Erm, 'dryness'

[teabellyjules]

:wave:

I have felt a little embarrased about bringing this up and there is NO WAY I am asking the rheumy about this one :o :lol:

Before I became 'ill' I did not have any problems being dry down below, you know where babies come out ;)

I don't know if the meds or what? Not on Prednisolone anymore (boy am I in agony!) so just wondering if this is a common problem or not, you know, being dry down below :rolleyes:

Love and hugs
Jules :coffee:
XXX

[Lily]

Hi Jules,

Assuming your hormones are ok and you are not near menopause age (I don't think you are from memory? ) then this is a hallmark symptom of Sjogrens syndrome. And something you must absolutely tell your doctor, it's important to tell them all your symptoms so they can make a correct diagnosis.

love
Lily

[teabellyjules]

:wave:

Thanks Lily :flowers:

I will have to brave the 'blushes' and tell the Rheumy. Will also have to tell him about the sores on breasts and groin too :(

I think I am reluctant to tell him things cos he is so dismissive BUT I know that I should.

He can't say its the steroids (his answer for everything :rolleyes: ) cos I began getting these 'sores' soon after my first holiday abroad which was around 4 years ago. I noticed the 'dryness' soon afteer becoming ill but was so wrapped up in all other symptoms and pain that I tried to ignore it.

He wants me to phone him when I get my next mouth ulcer to do a biopsy, I get them every week and have started getting cold sores one after the other as well. Then all the other symptoms :o . Thanks Lily, I will definatly tell him bout the dryness and sores when I go

[AnM]

Hey Jules,

I have had similar things and a little different things w/in the past year, but i don't have Sjogrens.

I had brought it up at my rheumy apptmt. n have discussed w/ other docs.

Just wanted u to know your not alone, and try not to be embarassed asking these things. :)

Oh, n just remember when bringing it up to your doc.; docs. usually have heard everything; (well not necessarily EVERY thing, but a lot of things in this nature :P ) & always remember it's always best to ask, and grin n bear it. :D

I hope u find out what's going on, and feel better.
Take care,
Alicia :coffee: :flowers:

[Sara2804]

Jules...I agree...tell your rheumy....I've got the same problem...I'm 25 and my hormones are fine so there's no reason why I should have that problem...After my ANA came back positive, I went to a rheumy and told her about that symptom...she did more testing and, lo and behold...I was SSA positive (the antibody often associated with Sjogren's Syndrome). So definitely tell your rheumy...things that we think aren't related to autoimmune problems often are and can be a big help to a rheumy trying to put the puzzle together...

And it's nothing your rheumy hasn't heard before ;)

Good luck and be well-

Sara

[here]

Thanks for bringing this subject up because I have a few questions to add too.

I have the same problem off and on but not constent. And, lately my eyes have felt like sand. I have been using wetting drops at night when they are the worse or a cold rag. I have not had a dry mouth too much though.

I am really reluctant to say anything to my docs because it seems like I am always having something and this comes and goes..

My question is if it comes and goes can it be Sjogren's Syndrome? or is it just like allergies or hormones?

thanks,
J

[Clare.T]

It is very possibly Sjogren's or at least the presence of the anti - Ro antibodies which reduces secretions everywhere. After eyes and mouth vaginal dryness is the most commonly reported.

There are two issues, lubrication during intercourse and regular lubrication because the moisture protects against damage and infection.

Sores around the genitals must be reported - they can be discoid lesions or can be a sign of other diseases.

If you have difficulties talking about these things with a male you are entitled to see a woman.

Practice saying what you need to say beforehand while doing relaxation exercises. Imagine you are asking to be passed the salt. That way you will shock yourself less.

The doctor you see now seems unsatisfactory in general and not responsive to your needs,so you are not able to get satisfactory treatment. Consider changing doctors - there are some good ones in the Manchester area if that's where you are maybe I have got mixed up :)

Maybe a gyny or even your practice nurse might have suggestions and I think too some members here have useful knowledge.

All the best

Clare

[redrose77]

I know this sounds strange, but I was wondering if dryness could be autoimmune related if it only affects sex, I ask because I have a problem with it most of the time now despite being more than ready. I get a dry mouth a lot and occassionally my eyes get dry (mostly if air blows on them even for a second). I hate asking doctors about this kind of stuff, but need to know if this is important enough so thanks teabellyjules for bringing this topic up as I would be too embarrassed. At least my GP is a woman so it won't be as bad if I have to bring it up to her.

