Let's Talk About: Mould/Mold

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If you’ve followed my blog or Instagram account for more than five minutes, you’ll probably know I’m pretty black and white when it comes to (T)SW – give it time and eventually you’ll get better ... (T)SW is a drug withdrawal, not a skin condition ... diet hasn't got much to do with it ... yada yada yada, so I suppose this post deviates slightly from the concrete set of beliefs I've held for many years. 

I started hearing about the link between mould (American spelling: mold) and respiratory/skin conditions around a year ago, and since then, it's become a subject which has fascinated me. How something like mould can have such a profound impact on your health is mind-boggling to me. 

Before I share another word, I'd like to throw out my well-worn disclaimer that I am not a medical professional and anything shared in this post should not be taken as medical advice. 

At first, I was a little reluctant to share this post because I know if I’d read about it during (T)SW, I would have been convinced that I had an allergy/intolerance to mould, so read with caution. The mind during withdrawal is a very sensitive organ, taking in everything like an anxious sponge, and sometimes information, no matter if it's of benefit to some, can end up doing more harm than good. This is what scares me about all the information surrounding (T)SW now – there is just SO MUCH of it, and most of it you don't even need. I am doing this for the people who might not have a clue it exists and could answer a lot of questions for them. And so, now that I've got that out of the way, we'll get on with the post.

What is mould?

Mould/Mold is a proud member of the fungus family, and a loving relative of other members of the fungus family like mushrooms and yeast. Found practically everywhere, mould plays a very important role in the ecosystem by decomposing dead organic material, and is also integral in the fermentation of food and drinks, and in antibiotics such as Penicillin. Mould grows when there is excess moisture present in an environment, especially where there is limited/no sunlight or bad ventilation. Give mould moisture and it will live its best life, reproducing by making spores which float through the air and attach themselves to whatever tickles their fancy like food, wood, paper, fabric, carpet and furniture, amongst many others.

Mould can look very different, depending on its age and type, but typically it is a black or green colour. Other colours it can be are white, orange and brown, and it can also appear in fuzzy patches or dark splotches/shadows.  

For all its 'positives', mould can pose a risk to your health because it produces allergens, and sometimes even toxic substances. Touching or breathing in mould spores can cause an allergic reaction, with symptoms ranging from sneezing and a runny nose, to skin rashes and even asthma attacks.

According to medical literature, those most at risk of a reaction are:

• People who have a weakened immune system, such as those having chemotherapy.
• Babies and children.
• The elderly.
• People who have respiratory problems.
• People who suffer from skin issues like eczema.

... which brings me nicely onto the reason for this post. What is desperately sad is the fact that there have been many people who have been misdiagnosed with eczema, when it is actually a reaction to mould, but by the time this has been discovered, they have become dependent on the medication they have used to treat it – enter (T)SW, my old friend. 

Then, there are some who will go through (T)SW, give it time, but find they are still experiencing symptoms and start to doubt the process, like anyone would. They then might go back to the medication that was mistakenly prescribed to them in the first place, and mask and bury the real problem even deeper, whilst having all these other health complications from the medication. 

The treatment of skin conditions needs to be completely scrapped and before medication is prescribed, first there needs to be an investigation into possible root causes, which would negate the need for medication and the risk of developing a completely preventable iatrogenic condition. 

I am now going to hand this post over to four people in our community who have suffered as a result of mould exposure and show exactly why this subject desperately needs more awareness in order to prevent so much needless suffering. 

Jody (@livjmac13)

25-34

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1. A brief overview of your skin history and the medication you used to treat it.

Childhood eczema, mild and manageable. I was prescribed Eumovate regularly by my GP and told to use “as and when needed”. Didn’t fully realise this was a steroid until reaching adulthood. In 2020, my skin ‘exploded’ from nowhere with red & purple wheels covering me head to toe. Was diagnosed with Chronic Idiopathic Urticaria and given more steroids - Dermovate, Betnovate/Elcon etc. and steroid bandages applied daily at dermatology. No change. Biopsy taken with little information given about the results. I then was prescribed Omalizumab to self inject every month, did this for 5/6 months with little change/worsening of other symptoms (alopecia/hair loss, extreme weight loss – around 3 stone, joint inflammation & pain).

