Menopause Matters Forum
Menopause Discussion => Personal Experiences => Topic started by: Midnight Shadow on September 22, 2014, 06:11:37 PM
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Please please can anyone recommend a barrier cream for my burning urethra.
Am using Vagifem for Atrophy, but needing a cream to soothe the outer skin which burns and stings after spending a penny. Sometimes put off going to the toilet which I know I shouldn't do especially as I have 3 kidneys. Betnovate was prescribed but it seems rather strong and burns me even more. Wake up hoping that it has all burnt itself out, no such luck. Love and hugs to all women suffering menopausal symptoms. Replies appreciated. :-*
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Sadly there is nothing I can recommend to stop the burning. I still get this burning but not when I pee - I mostly get the burn when I've been sitting down and getting too hot. I actually found the that Vagifem made me burn more. I'm using the Estring instead. Have you tried half a teaspoon of bicarb in some water (perhaps add a little cordial to make it taste better) as this will neutralise your urine. You need to cut out all caffeine and any citrus in particular - so anything acidic. I assume they have ruled out an UTI?
The burning to really awful - I can so empathise :-X
DG xxx
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Thank you for your quick response. What we have to suffer, just not fair. Always think though there are people suffering much more than me. Yes I have been checked for a Uti and I do check regularly for them. No uti which I am pleased about. Apparently it is all to do with the Vaginal Atrophy and tissues in that area. Haven't noticed the Vgaifem burning, so that's good. Yes like you, sitting makes it much worse. Thought I might try Aqueous Cream. Amy happy to try anything. thanks again. ;)
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I'm afraid it took about 6 months of using local oestrogen before I got a reduction in the burning. Though I told a variety of doctors about this burning over the last 14 or so years it was only last autumn when I told the practise nurse at my new GP practise about this problem that I was told I should have been given local oestrogen much sooner. I have obviously been suffering with VA all this time even though I was using HRT. I had a premature menopause but only had a very low dose of HRt until about 48 which was probably not enough!!! Apparently systemic HRT doesn't always help VA and in fact I may still have to go back on systemic HRt as well to get proper relief. My GP mentioned that I could only use local oestrogen for 2 years but I will fight this - I can't go back to that dreadful burning all the time. I hope the Vagifem helps soon. DG x
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I get plastic drink bottle filled with warm water, and poor it over me at the same time as ping, dab dry and then put yes oil based cream down there.
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Hi
i was given Eumovate cream at one time to use on the vulva - i used it for 3 months before going back to see a consultant. It is a steroid cream which is meant to reduce inflammation - sounds similar to Betnovate you have for the urethra and i agree is probably too strong and may well be causing more irritation.
Vaseline was suggested to me by GP as a urine barrier - i used this for some time also but found that it mixed with the white fillers that come out of the vagifem - my vulva skin went quite greyish and matt in appearance after a time - i probably used it for too long. I think vaseline is too cloggy for skin down there.
Another doctor recommended Emulsyfying Ointment to use a teaspoon full with a little water to wash with when my vulva skin was looking quite red - this sounds similar to the Aqueous cream which i haven't tried.
On another forum i found that Waitrose baby bottom butter - think that is what it is called - had helped - it has natural ingredients in it like olive oil. I found that it irritated more.
Also tried vitamin E oil squeezed out of capsules after a forum read but gave up on that as well !!
i read somewhere before about your burning with sitting - could i suggest that you look up Hope Pudendal on goggle that will take you to a website that on the left hand side has a symptoms button that will take you to a page that explains Pudendal Neuralgia. Pain on sitting is a symptom of the pudendal nerve being irritated and may be the reason for some burning.
A physio recommended drinking at least 4 pints of water a day to dilute the urine, washing with a squirty water bottle filled with water or getting in the shower after urinating especially the first pee of the day which is strong or even peeing in the shower. I too have stopped drinking tea and coffee to avoid tannins - gynae suggested this.
Sorry this has turned into quite a few negatives but what didn't work for me may work for you. :)
Hattie X
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So kind of you all to reply. What a wonderful site this is. Yes, last year I had treatment for Pudendal neuralgia from an amazing physio. She has been a life safer to me. That condition cleared really well. Will look at the hope pudendal site. Thanks for the recommendation. Like Hattie, every cream I tend to use burns. Will try the plastic drinks bottle idea. Also use salt water, not so handy when at work but soothing all the same. Had two bad days of burning so hope for a better day tomorrow. Thanks to you all. :o
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Perhaps a low dose oestrogen cream- Gynest - might help things settle down?
