Discomfort

[Simonebirds]

Hello all does anyone get like neuropathy or burning sensation from within like female parts ? It comes on from no where and even some pelvic discomfort or feeling like the period wants to come on but it’s not time . I notice not much info on female issues and this only dry eye and mouth . I also have tinkling in feet etc . Thanks all

[weathervane]

Im not sure if this is the same but i had pain and pressure down there, i had a scan which showed i had inflammation in all the joints of the pelvis including the pubic symphysis, it was this joint that was causing the pain and pressure. It has settled but i have had occasional flare ups . Another cause could be a UTI ?

I hope you find the cause of the problems as it can be very uncomfortable.

[Simonebirds in reply to weathervane]

what scam was able to detect inflammation ?

[weathervane in reply to Simonebirds]

It was an MRI scan

[sarahalice]

Hi. This is horrible and scary. I have simular pain. Mine is a burning pain, my is lower right side. I've had it for over a year and I have it most days. It is being investigated, I have had 2 ultrasounds and internal scans, both times clear. I now thinking it could be bowel related. I've not had much luck getting ideas of what it could be from the docs, just the we lupies can have a wide range of symptoms everywhere.

my best advice is to track your symptoms and track your cycle to see if there's any links.

Best of luck.

[Simonebirds in reply to sarahalice]

your burning is it internal ? Or just down your leg ?

[sarahalice in reply to Simonebirds]

its in my lower tummy /pelvis areas, right side.

[Simonebirds in reply to sarahalice]

so sorry yes this is tough

[Simonebirds in reply to sarahalice]

hello checking in . Did you ever find the cause of your pain / burning .?

[sarahalice in reply to Simonebirds]

Hi Simone.

It's still being investigated. Can you believe it, it started 2yrs ago this August.

I've still have the pain in the same place most of the time, though I've not had the extreme pain that scared the hell out of me when it all started. I've had 2 ultrasound + the internal and stool samples tested. Now they want to put me on Provera (mini pill), but I'm reluctant to pop more pills. The only positive thing I can say, the pain hasn't got progressively worse. My latest smear needed more investigation, so they took a couple of biopsies, so I'm waiting back on that.

How are you, did you get a diagnosis?

X

[Simonebirds in reply to sarahalice]

well if you mean smear as in pap I got to get biopsy , it’s been a real ride . It’s hard knowing what’s Sjögren and or something else . Does your pain feel like a uti ,?

[sarahalice in reply to Simonebirds]

Yes, in the UK its know as a smear test.

Do you know if you suffer from virginal dryness? This is a common symptom of Sjogrens, it might be causing you pain.

UTIs are also a common symptom of sle, not sure if it is with other autoimmune conditions, or if it's caused by the illnesses themselves or the medication we have to take. I am lucky as I don't suffer from UTIs, my pain doesn't seem linked to going to the toilet, nor feel like a UTI.

Best of luck with finding out what's going on.

[Simonebirds in reply to sarahalice]

Dryness yes .

[Simonebirds in reply to sarahalice]

Good luck with your results as well .

[dg70]

yes I have, twice recently. Burned like fire everywhere down there and itched like mad. I think infection is easy to get as our skin inside and outside the vagina can easily tear and bleed and let infection in. Mine kept me awake most of the night for days. I couldn't wipe without yelling. It was a staphylococcus infection in the end which needed antibiotics which cleared it. Just waiting for further investigation as to cause but could just be wiping behind getting into a small cut or tear at the front. It's agony. The gp did a swab when it flared up and that's how we found out. If it doesn't go anti biotic might be needed. I've since become allergic to penicillin so not sure what the drug of choice will be now but penicillin is the drug of choice for this it seems. Thrush and UTIs are regular for me. Had to stop sex and find other ways as it was making it all worse. I'm on estrogen pessaries and hrt gel but early stages so not sure if that works at all yet. Vagisil wipes not cream were the only soothing relief short term and a prescribed antibiotic cream from dermatologist. see your gp or rheumatologist have a chat if it keeps occurring. Hope all goes well.

