Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Eviepf on June 18, 2017, 07:21:08 PM
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I've posted a couple of times about VA, which in my case manifests itself as horrible urethral stinging and burning, accompanied intermittently by repeatedly needing to pee (or at least, feeling like I need to pee).
I've been on Vagifem 7 days per week for 3 months now, which hasn't helped the urethral symptoms (although it does seem to have sorted the horrible watery discharge which I'd been having). Gynae started me on Estradot patches 4 weeks ago - 37.5, just increased to 50.
I know some people need both systemic and topical HRT to help with this and it's early days with the Estradot, but I'm in agony and feeling pretty desperate. Can anyone reassure me that things might improve? Thanks x
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Could it be that the Vagifem isn't enough, have you tried putting 2 in on alternate nights, also some ladies use a cream on the outer lips to keep those moist too.
I find Ovestin works for me. It really is trial and error >:(
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Thanks CLKD. I haven't tried using any more than 1 Vagifem a night. It's a thought. I've just got to the point where I'm convinced that nothing is going to work, as surely Vagifem every night for 3 months would have helped.
I'm uncertain about it all as I've never really suffered from obvious vaginal dryness. It was there, I think, and obviously I was low in estrogen (watery discharge, really thinning pubic hair) but I never had the soreness and vaginal burning that some other people do, it's the urethral/bladder issues that are my problem.
I asked the gynae if there was anything I could apply externally and she said not..... Would Ovestin be more for vaginal issues rather than urethral, maybe?
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They are designed to do the same job ......... how about trying 2 at night for the next 3 nights and see if the bladder is eased any?
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Hi Evie,
I have struggled for almost a year with urethral/bladder atrophy on top of the vaginal dryness. I was put on Vagifem as well, but it didn't even touch the issues. Vagifem was just not strong enough. My GYN gave me Premarin vaginal cream .625 gm. for two weeks inserted daily then twice weekly. It is applied the same way as a tampon is inserted but with a syringe. It is working good for me. Might be worth a try.
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Evie - you probably have interstial cystitus - which a general term for an overactive bladder and uti type symptoms.
It would be worth seeing a urologist to check the bladder etc
I've suffered with type of burning on and off for years. Im afraid the fillers in the oestrogen creams can burn like crazy and I would suggest you try using Vagifem every other day or once every 3 days to see if the fillers in the Vagifem pessaries are irritating things.
I would definitely try using some Multi Gyn Actigel to help restore the flora balance in the vagina. Use SYLK or YES vaginal Moisturisers as well.
Finally, have you tried changing your diet a bit e.g. Avoid cows milk and drink soya or oak milk instead? Do Avoid caffeine completely and no acidic drinks like cranberry or orange juice.
Half a teaspoon of bicarbonate of soda in a glass of water morning and evening also works well for me when the burning starts. DG x
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Eviepf - If you are already using 5 x vagifem per week then have you thought of using the Estring? This contains less than 7 Vagifem in total but is supposed to deliver about 50 mcg per week. As it is in a ring it may well be better for you and without having to be forever putting something into the vagina and all the fillers too. Just a thought. I haven't used it but there are other women on here who do. Also I would not increase beyond what you are doing for long without further discussion with your specialist - although the current dose is much less than the old 25 mcg dose which itself had a loading period of 2 weeks.
I presume you have a Mirena coil or no uterus if you have been given oestrogen only patches? If the former - I'm not sure how this would work with an Estring and I don't think there is anyone on here who has both? It doesn't mention anything about this in the product information for Estring.
Hurdity x
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I have intertitial cystitis as well and I had the exact same symptoms when it started in 2013. I was in horrible pain. Its an inflammation of the urinary system from unknow cause (hormonal imbalanced can trigger the desease). I agree that you should see an urologist. There are very good treatment for this. I was putted on Elavil 25 mg and only after a month, I was feeling 90% better. I sometimes have some minor symptoms but it never last. Hang on, I know how painful this can be.
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Thank you everyone for your replies and good wishes - I really appreciate it.
I'm just so frustrated and low about all this. I was diagnosed with IC/PBS a couple of years ago and had a cystoscopy. Bladder looked normal. I was despondent because the urologist/my GP could offer no explanation as to why this had happened, nor any treatment other than 'papering over the cracks'. I wanted to know what the cause was and hence a 'cure' if possible. I eventually discovered there is a school of thought which says IC is caused by chronic infection, which made sense to me because my issues had started following what seemed to be a bad UTI. I took antibiotics long-term, high-dose, for around 18 months but was unsure whether this had any beneficial effect. I don't discount the infection explanation - maybe the most likely explanation, for me at least, is that it isn't down to one cause.
