Hi all, I have recently been diagnosed with SLE after countless visits to various doctors over the past 7 years which has been a nightmare. Although, the rheumatologist couldn't give a 100% diagnosis as I only had high anti double strand DNA antibodies and high ANAs. My inflammatory marker test came up normal, and because this was normal she said I don't meet the 'criteria' for lupus?? Bizarre. I have been given hydroxychloroquine which I've been taking for about 2 weeks. Sorry to be so blunt about one of my many symptoms, but does anyone suffer with vaginal dryness and lack of libido as one of their symptoms? I'm wondering if this will correct itself when the tablets have kicked in? I think there is some kind of hormonal imbalance which doesn't seem to be correcting itself but I'm hoping that these tablets might correct things. I'm only 36 and haven't been able to have a relationship for 7 years because of this 
It has been absolutely devastating for me as I feel that I'm going to be alone forever due to this illness. I hope someone can help me.
Vaginal dryness: Hi all, I have recently been... - LUPUS UK
Vaginal dryness
I haven't experienced this, but if this is a hormonal imbalance have you tried primrose oil? you can find this at holland and barrett,
also in terms or lack of libido, do you think it could be due to self-esteem or stress of the illness? i know it sounds random but have you tried self-pleasuring and getting to know your body again.
I do not know your personal circumstance nor am I doctor, but its definitely worth speaking to someone about, especially if your worried
xxx
Hi MsTMP,
I've never tried evening primrose oil...I guess it's worth a go so thanks for that. I know it's definitely not due to stress of the illness. I seem to have a lack of cervical fluid as well as lack of sexual lubrication and so I really think it is something to do with hormones. I have tried self pleasuring when I occasionally feel like it, and even though I'm able to orgasm I still don't have any lubrication! It's really weird. I've already spoken to many doctors and consultants and none of them have any answers..not even the endocrinologists (hormone specialists)!
Hi Sheepcoat ,
Please check with your doctor before taking evening primrose oil. Any complementary treatments can potentially have adverse effects on lupus or can interact with certain medications.
Echoing this - evening primrose oil has some contraindications (low blood pressure, bleeding; so if you have low blood pressure or on blood thinners, be advised). I will say however when I had untreated inflammation, I had ZERO libido for years (it was part of what ended my marriage) and quite a few other issues, and getting the disease under control first did help. So maybe try the medication first and see how you go.
I'd also echo what Barnclown has posted as there IS treatment and things which can be done.
Never mind the lack of libido - I "only" have polymyalgia rheumatica and it was pure and simple PAIN that turned me off! It was impossible to find a comfortable position to sleep never mind anything more exciting! Then the dryness to go with it. It didn't end the marriage, we're still together after 43 years, but it certainly hasn't improved the relationship. It never occurred to me then (we're talking 12 years ago now) to ask for help - and I do regret it. I find any gynae investigation excruciating - and when I had a transvaginal u/s done a couple of months ago to monitor an ovarian cyst the gynaecologist commented how narrow my vagina was. He was also the first to apologise for hurting me!!!
Hi PMRpro, thanks for the reply. This is a great forum, everyone is so helpful and it's such a relief to talk to people with the same illness. Wow you've really had a difficult time with the pain and the dryness aswell Are things better now? You've reminded me of when I had my cervical screening and the nurse said she had to go and get a smaller clamp thingy me jig (can't think of what the instrument is called)!
Speculum - I dread my smear appointment! Here in Italy they do a full internal as well - last time, no way, so they did an ultrasound instead and found an early ovarian cyst which will now be monitored. That is far preferable so I don't mind!
The pain is better, non-existent really - as long as I take a high enough dose of pred which is the only option for management.
