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[Jules]

I left the forum and for a couple of reasons don't want to start using it again.  One being that I've been less anxious by not reading about health problems that may never be relevant to me. But I wanted to give a spot of optimism to those affected by vaginal and vulval atrophy and UTIs. I used the experience and advice of someone on here and started treatment with local estrogen. I was already using vagifem but only twice weekly so I increased it to alternate nights and started applying estriol cream externally mixed with Yes moisturiser daily. After 14 months I'm comfortable.  I dont get UTIs or the discomfort around my urethra. I've had GP checks recently and there were no concerns. My message is not to delay. If I'd started earlier it wouldn't have got so bad, and the vulval atrophy happened quickly. It's been trial and error. I've never been on systemic HRT but the localised estrogen caused breast pain and I've had two episodes of spotting and a small bleed over the last 4 years. I've just been advised to reduce the frequency to avoid another bleed. But it's worth fiddling around because this condition doesn't go. Moisturisers and antibiotics will not reverse it. I was prescribed estriol 6 years ago by a gyny- urinary bloke because of my repeated UTIs but wouldn't use it after reading side effects. I really regret it. I wish my GPs had told me about estriol cream for external use instead of leaving me to waste away. But they had the attitude that I was in my 60s and what did I expect. You don't have to put up with it. You do have to be patient and persistent. Find your routine and stick to it. I've now added nadaya victory oil to my external moisturising routine which has stopped the night itching. It's all a faff, and I know there will be flare ups but it better than 14 months ago. Good luck and don't put off your treatment.

[Ayesha]

That's great news, Jules. Thanks so much for the update, it will help so many who are at the very beginning of this awful condition.

[bombsh3ll]

Thank you for sharing your experience, I am sure it will help many others.

The leaflet accompanying vaginal estrogen really does need to be revised as it is medically inaccurate and scaring people off treatment.

As there is negligible systemic absorption of vaginal estrogen, it shouldn't cause bleeding and therefore any bleeding should be investigated as per local guidelines.

I would caution against reducing or altering a VA regime that is working for you on the basis of bleeding or spotting - untreated or suboptimally treated VA can in itself lead to bleeding, and reducing treatment is likely to result in a return of the UTIs and symptoms that you are trying to prevent.

[Jules]

Thank you for sharing your experience, I am sure it will help many others.

The leaflet accompanying vaginal estrogen really does need to be revised as it is medically inaccurate and scaring people off treatment.

As there is negligible systemic absorption of vaginal estrogen, it shouldn't cause bleeding and therefore any bleeding should be investigated as per local guidelines.

I would caution against reducing or altering a VA regime that is working for you on the basis of bleeding or spotting - untreated or suboptimally treated VA can in itself lead to bleeding, and reducing treatment is likely to result in a return of the UTIs and symptoms that you are trying to prevent.

Unfortunately it does cause side effects with me after around 4 months of increased frequency.  I had the incidents investigated. My GPs told me it can happen and theyve had other patients with the same side effects.  They don't want me to need hysteroscopy again so advise to reduce if I can and increase as required. We are all different and react differently and the extent of our condition is different too so I dont think its possible to say there's negligible absorption in all women.  It's a trial and error thing with treatment.

[fiftyplus]

Good to see you back Jules, I hope you are well xx

Thanks for the update & sharing your experience which is helpful to others 

[Taz2]

Thanks for the update Jules. It is good to hear you are feeling so much more comfortable.

Taz x 

[Kathleen]

Hello Jules

Thank you so much for taking the time to update the forum.

I often wonder how previous members of MM are doing and if they ever found a solution to their problems.

It is good to know that you have a regime that works for you and I'm sure that ladies in a similar position will be grateful to you.

Wishing you well and take care.

K.

[Jules]

Thanks Kathleen.  I'm under no illusion that it's done and dusted. It's an ongoing thing to be controlled and as I age my current regime may not work but I at least feel better than I did last year. I realise it may be more challenging for others whose condition is more extreme. I just wished I'd taken that doctors advice 6 years ago instead of messing around with Replens and antibiotics for UTIs. I just didn't understand the connection and the consequences of lack of estrogen and crucially that it continues deteriorating if left untreated. None of my doctors felt it worth explaining.

[Northerngirl]

So good to hear from you again Jules.
I'm glad you're doing well and thanks for your update which will give many of us ladies hope going forwards with this horrible VA/uti nightmare.
I'm right in the middle of this and am so scared of using anything other than Yes products. I was prescribed ovestin  but daren't use it again....I'd only used it for a few days last December when I had my scare(PMB ,hysteroscopy and biopsy). The ovestin wasn't the reason for the scare but I didn't like it to be honest.... it caused a horrible heavy discharge.

Keep well Jules  :foryou

[Jules]

I remember your experience northern girl. I use pessaries internally rather than cream. I'm also nervous though of triggering side effects after my hysteroscopy so understand how you feel. I'm going to try reducing the vagifem but if symptoms return I will increase. I felt I'd no choice than to use the estrogen. I was wasting away. You have to be comfortable with your decision though.  And as I say, my situation may change. Puberty was a breeze compared to this.

