Support needed please

Hi .....I'm sorry this is going to be an outpouring of tearful misery !

I was diagnosed with Sjogren's about 15 years (but had it for much longer.

I take Hydroxychloroqine and Mycophenolate and have regular blood tests.

About two years ago I saw a surgery nurse because l thought I had thrush (vaginal) and she gave me Canestan cream. I mentioned I was a bit swollen and she nodded her head !

At the time I had peripheral neuropathy in both feet and this started up in my 'undercarriage' About six months later I went back to a GP because the neuropathy and feeling of fullness were getting a lot worse. She examined me ,said I was very dry and otherwise everything was OK. She took a swab and gave me a Thrush tablet. The swab came back negative. A few months later I saw another GP told him about the swelling and he gave me Sylk. Finally I saw by own GP who examined me and said everything looked normal.....steroid cream !

Luckily I saw my Rheumatologist soon after. She said it must me Vulvodynia and started me on Gabapentin . That upset me and I now take Pregabalin. While the neuropathy has calmed down a bit the feeling of swelling is now giving me difficulties peeing late evening when thing are always at their worst.

I am really giving up now as I'm not getting any answers. Has anyone got any ideas ?

I am 72 and counting !

11 Replies

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  • Hello bones-bones

    Am vvvv much feeling for you...we share a lot of similar stuff....and I'm on daily hydroxy + myco + pred + amitrip (for SLE, SS, EDS, PID etc). I'm 62

    I don't want to confuse matters, but your story gives me the impression that the medics investigating your undercarriage issues have been struggling to come up with a convincing diagnosis. I went through a similar series of false diagnoses & ended up with the correct diagnoses: early onset sjogrens (SS) combined with lichen sclerosus (LS)...LS is often misdiagnosed in the way your undercarriage probs have been....mainly because medics aren't usually familiar with LS. If poss, I'd urge you to see a dermatologist or gyn working in a dedicated Vulva Clinic (they're more likely to be familiar with SS & LS).

    Perhaps LS isn't your issue, but even if this is the case, you clearly need & deserve investigation & diagnosis by a more experienced clinician. I'd urge you to see a vulva specialist ASAP about this: LS can & does affect the urethra...I am feeling v concerned about the probs you're having peeing. A good vulva specialist will also assess your pelvic floor fitness & give you an appropriate treatment plan (my neuropathies make this especially important to keeping my urinary tract functional)

    My mother was diagnosed with LS in her 80s: the gyn told her the practice had never seen such a severe advanced case, yet within a few years her LS came under control. My LS was finally diagnosed in my mid 50s...the effectiveness of my LS treatment plan is enhanced by my systemic SLE + SS meds, and the effects of my LS treatment plan (outlined below) has been cumulative over the years...thanks to my oral meds for immune dysfunction + my topical meds for LS, my LS is now in pharmaceutically induced remission....which means conscientiously continuing to follow all my treatment plans

    The LS + SS undercarriage treatment plan that helps me most ongoing is:

    Avoiding exposure to soaps & perfumed products down there

    Only wearing loose clothing made of breathable fabrics

    Only showering in lukewarm water (no baths)

    After showering, soaking undercarriage in water containing the emulsant antimicrobial emulsiderm

    Inserting Replens MD vaginal moisturiser regularly

    Applying the ultra powerful topical prescription steroid dermovate regularly

    I live in the uk, so the types products I'm prescribed (above) may have different names where you are

    🍀🍀🍀🍀 coco

  • Gosh the list of miserable experience linked to Sjogrens is awful in both senses of the word! Re-reading you post though I am not clear about what your Question is?

    I would offer you a perspective that I have adopted over the 25 years since my head injuries, undiagnosed Sjogrens and Central Alveolar Hypoventilation...

    Essentially medics know virtually nothing about what goes on in the brain; yes they have expensive hi-tec scanners and can now sometimes operate on bleeds and tumours but apart from that it is really wait and see, you could try this or (the best option) farm you out to another specialist. No, I came to realise that the key player and battler on my behalf was in fact my own brain! It was doing its best to juggle and compromise/prioritise coping with the imbalances and deficits that the damage has thrown up. So I am very aware that my conscious brain is not the be all and end all but must support its silent, and far more important, sub-conscious brain 'partner' by cooperating re sleep, water, nutrition etc. This occult brain is doing a wonderful job andmaking the best of it!

