially as comforting cuddles from my husband are out of the question as it's so sore :(
Sorry that was a bit of an emotional dump but like all of you I've never found anyone who I can talk to about it and have them understand.
i have just been misdiagnosed with breast cancer. When I went back for treatment plans they told me it wasn't cancer but GM. I have no idea what I am dealing with here and there is nothing much online apart from very severe cases. I've just got a hard painless lump (7cm) and I'm not in a high dose of steroids to shrink it but feel worried about this due to effects etc etc. i wish there was some more info out there
In mid December I started to get a paid on my left breast and it felt like mastitis, I went to my GP and she prescribed be antibiotics ( which didn't work) then referred me to the breast clinic in January and since then I've had a biopsy, mri scans and blood tests done. Now in March and they have diagnosed me with granulomatous mastitis and have referred me to a rheumatologist. Awaiting appointment
I have two open wounds on my left breast and one open wounds on my right. I have had dressings on them for about a month (changing them every 3 days) by myself and nurse at clinic. I also had ERYTHEMA NODOSUM which was very painful but that has settled although sometimes I still take naproxen for the pain.
How are you all getting on? and how has it affected your day to day life? Also has the healing of your open wounds gone back to normal? Ie tissue regrowth because I feel my left breast is getting smaller compared to my right.
sorry for the long post but as someone else mentioned it's not very common to find other people with this disease/condition.
So glad I found this post I was diagnosed with Granulomatous mastitis today!
I developed a huge lump (about 8cm) in February. Was referred to breast clinic who did ultrasound, mammogram and core biopsy. Based on the mammogram I was expecting cancer so was very relieved to learn today that I don't have breast cancer. However like some of you have said there isn't much out there about this condition!
Mine was a bit tender all the time, with some very painful days just before period started. It's now still swollen from core biopsy (3 were ago) and unfortunately I also have an infection from the needle site, so it's been agony the past few days (on antibiotics now).
My current treatment plan is to give it at least 4 weeks to fully recover from core biopsy and then review to see where we are at. I'm not finding out much from online reading but it sounds like it's pretty debilitating for many people. Also some of you waiting a very long time for a diagnosis!
So yeah just saying hi and I'm glad I found this thread!