Hi Silvergilt, I'm not on blood thinners and don't have low blood pressure but I will take your advice and see how the tablets go first. I'm feeling a lot more positive after reading your post so thanks so much for that. I can imagine it causing a lot of problems in your marriage as I don't even want to get into a relationship because I know I wouldn't want to be intimate due to the dryness and lack of libido. I just can't imagine dating someone and then telling him we've got to use lubrication right from the start...I just can't do it! Plus I wouldn't enjoy it either. I just want to be normal again
Hi Paul, thanks for the advice, I will check first then. Although it does say in the leaflet what they can react with, which includes indigestion remedies, which is an odd one.
Hello sheepcoat, and welcome
Am v much feeling for you. My intimate dryness came on in my early 30s...I think due as much to early onset secondary Sjogrens, as infant onset lupus
A few months ago there was a v popular discussion here on this subject. Here is the link:
healthunlocked.com/lupusuk/...
I hope something in there is useful
Libido is such a tricksy thing...in my experience, going without appropriate systemic treatment for immune dysfunction from my teens until my mid-late 50s certainly didn't help my libido at all. When I finally started daily hydroxychloroquine in 2011, I experienced a good degree of multisystem benefits generally within the first months (especially the joints in my limbs), and this increased with time.
As my consultants & I collaborated over the years that've followed, we've put together a daily oral combined therapy treatment plan that has helped me to less pain & more stamina, resilience (&, of course, these gives my libido a boost) than I've felt since my 20s...so, hang on in there
Wishing you every best wish with your diagnosis & treatment process. Am so glad you found this wonderful fotum
🍀🍀🍀🍀 coco
Hi Barnclown, my dryness also began when I was 30..I had just changed my contraceptive pill for about the third time and I was convinced that was what triggered it all. Thanks ever so much for the link. I am also so glad I've found this forum and have some sort of diagnosis at last.
Am v glad when something helps 😊
Your description of your rheumatologist's attitude to diagnosis makes me wonder....so am copying in a link to a great discussion here about official diagnostic criteria:
healthunlocked.com/lupusuk/...
You've had a lot of experience of the diagnostic process. Am figuring you know that many of us find the process continues almost forever...as we work with our consultants to understand our individual version of lupus and whatever other immune dysfunctions & connective tissue disorders accompany it...and also to figure out the best multisystem treatment plans with risk:benefit ratios that suit us most
Take care
🍀🍀🍀🍀
Yes I didn't think much of the rheumatologist really. When I first saw her, I told her I thought I had lupus and I could tell she didn't think I did. (I had paid privately for the ANA test which was positive.) She then started talking about chronic fatigue syndrome...My eyes glazed over at that point and I was thinking 'here we go again'. Then lo and behold I was called back in after a few weeks for an urgent follow up appointment. Yes I have a lot of experience of the diagnostic progress, it's been a long journey. I feel like Bilbo Baggins. I'm thinking I may have to find a consultant who specialises in lupus because I don't think mine seems to know much about it. She hasn't even offered any advice and when I mentioned my lungs and that I'm always taking deep breaths to get oxygen she didn't say anything about it
Have you considered that you may have primary Sjogrens rather than SLE?
This usually presents with high titre ANA and 50% have Anti Ro & La which leaves 50% who are seronegative. Vaginal dryness is a classic symptom. They say that it usually starts with menopause but I think what really happens is that this is when women get taken seriously and tested. Venus Williams has it and she's not old, apart from for a tennis player!
Your Bilbo Baggins description makes me smile! I certainly had vaginal dryness and many other symptoms including alopecia and facial rashes when I was your age and even younger. I was finally diagnosed with Hypothyroidism but the symptoms all continued throughout my 40s despite treatment.
Then my Sjogrens presented as classic RA for a time in my late 40s- which was when I was misdiagnosed with RA by a rheumatologist - who never once mentioned Sjogrens to me btw.
But then I didn't mention vaginal dryness and loss of libido to him! I chalked it down to being a generally dry person for years, but managed an active sex life and had three sons nevertheless.
