Vaginal atrophy and lichen

Hi, new to this site but i'm at my wits end and really looking for some support. Its not something easily discussed with family or friends at its so personal. I'm at a low ebb because I lost both parents recently but this is causing me so much distress. I've tried every over the counter treatment and eventually things were so bad I'm unable to be intimate at all. The discomfort during and after intimacy is so bad sitting down is uncomfortable, its like sandpaper has been used - awful and I've never felt more isolated and unfeminine.  I have small lichen patches on the perineaum which are also sore and the Dr has prescribed a steroid cream which needs to be used for at least a month to see if it works. She has also referred me to a gynacologist as my symptoms are so severe. Estradiol has had no effect whatsoever and I just wondered if anyone has had a similar situation with a positive outcome. thank you very much in advance x  

Comments

  • KazKaz Posts: 482 mod
    edited April 12

    Hi ScooterJ13,

    Welcome to the forum. We’re so glad to have you here.

    I am so sorry for your recent losses. It makes it even harder to deal with physical symptoms when you are still processing your grief - my heart goes out to you.

    You're absolutely right - this is a very personal subject, and I think I would also find it difficult to speak to my friends or my partner about it.

    I have no experience of lichen as you describe it. I guess you have to let the steroid treatment do it’s “thing.“. You don’t say how long you’ve been using the treatment. I’m not very patient, so I know I’d want it to work immediately, but I know that things don’t always work as quickly as we want them to!

    I did suffer for a while with dryness, but it sounds nothing like the symptoms you are describing. I can only imagine how painful this must be for you. It’s no wonder you are feeling so low. You’re coping with such a lot at the moment.

    I managed my dryness symptoms by using Replens to begin with, but I found the Boots own brand equivalent was very good too. I also found an article by Maryon Stewart suggesting to take Omega 7 Sea Buckthorn capsules as a supplement. I don’t really know whether that had an impact. It’s recommended for treating vaginal dryness, but I was prescribed HRT patches, so I don’t know whether I can attribute feeling better, and more like myself to the Omega 7 or the HRT or BOTH!

    I completely understand when you say it makes you feel isolated and unfeminine. It absolutely does, but I hope that now you’re seeking treatment, those feelings will diminish in time.

    I'm so glad you’ve got a referral to see a gynaecologist. I really hope that comes through quickly for you.

    Ive attached the section from the website on vaginal dryness and low libido - perhaps there will be something in it that would also be helpful?

    Please keep in touch and let us know how you get on 😊


  • ScooterJ13ScooterJ13 Posts: 5

    Thank you so much for your reply, you have no idea how I appreciate your kind words. I've tried to deal with this for so long and tried the Omega 7 and all other products so am willing to try ANYTHING else the doc wants to throw at me! Menopausal women are still vibrant and capable of having long-term love lives so i'm also really hoping the gynacologist can help. Bless you xx

  • yagz143yagz143 Posts: 2

    Try Membrasin! Works great for vaginal dryness. It's a supplement that you take orally - just google it.

  • VALONEILL1VALONEILL1 Posts: 1

    Hi,

    I suffered some kind of gynae problem or other since the young age of 15. The following years were spent looming from one gynae problem to another. I'm now 52.

    I expereince symptoms similar to those which you describe in the years before menopause and I too found it unbearable to the point that it absorbed all my waking moments and stole all my intimate ones too.

    They never did find a suitable cure for me although Lord knows they tried. I eventually was referred to a 'skin specialist' in a clinic where they don't call your name, simply give you a number.

    No-one explained that was where I was being referred and sadly my mum accompanied me to the appointment to my embarrassment. The consultant there was very nice - if not a little abrupt and quickly diagonosed severe psoriasis ( I could have told them that - all I wanted was a cure…)

    I am finally free of all the synptoms now that menopause is upon me. Not sure I've helped at all with this news but wanted you to know that you are not alone. There must be many more of us suffering in silence and I applaud your contact here and wish you well - you will get your life back!

  • Sami50Sami50 Posts: 2

    Hello I'm new to the site I have beening suffering from urinary problems for 2 Months uti then no UTI then dryness ect and pain has anyone else had these problems .

    Having so many problems at moment physically and mentally nightmare .

  • ScooterJ13ScooterJ13 Posts: 5

     

  • KazKaz Posts: 482 mod

    Hello @Sami50 ,

    I can only imagine how uncomfortable this must be for you.

    I only have occasional problems with UTIs and I was always told to drink lots and lots of cranberry juice to help flush it through my system. That advice seems to have changed lately , and it seems that the acid in cranberry juice isn’t really helpful at all - let’s face it, the advice about everything changes so often, it’s hard to keep up!

    There was a discussion about recurrent uti’s on the Facebook Group a short time ago. A product called D Mannose was mentioned, with several women saying that they had some success with it. It may be worth a try for you, but the usual warnings go alongside this. If it’s a new product to you, please always seek advice from a pharmacist or a GP. Side effects mentioned for this include bloating and upset tummies, and if you are diabetic, then this may make controlling your sugar levels difficult, so you should avoid.

