Because of the shame or embarrassment sometimes involved in talking about vulvar or vaginal symptoms, I have not really gone into depth with my Rheumatologist. I am just wondering whether anyone has any tips of how to soothe:-
Burning of the vagina or vulvaI
Itchy vulva or vagina
I am also going through menopause, 50 last month. I do have HRT patches, creams etc.
I was thinking of more natural remedies.
I have come across Dysautonomia in Sjogren's which I will discuss further with Doctor next week. I will follow up with my Rheumatologist.
Thank you for any feedback. It will be most appreciated.
I think you should go to your GP, and if possible see a female GP. As first opinion practioners this will be a common problem for them.
As it's itchy I think you need to rule out thrush. The pain could also be due to a peripheral neuropathy which can be very painful but shouldn't be itchy.
Estradiol pessaries can help with genital dryness and as they're applied locally there is minimal if any systemic absorption. I have sjogrens and always believed that I couldn't do anything about the dryness but I found the pessary helped.
Only clean the area with water and try to avoid tight fitting clothing.
I do use Vagirux which helps and have a female HRT doctor.
I feel this is related to changes within the nervous system (Dysautonomia in Sjogren's) which I will be discussing further as tests to confirm if ANS system is out of synchronisation. The ANS is responsible for maintaining balance of the involuntary body functions. Furthermore, my symptoms have worsened
esophagus and intestinal motility (muscle movement)
bladder function, increased urination frequency
secretory glands including decreased lacrimation, salivation, and mucus production
sweating, increased or decreased and heat intolerance
respiration (breathing in and/or out)
I wonder if you have any experience of these symptoms?
I will be using treatment for thrush to rule this out. However, I notice that this area gets sore an awful lot. Also after intimacy.
I will take your advice with only to clean area with water, as only use FemFresh usually with no problems. I did use fancy Hotel posh products when away recently but were all natural ingredients.
Has Lichen Sclerosus/ LS been excluded properly I wonder as this is lead cause of a very itchy vulval area I believe? It’s thought to be autoimmune and is quite a common extra to Sjogren’s.
I don’t have diagnosis of LS or itching but I do suffer periods of “provoked vulvodynia” due, apparently to architectural abnormities caused by traumatic deliveries decades ago. I found this very hard to explain to my non GI doctors, although all are female and perfectly kind.
However the last episode and a vulval biopsy last year helped me to become less squeamish and embarrassed about referencing my undercarriage - which is good job asmy systemic sclerosis has badly damaged my lower GI/ small and large bowel. I still squirm when I have to reference my ongoing bowel stuff, including incontinence, with my specialists, apart from the pelvic floor team. The pelvic floor physio discharged me after 5 sessions saying i’d clearly had LS and am very hypermobile but have no pelvic floor dysfunction at all as others had presumed. I did tell her about small fibre neuropathy and she agreed probably a better name for my flares than the non specific vulvodynia.
I learnt from a vulval dermatologist that neuropathy (itching or pain) issues in vulval area can be caused by cervical/ neck disc damage - which I also suffer from.
My problem is opposite to yours. My rheumatologist and colleagues have always tried to blame presumed SFN and autonomic neuropathy of Sjogren’s for all my problems. I finally sought a fresh perspective from a renowned scleroderma expert in London, who confirmed that systemic sclerosis was my main disease 100% - but agreed I have associated Sjogren’s. He also diagnosed EDS affecting my skin, masking the skin changes. He suggested I likely have related MCAS.
I told my own rheumatologist all of this and am now waiting for genetic tests to clarify if I have a rarer subtype or hEDS. In her latest letter, my rheumatologist, a lupus specialist, is back on her home turf of referencing Sjogren’s and EDS related POTS and MCAS in her referral letter - slight eye roll!
I guess what I’m trying to say is that there are many potential causes to invisible itching, including spinal disease, small fibre neuropathy and sclerotic skin diseases. What our consultants tend to focus on is the area they specialise in and this is understandable. So mine is very skewed towards and in her element with neuro Lupus/ Sjogren’s and skin stuff but seems less comfortable with discussing my severe scleroderma GI and fibrotic changes associated with scleroderma. That’s okay for me overall but it means I have to keep informed because systemic sclerosis is rarer than Lupus or Sjogren’s.
