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Periductal mastitis/duct estasia

27 REPLIES 27
Flo20
Member

Re: Periductal mastitis/duct estasia

Hello

 

I have been having the same symptoms and treatments for about 9 months now. 

Every single. Time it settles it flares again. Longest I've been okay is 3 and a half weeks. 

I've just quit smoking this week. Hoping it will go away now I've quit. 

 

I know it won't. Just want to be smoke free so they will consider surgery.  My breast is so scarred from being drained and lanced and cut. I have had enough. I can't work. Some days can't even pick up my kid from school I feel so ill all the time. 

 

One of the only things I have found relieves the pain and helps it settle quicker is having a hot water bottle on my breast when it is flared. It seems to help bring out the puss. 

Wishing you the best of luck with all this 

 

Flo

Talandjane
Member

Re: Periductal mastitis/duct estasia

Thank you Jill . That's very kind of you to reply . It really helps to speak to others in the same situation - hopefully someone will reply. These forums are brilliant  for the support they give xxx 

Jill1998
Community Champion

Re: Periductal mastitis/duct estasia

Sounds absolutely miserable for you .Im sorry I haven't any relevant experience to share but hopefully someone else will - I can understand you considering more radical surgery - these things really wear you down .Jill

x

Talandjane
Member

Re: Periductal mastitis/duct estasia

Hello 

 

Are any of you lovely ladies out there? 

 

I have really come to the end of my tether with this. It started about 2 years ago and I had a surgery to remove the ducts. The surgery site got terribly infected and I got really sick and had about 5 lots of antibiotics to get better and in the process lost my job. Approximately each month - I do feel this is cycle related I get another infection behind my nipple or this month it is on my scar line of the previous operation. I often feel I have the flu and try desperately try and fight this with Vit c , Zinc etc. Sometimes I get away with it but most of the times the treatment is just antibiotics.

 

I have a seen private consultants and approx. 5 consultants at my local breast clinic. One surgeon wants to go in again but another says there is no point as they can never get all the ducts and all he suggests is antibiotics.

 

I am getting to the point when I just want the breast removed. Has any one done this? I am 52 years old still having periods. Has anyone gone through the menopause and it just stopped. My other issue is I have a really sensitive stomach and suffer from acid reflux which is made worse by antibiotics. Feeling really fed up .

 

Please can someone give me hope about how they treated this, what  to do or that it goes away.

 

Jane xxx

Periperichick
Member

Re: Periductal mastitis/duct estasia

Hi Mimi88

 

I totally feel you. I'm going through that same issue now. It's been around 4 years, progressively worse. I had surgery last January but after several months of my right breast being ok, it's come back with a vengeance. 

It seems the periductal masititis has gone deeper into my breast and is no longer able to break off the skin on it's own so I had a choice of getting it lanced or opening it up to get it scraped and cleaned. I opted for the latter with the hopes of it getting better and not recurring anymore. Could you please tell me what happened to your case? I do hope you are better and have found something to make it stop. I used to be a light smoker but have stopped even before getting this so I agree with you that it's more linked to my period. 

 

Thanks for posting!

Mimi88
Member

Re: Periductal mastitis/duct estasia

Hi. I wondered if I could speak to anyone that is going through something similar. For the past two years I have battled with periductal mastitis, it's been a nightmare to say the least! I am 30 abd a casual smoker. The condition had got so bad that I've had the area lanced 4 times and been in hospital with cellulitis as a result of infection. I seem to be on antibiotics every second week and ut feels like as soon as this settles and I think it's gone it's back 😞 It starts with my nipple stinging and sore to touch, then the bottom of the nipple stiffens and the whole nipple inverts. It then hardens at the side of the nipple and becomes red,hot inflamed and sore to touch. The redness starts to spread up the breast and I get no relief until the infection comes to a blister next to the nipple and releases. I have seen surgeons, GPS and no one can give me any other relief but through antibiotics. I feel it may be linked with my cycle but doctors haven't acknowledged this and keep saying it's due to being a smoker. Has anyone had a similar experience? I used to have sore lumps while on birth control but two years ago I came off it to try for a baby and since it has been so bad, again that's why I think it could be linked to hormones. Any advice or to hear anyone's stories would be really helpful, I feel even the doctors don't know alot about this condition and I am so fed up with it now. Thanks.
glitterykat
Member

Re: Periductal mastitis/duct estasia

Hi all. It's been a while since I've posted in this topic but I have been back to the hospital since. I went on the 10th/Sept, where I was examined once more and talked to someone who looked like an 'expert'. Thing is, she's told me there's 'no indication' that it's anything 'serious' and that duct estasia would 'most likely' be found in about 50% of women if they were  scanned, so it's "common" but also that it doesn't present pain.

