I have decided to start a new series of posts, which I will be adding to over time, discussing all the parts of TSW that aren't discussed enough. Sometimes, by not talking about something, it creates embarrassment or confusion around it, when really it is just another thing that you *might* have to deal with during TSW ('might' because we are all different and your experience is not someone else's). The problem with anything to do with the whole genital area though is that it's so personal, which makes it difficult to talk openly about any problems we might experience down there. I'm the same. In the past when I've had thrush, my conversation with the pharmacist is in hushed tones, with occasional covert glances over my shoulder to check that no one is listening. That's a failing on my part and honestly, after working on this post, it's really made me review how I'll talk about certain things in the future because it all needs to be normalised. That goes for periods, too – BECAUSE THEY HAPPEN. The other problem with surrounding a subject with secrecy is that it means others will end up feeling like they are the only ones suffering, when it couldn't be further from the truth. Especially with TSW, as there is literally no one else we can turn to, so we have to help each other out where we can.
Apart from one day during TSW where I was so irritated around my vagina (which made the whole area a little swollen) I didn't really experience any symptoms down there, and I've never really mentioned it before because it was just one day out of a nearly 27 month withdrawal – and to be honest, I'd forgotten about it until recently when I started hearing others briefly mention irritation there, too.
When I mentioned that I was going to be doing this post, I couldn't believe how many people had suffered, or were suffering, with symptoms on or around the genitals. I was also staggered by other people's kindness and willingness to share their experiences with me – all in the hope of trying to help others. These accounts all come from members of our community, and I would like to take a moment to thank each and every one of them for sharing so much information with me for the post. You are truly wonderful x
There are twelve female experiences and four male. I will start with the accounts from the women, then the men. To give you more of an idea, I will also be putting a general age range (i.e. 18-24) for each person.
Lastly, I wanted to mention that the symptoms you are experiencing could be nothing to do with TSW, and the last thing you should do is write them off if you are concerned they could be something else. This post is just to say that TSW can happen on or around around the genitals, too, and you aren't alone. After all, the skin is one organ.
Also, as per, just a little reminder that I am not a medical professional and anything shared in this is not intended as medical advice.
WOMEN
When I mentioned I was going to be doing this post, a lot of women contacted me to say that they didn't realise they could actually get TSW symptoms down there, and any irritation they had experienced, they had put down to thrush or something else. Another woman also got in touch to say that her skin was thinner there and tearing so easily, especially after sex.
Woman #1 (18-24)
Steroid history: I have used steroids on and off since I was little for my eczema. Maybe Fucibet and then hydrocortisone on my face in later years, primarily the last 5 years.
I only suffered with eczema down there once or twice and used fucibet on the groin area maybe once or twice, too.
I started getting TSW down there after my first month of withdrawal. It started off just on my groin area as red patches in areas you would normally sweat. It soon progressed further in, down and around to my bum! The skin would cycle similarly to other areas, from being open and sore to being so painfully dry I could barley walk. I tried not putting cream on and then putting it on regularly. It’s still something I suffer with today, especially when the area gets warm, but isn’t as bad as the beginning.
Advice: when cuts are open, Dead Sea salt baths helped take the itch out and dried it up. I think too much cream down there just adds to the heat of an already warm area and can make agitation worse! So once a day is definitely enough! Wearing loosing pants is a must to stop the irritation and heat!
Woman #2 (45-54)
It was one of my first symptoms, unbearable itching that I knew wasn’t thrush as there was no discharge, no smell. I used to scratch so hard I would bleed. I slept with ice packs between my legs for a good year before I went into TSW. I went to the doctors a few times, but every time they said there was nothing wrong, no sign of lichen sclerosis, which is what I thought it must be...thankfully as that course of treatment is steroids!! No yeast infection, I even had bloods taken for further investigation, but nothing ever showed up. Eventually the doctor put it down to my age. It was also one of the first symptoms to go, within a month of stopping topical steroids, it stopped itching. It was truly horrendous, and completely ruined my sex life, as it got to the point I actually thought I was allergic to my partners sperm.
