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[Amazing grace]

Only 2nd time posting but want others experience and opinions, since May this year had va symptoms, diagnosed myself asked gp for vagifem she obliged no questions asked (phone app) no examination done didn't get on with it, tryed for 3 months had awful swelling, irritated bladder and burning much worse than original symptoms , asked gp to switch to ovestin, again no questions asked and she prescribed (phone app) still no examination, same reaction as vagifem, couldn't put up with it, after advice from my 1st post I requested the weaker 0.01% cream with a view if this didn't work I would then try estring as a last resort, only this time I spoke to a different gp one I actually prefer, he refused to prescribe any thing else and was not pleased other gp did so without an examination, I understand his reasons for that and agree he was right to do so, I went for examination yesterday evening, done by an experienced gp who I also like, she did a very detailed examination, said I have no obvious signs of va in fact I look very healthy there, only finding was a mild prolapse on the front vaginal wall but she said it was so mild it would not cause problems and to do kegals, she said her thoughts were interstitial cystitis going off examination and symptoms, prescribed, betnovate 0.01% on vulva for 7 days once a day, exocream to wash with and use as vulva moisturiser, and 10mg of amitriptyline before bed and review in January, my symptoms are as follows and began after a severe uti in May
Burning vulva this is pretty much constant
Frequent urination
Dry tight skin on the vulva
Sometimes sore around vaginal opening
Very irritated urethra
Itching
I basically feel like I have thrush constantly no discharge
Apart from frequent urination (I do not burn during or after urination) my symptoms don't match interstitial cystitis, on reading many posts here and symptoms on the Internet I think more va, gp now won't give me any vaginal estrogen and I'm now worried the prolapse will get worse without any, and if it's va in early stages this will get worse, I do use estrogel 3xpumps, had hysterectomy but still have ovaries, anyone have interstitial cystitis have similar symptoms, or those that have va do you think I should push for the vaginal estrogen, thankyou for reading apologies its so long.
Just to add I've had swabs done to rule out infection.

[CLKD]

Ring your GP and ask for a referral to a Gynaecologist in the first instance to sort any prolapse issues.  Ask for a referral to a dedicated menopause clinic for advice on the VA. 

[Whatsupwiththis]

Hi Amazing... That is EXACTLY how my VA started actually now called GSM which encompasses bladder, urethra, etc.  Sounds to me like typical VA .  It takes a long time for vagifem to work and even after 2 years of using 5x a week, I still get moments of bladder and vulva issues.  It's a tough slog and vagifem can be quite irritating as your tissues start to plump up.  I agree with CLKD.  Perhaps a meno specialist might be a more viable option. 

Good luck and keep us posted.

[Amazing grace]

Thankyou so much for replying both of you, I will ask gp for referral to menopause clinic, I did think it seemed more like va, very much appreciate your advice

[CLKD]

Let us know how you get on?

[Amazing grace]

I will do, thankyou again

[Wrensong]

Hi Amazing grace, sorry to hear you are suffering in this way & that vaginal oestrogens seem to be irritating your symptoms.  It's frustrating as it can be so difficult to work out exactly what's going on in the GU tract at this stage of life & as you say, you don't want to be without vaginal oestrogens if depletion is part of the problem.  I've been in a similar situation & agree that a menopause specialist or perhaps a Urogynaecologist are probably your best bets to get to the bottom of it sooner rather than later.  It does sound like GSM & you may find you get some relief from following advice for self help for interstitial cystitis (in addition to what your GP has prescribed) while you're obliged to do without vaginal oestrogen pending more expert help.  In case you haven't come across it yet in your research, the following link is to a comprehensive website on IC I've found helpful. 
https://www.ichelp.org
A very experienced Gynae with a special interest in menopause recommended I try D Mannose supplements as well as the IC diet in addition to my topical & systemic HRT.  Another thought is that if you don't take testosterone as part of your systemic HRT this can also help with GU health so may be worth looking into.
Wx

[Amazing grace]

Wrensong, thankyou for all your advice, and I'm very grateful for the link you took the time to send me, lots of very helpful advice on the website, just hoping my gp will give me a referral to gynaecology, I'm assuming only a specialist will prescribe testosterone and not my gp?

[CLKD]

A menopause specialist can suggest Testosterone prescription to your GP 4 U.

[Amazing grace]

Thankyou CLKD, all you ladies are so helpful

[Amazing grace]

Wrensong, could I just ask you, as you have IC, does my gp giving me betnovate make sense? As its a steroid I'm nervous to use it, I haven't done yet, I understand the amitriptyline being prescribed and the exocream to wash with, I don't under why the betnovate, gp said it was to calm down skin irritation because I complained about itching, if va is in fact the problem won't betnovate cause thinning skin, sorry for all the questions, just wondered if you've been given it for IC

[Wrensong]

Amazing grace, my GP prescribed testosterone for me on the NHS at the request of the consultant who oversees my HRT, not in relation to the IC though it can help with GU health as mentioned.   A couple more links & extracts here:-

https://dralicescott.co.uk/wp-content/uploads/2020/03/Testosterone.-BJGP-March-2020.-Scott-Newson.pdf

"EVIDENCE TO SUPPORT TESTOSTERONE
USE IN WOMEN

testosterone supplementation . . . has also been shown to have additional benefits including the improvement of urogenital, psychological, and somatic symptoms"

http://www.bssm.org.uk/wp-content/uploads/2021/03/GSM-BSSM.pdf

"Testosterone is one of the sex hormones that women produce that is often overlooked. Women actually produce 3x as much testosterone than oestrogen before the menopause. Levels of testosterone gradually decline due to increasing age or reduce abruptly following oophorectomy.  Testosterone as a gel or cream can also be very effective to improve symptoms related to GSM."

First diagnosed with IC around 20 years ago, like you after a UTI for which I'd only been given a 3-day course of antibiotics, as it turned out too short to treat it effectively.  The IC is a chronic condition & I still have flares, but the diet or at least working out & excluding/minimising major dietary irritants can help keep symptoms at bay if it turns out IC is an issue for you.

Never been prescribed Betnovate for it, nor anything else for that matter, apart from a longer course of antibiotics after it was first diagnosed.  I understand your caution though.  Perhaps someone who has used it will be along to help with that.  We increased my topical HRT (Vagifem & 0.01% Estriol externally) from 5 nights weekly to every night at the last flare as my systemic oestrogen was quite low dose at that time.  Topical alone has never been enough to manage GSM for me.  I recently went back to 5 nights a week & have had another flare, though had also lapsed into a more normal diet, so probably only myself to blame!

Could you maybe mention your worries about the Betnovate to the prescribing GP, if you're comfortable talking to her?

[Amazing grace]

Wrensong, thankyou so much for all the information you've given me, very helpful and do appreciate the time you took to send me that, I will speak to my gp about betnovate, once again thank you

[Wrensong]

No problem Amazing grace.  Hope you soon make progress with it & feel much better.