More steroid dressings administered at hospital. Omalizumab stopped and started Ciclosporin. Used this for 6 months and was taken off it by my derm – skin had improved slightly but other symptoms worsened – this is when I developed an allergy to eggs, dogs & cats. Super reactive skin. Stopped steroids altogether January 2021. Put on Dupixent June 2021, self injecting every 2 weeks, lasted 12 weeks. No change. 

I went on holiday for 7 days in August 2021, skin held up relatively well with the odd flare. Going through TSW process at this time. Within 24 hours of returning home, I had a massive flare, bright red and raw head to toe. Swollen eyes, ears, lips. I had always suspected a trigger in my flat, but this confirmed it. I had a cupboard in my bedroom I was convinced had damp & would regularly be covered in mould when weather was bad. Numerous workmen dismissed this.

I was written off by my derm and GP as having ‘mental health issues’ and referred to psychology programmes against my will. I was given UVB treatment that did show some signs of improving my skin but not for long periods. 

In November 2021, I had an appointment with an MCAS specialist, Dr Deering. He completed his symptom checklist and said he believed my “beefy score” was an indication of MCAS. He said I must identify triggers and remove them completely. He started me on Ketotifen, Nizatidine & Sodium Cromoglicate (very slowly stepping up dosage gradually over 4 weeks each time). These have greatly improved my health. In January 2022, I moved out of my flat and almost instantly began to recover. 

Since, I am aware my previous property has been sold and the home report listed “serious damp work needed in living room and both bedrooms”.

2. What is your experience with mould? 

Moving away from my old property where there was damp/mould and concealed black mould has changed my life. Every day I would wake up with a new flare and not know why. I cut out so many things and nothing would ever consistently work. I was so worried as it was such a big step/change to move house. But I honestly believe this is what helped me recover most/fastest.

3. How are you doing now?

I’m still taking each day as it comes, my old childhood eczema flares in the usual places and sometimes I can have bad days but nothing like before. I see a functional health specialist regularly and she’s helped me so much. She is supporting me through the detoxification process. I take medication for my MCAS and this is still a work in progress but seeing lots of benefits and improvements.

4. Tips for anyone who might be suffering from the same issue? 

I know that a house move is not always possible and is a massive decision but I never looked back. Charmaine Shepherd at Edinburgh Health Clinic has helped me every step of the way - the only one! I’m so lucky to be in a position where I have been able to get private health appointments. But mostly, the thing that has helped is time to heal myself.

Amanda (@amandapanacea)

35-44

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1. A brief overview of your skin history and the medication you used to treat it.

I had some eczema that started around 11 years old after a year of being sick often and taking lots of antibiotics, but by the time I was 12, it was gone. In college, I had another major flare for almost a year, but after I changed my diet and became interested in health, it went away. I was flare free for over a decade until I got ill with Hepatitis A, then shortly after I was exposed to mold in a waterfront apartment for over a year. During that year, I developed full-body and face skin rashes and was diagnosed with Mast Cell Activation Syndrome. I knew of Topical Steroid Withdrawal because I used to use steroids in childhood, so I avoided them. However, I was not aware oral steroids could cause TSW, and I took 12 days of oral Prednisone by recommendation of a doctor so that I could do an immunotherapy treatment, which sent me into debilitating TSW.  

2. What is your experience with mould? 

I have been exposed to mold several times in my life, but it wasn't until after I had Hepatitis A did being exposed to mold cause me to develop horrible skin rashes and Mast Cell Activation. Mold is a fat soluble toxin which gets processed by the liver, and if your liver is stressed it can impact this process, causing skin issues.

3. How are you doing now?

It has been a little over 1.5 years since I started TSW, I would say I am about 90% recovered. I no longer limit my diet or take antihistamines. 

4. Tips for anyone who might be suffering from the same issue?

Make sure you rule out mold in your home, parasite infections, liver stress, and candida and bacterial overgrowth in the gut. Those are some of the biggest driving physical factors that lead to skin issues. The second biggest reason is nervous system stress. The biggest improvements I made were because of doing trauma work, somatic experiencing techniques, brain retraining, and visualization techniques.