[teabellyjules]

:wave:

Thanks everyone, you are all stars :flowers:

I have started practicing thinking pass me the salt while saying 'I have dryness' :lol: . Its great! Especially with brain fog :lol: . Have said pass the salt while thinking the dry thing :o

It'll be alright on the day ;)

Thanks everyone and sending wet vibes your way ;)

Love and hugs
Jules :coffee:
XXX

[Clare.T]

Vaginal dryness :lol: Of course you need to be careful when you are asking for the salt to be passed That might be even more embarassing than talking to doc about it
:lol: :lol: :lol: I am silly
Hugs from Clare

[teabellyjules]

:wave:

I've a good idea - I could say "Pass the CHOCOLATE" that way I will feel enthusiastic :woohoo:

I don't have salt so chocolate is the best thing to think of, hope I don't sound to happy and eager when I ask :lol:

Love and hugs
Jules :coffee:
XXX

[Sara2804]

Between Clare's "Pass the salt" comment and Jules' "Wet vibes," you guys have me laughing out loud!!! :lol:

Clare, you mentioned something I wanted to ask you about. Can just the presence of the anti-Ro antibodies cause dryness? I was under the impression that you only had Sjogren's if there was evidence of an autoimmune response against a particular moisture-producing gland...for example, I believe a positive lip biopsy is required for a Sjogren's diagnosis because it proves there is autoimmune activity against the salivary glands. But are you saying just the presence of the antibodies can cause dryness?

(Did that make any sense??? :wacko: )

Thanks for the info and the laughs :P

Sara

[specialk16]

Big Cyber Sister,
Don't be embarrassed. You should ALWAYS let your rhuemy know what is going on and how you are feel. :love: sending you all the wet vibes I have... :goodvibes:

Love Ya,

[teabellyjules]

:wave:

Thanks for replies :flowers:

I've just had a thought, what if rheumy says "Its the steroids" :huh:

Finished me Pred last week and boy am I in agony :( . See my G.P next week so will tell him that me body needs a fluffy cloud to lie on :cloud9:

Don't see Rheumy til next month so will keep practicing "Pass the chocolate" :hyper:

Love and hugs to you all :flowers:
Jules :coffee:
XXX

Ps Thanks for the vibes Cyber Sis, will let you know if anything happens :lol: ;)

[Lily]

Redrose, if the dryness is only evident during sex then it's probably not Sjogrens related.

Jules if he says it's the pred causing this then I'd get a whole container load of Replens vaginal lubricant and shove it down this throat :P :D I'm available personally should you require assistance with this task :lol:

:woohoo:

love
Lily

[teabellyjules]

:wave:

You are a star Lily :flowers:

That was brilliant, I can think of other places I could shove it :o but I am being a good girl :lol: I will end up giggling at the next appointment, having to THINK pass the chocolate and SAY "Hey I'm dry" Then depending on his reply will have this vision of Lily with the lubricant :lol: :thumbs:

Sending great laughter vibes to everyone. The pain doesn't feel as bad when I am laughing and boy have I laughed over the replies to this topic. You are all stars, and thank you for understanding :flowers:

Love and hugs
Jules :coffee:
XXX

[Lily]

:lol: <------------------------ one of the best medicines there is and free from side effects too I've found :D

love
Lily

[Raglet]

how old are you ?

Even if you are in your 30s, consider low estrogen as a possibility. My estrogen started dropping in my 30s, and caused terrible vaginal dryness (even before iv cytoxan cause a premature menopause).

I spent many uncomfortable years blaming sjogrens when it tured out to be low estrogen. Vaginal estrogen is safe with lupus, as it isn't absorbed systemically.

So,vaginal estrogen is a safe thing to try. If you are anywhere in your 30s it is a real possibility (which is why they are now saying don't wait until late 30s to try for a baby as they are now realising that during the 30s there are a LOT of hormonal changes happening way before menopause).

I was so pleased once I decided to try vaginal estrogen, it was pretty much an instant fix to a horrible problem

hth

raglet

[mara]

Sores around the genitals must be reported - they can be discoid lesions or can be a sign of other diseases.

I have had vaginal sores since I've been about 13 yrs old (before I became sexually active so I can rule that out) and only reported them to a doc about 5 yrs ago (much too embarassed to do it before). My doc just passed it off as a blocked gland, however did remove one to biopsy. Nothing came back. I also have severe vaginal dryness and have to use a lubricant and a regular basis or I become irrated just from daily cleansing. :( I've never given thought to any of this being related to Lupus or any other disease. I have never mentioned it to a rhummy either. I am currently on no meds.