Think it can be used with Vagifem but worth checking.
Seem to remember other ladies have commented about burning with Vagifem.
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Unfortunately Ovestin and Gynest made me burn as well - I think it is the fillers that irritate - that's why I'm using the Estring as it is simply a latex ring that slowly releases oestrogen. I think it gives a slightly higher dose as well. I did notice that my burning returned about 3 weeks towards the end of the 3 months you keep it in place, so I think it was running out of oestrogen. I may see if I can change it earlier next time.
The old version of Vagifam was 25mg but the new lower dose of 10mg is often not enough for many women and they use it 3 or even 4 times a week and also do the 2 week reload once a year. DG x
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Have you tried Sudocream as a barrier. It's used for babies but also in care homes and hospitals for bed sores.
It's very gentle and almost impossible to wash off.
Honeyb
x
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honeybun - years ago when I mentioned the burning to a doctor at the meno clinic she suggested I use sudacream and it burned like hell - it's so strange - anything other than special feminine washes and aqueous cream tend to burn. I do use Multi Gyn Actigel quite regularly to keep things healthy down there - this can burn a bit but is generally quite soothing. Even at this meno clinic in North London they didn't suggest local oestrogen treatment which I find baffling.
I think my urethra has collapsed as when I had a cystoscopy they stretched my urethra (most unpleasant) and I was peeing straight for a couple of weeks afterwards - it went back as before quite quickly. I pee at least twice a night (often 3-4 times) and I think it is because when lying down there is less pressure on my bladder and urethra and the bladder can fill better - this is my theory on my problem. During the day, when upright and particularly when sitting, everything is squashed. I am usually pain free for the first few hours in the day.
Some ladies report that they are treated for a low grade infection that needs a long term antibiotic. I am really concerned that over use of antibiotics seems to be standard.
This urethral burning seems to be relatively common yet there is little general knowledge about it. It must be related to the menopause and VA - I do think gynaes and urologists need to get together to work on diagnosis and treatment properly. DG x
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Dancing girl
Maryjane and Judith57 are seeing a top uro/gynae privately in London and it sounds like you live there. I am sure that they would pm you a name.
This is someone who understands the pudendal nerve and has other contacts to help.
My understanding is that the lowdose antibiotics are for weeks rather than longterm but MJ & J57 could tell you more and that may not be necessary in your case.
Hattie X
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Midnight Shadow
I used 25mcg vagifem and when it changed to 10mcg had Ovestin cream prescribed as well - this is a hormone cream 1% Estriol weaker than Estradiol in vagifem.
Do you think that the urine is causing the burning or is it the act of urinating as i think there is a difference ?
For me urine on the vulva makes it burn.
Hattie X
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Hi
I get this too and this may sound weird but I find taking acidophilus helps. Not sure why but it might be worth a try. I take a capsule as soon as I get that uncomfortable stinging and it seems to help.
Libby
x
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Dancing Girl
have just read through your Burning Club thread which i hadn't read before - so my last post may be irrelevant.
Hattie
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So kind of you all to reply. What a wonderful site this is. Yes, last year I had treatment for Pudendal neuralgia
Midnight Shadow
Could i ask you please for the name of the physio that you saw - i am assuming that you are in the UK.
If you do not want to put a name on the forum i could send you my email by personal message on here.
As a new member you may be able to Personal message me as you have now done 10 posts but i am not entirely sure about that. Just click on my name and send a pm should come up
Thank you for your trouble if you are able to.
Hattie X
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Hi Midnight Shadow, I would be going back to your physio asap as I wouldn't be surprised if your PN isn't raising its ugly head again, the more we go into meno if we have this problem the more it needs to be nursed as once you have it, it is like an old back injury etc.
I started off two years ago after having polyps removed from my womb, with a burning urethra when I pd, backwards and forwards to gp,local Uro/gynae etc didn't get any better, so started my journey cut a very long story short I have PN which is seen more often in menopausal women than is realised but is misdiagnosed.
