Female issues ?

[Simonebirds]

Does anyone get feelings of UTI’s , pelvic discomfort ? I am trying not to lump everything under sjogren however , it’s systematic disease so it’s hard to really tell .

[Chris21]

This problem is probably due to Sjogrens. I was getting frequent UTIs with pelvic discomfort. Went to see urologist, had scan, everything normal apart from no moisture which encourages bacteria to stick to the lining apparently. He suggested a cream with estrogen, I couldnt get on with it as it caused more joint pain, after trying various creams I’ve finally found one with no ostregen that seems to help. ( other people find the osteogenesis cream works well ) I’ve been UTI free for 3 months now, which is great as I was getting them every month.

[NorthAtlantic in reply to Chris21]

Same story here except that I had discomfort without getting UTIs; all tests were negative.Moisturising helps: Yes, Yes, Yes Water based lubricant and various pessaries; maybe use oestrogen-based ones sparingly once or twice a week.

[Chris21 in reply to NorthAtlantic]

Yes, yes, is the one that seems to be helping me so far…. I’ve also taken to using their foam wash, it’s a case of whatever works. Nothing worse than those pesky UTIs I’ve also taken to getting the urine test strips to check if the ph balance is ok. What medication do you get for UTI? I have trimethropin. There was one that I was given when I had excruciating pelvic pain that was brilliant. The name doesn’t spring to mind at the moment, it was an antibiotic that you mixed in water and could only have one, the GP was serious about I must follow the instructions, I thought how’s one powder going to fix it but ! It did and (touching wood) I’ve not experienced that pain again, I’m back to the normal niggles.

[LindyK in reply to Chris21]

Are you referring to fosfomycin? My uro/gyn gave me the same Rx. Doesn’t work for tougher UTI strains though (like klebsiella).

[Chris21 in reply to LindyK]

That’s the one! I didn’t believe one dose would work but it certainly did the the trick for me. Fortunately haven’t had the pain so bad again.

[Simonebirds in reply to NorthAtlantic]

Hello and thanks for your response . So in your case it was not a uti But felt like one ? Was it like pressure / burning type discomfort ? Any spasms in that area as well ?

[Simonebirds in reply to NorthAtlantic]

Hello do you felt like you had a uti ? But it was nothing ?

[Simonebirds in reply to Chris21]

Thank you for responding I really appreciate . My dryness got better but seems like things shifted a little . The uti / pelvic feeling is the worse and the doctors don’t seem to know much about sjogren to begin with . It’s all a mystery to them .

[LindyK in reply to Chris21]

Same story here. What is the name of the cream that helps with no estrogen in it? I can’t use estrogen cream either. I get frequent UTIs and have interstitial cystitis.

[NorthAtlantic]

Yes, all of the above and mysteriously no UTIs detectable. I had numerous ultrasounds and pelvic scans as I was so worried but all of them revealed that there was nothing wrong in that area.. Yes, the main problem is that so few doctors know anything about the condition and some can't even pronounce or spell it properly...

I think, but may be wrong, that the dryness of the intestine causes general digestive and bowel problems which sometimes seem to affect the pelvic area. My pains were so bad at one point that I thought I might be about to have a period, although I've been through the menopause...

[Simonebirds in reply to NorthAtlantic]

I was feeling the same like a period was coming on . You are hilarious about doctors and the inability to pronounce or spell this correctly it’s so true . I just had a pelvic exam . Through diet changes the lubrications came back for me and am not sure why this is going on . I really appreciate your response . Are you active on this site ? I use to post then saw like minimal responses in the past and I stopped. But this very much helped me today .I appreciate .

[dg70]

Yes it's gone into hyperdrive since menopause. Thrush, uti and recently it turns into a burning fire of staphylococcus infection in the vaginal area as a whole. I have hrt gel, estrogen pessaries for dryness in that specific area. I get less infections but when I do they're hard to shift without antibiotic. My Rhuematologist said we are so prone with sjogrens to infections as we're extra dry down there with thinning skin and more prone to tearing skin inside and outside the vagina which let's infection in. It's important not to use soap, use emollients. She also suggested organic cotton pants, white not dyed black. Organic toilet roll and pant pads. Also she told me of a vaginal moisturiser to use every day which is especially pH balanced l to our natural vaginal moisture it's called balance activ intimate soothing cream. I've just switched over to all this and hoping it helps. The cream is a dream for when you're sore or itchy. Vagisil wipes are great for numbing soreness and itching. If you have internal pain you usually need antibiotic to get rid though as you can't risk it getting to your kidneys. Hope that helps. A lot of that was from meeting notes my Rheumatologist gave me from a talk she had been to given by a Gynaecologist recently. If it keeps being an issue go to your gp. I'm due to go back shortly about this issue myself.

[Simonebirds in reply to dg70]

This helps immensely . I am on antibiotics currently . This is so odd . I was doing wel then boom . I must get a competent doctor like seriously . Learning most from you here unreal .

[Chris21 in reply to Simonebirds]

Let us know if you find a doctor that knows about sjogrens, most of what I’ve discovered is looking at these forums/BSSA and lupus uk and then going to the gp and telling them what I think I need

[Simonebirds in reply to Chris21]

This is insane ! Like seriously and yes I will . 🫶🏽

[dg70]

I know, they have really helped me too. Try bssa webinar on you tube from Dr Elizabeth Price. She's my Rhuemy and so helpful. It's a good insight into Sjogrens if you haven't seen it. You need to ask your gp if there is a Rheumatologist near you who has a good up to date knowledge of Sjogrens although they are few and far between. Try looking them up on private hospital sites like bupa or bmi as it gives a good write up of each Rhuematologists particular interests then go back to your gp and ask to see them if you find one. There is a lot of detective work we have to do. I see mine privately and she gives me about half hour for £100 to £150.