So don't let this put you off. There's more to a good relationship than sex and if you find the right person your libido and dryness might both dramatically improve.
Get yourself a good rheumy first though who specialises in Sjogrens and Lupus - so you get on top of pain and illness as this won't be helping your libido. See your gp about the dryness - there are lubricants and pessaries that can help.
I do think the pill did bad things to me as well - I was on a banned one for 3 years in my early 20s - the elderly man GP kept giving it to me in bulk quantities! In my 40s I had two mirena coils - last one removed just as RA symptoms were kicking off. I'm not sure whether this has contributed to the dryness but the gynae nurse did ask last year because of my very eroded and scarred cervix and the rest. This was shortly before my Sjogrens diagnosis last year but I had the cervical erosions in my 30s.
Hope this helps a little - sorry to have waffled on but I'm Bilbo Baggins senior (54) - been on an epic journey too!
Hi Twitchytoes, (I love the name)! Well I did mention Sjogren's and the rheumy tested me for everything and took 6 test tubes of blood! When I went back she didn't say anything about Sjogren's and just said my results indicate lupus because of the dsDNA and my ANA was 1:400. My ESR was 3 (low), CRP less than 3, ENA was negative and rheumatoid factor negative.
Yes I know there's more to a good relationship than sex but I think they usually start with sex and desire etc, which I just haven't got I was with my ex-boyfriend when the dryness started in 2009 and it honestly seemed to happen over a period of about 2 weeks. One day I was normal and we enjoyed a great sex life, and then I just suddenly stopped producing any lubrication, or very little anyway, and since then it just hasn't improved. I did have a short relationship in 2011 with someone I really liked, but I still didn't have any desire to have sex. I would produce a very small amount of lubrication, but not enough for intercourse, and because I didn't have the desire for it i wouldn't have wanted to have sex and would've felt as though I was being raped or something! I have tried the vagifem pessaries but they don't really do much. My vagina has got moisture, it's simply that I don't produce any lubrication for sex. I think it's something to do with the gland inside the vagina maybe.
A eroded cervix sounds very serious and quite painful! When I have my smears they always say that mine is low, but never mention anything else. I think the pill should be banned. I'm sure that one I was taking years ago used to give me severe chest pain, like angina, and I was only about 16! I was only on it due to painful periods.
Thanks for all of the advice and info BB Senior, it's very much appreciated. 
No worries but you can have Lupus AND seronegative Sjogrens and Sjogrens cab be active when Lupus isn't.
I'm not really good at all the more specific patterns for various CTDs. But I will say that my ANA pattern points to Scleroderma and Polymyositis rather than Sjogrens - although the specific one, Scl73 I think, was negative, as were all my ENA panel.
I usually have high ESR and raised CRP - but then ESR goes up according to age often . Mine is usually between 30 and 80 so this means I was believed to have RA when my joints were very painful . But it continued to fluctuate even when the synovitis was gone.
Now they say this is because I have primary Sjogrens rather than RA and the high inflammation is actually lack of moisture in my blood. I don't think this is entirely right - I can tell when my autoimmunity is active and I'm sure you can too. Can't win with low markers or high can we?!
For what it's with I know people who have severe erosive RA but who still have low inflammation markers. But their doctors can see the erosive damage on x-ray or MRI, so come to realise that inflammation isn't showing up in their blood but it's still there actively eroding their joints.
I still think vaginal dryness and loss of libido is most closely associated with a combination of active disease and Sjogrens. It took a lip biopsy to confirm mine and I'd obviously had it for years by the highly positive result. And yet it took ages to diagnose because of lack of specific antibodies and plenty of saliva.
So I just wouldn't rule out that you have Lupus with Sjogrens and that the Sjogrens is the more active disease for you currently and it is affecting your sex drive just because this is what Sjogrens does, for me anyway.
Behcets can also cause vaginal dryness I believe and presents very like Sjogrens often.