Final thing - a reminder that none of this is shameful! All rheumatologists have general medicine training first and are used to talking about body functions - including those affecting intimate areas. This is what I keep reminding myself about at least!
Every time you post OldTed60, I always think "oh my god, that's sounds like me!" I know what you mean about becoming less squeamish - I've had that many examinations now, I've got used to it. I still don't like talking about it with other consultants though, for fear it'll reinforce that everything is down to depression (ie. "in my head")
FridaN in turn when you post or comment I always breathe a sigh of relief that, so far, I don’t have any form of mental health condition listed. I don’t think the medical profession realise quite how ready they are as a body, to opt for confirmation bias, rather than relying on solid evidence to exclude any AI disease. I can be entirely open with my rheumy about my anxieties and fears around my diagnosed diseases and she will talk openly about emotional well-being and any neuro psychiatric issues her patients might have.
But tail end stuff and embarassing washing machine and tumble dryer noises my GI system randomly exudes are just 🥺🤦🏼♀️ to describe or try to explain. Let alone 💩! She listened to my heart and breathing 5 weeks ago and then looked perplexed and asked me how I’m getting on with my Rifaxamin for SIBO. I knew from this that all she’d heard was the extraordinary noses my gut makes these days!
So my case ive not had to endure the “all of the mind” type bias at all as you very sadly have. And my rheumy, neurologist, gastroenterologist and dermatologist are all great female drs.
But equally I’ve learnt in a busy clinic when a patient finds it difficult to be direct about symptoms relating to intimate areas then this leaves plenty of room for misunderstandings on both sides.
The thing that was so good about seeing this scleroderma Professor at Royal Free hospital was that he came entirely fresh to my case and his only agenda was to decide if I had the clinical signs of scleroderma. And this was easily evidenced by him with complete authority after 40 years of working with scleroderma patients. Bowels were built in to the scleroderma discussion as was lichenous stuff and my struggle to empty bladder due to vulval skin thickening affecting my urethra. He just nodded and said yes lots of his patients suffer from these.
TBH it was a huge relief not to hear anything being attributed to Sjogren’s SFN and POTs - neither of which have ever been clinically confirmed although I’m many years lip biopsy positive for Sjogren’s but he felt this was associated rather than primary - as previously assumed X
Thanks Megs but I don’t think she was meaning I’d be tested for MCAS just EDS subtypes. I think perhaps immunologists and haematologists are not keen on MCAS label as this may mean other causes of symptoms are missed? In my case it’s already covered under “multiple allergies” with list of known causes. She would have left EDS as JHD on my list of diagnoses if a lower GI surgeon hadnt written to her calling it EDS and outlining risks associated with a planned ileostomy v risks of disease progression leading to emergency unplanned admissions and surgery while immunesuppressed.
I’m not sure I even specified MCAS to her - certainly not POTs, but she has mentioned both in context of hEDS in her referral to the genetics department.
Prof D implied I have a genetic predisposition to allergies and autoimmune diseases, very much fitting with his experience of patients carrying my rare SSc antibody and history of exposure to chemical toxins. This page on the SRUK shows him talking about possible causes of SSc - and I’m assuming this likely applies to others inc Lupus. X
Gosh, you really do have a very complex list of dx's!!
I totally agree that Drs are afraid of addressing MCAS, maybe because it's not well understood?? In my case, the most my new GP would do (sadly, my 5* one retired recently) was request an Ig's screen (I'm usually below normal range for IgM). This time I was borderline low for IgM, IgG and IgA, which he said was 'satisfactory, so a referral to immunology was unnecessary. I think there is a test for MCAS which is fairly specific but technically demanding and probably difficult to interpret. I also have many allergies, particularly to insect bites.
I was very probably exposed to low levels of many chemicals during my working life. My Drs have questioned me about this but, of course, it's impossible to say which chemicals/ how much. The Drs just don't know whether this could have had an influence on my health.