I also found out that menopause can cause urinary and bladder symptoms and read reports on menopause websites and forums, written by women who seemed to be suffering exactly the same symptoms as me. My symptoms started when I was aged 54 and perimenopausal, so I decided to try the hormonal approach, hence going to see the gynae in Spring this year, which brings me to where I am now. I suppose I'm really hoping that the addition of systemic HRT will help, even though the Vagifem hasn't, at least not with my main issue, which is the burning.
I avoid foods/drink likely to cause bladder irritation, although don't actually think that what I eat or drink affects my symptoms - I know that it does, for a lot of people. I tried Estring but ended up with an acute UTI, so had to give up on it and am reluctant to try it again. I do use bicarb but am a bit worried about having to use it all the time.
Julation - thank you for the info about Elavil and I'm glad it's helping you so much. It's known as amitriptyline in the UK and I've considered asking my GP for it but had bad experiences with the side effects of this type of antidepressant in the past (was prescribed tricyclics decades ago, for PND) so have been scared to use it. I know that the dose for nerve pain is much lower than prescribed for depression, so perhaps I just need to give it a go.
Does anyone think there is still a chance that the systemic HRT might be the 'magic bullet' I'm looking for, though?!
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Eviepf, it is amitriptyline in Canada too. If you are in pain and really need to start taking it again, here is the recipe I was told to do by the American IC forum:
You cut the 25 mg in 4 pieces and you start with 6.25 mg for a week, you increase to 12.5 mg for two weeks, to 18.75 mg for a week and good to go with 25 mg. And you don't take it at night, you take it around 6 PM (with your meal) to avoid major side effects in the morning.
For me it worked so well on pain that I did not care about side effects. I just wanted that fire to stop. And my cysto was normal as well. Some of us have IC in urethra only but its the same desease.
As for yout diet, you do absolutely great. Its exactly what they recommend. But I think you need extra help. I know there is another drug out there which is a long lasting antihistaminic and its supposed to be effective as well. I remember taking Benadryl and getting some relief. But Elavil was a life saver. I only take 5-10 mg at night after 4 years and it still helps a lot.
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Just wanted to send you :foryou:Evie. I posted last week with similar problem. I am currently on day 6 of a reloading of Vagifem after 3+ years of being fine with just the maintenance dose. For me I am exactly the same as you in that the burning is the worst symptom plus the feeling I need to wee/pressure in the bladder. It is truly horrible I know. I am a little better today and have an appointment with the doctor for next week where I'm going to ask for some Ovestin or similar cream to use externally to see if that calms things down. At the moment I am trying Vagisan Moist which seems not too bad. Truly hope you get some relief soon.
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I've had very similar. I used the Estring alone for probably2 years with occasional Vagifem 14-night reloads. Along the way I discovered at one point that I had thrush and once that was treated, the burning went - no other usual symptoms, it was picked up via a swab. Might be worth treating yourself for that.
In Jan I started using systemic HRT but the GP at the time was VERY anti me using any local HRT so I suffered for two and a half months, using the occasional vagifem. I went back to a different GP - started using the Estring again which helped, but have now gone up to the more powerful systemic HRT and doing much better. So am currently on Estring and Femoston 2/10 with occasional estriol cream outside (which I think travels up the urethra a bit and helps).
Sorry - written an essay - but hope it helps.
One final thought is that I think vagifem can be very irritating and the Estring is better.
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Eviepf
I'm new to this forum and new to VA / OAB as of Dec 16. I literally begged my Urologist to take out my bladder at one point and my gynaecologist failing all his efforts thought a hysterectomy may be the only answer. I did neither and instead read every medical journal/studies on VA and was convinced that lack or estrogen was the problem!
Trying to convince my gynaecologist that Femoston 1/10 and later 2/10 plus Vagifem was not working was unbelievably difficult, he made he feel that I was being overly dramatic!!
I knew I had to get a more direct hit of estrogen in higher numbers than Vagifem so convinced him to prescribe Estrogel plus Ovestin plus Estriol Cream and Utrogestan 100mg for only 7 days.
I now use 5 pumps of Estrogel daily (in stages throughout the day) - all below the belly button, I make sure that I rub some in directly over where my bladder is. I alternated Ovestin and Estriol cream nightly both internally. This regime gave me almost immediate relief.
I know some may feel that this is a large amount of Estrogen 'but' having started with one pump it was only at 5 that I relieved all my bladder/ureathal pain/urgency.
You are not alone!!! So keep strong - you will find a solution!!
Vagifem irritated me so badly, I didn't realise this until I stop using it. I much prefer Ovestin and Eatriol cream - they are quite soothing if you keep them in the fridge.
Are you keeping a diary of good and bad days? This helped me focus on what was working and what wasn't.
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I remember reading an article by Annie Evans (women's health expert) and it said that VA can cause a watery discharge.