Coco I'm so glad you put the link on here to your post on gyn dryness, I'd forgotten about it even though I had commented on it at the time and my problem of dryness has got worse so reading it again has been so helpful 👍🏼, oestrogen cream was suggested by my gp if swabs I had taken yesterday come back negative, I'm hoping that by adding oestrogen back into my body won't make my hot flushes or my migraines worse or affect Lupus in a negative way.☹️
Diane🌺🦋😘😘
👌😊
all of us put so much precious thought into these discussions....seems to me these become 🌟s in their own right...so I do tend to reply with links to discussions sometimes (it's also a way of saving spoons 😉)
I ❤ the sound of your practice nurse!
🍀😘🍀😘
👍🏼Good idea Coco as there's so much info in a discussion AND our spoons are very precious😍
😘🌺💕
I love the details you gave on this subject. I am not in a relationship and i have not had sex since i conceived my son 5yrs ago. Reading your post has given me so much information.
Thanks take care and God bless
Regards
Ije xxx😀
Hi sheepcoat, I thought that having a high positive Anti ds DNA was fairly specific to SLE, I was diagnosed last month after a 6 year battle with health and diagnosed UCTD 14 years ago slowly getting worse over the last couple of years with lots more symptoms that are suggestive of sjorgrens so I may have secondary sjorgrens alongside SLE, I have a strong positive ANA with Anti Ro antibodies, all my other tests were negative last March but I've had them all done again last month so waiting for results, it's strange how rheumatologists vary so much with their diagnosis!
I can relate to your post as along with my dry eyes, mouth, nose,I also have vaginal dryness and was also thinking of posting on here about it , I saw my dr and practice nurse yesterday for swabs and pelvic exam, I've put it off for ages but knew I had to pluck up the courage to go, the nurse was lovely and put me at ease straight away and basically said I was so dry it was difficult to get anything to swab! So they're thinking this is a combination of a sjorgrens symptom and post menopausal atrophy/dryness, it's no fun is it? She gave me lots of advice on lubricants and vaginal moisturisers, She said I don't need to suffer in silence, there are things to use to be more comfortable, so I went straight to boots and checked them out and have started boots own vaginal moisturiser! My gp suggested that I start vaginal oestrogen if my swabs come back clear.
Coco's post on Vaginal dryness is invaluable, great info which I have to admit I had forgotten about although at the time I had commented on it and I've just reread it.
I really hope you get some relief with the Hydroxy and perhaps once you're feeling a bit better your libido will improve, after all who wants to be intimate when you feel so poorly?! I completely empathise with you.
I started Plaquenil 3 weeks ago it's still early days as it can take a while to feel full benefits but I'm living in hope.
I'm really pleased you asked this question 👍🏼
Sending you hugs
Diane🌺Xx
Hi diana,i have a daughter 10years old with SLE and sjogren syndrome with anti ro ana anti la strong positif.Ana test 1÷640 speckle,anti ds dna borderline but my daughter don't hv any flare except nose bleeding ,and now already stop.Rheumatologist give her plaquenil 200mg a day.
Im not believe my daughter have SLE.what your advise?thankyou
Hi vijij,
I'm sorry your daughter has SLE and sjorgrens, it must be hard for you both as she is so young.
From what I understand these blood tests along with symptoms would point toward SLE and sjorgrens which is perhaps why her rheumatologist has given this diagnosis.
Here's a link to some info where you can find the blood tests they use to help with diagnosing Lupus etc.
lupusuk.org.uk/wp-content/u...
There's lots of useful information on lupus uk.
That's good that she's not flaring so maybe the Plaquenil is keeping it under control.
It might also be a good idea to ask her rheumatologist when you see him/her how they reached a diagnosis of SLE/Sjorgrens.....never be afraid to ask the Drs any queries you may have in order to understand what is happening which will make it easier for you to help your daughter understand too.
I hope this helps a little.