 

Obviously, this perplexed me, having been in pain for months and suffering other symptoms such as hair loss. I asked her why I had pain and she sort of shrugged (!) and said I think it's due to hormones/stress/anxiety as to why I have breast pain. I was like, is it normal to have it for 6/7 months? She didn't seem to think it raised any red flags but I'm still getting discomfort. She also advised me not to take the pill as it could make the pain worse. Funny since one doctor put me on them to 'help' me level out my hormones but this didn't help at all!

 

Very frustrating to be told different things but she said there was no other tests that can be done. Nothing to biopsy, no physical indications as to suggest it's malignant. Just 'hormonal' and that I needed to work on my anxiety. She's basically told me it's in my head. Yet, I'm still in discomfort and losing hair, not to mention stomach aches every other day. I'm not denying I have anxiety issues but to suggest that's why I've been in pain? I didn't buy it then and I still don't but she was very adamant that nothing more can be done and that I wasn't getting a biopsy and absolutely not to getting my ducts out.

 

So I'm at a loss. I've been trying to relax, eat well, lose weight, sleep well since then but it's hard because I don't know what's happening to me. It's hard to put your trust into a doctor because they don't know what I'm feeling and I'm concerned that those symptoms aren' going to go away and are actually malignant. But I can't count how many times I've been checked now, so they must not think it to be urgent or malignant? It's very confusing since I feel discomfort/pain, nipple reddening and mastitis symptoms myself and I've also been suffering with like..hot flushes, sometimes I am very hot but she said it was my hormones?!

 

Confused. Kat x

glitterykat
Member

Re: Periductal mastitis/duct estasia

Oh poems, it does, doesnt it?!
The doctors constantly give people the walkabout and treat us like we're stupid. Frustrating. At least I'm getting referred now as far as I know so there's been at least some progress.

Kat x
poemsgalore
Member

Re: Periductal mastitis/duct estasia

Oh dear glitterykat,
That 'sigh' says it all. You must be feeling really fed up (to put it mildly) with the constant fobbing off. I'm afraid I can't answer any of your questions as I haven't even heard of the condition before. I just wanted to say 'hi' and give you my support on here. I hope you get another referral, and finally discover what is happening. Sending big hugs and best wishes.
Poemsgalore xx
glitterykat
Member

Re: Periductal mastitis/duct estasia

Hi millemoo, I know what you mean. Although I was never given any treatment or even any advice of how to deal with it (apart from take iboprofen when there is pain) after I was diagnosed because they had said it was "mild". It's a very weird case. I'm checking everyday like my doctor has told me to do but I'm feeling more than seeing. It's very bizarre! I've stopped taking them and moved onto Aspirin but I'm trying not to do that as often because I think that could be bad for me? It does help a lot though..

I mean, I don't know..I think in your case you have more of a reason to get this infection as you have had children and have breastfed but I haven't so when they said it was mastitis, I did think 'Hmm, that's odd'. Even the doctors were like, asking questions and they sounded as though they thought it to be odd that I didn't smoke also!


Hopefully time will help or you can get back to the doctors or the hospital so they can help you more but I've basically been told the clinic will not see me again until some time because they thought it wasn't necessary.
xxx
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

Hey Kat, when the doctor at the hospital said fixed I was laid down on the coutch with my hand behind my head and she was moving my whole breast up and down if that makes sense? I think she meant the whole breast wouldn't move if it was fixed? I know this sounds quite naive of me but from what I have been reading about ibc it sounds like different people have had different symptoms/experiences and thats what worries me. I asked my gp how many times she had seen ibc and she said once! But she was certain it was pericutal mastistis because that was much more common in our age group. She also thinks it is this because i have a purple type spot at the end of my nipple which she said might be a duct that has come out from breast feeding??? i only breast feed my youngest for 5 weeks and he is 19 months now! I have only had one ultrasound and that was the first time I went to the hospital, they told me at the hospital everything was normal and my gp told me that they had put "no abnormalities found" on thier system. The reason they wanted to see me for a review after 2 months was because I have a slight indentation above my nipple/areola area in the same breast. I have been for 2 more checks (within the last two months) once with the professor and then a doctor and they both said the indentation was fine and couldn't feel anything. I pretty suprised though that they didnt do a reassurnce ultrasound the last time I went just to double check especially with the redness! Instead after telling me I was ok she was indirectly telling me to stop coming back to the hospital and to go to the gp next time! (i think they are sick of seeing me!) i almost felt like she wasn't taking me seriously enough though! ermm can't help but worry! my breast also feels harder with a bit of swelling around the "infection area" but not always. i explained all this at the hospital but they didnt seem concerned. I know about how you feel about your life turned upside down< i've never been so worried. I'm so scared that they haven't checked me out right. Everyone keeps telling me to put trust into the doctors but i cant help but worry. If things haven't changed in a months time I will def go private! Also my gp told me to take ibroprufen 3 times a day for 1 week to take the inflammation down and has put me on evening primrose oil for 3 months for the breast pain. xx
glitterykat
Member

