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[Flossieteacake]

I'm having pH issues so I've put this post here under 'vaginal dryness' because it's linked.

The pH changes have been pretty significant for me, but I'm so early that they've not tested me yet so no HRT and it's months' wait for a referral (3 months so far). About 15 months ago, I got night sweats, then they went. I got similar symptoms to gall stones and a few other things so they did all sorts of other tests and put it down to (early ish, but not early enough to be called 'early') peri-menopause at 39.  Now, I have:
- a reaction to my own sweat so I have to use sudocreme on my underarms every night
- minor vaginal dryness, thankfully not noticeably so for my sex life (though my libido is well down)
- itchy skin, everywhere
- Periodic Limb Movement (flailing limbs in your sleep, linked to restless leg syndrome) flare ups and occasionally restless legs (though the latter isn't really that bad, PLM keeps my husband up)
- and now cystitis. I was prone to it as a youngster, so I'm very scared of it because it had such a huge impact on me at college and uni. Particularly now because I have an hour's drive home from work and the public toilets are seasonal. I drove home with a plastic bag on my seat and I had to go in the bushes in a layby. Its so traumatic. I'd rather have the night sweats again.

I dont even have any friends in the same position because I'm so young.

The PLM and Cystitis flared within 24 hours of one another which was odd, there seems to be no other link but menopause.

My plan with the OBGYN team was a combined coil and HRT based plan. Since symptoms have increased,  I requested an NHS referral to initiate the plan. To do that I called the GP, they texted me with a self-referral number which I called. They told me because my coil is not for contraception reasons I had to call my GP back and ask THEM to refer me (what a joke). They did that and I got a letter two months later 'we're sorry for the delay' ...I have to admit I am VERY angry with the NHS team. The NHS claim to be patient-centric but I work in a public facing industry and I had to do everything myself. No one said 'I'll contact your GP for you and sort this' no one said 'are you ok?' no one said 'do you need help with this?' and what a waste of my GP's time. I should have just lied. I'll remember next time. But that's not a patient centric service, they didnt offer me anything and have asked me to do everything.

Anyway, it seems I cant solve the issue until the NHS solve theirs.

Vaginal dryness and pH changes apparently lead to better environment for faecal bacteria which can then lead to cystitis so I'm living in permanent fear of another bout which is further affecting my sex life and I can't do anything more about it.

Suffice it to say I'm not having a great time this weekend.

Hello Laura and welcome. It sounds to me like you have vaginal atrophy and you need localised oestrogen. This will help with the UTI type symptoms. I understand your fear of cystitis, I too had it constantly in my 20s. You are not alone having such symptoms at your age. I started HRT at 38.

It is so silly you can easily have the coil for contreception but not HRT.

You will find it helpful to get some vaginal moisturiser. Yes and Sylk are gentle.

If you have to wait for the coil perhaps you can ask for an appointment for a different HRT.

I understand how overwhelming this is but you will find lots of support on here.

[CLKD]

Get some suitable vaginal atrophy treatment, you don't need an examination - it should be enough to tell your GP/Nurse Practitioner for 'vagifem' and/or 'ovestin'.  The idea being to use it every night for 2-3 weeks following an as necessary regime: some require nightly, others can use every 3rd and 6th night ...... let us know how you get on.

[LauraInScotland]

Thank you. It's so good to have such a quick response and advice. I'll look into the products you've mentioned. Its so difficult trying to figure it out on your own! My mum had completely different symptoms and has had different issues of her own and my friends, all well into their 40s, aren't experiencing anything yet!

To be clear, the coil is to manage the periods (I always had horrendous periods and PMT which is a family thing) separate to the need for HRT but to help manage the potential for unpredictable PMT.

Really appreciate such a quick response, thank you!

[Flossieteacake]

Thank you. It's so good to have such a quick response and advice. I'll look into the products you've mentioned. Its so difficult trying to figure it out on your own! My mum had completely different symptoms and has had different issues of her own and my friends, all well into their 40s, aren't experiencing anything yet!

To be clear, the coil is to manage the periods (I always had horrendous periods and PMT which is a family thing) separate to the need for HRT but to help manage the potential for unpredictable PMT.

Really appreciate such a quick response, thank you!

I do not know anybody going through this either. That is why this forum is so helpful.

