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granulomatous mastitis User Group
How do i stop the pain??
About This Group:

This group is intended as a meeting place and forum for those who have been diagnosed with granulomatous mastitis ('GM') or idiopathic granulomatous mastitis ('IGM'). I think one of the greatest challenges with this disease is its rarity and the associated lack of understanding in the medical community. But we can share here - and hopefully make the healing process a little easier for each other.

Founded by JoJo45 on January 17, 2010
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How do i stop the pain??

Hi everyone!
I am close to tears for finding this group, i hope i get some help.
I am 30 years old i have two children aged 4 years and 2 1/2 years.
I breast fed both for up to 1 half years with no problems,i have always had large breasts
but minus the weight i have on me now.
I have Polycystic ovarian syndrome yet i fell pregnant naturally both times,i dont get a regular periods so
this is where i am at now...
Was on contraception pill for around 2 years then stopped cause i felt it was causing me to gain
weight and breast tenderness,I haven't had any  period for 5 months almost!
BANG oneday i get breast pain in both breasts (felt like period coming or early pregnancy.. even felt like i had breast milk..very engorged)....Then the lump showed in my right breast at 11:00 o'clock  i was in pain all over my breast!! i had to carry it to turn over in bed..cant take off my bra either.
Had all tests done ultrasound/mammogram on both/biopsy of lump and under arm lymph node right side all.
Came up as "acute Granulomatous mastitis" ! no cancer cells found.
NOW this is where i am going crazy...its been a month since all this started and my specialist here in SYDNEY Australia suggested surgery and since i have so much breast tissue he said he can bring the breast together to avoid it looking dented.As i am going for a family trip in may for two months he said the surgery can wait until i return provided the lump doesn't get bigger and i dont fall pregnant or am not pregnant now.
I had urine tests done since this started all negative still going to have a blood one done to be sure 100%...I was given the all clear to go back onto "duromine" phentermine 30mg a day pills for weight loss as i lost 9 kilos in 5 weeks just weeks before this nightmare began using them...wondering if it cold be related? Dr thinks not.
I am in sooooooooo much pain now in both  breasts yet no lump in Left!! Dr told me to just get supportive bra and have ibuprofen for pain until surgery.THATS IT??? no antibiotics or anything that may help relieve symptoms?
Both breasts feel like they are engorged i cant even walk or move around like i want from the pain and heaviness!
PLEASE i know this has been  alot to read ,but if you can help me with any advice i am for ever thankful.
Last thing to add NO breast cancer or any cancer in our family and i have "inverted nipples"
8 Comments
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Avatar_f_tn
Ibuprofen should work I take it for the pain...did you have the surgery? how did it go?
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Avatar_f_tn
You poor thing.  I feel your pain, you can read what I went through in earlier posts.  For some women the pain is minimal, for others myself included, it is the most unbearable excrutiating pain imaginable.  It sounds like this is what you are going through.  When I had my initial flare up I was in this pain for 2 months, my entire body actually ached, my daughter was almost 3 at the time and any time she touched me it hurt.  You need prescription narcotic pain medicine.  I am a nurse so I do know a thing or two... No one should have to suffer in pain when there are things out there that can help.  Yes, ibuprofen did help, for 3 months I took 800 mg every 8 hrs around the clock, amazing I didn't get a GI bleed!  But I also needed my narcotic pain med.  The first flare up I was taking dilaudid and the second time percocet.  For people who like to go the natural route, good for you, more power to you.  That's just not my thing.  Pills are not bad or evil, if you are taking it as prescribed you don't need to worry about  getting addicted.  Of course you don't  want to drive when you take it and I understand you have little ones to take care of, as did I, but as long as you have someone home with you when you first take it to make sure that it doesn't sedate you, you will be  fine.  Again, no one should be in pain, this disease can be horrible and you should not have to suffer.  Talk to your doctor, stand up for yourself, you deserve some relief.  Also, if you haven't had surgery yet, read more about this, it is not suggested.  Fine needle aspirations are suggested to drain the fluid collections but typically cutting makes things worse.  Read up as much as you  can, be your own advocate, and insist on what you need to get relief.  Keep us posted.
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Avatar_f_tn
Hi!  I totally agree with you on the pain killers, I took it until I didn't need it any more.  Regarding treatment, would you mind sharing what you're on to make it go away?  Like are you on steroids, methotrexate, etc.  I don't want to have to do either of those two, as it sounds like steroids doesn't work once you get off and methotrexate sounds like its toxic for your body.  If I can avoid a mastectomy, then that's be great.  I've heard many stories of people curing their autoimmune disease through juicing.   I'm just trying to change my diet at the moment.  I have not even been diagnosed yet, so the doctors just have me on antibiotics, I'm weaning off steroids (was on for 3 weeks, now I'm on 1 every other day and that was for my erythema nodosum).

One more question, is it better to let the abscesses open on their own and drain or to let a doctor lance and drain it?  Please explain this, I've been having I&D every abscess and I think I have one more.  But if I do another I&D and it will only cause me to get more I'd like to know so I can stop.

Hope to hear from you soon!
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Avatar_f_tn
Hi,
So sorry that you have to go through this.  When I first got sick it took 2 months to diagnose me correctly, through that I had an I&D and spent a total of 8 weeks on different antibiotics.  When I got diagnosed the antibiotics were stopped (they weren't helping and every time that the pus that was draining was cultured it didn't grow an bacteria).  When I got the diagnosis I actually was starting to do a little better, no more abscesses were developing so my treatment at the time was do nothing and wait.  