Re: Periductal mastitis/duct estasia

Hi millemoo. Sorry you're having such a frustrating time with this also. It seems like the doctors are useless but I guess they really don't know anything about this condition. I think they don't want to worry us so they give us as little info as possible.
I've had it for a bit longer (middle of/end of March) but back then the pain was really bad. It's gotten a lot better but I don't know if this is from the BC pills or just me getting used to the feeling of being in discomfort (for 5 months nearly now)
What does she mean by the word "fixed"? Like hard and swollen? My breast where I've got the "infection" is feels somewhat like that word, so that worries me. It still moves like my other breast, it's gotten bigger I think than my other breast (though one of mine was always bigger) but it's not 'hard'. Ah, I don't know...
The only redness I have is my nipple and it's really sensitive when touched. My breast is really sensitive and sore now but it's not necessarily "painful". It's just a difficult thing to describe. I've been asked by my doctor if I "think" it's cancer and I said I didn't know..I hope not I said..but.. I'm 23 and I had just turned 23 when my symptoms started so my life has been totally turned upside down about this...
I'm going back after September so I'll let you know but purely on the duration of my case I'm not particularly hopeful but I have to stay somewhat positive, I guess.
Thank you for your story xx

Edit: Oh, I should add that I didn't initally feel a lump and as far as I know (and being checked endlessly) I don't have any now (touch wood) so it's very puzzling indeed.
Another edit: You had an ultrascan also, I'm reading? Did they happen to show you the letter they write to your GP after they did that? They showed me mine and they were pretty adamant that it was nothing 'suspicious' or 'malignant', the specialist even told me it wasn't to my face. Very frustrating!
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

Hi kat, hope you well. I'm kind of glad I have just found this! I, like you have just been told by my doctor that I have this periductal mastitis and I do feel slightly nervous and worried and your story sounds simalar to mine. I started with my problems in May (this year) when I could feel some sort of burning down my left breast and thought I could feel a lump. At this point I was due on and thought it was probably just that. After my period things didn't change so I went to the GP who could feel the lump and she did me a two week appointment to our hospitals BC clinic. Feeling very nervous (and by this point the lump had gone) I went to the appointment and had the a scan. The scan did not show anything and the doc said she had no concerns but would like to see me in a couple of months for reassurance. I asked about the burning and she said it was probably just hormonal. Since then the burning pain has continued (feeling it around once a week) but under my arm. I went to see a couple of different gp's and they just said the same that it was just hormonal and nothing to worry about. Then I googled to try and find answers and all that has come up is ibc. I have no major swelling, discharge, dimpling etc just the burning and odd tngling sensation around the nipple area. But after seeing everything about ibc I called the breast clinic up straight away and they said they still had no corncerns but for my own peace of mind they brought my appointment forward and I got to see the professor. The professor then examined me and said that he thought every was fine, told me not to worry and google! A couple of days later I noticed a bit of redness around my areola, it was like light pink and almost disappears at times. But around the same time I got really bad pain in the breast especially that area. The pain was kind of on and off and felt like it was slightly throbbing. After a week of this I went back to the gp (this time a different one) and she said she was pretty sure it was an infection in duct and sometimes these thinsg linger before they come out in to an infection. She put me on antibiotics for a week and the pain has kind of gone, but I still feel the tingling and I have felt the burning a couple of times in the middle of the night. The redness ha kind of gone but you can still see where it was and the colour is slightyly greyish now. I think the redness and pain were the icing on cake for me so I went back to the breast clinic last wednesday and it was a different doctor this time and she examined me and said she couldn't feel or see anything and the redness was probably just nothing?? (even though i have had it for a month now!!) I questioned her about ibc and she said that the breast would feel fixed if it was that and mine wasn't like that. SHe said that I had to stop reading the internet and I have stop thinking it is cancer becasue it wasn't. She said that she agreed with my gp that it was probably just something perductal and I should stop worrying. (I think she could see how anxious I was!) No further plan of action has been made. I felt a light burning sensation in the middle of the night last and tingling again today and still see what is left of the redness everytime I look in the mirror. I am still worried as I have read all sorts on here. I have even thought about going private for an opinion! If it continues I will just go back to my GP. but I just want a conclusion so I can end this worrying. I am 32, I don't smoke and I have 2 small children. PLease let me know how you get on
glitterykat
Member