Alice (@alicecathie)

25-34

1. A brief overview of your skin history and the medication you used to treat it.

I've had eczema on and off since birth. My skin basically just reacts to anything. If I’m stressed, for example, I’ll start getting little patches on my hands.

My skin was okay most of my life until about 14, which was when I first stated drinking alcohol. That was when I started consistently using steriods, which would put me in a cycle of drastic ups and downs. 

In 2016, I went through TSW, but I don’t think I realised that’s what it was. At the time, I didn’t have the skin community I have now, and I was skeptical about TSW, I thought it was just really bad eczema. 

After my experience with mould, I went back to steroids because my skin was unbearable, which lead me to my second round of TSW from 2020 till now.

2. What is your experience with mould? 

In 2019, I moved out of my parents house and into a shared house. I remember when I moved in, the skin on my torso flared almost immediately. I wasn’t too worried, as lots of people with skin conditions have flares when they move from dust/stress etc.

Within a few months of living there, however, my skin was completely out of control. I had never experienced flare-ups like it, and nothing seemed to make them go down. I was at a point of wearing wet wraps on my arms all day everyday. I remember feeling embarrassed and confused. Everything seemed to make it worse. 

Unfortunately, like most people with eczema have experienced, I went to the doctor and begged for help. I told them this wasn’t normal, this wasn’t how my skin normally acts and I knew something was wrong. I left the doctors with a high strength steriod, and even though I didn’t want to use it, I hadn’t been comfortable in months. I just wanted to sleep. 

After a few months, I got conjunctivitis, but my partner at the time didn’t catch it. When I Googled, it said conjunctivitis isn’t contagious if it’s caused by an allergic reaction, the main cause for the reaction was mould…

There had been a few specs of mould above my bed, so I got rid of them with some bleach and moved my bed. When my bed was on the other side of the room, I noticed there was a huge amount of mould on the wall. I had an attic room and was unable to see it before because of the shape of the room.

Something clicked in my brain. I ran and got the bleach and I just KNEW, this is why my body was so upset. When I removed the mould, my skin literally cleared up overnight.

3. How are you doing now?

I’m doing well! I’m still going through TSW but it’s much more manageable than it was last year. Leaving my skin to do it’s own thing was the best thing I ever did. 

4. Tips for anyone who might be suffering from the same issue? 

Please please please, everyone who has eczema, check for mould in your house. It’s an extremely common allergy for people with skin conditions. If you find it, there are sprays you can use to remove it from bathrooms and walls etc.

Mould is really bad for your health in general. I think people underestimate how bad it can be for you. Keep an eye on the areas that get mouldy and remove it.

If you have a room which is at risk of getting mouldy like an attic room, you can get a special fan fitted which will help. 

Jessica (@jessicajeremiahphoto)

35-44

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1. A brief overview of your skin history and the medication you used to treat it.

I developed eczema at 2 months old, and consistently used topical steroids until my 30s. There were times I didn't use them, but always had a tube. When I moved to a new state after getting married, my skin and health really flared up, and at one point I was prescribed 7 different steroids – different ones for my face, body, eye drops, nasal spray, scalp, a tape for stubborn spots, and a steroid injection. Eventually, we moved again and I also removed dairy from my diet and within a few months, I was able to get off all steroids. I was clear for 5 years, until I developed a small rash on my wrist, which was treated with a topical steroid, and within weeks turned into TSW (2015). I attempted a month of stopping cold turkey but was so shocked and horrified that I went back to using the steroid, and attempted to wean off for the next year. That obviously didn't work, so in 2016 when we moved again (my husband is in the military and I often mark time periods by our many moves!) and my skin was so horrible, even with the steroids, I stopped cold turkey again. It was horrific. I was unable to care for myself and my daughter, so my mom flew out to stay with us for a few months. Around that time I discovered Medical Medium and tried that approach for many years with minimal impact. 

In 2019, we moved back to the home where we lived when I started TSW, and my skin flared again massively, even though I had been almost fully clear previously, and it was like early TSW all over again for the next few years. In 2021, we found a hidden leak and discovered that there were high levels despite nothing being visible, no known leak, and no mold smell. We moved out for 6 weeks while we remediated, got rid of most of our belongings, and I started working with root cause and functional medicine practitioners to address the damage my body had experienced.

