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I am back with another post in my 'Let's Talk About' series which focusses on the subjects surrounding our iatrogenic condition that desperately need to be discussed. Today, I am talking about (T)SW and the nipples.
I think this might be one of my most highly requested posts, and it's a subject that has been on my radar for a long time as I get so many questions about the nipples and how to manage symptoms there.
It is a sensitive area, both literally and metaphorically. It's not somewhere we would usually consider showing people, or talking about openly, and so suffering tends to be done silently, which couldn't be worse for our mental or physical health. This is why it is so important we discuss these subjects more and bring them out into the light. There is a stigma surrounding anything which has a sexual connotation, like the nipples, the genitals, and even eczema herpeticum, which is so sad.
As far as my own experience with (T)SW and the nipples goes, it's not somewhere which majorly impacted my withdrawal. I mean, I certainly had issues with my breasts and nipples during withdrawal, but nothing too intense, apart from one time where I remember being in the bathroom and my nipples were suddenly desperately itchy. As it's such a difficult area to scratch with your nails (and I was absolutely desperate to get some relief), I remember grabbing a slightly rough towel and rubbing it hard over my nipples. Whist I was doing it, it was truly nirvana, but I don't think I will ever forget the pain after. It was like all the nerves had been exposed and were ripped open – then the oozing started ... just grim.
As always, I have been overwhelmed by the kindness of others in our community who have offered to share their experiences with (T)SW and the nipples. And so, without further ado, I'll hand it over to them ... but before I do, just a little reminder that I am not a medical professional and anything shared in this post is not intended as medical advice.
*Also, please note that in the following case studies (and how I have written it above), there are instances where TSW has been written (T)SW. Due to the names surrounding our iatrogenic condition being focused solely on topical steroids, we have had to improvise. Please read this post (here) for more information. (T)SW is how I will be writing it from now on until a more permanent, more inclusive, solution is found.
Ceri
25-34
I discovered TSW during what I thought was another eczema flare not long after I'd given birth to my daughter. I'd already had doubts about my eczema diagnosis and honestly cried from relief to find out that it wasn't just me and that one day I'd be cured! Then I actually started the withdrawal process and realized just how horrific the next few years were going to be.
Initially one of the worst areas for me were my nipples, which wasn't ideal as I was breastfeeding my newborn. I'd never had a problem with the skin on my chest at all before and don't think I'd applied steroids to the area. I was determined to continue to breastfeed so my main focus was just making sure it didn't have any effect on my daughter. Usually with ooze you'd let it dry out but as I was constantly cleaning the area that wasn't an option. I used loads of cotton breast pads and water to keep the area clean and a lanolin based nipple cream that was suitable for breastfeeding to create a barrier for when she was feeding. I was careful to keep them well moisturized after a painful incident of ripping off a dry pad. Then, as with all things TSW, it was just a case of waiting it out!
I'm now well over a year into withdrawal and I haven't even thought about them in months. My body is almost completely clear and I've honestly not felt this healthy in over a decade. I'm currently 2 months into a flare but compared to the early days it barely even registers. Before that I'd had a solid 3 months of genuinely perfect skin that had allowed me to go on holiday with my family and swim, sunbathe and shower daily. Things I hadn't been able to do since I was a teenager.
At the start of this process I honestly consider ending my own life on an almost daily basis, and if it wasn't for my new baby daughter I don't know that I'd still be here. Now I'm sat here with my rashy face and flaky hands but clear nipples, a new business, and another baby on the way. I hated to hear it at the start but it really does get better.
Bethany (@bethanyajonesx)
25-34
I had used steroids on and off for around 25 years before going into withdrawal. I didn’t use regularly, just as and when they were needed & more so in my early 20s. This was usually only in the winter months and mainly on my hands.
I would experience dry nipples with eczema but I don’t recall ever applying steroids to the area and it wouldn’t be bothersome. I’d usually just apply some kind of ointment or thick moisturiser. I wouldn’t experience any discomfort at all with this.
During (T)SW my nipples would ooze, split and shed. I never wore a bra during my worst months as clothing in general hurt. I could only wear baggy cotton clothing so I lived in pyjamas. I’d find my nipples would get stuck to clothing and the ooze would leave them covered in the clothing fibres. The itch would be unbearable! Nipples are a hard area to scratch as the breast moves whilst you’re trying to do so – this would be so frustrating as I couldn’t get that good itch! I would then keep itching until I caused damage. They’d be pretty painful as they would crack deeply. I would use a damp microfibre cloth in the bath to get the large flakes off. I found zinc cream very useful whilst they where wet or oozing and then Balmonds Skin Salvation whilst very dry.