Ah so the coil is to help with heavy periods. I really hope they do that for you. I cannot understand why it seems so difficult for them. Destrogestal is a progesterone pill that can help periods to be lighter but for the progesterone part of HRT two pills a day are needed

[SuzyBart]

Evening all, first time poster here 👋
I've been prescribed Ovestin by my GP for dryness as sex has become almost impossible (even with using Yes). I'm really nervous about trying it as I've reacted badly to the combined pill in the past and I'm worried about side effects. Any tips for a first time user, perhaps starting on a reduced dose or something? I don't want this to be the end of my sex life, but then I hear about people getting DVT / headaches etc and it makes me worried to get started. Any pointers would be really appreciated

[Ayesha]

Hi SuzyBart, welcome to the forum.
You might find it better if you post in the All Things Menopause page of the forum, this thread is a bit hidden away for most of us to take notice.

Your concerns are very common but if you search for 'the burning club' thread in the private lives page you will find lots of amazing info. Also search for Vaginal Atrophy, again lots of great informative posts.

[CLKD]

Hi Suzy - welcome.  VA treatment is very localised, used every night for 2-3 weeks initially.  Do read the various threads as suggested, make notes ;-).  VA won't improve without localised oestrogen replacement - Quality of Life is important.  Is there a history of DVT in your family?

[kathryn22]

Cope with it ??
Who copes with it ??
At best you manage not to go insane too often At worst you think your life is over
I found a massive lack of empathy and a huge amount ignorance from the professionals made things so difficult
I was unfortunate not to respond to the generic treatments and had to research alternatives for myself and then request them from the GP who then had to go and look them up as they had no idea what to prescribe
Its honestly been the worst time of my life by far affecting my mental health severely my relationship with my partner and family has also suffered
I’m about to start Intrarosa now that the damage done by other meds is under control so hopefully this will work
But cope.. definitely not

[suzysunday]

I agree.  It's really difficult to cope with physically and mentally.  It's devastating when you find out, especially if you have no idea of the implications at the time, like I didn't.  It feels like a cruel joke by nature sometimes.

[Ayesha]

I still can't get over the shock of Vaginal Atrophy and what I can only describe as a disgusting condition. My anger at over 70 and never hearing of this condition and what was the scariest, neither did any of the medics in the surgery know what it was, instead treating me with antibiotics for bladder infections which were totally unnecessary.
Eventually I saw a Gynae at the surgery and she said you need oestrogen down there when I got to the stage I couldn't sit down assuming a prolapse, but still she didn't mention the name of the condition and I was too ill to ask!  I've been Mrs Angry ever since.

[suzysunday]

Yes, similarities to me a few years back.  I was late 50s and treated for bladder issues by female GPS.  Really infuriating.

[kathryn22]

Hi Suzysunday & Ayesha
And the irony is that even having posted on here in reply to an original post by a specalist, NOTHING will change, do these posts even get read by the professional bodies.
There really needs to be a change in attitude. A reference point for GPs to get information and services that can be responsive to alleviate the distress of this condition quickly and effectively.
I’ve found it’s like being abandoned in a wasteland where nobody can hear you, nobody can see you and every wall is a barrier that you can’t get over or round
Perfect example I’ve been waiting to see a specialist dermatologist due to the reaction I’ve had to the oestrogen cream Waited 5weeks (private appt) as practice didn’t send off letter and today received appt to see the gynaecologist I saw in Jan who wasn’t interested in the atrophy but did offer to fix my prolapse!! So how do you even get to see the right person I just give up

[Ayesha]

But what's even more bewildering, how did Vagifem and Ovestin suddenly out of the blue become available to buy online or from pharmacies.
VA has been the biggest mystery to all medics and to a lot of women to my knowledge, who the heck forgot to tell us, oh btw as you age you might experience a very nasty, horrific condition and its called Vaginal Atrophy and you will need treatment for life but never mind here's another course of antibiotics, now bugger off!

Nobody gives a damn!

[suzysunday]

Couldn't have put it better.

[Lillyg]

I was using vagifem, and the GP said twice weekly, after the initial 3 weeks of every night. Then it didn’t seem to be as good, and I had terrible cystitis symptoms (no bug in the urine though) had 2 lots of antibiotics which did nothing, so I changed to Ovestin. The problem is I did the initial loading of every night, and now on 2 x weekly and the bladder pain comes back. I spoke to a private GP (part of my health care) and he said use it every night (‘it won’t do you any harm’) I’m 71 and it’s the recurring ‘cystitis’ that is my worse symptom. Do any other ladies use vaginal estrogen every night?