    See attached information from Webmd for more information


  • Sami50Sami50 Posts: 2

    Hi kaz thank you for your advice it's been a nightmare the last 3months I have had problems with my teeth I have never had before awful moods depression and awful night sweats which in teen I can't sleep in on get patches100mg which don't seem to be helping estrogen pessaries

    Omg it's so hard at the moment but it's nice to no I have found a place were I can ask and find out how either peps are coping 😃

  • KazKaz Posts: 482 mod

    It all gets to be just too much doesn’t it?

    I really love the forum - it definitely helps to know that you aren’t on your own!

    Get yourself a cuppa and have a read through some of our discussions. There are loads of helpful tips for all sorts of symptoms!

    You know where we all are if you need some help or just want to let off some steam 😊

  • ScooterJ13ScooterJ13 Posts: 5

    Thank you for all your comments and advice, you are all very kind and its so helpful and very much appreciated. I saw the gynae a couple of weeks ago who I have to say wasn't terribly sympathetic and said Dermovate was the only treatment. I've tried this for 2 months with no change at all and tbh it feels worse. My GP said the gynae should suggest other options but i'm a little despondent. I'm booked in for a biopsy on the 15th just to confirm the diagnosis then will review with my GP what to do next. I do think A dermatologist could be a better course of action as it has ever been a vaginal dryness issue - all external discomfort especially on the perineum. I think this is why the over the counter remedies have never helped or the Buckthorn, all i have tried over the last couple of years.

  • ScooterJ13ScooterJ13 Posts: 5

    I've had a few extra flare ups recently and have no idea what caused them. Everything seems completely excoriated from front to back - like really bad saddle sore. Its laughable if not so yucky as I'm currently sitting on one hip because its the most comfortable and have sudocreme for between the buttocks, Dermovate on the perineal area and Vagisil for the vulval area, its so sore and like a previous comments occupies my every waking day. I nearly swerved the car as whilst listening to the radio the other week Woman's Hour did a little section on lichen scleroma and its the first time I have ever heard it mentioned.   

    I will keep you posted and hoper everyone here gets the right help as well! x

  • KazKaz Posts: 482 mod

    Hello again @ScooterJ13 ,

    As I was writing to Sami50 today, I wondered how you were doing 😊

    Thank you for the update - I wish it was better news from you. How frustrating and how PAINFUL!

    Isn't it demoralising when the people you go to for help seem so insensitive to your situation? I've been in similar situations and my only words of wisdom are, please, please, please keep going! It might take every last bit of patience and persistence that you have - but you can find some help. It may just take more time than you want it to !

    It does sound as though your GP is on your side - they must be frustrated for you too. I would have thought that the gynaecologist should have been able to offer more options. Perhaps your GP will now be prepared to refer you to a dermatologist? Have you asked them to?

    Forgive me - I'm sure you have searched far and wide for answers. I'm not sure if you're in the UK or overseas, but I found these websites/support groups online who may have some helpful information for you? It certainly couldn't hurt to have a look.

    (If you've already done so, then my apologies!)

    This is one of those times I wish could wave my magic wand and make it all better for you!

    Thinking about you! 💕


  • MaryMary Posts: 14

    Hi everyone - I have urogenital atrophy but not like any one else I’ve come across - I’m 59 years. And didn’t have irregular periods until I was 52 and now post menopausal I feel as if I don’t know my body anymore as despite having all the tests to exclude cancer i still bleed everyday and pass blood in my water - I did try oestrogen cream but after about 2/3 months I had to stop as suffered severe nausea and migraine type headaches - am now having blood tests to see if anything’s going on - it’s a horrible thing - am I alone in suffering from this? I also have period like stomach cramps and I think my hormones have gone haywire!!!!

  • KazKaz Posts: 482 mod

    Hello @Mary

    It's nice to hear from you again - but it sounds like things aren't great at all!

    I'm so sorry you're having all these problems.

    Are you seeing a specialist of any kind?

    Have you ever been told about menopause clinics? I wonder if that might be the place you should go to for help with your atrophy.

    A menopause clinic specialises in all things Menopause and HRT related, including issues like the ones you're dealing with. You need to be referred by your GP (fingers crossed that there is a clinic in your area) but you will probably have to ask for that referral! And you shouldn't be afraid to ask! I'll pop a link at the bottom of this reply for you to search for one in your area. There are NHS ones, but there are also private clinics if the budget stretches that far. I would try searching just for NHS first. I certainly didn't have the budget for private! If there is one and travel/distance is an issue - you can ask about a phone or "attend anywhere" consultation which is a bit like a skype call!  

    I wonder if you've read the book My Menopausal Vagina by Jane Lewis? I found it very useful.

    I hope you can find something that gives you some relief 😊




  • MaryMary Posts: 14

    Hi Kaz

    thank you so much for your advice - it is much appreciated and I will definitely follow it up xx

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