Diane🌺xx
Hi vijij. I had nany symptoms of SLE and Sjogrens at your daughters age. No one ever suggested autoimmunity to my parents it was just "allergies" and anxiety. I had butterfly rashes and my hair all fell out and I had whooping cough that lasted for six months.
If I'd been tested then I think it would have really helped me to have a name to pin everything onto - in my case Sjogrens and Hypothyroidism. So please do trust your doctor - it will help your daughter to understand about her autoimmunity as she grows up. I wish my late mum had done this for me.
Another aha moment from reading your post---I would dry cough fkr weeks at a time as a child...
This wasn't dry though - it was full scale whooping cough with the unique and disgusting projectile vomits that go with it!!
Hi twitchytoes,how old you had this lupus?and what treatment you take?
It wasn't ever called Lupus - they told me it was anxiety - but I later discovered that it was because my mum didn't feed me as a newborn because her breast milk didn't come in and she was told to leave me for four hour gaps by her own mum (who had abandoned her to a wet nurse during the war!) so I was a day or less off death - then bulk fed on a formula thickened with semolina from 3 weeks. They never took me to doctors and told me I was just of a nervous disposition! So I had all these immune system problems but no specialist was ever consulted and each health problem was treated on its own - lots of steroid creams and as I got older, oral steroids. This is why, from my perspective, as a daughter and a parent - I think it's good to be properly diagnosed by someone who really understands autoimmunity from an early age. X
Fundamental misunderstanding of how breast feeding works - which still exists these days! Your poor insides with all that wheat at that age...
Hmm I know but in those days there weren't visiting health visitors etc - and my dad was in hospital with severe mumps so my mum moved in with her mum - who had read Dr Spock and told her there was nothing worse than a fat baby!? 🙄🙁
That man has a lot to answer for!
Thankyou Diana
I'm so sorry about your daughter...I had to stop at your post about your daughter only having nose bleeds because I had such awful nose bleeds when I was a young girl and never an explanation. What are the nosebleeds caused from?
The nose bleeding came out if her platelet under 60k,and sometime if her platelet normal also can nose bleeding.ENT doctor told me maybe my daughter have a weak nose vessel.
Hi Diane, yes from what I've read it seems as though a lupus diagnosis is usually anti DNA and positive ANA. She said because my crithidia is negative, I don't fully meet the 'criteria', although it seems obvious to me it's got to be lupus.
I did a bit of reading up about Sjogren's and was convinced I had it for a while but my mouth is probably the opposite to dry! My eyes get dry but it's more to do with staring at a computer all day I think. No, the vaginal isn't much fun at all. It's been devastating for me as I haven't been able to get into a relationship or have children for this reason. I'm nearly 37 so won't have much longer left if I did want kids. How is the oestrogen cream? I thought of using that but an endocrinologist I saw said that I was producing plenty of oestrogen otherwise she would've put me on HRT to try and help. I did buy some vagifem pellets which don't really seem to do much.
Thanks so much for the well wishes, it really is so nice to talk to people who understand the problem. I am really hoping the hydroxy will work.
Yes it's really good to talk, I am sorry you haven't got to where you'd like to be in life, it is so hard when struggling with health issues, everything changes, I hit 50 and everything seemed to go down hill and life wasn't how my husband and I had thought it would be! I can safely say that I haven't enjoyed my 50's at all so far, I'm 56 now and finally feel more hopeful for the first time having recently found a rheumatologist who is actually taking me seriously so hoping with the Plaquenil and the right support I may start to feel a bit better at some stage.
I haven't started oestrogen cream yet I have to wait until I have the swab results back next week and if they're clear then I can try it.
Did you say you have positive anti ds DNA? I'm a bit confused, isn't crithidia the type of test for ds DNA which you say was negative?! It doesn't take much for me to get addled and confused 😫 these days!