Does anyone know what vaginal discoid lessions are like? or a web site with information?

Now that everyone knows my most intimate problems :notlook: I will thank you all for the laughs and chuckles. I have a rhummy appointment Monday morning and I can assure you that everyone of you will be on my mind. With my brain fog I am liable to ask him to "pass me the lubricant" or tell him "I have vaginal chocolate". :oops: :wacko:


Thanks everyone!! :P :P :P

I will let you know how I make out.

Tammy :love:

[Climbing rose]

Just to say I think dryness only being really evident during sex might still imply Sjogren's/sicca syndrome. Apart from anything else I am not sure how you always tell, if you see what I mean! I have dry eyes demonstrated with a Schirmer's test but only noticed that my mouth and vagina have dryness problems when I started to think about: for several years now I have had to have a drink beside me nearly all day, but only when the rheumy asked me about a dry mouth did it occur to me I must have one - if I don't drink my mouth is very dry indeed. And I hadn't thought about vaginal dryness outside noticing it was dry during sex in the last 6 months and that I now get thrush after *every* time my husband and I make love (mind you, that's not too often given how I feel most of the time and given 2 kids aged 3 and under!). The recurrent thrush is not something I have ever had a problem with until the last 6 months or so, and can be an indication of vaginal dryness: dryness causes more friction during sex which in turn can cause the vaginal wall to be more susceptible to candida infection. I now have a definite diagnosis of sicca syndrome, which as I understand is essentially Sjogren's with negative bloodwork.

Sandra

[teabellyjules]

:wave:

The sores are erm like...........a red/purple swelling then they burst and leave a round hole, the fluid is like a light coffee colour, yukky! Not only are they in the groin area, they are the breasts too. I am 36 and this has been going on for a long while.

What a pesky body :lol:

Love and hugs
Jules :coffee:
XXX

[specialk16]

Cyber Sister,
We are a lot more like than I thought :P . I got them on my breast and groin area up until I began prednisone. I still have a scar on my breast. I told my rhuemy about the groin area, but she wasn't too concerned since it wasn't in the vaginal area, so I didn't tell her about the spots on my breast. But I haven't had a problem with them lately. Maybe your doctor will be able to shed some light on the situation.

XOXOXOXO

Have a great weekend

[teabellyjules]

:wave:

Hi Cyber Sis :love:

I forgot to say that yes they leave scars and I have got quite a few :o .

I am due for my 3 yearly smear this month and I KNOW it is important so will have to tell Rheumy about this and see what he says. If he fobs me off then I will tell my G.P about it.

Love and hugs to you and your little cyber children :love:

Jules :coffee:
XXX

[mara]

teabellyjules Thank you so much! :flowers: as strange as this seems, I am quite pleased to read your description of the sores because it describes mine perfectly and even in reading all of the posts here, I'm thinking - no way can it be the same thing. I still thought mine would have to be different. It is such a releif to know a little more about what my body is going through and that while not normal, it's normal for us.

Thanks to everyone who has shared their most private symptoms with us all. :highfive:


Tammy :love:

[teabellyjules]

:wave:

I'm still not dx yet, although I have got a pretty good idea what is wrong but obviously would never let me Rheumy know that I think I know ;) :lol: . Imagine it.............me cleverer than the Rheumy :rolleyes: ;)

So..... I don't know if these sores are part of any autoimmune disease or not? My Rheumy would tell me ITS THE STEROIDS :lol: :rolleyes: But I know it isn't :thumbs:

Love and hugs
Jules :coffee:
XXX

[redrose77]

My goodness, the sores sound like the ones I get on my hips and stomach (only one on the breast area) except that mine have greyish stuff in them and a lot of very dark (nearly black) blood in them. Has anyone found a solution for them? I thought I was losing my mind as my old Dr didn't believe they occured- mainly because they weren't present during visits or I didn't feel like undressing. The sore left afterwards sounds very familiar and I have several scars from these things.

[teabellyjules]

:wave:

Got a bit distracted with sores then :lol:

Will tell Rheumy about the dryness and sores. When I had to go to the hospital with 'suspected TIA' I had to have the heart monitor and it was a female consultant, I think she wrote something in the file about my sores, I let her see cos wasn't too embarrassed but told her that there was no way way I could tell the male Reumy. Since then the Rheumy does ask if there are any more symptoms to tell him about. Hmmmmm, think he must know but waiting for me to say something. Sorry just typing out loud here :lol:

Love and hugs, pass the chocolate I'm dry :lol: :thumbs:
Jules :coffee:
XXX

[AnM]

Jules,

Hey hon. The sores u describe are like ones I have gotten n get. Mine are cysts.

