25F struggling. 9 Months of Symptoms and no answers. Could it be LS?
Posted , 9 users are following.
Hi all,
I have found this forum and wanted share my story too see if anyone has experienced anything similar or can offer any help or advice at all.
I am almost 25 and have been suffering an ongoing saga now since the end of July 2019. After reading this forum and other things online, I am starting to think that I could have Lichen sclerosus.
I have been with the same partner for the last three years and always been healthy otherwise. At the end of last July I had a bout of vaginal itching when I felt some discharge also I presumed that I had thrush. I have struggled a bit with thrush in the past, to the point where I've had little splits at the bottom of my vagina. I was told by a STI clinic to continue to use the thrush cream for two weeks previously and they cleared up. So, with this in mind I self treated with a tablet and cream. However, this time the itch continued. I thought maybe as I'd had thrush a bit in the past I might need a second dose so I treated myself again with a pessary and cream. By this point was due on holiday to Spain with my partner. I had no discharge any more but I spent the first day still itching and in tears to the point where my partner took me to a Spanish doctor who prescribed us both a course of antibiotics. I think he thought I had BV, to my knowledge I've never had this. This funnily enough didn't help. I called my doctors surgery upon return who couldn't see me urgently but gave me a 1 week course of anti fungal tablets for a stronger case of thrush. This seemed to help with the itching and I thought I might be ok.
However as soon as we tried to have sex a week or later, I was in a lot of pain afterwards. It's like a hot burning pain. Upon inspection there was a small tear at the bottom of my vagina near the perineum, like a paper-cut tear that stings to the touch. By this point I was in Australia with my partner as we intended to do some travelling together. I sought out a Doctor there who swabbed the tear and said it was potentially Herpes. I was really scared at this and a bit confused as to where that would have suddenly come from as my partner had no symptoms at all but I read a lot online about how it can be dormant for years and I thought that must somehow be it. I was given a 10 day course of Valtrex to take whilst we awaited the swab results. They came back negative. The Australian doctor then decided to take my blood test to test for further STI's including HIV and Syphilis. I was given Fucidin ointment to use for a week in the meantime. These tests again all came back negative but my tear didn't seem to be any better. I was really scared to go to the toilet as sometimes it felt like I was ripping and would sting and itch after. I was generally miserable and felt like I couldn't enjoy what was supposed to be a special trip.
The doctor then suggested Pencillin for a week and a light Euraphat cream which I tried for another 5 days. When I went back another week later still struggling she said she couldn't do anything else and sent me to the Melbourne Women's Hospital that night.
I saw a gynaecologist there who commented that she had never seen these type of tears in a younger woman. She decided upon inspection that I had a little bit of thrush (I expect from the Penicillin). I was told to take an antifungal tablet once a week for 4 weeks, use sudocrem and she suggested I rinse myself with a syringe and vinegar. Needless to say I did not do the vinegar part. I am very cautious about what I put near my Vagina anyway due to past experience of thrush and the thought of vinegar on the tears made me cringe.
By this point I was really starting to struggle. I didn't feel able to be normal at all, sometimes walking was incredibly painful and a normal sex life was completely out of the window. I cried on the phone to my mum several times who suggested maybe I should come off my Pill and sit in salt water baths as that had helped after she had given birth. I had been on Rigevidon since I was 17 and I was reluctant to do this as my periods had been awful as a teenager.
October I feel ok for a bit but as soon as I have sex I am in pain again crying in the shower. My poor partner feels terrible for hurting me, he is very sympathetic and very kind but this problem can be very isolating. I don't feel like anyone understands.
Flash forward to November. I am back in England and my mum has made me an appointment with my GP. I tell her everything and present my printed out STI results. The symptoms aren't too bad at this point. She seems a bit baffled but says that sometimes people can get Eczema in this area and tells me to moisturise and come back if it gets bad again. I've tried putting sudocrem and vaseline on as a barrier before this point so I start to use E45 as well regularly. Sure enough I feel the familiar tear/ burn/ itch return a few weeks later. My Doctor couldn't see a tear at this point but decides to prescribe me Daktacort to use for a few days. This stings horribly when I use it but I persevere and it does improve a little. She referred me to a dermatologist on the NHS. The first appointment I can get is the end of April.