Don't give up hope, lots of people do well on Hydroxy so maybe we both will too 💕👍🏼
Yes it is horrible struggling with health issues and all the knock- on effects it can have, but I guess we just have to stay positive and hope that we will finally get the medication we need to get well. This disease has affected my life in so many ways, and you too. My symptoms started at about 28 which were chronic fatigue and urinary problems. I would feel absolutely exhausted at work and have to put my head on the desk, it was terrible. I'm not as bad as that now, but do still feel horrible most days and have developed more symptoms since. I've read a bit about Plaquenil, I think it's the same as hydroxychloroquine isn't it, from what I remember? If my rheumy isn't very helpful I'm going to ask to be referred to the hospital in Hertfordshire I think, as they are a research centre for lupus. I've had enough of doctors not being very helpful and I'm willing to travel to get the help I need. Please let me know how the oestrogen cream goes.
Yes I've got high dsDNA which was 220 (0-75) and next to it it says 'crithidia negative', so I think there must be two parts to the test. I think the crithidia is the inflammatory marker or something. I think the rheumy was a bit confused to be honest.
I really hope the hydroxy works!
Yep like you I feel horrible nearly every day, sometimes for no reason I have better days but not many, praying the Plaquenil helps even just a little would be nice. Yes Plaquenil is the same but I'm unable to tolerate the generic versions and Plaquenil is no longer available here but I'm now lucky enough to be able to source it from outside the UK , I've had a bad time on Hydroxy since last May but now been on Plaquenil for three weeks I'm only on 200 mg at the moment but so far I seem to be ok on it fingers crossed 🤞.
After being misdiagnosed last year by a rheumatologist who was completely disinterested in my symptoms and came to the conclusion I had cutaneous Lupus which he couldn't have got more wrong, he didn't even examine me! I found this forum and with the encouragement and advice on here I asked for a second opinion and it was well worth it , my experience was completely different and he was thorough and interested in everything I was telling him, when he said it was SLE I welled up! It's been a tough six years especially the last two as I had to let my job go which I loved although this has been going on really for 15 years if not longer slowly getting worse! So I would defiantly say yes go for a second opinion if you're not happy, I went well prepared too, having written everything down, typed out with bullet points easy to read and handed it to the dr, he read it and asked me questions as he went through it. I wrote about it in my last post.
I'll let you know what happens with the oestrogen cream.👍🏼
Like you say we have to try and stay positive although at times that's harder said than done.
🌺xx
Yes I'm the same, good days and bad days and on the good days I start to get excited thinking am I getting better? But then the next day will be a bad day Did you notice any improvements with the hydroxy? Although I'm assuming that they were minimal compared to the side effects. I've noticed that my bowels are less loose and the hair loss is getting better and I've only been taking them for 3 weeks. In the first few hours after taking the tablet, I notice I start to feel very nervous and think I'm a bit breathless, but then I'm OK again the following day. I felt very nauseous for the first three days of taking them and just not right at all, but seem OK now.
After you talking about your mis-diagnosis I think it must be very important to see a consultant who specialises in lupus. It is shocking that a consultant rheumatologist can know so little about the disease! No wonder it can take years to get diagnosed, because the GPs haven't got a clue and then even the so-called specialists don't seem to know either! So 15 long years waiting for a diagnosis?? Unbelievable! Yes I will see what happens at my next appointment and whether these tablets work. If I'm not getting anywhere, I'll ask for a second opinion from a lupus specialist. I also usually write a list out of symptoms and points I want to raise, I'm very well prepared, if not a little sick of repeating myself to numerous doctors!
Exactly, I hate seeing new health professionals, it gets so tedious going over and over it! The consultant I saw has a special interest in connective tissue disease, Paul on here pointed me in the right direction.
