I hope you are all doing as well as can be. 🙏🏻 I’ve had a couple of months of not feeling great both physically and emotionally - my anxiety went through the roof after a bad upset, so much so I had to seek help for it and am slowly improving. So I hope you don’t mind but I thought I’d share some of my ailments with you. A problem shared……
As well as nausea and bowel upsets since October, with umpteen blood tests etc to investigate, I’ve had a lot of discomfort ‘downstairs’ for the last few weeks, so our new female GP told me to see her for an examination yesterday morning. On examination she said straight away that I have Lichen Sclerosus Atrophicus, a rare condition found in less than 1% of post-menopausal women. 😩 I like to be different, but that really is a bit OTT!
Because it is rare she asked if she could bring in the student doctor to see it, as he’d never likely see it again. I reluctantly agreed and she asked him what could happen if it was left untreated. He said infection, but she said that over 10 years if untreated the cells are likely to become cancerous. 😳 So she’s given me Dermavate ointment that I’ve to use twice daily for 2 weeks and then twice weekly after that. If it bleeds again or any of the other symptoms worsen I’ve to tell her straight away and she’ll refer me to the Gynaecologist. I’ve also to be examined every year from now on to look for any changes.
So I’ve been reading a bit about it since and it seems it is more common in women with an auto-immune condition. That figures. A few symptoms it mentions, like difficulty passing urine, that I’ve experienced for a few years and have reported to my usual GP should have given her a clue given my age, being well post-menopausal (went through menopause in early - mid 40s) and having SLE. Oh well, our new Dr has discovered it now so I hope I’ll be okay with the appropriate treatment.
Just wondering if anybody can offer any advice or reassurance ? Wish you could all join me for a nice cuppa. ☕️☕️☕️ It’s made.🫖 I knitted the old-fashioned cosy recently. Hope it brings back happy memories for some who have seen or owned one similar. 😁
Thanks to you all. Stay safe and as well as you can . 💕🤗😘xxxx
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Spotty-ewe
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Hi Spotty. So sorry to hear all your recent problems. I have heard of your condition as my mum had it. I didn’t know she had it until she developed dementia at age 84 and I then had to accompany her to appointments. Hers was treated successfully at Edinburgh Royal. I would think it’s very uncomfortable so I hope you get some relief quickly. It’s also interesting to hear of the autoimmune link as I don’t think that was ever mentioned. Good luck with the treatment and I hope you feel more like yourself soon. Sending hugs 🤗 and love ❤️.
Hi Barbara, Sorry to hear your Mum had to too but great to hear it was successfully treated. Was it a gynaecologist who treated it or a dermatologist? The main symptom folks have seems to be itchiness which I haven’t had but it is uncomfortable although not painful. Thanks for your hugs and kind wishes. Much appreciated. I hope you are keeping okay? Love and hugs to you too 💕🤗xx
Thanks Barbara. Oh your poor Mum - itchiness is the worst thing. I have a lot of discomfort, especially when needing the toilet, but so far no itchiness. Hopefully I’ll be referred to the gynaecologist before long. 🤞 Take care. 🤗😘xx
Oh bless your heart. I send you Humungous Cwtches. How horrible for you. Hoorah for the young GP who took the time to examine you. I have not had what you have but have suffered with vaginal atrophy for years. Burning, itching, pain, excruciating smear tests. I have also had ( and am having) nausea and problems with my gut and toilet issues. It makes life tip from bearable to downright miserable. I would dearly love a cuppa with you to put the world to rights. Easier said than done but try and keep your head up. Someone is listening and trying to help. I am always around on chat if you need to vent or need a shoulder. Xxx
Mmm, I feel better already for the catches. Thank you so much Cecily. I know about the excruciating smear tests too 😩 - our nurses have given up on me and pass me back to my GP who is really good at them. I’ve been prescribed Vagifem and Replens for years now which I use twice weekly and they have helped but it was when I’ve been unable to insert them I realised there was a real problem. This is what is has been. 🙄 Many thanks for your understanding and offer of lending an ear Cecily. So kind when you are going through so much yourself. Take care, and when you can come on over for a cuppa. Love and hugs 💖 🤗🤗xx
I am on Vagifen but the Replens just burns too much for me so I am now on Hylofemme and the difference is huge. My chemist took a very long time to get it in stock but now that I have it I have far less UTI’s. I love your tea cosy my Nan used to make them and let me do the pin pins xxx
I haven’t heard of Hylofemme before but will mention it to my GP 👍🏻although so far I seem to manage on the Replens. 🤞 Glad you like the tea cosy Cecily. My neighbour asked me to knit one for her in cream and a pale green, but I chose colours that wouldn’t show the tea stains so much.😉 It really keeps the tea warm too. 👍🏻👍🏻 xxx
Hi Spotty 🤗Don't u just love it when that happens? "Hmmm..I've got a student here..do u mind if he has a gander?" Problem is they then discuss it while you're probably wishing the ground would open up!! That's how I feel anyway!!