[Simonebirds in reply to dg70]

Thank you so much it’s been years and a litany of issues . All discovered by myself , these doctors have been clueless . They just present dry eyes abs mouth with this . So not true . Bye diet changes an improve and even heal this disease .

[dg70 in reply to Simonebirds]

No healing I'm afraid but we can manage symptoms. Are you on Pilocarpine or hydroxychloroquine they were the first meds recommended and are working quite well? Again these would be through a Rheumatologist. I found the seminars on Lupus uk and BSSA most helpful. Most doctors have a little knowledge of Lupus which I have as well but Sjogrens forget it. I told my practice nurses to look it up and be on the look out for it. They had never heard of it. The last two years since diagnosis have been a revelation. I thought the GP would tell me everything but it was vice versa. Covid hasn't helped continuity of care. Looks like you, like me, have been years with this but only recently diagnosed. You probably know this but when I said look up private Rheumatologists I meant to say that they all generally work in the nhs as well but there is no means to ask about or research them as there is on private doctor websites. It's all a learning curve 😀😜So far London and Swindon come up pretty high for Lupus/Sjogrens experts. I hope you find a decent Rheumy soon as they write to your GP telling them what they want for you. It helps!

[Simonebirds in reply to dg70]

Well it can be healed I just need dedication . Look up Dr . Brooke Goldner , goodbye lupus on the gram . Through smoothies / water / salads she is reversing disease . Look it up please .

[dg70]

Sorry always sceptical about these bold claim people. I cannot find her true qualifications either. A low fodmap diet is recommended by Rheumatologists and again may help us a lot with symptoms. Its like the bold claims of curing cancer there is no cure just an easing of symptoms and remissions and looking after ourselves and our symptoms. Be careful of any so called remedies even herbal as they can make you sicker if you haven't discussed them with your GP. Some things like arnica or ginseng orally can make you very sick if you have kidney issues. It's a fine balance and supplements and specific diets have their place but not if they damage other organs in the process. Be careful I've been very sick indeed on herbal recommendations. Be careful of recommending to others without a full medical history of that person. Natural remedies are more potent than you think sometimes and drastic diets can cause harm. If these cures were so good they would be in the mainstream already and none of us would have Lupus or Sjogrens or anything else. There is nothing like rest and more rest, meds and a good varied low fodmap diet to keep you on an even keel. Don't waste money on anything until you've checked it out with a Rheumatologist or Dietician. My sister in law was vegan and died of pancreatic cancer at 57. Didn't smoke or drink either and was thin and fit. They have to work out and target specific genes that cause us to have these things in the first place, that's where the cure will be and working out covid vaccines has begun that journey let's hope. I am a true sceptic unless I meet someone in person and discuss it through and then go to other specialists and discuss it with them and then research some more! I went to three consultants and two GPs before taking HRT😆

[Simonebirds in reply to dg70]

Wow I understand . You are very skeptical .sorry about the loss I loss my best friend to PC and still grieving , I will continue non my path as I do believe in healing. Thanks for your input , be well .

[dg70]

Yes sorry, I just feel strongly about these internet preachers making money off of other's pain and exasperation. I am negative now on my blood tests except dsdna which is just borderline like the lady you said about but I still have Lupus and Sjogrens. My eyes, mouth, fatigue etc.. haven't been told that my blood is negative😀 Blood is only one part of diagnosis. My niece is a Dietician and has not heard of any miracle diet cure for our condition. Sorry about your friend its a pig of a cancer with just about no hope once diagnosed. I have another friend who is terminal with endocrine cancer which is a longer living one. She always jokes that people are always trying to tell her about miracle cures. She laughs that multi millionaire Steve Job's of Apple had the same cancer diagnosed at the same time as her and he went the alternative route, no chemo and he's dead. She is still alive and outliving him by three years now and now in remission after 11 years of having it because of a ground breaking primary tumour clipping operation at the Royal Free which shrunk them all for the moment. Conventional medicine has its place too don't write it off although hopefully you're mixing the two.

[Simonebirds in reply to dg70]

Yes both have its place . Steve Jobs’ was too far along like my friend . It’s sad. My labs are Just borderline and am thankful but I do have some symptoms but am managing through diet . And you are right about some opportunistic scammers as I got caught out there by one . However , Dr Brooke is a board certified doctor . But I understand your concerns . Was Just passing along information These dietary things require strict strict changes but slowly am doing them .

[dg70]

As long as you're staying healthy and not expecting miracles I hope it brings you the improvement you would like. Yes I noticed she was a qualified Psychiatrist not Dietician or Rheumatologist so take with a pinch of salt. Let me know if you see any improvements and compare it with the low FODMAP diet which is a recognised diet on the NHS and had some good effects for Lupus/Sjogrens and you may find it's very similar anyway. I can't go Vegan, I hate vegan chocolate. I need real chocolate in my life 😆

[LindyK]

Yes, I have had pelvic pain and pressure and UTI symptoms as well as UTIs for over 25 years. My diagnosis is interstitial cystitis (IC). Later learned I have Sjogren’s (seronegative). Many rheumatologists don’t seem to know much about IC and if they do know something about it, they don’t associate it with Sjogren’s. However I have read many studies and papers suggesting IC is associated with Sjogren’s. Frustrating that both Sjogren’s and IC are understudied.

[Simonebirds in reply to LindyK]

thank you for sharing your knowledge.