I still get dry nipples and occasionally they’ll crack but, luckily the oozing has stopped. They’re also rarely itchy. I’m around 17 months (T)SW and they haven’t bothered me for the last few months apart from the dryness.
Woman #3
25-34
Before TSW, around the time I was experiencing rebound between steroid treatments (topical or oral), I started to have some issues with my nipples. Nothing as bad as during TSW but I did remember them being a bit irritated, and I can't remember clearly, but I don't think I ever applied topical steroids on them.
During most of TSW, my nipples have been affected. Even during better periods when other areas of my skin was doing well, my nipples, along with my hands and feet, were areas which were never clear. The symptoms I experienced were mainly itching, flaking, oozing and crusting. Usually I would find it the itchiest when I have been in a bra and out for the entire day and my nipples haven't been able to "breathe". Whenever I was not wearing a bra, my nipples would itch and ooze, and a lot of times my t-shirts were stained with ooze and you could see patches of yellow which is how bad the ooze was.
I haven't tried much, but something that helps is using a folded square of tissue paper and a sensitive skin plaster to tape it across my nipple. It isn't entirely sealed up so it gives the skin the ability to breathe, yet it is protected from friction, abrasion, and also reduces the chances of me scratching, especially at night when I cannot control myself in my sleep (I would somehow always think it's a good idea to just give it a scratch hahaha). This would be my most useful approach at managing this nipple TSW thing. The tissue absorbs the ooze and I would also feel a lot less tempted to scratch. I would suggest also to remove it only in the shower when the water has made it soft and not try to rip it off dry. Except when I am showering I will have this tissue taped on my nipple regardless of whether I am in a bra or not. As simple as it sounds it's the best thing I have used and would suggest it to others who have the same issue. I have never used a silver nursing cup alone as the ooze and humidity make it messy and yucky, but the silver cup over my tissue taped nipple is the best as the cup kind of provides extra protection when I am wearing my bra so there is no pressure on the nipple (which would cause oozing). Wearing a bralette with padding but without underwire is also much more comfortable than a wire cupped bra. Over time I've found that my nipples have improved, but it's been a very gradual and almost unnoticeable process. I am now 2 years TSW and my nipples are still not ok, but they do not cause me grief. As long as I use the method I suggested above, it does not bother me at all, except after a long day out they might itch for a bit, but a shower will make it much better.
There is also a weird smell probably due to the oozing. Fret not if you experience the same thing you're not alone!
Ieshia (@ieshiapower)
18-24
I mainly used topical steroid creams, going as far back as 20 years ago, although I only remember using creams on my nipples a handful of times. Typical symptoms such as burning, itchiness and swelling on my nipples were the first. Eventually I was unable to wear a bra and wore bandages to cover my nipples to combat the constant oozing. The main life savers for me were my self-adhesive highly absorbent bandages, zinc cream and lymphatic drainage massage. I have been experiencing TSW for 21 months now. I was finally able to wear bras again and no longer needed bandages for the ooze around 15 months in.
Woman #5
25-34
I remember having issues with my nipples pre-TSW back in 2011 and I was given steroids to treat it. It goes without saying that the problem returned a few years later and I was given steroids again. During TSW, my nipples were pretty much unaffected for the first year, but in June 2021 (month 14) my right nipple started feeling sore and itchy and eventually showed TSW symptoms (the whole itchy > oozing > raw > flake cycle). In November 2021 (month 19) my left nipple also became affected. I tried all sorts of things, which I’ll list below. Some things helped for a short time while others did nothing for me. Ultimately it’s all about doing what makes you comfortable at the time and helps you get through the current stage you’re in (E.g. raw, oozing, etc) which you’ll only know through trial and error.