I'll join u for a cuppa hen!! ☕Can I have a herbal please? 😹Your teacosy reminds me of my nan 💜
At least u know what you're dealing with..it's always a shock n we have to let that sink in..n then we go into warrior mode don't we? It's the Lupie life.
The only advice I can pass on is that I had a couple of lesions on my lady garden n I used Dermovate ointment..it cleared them up pretty quickly. However I had a dermy appt couple of weeks ago n mentioned what had happened. The dermy said that coz of the thin delicate tissues down there she would suggest something milder..she prescribed Eumovate..a milder steroid ointment.
You described perfectly how it felt with the student present. 😃😁I’ll put the kettle on again and I have plenty of fruit and herbal teas, so no worries there. 😋 Glad the tea cosy brought back memories of your Nan.👍🏻👍🏻 Thanks for the tip about Eumovate. I’ll ask the GP about it. Thanks for your hugs and your concern Doll. Look after yourself . 🤗🤗😘💕🐏xx
Hi, I have LS and use clobastil steroid ointment which helps immediately. To start with I used it for three months then twice weekly then only when it flares. With regards to being related to AI conditions I’ve read on various medical sites that it’s likely. Mi e started during menopause, I have some scarred tissue but it’s manageable. It always flares when Stills Disease (RA) does. Feel free to pm if you want graphic details 😉
Many thanks for that Stills.👍🏻👍🏻 Is your condition managed by a gynaecologist or dermatologist? It seems to vary so I’m just wondering. Thanks for your kind offer to PM you. I might do that if I have any concerns or questions. Thank you. Elida and Coco both recommended the same link, so I’m going to look at that. If I get puzzled or want to know more I’ll be in touch. Thanks again. Take care. 🤗😘xxx
Well reading all these other replies I’m a lot more worried about it now than I was before. I’m wondering if LS is the same as your diagnosis of LSA or if they are two different things.Any way try not to worry too much and enjoy a cuppa from that lovely hot tea pot 😄
I think they are the same condition just the A standing for atrophicus indicates mine is atrophying just as my right kidney is. Puts a whole new meaning on the ‘walking dead’!😆 Anyway, I’m sorry if my post has caused extra worry for you. From what I can gather as long as it is successfully treated, as yours appears to be and hopefully mine will be, there isn’t anything to worry about. I also understand the medics keep an eye on things so if anything untoward starts up it will be spotted. I’ve just made a fresh brew of tea if you fancy a cup? 😉 Take care. 🤗xx
😄that made me smile.I’ve found not wearing jeans helps or any trousers at all actually and I have tights with cotton gussets that don’t irritate. I’m sorry that you have to endure this along with all the other stuff and hope it gets under control quickly.
Because of recurring cystitis for many many years I tended to not wear tight-fitting trousers either and rarely wear tights. Although I’m sorry to hear others on here have the horrible condition too, it is a definite comfort to know I’m not alone and I’ve learned so much from others experiences. 👍🏻👍🏻Right, just about to pour out the tea☕️☕️, and I have a plate ready for the biscuits. 😉 xx
Thanks so much for your concern, hugs, prayers and healing thoughts EJ. 👍🏻👍🏻 It is wonderful to have your support and that of others here.🥰 It really helps. I hope you are keeping okay Honey? Love and hugs to you and thanks again dear friend. 🙏🏻🤗😘💕xx
Hi BL, I appreciate your support and understanding. Thank goodness for this wonderful forum and the love, support and advice we get here. I feel so much better thanks to you and others. Thank you for your kind thoughts and hugs. Hugs of gratitude back to you. 🤗😘xxx
🤦🏼♀️Sorry you’ve got this going on too…you’ve got great replies, so not much for me to usefully add except to say that my LS was diagnosed in the early 2000s (shortly after my mother was diagnosed with the worst case of LS her gyn practice had ever seen…she’d been thinking it was yeast infection for 20 years, poor darling). Luckily mine was caught early, but my gyn oncology chief is very cautious about monitoring it. I’m longterm on daily dermovate + bidet baths in solutions of the antimicrobial emolliant emulsiderm…& these + prescrip Replens vag moisturiser keep my LS reasonably well behaved .- I get all this on repeat prescrips forever & ever. LS very very very seldom goes into remission
There’s some good advice etc on the SRUK website..here’s the link:
Hi Coco,Thanks so much for the reassurance of your own experience and that of your mother.👍🏻👍🏻 I read that diagnosis was often delayed through patient or even doctor assuming it was a yeast infection. But mine has never been itchy just uncomfortable and for about a month now I’ve had difficulty in inserting Vagifem and Replens. 😩 We have a bidet at home so I will ask GP about the antimicrobial emollient emulsiderm. Many thanks for that. And thanks for the SRUK website too. 👍🏻👍🏻 Elida of Lupus UK has sent me that link too via PM in reply to this post. I’ll look at it shortly. Many thanks again for your help and advice Coco especially when you are going through so very much yourself. I really appreciate it. 😘 I think of you whenever I take a chewy ginger Gin Gins for the awful nausea I sometimes have. They really help. ☺️ Love and hugs to you Coco. 💕🙏🏻🤗😘xxx
😍Ah, you sweet dear thing! You always help me smile & try to be my best self: I think you’re heroic!