Gosh this is my subject. Had what you have for over a year. I'm 53. Don't be embarrassed, you need help. See your gp and rheumatologist ASAP. I let it go for a few weeks when the itching was bad last year and scratched, burned like the fires of hell. Couldn't sleep, screamed when I wee. It had turned into s staphylococcus infection. Needed strong antibiotics. I'm having investigations re dysautonomia. I'm waiting for a dermatology appointment who have a specialist Vulva clinic. I'm also getting a nerve conduction test next month. All I can say is advice from gp and rhuemy helped immensely a real combination. Stay clean down below, keep air circulating, try not to wear trousers much, try and buy organic cotton pants, use organic panty liners, I have a pH neutral vaginal moisturiser (balance activ) I use twice a day. At night I have prescription Dermovate steroid cream which stopped the itch almost completely. Other less strong steroid creams didn't work. I have internal estrogen pessaries and internal vaginal moisturiser. Don't bath just shower most of the time and use pH neutral soap sparingly. Having sjogrens our vaginal skin is extra thin and can tear easy which causes infections so no scratching! If you need a quick help then vagisil wipes were so soothing or the cream numbs for a while. I can no longer have sex as it just tears my insides. It's so awful dealing with this but getting help and taking precautions has eased everything so much. Sorry its such a long list but it's taken so many things to get this under control but honestly you can. Please see your gp and rheumy and you can stop suffering, honestly. Xxx
Some women get the itch with just menopause but add Sjogrens and its itch x 100 and with me it got to being 24 hour non stop until the steroid cream. They may try a milder steroid first like Betnovate which may work for you but I needed the full monty which is the Dermovate like magic its just about stopped. I was worried about long term steroid use but the GP said the benefits outweigh the downside at least until I get to Dermatology. There is also a cream which has a little antibiotic in if you get infected called Trimovate which I used along with oral antibiotics a while ago. Anyway suffice to say you need an armory of creams etc to battle this one. I have some notes of a conference about this subject my Rheumatologist gave me which are very helpful. She is one of the top Sjogrens experts in the country, Dr. Elizabeth Price. If you like I can email them to you for a look. Just private message me. xx
I think you’re describing lichen sclerosus rather than Sjögren’s maybe because this is highly itchy skin thickening and is treated with strong cortosteroid ointments? I could be wrong though because in my case it was pain more than itch and I think the itch is eczema and lichen planus in my case.
There was a great presentation from a vulval skin gynae at the Sjögren’s U.K. (formerly BSSA) conference in Birmingham a week ago today. She mentioned all three skin conditions and atrophy are common findings in Sjögren’s and can all affect the gynae and bum areas - all but atrophy - treated with strong topical steroids.
I'll look and see if the BSSA conference is online yet. I went last year as it was in Swindon and I'm only down the road. I have had lichen planus on my ankle, but this i'm not sure, as there were white lesions and bleeding skin and swelling up even though I was careful not to scratch after the first time but my goodness scratching is the best thing at the time, so relieving but hell after! I get itch, pain when its bad, burning wee, and a vulva that feels like sandpaper is being applied to it. No sleep and hit the roof when I wee. Menopause is the monster in the mix too. Hopefully dermatology will send an appointment soon. I am very reluctant to let the steroid cream go now it works so well and at my age the GP said that you thicken up down there anyway so a bit of steroid skin thinning won't matter much. Honestly what we have to go through and none of it shows to anyone, we look fine but in agony sometimes. Thanks for the info, hopefully you are under control now.
they are changing name to Sjogren’s UK now and other major changes in progress in order to modernise - so it might take a while to come online as they have a new website too apparently.
At last. Compared to lupus uk they are woefully lacking tech wise. Seeing as there are so many with sjogrens and loads undiagnosed, they need to raise their profile. It will help gps and nurses understand more too. 👍
Fully agree - although mine is now classed as “associated”. Various things I’m concerned about regarding other stuff they spoke about at their AGM - but their mags are ace and their helpline is tops, and also all are paid former nurses with Sjogren’s. I even phone them when I’m stressed about my scleroderma.
I am in the same boat and totally concur with dg70. Following these guidelines I now only very rarely have to use dermovate cream but I have stuck to the regime of only showers, never using soap or gel down below, and only washing with Dermol 500. My saviour has been Double base gel which I apply as and when needed. I was diagnosed with lichen sclerosus by a consultant gynaecologist after many registrars scratched their heads, about 15 years ago.