Actually, when i was younger the doc. said steroids can cause these. But, i still get them. N I've spoken to docs. about it, n they say it's ok, just keep an eye on em.
To make sure they don't grow or hurt more, as they could be infected or something.

I would also inform your gyno. n have him/her (I would think yours is a her :P since u said u're more comfy w/ that.) take a look at em.

I also spoke to my gyno. about the ones in that area too. As I do get them in other places also. They do hurt in that area as it is a Very sensitive area. Although, mine are actually on my 'Punani' n in that region.

Actually, when i was younger i had one drained n removed from my breast, as it had gotten infected n Large. It was a simple procedure n didn't hurt. But, left a small scar that's a hole. :angry:

But, yes many of mine break n leave a small hole like u said, especially the one's under my arm. :(

Well, i think that's prob. intimate enough for ya'll. :rolleyes:
So, ask your gyno. also "to pass the Chocolate" :lol: :P U have given me a laugh w/ that. It feels good to laugh, even w/ things like this- it just makes it easier to deal. :)

Take care hon,
Alicia :coffee: :flowers:

[teabellyjules]

:wave:

Thanks for Reply Alicia :flowers:

I started with these sores about four years ago but I would occassionally get them. But since I became 'ill' I get as many as three or four at a time, sometimes as one calms down another comes up.

love and hugs
Jules :coffee:
XXX

[Jen79]

:) I thought I was the only female with the dryness problem. I am 25 and not in menopause. It can be difficuit at times if you know what I mean with your partner ;) . I have never told the doc about it because I am asuming that there is really nothing to be done about it. If it is really bothering you maybe you should ask your doc about it. Let me know the results.

[bluecarliepup]

:cry: Thank goodness some one brought this subject up. Ive experienced this "problem" and been too embarrised to say anything, but hay why not i am going to now! I just hope they dont prescribe KY everyone at boots will think ive got piles oops sorry to anyone who has.



Sam
xxxx

[Lady_Elira]

I know this is an old topic area now but could I ask a really dumb question? ;) What exactly does vaginal dryness feel like? I have Sjogrens and I thought what I've been getting is dryness but am now not so sure whether it might be thrush or an infection either!!! I am plucking up the courage to see my GP but just wanted to ask!

Thanks a lot!

Starlight xxx

[ladyjane]

I would imagine it is a lack of lubrication, especially during or ater sex, which may even leave you with a burning feeling . Even without sex I would think you would notice a difference when you go to the loo, hjust feeling drier so to speak. I have sjrogrens but dont suffer with this sympton YET :D

[Regina]

hi teabellyjules

what an interesting topic, the purple lumps, yes, I get them both on the vagina and inside and they hurt. I have raised this with my gp along with the dryness and the answer was KY jelly, yeah great :blink: For a long long time they only used to appear on the outside of the vagina :wacko: theres that naughty word again, on the tops of my legs but now this has progressed to be inside. i also suffer from all the dryness too but have a dx of sle only at present but I have changed Rhumy and am due to get test results which have been far more thorough in early september.

I will ask my rhumy directly at next visit and post to let you all know the outcome. If nothing else it makes me feel uncomfortable as when they get ready to burst they throb and cause pain. My rhumy referred to them as ulcers but I think they are more like cysts a nurse once said they are like sebaccious cysts.

sometimes I really hate this illness and I just wanna be normal again. :cry:

Regina xxx

[Lady_Elira]

Thanks for the reply! The thing is cos Im not sexually active and don't use tampons, I'm not sure whether the soreness and slight burning feeling is dryness. I do get a yellowish discharge ocassionally but not all the time and sometimes the soreness goes completely, which is what makes me think it can't be an infection if it goes of it's own accord, can it?!! I don't have any sores that I can tell anyway! :unsure:

Lady_Elira xxx

[teabellyjules]

:wave:

Right I am kicking meself right now :wacko: . I got letter from dermy the other day about me lumps under breasts and groin. I will do a new thread about the sores and what (for me) the diagnosis is.

The feeling dry down below :rolleyes: , I got some 'water based lubricant' think its the same as the well known brand you know the $% Jelly, I didn't mention it hahahaha. Anyway when :rolleyes: I am feeling 'in the mood' then yes it does help, well actually it is very good. I'm going to stop typing now otherwise I will start blushing and you know how shy I am :o ;)

Love, hugs and as always sending wet vibes to the ones who need it :lol:
Jules :coffee:
XXX