I don't mind you sharing it if it helps someone not feel so alone and baffled. I haven’t told anyone about it before. When I first started following accounts, no one ever mentioned it, I thought I was just really unlucky. And there’s a lot of shame and embarrassment surrounding anything vaginal, I don’t know if that’s a female thing. And no, I never used steroids there, I literally just put up with it as the doctors didn’t know why it was happening. Just shows how steroids effect the whole body, it’s actually frightening!
Woman #3 (25-34)
Steroid usage, I'd say 20+ years (unknowingly as I was using a “natural herbal” cream). I never used it in that area as far as I’m aware – never had any prior issues there either. Symptoms: I had oozing, inflammation and itched like mad. Obviously I couldn’t wax or shave down there during TSW, so the hair I think might have protected it maybe, but that’s just what I personally think. I’ve been doing moisturiser withdrawal since the beginning so I didn’t put anything on it at all – no creams etc. I just let it dry out. I used to wear no knickers to bed sometimes, and loose clothing to let it air dry, or sometimes even sleep naked, but I feel like the clothing gave it some protection from the bed sheets etc. I had it on the top and the sides (cracks by your leg) of the vagina, but it’s healed now! Had it happen twice during both of my severe flares and it has healed both times! Originally left with some hyperpigmentation which has faded, too! So crazy what our body can do on its own honestly.
Also, just FYI, after the first flare, and it happened, I managed to actually shave down there again with no issues whatsoever (couldn’t wax because Covid and salons weren’t open) so it does get better.
Woman #4 (25-34)
I can’t remember whether I used steroids in that region, but I’m 90% sure I did. I also used Eucrisa, but not there. Before TSW, when I had laser hair removal, they gave me steroids for the itch after (1% hydrocortisone).
My symptoms during TSW: oozing, swelling, redness, itching.
As far as dealing with the symptoms I avoided underwear for almost a year, and still do. I used tampons during my period, so nothing would rub against the area. Sometimes I used cotton cloths to sleep to place in between my legs, and wore no clothes when it was too hot.
***She has also kindly shared some photos (thank you so much x)***
Woman #5 (35-44)
As for my TSW history, it’s not the typical RSS story. I basically had eczema since I was 13 years old, but never used topical steroids on a daily basis ever, and would probably use them 3-4 times a year when my skin was really bad, but not for more than 2 weeks either. Then, in my mid 20s, I changed my diet after seeing a Naturalpath and did not have any eczema issues. Fast forward to when I was 29/30, I started developing all these health issues out of nowhere, such as back pain, food allergies, enlarged lymph nodes, random rashes. I was told I could possibly have lupus and/or another immune disease. They still have not been able to diagnose me! It’s a long complicated health story.
Then, in 2015, they found that I had a parasite and I was given Ivermectin (an antibiotic) to treat it. I took it for two weeks as prescribed then once I stopped it I started to get a full on skin rash, very similar to TSW. I let my body heal on its own for three weeks, but there was one right near my groin area that was not going away, so I went to see two different dermatologists who gave me a very potent topical steroid, level three I think (Clobetasol cream) & Doxycycline FLM. I took it for maybe two or three days and my skin cleared up, but a week later, it came back even worse – that happened another three times. Then I went on Facebook and saw my friend had posted an article of a little boy (Isaiah) who had TSW. I immediately knew I had RSS and booked a flight to California (all gauzed up, oozing in pain) and saw Dr. Rapaport, who within five minutes told me I had RSS/TSW.
As of August 21, 2015, I started my TSW journey and it took me until 2019 to finally have my skin healed and my life back to normal. But unfortunately last year, in March 2020, I was exposed to mould toxicity and given medication for it which basically set my entire body off with a skin flare, since I am sensitive to any chemicals or toxins and pretty much react to any antibiotics. Considering that topical steroids are a chemical/toxin, my body reacts the same way with any type of antibiotics I take. And then this year I had an ear infection and a UTI and was given antibiotics after explaining to doctors that I react to medication, but they didn’t believe me & now I’ve been dealing with a six month skin flare just like TSW, but the worst flare I’ve ever been through. Both antibiotics I took did not have Cortisone, and the creams I use don’t have any topical steroids! I only use vitamin E oil or coconut oil, so it’s crazy that these antibiotics set my body off into a TSW flare.