I then went to see a Uro/gyna and I have e-coli with a thickened bladder of 7mm this is extremely thick it should be about 3.5mm, so I have been on ten weeks of rotational antibs, saw the consultant six weeks ago and it had gone down to 2.5mm even he was amazed, but I still had infection, so had another four weeks of antibs.
I now know which antib got rid of the infection and it was Nitroformin (sp), as I changed after two weeks to ciprofloxin and within four daysi was in quite a lot of pain again, I have been off the antibs for two weeks now, I tested my p yesterday and I have, blood +2 , leukocytes off the scale plus nitrates and a touch of protein, so it is looking like my infection is back.
Slightly going off track but my dog had exactly the same problem, three months of antibs and half her bladder removed because the infection had done so much damage, incidentally caused when she was spade, they see it quite often ( far more than they let on). She had formed pockets in her bladder where infection lived.
Back to humans, I have not been on antibs for 25+years or any form of medication and I hate being on it, however my infection obviously has taken a hold and has formed these pockets of infection, long term untreated UTIS can cause untold nerve damage as Judith 57 and myself have found out to our cost.
Two days of antibs and my pain reduces dramatically, I am very aware of the long term use of antibs ( daughters a vet ) however I can't do right for doing wrong in this situation, I just hope my lack of having them over the years helps, grasping at straws here, but I get checked every month for thrush, and so far none and my PH level is spot on, some people never get thrush however long they are on antibs.
I also wake up pain free and don't start getting uncomfortable until about 2.00pm, I have been told by three eminent specialists that this is the nerve/nerves firing off as the day progresses, if I lie down and put my feet up above my head the pain generally goes within ten minutes.
I am also on cimetidene as this has antinflamatorie in 70% of patients, with blader pain. Painfull blader syndrome/IC does not respond to antibs, and there is a high chance I will be left with this after the 18 months of undiagnosed UTIS.
I was given steroid cream burnt like crazy, you can ask to have it made into an ointment which does not have all the additives added, as they will be what you are reacting to, but I just use actigel (same as honeybun, can't remeber proper name), and the yes oil based stuff, if you touch the end of urethra does it hurt? Mine did I went through the roof the first thing to stop hurting after I started the antibs was that, however it's all flipping back now. :'(
I am going to try local oestrogen again, to see if that helps they are not keen on me having the oestring as they don't want anything left up there.
I have given up all wheat/gluten/dairy and processed sugars, and just eat pears as these are the only bladder friendly fruits, since giving up these items my energy has really really increased, and my IBS bloating/wind has gone. I drink coconut milk, and coconut yogurts which have a soothing effect, they say about bladder pain/urethrea that if you where to have an open wound on your hand, would you squeeze a fresh orange on it etc no because it will sting , but you would put milk, porridge etc on it the same for our bladder regards what we eat and drink.
I have also stopped eating any of the low fat items, especially spreads as they are one chemical away from plastic and full of sugar, back to good old butter, as butter doesn't come under dairy can't remember why.
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Maryjane - very interesting post. My burning urethra has been helped by local oestrogen - I'm really worried they are going to, one day, say I have to stop using it. I was interested by the comment about the pain starting after the middle of the day because of nerves firing off - that makes a lot of sense and would explain why things are less painful at night as well.
I've never had a urine test that has come back showing any kind of infection, only blood. The urologist said I probably had scar tissue in my urethra which is causing the bleeding and pain (the cystoscopy showed a healthy bladder wall) - he told me to come back if the local oestrogen didn't help. While I was on systemic HRT the burning was only sporadic and not as bad as when I first came off HRT last autumn.
I had a premature meno (from mid 30s) and I think I was on too low a dose of oestrogen to keep may bladder etc. healthy - my burning started when I was about 43 when I must have gone into post meno and I was only using one pump of oestrogen per day.
