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[Eviepf]

Good morning all

Before I continue, I know I shouldn't have to buy oestrogen cream online, but this honestly seems like the most stress-free option.

Because of VA, which in my case seems to have caused urethral soreness more than anything, I'm using Vagifem daily and am also on low dose systemic HRT (oestrogen only as no womb). Although I think this has helped a bit (after 6 months) I still have urethral soreness and burning, which is occasionally pretty dreadful. I'd like to at least try applying something directly to the urethral area but the gynae I saw privately a couple of times this year, who started me on Vagifem/HRT, told me she didn't think it would help and that the other ingredients of the cream might just cause more irritation. I know this may be the case but would still like to try it. I don't think the Gynae feels she has anything more to offer me and has suggested no further follow-up appointments. Going by previous conversations, I think that trying to get this out of my GP would be a fruitless task.

Can anyone give me their opinion on whether this is worth a go and, if so, suggest reputable sites/the best product to try?

Thanks in advance.

[Dancinggirl]

I assume you have had investigations of your bladder?
I doubt you can get the proper vaginal oestrogen cream online without a prescription.
If burning and soreness of the urethra is your issue, then more oestrogen may not necessarily help.
I have had this burning on and off for many years.  I had investigations and told is was interstitial cystitis - which basically means ‘they don't know what it is' - however, recent studies have shown this type of burning could be a deep seated infection so it could be worth seeing a urologist. I was simply told to keep using the Vagifem.
My other strategies that seem to help:
No caffeine or acidic drinks
Avoid spicy and acidic foods.
Drink lots of water.
When burning starts I drink some water with bicarb of soda morning and evening.
Gentle on my ‘lady bits' - special vaginal wash, cotton underwear and no tight clothing.
Vaginal moisturiser daily - I use Sylk every day and also some Multi Gyn Actigel if i‘m feeling itchy or sore. My theory is that if the flora balance if off in my vagina, then this will cause irritation of the urethra.
I use Vagifem every 3 days and sometimes more often. I did find the oestrogen cream burned like crazy.
I've stopped milk and use Soya milk instead.
Try not to sit for too long - get out for lots of brisk walks to get the air around your ‘bits' and the circulation going.
DG x

[Kkay]

Hi there,

I was actually looking for an old post of yours earlier this morning, in order to ask you how you were doing...I have very similar issues to yours. Urethral burning and stinging..in the past I've used the exact words I found you had used as well "It feels like pincers"...It's completely miserable.

I saw a vulvar specialist earlier this year in the US and she said and I quote : "Vagifem won't do anything for the outside bits, for those you will need a cream". She prescribed Estrace and I am trying that and Estriol as well, to see which is better. Many women here are comfortable with Ovestin I understand. I think Estriol does help and I find it doesn't burn me. If you were in the US you could get a compounded cream with no ingredients that would burn. I suppose that is not possible in the UK? If I were you I would ask on this site for the name of a sympathetic gyne who will prescribe a cream, I don't understand why yours doesn't.

What happens when you increase your systemic HRT? Is it an oral delivery or through the skin ? Maybe you have tried that already, in my case increasing my dose helps my bladder and other bits immediately.   

I have found that Estrogel does a better of delivering estrogen to the urinary/vaginal/bladder tissues, much better than oral HRTs do. 

Another thing you can consider is the laser procedure that others have mentioned on the site - Maryjane has shared her experiences with it, she's had 5 sessions now I think.  In the UK it is called the Mona Lisa Touch; in Europe there is a less intense laser which is called Renovalase. The latter is now very widely used in Italy and Spain. The interesting thing is that the procedure is being taken up in the US by urologists and urogynecologists and not just gynecologists, clearly indicating that urologists see how it benefits the urethra and bladder and improves or gets rid of the urinary symptoms of low estrogen.

I hope this is a bit helpful. Let me know how you get on.

[Hurdity]

I use systemic HRT, Vagifem and estriol cream (generic 0.01%) - all from my local GP on NHS. If you feel you want to try this then your doc should prescribe - there is no reason not to, and they can't argue that you would need a progestogen as you've had a hysterectomy. After all if it doesn't work you will have given it your best shot. There is also the Estring which delivers a higher dose of estradiol directly to the vaginal tissues without the need for fillers, and possible irritation from daily vagifem/insertion,  as it is a physical ring containing the hormones. A few members have tried this.