[Simonebirds in reply to dg70]

yes we have spoken before wow this disorder is serious I now see. Glad you got some relief . Think bsttess def flares this condition

[Simonebirds in reply to dg70]

hope it gets better for you as well , such an odd disorder . How old are you ? Am 46 soon 47 . Sure like approaching 50 doesn’t help

[Simonebirds in reply to dg70]

hey hope all

Is well how have you been ? Any relief sincr last post about female issues ?

[dg70 in reply to Simonebirds]

Im pretty sure i have Lichen sclerosis. Great fun. Especially when it turns into a staphalacoccus (not sure i spelt that right) infection. Had one more flare up, took penicillin again but found I'm now allergic to it. Can't risk sex again which has taken time getting used to. Sorry sharing too much there! Husband very understanding though. Life with autoimmune, its mean sometimes. Still I'm alive, got a good family so bonus there. You feel like telling your body 'leave me alone' but I think it's selectively deaf! 😆 hope you're OK at the moment.

[Simonebirds in reply to dg70]

omg can I private message you ? Am

Going through crap now mysejf but my hubby is not understanding ,

[dg70 in reply to Simonebirds]

Yes you can. I'm not sure how you do it on here.

[Krazykat26 in reply to dg70]

On the tool bar at the top n tap on the plane Chat then you can search for the person you wish to message. Then it's just like sending a text 🤗💜🌈xx

[dg70 in reply to Krazykat26]

Thanks.

[Simonebirds in reply to Krazykat26]

thank you

[Krazykat26 in reply to Simonebirds]

You're welcome 🤗💜🌈😽😽xx

[Simonebirds in reply to dg70]

can I ask you question . Do you ever get like soreness or pain on the Vulva ?

[dg70 in reply to Simonebirds]

Yes. The balance activ cream twice a day all over the vulva helps a lot. I try not to scratch there. I don't have baths much now just showers. Still get white patches and lumps. I need to book in with a dermatologist again I think and try and get a proper diagnosis. I know it's not thrush it's so different and constantly niggling me and it's more top of vulva than down by the vagina. Hope that makes sense.

[Simonebirds in reply to dg70]

I wanted to comment privately but not sure xx you are very transparent and it’s women mainly dealing with this so here it goes , Are you sure the issues you dealing with are relating to sjogren ? There are some women who I mask and they don’t suffer with this on that kevel . Sorry you are dealing with this, Last we spoke I had the horrible uti , it’s gotten better but I don’t desire sex like lately . The feelings of discomfort go and come and it makes it non desirable but am still young . 47. Sorry so long

[dg70 in reply to Simonebirds]

I'm 52 in the middle of menopause. I'm on hrt and estrogen pessaries too I forgot to say. I kind of think this is just another autoimmune condition to add to lupus and sjogrens and periperal neuropathy. Until I can get an appointment and biopsy with a dermatologist then I have to manage with what I have. I just know that anything that tampax or sex seems to cause rips inside and infection gets in and also the skin outside gets sore and itchy every so often but I have trimovate cream which has an antibiotic which so far has stopped it getting worse or a staph infection getting into the sore and bleeding areas and sending the pain through the roof. Having thin skin inside and out the vagina is not unusual with sjogrens.and also menopause in the mix. My Rheumatologist gave me notes from a conference just on this issue. Not seeing her until May so I'll see if I can get a clearer picture and referral for this as it could be gynae.

[Simonebirds in reply to dg70]

thanks for your transparency . You have a great hubby to be understanding , so sorry you are dealing with this . I would love to see the notes from the Rheumatologist from thst conference. Not your personal record but from the literature

[dg70 in reply to Simonebirds]

I'll see if I can dig it out and copy it. I think he doesn't want to be the cause of any more pain for me. We find a way to be intimate it's just adapting to circumstances. You may find menopause worsens thing. I started off just eyewateringly painful sex and infection nearly every time afterwards but over a couple of years it just got worse but I was not diagnosed with anything at that point. At least I know why there was pain now. I hope you get to find out the root of your issue. I'm a real digger I just keep going till I get an answer, I hate not knowing for sure.

[Simonebirds in reply to dg70]

I know the pain is sjogren and I was diagnosed however my lubrications came back nicely then after Covid/ stress and a nasty uti seems the dryness and other crap just came back . Also after Covid and stress ky numbers ( titers ) increased .