Long story short, I only used topical steroids on my groin area or genitals one time in 2015 for a few days, but unfortunately my genitals and groin area were severely affected whilst going through TSW. Symptoms included itching, burning, swelling, skin peeling, oozing. I lost my period for 15 months and now going through the flare again I haven’t had a period in five months. Going through my flare now I have not been able to wear any underwear for six months! The only thing that helps is taking baths with apple cider vinegar and Epson salts and applying coconut oil, tea tree oil, vitamin E oil and Colloidal silver to avoid infections. I find the more you apply things on it the worse it is, that’s just my experience. All you can do really is just have patience and let your body heal the same way as the rest of your body parts. Oh & diet plays a huge factor, at least for me it does. Any foods with sugar or high inflammatory or high in histamine will make me flare down there & everywhere!
Now that I've spoken to several doctors they have told me that it wasn’t the steroids that caused everything, since I barely used them, but that my body was deteriorating and when I took the topical steroids, it was the basically the last straw my body could handle, and set my body off into RSS/TSW, which is crazy that a topical steroid I did not use for more than two weeks could have me housebound for over two years!
I lost my hair & had to shave my head three times as I would have oozing consistently for three months straight! And the fact that I’m going through TSW again after not having taken topical steroids, but just by taking antibiotics and reacting to them, shows how toxic antibiotics and creams can be and what they can do to your body, in all areas, including your genitals.
***After sharing her story with me, she then voice noted me to say (and I'm quoting her verbatim because she put it so well!!), "You are welcome to share my story with my name as people should not be ashamed of saying that their genital areas were affected or flared. It's a horrible thing to go through, and the reality is that when you have, or when you are going through, Topical Steroid Withdrawal, or any skin flare, that area can definitely be affected, and it's also very scary. I remember first thinking, what's happening?! I had the swelling and I was freaked out, and then realised that it was just, whatever was going on with the rest of my body, is going on down there and it really sucks.
Thank you to Maria Vrontos (@mariavrontos) for sharing this with me x
Woman #6 (18-24)
TSW around my genitals appeared a little while after I noticed swelling of my lymph nodes. This problem still persists. Swollen lymph nodes is something incredibly unconfortable, especially when I'm lying down. One herbalist mixed a cleansing tea for my lymphatic system so I hope it will get better. Genitals being itchy is a big struggle between you and your mental health because when you scratch it, that's a long healing progress, full of pain. I'm just hoping it will improve over time.
I only ever used steroids down there, just once, when I had vaginal problems, and didn't know what to do to get better so I used steroids and the problems disappeared.
Woman #7 (25-34)
Personally, I've never used any Topical Steroids “down there” for ANY reason ever! Never struggled with eczema there. When TSW started though it was a new ball game. It felt as though my vulva was CONSTANTLY itching and on fire, and I had to quit shaving for a while. It burned when any urine would touch any of the folds and creases between my vagina and inner thighs. My labia even became swollen for an amount of time while going through TSW, and wiping at one point was impossible.
Tips! Quit shaving if necessary: do whatever makes you most comfortable in that region! Also, DON'T WIPE! PAT DRY ONLY! Wiping the skin down there when using the bathroom made it sooo much worse than if I carefully patted dry. Also, spread those legs on the toilet! Do whatever you need to in order to keep the urine off of your skin (for me that was literally torture).
