Problems
Posted , 11 users are following.
After being diagnosed with Lupus and Sjogrens over six ago ,I feel I know quite a bit about lupus but not a lot about Sjogrens. I have the dry eyes, dry mouth which I have medication for ,and they help, I would like to know what ladies are using for vaginal dryness, I use products from Boots or Superdrugs but I wonder if prescription products would be any better.
?I also wonder what sort of long term damage does Sjogrens do to our bodies.
0 likes, 21 replies
Tumtum1963 Jado
Posted
Hi Jado. Well I’m very passionate about raising awareness that Sjögren’s is much more than dry eyes, mouth abs vagina for many of us. In fact it’s everybit aa destructive as Lupus for those who have it badly - which seems to be many more than online information or many doctors have been willing to concede.
The way I see it is that moisture secretions are fundamental to our survival and therefore, when our bodies don’t have enough secretions - the oral and eye dryness are just the tip of the iceberg.
For me, and I was initially misdiagnosed and treated for RA for five years - it’s my nervous system that has been most badly affected. This small fibre neuropathy affects my entire body including my face now. Only today I’m puzzling over one foot/ leg that is constantly vibrating - the oddest thing really! For a few years my legs felt cold and wet all the time and my extremities burned relentlessly but now I’m much better off because these same areas and my face are mostly numb. The numbness is preferable to pain of course, like being covered in local anaesthetic. But standing, crossing roads, being in busy places is a bit of a nightmare now because I loose my balance when I turn my head - and of course my confidence about my mobility is affected too. And every now and then the anaesthetic thaws our and the awful nerve pain returns - and I never know whether to cheer that I still have sensation or dread how many tony nerves are dying off this time round!
Also my guts have been badly affected so I have chronic constipation and swallowing problems and my sense of taste and smell are shot. Part of this is just due to the lack of secretions but also the autonomic dysfunction that Sjögren’s is very much associated with.
Ultimately I think that Sjögren’s is the most misunderstood and underdiagnosed of all rheumatic diseases and I suspect it also makes it the most isolating. Many aren’t even regularly seen by rheumatologists and are under multiple specialists with no one joining up the dots. For instance I have hypertension with Raynaud’s and take Losartan but only just learned the other day, by a post on a BP forum, that I also have stage 2 kidney disease. Neither the vascular doctor or the rheumatologist or GP have ever mentioned this although I’m on the max dose of Mycophenolate - which is currently under review.
I don’t even think about vaginal dryness much to be honest although I know I have atrophy and thrush. I just use thrush cream and vagifem twice a week. I think many rheumatologists find Sjögren’s a very difficult disease to speak of because of the dryness - so they tend to ignore it in favour of joints and organs.
Tumtum1963
Posted
Megheart Tumtum1963
Posted
From first hand experience I agree that Sjögren's is misunderstood and it's affects treated somewhat passively, if not frivolously by the medical profession.
When I asked my Rheumatologist at my last visit if I should see an Ophthalmologist, especially now that I'm on Hydroxychloraquine, she shrugged it off and said "oh you do see an Optometrist for your glasses, don't you?" I felt that was an incredibly dismissive response. Needless to say when I see her next month I'll be very clear in what has happened to me eye-wise, since my last appointment with her. I think, (unless I chicken out), I will not mince any words.
Twice a year I get asked to present for Physicians exams, where I am one of a few patients with complex medical issues who have a gruelling day going through my medical 'story', firstly with the examiners from various specialties such as pulmonologists, endocrinologists, etc., then with the doctors being examined who are seeking to specialise in an area of medicine.
At these times when I come to talk about the Sjögren's part of my history I lay it on thick that I started my Sjögren's journey at the neurological end with quite devastating affects (both peripheral and autonomic) and only more gradually moved towards the dry eyes and dry mouth manifestations. I figure that these young doctors need to be aware that it is not always as simple as it is made out to be. S.S. can be a complex diagnostic dilemma and in that respect at least, possibly more complex than some of the other autoimmune conditions.
S.S's profile really needs to be lifted.
beverly39559 Tumtum1963
Posted
I too have the feeling of unsteadiness while walking if I turn my head to look at something. Very unsettling and the fear of tripping falling is awful. I always take a friend or my husbands arm while walking if we’re looking at something or site seeing.