You can find it here https://menopausematters.co.uk/pdf/After%20the%20Menopause%20April%202012.pdf
Hope this helps. Maybe other ladies could say if their VA causes any sort of discharge as this could also be helpful.
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Watery discharge was definitely one of my early problems, post surgery. Dripping would be a better description. Doctor said 'our discharge does change from time to time ::)' Eventually it got really bad, went pink and I was back to my post-operative state with sitting. :(
It went with antibiotics, and then with diflucan, more diflucan and again with antibiotic cream, then for good with vagifem and the doctor who said 'anything goes with menopause' and was the first to recognise the problem :)
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I find taking 1/2 Nurofen B4 bed-time can ease the need to pee through the night.
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Hello all. Thank you so much for your replies and information and sorry it's taken me a few days to respond - computer has been playing up and I get quite confused when trying to reply using my tablet! So many helpful suggestions, which I have taken on board.
re thrush - Thank you ancient runner. I had a diflucan capsule in the cupboard which I bought months ago and never used. I took it on Monday night - no improvement for a few days but since yesterday my symptoms are definitely somewhat better, so I do think that thrush was at least making matters worse. I'll keep my eye on that and now intend to use Multigyn Actigel regularly.
Amitriptyline - I am seeing my GP soon and intend to ask her about this and hopefully get a prescription. As you say Julation, I just want the burning to stop at this point and thank you for your suggestion about increasing the dose gradually.
nicolcarrie - I'm glad you're feeling better with the higher dosage of HRT. What you say does give me hope that the patches I'm using might eventually do the trick, if I can just get to the right level of estrogen. I don't know what the patch equivalent of 5 pumps of Estrogel is but I think I'm on a low to medium dose at present (just gone up to a 50 mcg patch). Will speak to the gynae if things don't improve and see if she thinks I can increase. I don't think the Vagifem is irritating me - I think I would have noticed when I started using it (but it's so hard to separate out symptoms, so who really knows)!?
Meadowblue - it is miserable indeed and I hope you're feeling a bit better now. It must be very demoralising to have had good results for so long and to then slip back, but at least you know that relief is possible and I'm sure you'll get back to where you were.
dahliagirl - yes - the discharge! The gynae described it in her report to my GP as 'profuse'. Dripping is definitely a better description.... At least the Vagifem seems to have stopped that.
Thanks to CLKD for the Nurofen suggestion - have been using ibuprofen as necessary and occasionally (if I'm feeling particularly daring) Co-codamol! And thanks too to Machair for the useful link.
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Eviepf, I woke up from a pelvic surgery at 38 with the burning, and the urgency. They immediately diagnosed me with IC and I went down that road for a couple years. The IC meds and the diet had no effect on me. When it's bad, it can make you feel so desperate, I know.
What emerged later was that I was in perimenopause at 38. I have one ovary left, and that had "failed" by the time I was 39 or so. So I also then started thinking that maybe my discomfort was VA. Systemic HRT and local estrogen eventually stabilized me so that my flare ups were few and far between.
Another thing that helped was pelvic floor physicial therapy. I am in the US, I'm not sure if you have access to PT where you are. It's definitely something to try if you do.
I took an HRT break and mucked around with my doses from Jan 1 to mid-march of this year, and it caused a terrible flare up. I was burning for about a month. I got my patch dose back up and am taking local estrogen nightly. And this week my pain finally relented! It's back today, but the relief gave me hope.
In my experience over the last 4 years dealing with this, hormone adjustments can take maddeningly long to affect things. When stopping and starting HRT, I often experience a delay in things getting better or worse, which of course makes them hard to track. Please hang in there. I think systemic HRT is a great thing to try, but give it time. Which can be so hard when you're miserable, I know.
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Thank you hoping. It sounds like there is a lot of similarity between your experience and mine (IC/PBS diagnosis, then realisation about the hormonal connection). It must have been very shocking to wake up from surgery to find yourself suffering with an immediate problem like that.
I'm sorry to hear you're having a blip at the moment and hope things will settle down soon for you. It does seem that it can take quite a few months for HRT to have a beneficial effect on the burning/frequency - I think I just need to be patient. As you say, it is hard when the symptoms are so relentless.....
I've heard good things about pelvic floor therapy and have thought about it as a possibility. It's definitely available here, but I don't know if I could access it on the NHS - I'm sure some other UK posters will have info about this. Failing that, I guess I need to go private - I think I need to read up some more and maybe start another thread.
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I have women's health physio.
It is available on the NHS however only for a short time and TBH the private ones are far more knowledgeable regards pelvic pain , as the NHS ones are more geared towards incontenance mainly , and when you suffer from pelvic pain the last thing you want to do are pelvic floor exercises as this just tightens and already tight pelvic floor , it is also a whole body physio the private sector use not just he vagina.