2. What is your experience with mould? 

I now know that I have lived in buildings with water damage, and most likely mold, for most of my childhood and adulthood. I'm just now putting the pieces together with how it's impacted my skin and general health. I have always had mysterious symptoms, like PoTS (dizziness, nausea, brain fog, exhaustion, tachycardia, etc), in addition to my skin issues, and migraines. 

Most recently, our home was found to have a hidden leak under our shower, and tested very high on an ERMI mold test for water damage/black molds that produce mycotoxins and cause health issues. Mold is often not localized and can spread throughout the home through the HVAC system. In addition to remediating the bathroom, we also got rid of all our belongings that couldn't be effectively cleaned (mycotoxins and spores are very tiny and can embed in porous items), and kept only metal, glass and clothing that could be washed. We cleaned our air vents, installed a whole home air purifier, MERV 13 air filters, did a thorough fogging and wipe down of our entire home, and only brought items back in once they were decontaminated. 

I am also completing a supplement protocol to help with mold detox, as well as addressing other factors that contributed to my skin/health issues initially, like parasites and industrial toxins. I am much less restrictive with my diet, and am no longer plant based, but still choose high quality unprocessed foods and avoid gluten. For me, my skin problems were just one manifestation of a deeper root cause.

3. How are you doing now? 

I'm doing really well since working with both a functional medicine and a root cause practitioner and addressing mold in our home. My skin is mostly clear and I have also experienced improvement with my other symptoms, like more energy, less anxiety, etc. I'm back to living life and my skin isn't a major issue.

4. Tips for anyone who might be suffering from the same issue? 

TSW takes time, absolutely, but I would highly recommend looking into root causes vs. trying every cream and lotion, or spending years waiting for it to go away on it's own.  It might be an external symptom of something else going on! It helped me to zoom out and look at my skin as part of the picture of my health as a whole.

***Jessica has also been doing a limbic system/brain retraining program to help deal with the trauma of the mold and (T)SW. More information can be found (here).***

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Thank you so much to Jody, Amanda, Alice and Jessica for being part of this post and for sharing their experiences – you're all amazing <3 

If you are concerned about mould exposure and would like to look into this further, whilst there are no tests out there that show when you may have been exposed to mould, your doctor should be able to check for a mould allergy by doing a blood or skin prick test. 

There are many ways to kill mould in your home – one of the most common is by using bleach, but popular natural alternatives include baking soda and vinegar. 

Because everything in the treatment of skin conditions should be about seeking root causes and prevention, the most common ways to control the spread of mould in your home etc. are:

• Having good ventilation to minimise moisture and prevent mould growth.
• Fixing any leaks and building issues.
• Ensure that you have a good heating/cooling system.
• Make sure there is adequate air circulation around mattresses and furniture etc. 
• Keep humidity levels under control. A decent level is between 30% and 60%.

I would like to end by saying again that this post is shared in order to shine a light on a subject which desperately needs light on it in the hopes it can stop people from suffering. 

Here's to a future where medical professionals look for answers and not masks. 

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: The Nipples (here)

Let's Talk About: Pregnancy (here)

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The (T)SW doctor

Imagine a doctor looked at your skin and said, “Well, patient X, you have a dependency to the medication that doctors like myself have prescribed you. Even though you used the medication exactly as directed, I’m afraid that you have developed an iatrogenic condition.

“But don’t worry, you’re going to be OK, what you are going through is totally normal and, most importantly, temporary. Therefore, I am prescribing you Netflix, to be taken visually, and 100g of chocolate, to be taken orally. Take baths as needed, take no baths as needed. Use moisturiser as needed, use no moisturiser as needed, because I’m afraid this part is down to you. You might not realise this, and it’s something we rarely acknowledge, but one size in medicine doesn’t fit all, and I can’t get inside your body to know what will work for you. But know that I am here for you, I will never gaslight you, and I will never call what you have eczema, because an iatrogenic condition and a skin condition are two separate things. 

“I believe that a number of my colleagues have called you ‘steroid phobic’, and I can only apologise on their behalf for choosing to ignore symptoms which are as clear as day. I fear that my colleagues need to get their heads out of medical textbooks and instead use their intuition.