[dg70]

its a pig and Its got worse this last year. Seeing gp next week so maybe get a gynae referral. I have used a moisturiser twice a day everywhere down there it's pH balanced and so far the last couple of months it's kept things at bay. The rheumatologist recommended it it's called balance activ. Might be worth a try. Amazon sell it.

[Simonebirds in reply to dg70]

thank you

[dg70]

52 and still in menopause that seems to never end!!

[Simonebirds in reply to dg70]

did you

Ever have covid? Asking cause I did and maybe it’s why some symptoms flared .

[Simonebirds in reply to dg70]

hello did you ever go back to your doc laser we spoke you had someFemale issues . Did anything come

About from it ?

[dg70 in reply to Simonebirds]

I have asked for a referral to Bath centre for rheumatic diseases which is a lupus centre of excellence. I'm hoping for a full chat and workover. My rheumy is great but it's private so getting costly and she'smuch more a sjogrens expert. I'm trying NHS now more issues are coming on the Lupus side. 26 week waiting list though!

[Simonebirds in reply to dg70]

you think

It’s lupus now ? Last we spoke it was some female issues , burning : dry : among other things etc

[dg70 in reply to Simonebirds]

I have lupus and sjogrens syndrome diagnosed last year. Only took about 20 years to get there!

[Simonebirds in reply to dg70]

oh my I didn’t know you had both Let’s keep fighting. Did the female issues improve any ?

[dg70 in reply to Simonebirds]

They are at bay at the moment, since using a ph balanced cream every day twice a day, organic cotton pant liners and unbleached cotton knickers, it seems to keep the itch and burn away. Although maybe it's wishful thinking, you know what it's like you think something is under control and then it pops up again. Or something else just as unpleasant appears somewhere else on your body😄

[Simonebirds in reply to dg70]

that’s how it is ? It does seem

Like it’s things appearing all over the place . Random , goes and comes

[dg70]

yes I had covid about 3 months ago. It was quite mild. My husband got it a couple of weeks ago but I didn't get it again, it was a few days after we got the vaccine. Strange but hopefully it means you can't get the same strain of covid again. This is the first time my lymph nodes swelled up from a vaccine though.

[Simonebirds in reply to dg70]

having Covid o think inflames other issues in the body . Like I was just thinking maybe it’s why we were having some issues now more persistent .

[Maips in reply to Simonebirds]

Hello, I had mild covid in March. I believe it had an impact on my period in April and May - 3 periods in a month! Very bizarre. I'm 38 with mild sjogren's and have experienced a lot of dryness/itching below lately. Stresses with marriage probably hasn't helped. Tried Vagisil products but E45 is the best, for me.Hope you find some comfort.

Period

[Simonebirds in reply to Maips]

sorry to hear , my new pcp said Covid can definitely cause other underlying issues to become more infkammed and awaken those issues , if this makes sense . Hope you feel

Better soon , thanks for responding .

[OldTed60]

yes - I was told this was provoked vulvodynia but as I have diffuse small fibre neuropathy of Sjögren’s I think it’s actually this. I am post meno so definitely not cycle related for me.

[Simonebirds in reply to OldTed60]

sorry to hear . Seems these conditions flare then settle .

[OldTed60 in reply to Simonebirds]

yes but also forgot to say that lichen sclerosus is an autoimmune that can make vulval skin itch, tingle and burn. I had a vulval biopsy for this in May but nothing showed. Might be worth a self exam just in case as I do have oral lichen planus and am very immunesuppressed so maybe inactive at the moment.

[Simonebirds in reply to OldTed60]

I totally get it . We women go through so much . Too much .

[dg70]

Not sure if you got my message as I sent on a private chat. I have the notes on female issues from my Rheumatologist. I scanned and pdf but not sure if I can privately attach them to you. As I don't want to make them public can I email you them? If so send me your email details. They are very informative and worth a read.

[Simonebirds in reply to dg70]

omg thank you please do. [e-mail]

[Simonebirds in reply to dg70]

please check your email

Thanks .