👍 Am confident you’ll get your LS to behave…replens helping you already encourages me to think emulsiderm could be a very useful trick for you too .- it was my gyn who told my GP to keep me on emulsiderm
In the SRUK advices, you’ll notice it’s best to avoid soaps of any kind affecting you down there…well, emulsiderm soaks do give a lovely clean feeling, I find. I also gave up baths & swimming…just stick to showers - but when I could still take holidays I sometimes did have to give in to baths which didn’t cause any real flares so long as I kept away from soap & continued the dermovate, replens , emulsiderm thing. I discovered Weleda Calendula shower wash didn’t’ aggravate my LS so I only use that - but don’t apply it directly to undercarriage 💞💞💞💞
This is a good summary - when my LS was first diagnosed all those years ago, experts were still uncertain it’s autoimmune! Since then the science on this has advanced, but, as you’ll read here, there's still doubt re exactly what sort of condition LS is. My gyn onc chief loved to remind me of this!
That’s interesting Coco. I wonder if it will ever be confirmed one way or the other? It seems to be generally suspected to be related to AI conditions from what I’ve read, but it sounds like more research is needed. Xx
Yes👍 Have been following the science on LS for nearly 20 years & v slowly the boffins have come round to admitting LS involves inflammatory process & seems autoimmune.
I was on an excellent USA LS forum for many years learning a lot from very shrewd expert LS patients…they loved comparing whatever diagnoses they had other than LS. By far THE most common of the AID diagnoses they shared was AID hypothyroidism aka hashimotos (both my mother & sister gave both hashimotos & LS, but my thyroid blood tests have always resulted within normal range).
In my years here & on SRUK forum, there have been only a few folk posting about LS. Because my mix of manifestations features several that are very scleroderma-ish (ie LS + the childood onset severe Raynauds + my progressively debilitating mouth to exit GI conditions which respond pos to my lupus meds + etc etc), every now & then, I pop my medics this question: could my AID/CTD mix include a pinch of some sorta scleroderma? In response, they never do more than look blank. Of course, my Antibody Deficiency Disease means I’m sero negative for all my AIDs which doesn’t help with confirming any scleroderma-ish aspects to my 🦓ness
Basically, LS research moves v slowly due to underfunding: it’s just not one of the rare conditions that attracts investors & scientists 🤷🏼♀️ 💞
It must have been VERY interesting and informative being on that US LA forum. I have to say the Americans seem to be far ahead of us on most things medical. I’ve found some of their sites very helpful from things to do with Lupus to physiotherapy for hip bursitis. 👍🏻👍🏻Interesting what you said about your thyroid blood tests. Despite having half of mine removed in my 30s due to a haemorrhagic cyst, my tests on the remaining half have always been normal too. 🤷🏼♀️ Definitely more LS research and its association with AID is needed. Let’s hope some Lottery winner will invest in such a project.🙏🏻🤞💕
Aww thank you Coco. I don’t know what I’ve done to deserve such lovely praise but thank you. 🥰 I’ve always found your posts and replies so informative, helpful and indeed an inspiration. You go through so much without complaint and are always there to offer support and advice whatever you are facing yourself. As somebody once said to me, “If you help somebody when you are struggling yourself, that isn’t help, it’s love.”💕 So thanks for your love Coco.Ive looked at the SRUK site and it is VERY helpful. I’d stopped baths and swimming years ago because of recurrent UTIs for which I’m on a prophylactic antibiotic now as they found my right kidney, which is atrophying and stuck to other internal organs, to be the cause. I tried sourcing waterproof swimwear but even the intontinent swimming shorts I bought didn’t stop the pool water reaching parts I didn’t want it to, so I abandoned the idea. I’ve always thought if I was somewhere on holiday where the sea is warm I’d try a swim in the sea. But for a number of years I’ve not felt up to flying anywhere for a number of reasons (too many to go into) so it is unlikely to happen now. But as a child growing up in Australia the warm sea water seemed to soothe a multitude of ailments. ☺️
I threw the soap out today and used aqueous cream at the bidet but will get a phone appt with the GP on Monday to clarify a few things and will ask for emulsiderm at the same time. I’ll look out for the Weleda Calendula too. 👍🏻👍🏻Thanks for the advice and tips. Take care Coco. 🤗😘💕
Maybe just me, but my vulva literally SCREAMS in reaction to aqueous & barrier creams etc of ALL sorts. Many LS patients I’ve encountered on LS forums react very badly to aqueous creams. Emollients like Emulsiderm seem to be safer & suit us much better 🤷🏼♀️
I’ll bear that in mind. I’m quite sore at present anyway so look forward to something that will soothe. I’m sure I read on one of the websites that Aqueous cream was good to use as a soap alternative,🤔 which is why I used it today. Hopefully after Monday I’ll have some Emulsiderm. 🤞Looking forward to it. 🤗x
👍 yes sometimes some LS folk can tolerate aqueous cream, but don’t ever manage to realise that others really can’t. this kinda diff between 🦓s just happens 🤷🏼♀️…& You’re v experienced so skilled at recognising when something doesn’t agree with you! ❤️🍀
Hi Spotty I’m so sorry to hear of all your upsets especially the latest one, sounds very sore, I wish I could tell you some advice but sadly I can’t but am sending you a huge 🤗 hug and lots of love 💕
I love your tea cosy , I’m knitting a jumper for a standard schnauzer so quite abit bigger than my wee little mini schnauzers. Xx
Hi SV, Thank you so much for your love and support. That is the best medicine 🥰 and means so much to me. 👍🏻 I’ve had some wonderful advice and info on here from those who know, so it has been so very helpful and reassuring. Glad you like the tea cosy, and please let us see your knitted jumper for the standard schnauzer once you finish it. Love and hugs 🤗😘xxx
Hello lovely spotty . I feel the same way re my adrenals. No way have i ever wanted to be so different in life and yet my body is determined to say i must be. All i longed for was a normal life but its not to be. Might get the message one day!. Its lovely how we can process this together because we understand so well.