December sees another period of symptoms. I decide to see a private doctor who specialises in skin as the thought of waiting until April is unbearable. I have tried out a different brand of contraceptive pill in the meantime and noticed no difference so I make the decision to stop taking it in January when my last pack runs out. We use condoms for contraception when I do feel like I can have sex. The new doctor inspects things again they aren't too bad at this point and decides that my long term use-age of the pill has affected my hormones especially as I describe feeling dry often. I am given Vagifem intravaginal tablets which I try for two weeks then spread out over a further 2 months.
I still experience my symptoms. My next review with my doctor sees her take a swab for 'Strep B' which again was negative and her prescribing Lidocaine to use. This numbs things a bit but doesn't really do much else. I use Epaderm ointment daily and reapply after I use the toilet.
Ive had at least 3 occasions since then of symptoms. So far I've never seen any white patches but I get intense itching around the bottom of my vagina that I do my best not to scratch but this can be worse at night. I haven't worn a thong or any nice underwear since this all started and I am careful to not let anything irritate it. Mainly it seems to be these little tears which are always at the bottom of my vagina or I have noticed them in my anus also. My perineum is very tender and dry feeling and will split if stretched. Sometimes I feel like a strange buzzing feeling in the top of my vagina around my clitoris which is very odd and there isn't anything I can do about it. I can feel a bit 'hot' around my urethra after I pee and I get nervous to poo sometimes because of the tears. I drink a lot of water to combat this and try and eat a lot of fibre. I can be ok for a few weeks but it just seems to flare up at random. I've been tracking things on the clue app and there doesn't seem to be any pattern. I can be walking along and just feel myself start to itch. I've got a tear at the moment which just came on after a period of itching last weekend.
Anyway... If you've made it though all that, you will probably sympathise that I am now at wits end. I was supposed to see my doctor at the end of March but now Covid- 19 has put a bit of a spanner in the works. I have managed to get a telephone appointment on Tuesday. I am going to ask my doctor specifically re Lichen Sclerosus. She has mentioned a biopsy previously but we haven't done one yet. I guess she wanted to eliminate everything else first.
I just wonder if anyone has been on a similar journey and it has turned out to be Lichen Sclerosus. have spent hours online 'googling' my symptoms which usually ends with me convincing myself I somehow have Herpes and lots of tears. I am starting to feel incredibly depressed about the entire thing. I'm trying so hard to be positive but I just don't feel like anyone has been able to help me and It's been 9 months now. I don't feel like I can live a normal life at all. I am scared to bend down sometimes in case I rip. I don't feel like I can exercise, something which I miss terribly and my sex life is ok for a few days at a time. I just don't know what else to do.
Sorry for the long post, any advice or thoughts welcome.
Thank you
0 likes, 13 replies
SnappyCat anna06268
Posted
Sounds like LS to me.
itching and the post-sex burning. yup.
fiona72391 anna06268
Posted
H Anna like yourself I always thought I had thrush the itch was soo bad nd I had a discharge.I went to my gp she told me I had LS cos my labia was fusing nd white patches..she put me on betnovate for the itch..I use to feel having sex very painful cos of the dryness nd tightness ,wat I use now is olive oil inside nd out nd find it really strecthes my vagina walls to be be honest it's never been as good.I take bread soda baths every nite but so far its working for me 🤗
fiona08095 anna06268
Edited
Hi Anna - so sorry you are suffering so much. It makes one feel very alone with no meducal professional to turn to who knows what's going in. I hope you find some of this information helpful.
My journey through LS
I was diagnosed with LS about 2 and a half years ago. I was scared, horrified and couldn't believe what was going on "down there" and what I saw when I examined myself with the magnifying mirror for the first time. My vulva area was ulcerated and raw, the mucous membrane all over was full of white spots, my labia minora were white and dry and chapped and with hard skin, my clit was hidden by a thick white hood and I had lost definition through fusing of everything and the vaginal entrance was very small. The skin in these areas was very thin, and the entire area was very pale, thin and lifeless. The LS was in a figure 8 and had also affect the anal area as well. A few days before this I started feeling a rough hard area during showering and it became incredibly itchy. I thought it was thrush and so treated it with thrush cream which eased the itch. The GP told me it was LS and simply prescribed some steroid cream and sent me on my way. I saw a gynae who also just told me to use the steroid cream and come back for a regular annual visit. I felt as if I was leper as no one wanted to know or help me with my problem and they weren’t very interested at all. I was desperate. The doctor admitted that she didn't want to talk about it because she really did not know much about it.