[Vavavoom]

Thank you Jules for your note of optimism, very welcome to hear.

I'm a relative newcomer to this forum and condition, having had a real baptism of fire (no pun intended) over the last 5 months, (PMB, hysteroscopy, biopsy, UTIs, pelvic pain etc) let alone trying to come to terms with this sneaky pernicious condition which no-one prepares us for. I’m so thankful to learn from such a knowledgeable, articulate bunch on this forum, at times I agree it can feed the anxiety, but without the awareness I would still be trying to work out what had hit me, and having to wade through mostly ill informed GP’s, one of whom recently asked ‘what’s GSM? I’ll have to look it up’! There is still a long way to go in many practices unfortunately.

Thankfully, armed with far more info, I’m  starting to move through the shock, anger, denial phase and trying to tackle the symptoms full on, with Vagirux, systemic HRT, Yes Moisturiser and Beeswax based balm from Kegel8. I will bear in mind the Ovestin and if required, ask specifically for it, and then also look into Pelvic Physio as well as the daily attempts to work the pelvic floor (understanding how it all fits together has been a revelation!)

if anyone had suggested to me this time last year that I would be writing about this stuff, in the hope of connecting with and supporting other women I would have never believed them. But here we are.

Wishing everyone in the same boat the hope and strength to keep going with whatever might help them, and some better days x

[Jules]

Vavavoom, I'm really sorry to hear you've not had the information you need. A nurse asked me what vaginal atrophy was. Unfortunately for me, I think my GPs knew, they just didn't view it as important to treat, almost like it was an aging thing to accept. It is a shock, the biggest one for me was the change in appearance,  I wondered what the heck was happening and the GP who examined me still didn't suggest estriol cream (previously ovestin). I have suffered some indignation,  examinations, scans, hysteroscopy, questions about my sex life, having my prescription withheld.   It's very hard battling your way through but once you know what the cause is you can make a plan and address it with confidence and hopefully with patience it will improve.

[AngCho]

I can report the same Jules. Several months of doctors appointments, lots of normal urine and swab tests.

Why didn’t they just say? it took a urologist at the private hospital following my hysteroscopy to suggest VA.

Now pain and discomfort largely under control after 11 weeks of treatment. Following advice from ladies here, Vagifem every other day, small blob of Estriol externally daily, showering with plain water once per day, and trying Cetraben as a general vulval moisturiser. (Other moisturisers - and I’ve tried lots - irritate. YES kindly sent me free samples when I requested them.)

In a few weeks I will try and reduce the doses I am using to keep my GP happy, but for now I am feeling much more positive. Best wishes and thanks to everyone.

[Ayesha]

When I recently asked for a repeat prescription of Estriol cream from my new surgery I received a phone call with a message from the GP saying its very rare to need both Vagifem and Estriol together. I had to hold back my anger, which I am not good at in circumstances like this, and explained that one tube will last me three months and further explained that Vagifem alone does not reach the outside, once I had explained this I was allowed to have the Estriol.

Soon after that I had my review, I went armed with all the up to date information I had on treatment and dosage, I was ready for a fight but what a surprise, I ended up having an amazing conversation with the practice nurse. She asked so many questions of my experience of GSM, we spoke on the same level and from what she said, the reason this condition is not known to many medics is because women don’t talk about it, we are not coming forward in numbers to make this a big issue. I have read a lot of research worldwide and the same has come up each time, women are not coming forward in enough numbers, apparently its still a case of excuses like, its private, its embarrassing, its my business. I’ve read articles about the menopause in France, apparently there it doesn’t exist!
How the heck anyone can live with GSM is beyond me, for me it was impossible and my previous surgery knew nothing about it until I got lucky and saw a GP who is a gynaecologist, her first words were you need oestrogen down there but she never explained what I was suffering from.

I feel very lucky that I didn’t have the invasive procedures that a lot of ladies here have had because of ignorance of GSM which I knew would have been the next step for me because my symptoms got out of control and knew I wanted to be dead and not to suffer anymore, and all that was needed was oestrogen,  and I feel lucky again that I am not oestrogen sensitive like a lot of ladies because that just makes the condition so much more complicated with side effects caused from the very treatment that is meant to help.

The nurse agreed with me if I needed daily treatment of Vagifem and Estriol then that was ok to carry on, we are all individual when it comes to what works for us and its up to us to explain this to whoever we get our prescriptions from.

[Jules]

Ayesha I think I'm probably a little sensitive to estrogen hence the side effects, I have twinging breast pain at the moment.  But you're right. It's difficult to talk about, I haven't told any family. Who wants to tell someone that your womanhood is wasting away, hard enough being judged by your aging face. And the first doctor I mentioned it to, looked embarrassed and changed the subject. There must be so many women suffering, all the women of our mothers' generation. How did they cope. I have a friend in her 70s who's breezed through menopause with no noticeable changes. I'm envious.