“Please do contact me if you are concerned about anything, like a suspected infection, but if not, come back and see me in one month, and if you haven’t made an improvement by then … I wouldn’t expect you to because healing isn’t linear. 

“Find joy where you can, seek distractions, not cures, and get off that bloody phone because you shouldn’t compare yourself to anyone else.

“I wish you well, patient X, and I am here for you, I believe you and, most importantly, you are not alone … and the doubt you are likely feeling is unfortunately part of this process.”

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I might not be a doctor, but I am someone who went through what you’re going through and got better, and this is what I’d say to anyone going through withdrawal right now. 

Withdrawal is awful. It’s one of the worst things most of us will ever have to go through in our life, but it is temporary.

Sending love and healing, always,

Cara x

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Let's Talk About: The nipples

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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.

* * *

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)

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Knock Down Ginger

Before this blog returns to its (T)SW/Trichotillomania natural habitat, I wanted to share a little bit more book-related news with you all.

Around the same time that I published my Weighting to Live series (here), I also published a short story called Knock Down Ginger which is available to download exclusively on Amazon NOW! The cover is another beauty by Bailey from Bailey Designs Books (here), who also designed the covers for my Weighting to Live series.

The book is based on my own experience of growing up with red hair, but sadly the reality doesn't include a cute boy next door like this short story does. For some reason, having red hair has become this socially acceptable thing to bully and the fallout can leave mental scars, which was certainly the case for me, and it took a long time to accept and like the colour of my hair. I actually found it very healing writing this story and I hope you enjoy reading it. Here is the blurb for Knock Down Ginger:

The boy next door has seven days to try and change a fifteen-year-old girl’s mind about her hair, and he will knock down ginger until he succeeds. 

A short story about identity, courage, and young love.

​

Available exclusively on Amazon now.

For next next five days it will be completely FREE to download. There is no catch or thing that you need to do in order to get it free – you just need to download it like you would any other ebook on Amazon and voila! 

Links to Knock Down Ginger by country:

UK (here)

US (here)

Canada (here)

Australia (here)

Germany (here)

France (here)

India (here)

Spain (here)

Italy (here)

Netherlands (here)

Japan (here)

Brazil (here)

Mexico (here)

I promise my next post will be focussed solely on (T)SW – I'm actually currently working on two (T)SW blog posts which I really hope you find helpful. 

As always, I am sending lots of love and healing your way.

Cara x

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Weighting to Live

 

This is not a (T)SW-related blog post, but a little FYI to share that I have republished my Weighting to Live series which is available now! Whilst it has nothing to do with (T)SW, the series was written whilst I was in the throes of the second year of withdrawal. There are four books in the series: Weighting to Live, which was written during NaNoWriMo (National Novel Writing Month) in November 2014, Changes and Sixteen Months, which were written in early 2015, and Plus Uno, which was written a few years later in 2018. There is also The Final Chapters which is essentially Changes, Sixteen Months and Plus Uno in one book!

I cannot stress enough how much writing got me through withdrawal. At the time of working on this series, not only were my physical symptoms awful, but my mental health was in a really bad place and I was riddled with doubt, anxiety and fear that I was doing the wrong thing. To anyone who has been toying with the idea of writing, I urge you to give it a go as you might be surprised what happens when you do. Writing can be healing in its own way and during a process like (T)SW, incredibly cathartic. 

Because of its part in helping me through (T)SW, and also the fact it was the first set of books I ever published, I will always have a fondness for them. After trying desperately for years to do the covers myself, I finally caved and enlisted someone who knew what they were doing, and so I'd like to thank Bailey from Bailey Designs Books (here) for covers which I've completely fallen in love with, and also my wonderful mum who helped me with the editing <3

I would definitely class this series as Women's Fiction/Chick Lit, so bear that in mind! Below, I have shared a little blurb for each book, and also the links (broken down by country) to get them, but like the broken record that I am, please please please don't put yourself under any financial strain, and only if you like the sound of the series and have the means to. I literally had no money during withdrawal. I am sharing the series for those who have enjoyed my other books and would like to read them ... and *psst* the first book in the series is completely free to download!!

WEIGHTING TO LIVE

Can she stop living for tomorrow?

She can’t wait to finally start living, but first she must lose the weight and stop pulling out her eyebrows then everything will be perfect.