I began researching as I realised that I had to help myself to recover and beat this thing. The more I researched I realised that my body was lacking certain vitamins, minerals and trace elements for it to function properly. I also found an Holistic Medical Health Practitioner who I consulted along with his referred gynae who worked hand in hand to help me. I have reversed 95% of the labial fusing, my vaginal entrance and vulva area are looking very healthy and my clitoral hood is soft and pink and very healthy looking and I have no white spots, or shiny white membrane, no pain or itching. Everything is looking a lovely pinky, healthy and like new!
The regular steps I take to maintain myself are:
1.Refer to Nancy-K-B's blogs regarding Vitamins and Minerals and trace element supplement and also her detoxing of the body. I researched and found similar articles and discovered that, as soon as I started taking those listed, my body started healing. I also take a spoon of Brewer's Yeast powder everyday with my food. It’s a rich natural source of VitaminB’s.
2.Emuaid First Aid Ointment "Modern Homeopathic Medicine" is the most wonderful ointment - thank God I discovered this. Initially I used it every morning, every evening and everytime I went to the toilet. I apply it with the tip of a cotton bud (so go through heaps of cotton buds as you only ever dip the tip in the jar once so the ointment remains sterile). I like to use the cotton buds that have a paddle shape the one end and a pointy tip on the other end. Emuaid is very effective for treating Bacterial Vaginosis, Lichen Sclerosis, Lichen Nitidus, Lichen Planus and numerous other problems. It works, and works quickly to relieve symptoms and to heal. Once my ulcers had closed and healed along with the other areas I slowly and gradually with the pointy cotton bud tip started to apply pressure to regain my contouring and unfuse the labial skin and gradually stretched the cliteral hood skin. I spend a lot of time rubbing the Emuaid in to the entire area so it can soak deep into the skin layers to allow healing.As the areas healed I continued with the pointy end of the cotton bud applying pressure to stretch and infuse the skin. It all looks great now.
3.I use Eleuphrat 0.05% ointment (steroid) after applying the Emuaid - it mixes well with the Emuaid ointment which I believe helps it to penetrate deeper into the dermal layers of the affected areas. This steroid ointment is very strong and quite horrid so I only use a very small amount morning and night. Initially the gynae instructed me to use it morning and night for I would say at lease about the first 9 months. Now I only use the steroid ointment about 2 or 3 nights a week. I only wear cotton underwear. I wear the cotton undies at night also as I figured that the warmth will assist the ointments to penetrate deeper into the dermal layers.
4.I am 63 years old so am post menopausal. I also had vaginal atrophy. I was prescribed Ovestin hormonal cream to apply 3 times a week - so I use it Monday, Wednesday and Friday nights. When I use this cream I use Eleuphrat 0.05% cream as it mixes well with the Ovestin. I allow the Emuaid to soak in for a while first before using the Ovestin and Eleuphrat cream. I also apply some Ovestin and the Eleuphrat cream on the outer areas of the vagina, labia, cliteros, hood, the anus, and the area between the anus and vulva.
5.The opening to my vagina had become very small. As the skin areas healed and softened with the Eumaid and Eleuphrat I started gently to stretch it to dilate it. I used various size keggels - firstly starting with the smallest size and as the skin stretched I used larger sized keggels. I also do vaginal exercises with the keggels to strengthen the vaginal wall and also pelvic floor. It is important also that the hormones and blood flow reach these areas to keep them healthy, as it would at the time of climaxing. Orgasms are an important part of women’s vaginal health maintenance.
I find that with the anal area I get better results by using DermAid Soft 1% cream when required. The Eleuphrat seems to be too strong for it. The opening to the anus became deformed with weird looking things that look like long skin tags - I had these removed as they were uncomfortable and it was hard to clean myself. I also ensure that I don’t get constipated so drink plenty of water each day and from time to time take a few drops of Dulcolax at night to ensure that my motions are soft so I don’t have to strain or tear.
I do not eat sugar at all, any type of flour, wheat, cereals, dairy, minimal alcohol. I eat mainly fish, red meat (minimal), chicken, quinoa, steam vegetables or fresh vegetables and salads, coconut yogurt, coconut or almond milk and a variety of berries. This means I have 3 properly balanced meals a day with seeds / nuts in between as snacks. So basically no processed foods. I add a little apple cider vinegar in my drinking water also.