Re: Periductal mastitis/duct estasia

Hi anyone who reads this thread. Update on my condition:

I've been back to the doctors today and he said to give it until September, which is when my BC pills run out to refer me again to the breast clinic if I still have symptoms. He had asked me if I thought it was cancer, to which I replied 'I don't really know what I think it is'. He explained that the specialists have been really thorough and that they would have given me pills or tablets or treatment if they had any available. I've had a lot less pain since I've been on it but still, from time to time, get some pain. I'm really sick and tired of it now, and under a lot of stress and worry, as you all can imagine.
So, right now, I'm hoping the BC pills will maybe level my hormones out and that might help but I'm doubtful. I'm not hopeful, to be honest. So, I need to brace myself for the months ahead and the diagnosis if I'm going to be getting referred in September.

:(
glitterykat
Member

Re: Periductal mastitis/duct estasia

Oh I forgot to ask, how old are you? I was told that smoking was a risk factor, but I don't even smoke?

XX
glitterykat
Member

Re: Periductal mastitis/duct estasia

Hi there d00dlebug. Sorry to hear you have been going through that, I know how you feel. (I think).

In my experiences so far, I've not had any secretions or discharge. I find that weird. I was diagnosed with it on April 30th and I still have it. It's causing me a lot of pain and sometimes not been able to get to sleep cause of it. Even ibruprofen/codeine isn't helping. Each time I've been back to the doctors and had breast exams, they say they don't feel anything in my breasts (touch wood), that my nipples "seem" fine (one of them is still red from what I can see?) and my appearances of my breasts but I'm still getting pain. I'm having to use painkillers and heat packs when I'm in pain. Weirdly enough about a few weeks ago, it seemed it was really getting better and I had no pain. Now it's unfortunately come back with a vengence and I'm in a lot of pain also.
I went back to the doctors yesterday, received another breast exam and I asked if there was any way of getting a biopsy or a FNA but she said they won't do it and they've done "all they can" as they've decided it's a benign condition; but it's not going away. So yeah it's causing great distress to me because like you've said, you worry that it's something else, what is it doing to me?
She gave me some Microgynon ED pills (???) to see if they level out my hormones, to see if thats my source of pain/reason why it's not going away but at this point they are seemingly refusing to give me anymore diagnosis which is absolutely barmy to me?! If Im saying I'm in a lot of pain and hardly getting sleep, then something is obviously up.

Anyway, in July, I would have had this for about 4 months. I have no idea how long it's meant to last, when it's going to go away but I'm gradually starting to accept it may be another diagnosis...it just makes you think. I'm really scared about this. I've never had anything like it before and they say I'm 'too young' that they don't want to be taking my ducts out or anything out of my body, as they will leave scars. I'm like, I don't care if it gets rid of my pain?!

I don't understand. My thoughts are definitely with you and I'm always here if you need to chat? I could really use others to talk to about this also. 😞
XX
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

Hi Kat
I thought I would post on here in case either of us can be of any help to each other. Sorry in advance if there is too much information but I want to be detailed about what happens to me to see if this is the same as your experience.
I have also been diagnosed with periductal mastitis. My first occurence of the infection started as just a lump behind my nipple, I went to the doctor and antibiotics cleared it up straight away. Since this though I have had several more occurences and each time it has got worse. Antibiotics cleared it up each time. After the lump comes a 'whitehead' to the side of my nipple and this grows into a pus filled cyst over a couple of days. I have had to have it drained by a doctor twice and it popped once when I had a plaster over it. The last occurence of it, 2 weeks ago, is the worst I have had, with the cyst exploding within 4 hours of the tiny whitehead appearing and having to go to A&E as 3 different lots of anti biotics hadn't worked and no pain killers were easing the agony I was in.
The first time I had it was 4 months after having my baby girl and I have had it every month since. It starts within 2 days of stopping my contraceptive pill for my '7 pill free days'. The only time I have had a break from it is when I took my pill for 3 months without a break so I have had 7 times now at the same time every time I am due a period. Despite all of this I am being told that it is due to smoking.
I am also worried that the longer this carries on the more at risk I am to more serious conditions in the future.
What do you experience? Is it about the same as above?
x
glitterykat
Member

Re: Periductal mastitis/duct estasia

Yes, like that. Also I keep getting back aches and kinda like underarm aches. Not umm painful but really annoying and sore. Well, I think I asked but I don't think he elaborated on it so probably felt I didn't need a prescription? It's really odd. I know I shouldn't worry but your mind wanders!