The approximately 10 abscesses covering my left breast slowly started to heal however about 5 months later nothing had healed 100% and another abscess was forming.  I went to a different doctor who lanced the abscess.  This was great, no waiting for it to burst and than drain for weeks, it was done with in one doctors visit.  A couple weeks later another abscess started.  At this point I decided it was time to try prednisone.  Within one week all wounds were fully healed, I didn't have to wear bandages anymore.  I did a 9 week taper.

I thought that this was the end of this monster.  Unfortunately several weeks off the prednisone and I could feel the disease starting to attack my right breast.  I immediately started back on the prednisone.  This time I was on for 4 months.  It really didn't seem to help, I couldn't wean past 30mg, the symptoms, pain and inflammation mostly would get too extreme.  I stayed at that dose for an extra few weeks because I was going to disney for week and was not going to have my trip ruined.  However as soon as I got home I continued to wean off the prednisone and just let the symptoms come on.

Once again, the horrible pain and abscesses started.  It was hell once again.  That  went on for a couple of months and than I finally decided that I was going to conquer this thing and get a mastectomy.  I felt liberated finally coming to this decision (trust me something I said I would never do but after so much suffering, well, it changes a person).  Anyhow, I decided when it would get done, consulted with a plastic surgeon, and than one day I got out of the shower and another abscess opened and drained.  This time though the pus poured out for about 90 minutes and when it was done 1/3 of the size of my breast was gone.  

I was cautiously optimistic at this point that perhaps this was the end of it....Well it has been believe it or not!  My poor boobies have been through hell and back and have so many scars on them, but I still have them and they are healthy.  Will it ever come back, dear god I hope not, but I know that it can.  
What I know is that cutting only makes things worse.  I wouldn't do I&D's, this disease does not let the tissue heal.  The only suggested method to get rid of the pus is through fine needle aspiration under ultrasound.  I was having that done weekly at one point.  Prednisone may alleviate the symptoms but many times once off it the symptoms will return, or in my case will rebound as it did in my case and than attack the other breast.  Antibiotics really are pointless because this is not an infection, (unless the open abscess has signs of infection around the skin)  

If you do nothing it will eventually run its course and die out, it can take up to 18-24 months for that to happen.  I would suggest treating the symptoms, mainly the pain.  Get plenty of rest, try to remove any unnecessary stress (lack of sleep, too much work, too much stress, not enough rest always brought on more abscesses).  Be kind to yourself.  No one but you knows how truly isolating and devastating this disease is.  Find a doctor who is willing to put in the work.  The doctor I chose once I knew what I had had never had a patient with this and knew very little about it but she put in the time and effort to read every bit of research there was out there.

When I first was diagnosed and read that regardless of treatment this disease eventually does run its coarse and die out I thought how horrible that is, to just let it happen and do nothing.  Having been through this all though, there is really nothing you can do, shy of getting a full mastectomy, to change the coarse.  It ***** and is a very sad thing to accept, but this is what it is.  My advise like I said would be to treat the symptoms, be as healthy as you can otherwise and be kind to yourself.  This too will pass.  Hope this helps, keep me posted.
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Avatar_f_tn
Hang in there! I know the pain is awful. When I was suffering at my peak, I asked for lidocaine to be dripped (not injected) in the open wounds. This would give me relief and any procedures would be pain free. I also did steriods for 20 weeks, which reduced the inflamation (inflammation)...not abcesses, but I was pain free for the first time.

I also research foods that reduce inflamation (inflammation) and foods that I needed to remove from my diet to reduce the inflamation (inflammation). It helped! I enjoyed pomegranate concentrate and aloe vera juice (with grape juice to reduce the bitter taste).

My total healing time was 14 months. I occassionally have pain, but it is "healing pain" and it only lasts for a few minutes.

We are all here to support you through this.

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Avatar_f_tn
Wow!  I'm so sorry to hear all that you have been through!  You and every one of us dealing with this disease are such troopers to have to go through this all.  Thank you for sharing your experience as I know it will help me and many others decide how to handle our symptoms and what to expect.  I'm thankful for this site and everyone who shares, because without it, I would have no idea what's going on with my body and I think it would cause me to be depressed.  It can be scary.  But having this site/forum helps so much and knowing there are some answers is a God send.

As I mentioned before I had one more spot brewing.  Well I used the clay on it 3 times so far and it doesn't currently feel like it's filled with pus.  So I've decided that I will go ahead and just wait and see how this one goes.  I'm going to keep using the clay on it since I know a few people on here have had good things happen with the clay.  Maybe eventually I will use it over night but for now I'm just using it for 20 minutes a day.

Again, thank you so much for sharing your detailed experience and thank you for coming on here and offering advice and support.  It's like we are each other's doctors and we are also our own doctors since the doctors don't know what to do with us to help us.  

To: coffeeknitter, I'm curious about the aloe juice.  Is it already prepared in a bottle that you are drinking?  Or is it a powder that you have to mix?  I am also researching anti-inflammatory foods and have begun to eat healthier. I would like to say it's helping, but it's only been 1 1/2 weeks since I started doing that so I'm not positive.  Thank you so much for your advice, and sharing what worked for you, we all really appreciate it!  And thank you for your support as well.
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Avatar_f_tn
The aloe vera juice is already to drink. I found it at Trader Joes, but I am sure any health food store carries the juice. The juice is bitter...really bitter. I usually mix 6 oz of aloe vera juice with 2 oz of white grape juice to offset the taste. At Trader Joes the jug is huge and cost about $7.99.

If you ever need support or someone to vent on about this illness, I am always happy to listen and offer support. I have been through this and made it through this. I am thrilled I found this group for support.

Have an outstanding day!
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Avatar_f_tn
Thank you for responding, I'll try checking for the juice at our local health food store.  I am so happy that you have found healing!
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