I found a doctor who specializes in woman’s problems and also in dermatology, which is great because he covers both areas of LS and I have a “one stop shop”, which is wonderful, as he understands this condition well. I have had the Mona Lisa Touch treatment and found it beneficial especially for post menopausal women as it promotes rejuvenation of the vagina walls. When I go for my next annual treatment he will also work on the areas of that were/are affected by LS as this promotes rejuvenation.
If I follow the lifestyle I have set out above , I am able to live a relatively symptom free lifestyle. I am able to enjoy pain free sex as long as I use a water based lubricant.
It is not worth deviating from this permanent lifestyle change as the symptoms of LS will return.
Exercise is also an important factor. I stay active by doing reformer Pilates, running on the treadmill and doing weights and also swim on a regular basis.
I hope I have been able to help you by sharing my experience of this LS journey with you and wish you well with your road to recovery. It is possible with determination and persistence. Good Luck.
nia45100 anna06268
Posted
hi ANNA, the little splits and itching really sounds like LS. what a crappy journey you've been on!
I get tearing in the same places as you and can really relate to 'feeling nervous about pooing'!
My doctor prescribed Elocon cream initially - the active ingredient is mometasone furoate 1mg/g. its quite strong so that was just for a few weeks, then on to Betnovate cream which is betamethasone 20micro-grams/g. These made a huge difference.
I also went to the naturopath. she helped me by putting me on to prebiotic acacia fibre and partially hydrolysed guar gum. Otherwise known as magic poo powders!
She also suggested I go gluten free. I was very sceptical about this but she insisted that gluten can inflame the immune response. So, sighing and rolling my eyes, I went g-free and holy mary, sweet mother of god, it really made a difference.
Finally, I use emu oil (smells gross but really awesome for skin conditions) to try to protect and moisturise the area. Sometimes I use Perrins Cream Complete instead. I use an aloe-based lube when my partner and I (gently) have sex.
Definitely speak to your doctor about LS. Many of them havent heard of it, but if theyre a good doctor they will research it.
All the best to you and your lady-parts
N
vickie00010 anna06268
Posted
I SO feel for u on this horrible journey...I always say finding the RIGHT doctor that knows and recognizes LS or any "issue" is the KEY...although there r so many different medications that u can be put on in so many different countries...here in the US. a hormone cream is many times prescribed (for dryness) and a a steroid cream is protocol for LS...from diet, to coconut cream or olive oil, to warm baths, to major lubrication during sex, just to name a few r all things that I have heard about on this forum...first and foremost u need to find out what u have and then begin a treatment....guess work will not work...wishing u good luck...
beverly52803 anna06268
Posted
Anna, you seem to be describing classic LS symptoms, some which I have experienced but in particular the buzzing feeling. I think one other person on this site beside myself has mentioned buzzing. I agree, it is an odd and confusing sensation. I have never had any itching although that seems the most common symptom.
Maybe doctors have been confused because of your age but there are rare cases of even children having it. Many women have a biopsy to confirm the condition. I did not as I saw a gyn who specialized in vulval skin issues and she was able to diagnose by sight.
You need to see either a gyn or a dermatologist who specializes in vulval skin conditions and who has dealt with LS in particular. You have learned through experience that most doctors are totally unfamiliar with this disease so don't waste any more time or money seeing a doctor who is not a specialist. You should also have your thyroid and hormone levels checked. Most of us with LS are past menopause but some are young like yourself. Sorry that you are going through this, but hopefully with a knowledgeable doctor who has experience treating the condition you will get it under control. Best of luck. Let us know how your next appt goes.
gini13 anna06268
Posted
hi Anna
I'm so sorry you are going through such a horrendous time . I recognise all your symptoms . I was eventually diagnosed with LS about 5 years ago now. I also suffered from the area around perineum turning white and growing together so that it disappeared altogether. I was prescribed steroid cream which just made it worse the skin became thinner and it made my skin bleed.
I have been symptom free now for 4 years.
