Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Ruby2]

Hi I’m a new member and just wanted to know if anyone has experienced similar to me. I was diagnosed with severe VA about 6 years ago (whilst in peri menopause). This resulted in structural changes/fusing to mainly the vulva. I did have a biopsy for Lichen Schlerosis which came back negative at the time. Over the last few years the problem had gotten slowly worse and almost all of my clitoris has been covered by the fused labia. (No period for 2 years now). I have been using Ovestin topical cream for 6 years which has helped but not enough, as sex is still sore sometimes. I’ll be starting HRT patches in a couple of days so hopefully that will help. Also being sent back to gynae for further advice. This has caused me a great amount of anxiety and worry as it is quite distressing at times.Has anyone experienced this or anything similar? And has anyone found HRT to benefit ? Thankyou.

[Joaniepat]

Hi Ruby2 and welcome. I cannot help directly, but in case you are not aware of it  there is a private Vaginal Atrophy Facebook support group where you can find advice from those in a similar position. Just search on Google for it and ask to join. I hope the systemic treatment helps.
JP x

[CLKD]

Hi!   



where has your GP been allowing this to continue  - fortunately there are various ways of treating atrophy to lessen the chance of this fusing happening, as Joaniepat suggests, do join the private Group.

In the mean time use the 'ovestin' twice a day if necessary, when I get the need2P feelings I stuff a dose up mid-afternoon and take Nurofen to ease any nip as urine flow stops and continue nightly for at least 3 weeks.   Some use 'vagifem' internally as well as 'ovestin' or yes sylc moistorizros on the outer labial area.  [do read the websites for the latter products, U may be able to get free samples ;-) ]

KY jelly can help too.  Gynaecologists often don't know much more than some GPs seem to about VA, R U aware of dedicated menopausal clinics, both NHS and private.  There are waiting lists.  Let us know how. you get on?

[buffy26]

Hi Ruby,
Sorry to hear of the distress you have had. You seem to be very low on estrogen to have experienced this, I have experienced something similar, with fusing and tissue loss. I think this occurred pre use of Vagifem and HRT treatment. The gynae I saw in September said likely LS and prescribed a steroid ointment. She advised me to cut back on the Vagifem and my practice swapped me to a generic type of pessary and also generic emoilients. I then went downhill rapidly. Now I am back on the Vagifem which is a lot more expensive but I believe far superior and I have returned to appearing quite healthy, Vagifem for me is 100% necessary , and I notice after leaving it a day or so (when I have recently experimented on this) that things really decline quickly, particularly the colour of the skin, I literally turn purple! I saw a dermatologist on Monday, she offered a biopsy and I said queried how necessary was this as there was no sign of LS. The investigation was a mere glance I felt, also she was not a Vulval dermatologist, I am hoping all is ok with that conclusion, but at least I have the steriod. I was told to continue preventative dose of steroids weekly and keep up the regular Vagifem.

[CLKD]

buffy26: LS has to be diagnosed correctly, I don't know why medics said 'likely to be LS' or other conditions.  Steroids should be used with care, they do a good job short term.  I had a small pot which I had to 'use sparingly' towards the end of radiation treatment on a breast: looked like it had been left in the sun for too long  . 

Aappropriate VA treatment along with a moisturiser when necessary is the way to do.  Little and often ;-). 

[buffy26]

CKLD, thanks for saying. Yes, I was told to rub in every night all over the vulva if I thought there was activity, then I ended up in a right state.  Perhaps I should have had a biopsy to really be certain if it is LS. I am not itchy at all. The gynae said likely to be either LS or L Planus based on my health profile. The next review is September with Gynae.

Wondering if I should still use the steriod sparingly once a week just in case, to prevent any further loss of labia tissue. I was unaware VA could also have this impact in a similar way.

[Ruby2]

Hi Ruby2 and welcome. I cannot help directly, but in case you are not aware of it  there is a private Vaginal Atrophy Facebook support group where you can find advice from those in a similar position. Just search on Google for it and ask to join. I hope the systemic treatment helps.
JP x

Thankyou I will join that too.

[Ruby2]

Hi Ruby,
Sorry to hear of the distress you have had. You seem to be very low on estrogen to have experienced this, I have experienced something similar, with fusing and tissue loss. I think this occurred pre use of Vagifem and HRT treatment. The gynae I saw in September said likely LS and prescribed a steroid ointment. She advised me to cut back on the Vagifem and my practice swapped me to a generic type of pessary and also generic emoilients. I then went downhill rapidly. Now I am back on the Vagifem which is a lot more expensive but I believe far superior and I have returned to appearing quite healthy, Vagifem for me is 100% necessary , and I notice after leaving it a day or so (when I have recently experimented on this) that things really decline quickly, particularly the colour of the skin, I literally turn purple! I saw a dermatologist on Monday, she offered a biopsy and I said queried how necessary was this as there was no sign of LS. The investigation was a mere glance I felt, also she was not a Vulval dermatologist, I am hoping all is ok with that conclusion, but at least I have the steroid. I was told to continue preventative dose of steroids weekly and keep up the regular Vagifem.