Woman #8 (25-34)
When I had eczema I experienced irritation down there. This was during the period close to TSA (where I became reliant on steroids). I remember I did use steroids there, including the groin area where the torso joins the leg. All these areas were bad during TSW likely because of the lymph nodes there as well. It remains one of the last few places to heal, and although my body feels 70 to 80 percent well, down there continues to be irritated, almost on a daily basis. Embarrassing to share, but I know it will help someone else out there feel less alone, because if you looked at my Insta you would never have guessed it. Nothing much has really helped and I just know it needs time. I try to wear cotton, comfortable underwear – lace feels horrible and I avoid it at all costs.
Woman #9 (35-44)
I used steroids since I was a child (I don’t know what steroid I used when I was young, I just remember a white cream for eczema). Throughout high school and college I just used hydrocortisone. Fast forward to my second pregnancy when I got a bad “eczema flare” (hindsight – I was flaring and had been having flares for a while, but didn’t realise it). Got Triamcinolone from the Derm and used sparingly (I knew it was bad so maybe once a week). After his birth, I had another flare, and started to do research and found TSW. I went back to a Derm in the middle of what I would call my second flare and he made me feel stupid and told me TSW didn’t exist, and I said ok I’ll try steroids one more time and he gave me a class seven steroid (Clobetasol?). It cleared up in like a day, but of course it was back full force immediately. I only used it on my crotch (pubic hair area, and on the crevice near the lymph nodes) when I had razor burn from shaving and only used hydrocortisone there. I couldn’t tell you amount of times, but maybe once a month, or a little more. So my crotch constantly burns, tingles, itches and has a indescribable feeling where I almost have to constantly touch it or scratch it. I have been able to maintain work, but I have had to tell people sorry I have to do this because of the feeling and embarrassingly scratch there at work. I have scratched off all my pubic hair.
I do have some on my labia, and what I will say about that area is that it’s hard to scratch (HA) and that my vagina is very dry. I also have flares around my upper thighs and under my bottom, so it becomes super sore and hard to sit.
It seems to be a nerve pain/itch. Saint Johns wort seems to help a little. I sleep with no underwear and just wear lose clothes all the time. Sometimes ice packs help and scratching with a comb helps, too. No moisturiser has really any affect. Of all body parts, this is one that keeps me from sleeping and annoys me at night.
Woman #10 (25-34)
Life with TSW is unlike any other. Anyone who has experienced it, or is currently going through it, can attest to this. Not everyone knows this, but TSW can affect some of our most private and sensitive regions, even if you never applied steroids to those areas! (Hi, the insides of my eyelids went through TSW).
TSW on your private parts is so uncomfortable and painful. It can feel embarrassing, and be difficult to talk about, especially with medical professionals or a spouse.
You are not alone, this is TSW, and we know healing is not linear. Seek medical help if it's too hard to do alone – I myself, had to have medical gauze and tape in places on my body I never expected to be affected by TSW.
It is not to be ashamed of, and you WILL heal from this. Show your body love and respect for all it is doing for you.
Woman #11 (25-34)
I am a few days away from reaching one year of TSW, and my groin and vulva area are very affected and every day it gets worse. I have gone to the doctors, and one of them told me it was inflamed eczema and another told me it was psoriasis. It worries me since lesions so typical with TSW are not seen.
To my knowledge, I have not put steroids in that area. After my delivery I had problems with the episiotomy and the doctor left me an ointment, I don't know if it had steroids in it – I looked for it, but I can't find it. The only skin problem in that area was mild irritation from the sanitary pad, but nothing serious.
A month after I started going through TSW, that area became very red and inflamed. It was very red, and it stung me a lot, but only to the right of my groin.
I think it's important to comment that I used steroids for many years (I don't know exactly, maybe 5-8 years) on my hands. My hands from month 8 have improved a lot, and are now 90% recovered.
To treat the area, I use zinc cream and cotton to avoid infection, but it doesn't help much with the oozing.