I have tried changing my diet - leaving out all the usually suspects - the only things that seem to irritate are citrus so I continue to avoid these and allow myself only the occasional cup of tea as a treat. I work for a brewery and strangely beer doesn't seem to irritate - though I only drink an occasional slurp now and again. Unfortunately alcohol gives me a headache now I'm off HRT. Menopause doesn't half spoil all the fun!! :'(
DG x
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:hug: Maryjane
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Just returned from my doctors as the burning was horrendous today. :'( Saw our practice nurse who is extremely knowledgeable and she has prescribed a cream called Timetodine, apparently it is an anaesthetic, barrier and steroid cream all in one. Have only used it once, so I will let you know how I get on with it. Burns a little at first, but I think anything used in our delicate area burns. She did say that our conditions are extremely common and definitely made worse by sitting all day. Love coming home and sitting in a salt bath, very soothing. Hope we can all get sorted very soon. :)
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Hattie, MJ and anyone else that may be interested I see that our previous thread has now been renamed pelvic pain.
Midnight Shadow, I too would be interested in knowing the name of the amazing physio who helped you.
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Me to re physio, I believe you live in London ? I know of two with very good names there I go to one of them. Off to London again tomorrow to Uro/gynae.
I was out walking across the fields this am, really fast walk hour and a half got myself sweating and puffing, no aches and pains worth noting elsewhere in my body and I still find it almost unbelievable that I am broken due to my vagina.
I work for myself and had a client come and see me tonight, saying I can't sit because of my back if I told them the truth I think they would run for the hills. ;D
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Hi Moonlight I will ask about that cream, it's sounds very similar to what I was given " trimovate" which is a 3xcombination like yours, I had to stop using it as made the burn worse and the dermo I saw told me it is off license for the vulva area so just check, one of the ingredients in mine was just to strong for that area.
I don't suffer as bad as you and J57 because I don't sit for along time, probably no more than thirty mins, but I can sit up to two hours if I sit in perfect posture and do not slouch.
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My new cream should have said Timodine. Sorry about that. :)
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Midnight Shadow
i've had Timodine in the past for thrush as it contains nystatin.
Quite like your other name for it ;D as isn't it a cream that you store in the fridge ?
Hattie X
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I've got a bit of a low grade virus at the moment - feeling achy and really tired - so I lay down on the sofa for half an hour this afternoon and the burning was definitely better. I also find my urethra burns far less in the evening after I have had my dinner - I'm wondering if low blood sugar has something to do with things?!!!
I think sitting in a supportive chair that encourages good posture does reduce the burning. I have a very old Lloyd Loom chair (falling to pieces unfortunately) that I find so comfortable and the wicker allows some air circulation to the nether regions. My husband has a bad back and he finds that chair very supportive as well.
DG x
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Midnight Shadow
Please could i ask you again for the name of the physio you saw last year who cleared your pudendal neuralgia.
Could you just please post back here on this thread if you are able to and i will send a personal message to you with my email.
Thank you if you can :thankyou:
These physios are like golddust and most of us have to travel a distance to see one.
Hattie X
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Regarding my physio Hattie, do you live anywhere near Grantham Lincolnshire?
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Midnight Shadow
Unfortunately not but two other ladies are interested on here if you are still willing to let me have a name.
Many UK people are looking on the Hope forum (which is mainly USA) as well for a physio who is capable of helping PN.
I apologise for jumping on you with this when you are just a new member to the forum :)
Hattie X
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No problem Hattie. No I didn't have internal physio for my Pudendal Neuralgia. It was just a gentle massage on the pubic bone area. I didn't have any burning at that time just a toothache like pain. My treatment then was really posture based. It was completely different to what I am currently suffering. Having had the Trimodine cream for 2 days and used it as instructed 3 times daily I have been slightly better, not burning as much. Only hope it continues. I visit my physio on Monday, so will let you know how I get on and what she says about the possible burning being related to Pudendal Neuralgia. ::)
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Oh :thankyou:
I will send you a personal message in a minute with my email - it should show at the top of this sceen that you have a message.
Glad that the timodine is helping and i would be interested to know what your physio thinks.
Hattie X
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Please post back after your physio on Monday Midnight Shadow, I am very interested to hear what she thinks. My partner lives very close to Grantham so I would certainly be willing to make the trip up North, still searching for that miracle cure.......