Hurdity x

[Annie0710]

I can recommend this clinic online

http://www.onlineclinicuk.ltd.uk/?gclid=Cj0KCQjwsNfOBRCWARIsAGITapZXmk1_ZUEuFXsibtJzCpmfLMkuoGF6fISKBzgP91cmTkQ0aemnPRIaAoASEALw_wcB


I used it when I wanted to try oestrogel.  You have to answer questions and you can allow them to contact to your gp (I did this and oestrogel then appeared on my NHS repeats)

I needed help along with vagifem and ovestin was great.  It got to be a palava with oestrogen and test gels plus vagifem and ovestin cream so I upped my vagifem to 5-7 weekly and now rarely need the ovestin

You're not being irresponsible by looking online at reputable dispensers and they don't give you an answer straight away and may contact you for further info before prescribing

I still use them sometimes when I want oestrogel as opposed to Drs oestrodose

[Eviepf]

Thank you all so much for replying. I just composed a long post but managed to delete it when attempting to preview it, so will try again!

Dancinggirl - sorry you have been suffering in this way for so long. I've seen urologists and also been diagnosed with IC/Painful Bladder Syndrome although, after a cystoscopy, my bladder looked normal. I use the usual 'flare management' techniques and avoid trigger foods etc, but am just so sick of the (often useless) attempts to try to damp down the symptoms.

I always felt that some infection might be involved, as this all started after an acute urine infection which never really went away. I've taken long-term, high-dose antibiotics but found these to be of limited help, while also causing side effects and thrush. I decided to see the gynae to discuss the hormonal aspect to all of this, having found the MM website and been amazed at the other women suffering similar symptoms (I was amazed to learn that VA didn't just involve the vagina, for example). It was also an eye-opener when I met the gynae to hear that she had treated so many women in similar circumstances.

Kkay - I think I remember your previous posts about this, and thank you for thinking about me! Interesting to hear that your vulvar specialist told you that a cream would be needed, which is pretty much what I was thinking. It's not possible to get compounded creams in the UK, I don't think. How long have you been using the creams, and have you noticed any good results? I did try to increase my systemic HRT by moving to a higher dosage patch, but had no beneficial effect after a couple of months and was suffering such bad breast pain (not just discomfort, actual stabbing pain) that I reverted to the lower dose. I've been thinking about the Mona Lisa Touch and have read differing anecdotal reports on whether or not it could help urethral/bladder symptoms, so interesting to hear that urologists and urogynaes in the US are taking it up. I know who did Maryjane's treatment, so perhaps I need to bite the bullet and make an appointment to discuss it with her.

Hurdity - I did try the Estring but didn't get on with it - it kept falling out (not sure what this says about my insides)! You are quite right that I should see my GP. It's just that their attitude seems not to be very pro-HRT and, as I'm already on topical and systemic oestrogen.... I think I will be brave and go to see them, though.

Annie0710 - this is very helpful. I will try the GP first but reserve the right to look online if I need to.

Thanks once again. I will report back! x

[Mary G]

Eviepf, I was plagued with constant vaginal burning and itching when I had a Mirena coil (not relevant to your case I know) without adequate levels of oestrogen.  I have since had the coil removed and now take the right dose of oestrogen and now I never get any itching or burning. 

This is a long shot but have you considered using Oestrogel on your inner, upper thighs?  I used to get some mild discomfort in that area but since apply one pumps of gel to that area every day, I never get any problems there now.  It might be worth a try.

[Kkay]

Hi again,

All of this is very good advice and I agree with Mary G that using Estrogel on the thighs helps - I realise you are on a patch. Where I apply the Estrogel definitely makes a difference to my urinary symptoms.

Annie, that is so useful re that pharmacy that has Estrogel. I've long noticed that Oestrodose does not work for me as well as Estrogel and am frustrated to learn that its no longer easily available.

Eviepf, a doctor friend of mine attended a conference on vulvo-vaginal atrophy and vaginal lasers and taped the presentation of a gynecology professor at from Pisa, Italy, which I have. I found two statements particularly relevant to my (and your) situation:

1. The label "Vulvo-vaginal atrophy" is  being replaced by the more accurate "Genito-Urinary Syndrome of Menopause" or GSM. I think that tells you right there that the bladder and the urethra are very affected by the menopause. Most urologists don't understand how hormones work, don't ask me why, its a mystery.

2. A statement this professor makes early in his talk where he says that the urethra and bladder are lined with estrogen receptors and therefore when the practitioner sees as signs of atrophy in the vagina, they should expect these changes in the urethra and bladder as well.

I can try to send it to you as a private message if you are interested.

Estriol does not burn me and I am finding it quite helpful. It started helping right away. I was told to use it every other night on the outside and inside the lower third of the vagina but at the moment I am using it every day just outside and waiting to see what that does. 