***She has also kindly shared some photos (thank you so much x)***
Woman #12 (25-34)
I've been suffering with some kind of mystery condition for the past 4 or so years, which I'm now pretty sure is TSW. A few years ago I had a bout of thrush. Just normal thrush, nothing unusual. I saw the nurse and she gave me some Canesten which had 1% hydrocortisone in. At the time I thought nothing of it – I was familiar with hydrocortisone as I'd been using it all over my body for my 'eczema' since I could remember. I slapped it on and it cleared up. A month or two later I started to develop papercut-like splits either side of my vulva. Incredibly painful and stinging! Thinking it was thrush again, I put some more Canesten on. This time it took a little longer to go away, but eventually it went. A few weeks later, it came back, the slits deeper and longer than they were before. I went back to see the dr – they gave me some oral thrush tablets this time and told me to take one as well as use the cream.
It's continued in this cycle for the past few years. Every time the splits got bigger and bigger and more and more painful. Anything seemed to set them off. Sometimes I would just be sat down and I'd feel the split actually opening up. One time I sneezed and it happened! I'd go to the chemist or supermarket and buy myself some Fluconazole and some Canesten - sometimes just the normal Canesten, but usually the one with hydrocortisone because I thought it was more effective. (How stupid I feel about that now!) It got to the point where I had these horrible stinging cuts either side of my vulva most of the time. I can't even remember how many times I've been to the dr about it and every time they've sent me away with more pills and more cream. I've had to beg for them to do a swab to check that it's actually thrush, and whenever they've done a swab they've said there's nothing there. Yet they still prescribe thrush pills and cream to "be on the safe side" because it'll apparently get rid of whatever is going on. I've also had tests for diabetes and every STI going, and they all come back clear. It's been driving me mad and nobody seems to be able to help, and it's been so hard trying to get any useful information as nobody wants to talk about it. I've trawled through countless photos of manky fannies online, trying to find the answers, and it's been impossible!
Then, in December 2020, I had my worst "eczema" flair that I've ever had as an adult (what I now realise was probably a TSW flair). I've always had eczema since I can remember and have always been told that that's just how I am – a familiar story for lots of people with TSW! My arms, hands, neck and backs of my legs turned bright red, along with the bone-deep itch. And the slits on my vulva got worse, too, but at this point I didn't make the connection. I still thought that they were a seperate, mystery thing. I went to the drs for my skin – they prescribed more steroids for my "eczema", and when I mentioned that I still had the slits on my vulva they gave me some Daktacort. The dr didn't tell me how to use it or warn me that it was a steroid. Thankfully, I read the leaflet when I got home and was wary of using it on such delicate skin. I didn't open the tube and I'm so glad that I didn't touch it. I'm horrified that they gave it to me to use on my vulva, but even more so that they didn't warn me about the dangers of it at all. Not a word.
In early May this year I decided that I was going to try and get my skin under control by whatever means possible. After searching for eczema tips on Instagram I stumbled across a photo of someone with TSW on their arm. I thought it was a photo of my arm – I actually did a double take thinking it was me. It was insane how similar my skin was. I stopped using steroids immediately and haven't used them since. Now I've started the long process of learning about TSW it's made me wonder if that's really what's been going on, starting off with the innocent-looking hydrocortisone I was given for thrush years ago.
It's been (and continues to be!) the most difficult and embarrassing thing and has made me feel incredibly low at times. I've been with my patient and understanding boyfriend for nearly 10 years, and we haven't been able to have good sex for a long, long time. On the rare occasion that I feel brave enough to give it a go it ends in tears because I'm in too much pain, and I feel incredibly embarrassed and upset – even the night we got engaged earlier this year, which was heartbreaking. It's been an added thing to deal with on top of the physical pain. Of course sex isn't everything, but I do think it's important for our wellbeing and for connecting intimately with our partners. But it's often trivialised. Whenever I told the dr on my countless appointments that sex was painful and I was feeling really low about it, it was usually shrugged off as if it wasn't important, or I was made to feel like some kind of sex-crazed maniac!