Hello Energy14. I had the same symptoms as yourself in 2019. It took me a while to go get checked out. I asked for a female GP to make it easier. I actually thought that I had thrush. As soon as the GP saw it she had an idea its was Lichen sclerosus but said she wanted me to be checked out by gynecology to rule any thing more sinister out. My appointment came within days to be seen the next week. Anyway I went to the appointment and it was a male gynaecologist! He said he wanted to be sure so booked me in for some biopsies a few days later. I had those and then had to wait for 6 weeks for the results which was a positive for Lichen sclerosus. I had been given some strong steroid cream to apply twice a day for 3 months which helped massively. Now when I get a flare up I use the cream for about a week and it clears up. I use aqueous cream as a soap substitute as using shower gels is a big no no for me! If I were you I'd get it checked out as soon as you can. It won't clear up on its own.
Yes you can still be intimate while using the cream. In fact it can help, having intercourse can cause some splitting of the skin but using cream helps that. I have flare ups but keep on top of it with clobetasol cream and it soon gets back under control.
Hi Energy 14. I have been unable to get intimate since diagnosis. It's just too painful. You may find using condoms helps! I did for a while. I meant to say, using cotton undies and plain, unscented panty liners helps. Not the well known brands but Tescos or Sainsbury's own are best. The others all bring my symptoms back something rotten!
I know this sounds bonkers and it’s a small thing but I listened to a talk from Elizabeth Price and she said be careful with knickers pants 🩲 . Dye is used to make them black and I have noticed a little improvement in symptoms since wearing white or nude.
I do sympathise with you and I had to go to sexual health clinic as 👨🏻⚕️ didn’t know what was causing my ulcers . I was mortified but then I thought do you know what it’s not my fault I’ve got crappy autoimmune stuff . So now I’m not embarrassed discussing my symptoms “downstairs “
You’ve had some great responses but I just wanted to add about 🩲. Take care xx
I'm so relieved to see others talking about this, as it's something I've dealt with for many years and on the very few occasions I've tried to mention it to friends it quickly became clear it was too awkward to discuss. I'm also embarrassed to bring it up at other medical appointments, partly because of the nature of it, but also how the medical professionals dealt with it when it first started.
I started with intense burning pain when I was about 28 years old and initially was really worried it was thrush and the GP made me panic about all kinds of STIs (even though the chances of me getting one was incredibly slim, the shame of it made me extremely anxious). All swabs were negative and subsequent ones, as there have been many, have all been negative. I was told for about 7 years it was due to mental health problems until finally a locum GP took pity on me and referred me to gynaecology. They said it was vulvodynia, likely down to some kind of nerve damage, but the actual cause could never be pinpointed. I've had it for about 15 years now and don't have any current treatment for it, as I didn't want to take Pregabalin or Gabapentin. I wash with Dermol and just find it's there all the time, but when it's at a low level I can block it out, to some extent. I tested negative for Sjögrens antibodies, but the oral symptoms seem to very much match. I'd say I have the extreme opposite problem of dryness "down there" and every time I have an examination they think it's thrush, but it isn't. Eventually I got fed up with going to the GP about it, but it does still worry me.
In recent years I'm now experiencing all these other problems that point toward something autoimmune and I read posts like these and think "what is going with me?!" I am officially diagnosed with autism, ADHD, depression, an eating disorder and OCD, which I probably agree with, but the Fibromyalgia and IBS ones are the ones I'm questioning.
Hi, I feel for you, it is the most miserable, uncomfortable at best and debilitating at worst condition. After five years suffering, being to,d it was in my head, being prescribed thrush cream, even Diazapam, I have finally been to,d I have Pudendal Nerve Entrapment and that my Autonomic system is in crisis. Sadly the drug they gave me to calm my system had a very toxic affect on me and I had to stop after eight days but at least I now know that the agitation, inability to keep still, rapid heart beat ( 146 resting pulse), profuse sweating is not in my head. I hope eventually to try nerve blockers. I hope you find something that works for you. Don’t be fobbed off. Good luck xx
I too was dx with LS two years ago. Very strange disease (who knew?!) and found Dermovate very helpful!! 👍
Had NO idea it could be related to Sjogrens
Fell into surgical menopause in July 2017, tho not given hormone replacement therapy for five years
Then not surprisingly developed vaginal/ vulvar atrophy (aka urogenital syndrome of menopause) although Doc at the time told me “EVERYTHING IS NORMAL” — to which I replied, “well it’s not normal for meee!”