Im so very sorry you've really been thru it recently and i think its wonderful you felt you could share on forum. That might encourage others and i hope it helps you. Thats a very brave decision you've made spotty!. These intimate examinations are very gruelling and that was a specially tough one. We're very vulnerable at this time and they must be handled properly. I hope it was for you.
My mum has been diagnosed with it so it may not be as rare as you think. She had a really good response to the treatment as hers was very mild. I hope yours does the same as the last thing you need is another tricky auto-immune illness. I will keep my 🤞for you.
Sending lots of love and healing thoughtwaves for a happy, safe weekend. Thanx so much for your lovely message. Will reply after my appt's next week. Xx❤🤞❤😀💐🤞
Hello dear Misty, I’m so sorry you feel so poorly with your adrenals on top of everything else.😩 We are all unique, but what a way to feel different and unique! 🤨 Never mind, there are always folk much worse off than ourselves. A Lupy pal encouraged me to post and I’m SO glad I did with the wonderful response I’ve had.👍🏻👍🏻 I’m SO grateful to everybody for their support and love. 🥰 It helps so much.Very encouraging to hear your Mum responded so well to the treatment.👏🏻👏🏻 Thanks for your kind wishes and healing thoughts Misty.😘 Good luck with your appts next week.🙏🏻 I’ll be thinking of you. 🤗😘💕xxx
Im so pleased spotty you've had such a good response to your post. Its wonderful we have such a supportive forum. I do agree there are always many people far worse off than us. Forum also helps us keep grounded with things in perspective.
I do still feel better at the mo but know that with adrenals it's more ongoing with the fatigue. We all know in ourselves when things aren't right. Just got to prove it which is why i probably won't get far down the steroid reduction. That was lovely to know that more people were ok on 4th jabs. Thank you. I just hope i am. 🤞.
Also, going thru early menopause like we both have is enough to have to cope with and think about.
Do hope you feel better soon spotty and ill be in touch. Lots of tlc. Xx🤗❤
Thank you Misty. Yes we are most definitely lucky to have such a supportive forum ‘family’ here on this site and always here for us. It is such a comfort.🥰I hope your fatigue gradually lifts Misty and that you too feel better soon.🙏🏻 Best not to fight it and just go with the flow.
Thanks again for your support and your TLC. I send the same back to you with many healing hugs. 🤗🤗🤗💕😘xxx
Meant to add I also have Interstitial Cystitis which CAN be related to other AI conditions according to my gyne consultant.We are quite special aren’t we!
Oh dear, you poor thing. That sounds very painful and on top of the LS is quite challenging. I’m so sorry to hear that. Yes, we are unusual to say the least and special cases for sure. We keep the medics on their toes. 😉 xx
Hello spotty-ewe, sorry you’ve had such a hard time, so tough with our diseases then to get another one on top ☹️
I have had lichen sclerosus for over 40 years. I was one of the few people to get as a young child rather than post menopause. It wasn’t officially diagnosed until a biopsy in my teens and then much much relieved with dermovate.
So I had many years of it untreated with it itching, ripping, bleeding, scarring etc and similar warnings you received that it could turn cancerous if not controlled with my risks high because I’d had so young - but I have annual checks and been ok so far cancer-wise and most people will be fine as long as control the inflammation and check regularly.
In fact mine has been well controlled last few years by the high steroids I’ve needed for the lupus. After 40 years and the years untreated I’m quite scarred in that area and the skin is white, very fragile and bleeds easily. They operated in my early 20s to try to make more comfortable for sex and I had 3 children but it always ripped and now too damaged (but I’m too tired from the lupus anyway! 🙄🤣)
I was told by the gynaecologist when she finally diagnosed it (after years of visits with a ‘sore front bottom’!) that I would almost certainly develop another autoimmune disease later and to live my life to the full before that and have babies as soon as possible.