MEN
Man A (18-24)
So I started using it when it first started getting itchy a few years ago (hydrocortisone). It would be fine for long periods of time, but come back. Then, in the last year, it was bad more frequently (really itchy) with rashes, and it would flake all around my private area. I then started to use Betnovate around that area, and from August 2020 (ish) it would never fully go away. It got worse in February 2021, with a very itchy and flakey rash. I went to the doctors, they thought it was fungal. I've had the same antibiotics (Flucloxacillin) a few times over the past 10 years, but each time they got less effective. So the antibiotics didn’t work. I used a fungal cream, that didn’t work. Then, I was using literally anything I could get my hands on in panic because it wouldn’t go. Sudacream, Germolene, steroid creams ... but nothing was working. Then, in April, it was my worst month, and I had to take a week off work. Full blown TSW, I couldn’t walk. It was oozing everywhere on my privates and after that I decided to fully commit to TSW as my whole body flared up.
Man B (25-34)
So I did use steroids on my private areas, mainly on the groin area, and if I ever groomed etc, it would get itchy so would apply some, and usually strong stuff like Betnovate.
It has been one of the areas that has really taken its time. Constantly itchy and obviously it doesn’t see the light etc.
At first I would scratch and shed and peel and it was just horrible. It's getting stronger, but still itches a lot and just goes red.
There isn’t anything I really use for relief, nothing seems to work really.
Man C (45-54)
My eczema started at 35.
“Treatment” recommended: Clobetesol applied to affected area 2x daily for 10 days. This did make it go away, but several months later, repeated the above.
4 years later, the sides of my body and other areas of my body where I never applied TS started itching. Yes, this includes the scrotum. I didn’t think anything of it other than perhaps me being allergic to something in the air as it seemed to happen during season changes. Anyhow, I continued to apply steroids, or get it injected or take the internal steroid, as that did temporarily relive the itching and such, but it always came back. CeraVe and Vanicream seemed to help the itch some, but still itchy on the sides of my body and scrotum area. The itch seems to be sub-dermal, if that make sense.
Age now: 45
I got led to this TSW Facebook group and only now realise all that I experienced above seems to be TSW and minor RSS, so I've been steroid free for about 2 months. I am trying to do NMT as much as I can, but on my hands it’s difficult as I can’t open and close them without the skin breaking.
Man D (18-24)
My entire body – even today – is effected by TSW, including my genitals. The severity of my skin seems to lessen the further down my body you go, with my scalp, face, arms and torso being particularly bad, whilst my feet and ankles look more like a normal eczema flare up than TSW. My genitals, then, are probably what most would think of as a mild case of TSW; red and flaky, but not especially weepy and without any cracks in the skin or raw patches.
I say ‘not especially weepy’ as that area has been known to weep, but very rarely and only when I’ve really attacked it during an itch-fest, usually due to over-heating under the duvet at night. I would say that of that area, my testicles and anus are the least effected, with neither being itchy, my penis is almost always red and can be quite itchy, and the creases in my groin as well as the area connecting the anus and the scrotum – apparently called the perineum, thanks, Google – can get quite hot and itchy.
I haven’t had penetrative sex for as long as I’ve been dealing with TSW, but during my time on cyclosplorine there were a few moments of some relief when I was on the receiving end of oral sex and I did notice that after this my penis would be especially dry and red. TSW has, surprisingly, never really effected my sex drive, and I suspect that masturbation may account for the difference in quality of skin between my penis and testicles.
I’ve spoken to guys about the issue of underwear in the past and most seem to prefer going commando for comfort, but I’ve always liked the feeling of wearing underwear, I feel like cotton boxer-briefs or briefs help to wick away some of the moisture in the creases. I’ve also spoken to guys who have large thighs and/or large genitals and they seem to exacerbate moisture and itchiness around the groin.
For the record, I never applied any topical steroids or Protopic on or around my genitals, and only very rarely moisturised the area.
