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[bombsh3ll]

I find it helpful whenever anyone is considering whether HRT is safe to take with certain conditions, to ask the question if a premenopausal woman had the same condition, would she be sent to gynaecology to get her ovaries removed, or given injections to induce chemical menopause?

[Jacksbquik]

Hi all,

I just wondered if anyone has experienced this horrendous condition- Dry Mouth with loss of saliva and persistently peeling lips on a daily basis, leaving lips raw, sore, dry, painful making it difficult to eat, drink or talk?Also the dry mouth which can feel like cotton wool- since Feb and just prescribed Saliveze dry mouth spray and Salvix tablets - that don’t really help.

I have had this since Jan, ‘25, been multiple times to gps, been given Hydrocorsitine  cream, Fuscidin Acid Cream and Fuscidin H cream. These treatments calm it down but peeling just returns as soon as you stop treatment. One gp did a swab test to find bacteria infection and then gave me the Fuscidin Acid cream.

In Feb- got a blood test with suspect Sjogren Syndrome, but blood came back fine. Other horror symptoms this year- e.g. swallowing problems, dry throat, dry nasal passages, very dry ear canal skin,  just to name a few basically all linked to dryness in body.

Last year - April, ‘25 when terrible urinary/ vaginal dryness painful symptoms started- this is when I started Vaginal Oestrogen - 4-5 times a week as x2 a week not enough to stop symptoms.

Desperately looking for a solution to try and manage lip peeling in particular,  so I can eat and talk more comfortably. Worried that soon I will not be able to eat at all! Have asked for and pleaded for specialist referrals since August. My dentist is shocked by my raw lips and immediately made a referral- but says I don’t fulfill criteria for urgent referral, took photos and says it will take a while. My dentist did a saliva test- where he couldn’t get any saliva.

My gp has tried to refer me twice to rheumatologists as I have asked for referral - as I have all symptoms of Sjogrens Disease but they just get back to my gp asking for more blood tests- which keep coming back as fine.

Been to hospital when in terrible lip pain- but out of hours gp just says go back to my gp, try to get referred to immunologist and can’t give me any advice on how to help. Another gp  in hospital did say that I need to tell my gp to ignore blood tests results as my body is painting a different picture. But my gp keeps referring - but just gets told by rheumatologists- to do more blood tests - and basically can’t get any specialist care/ advice and I am going round and round in circles.

On Sjogrens UK website- it says there is not one test for autoimmune disease - Sjogrens Disease but multiple observations / tests of dryness from gp, dentist and optician, and some people can still have the disease even though does not show antibodies in blood which can appear normal. The gold standard for diagnosing Sjogrens is getting a lip biopsy - but if I can’t get a referral because of my blood results, can’t get a lip biopsy to check once and for all if I have it - and then get specialist treatment plan. Obviously, I am hoping it is not Sjogrens Disease as it can also attack organs.

I have researched endlessly and as post menopausal- have read that dry mouth etc  can be linked to drop in oestrogen. My research continually points to Menopause, Thyroid problems, Autoimmune disease in particular Sjogrens Disease , Diabetes - or a combination of Menopause and Sjogren Syndrome.

Have had an underactive thyroid for over 10 years now and take Levothyroxine. Have had endless blood tests- as a result of all these symptoms. Another theory I thought could be a side effect of long term use of Levothyroxine for underactive thyroid. Just got my thyroid checked last week for annual review and awaiting results, but I know that my thyroid was fine when in hospital last April after loads of blood tests.

Sorry , about the epic post- but just wondered if anyone else has experienced this chronic lip peeling with painful raw lips and dry mouth, especially as is progressively getting worse, more painful and now I can’t work, avoid talking, have difficulty eating and can’t go out to meet family/ friends due to severity of this symptom. If so do you have any tips to try to manage?

NB Been using Vaseline as advised by gp but no longer helps and over last 2 days gp suggested Cicloplast lip balm- which I have used for 2 days - but think it is making things worse- so looking for any advice. Currently, I don’t take HRT for body, just local vaginal oestrogen- Estriol pessaries. Anyone out there who has experienced these symptoms, any tips how to manage would be greatly appreciated. Thanks.

I have had very dry mouth and more thirst than usual (been tested for diabetes and nope) not the other symptoms you have though. But, just here to say that that's what makes this journey so difficult mentally for me. There are so many symptoms that COULD be attributed to menopause (and probably are) but could be something else and because doctors are so uneducated in terms of menopause it takes forever to rule other things out and in the meantime, personally speaking, my mind has already spiraled. I hope you get some relief.

[Old Frumpy]

Firstly this link https://www.drlouisenewson.co.uk/knowledge/burning-mouth-syndrome-and-menopause

I am sorry to have only picked this up but yes I have and do experience this and it was diagnosed back in 2016 after referral from dentist to maxillofacial at hospital. Told I had Burning Mouth Syndrome known as BMS.  Little is known of this, it flares in women and my mouth was on fire and lips so sore. Initially I was given prednisolone 5mg soluble tablets which had to be dissolved in small amounts of water.  It settled down and in return I was told I had Dry Mouth.

Here goes with what I was told: the mucous membrane is an inner lining found in the mouth nose and down below also the inner eye. Me well I have the best of three dry mouth, dry eyes and VA too boot. (all diagnosed) and under control.  Seems can be more in women of certain age!!!!

I do think the dentist referral is correct.  Get prescription from Dr called Oralieve gel which helps with moisture in the mouth.  Can be bought on Amazon as can their toothpaste.  Also Salivix pastilles are on prescription or Amazon for mouth while never used there is something called Xylimelts that stay onside mouth if dryness bothers you at night .For the lips sorry but this was a nightmare for me.

While covid with mask it was horrendous.  Tried allsort and a dental nurse suggested olive oil mixed with tiny amount makuka honey . Just a dab here and there on lips and it really helped. Plus had in house so no brainer to try If you wanted to go for a lip treatment have used La Roche Posay Cilcplast??

Do hope this helps and once on right track it will improve.

[CLKD]