When first diagnosed back in 2002 I didn't fit into any particular CTD which is why they said it was undifferentiated and put me on Plaquenil 400mg I was on it for eight years no problem then when I got really poorly 6 years ago I was told it was Fibro and put on loads of other stuff so stopped the Plaquenil until until last May, yes the side effects outweighed the benefits except when I took Plaquenil and then discovered I couldn't get it here anymore, I was pinning all my hopes on it so really disappointed when I couldn't get it as I was having some better days on it. I'm now wondering if the Fibro was a misdiagnosis too, I'll have to ask the rheumatologist, I know you can have it as well and many symptoms can be the same.
I've had more better moments since I started it again but still having bad days too and the fatigue is still overwhelming some days a little less and still have this horrible spaced out feeling, my hips have been a little better. I had the nausea too at the beginning which has eased off now.
Like you I get excited on my better days, it's such a nice feeling to be a bit normal for a while but no it never lasts and it seems when some things ease others appear or get worse, there's no let up!☹️
Hope things keep improving for you.
🌺💕xxx
Yes, I feel as though I have to go over things so frequently that I get a bit lazy in telling them all of my symptoms! That's great you saw a consultant who was actually interested...It's nice when you get a good one.
How come Plaquenil was banned here then? I'm guessing it's something to do with the eyes as the hydroxy says it can cause retinal damage. I'm glad the tablets are making you feel a bit better..at least that's something. Isn't it just a nightmare. I know that the lupus must be affecting my liver because I had three pints of lager on Saturday and I feel extremely tired and sluggish today and can't seem to get enough oxygen. If I drink more than three pints on a Saturday, I won't feel 'normal' again until Thursday!
I can't drink alcohol at all, I'm wiped out if I just sniff it!
Plaquenil is the brand of Hydroxy,it wasn't banned it was just discontinued I don't know why , probably to do with licensing or costs, generic is cheaper! But they still manufacture it in NZ, Turkey and Pakistan.
Today is a bad day feeling absolutely rubbish, have to plough on though 😫, maybe tomorrow will be better...or maybe not🙄!
Xxx
I feel OK when I'm drinking alcohol and can tolerate a fair amount, but it makes me feel very lethargic and ill for days after!
Today is a bad day forme too...very tired and can't get any oxygen Hopefully tomorrow will be a better day for us both! X
👍🏼🙂xx
I have primary Sjogrens but vaginal dryness was an issue long before my dry eyes bothered me. In fact I had severe rhinitis at your age. I have never really had the dry mouth since I adopted (subconsciously) a habit of nose breathing so I still produce plenty of saliva. The vaginal dryness was an issue for me that I can only make sense of now. You could have both lupus and Sjogrens of course - they are a common pairing. I'm +ANA but negative ENA . I was diagnosed last year by very positive lip biopsy and this is classed as seronegative Sjogrens.
My nose dryness and I seem to have a lot of pressure in it of late but I've had trouble with it ever since I had a septoplasty 3 years ago, a horrible operation I wish I'd never had, I use beconase and sterimar and I tend to breath through my nose which like you say helps the mouth which isn't so much of a problem at the moment although it is noticeably dryer in the last 6 months or so especially when I'm talking! , it's more my eyes nose and foo 😱. I am positive Anti Ro as well as strong positive ANA but had all the blood tests done again last month so waiting for results, will be interesting to see if anything has changed. 🌺x
That's meant to say ' My nose dryness has got worse'' 😬
Hi Ive discussed my vaginal dryness problems here before and had great support. I don't know your age but I'm 52, have lupus and sjorgens. I believe a combination of these and pre menopause has caused dryness, soreness etc. I followed Barnclowns advice in the past. I now Use vagiferm pessaries twice a week, wash with E45 was as often as possible and use Daktacort ointment. It has not gone but relieved. Using E45 as a lubricant also helps as I don't react to it.