Tumtum1963 beverly39559
Posted
Beverly this disequilibrium is a nightmare sometimes I know. I really feel that, with the exception of awful oral dryness and the ensuing swallowing/ choking issues and dental decay - nothing will ever be done to for us unless people realise how much bigger Sjögren’s is than just the relatively treatable aspects of dryness. X
shaq26875 Tumtum1963
Posted
estelle44124 Jado
Posted
I do sympathise I have now been married for 53 years. I was diagnosed about 9 years at with SS. And for all the years before, I thought I must be frigid as a wife. I now know better of course, in that the reason was not me, but SS.
I have always used a cream initially prescribed by my GP, though it can be bought over the counter. I'm sorry to say I can't now remember the name of it.
Don't let yourself suffer.
All the best
Estelle
Kablois Jado
Posted
Hello, I'm not sure how old you are, but oestrogen cream helps me (as it does non SS women after menopause). I also use Bepanthen cream (prescribed by my gynae) for irritation in the vulval area. I swear by that stuff, it really helps. My guess is that pilocarpine might help if you take it just before sex. Have never tried, but it does get the juices flowing elsewhere.
aitarg35939 Jado
Posted
aitarg35939
Posted
Oops, spoke too soon. Ate you asking about feeling dry vaginally & products for that, or are you asking what we use to make sex possible?
Kablois aitarg35939
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I think it's more a question of skin quality / fragileness but obviously dryness is related.
wendy58491 aitarg35939
Posted
Hi.
Sorry to jump on this but I am still seeking a diagnosis (with ALL my symptoms getting progressively worse). However, the vaginal dryness is an immediate issue and is threatening my relationship. If you do have any tips, please could you PM me as this is contributing to my overall condition in a negative way and I am becoming quite desperate. I am seeing another specialist on Monday regarding the whole of my symptoms but this part always seems to be disregarded and I feel it is crucial.
Many thanks for your time.....😶
aitarg35939 wendy58491
Posted
Will try to pm all my tips later, tho obviously estro creams used regularly can help if post-menopausal. If sex is "bare" many men don't appreciate exposure to inserted hormone creams/tabs, so I would never use less than 6 hours before sex.
More later.
aitarg35939 Kablois
Posted
I don't share tips to help make sex easier unless someone wants that. Is that what you want?
As far as I know, only hormones can thicken the lining. Those of us who can no longer use them in any form have to adapt or give up penetration sex.
aitarg35939 wendy58491
Posted
Wendy and everyone else who's asked:
I'm sorry to say that for the 3d time I've put great effort into typing a PM reply with lots of info and after I get it all done & hit send/reply, Patient boots me over to the sign-up page and in the process wipes out what I've written. my phone is my only computer & this is too hard on my hands & my frustration level.
Buy some Astroglide, a big variety box of condoms & a toy & try them out. Certain positions are now more difficult, as is the 45 minute bang. Well, that one's impossible because no lube will last that long. Be thankful for the memories you have & adapt to what you CAN DO now.
Playing in between times helps keep you from getting sore. An old study said that even masturbation helps increase thickness of vaginal lining-- up to a point which is waaaaay shy of 5 times daily, lol. Use the lube up to an inch past the vaginal if you tend to get sore on the back edge.
Your guys have to adapt, too. Condoms provide a consistent level of lube not to be found inside our bodies any more and the separate lube makes penetration possible, or it does for me. Take this seriously: a massive vaginal tear requiring full anesthesia was no fun at 31; I will do nothing to risk it in my 7th decade but I still have fun. If you use the Universal Access, no prejudice but my only knowledge is that it takes tons more added lube even in healthy 20 year olds.
Can't type more. Relax & find what works with a toy first.
lily65668 aitarg35939
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shaq26875 aitarg35939
Posted
wendy58491 aitarg35939
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Thank you very much for taking the time to reply. Your response is witty and yet informative and I personally have taken it on board😁
I have another question regarding the SS. The consultant I saw today has ordered more tests. However, he said his ‘gut feeling’ is Sjorgrens. He then added that this may be Sjorgrens Disease as opposed to Syndrome - has anyone come across this? He said there is a difference but so far, Google hasn’t been any help.
TIA
Wendy
aitarg35939 wendy58491
Posted
That's news to me. I wonder if this is a new way of delineating primary & secondary Sjogren's?
lily65668 wendy58491
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Hi Wendy, I've never heard of this before either. A syndrome is a disease, but it's one that consists of a collection of different signs and symptoms rather than just one. That certainly fits the bill for SS in my book! I had a whole ragbag of apparently unconnected symptoms for 13 years before I got a diagnosis. I think this is why it takes so many of us such a long time to get diagnosed.