Things tried:
- Lanolin nipple balm
- Vaseline
- Sudocrem
- Avene cicalfate
- Multi-Mam compresses
- Antibiotic cream
- Antifungal cream
- Silver spray
- Gauze bandages
* I also tried Silver Nipple Shields which were good for when I needed to go out and wear a bra so nothing would rub against them with the shields in-between! They’re from Amazon :)
Woman #6
25-34
When I first started TSW it was on my face and arms and slowly progressed throughout my body. By 3 months the entire ring around my nipples was cracked and constantly healed and cracked again. I never went back on topical or oral steroids or biologics but I did start seeing a naturopath that prescribed Traditional Chinese Medicine. He gave me a liquid prescription to put on my open wounds with a paper towel for 40 minutes, twice a day, and for about 6 months I did just that – twice a day I’d go into the bathroom, lay naked and have my partner soak paper towels and put it on. Some of the worst memories from this experience is from that time. In between, I found it helpful to take cotton rounds, poke a small hole through it, secure it with medical tape, and put my nipple through to give the cracks some “air”. The best way to remove the cotton round if it stuck due to ooze was wetting it and letting it sit for 10 minutes and off it went.
I also stopped wearing bras to not compress my nipples. My nipples healed that summer (8-9 months after the onset) but symptoms came back around my 1 year anniversary. I did the cycle again and it got under control again, but in the 2nd year it got worst and I started getting white discharge from my nipple. I went to check to make sure it wasn’t cancer or anything serious but after 3 months it stopped.
Most recently, I’ve noticed when it gets irritated it’s just on the bottom of my nipple – I hypothesize it’s a moisture issue. I’ve found it super helpful to use a thin piece of medical tape and 2 small pieces of facial cotton (thin) to create a barrier where the open wound and crack might be. 1. It prevents moisture, helps it heal. 2. The doubling helps when the discharge sticks to one piece but you can still change it out without ripping the scab. I’ve tried the cup new moms use for their nipples to give them air but it was too uncomfortable for me.
Luckily, at the moment, my nipples feel in control, and no wounds, but I keep an eye on it because wearing a tight dress for an event or sleeping wrong can easily get them irritated and trigger weeks of healing.
That’s physical stuff, mentally it’s also been taxing. The months of compression really made me doubt my femininity and sexuality. I asked myself how my partner would ever see me beyond this weak broken person. Upon reflection, I was clinically depressed for months thinking about TSW, and my identity as a strong woman was falling apart. 4 years later, my partner is so loving and kind but he doesn’t touch my nipples in fear that it might hurt me. I’m not sure it won’t either. Just still taking it day by day.
Autumn (@tsw_fall)
25-34
I've used steroids since I was a baby. Although, I used them very sparingly throughout my teen years. When I was about 19 years old, I started using steroids more on the area above my upper lip, because I would flare there often. I then used more and more on my face. I never once used on my nipples.
When I started TSW, my nipples were dry and chafed, with a little amount of weeping. What started out as small areas around my areolas, turned into my entire nipple area being covered in open, weeping wounds. They eventually started cycling into dry and oozing. I had a baby one year into TSW, so I was conflicted on how to breastfeed. I ended up breastfeeding with raw nipples. It was painful, but I didn't want TSW to take that away from me. I am about to be four years into TSW, and my face and nipples are places I still struggle with. Throughout the entire time, I have tried many different methods of taking care of my nipples. I started with non-stick gauze, then regular gauze. At one point I tried to put a large bandaid over them and ended up with a bad scabbed reaction in the shape of the adhesive (TSW made me so sensitive I reacted to the bandaid, when I'm not even allergic). I then used reusable breast pads for about two and a half years. After I stopped breastfeeding, I went back to gauze. I never put much on them, because it would make me itchy. Occasionally I would put Melaluca oil on my pads, or spray them with colloidal silver in hopes of preventing infection. Every shower I take, I wash them with baby soap to prevent infection. What has been working for me as of late is a pump of gel colloidal silver and a piece of gauze that I let fall off in the shower on its own to prevent pulling off skin. My worst nipple has healed on the bottom so far. Letting them breathe seems to do wonders.
Woman #8
35-44
I first developed a small rash on the inside of my arms in 2018 - previous to this I had suffered with an infection after childbirth which I used a lot of Hydrocortisone to treat (I now think this triggered Topical Steroid Addiction, resulting in the rash on my arm which wouldn’t go). Numerous dermatology and GP appointments resulted in me eventually using Elocon on 90% of my body with full body flares.