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Sorry I have been a long time replying, it has been a very busy week at work. Went to physios last Monday. Not Pudendal Neuralgia, which I was very pleased about. Would apparently have pain extending all over feminine area and into my bottom end which it is not. She was very understanding but agrees with my Doctor that it is all Menopausal and VA. Physio agreed sitting certainly aggravates it, so will try standing when ever possible. Not so easy when you are hearing children read nearly all day. Continued using my Timodine cream for a week which helped and am trying Vagifem twice a week as advised. Had two and a half really good days at work Wednesday, Thursday and Friday. Not so good today, so used cream again. Suppose like other people suffering it is something I will have to live with. Now trying Epsom salt baths, nice and relaxing and very soothing on the skin. Will keep you posted if I find a miracle cure.
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My burning has been a bit better for the last couple of days. I'm using the Estring which has been quite good at keeping the burning away. I found that the burning returned about 2-3 weeks towards the end of the last Estring's life. I've had the new Estring in for about 3 weeks now and I'm assuming the last one ran out of oestrogen and it's taken 2-3 weeks into the new one for things to get better again. Not sure what I should do about this apart from ask for a new one earlier or maybe try using some Vagifem(I still have some left) when I think the ring is running out of oestrogen!!!
I am considering going back of full HRT - perhaps a very low dose - to see whether together with the local oestrogen this will keep me comfortable.
DG x
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Just ordered some vitamin e suppositories from amazon as they have very good reviews for VA. Will try them alongside my vagifem on the days I don't use vagifem. Remember my doctor recommending vitamin e. Will let you know how I get on with them. Fingers crossed?
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I tried using Vitamin E capsules vaginally before going to bed. Not sure it helped particularly but it certainly didn't do any harm - was very lubricating and soothing.
Keep us posted. DG x
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Can I join you all in misery? Just been through a two week period with soreness and now continuing soreness, despite Estring (suspect like Dancinggirl I should have changed it earlier - am three weeks into new one). Like most of you sitting makes it worse, but last night I got quite bad pain which started in the middle of the night in bed. Doesn't help that I seem to get prickly and sweaty round that general area in bed at the moment which keeps me awake for hours. Can't seem to find any way of switching that off - even tried a cold wet flannel last night. Sigh.
Sore now. Working. Double sigh.
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Hi ancient runner
I have heard from someone that the Estring sometimes needs to be changed earlier.
Are you using any HRT yet? It sounds as though you may be needing it now if you are getting that prickly creeping sensation at night and struggling to sleep - that's exactly what I get. I'm seriously considering going back on HRT to see if the combination of a very low dose of HRT with the Estring keeps things more stable. My GP muttered that I could only use the Estring for 2 years - I assume because they still worry about the womb lining building up, so maybe I would need to have the occasional course of progesterone to make sure the lining is thin???!!
3 weeks into my new Estring I'm feeling much more comfortable but I got really hot gardening yesterday and then had a drive in the car and was burning a bit afterwards.
I just don't think any local oestrogen is enough on it's own for women like me. At 58 and having had a premature meno, my bladder and atrophy issues are too far gone. DG x
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Good evening Ladies. Hi to all those from the pelvic pain thread! Midnight Shadow, just read your thread, and although I have Vulvadynia, it is not a burning sensation, as much as an irritation going right up inside to the cervix, and if you have read my very long winded posts about pelvic pain, spasms and IBS, you will know that, along with a number of other members, we are seeking the Holy Grail of Pelvic Floor Relief! I am now beginning to think I have a form of Pudendal Neuropathy, as I am now having weakness in the left arm and shoulder, and twitching muscles. My Gynae consultant thinks I should now see a Neurosurgeon, but I note that you say you saw a physio who helped you, where was that help? I have a Chiropractor who is understanding the link with all my pain, but I think is unsure how to treat it!
It is not always just pain, but a range of "weirdness" - weakness in odd areas, digestive disruption, weird head, and fatigue. I have had bloods done, and all is fine, so I was interested in your physio!
Many thanks.
WANDERER XXX
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Hello Dancing girl
I fear you might be right - or it might just be that my Estring ran out of steam before I replaced it and thanks to a two week period then it's just taking a bit of time to get everything back to normal. Hoping so anyway. Sigh. Be interested to see what you do next. xxx
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I was given Epaderm OINTMENT (not cream) by my GP which I use for soreness and also mix with water to use as a shower gel. It doesn't irritate me at all unlike other products. I also find an gel cool or ice pack wrapped in a flannel is a great relief when things get sore.