And she was right as then developed lupus in my 30s.
There’s quite a lot of us with both and like lupus it can flare and also vary from mild to severe. If yours is really uncomfortable currently the dermovate should definitively help and once controlled may only need occasionally. It can be unpleasant and painful but compared to the life changing nature of lupus, much more liveable with and controllable.
If it’s just a GP that’s diagnosed you should see a dermatologist or gynaecologist for a definite diagnosis. A biopsy there sounds horrible but was fine. And regular follow ups. Sometimes we’re put under gynae - oncology due to potential cancer risks which really freaked me out when I got the appointment but it’s just precautionary. I’m fact when I saw the gynae- oncologist he was very reassuring and said it rarely progresses to cancer these days with quicker diagnosis, better steroids, monitoring etc.
And to cheer you up, I had an embarrassing incident at my last check, where it was a new (very handsome) male Italian consultant who went to find the nurse to chaperone and couldn’t find one as running very late. As it was so late I thought no one else was there so I poked my head out of the door and shouted to him down into the main clinic where he was looking around ‘oh don’t worry about a chaperone, I’ve been showing my front bottom to people (meaning doctors of course but didn’t quite manage to phrase correctly! 😬🤣) for years, I’m not at all bothered’
He looked at me quite mortified and then looked beside at a… full waiting room of people! 😱🤣 Some laughed, some highly embarrassed for me. This was dermatology rather than gynae so they probably thought I was just a very crazy lady showing her front bottom…
And another time I walked out of the examination, felt a bit strange and ‘airy’ and realised I’d left my knickers on the doctors chair 😱🤣 - and had to do the walk of shame back. Grabbed them and walked out and the doctor said in a long suffering way ‘do you think you might need your shoes too’? As I’d also left them 🙄 The dermatologist now thinks I’ve got brain problems and speaks very slowly… 🤣 xx
🤣🤣🤣 What a story Melba! You have cheered me up! I’m so sorry to hear you’ve had the condition for so long but I’m pleased you had your children even with having to go through so much. I didn’t manage to hold on to mine due to Hughe’s Syndrome (sticky blood) which they didn’t know about in in the north of Scotland in those days, nor indeed Lupus generally. Thanks for the reassurance. That has helped enormously. Evidently I have areas of white plaque which the doctor recognised immediately, but I’m going to ask her about a referral and biopsy to be absolutley certain. Thanks for being so open and detailed about your experiences, but then I wouldn’t expect anything else from somebody who leaves her knickers on the doctor’s chair! 😂😂😂 Thanks for the laugh and reassuarnce in equal measures Melba. Hoping you are keeping okay at present? Stay safe. 🤗😘xxx
Hi Spotty-ewe, so sorry you’re having such a rough time of it, it’s miserable when things aren’t right with our lady bits, I do hope the treatment helps, I haven’t been diagnosed with anything like that but I do get very sore from time to time (not thrush), I was given dermovate which helped a lot, I find coconut oil is really helpful and I wouldn’t be without vagifem and ovestin cream either. I’m finally getting my surgery on 22nd March after several cancellations which I feel mentally frayed from!.
I love the tea cosy😍, it takes me right back to both my Nan’s kitchens , they always had the same keeping their brown teapots warm… happy memories of simpler times🥰.
I do hope things improve for you soon and you can be much more comfortable 🙏
Hi Diane, So pleased to hear you have a date for your op and I hope and pray it goes ahead this time. 🙏🏻 That must have created such an emotional roller coaster thinking it was happening only to have it cancelled again. 😔 I’ll be praying it happens this time so you can feel the benefit of the op and move forward with your life. 🙏🏻Thanks for your support and understanding. Yes, I have used Vagifem and Replens for many years now and feel the difference if I forget to use them.😩 Sorry you have discomfort too. But there’s some extra excellent advice on here regarding the use of soap substitutes and other things to improve comfort. I’ll give the coconut oil a go too. 👍🏻👍🏻 Thanks Diane.
Glad you liked the tea cosy and that it brought back some memories for you. I was thrilled when my neighbour asked me to knit one for her because I was able to use her pattern to make one for myself afterwards. 😉 They are so efficient in keeping the tea warm and fun to make.
How is your flock of sheep coming on?
Lovely to hear from you Diane. Keep safe. 🙏🏻 🤗😘🐏☕️☕️🫖xxx
Thank you so much for your good wishes for my op 🙏. I’ll be glad to get it over with so recovery can start, although I want it done with I’m also very nervous about it too and any complications afterwards and the worst thing is my urogynaecologist is leaving the NHS in April , he’s the only one we have here that works across our two hospitals , so that worries me about my aftercare as he’s a highly thought of and successful surgeon and my lovely Gynae nurse has left too, it’s a worry for all those women on the waiting lists as it’s specialist surgery😞!