    Anyway I will leave it there and also mention that 'happy pills' are also an essential part of how I cope. When one has finally found the best pill and the optimum dose ( a lengthy process sometimes as GPs start with their standard prescription) it is a very effective cushion that shields one from the powerful emotions that can rise up and assault one at times...

    Thinking of you!

    Caroline

  • The Peripheral Nuropathy can effect your bladder and kidneys maybe you need a referral to a Nephrologists I had your symptoms, my bladder was retaining fluid and not fully emptying and my kidneys were leaking, you need a specialists rather than a GP my doctor said our syndrome is too complex for GP's

  • Thank you for your kind and helpful replies. My GP is a dermatology expert and said everything looked normal so I assume he didn't see any signs of LS. I follow your treatment plan Barnclown plus Ovastin as and when.

    My Rheumatologist isn't local. She is excellent with my SS and is 'joint carer' with my GP. My bloods are always ok.

    I sometimes wonder if this could be Pudendal Nerve Entrapment but that is also treated with Pregabalin. And I'm not aiming to have any surgery !

    I live in the UK (South) Maybe it's time to find a vulval specialist.

  • This is good: you're v experienced already! Even dermatologists can miss specialist conditions: my local NHS dermy missed my lupus rashes for decades (she called them dermatitis).

    My experience is that only dermatologists who work in vulva clinics tend to be able to expertly diagnose complex cases like ours. Also, my impression is that often the versions of vulva issues we complex patients experience can be harder to diagnose than those of more ''normal patients' with more straight forward & easily distinguishable solitary probs..

    🍀🍀🍀🍀

  • Maybe this may be of some help. We who have SS are dry on the outside and the inside so you need to moisturize all the time. i suggest trying and taking coconut oil which you can get at the supermarket. I buy a jar of it and you can put a spoon of it straight into your mouth where it will melt or you can put it on food. I do a dessert spoon each day and this will help keep your internal organs in good health. There is also flaxseed oil and omega 3 which can help.Too much sweet stuff in your diet will cause thrush and also antibiotics. Maybe the oil might help. I do know it is so frustrating to get information or help from the medical profession as they don't seem to know much about this disease and are inclined to hand the problem onto someone else. Also if you are old (I am too) they seem to not be bothered too much. As for the Hydrox it can after continuous use for too long affect your eyes. Are you having them checked at least twice a year by an eye doctor? Sorry I can't help with the under carriage problem but coconut oil is a great healer. Good luck.

    Traveller.

  • Tasso.....Thank you for your help and ideas. I am in the uk but I think you must be in Australia ?

    I had thought of using Coconut oil.....both eating it and applying it. I hope it tastes nice ! Do you get the liquid form ? Yes I have my eyes checked regularly and so far so good. You're right about GPs. They are so busy and ten minutes doesn't get you very far so I do a lot of googling and

    suggesting ! In the great scheme of things I suppose it could be a whole lot worse.

  • Hello bones-bones. I'm in Scotland and am only newly diagnosed with Sjogren's, having been misdiagnosed with and treated for RA for five years. My gynae and bowel issues are really causing me trouble these days and I am baffling doctors. Like you they can't find much wrong apart from severe atrophy and scarring from episiotomies of old - and my cervix is very eroded.

    I haven't been examined since my rediagnosis of Sjogren's a few weeks ago but thrush and cervical cancer have been ruled out. As this is my primary disease I think SS goes right back to my youth prior to hypothyroidism. I'm 53 now.

    I've been given oestrogen pessaries and now the GP says these are to be stopped because she thinks they must be responsible for the watery white discharge I'm experiencing. However this started prior to me using vagifem and I've requested a referral to gynaecology. Long wait though.

    I also have a distressing sensation of fullness and aching in my pelvis that feels rather like pre-menstual pain I used to suffer prior to my early menopause.

    I'm being investigated to rule out non Hodgkins Lymphoma just now and the rheumatologist did find a swelling in my groin. Maybe worth asking for a CT scan of your pelvis with contrast just to rule out anything sinister?

  • Make sure you get Virgin Coconut Oil it should look really white or when melted look clear like water. If it looks off white the medicinal properties are not as good.

  • I don't have anything to offer other than I feel your pain and wish I could give you a hug xx

  • Thank you Mrs de K.......that helps ! This isn't the kind of thing you can discuss at polite tea parties so I haven't told many of my friends in real life !

    Tasso I got some coconut oil and it really helps......thank you.

    Twitchytoes let us know how your investigations re Lymphoma go.

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