When I finally realised I had RSS in 2021, I stopped applying the cream - I have been suffering from TSW ever since. My nipples weren’t actually affected initially, until a really bad full-body flare which included my chest - my whole chest and nipples were swollen and deep red/purple. Ever since this, my nipples have oozed non-stop day and night. They soak tissue (which I have to stuff into my bra day and night), and the ooze ranges in colour from clear/straw to deep orange coloured ooze. The affect this has had on me mentally is huge. It has stopped me from having an intimate relationship with my fiancé. My nipples bleed and crack and cycle through the usual TSW symptoms with swelling and flaking etc.
Things that have helped me:
I will say I have tried near enough everything, and a couple of things do temporarily heal the nipples - swimming in the sea and getting sun on them is huge - mine pretty much healed over after a holiday in Gran Canaria. Unfortunately they proceeded to ooze when I returned home. Another good remedy is to boil garlic cloves for 25 minutes until they are soft, squeeze the paste of the cloves onto the nipple and cover with gauze over night. By morning all the ooze will have been drawn out and they do actually heal over for a few days. I can’t wait for this nightmare to be over. Praying for anyone else going through this.
Michelle (@eczema_warrior)
25-34
Steroid usage: I used corticosteroids throughout my childhood and Protopic when I was in my teens. There was a time in my 20s where I applied corticosteroids unknowingly throughout my body, including the middle of my chest. I never applied corticosteroids or Protopic directly on my nipples.
The experience of having TSW symptoms on my nipples was one of the most challenging symptoms to deal with. It came probably 1 to 2 years into TSW and took months to fully recover. It started off with oozing around the area of my nipples and spread to my entire areola getting inflamed. The ooze caused my nipples to stick to my shirts and my bras. It would get worse if pressure was applied to my breasts so I avoided wearing tight fitting bras.
The nipples are a really intimate part of the body, it also sticks out and touches everything first. I remember the pain of peeling my bra off my nipples at the end of the workday. Let’s talk about the shame it brought me. The breast and the nipple are so sexualized but for me, they became so ugly. Instead of pleasure, it caused me pain. Any sort of touch made me cringe. I remember I couldn’t look at cheese graters or knives because I just imagined it grating my nipples because that’s what it felt like all the time.
I ended up making these donut shields (here) to create space between my boobs and my shirts because I found that whatever touched my boobs just made the oozing and crusting worse. I was shirtless as much as I could be at home, but when I went out, I’d wear these donut shields on my breasts. It’d sit between my bralettes and my nipples. That's what worked for me: creating space between my nipples and my shirts to avoid anything touching it.
I also went to the doctor to make sure that there wasn’t an infection. It’s a difficult topic to talk about when you’re going through it and I completely understand. Looking back on it, I was really ashamed, scared and worried it wouldn’t get better. But it does get better and you’ll be able to free the nipple again!
Woman #10
25-34
If I remember well, my first TSW symptoms on the nipples and breast area started during the summer of 2019, when I was not even officially in TSW. I had simply finished one round of topical steroid application, and without knowing, my body was going into withdrawal mode. I had already been experiencing RSS and TSW symptoms for about 4 years at the time, each time I was finishing a topical steroid degressive application protocol in fact.
It all started with extreme itching on this area, which led to skin damage and oozing right away. I remember putting a band-aid on both nipples during all of my 3-week summer vacation… Upon my return, I began applying steroids again to my body, wherever the flare was showing, including on my nipples… I did apply steroids there a few times over the next 8-9 months, until I officially started my withdrawal (March/April 2020).
Today, 27 months into my withdrawal, my nipples are still oozing on and off, and scabby. Their shape has changed: they look and feel ‘shapeless’, ‘floppy’. They are often itchy, too. I've tried many things to help them heal during these past 27 months: clay cataplasms, honey (antimicrobial + healing properties), beeswax breastfeeding cups, gauze… Nothing has enabled healing, so I stick to band-aids and let them air-dry as much as I can, no bra is helping as well. Over the past 27 months, I’ve had only about 2.5 weeks of dry nipples at the most. I was able to put a wireless bra back on during this time. On a daily basis, I mainly use band-aids + bralettes, especially on work-days, because I still feel self-conscious about my nipples showing through the fabric.
This whole part of TSW has impacted my self-confidence and self-image a lot as a woman. I can’t wait for this part to be healed but I still have doubts it ever will. I am also concerned about the impact these long-lasting symptoms will have on the long-term on my breast and nipples…
Jody (@livjmac13)
25-34
I have been going through Topical Steroid Withdrawal since January 2021, having used them off and on for 15+ years. As a child/teenager, I had low-level, manageable eczema 90% of the time, but would use e
Eumovate on this daily (under advice of my GP). Seasonal changes or periods of stress would cause me to flare and have a few weeks of bad, angry eczema – this is when I would use the most steroids, on one hand, in the creases of my arms & backs of my legs. I never used them all over my body as I never needed to.