As for the knitting, my granddaughters love the little sheep and the little mouse in a basket and my daughter now has a little lamb on her desk at work 😆🐑
I’m now knitting a little elephant with a variety of clothes, it’s a challenge as it’s quite a complicated pattern but I’m getting there slowly, it keeps my brain a bit active and it’s nice to be a bit productive in the evenings, I feel like I’ve achieved something… you see what you started and it’s all good 👍😃
Please take care too, lovely to chat here and hope the sun is shining for you 🥰🧶🐑 🐘 🐭 xxxx
Oh no, that’s a worry when you had a good relationship and respect for your gynaecologist and gynae nurse who won’t be around for your post op care. 🥺 Might be worth finding out all you can pre-op and hopefully if you meet the new Gynae nurse before the op you’ll feel happier about things. 🙏🏻 I hope so anyway Diane.🤞 Keep positive.
I’m so pleased you’ve caught the knitting bug and that many family members are benefitting from the lovely things you are creating.👍🏻👍🏻 I can’t watch TV without knitting or crocheting as it seems such a waste of time if I’m not. 😆 Keeps my mind off of other things too and as you say you get a sense of achievement when you’ve finished.👍🏻 Keep it up and let us see the wee elephant and his wardrobe of clothes when you finish.
Thanks Spotty, I have met the other Gynae nurses and they’re all lovely but I took to this one 😞Yes I have lots of questions for my consultant, I need to know I’ll get the care I need especially if I have any problems post op, it’s all a big nerve wracking but yes trying to stay positive 🙏
I can’t remember if I showed you the mouse in a basket but here they all are again. Might be a while before I finish the elephant but will be sure to show you .
I did see a couple of your sheep Diane and one little mouse but I see they have multiplied now and they are all adorable and each with their own individuality. 😍 Just lovely. 🥰 Well done. That’s good news that you have met all the gynae nurses and that they are all nice, but yes I know what you mean when you click with one in particular and now she’s gone. As long as you go armed with your list of questions I’m sure you’ll receive the reassurance you need regarding your post-op care without your highly respected surgeon around after April. But at least he’ll be there for the procedure so you can rest assured you’ll be in safe hands for the op.👍🏻👍🏻 Try not to worry (easier said than done, I know) and hopefully you’ll feel happier about it all once you’ve spoken with your consultant.
Take care and I look forward to seeing the elephant once you have finished. Hugs 🤗🤗😘💕💐🐭🐭🐑🐏🐘xx
I’m so glad you got started on the knitting. 👍🏻👍🏻 It is bringing so much pleasure to many. 🥰 Knitting and crochet are the sort of bugs I like to pass on to others! 🤣🤣 🤗🤗😘💕💕💕xxx
Hi Spotty-ewe, I'm so sorry to hear you've been having such a rubbish time of it. Sorry I can't help with your problems (they have made me think, though), but I had to come and comment to say that I LOVE your tea-cosy! Do you take orders? ❤️😉
Hi WL, Thanks for your support. I appreciate that. 🥰 Thanks too for loving my tea cosy. It was fun to make and luckily fitted my teapot prefectly.👍🏻👍🏻 Keep safe. 🤗😘xx
Hi there! Both my best friend and her mother had this condition. My friend suffered many other autoimmune symptoms and was very close to being diagnosed with MS. She cured herself of everything with a whole food plant based diet. I don't have the self discipline she does, but I've been eating several WFPB meals per week and drinking green smoothies as often as possible for a year and my thyroid antibodies came down from 400s and 500s to single and double digits. So, that's my advice of what to try! If I get any more tips from her regarding Lichens, I'll pass it on.Best wishes,
Hi Melanie, that’s very interesting. What does WFPB stand for? I’ll Google it to see. Very soon I’ve to start the FODMAP diet with the help of a dietician, but if it doesn’t have the desired effect I’ll give WFPB a go. Many thanks for sharing and yes please, if you get any more tips from your friend re LS I’d love to hear. Thanks again. 🤗😘xx
It means whole food plant based. Everything you eat must come from the ground. No animal products including eggs, honey and dairy. No oil, no refined white sugar and no salt, technically. My friend still eats salt, though, she just reduced it. There's a ton of YouTube videos and channels dedicated to this and vegan eating. Try finding the documentary "Game Changers".
I am so sorry that you are going through all of this, but glad that you have some answers and will get good treatment that will help you get through it. It seems that our immune system can truly do anything and so hard to separate what happen in our bodies. It is a godsend when we get an answer.
I love the tea cozy. You do beautiful work. I am so glad you shared.