Yes she literally shouted it and even wrote it out twice in letter to my doctor, which imo is kind of like shouting whilst also intimating I’m imagining stuff — as if I don’t know what my own hoo-ha looked liked BEFORE they removed my uterus & ovaries 🙄
Long story short after beginning HRT in jan 2022, I’m only just getting my sexual mojo back — thank the gods. For all these years I felt nothing and so began identifying as Asexual altho I had previously been and am once again cis-heterosexual — THAT’S the difference HRT can make.
Mind you, I’d accepted whatever and wherever life had brought me and yet cannot deny having my libido return feels pretty good. It MAY even make life as a post middle aged single person slightly easier. I don’t know yet, but fingers crossed
Besides the HRT patches, I use Estradiol vag pessaries (Vagifem) every other night, and also estriol cream for inside and outside ‘down below’ once or twice a week.
The estriol REALLY helped with minor urine stress incontinence — it's gone completely !
Thank you for sharing your journey of discovery post surgical menopause 🍑💮
Yes, we do know what is normal looking down below before 🪷 I myself, suffered with multiple intrauterine fibroids for many many years. I had various interventions along the way:-
Mirena coil
Laser of womb lining
Fibroid embolisation
Eventually, after holding my ground I had laproscopic subtotal hysterectomy- only womb removed via key hole June 2018. Ovaries, fallopian tubes, cervix remain.
Anyway, I agree that women are not fully informed of how the genitalia changes and the impact on YOU especally with Sjogren's Syndrome.
I am glad you have your sexual Mojo back 👏🏼👌🏽🫂🌋 I read recently, that even if libido has reduced for whatever reason....lots of foreplay will keep the waterlilly healthy - bloodflow in area.
Wow you’ve been through so much yet I’m pleased you were able to keep your ovaries. I miss mine so much and never wd have agreed had I known the truth about losing sex hormones. There are receptors for them in tissue throughout our bodies — and tear film is loaded with androgen receptors (Testosterone) as well as the cornea needing Oestrogen!! No ophthalmologist told me a thing. I do believe most are not educated in this area. Hopefully things are changing.
Re keeping the water Lilly healthy, it’s very true that delicate vulvar and vaginal tissue must be preserved or treated with extreme care especially if it’s “in use”.
After six years ‘in the desert’ I felt the urge and went for it (with a trusted ex “friend)
feeling like a viiiigiiin, I did actually bleed a bit — heck I never even bled the first time! Fortunately was only a bit of bright red and self limiting. But really brought home what damage (destruction actually) five years without HRT could do and how important it it for us all to keep our lady garden well tended in all ways Seriously though it’s a major health concern if we get so dry it hurts to walk — and that was an early Sjogrens symptom from waaay back!
With my patient, caring husband....he adores me even moreso now with all the changes....we enjoy pleasuring one another. Talk openingly with one another.
We do not have a crystal 🔮 but we have become aware of how we FEEL🪬
I know you will 🆓️🆙️ again. Spontaneity now and again is so fulfilling in the grand scheme of things.
Yeah, when I first saw red blood I kinda freaked out 🤯 a bit....then spoke with my hubby, and said to be more gentle.
I recently saw a new rheumatologist regarding my UCTD, sjorgrens, fybro, DDD etc.
she dismissed my comments/ questions about my interstitial cystitis, iBS and recently diagnosed internal rectal prolapse ( which requires regular laxatives and twice daily rectal douching) She said none of that was connected… I told her she should read the sjorgrens booklet in reception as it mentions bowel and bladder issues!! She hurried mr out the door!
I have vulval itching but cope with no soap and vagisil plus am on HRT patches.I mentioned to my kind male Gp re complete loss of libido- he’s arranged hormone tests. He can’t prescribe testosterone so it’s another queue for a gynae referral!I I saw my urologist recently and he’s put me on the ‘urgent’ list for a cystoscopy& bladder distension.. will be January unless I get a cancellation. My eye& moth symptoms are dreadful-. Just started cyclosporin drops( sent script in post from consultants who I haven’t seen for 3 years as my appointment ms keep getting bumped .I just wish someone could join the dots.
I have sever back issues. No lip biopsy done but always a positive ANA… .