I saw a herbalist English not Chinese . She had never treated LS before but within 3 months I was better and have never looked back. She said i had to get the right bacteria into my gut. I juiced 10 different vegetables every morning and cut out sugar . I took her mixture . I had salt baths and used Emuaid ( available on Amazon) to soothe the painful area. I had been unable to sit in a chair for months without being in pain, scared to go to loo,
I believe in alternative medicine but I think you must be very careful who you see. Research them carefully,
My skin has never grown back and it looks a bit strange down there but it doesnt matter. I am normal in every other way!
I hope this is helpful. wishing you lots of luck. x
beverly52803 gini13
Posted
gini, do you know what the herbal mixture consists of? I was given an herbal tea mix by an acupuncturist years ago that appeared to shrink fibroids discovered after menopause, but all she recommended when I told her about the LS was a Yin oil which is soothing but made no major changes.
Re the importance of the right bacteria in your gut I completely agree as I have successfully resolved what is labelled IBS since drinking a small glass of kefir daily. Any suggestions or medications doctors gave me were useless.
Do you still juice the vegetables daily? I am taking an expensive array of supplements but have not noticed any change. My symptoms are mild compared to what many are suffering through. No itching, just a chronic discomfort. I use both a hormone cream & now a med strength steroid (went from that to Clob and now back to the med).
I'm in the US and do not know of any herbalists. Does yours have any sort of certification that would be comparable to anything in the US?
Any info would be much appreciated. Thanks.
sarb73328 anna06268
Posted
Anna I am with Fiona and Beverly on this as regards symtpoms and maintenance. I am in UK so the products I mention are available here apart from Emuaid which you can get online. It does sound like LS and you need referral to a dermatologist or gynae. A good one will help you. I see dermatologist every 6months. (Not at the moment tho of course).
I am 66 and have had symptoms for 6 years. The buzzing is very familiar, as is itching. I have never had white patches and very luckily have never had splits but I have fusing which is very slowly getting worse.
However, do not despair. As others say this is managable and you will find a regime of your own in time. Emuaid is brilliant. Epiderm or Zeroderm for washing (use instead of soap) and dont rinse it off completely. You can use Epiderm for moisturising as well but I personally find it too greasy - it goes through your clothes and I have left patches on our sofas where I sit!! So for keeping moisturised all day, which is imperative, I use Emuaid or Cetraben ointment. I find it is so important to not let the skin dry out. I use Betnovate steroid ointment twice a week now but will apply it more frequently when I feel any itch or extra buzzing. I also use Ovestin oestrogen cream 3 times a week which really helps keep things supple - although you may not need that at your age. I have an understanding husband and we are able to have sex.
So make sure you get some steroid cream on prescription and use Emuaid or a good ointment. I found I 'got used' to Emuaid when using it a lot when i first discovered it and it stopped working for a while, so vary things when you can.
Take heart - good luck.
sarb73328
Posted
oh I left off Borax! Really helpful and soothing - it seems to soften the skin. Get it online. I swab with a solution most mornings and soak in it in a sitz bath once or twice a week. Make sure you get the right stuff tho.
brenda23819 anna06268
Posted
have you tried sitting in 1/2 cup of baking soda with a 1/2 cup of borax laundry soap in warm water for 20 minutes. i use a sitz bath . That should really help with the itching . also when you go to the dr ask about lichen being on your skin . Thats what happen to me my bottom healed up and now i have it all over my skin.
fiona08095 anna06268
Posted
Hi - my gynae and also my Holistic Medical Health Practitioner advised me not to douch or have a bath as it ends up drying out the mucous membranes as the ph levels. I was told just to rinse myself with plain water which i do.
anna06268
Posted
Thank you all for your helpful replies, I really appreciate your thoughts and advice. i've decided to upload some pictures too. So far i've never really noticed any white patches but as time has gone on i've really started to notice feeling increasingly 'dry' nearer the top of my vagina. To me its started looking very dry all over? although, there is still discharge inside. In the second picture you can see one of the little splits which had healed but is now opening again when I stretch the skin.
I had my telephone appointment on Tuesday, I wouldn't say it went great. I focused on really trying to relay to my Dr how badly this was affecting my mental health. She seems pretty bent now on the idea of Vulvodynia but I kept trying to say that I get physical symptoms like the splitting. She is going to write to me with my options but it sounds like its going to be taking some tablets or she mentioned an operation. I'm more scared than ever to be completely honest!
Do my pictures look familiar to anyone.