In 2020 I was referred back to Dermatology and went through two periods of full-body dressings with potent topical steroids for around 3 weeks. At this time they thought I had Chronic Idiopathic Urticaria, and that this was also exacerbating my eczema, I was covered head to toe in sores, wheels, mark, rashes.
When things were at their worst, I was itchy head to toe. One of the itchiest areas for me was my boobs & nipples. I would scratch until they bled. My skin was so dry at times that my nipples would crack open, I felt like I had been breastfeeding for months! They would ooze and scab over and then the cycle would start again – like a lot of the rest of my body, too.
In October 2021, I began UVB Light Treatment at the hospital, as I had been on immunos and injectables – and a new MCAS diagnosis – they took things very gently (I started at 9 seconds). As the treatment started to help my skin, my nipples healed. But, as the time on the UVB light machine increased, I started to get some burning. At one point, each time I went for treatment my nipples would burn, scab over and then literally peel off. I could peel them off in one full sheet if I tried.
I started to use suncream specifically on my nipples before my treatment and this seemed to help. Like many things in TSW, I’m not sure what actually helped the most, but a combination of keeping my nipples moisturised (Skin Salvation helped mostly) & time seemed to help.
I have to say I’ve also now been medicated for my MCAS which has helped my skin massively overall.
My friends with new babies offered me their nipple creams but I couldn’t find one without lanolin (and I’m allergic). My nipples can still be an area to play up, but no one ever talks about it. So I’m happy to share my experience with anyone – we are not alone.
Woman #12
25-34
I've had eczema since I was a child and in my teenage years it was really really bad. I was treated with cortisone and Protopic. I used cortisone on and off because it was the only thing that would help, so the doctors told me. I might have used it on my breasts, but I'm not 100% sure.
So I think I've been going through TSW since November 2021 even though the doctors don't want to know about it – they told me it is just a bad eczema flare because of the Covid vaccine. Well, it might have something to do with it but EVERY symptom of TSW just fits with my skin for 8 months now.
TSW on my breasts started around month 5. They were sooooo itchy, especially my nipples and the areola (mine are pretty big). I scratched them open so many times because the skin was so “thin”. Then at some point the elephant skin kicked in. The skin was so thick, when I moved my breast it looked like an accordion and my nipples were always hard and super sensitive. The skin was so thick and red that you couldn't see where the areola was. It was just red, thick, and painful and then the hard nipple. I couldn't wear a bra anymore, but no bra was also painful so I used tight tops so they couldn't move much – that helped me the most I think. I can't recommend any creams because I didn't see any difference. The best thing was just to leave them alone, whilst other parts of my skin needed lotion. It was weird, but time made it better.
Now my nipples are not hard all the time and my breasts don't hurt that much anymore. I can hug people again which is a great feeling. Wearing a bra is still very very uncomfortable and I try to avoid it. Now with the warm temperatures it is too hot to wear an undershirt. Sometimes I just walk around naked – well at home. When I sweat a lot, I dry the sweat so I don't get a rash under my boobs (which was a problem before). I have some open or flaky parts on my breasts now and then but it heals faster, and my nipples don't crack open anymore. I hope it stays this way, but I know that time will heal it.
To everyone who suffers with TSW on their breasts/nipples, I never thought it would limit so many things. The nipples are the centre of body and when you move, your breasts move with you. You really get to know your body in TSW, at least that is what I experienced. Take it one day at a time.
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Thank you to all the women who kindly shared their experience with me for this post. You're amazing <3
To anyone who is suffering badly right now, I hope this post has been able to help you not feel alone. We are never alone, even when we feel the most isolated.
Sending love and healing, always,
Cara x
Other posts in the series:
Let’s Talk About: TSW & The Genitals (here)
Let’s Talk About: Eczema Herpiticum (here)
Let's Talk About: Protopic (Tacrolimus) (here)
Let's Talk About: Elidel (Pimecrolimus) & Eucrisa (Crisaborole) (here)
Let's Talk About: Oral Steroids (here)
Let's Talk About: Mould/Mold (here)
Let's Talk About: Pregnancy (here)