I also ordered Saginil gel from Italy that helps with nerve pain in that are. That seems to be working too.

I agree with Hurdity that you should definitely try the cream. Print out the guidelines that are pinned here and take them with you to your reluctant and ill-informed GP !

Good luck and let us know how you get on.

[Eviepf]

Thank you MaryG and Kkay

I've made an appointment to see a GP on Tuesday and am cautiously hopeful. The GP I'm seeing is not the one I normally see (good!) but have seen this one a couple of times in the past about different issues. She is very much in demand, but only works part-time and I'd pretty much given up hope of ever managing to see her again. I've never spoken to her about hormonal stuff, but she seems open-minded about other things, so I'm going to ask her about the cream and, now, also about Estrogel instead of patches.  It's really interesting that you both feel that where the oestrogen is applied could make a difference - I would never in a million years have thought of that.

Saginil gel - have had a quick look and it seems that it's available via Amazon. I will investigate further!

Kkay - I'm glad to know that estriol cream seems to be helping you. I would be very interested to have that info via PM, if possible.

[Eviepf]

Good morning all

I'm reporting back after my visit to the GP yesterday. GP was great (wish I could see her every time I go...). Very happy to prescribe estriol cream and also to think about the possibility of applying systemic HRT to the inner thigh (I asked about changing to a gel, rather than patches). She was uncertain about the dosage if I wanted to go down that route, having only ever prescribed patches and said she'd have to do some research. I then had what I hope is a brilliant idea (!) and asked her if I could just try applying my existing patches to that area instead of on my lower abdomen, as I've done before. She said she thinks that's worth a try, so I'll do that and see how things go.

My mind went blank when she asked me if I wanted 0.1% or 0.01% estrogen cream, so she suggested I try Ovestin, the stronger option. I was worried about this when I got home and cheked on here and read that Ovestin has caused discomfort in so many people, but thought I'd give it a try. I applied a small smear last night and thankfully had no burning at all, so will continue to do this daily and see what happens.

Thank you again to everyone who replied to my original post (and to Kkay for sending me more info by PM). I'm glad I followed your suggestions to visit the GP again. I don't know whether the Ovestin will help at all, but I'm glad to be giving it a try. x

[Hurdity]

Thanks for the update Eviepf and so pleased you had a positive consultation with your GP. Good for the NHS eh?! Are you able to choose this doctor again when you make another appointment - I can choose who I see at my local surgery?

I do hope it all works out for you and be sure to let us know

Hurdity x

[Eviepf]

Hi All

Hurdity - Good for the NHS, indeed! I CAN choose which GP I want to see, but the problem is that the one I saw yesterday is so much in demand that it's virtually impossible to make an appointment with her. The same applies to my 'second favourite' GP - obviously all the surgery's other patients feel the same as me.

It turns out that my idea of applying patches to my inner thigh was not such a good one. I clearly underestimated the flabbiness of my thighs and found that the patch had fallen off (friction of walking, I think). I tried a Heath Robinson solution involving plasters, but that didn't work either and I had to admit defeat. I now have so much black sticky gunk on my leg from patch and plasters that I think I'll need a whole bottle of baby oil to remove it.... It might have worked if I'd been able to use Estradot, but they are like hen's teeth to get hold of and Elleste Solo are much larger and seem less sticky.

I think I need to contact the GP and say that I'd like to try gel after all. Can any of you knowledgeable ladies tell me about the dosage equivalent (or point me towards a good link)? As I said, my GP had no idea. I had a quick look yesterday and think that one pump of the Estrogel generic alternative seemed to be about the same as a 50 mcg patch, but am not sure I got that right.

Thankyou!
x

[Dancinggirl]

Eviepf - the amount fo gel you use can be variable depending on how much you personally need.  Because it is applied daily, it maintains a consistent dose as well, which for some women is a bonus. 2 pumps per day is the standard dose so if you using a 50mg patch that would probably be the right dosage.  The GP can simply look at this sight to get the info she needs - MM has been set up and is run by an NHS gynaecologist and is a linked from the NHS Choices website. DG x

[Annie0710]

I'm on 2.5 pumps a day and would consider that dose nearer to 50mcg than 75mcg (I'm not great on high doses of oestrogen x

[Eviepf]

Thanks Dancinggirl and Annie0710 - I'm on a lower dose of patch (currently 40 mcg) so wonder if something like 1.5 pumps might be the answer. If whatever I started with was too high, I'm sure I'd notice quite quickly as the awful breast pain would probably return. I might pass this over to the GP and ask her to have a look...