Man E (25-34) *This account was sent to me in late 2022, which can also be found in my LET'S TALK ABOUT: PROTOPIC (TACROLIMUS) post (here)*
*I'm currently 33 years old, and I started using tacrolimus ointment when I was 28. I had developed a dry red rash on my penis and went to numerous doctors before seeing a dermatologist. The doctors tested me for STDs (the test came back negative, and I was tested again to be sure) and prescribed me triamcinolone, which was only mildly effective, and tried treating me for fungal infections, which didn’t help, before I saw the dermatologist. I was also in a long-term relationship at the time, and my partner was fine.
I had a biopsy taken, and the results didn’t really show much except for a lack of melanin. My dermatologist diagnosed me with vitiligo with inflammation and prescribed me 1% tacrolimus ointment. I wanted a second opinion, so I saw another dermatologist, and she said it was genital psoriasis. Protopic was deemed to be the solution to both problems.
I used it for about 5 years, and over time it was becoming less effective and my condition was spreading. I kept having to use more of it, and I was applying it daily, sometimes twice a day. I was worried something else was wrong with me that was only being masked by the Protopic, so I decided I was going to stop using it in February 2022. My dermatologist was pretty dismissive of my concerns, assured me it was vitiligo, and prescribed me desonide. I saw a urologist during this time also, and he didn’t have any answers for me either. I used the desonide some, but I didn’t want to put anything on it, so I stopped everything. It was about two weeks later that my psoriasis got really bad on my penis, and it was very red and bumpy. Over the next month, it got much worse: red, bumpy, swollen, oozing, and scabbing. I had pain, trouble urinating, and the folds of my skin were fusing together. I didn’t really know what was going on, I thought I had some disease that was repressed by the Protopic, and now it was back with a vengeance. I was just determined to leave my body to fight it. I only just realized that it was TSW that I was going through.
After about 2 months off the tacrolimus and steroids, I started to see improvements. It would get better for a while, then worse, but the first two months were by far the worst. I got a new dermatologist during this time, and he never mentioned anything about TSW. He didn’t know what it was, or what to do, and just told me to put Vaseline on it, which I did for a month then stopped. It’s now November 1, 2022, and my condition is doing quite well. I’d say it’s better than it was before I started taking the tacrolimus. I think I’m pretty much over the TSW now, and I’m just dealing with the original psoriasis like symptoms. I have started eating better, drinking less, and I quit smoking. Currently, I’m thinking that cigarettes caused my psoriasis or made it worse. I was never a heavy smoker, I just smoked moderately, sometimes once a day, sometimes none, sometimes up to around 3 on the weekends. I’m honestly quite embarrassed that it seems like I have gone through all this suffering for an occasional cigarette. Anyways, I’m feeling optimistic that eventually I can go back to completely normal, but time will tell. I feel very fortunate that I didn’t use Protopic in other places, and it has been a fairly fast recovery.
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The most depressing part of it all was that I didn't know what was happening. I was looking up a lot of stuff, and thought the tacrolimus was suppressing some other disease and it was coming back really strong after stopping the tacrolimus. I was determined to try and let my body fight off whatever was happening to me on its own. I didn't know about TSW or Tacrolimus withdrawal, and my dermatologists didn't tell me about either. It was scary not knowing what was happening.A few weeks later, X contacted me to say that his skin is flaring right now and he’s feeling pretty demoralized as he thought it was over. He said, I mean, I know a lot of other people have it much worse, but it just really sucks to have this issue where I do as a man.
A little point I wanted to add is that whilst symptoms vary and range from full body to more isolated areas, suffering is suffering, and the mental toll of it can be devastating, no matter how small the area. But, to anyone reading, just look at what can happen with time, and how quickly things can change. Hold on x
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Thank you so much again to everyone who shared their experiences with me <3
Working on this post has made me fall in love with our ever-growing community a million times more (didn't know it was possible), and I hope it has shown how so little of this could ever be called anything other than TSW. TSW is raw and unpredictable and painful, but it does get better eventually.
Together, we will create change, and one day our experiences will mean that others won't have to suffer.
It will all get better in time x
Other posts in the series:
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: Mould/Mold (here)
Let's Talk About: Pregnancy (here)
