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[Snowcat]

Hi.  I’m probably in the wrong place (again!) but I find it really difficult to understand how this site works!

Anyway, I think I’m finally starting to feel a bit better - the vulva pain isn’t constant anymore and I can now sit for a couple of minutes! I’m using estrogen cream (formerly known as ovestin) vagifem and Estraderm 50 to patches for the last month or so. 

Yesterday I got a bit carried away with excitement at not waking up in pain and I sat down for too long (tried a donut cushion but that was even more uncomfortable.. so today I feel like I’m back to square one! So my question is has anyone had this issue during recovery from vulval atrophy, and if so how did you deal with sitting down?

I’ve a 30 min drive to and from the hospital on Thursday and I’m dreading it.. just the stinging and burning afterwards takes ages to settle down.  I’d like to use the Ovestin twice a day but the tube won’t last and I doubt they’ll give me more… so far I’ve tried hydromol, YES products, epaderm, olive & bee and coconut oil.  Nothing seems to soothe the skin once it gets angry .. I know it’s early days but to have some glimmer of improvement has done a lot for my mental health ..

Thanks for any advice - it’ll be really appreciated x

[Dierdre]

When I'm really sore and having a flare up (been OK for a while now 🤞) I use Dermovate. It's on prescription only  but it really sooths and calms down the burning sore skin, heals it quickly so I can apply Estriol cream without it stinging and start applying moisturisor again. The only moisturisor I can tolerate is YES water based and I've tried alot over the years. I used sit on a medical doughnut at work.
The game changer for me is since using Vagifem every day and Estriol externally every night. Anything less just doesn't work.

[Suziemc]

Can't help with your question but wanted to say don't worry about where you post!

A lot of us use the 'show unread posts since your last visit' link to see everything rather than looking in specific sections. For me (and it's just a personal thing, we all have different ways of working!) its more important that a post has a meaningful title so I can see if it's something I have experience of and possibly be able to respond to in a meaningful way.

Admin will always move a post if it's in a totally inappropriate area of the forum. Post away!

Hope you get some good advice x

Suzie

[Snowcat]

Thank you Suziemc - that’s reassuring!

And thank you Dierdre for your reply.  Unfortunately it was dermovate that made the atrophy so much worse as I was misdiagnosed and told to use dermovate and when I saw the gynaecologist she said it had thinned the already damaged skin so I’m steering clear of that - at least until the skin heals…

I have got some YES WB so I might give that another go - I’ve been using vagifem for years and the estrogen cream nightly for the last 4 weeks.  I’ve been on the patches 25 mg since 22 April but the gynae put it up to 50mg on 27 May.  I used to be on oral kliofem which worked really well but they took me off that when I had pulmonary embolisms (not caused by the HRT but they all panicked) so have tried to survive on just the vagifem - that hasn’t been enough so I’m trying to get myself back to feeling human again! 

[Dierdre]

I've been alot better since using the Estriol cream as well on the vulva, Vagifem is great internally but never really reached the outer bits. I've been using Dermovate intermittently for years but never more than a couple of weeks at a time, that was usually more than enough as it's a strong steriod cream. Now I'm using Vagifem and Estriol cream every night my VA has been under control and very rarely get sore now.

[Snowcat]

That’s good to know Dierdre.  I’m pleased you’ve found the right treatment and that you don’t get sore anymore - that gives me hope!

Can I just ask how long it took for the estrogen cream to give you that relief please!

[Dierdre]

I had been already using Vagifem 5 per week, for a few years but was never 100% comfortable. Things got much better within a couple of weeks after using the Estriol cream externally every night and also upping the vagifem to every night too.
A tube of Estriol lasts me about 3 weeks using a fingertip amount all over the vulva and also just inside around the urethra.

[Ayesha]

If you are over 50 you can purchase extra Estriol from Boots, called Ovesse, if you wanted to use more.
The condition comes and goes and takes a while to work, its all about patience unfortunately.

[Snowcat]

Thank you Dierdre - seems I’ve just got to be more patient.  My VA was made even worse by the inappropriate prescribing of dermovate.  I feel like it’s all on fire this morning … and I thought things were improving 😩

Thank you too Ayesha - I didn’t know that - I’ll be popping along to Boots when this heat dies down!

[Snowcat]

Hi.  Thank you all for replying to my ongoing questions.

I was just wondering if anyone could tell me if recovery from vulval atrophy is up and down?  I’ve had 5 pretty good days and was feeling optimistic but today has been awful - like back to where I was 6 weeks ago - it’s so disappointing.  Then I wondered if others have experience of this condition being a mix of good days and bad days, in which case I’ll not feel as bad.

Today was so awful - I used some extra estrogen cream (I’ve ordered some Ovesse from Boots so I can use a bit extra) and some hydromol - that didn’t help so tried YES WB.  I’m also on gabapebtin 300mg x 3 daily and I’ve a suspicion it might be helping a bit.  I’ve just lost 2 1/2 stone (intentionally) and I do remember the last time I lost a lot of weight (did the lighter life diet and lost a lot of weight) was when I first had problems with low estrogen.  I’m wondering if rapid weight loss could be a contributing factor as estrogen is stored in fat cells …. I’m only a stone off my goal weight now so don’t want to stop …

[Ayesha]

I think you might be overthinking things. It can and does take up to a year to be symptom free but anything that affects the body like a virus or stress, recently I suffered from sciatica and because the nerves are in that area I suffered a bad flare. I also suffered badly when I decided to have the flu and covid jab together, it resulted in an extremely bad flare because of the effect the two vaccines had on my immune system.

Therefore anything like that will affect the condition and that usually means using more treatment which should clear up symptoms quite quickly.

[Snowcat]

Thanks Ayesha.  I think you’re right - ou bodies are constantly changing and I expect sometimes our immune system gets on top of things and other times it struggles.

Today was made worse I think because I had to drive - for only about 30 mins but I couldn’t wait to get out of the car when I got home and my undercarriage is still very sore now 7 hrs later.  Got to go to the hospital (40 mins each way) on Thursday and I’m dreading it.  Just sent off for some vulval harmony - it has excellent reviews (but expensive) but right now I’ll try anything!