Weighting to Live follows one woman’s struggle to stop living for tomorrow in the midst of the illness of her beloved grandmother, a miserable boss, a crazy family, inner demons, and a lack of self-belief.

And just wait until you meet Nigel …

A cosy, heart-warming story that will make you laugh and cry (and sometimes even at the same time).

Links to Weighting to Live by country:

UK

eBook (here)

Paperback (here)

US

eBook (here)

Paperback (here)

Canada

eBook (here)

Paperback (here)

Australia

eBook (here)

Paperback (here)

Germany

eBook (here)

Paperback (here)

France

eBook (here)

Paperback (here)

India

eBook (here)

Spain

eBook (here)

Paperback (here)

Italy

eBook (here)

Paperback (here)

Netherlands

eBook (here)

Paperback (here)

Japan

eBook (here)

Paperback (here)

Brazil

eBook (here)

Mexico

eBook (here)

CHANGES

Four short stories. Four people whose lives are about to change.

A companion to Cara Ward’s debut novel, Weighting to Live, which focuses on four characters from the book.

Open the pages and discover another side of Mary Rose, follow Italian Aunt as she tries to avoid temptation amidst the glittering world of amateur dramatics, fall for Scottish Cousin who writes a letter that will change the course of his life, and see April (formally known as Bee) try to learn forgiveness from a stranger who is not all that she seems.

They are standalone stories, but it is advised that you read Weighting to Live first as there are spoilers.

A thoughtful collection of short stories about life and the choices we make.

Available exclusively on Amazon now.

Links to Changes by country:

UK (here)

US (here)

Canada (here)

Australia (here)

Germany (here)

France (here)

India (here)

Spain (here)

Italy (here)

Netherlands (here)

Japan (here)

Brazil (here)

Mexico (here)

SIXTEEN MONTHS

Find out what happens after she stopped Weighting to Live.

One mistake she can’t even remember and her whole world is turned upside down. She might have stopped living for tomorrow, but she’s got a whole lot more to learn today.

A quick but moving read about love, new beginnings … and a cat called Nigel.

Available exclusively on Amazon now.

Links to Sixteen Months by country:

UK (here)

US (here)

Canada (here)

Australia (here)

Germany (here)

France (here)

India (here)

Spain (here)

Italy (here)

Netherlands (here)

Japan (here)

Brazil (here)

Mexico (here)

PLUS UNO

Just when you think you have everything figured out, one faulty sunbed changes everything.

Follow ‘Italian’ aunt on one final adventure ...

The conclusion to Cara Ward’s Weighting to Live series (in no more than thirty minutes)..

Available exclusively on Amazon now.

Links to Plus Uno by country:

UK (here)

US (here)

Canada (here)

Australia (here)

Germany (here)

France (here)

India (here)

Spain (here)

Italy (here)

Netherlands (here)

Japan (here)

Brazil (here)

Mexico (here)

THE FINAL CHAPTERS

Changes, Sixteen Months, and Plus Uno in one book

The Final Chapters is a collection of three books on love, life, and the choices we make from Cara Ward’s Weighting to Live series.

​

The book starts with Changes, a collection of short stories about four people whose lives are about to change. Next is the novelette, Sixteen Months, where we find out what happens after she stopped Weighting to Live. Finally, there is Plus Uno, a short story which follows ‘Italian’ aunt on one final adventure ...

 

A collection not to be missed.

Links to The Final Chapters by country:

UK

eBook (here)

Paperback (here)

US

eBook (here)

Paperback (here)

Canada

eBook (here)

Paperback (here)

Australia

eBook (here)

Paperback (here)

Germany

eBook (here)

Paperback (here)

France

eBook (here)

Paperback (here)

India

eBook (here)

Spain

eBook (here)

Paperback (here)

Italy

eBook (here)

Paperback (here)

Netherlands

eBook (here)

Paperback (here)

Japan

eBook (here)

Paperback (here)

Brazil

eBook (here)

Mexico

eBook (here)

If you end up reading them, I really hope you like them, and I promise regular (T)SW blogging will be back very soon – I have two (T)SW posts coming in the next few weeks which I hope you will find helpful, so until then, as always, I am sending you love and healing. 

Cara x

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