It's not burning all the time, but it's sensitive all the time. Does that feeling supposed to linger when you have this? I can imagine it can if it's been infected?

xxx
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

I remember the burning, it feels like a hot coal right? And it throbs if it gets bumped? That's how I knew I had a cyst, the infection was a simple staph infection, cleared right up with antibiotics, maybe you could try asking your doctor if a prescription might help?
I know it's scary, I've been terrified every single time I have found a lump ( I have fibroadenomas now, a benign kind of tumour) but I promise worrying will only make you feel worse. There's no reason not to trust your doctor and his plan of keeping an eye on things. And I know it's hard but focusing on the pain will make it more noticeable, try to avoid thinking about it, do an activity that uses a lot of brain power and you'll soon forget all about it, or go to a yoga class, cliched I know but the breathing techniques really do help xxx
glitterykat
Member

Re: Periductal mastitis/duct estasia

Okay well..it seems to be constant so I'm really worried about that. I went to my doctors a few weeks ago and he said give it another month or two and if it still persists come back. But I'm really worried because it seems like it's constant. I mean not constant burning pain but constant sensitivity and sometimes burning pain which I take painkillers for. I'm just scared right now. 😞
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

It wasn't all the time, more like on and off, I did notice it got worse when I was stressed, exam times that kind of thing, but that's usually when I get ill anyway, stress lowers your immune system. I have mild hayfever with those symptoms, have you tried taking an antihistimine?
glitterykat
Member

Re: Periductal mastitis/duct estasia

Oh really? I didn't know that it could last that long? Interesting, thank you.

I have a question though. This may be a coincidence or not but I'm developing flu like symptoms. Not fully blown but a kind of scratchy throat and a little bungy feeling. Should this be something to be concerned about, do you think? I'm only wondering, don't worry if you can't tell me, you're not a doctor (I don't know but I'm presuming you're not lol) 🙂 X
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

It was about three years I think, 15-18
glitterykat
Member

Re: Periductal mastitis/duct estasia

Thank you Sailor-Girl! Sorry if this is personal to ask but how long did you have it? I'm glad that it hasn't reoccured for you. 🙂 X
Guest user
Not applicable

Re: Periductal mastitis/duct estasia

Heya, I had it too, mine started at 15. I was told it was normal skin bacteria getting into the ducts and causing an infection, and that padded bras could make it worse because your breast gets too warm and the bacteria breeds. My doctor also said it was also a hormonal thing and that it would stop eventually, it did, I haven't had a reaccurance in at least 5 years (I'm 23 now). I took antibiotics for some and some cleared up on their own, my doctor was reluctant to give me antibiotics too often incase I developed a resistance, but paracetemol is great for the pain.
If you've already had an ultrasound and seen a specialist I wouldn't worry about it being anything sinister, Doctor Google is a scary thing; if you do have to read up on it, stick to websites BCC or the NHS.
Good luck xxx
glitterykat
Member

Re: Periductal mastitis/duct estasia

Thank you for the welcome. No one can help me? 😞
Lucy_BCC
Member

Re: Periductal mastitis/duct estasia

Hi Kat

Welcome to the BCC forums, in addition to the support you will soon have here please feel free to call our helpliners to talk through your concerns, lines are open 9-5 weekdays and 10-2 Saturday on 0808 800 6000 and our team are here to offer you further support and information

Take care

Lucy

glitterykat
Member

Periductal mastitis/duct estasia

Hi there. I'm just wondering about this infection/benign condition. Today I had an ultrascan after weeks of going back and forth to the doctors complaining of some nipple pain and burning type itching and redness (with my nipple) and some pain around my areola. The doctor said the result was periductal mastitis and explained to me what it was. I've read and was told that it is mostly (?) caused my smoking or living in a smoky environment. Which I participate in neither.

But what has worried me is that some people online have equated this benign condition to the possibility of it being inflammatory breast cancer. At my age (23), I would have thought this was maybe rare? I've read that mastitis is rare in non-lactating non pregnant women so do I have a right to be worried that this is apparently my outcome? Or has anyone else had this before at a young age? Before I was relieved it was a benign result but now I'm terrified that it may not all be over and that it could be a red herring.

Thank you in advance for your help.

Kat