Thank you so much Pumpkin for your kind thoughts and wishes.🥰 Yes, our immune systems constantly surprise us, but the symptoms keep us hanging on for an answer until finally we meet the right doctor who recognises it for what it is. I still have a few symptoms awaiting diagnosis like the bowel issues which GP suspects is IBS, but one step at a time.Glad you like the tea cozy - thank you.👍🏻
Hoping you are keeping okay at present? 🙏🏻 Take care. 🤗😘xx
I have to comment on the bowel issues. Without going into detail, I had issues and then after getting Covid Nov. 2020, they are constant. i am thinking it is like a Mast Cell / histamine issue and may see an immunologist/allergist - just hate to go through more tests and another specialist. But, I think that IBS is a catch all when the gastro has no idea what is happening. Also, how much again is it an immune issue misunderstood. Just my thoughts. Wishing you all the best.
I think you could well be right. I’m not convinced I have IBS myself but as all blood tests and bowel screening came back normal my GP suspects it might be IBS so wants me to try the FODMAP diet to see if I’m intolerant to any common foods. Just waiting for the dietician to get in touch.I hope you get to the bottom of your bowel issues (excuse the pun) as they can be very unpleasant and affect our quality of life. Worth getting a medical opinion I would say. Take care of yourself Pumpkin. 🤗😘xx
So sorry to hear about what you have been through☹️
Wikipedia quotes research suggesting steroids minimize cancer risk - no cases when patient was compliant taking right amount: en.wikipedia.org/wiki/Liche...
This forum has seemed a bit quiet the last few weeks (been wondering why..and worrying) - now folk back in force.
Thanks so much for posting. It seems LS is far less rare for lupies - should be documented more. Hope things go much much better now, with treatment etc. Take care 🤗😘xx
PS. I have blue and white teapot cover - same pattern
Hi SC, Lovely to hear from you. Thank you for your kind thoughts and for the Wikipedia link which is reassuring. 👍🏻👍🏻 The WFPB diet sounds great and I’ll discuss it with the dietician when I eventually see her re my bowel problems. I’m not a big meat eater and have vegetarian dishes at least twice per week, so it sounds like it would suit me too. 😋I’m glad my post has raised awareness of LS which I’d never heard of either before being diagnosed with it on Thursday. And it isn’t restricted to females either. I suppose it is a potentially embarrassing condition for many to discuss which is perhaps why it isn’t documented more.🤷🏼♀️ But I’m so glad I’ve posted because the support, reassurance, advice and tips have been so valuable to me. I’m so grateful.
A blue and white tea cosy in the same pattern as mine sounds lovely.👌
Re: Bowels. Pharmacist here suggested to me Whole-Foods, Plant-Based (WFPB) diet. I have had issues since having covid (March 2020) so relate to Pumpkin. The last couple of weeks I have been feasting lentil burgers, vegetable laden nut roast and non-chicken samosas (very low sat fat foods - vegan counter) with mixture of other veg alongside on the plate. The food seems tasty. I don't miss the meat.
Sounds lovely. 😋 I’m not a big meat-eater either and eat vegetarian dishes at least twice per week. So if the FODMAP diet doesn’t help me I’ll ask the dietician about WFPB. Thanks SC. Take care. 🤗😘xx
Late to this post. I have had LS for 25 years, just diagnosed 3 years ago. My treatment is similar to yours and that of others. For years, it was treated as a yeast infection. You will heal from the steroids.
Thanks for sharing your experience Joaclp. 👍🏻 What a terribly long time to have had it treated as a yeast infection. 😬 Hoping you are feeling the benefit of the right treatment now. 🙏🏻 Many thanks for your reassurance. Take care. 🤗😘xx
I have LS, diagnosed about 5 years ago but have had recurring thrush, Cystitis and UTIs since the year I was diagnosed with Stills Disease. Reading your post only just made me realise the connection. I may have had LS for years, mistreated and mis diagnosed. In my mid 20s my family GP told me my problem (down there) was an incompatible PH balance with my husband sperm!During peri menopause I was once given Canestan vaginal pessary which stay up there undissolved for a week, I could feel it burning me inside, awful. It’s now controlled with steroid cream thank goodness.
Oh how horrible for you Stills. 😩 SO painful! Misdiagnosis and mistreatment, often for many years, seem to be a common thread for us Lupies. ☹️ I’m so glad you are getting the right treatment at long last. Hugs 🤗🤗xxx
I am so thankful for everything I’ve learned from fellow sufferers on this forum. I’m also a bit resentful that for 40 years I thought I had constant thrush etc. I also had a coil fitted for about 7 years which was also blamed for the constant red sore blisters I now know to be LS. A brief google search indicates AI involvement with LS and IC so it’s beyond me that it’s never been picked up before given that I have a diagnosis of Stills. I also now realise the connection with urinary incontinence and constipation which are among LS symptoms.Anyway enough rant from me, at least we are getting g treatment now. How are you feeling?