I live in hope! D sad Orr’s for the long post. I feel for you alls x
Hey 👋🏼 Beakybird58Thank you for being honest with your symptoms with health professionals 🧡
I am so sorry that you have been dis-missed. May I say that if you are not aware, you can ask your kind male doctor to refer you for a private referral clinic - still under nhs umbrella. Please ask for referral to Gastroenterology.
Yes, you will join the DOTS eventually but you will need to keep listening to your body and try not to upset yourself.
I have been there and at one point, juggling so many appointments, tests in the whole year of 2020.
I had private referral under NH route for my back passage/gastro symptoms. BMI healthcare. I was diagnosed with Diverticular Disease and Oesophageal Motility Disorder. Please check out GUTS UK. I promise, that you are not ALONE.
1. Mouth 👄I have prescribed GALEN Salivax Peppermint flavour Salivary Stimulant mouth spray. No, it does not make your mouth all slimey. It actually helps an awful lot. I spray 1-2 squirta on top /under toungue, side cheeks as and when.
You will require regular intervention with dentistv🦷 and Opticians 👁
2. Eyes 👀 I use Hylo-Forte which only a tiny drop required. This hydrates your eye. Throughout the day, I use LIQUIVISC 2.5 eye gel which is fabulous- so thick. Along with Blaphasol daily eyelid cleansing AM/PM. Apply Xaiilin night ointment before bed.
3. Bowels 💩 Movicol - lemon & lime flavour is a far more gentler way of keeping motions flowing. Drink with meals each day. 1-2 sachets depending on need. You can make up more depending.
4. 🪷 Waterlilly, Lady Garden...hormones play a major factor. I and many many of us here are exploring different options and ways of dealing with it all. Hence why I posted this subject.
Like yourself, upon Dermatology apt May 2022, bloods revealed low Totesterone levels. I will also look into this. Due to injury, it has taken and still doing physio for nearly a year. Right Quadricep Tendon Rupture Repair.
I have spoken with Rheumatology admin this morning, whom has asked me to expedite apt with my GP. My fantastic Rheumatologist has now retired, over-due by 4 years. I am looking forward to a set of fresh eyes. New Rheumatologist specialises in Connective Tissue Dis-order.
Luckily, my Doctor is wonderful. To further discuss Dysautonomia in Sjogren's.
Relaxing your system and mind 🧘🏽♀️💗 is so very important when calming down stressures within your body. Your conditions and symptoms are very similar to mine. I fully Understand how frustrating this all can be, especially when you are dealing with it ALL at once.
Hi, I’m so sorry for late response to your encouraging post.
I’ve been given the mouth spray you mentioned- it’s really helped, so thank you.
I use hyloforte eye drops. But they don’t last long. Only got hylo night atm but will push for the other ointment you mentioned . My eyes& mouth symptoms seem to come in cycles- so my eyes can water like mad some dsys( poor tesr quality!) and same with mouth.
The rheum discharged me and said something about self re referral - never got the promised letter!
Oestrogen was low so am off the half patches and on oestrogen gel pump and progesterone pull at night.. Gp said a testosterone of 0.6 was irrelevant and it was mostly celebs that made up all the hype about it! Tbh I feel so unwell it’s hard to imagine sex with or without a libido.
Seeing Gp next week ( if I can get thru at 8.40 on tues morning!)
I’m the meantime I’m soldiering on and dreading Xmas meal for 10. My daughter will help. I will have to lie down mid- meal. Have no appetite at the best of times.. except at 3-4am after taking mirtazapine! Have to clean teeth again then.
Again, sorry for such a late reply. I’ve just been feeling so sh*t that I’ve done nothing for weeks. This weather doesn’t tempt one out does it?!
Hi Energy14 👋 Are you still able to get Xailin night ointment?
I haven't been able to get it on prescription for the last 6 months due to "supply issues". I've ended up having to switch to Hylo Night which is not a patch on my precious Xailin 🥺 but better than having eyes like road maps in the morning!
Hey 👋🏼 lupieibbieUnfortunately, I am on my last Xaillin night ointment as pharmacy can no longer get this in. I wasn't aware Hylo night.
However, as mentioned I do use LIQUIVISC eye gel which is fantastic as an alternative.
My eyes feel hydrayted and soothed. The lifeline is 4 weeks. Best to have x2 bottles. Use upto 4 times a day but it is not needed. Lovely and thick. Easy to apply 👀👏🏼🥰
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