Hi thanks for your response. I’m not sure why the GP didn’t suggest the biopsy as that is the only way they can diagnose it properly. That said, my doctor has now told me that biopsies can occasionally give incorrect results. This could potentially mean I’ve been walking round with LS for 6 years (symptomless I might add, apart from the fusing.) I don’t really want another biopsy as they are quite uncomfortable and waiting for the results gave me horrendous anxiety last time.
I was also given steroid cream to apply as a preventative measure which only made the burning worse. I’m not sure they know what they’re talking about sometimes.
Did you say that the skin started to correct itself once you went back on to vagifem? Do you mean it infused?
Ruby

[buffy26]

Once I went back on the Vagifem from the Estrodial things improved very quickly. I also think the steriod may have caused issues too. Although the labia is still fused and there is some loss, things look a lot better. The tissue is plumped again and the colour is normal. I think cutting back from every night with the pessaries down to twice a week is another reason the appearance went downhill. In all honesty the changes in regime all at the same time has made it difficult to pin point the exact culprit but I am so glad to be back on the increased Vagifem to get back to some kind of normal again

[CLKD]

I wonder why a steroid cream would be advised for the very tender skin of the vulva/vagina?  Especially when there are appropriate creams ?

Do U not think Buffy26 that if there is concern about LS,  you should be seen more regularly, i.e. every 3 months ?  Until a correct diagnosis is made.  I would be very concerned to be using a steroid cream without supervision 

[buffy26]

I wonder why a steroid cream would be advised for the very tender skin of the vulva/vagina?  Especially when there are appropriate creams ?

Do U not think Buffy26 that if there is concern about LS,  you should be seen more regularly, i.e. every 3 months ?  Until a correct diagnosis is made.  I would be very concerned to be using a steroid cream without supervision 

I do think this, however when I was at the gynae clinic and re-booking the follow up (this was in Jan) they said the consultant was on holiday and therefore there will be a back log of patients, so I was offered an appointment in September. The consultant advised me to use the steroid as a prevention because the damage was historic and there was no evidence of active LS at that time. She advised that I should monitor myself and if I noticed any white silvery streaks to up the treatment to nightly. I did that a month ago and I think I almost destroyed the tissue, it was a horrendous looking mess! Prior to that though, I was going downhill with reducing the Vagifem to twice a week and also switched to the generic, it really was not the right thing to do. I am now very familiar with how my body responds to treatments and think I have finally concluded Vagifem keeps me ticking over with once a week preventative steroid. It must have been LS to have caused the loss of the labia minora in parts. Now I need to get on top of the night sweats, I am sick and tired of damp bedding and nightware! Does anyone know if night sweats can come so regularly after not being a major issue in the past? I am 6 years post meno, meaning that was how long ago I stopped my periods

[CLKD]

'must have been'  without a firm diagnosis.

Vaginal atrophy mimics other conditions really really well: some have to use treatment very night for ever.  Regardless of what the leaflet in the box or medics suggest ;-).

I believe that night sweats can appear later, because ovaries continue to kick out enough hormone. Even those who have undergone removal of ovaries may have symptoms if the stem is left behind 

[buffy26]

I wonder if all those with LS had a biopsy first, I guess I could leave off the steroid and monitor to see if the symptoms come back but thats a dicey chance to take. Not sure how quickly destruction of tissue occurs in flare ups!
The atrophy before HRT was really awful. I was visiting the loo all through the night, thankfully just one trip now!

Thank you for the insight on the night sweats. I need to try and sleep naked, its just a weird feeling as Ive always been a PJ girl!

[CLKD]

 . whereas I can't bear jim jams ............. 

Ruby - R U keeping up, we likes a meander we does 

[Ruby2]

CLKD
It does appear to have gone off on a bit of a tangent doesn’t it.  Thanks for the advice. I think major paranoia and anxiety has set in due to the fact that I was biopsied for LS over 6 years ago and told I didn’t have it, the fusion continued, and I’ve now been referred back to gynae (with a 50 week wait I might add), as she thinks it’s possible the negative LS result could have been wrong. Therefore if I’ve been walking round with LS for 6+ years it can increase the chances of vulval cancer! It’s put the fear of Christ up me I can tell you. Never had any other symptoms of LS other than the slow fusing over many years. I am thinking probably VA which hopefully will improve once I’ve been on the HRT patches for a few months. Thanks for your advice