Hi Johare, I am only 36 and had the dryness since I was 29 I've had tests for all of my hormones and the endocrinologist said I'm producing plenty of oestrogen and said my other hormones were OK too..i just don't get it. I tried the vagifem pessaries but they didn't seem to make much difference. I don't think my vagina is dry all of the time, it is more that I can't produce any lubrication during intercourse, or produce very little. I don't know if this is a problem with the gland or whether it's simply a hormonal imbalance or something.
Has your Gp looked at side affects of medication you are taking as well as the possibility of sjorgens. I have felt that also that once it is uncomfortable it is then difficult to relax no matter how thoughtful your partner maybe. Including lubrication into sex is my only key. (sorry to be explicit).
Hi Johare, it's not the medication as I've only been taking it for 3 weeks, and I've had the dryness for 7 years. I have seen a rheumatologist and she tested me for everything, and just mentioned lupus in my follow up, so I'm presuming that I don't have Sjogren's as far as she's concerned. I will ask about it again at my next appointment though.
Im sure someone has already mentioned this but have you been tested for Sjogrens Syndrome, as I have SLE (Lupus) and have Sjogrens as one of my MCTD . It can cause extreme dryness in eye's, mouth , vaginal area's even attack fluids within joints. Have a read up on it and maybe if you havent been tested maybe worth mentioning.
I get given lubricant eye drops and ones for vaginal area to help PH balance as well as dryness.
Good luck , Hope you get some relief.
Hi and thanks for the reply. When I saw the rheumatologist I did mention that I thought I either had lupus or Sjogren's and she said she was going to test me for everything and I gave 6 test tubes of blood. When I went back for my follow-up she just said that I had suspected lupus and didn't mention Sjogren's but I will ask her next time to make sure I was tested for it. I don't have extremely dry eyes, and my mouth is probably the opposite to dry- I think I produce too much saliva sometimes! I will definitely mention it though as there is another lady on here who had vaginal dryness before anything else. Can I ask what you use for the vaginal dryness?
Hi sheepgoat,
Usually the symptoms is very dry itchy sandy feeling in eyes , very dry mouth constantly needing a drink , my tongue would and still does get dry and sore. Same with dryness with vagina obviously , some people have less symtoms sometimes more it just depends. usually one test is getting you to spit into a cup over a period of time and then they can see if you develop the normal average amount of saliva you should in the time given. Lack of normal amount of saliva is one sign. Also there can be joint pain
( people dont always realise this but it can with some people as it causes less fluid within the joints)
Look up tests for Sjogrens Syndrome before you go and be well informed as alot of auto -immune diseases get missed due to their being so many different diseases.
I was transfered from my first Rheumatologist after a year to another who had a speacial interest in Lupus, Sjogrens Syndrome and other more complicated MCTD etc as my first Rheumatologist mainly dealt with Mainly Rheumatoid Arthritis and new that I seemed to have different symtoms etc.
I didnt even realise at the time that they dont all have lots of knowledge about different MCTD Im 41 now and they now think I may of had lupus etc since I was 27yrs after my left kidney died through lack of blood supply and right kidney needed saving with bypass surgery and they fitted a graft in my mid aorta. At that age I hadnt even heard of mixed connective tissue diseases.
Wasnt till years later at 35 when other symtoms developed that SLE (Lupus) , Sjogrens and Arthritis ( caused by lupus ) were all diagonosed.
Hope ive been some help
Hi Mellisa, I do get dry eyes sometimes but not to the extent you describe. If I blink hard-ish that moisturises my eyes again. I mainly get it at work when staring at the computer all day but I need glasses so that doesn't help! My mouth definitely isn't dry and I know I would easily pass that saliva test! I will definitely ask the doctor if she tested the Sjogren's antibodies.
It is a real shame your lupus wasn't diagnosed until you'd already had kidney failure That is terrible. You definitely have a good point about being referred to a lupus specialist. I don't think the rheumatologist who I saw really knew much about it and didn't give me any advice, which is shocking really.
You've been a great help, it's so nice to hear other people's stories.
Anytime sheepgoat, keep strong x
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