I fully understand your frustration and resentment Stills. 40 years is a long time!! 😩 My usual GP (now senior doctor in the practice) has always done my smear tests and of course knows about my Lupus yet when I told her of my difficulty passing urine and my bowel problems (especially constipation!) over the last few years she never put 2 and 2 together. 🙄 Thankfully our new female GP spotted it straight away and knew what it was when she saw the plaque and how to treat it. Better late than never I suppose. 😄 But what I resent the most is the loss of my 2 babies at 20 and 22 weeks (41 and 42 years ago) because I have sticky blood caused by the Antiphospholipid syndrome, which was unheard of in those days in the north of Scotland where I lived. All I’d needed was an aspirin a day (which I have to take now) and my sons would have gone full term. I’ve remained childless all my life due to a severe pelvic infection following the loss of the second son which has prevented me conceiving again. Thank goodness I trained as a primary teacher so had many happy years teaching 5 - 12 year old children especially in 1 teacher schools on the islands where I had a strong bond with my pupils 🥰 until I had to give up due to ill health (the Lupus, although it wasn’t diagnosed as such at that point). But with the help of counselling for this and other matters I try not to let it eat me and find pleasure in other things like my crafts, writing and this wonderful forum. Here we are able to share our experiences and feelings with those who truly understand and that in itself is a blessing. We are all here to help each other and it is lovely.👍🏻👍🏻 Thanks for your help and concern Stills. I’m feeling not too bad but I’ll have a phone appt with my GP tomorrow to clrify a few points and to see if I can obtain some of the recommended items mentioned in this post.🤞 I’ve enjoyed our chat. Hoping you are keeping okay yourself at present. 🙏🏻Take care. 🤗😘💕xx
Don’t know much about this, although I’ve been having incontinence issues that I thought were down to my cough, but now that’s pretty much cleared up and I’m still a Tena lady, seeing my rheumatologist on Tuesday so going to mention it to her.
I just wanted to say though, please don’t ever be reluctant to allow in students. They all have to learn somewhere, and if they’re interested in our problems then that’s a good thing! It means better understanding and empathy from the new generation of doctors.
I was asked recently if I’d talk to a couple of students who were interested in mental health issues. I said yes. I was told it’d be half hour max. I told them I had all day if they needed it. I’ve welcomed student nurses and doctors to anything they want to participate in. I’ve had several student nurses do their first smear test on me. I had a student midwife present when I had my son, a student doctor present when I had issues in that pregnancy, and a student midwife took me through premature labour with my stillborn daughter (she was the best midwife you could ever hope to meet).
If someone wants to know more about a rare condition you have, welcome them with open arms, no matter which part of the body it is 😉 And that fact that you allowed it, even if you weren’t sure, is simply awesome. That student will go away armed with some knowledge, but more importantly, hopefully, a need to research and find out more 😘
I agree it is always good to welcome students who want to learn but to bear your most intimate areas to a young male student isn’t easy. It was the thought that he might never see the condition again, as my GP pointed out, that persuaded me to go ahead, and she dashed out to fetch him quickly before I changed my mind! 🤣 I’m also taking part in 2 research projects about ANA and Lupus so am hopefully doing my part. I’m sure all the students you had present at various medical procedures will be grateful for the opportunity you offered them. I’m SO sorry to hear about your stillborn daughter. I lost 2 sons at 20 weeks and 22 weeks so sympathise with you. I’m pleased you had your son successfully. Good idea to mention your incontinence when you see your Rheumy on Tuesday.👍🏻 Better to be safe than sorry. Take care BF. 🤗😘xx
It is hard. But they have to learn somewhere. In that situation just remember how much you’re giving to society by allowing them that access to something that is so hard to give. What an amazing person you are for doing that.
I’m so sorry about your sons. Losing one child at that stage was hard enough l, I can’t begin to imagine losing two.
I actually forgot to mention the incontinence. She started me on mycophenolate that day, so I was more concerned with making sure I took that info on board. I’m not neurotypical so I need to concentrate really hard on processing that kind of information.
It’s on my list though, and she did say I can email her if I need to, so maybe I’ll do that. I’ve already emailed her with a whole backstory of my medical history though, including photos 🤣 (I forget stuff because it’s become so normal, so I answer no to questions and then remember afterwards it should have been a yes) so maybe I’ll leave it a few days lol.
Thanks for your understanding BF. Yes, losing my 2 boys was devastating especially as I was unable to conceive after the massive general pelvic injection I had following losing my second. And if only they’d known about ‘sticky blood’ in those days it would only have taken an aspirin a day to prevent this happening. That fact has left me wounded for life.You sound just like me forgetting to mention certain symptoms at an appt or saying yes when it should be no or vice versa. That’s why I always took hubby with me whenever possible and he’d interject with ‘You have experienced that!’ or ‘Don’t forget to mention …..’ But now that they don’t allow him to come in with me I forget a lot. Having access to your Rheumy by e-mail is brilliant and if you just say you’d forgotten to mention the incontinence I’m sure they’ll quite understand given the circumstances. Take care BF. 🤗😘xx
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I’m deaf! 
Can you get diagnosed with sle then again to be not diagnosed l am very dissapionted in the rheumy doctor
I need to get this off my chest then I can sleep! 
All I want for Christmas is good news! (and less stress)
Has anyone hear got TNF receptor associated periodic syndrome.
