Symptomless LS but loss of parts

Just replying so that you know I'm still with you. Happy to share anything I can with you but at the moment have nothing constructive to add. I did tell my very best friend about it and then on a subsequent meeting she said 'oh do you know one of my lips is a tiny bit shorter than the other now due to the menopause'. And I commiserated. Because I was speechless otherwise. I really thought I'd conveyed and she had taken on board how it was for me down there. But short of showing her.... and I draw the line at that. Anyhow keep in touch Mousy.

Hi Chrissy, I suspect I may have had LS for sometime but didn't realise anything was wrong other than slight irritation so changed washing detergent thinking that might be the cause. Didn't alter anything so thought it may be reaction to man made fabrics so changed to white cotton briefs. I realised I had a bigger problem when sexual activity began to make me sore and caused a tear (something that had never happened before).That tear took ages to heal.I examined myself and saw the typical white patches. Not having a clue what was wrong I searched the internet for clues and up popped LS. Not previously known anything about LS,I went to my GP armed with what I now knew. He examined me and agreed with me then made an appointment for me to see a consultant gyno. I had a biopsy that proved positive. This has only been confirmed recently. I told my daughter who didn't seem to understand then told a close friend who looked at me blankly and didn't know how to react. I told my sister who didn't know what to make of it. This lack of awareness amongst females that are close to me makes me feel isolated and I am now wondering who the other suffers are as in all my 71 years no on has ever spoken about it. The only connections I can make about this disease is on the internet.

I have never had any itching but my right labia minor seems to have more whitened skin and some receding. I commented to my GP, why are women not made aware of vulva disorders and encouraged to self examine the vulva when we are told to attend for smear tests and self examine breasts. I feel sure LS is not as uncommon as is claimed because it is not given the awareness  that's needed and do some sufferers remain silent like they did when cancer was not spoken about. If LS was talked about freely then potential suffers have a better chance of diagnosing sooner rather than later. Just needed to throw in a little frustrated rant there. I guess we sufferers can feel frustrated from time to time by the lack of solid help and having to turn to one another on forums for help and support.

You're singing my song, Norma. My theory is that gynaecologists are generally focused on what's inside and dermatologists never ask us to take our panties off. I talked about it with my sister, mother and a few women friends. One of my friends has LS and atrophy to the point where even the smallest speculum hurts.

At least we have each other here. After two years since my way-too-late diagnosis being on here the whole time I agree, LS is probably a lot more common than doctors believe.

Hi Morrell, Yes it seems that some GPs toss a coin whether to send one to a gyn. or derm. as they call it a cross over issue. That puts us in a grey area so who is going to give our problem full attention when they can't decide who's responsibility we are. It's obvious from some of the forum posts that a lot of us do not get adequate information or instruction. There needs to be much more awareness about LS for as long as it is considered an uncommon disease,pharmacutical firms are not going to put much money into research. They are more interested in high profile disorders as that is where the profits are for them. I guess as yet we will have to rely on one another for support. I am working on the low hormone theory. I believe an under par endocrine system plays a big part and hypothyroidism affected by the endocrine system is a common connection to LS. A knock on effect may involve the immune system. As an example stress stimulates the endocrine adrenal glands to produce cortisone and if cortisone becomes low the adrenal glands use progesterone causing low levels of progesterone also progesterone is a pre-curser to estrogen. It is important to have adequate and balanced hormones for a healthy vulva. I am trying to calm the adrenal glands approach by avoiding all stimulants-- coffee, alcohol, sugar, carbs that produce sugar in the body and of course the all important stress factor. I also try to have a clean healthy diet to support the immune system as 80% of the immune system is in the digetive system. Medication and moisturisers play their part but they only help to calm and mask the core problem.I don't know anthing for sure but I like to try anything that may help internally without relying totally on medication. All I can say with this approach is my LS has not progressed ,I have never itched but the soreness I had has gone with the help of an emollient moisturiser and no steroid use as yet. The gyn. did say the good news was I didn't have any ulcers thickening or fusing and I am working hard to keep it that way. I don't know if I am using the right aproach or how things will eventually pan out but if the LS does not get any worse I will be happy with that and I don't think my regime will do me any harm. I would like to think we will get more acknowledgement from the medical profession but until then we will hopefully continue to support one another      

Norma, your approach is exactly the one I took when I read about adrenal fatigue after decades using cortisone creams for psoriasis. And I was post-menopausal refusing hr. I pushed through the year of rebound flareup, which was extreme. When I was diagnosed with LS at age 61 it was progressing scary fast, so I was afraid to refuse the clobetasol and anyway I would be using so little, and on so few square inches of skin, I just resigned myself. I drink coffee and not a lot of alcohol. I'm moderately satisfied that the drugs (tacrolimu for six months now - not clobetasol) are responsible for my relative stability. I read what yong Liam wrote the other day about his success with a few drops of 100 % frankincense in jojoba oil. This was quite expensive ($33 for the essential oil of F and less for a small bottle of jojoba oil. I bought a litte dropper bottle to try half full of jojoba with three drops of frankincense. This mixture feels very nice on my healing perineum fissure. A number members here have expressed concern about becoming sensitized to coconut oil, so I figure its good to switch moisturizing routines now and then, even if that's all this mixture really is.

Agreed that we fall into the cracks due to the medical profession's focus on specialization in body parts. I think there should be doctors who specialize in autoimmune conditions as so often people have more than one.

The lack of research is also problematic. Unfortunately I think it is up to those with LS to take on the awareness and who wants to make the Disappearing Clit awareness campaign their life's work? Some days I think I would and then other days, I would like to be able to take a vacation from thinking about my vagina.

My approach is to see both a gynaecologist and a dermatologist. While I have a good GP who specializes in women's health and a gynaecologist, I am trying to have as many eyes looking at me as possible. As I have lichen planus and a family history of skin cancer, I have asked my GP for a referral to a dermatologist. If they won't look at my vulva for the LS, I will keep moving on until I find one who will. I am not able to get into the vulvar clinic for another 9 months.

The only reason I am now receiving good treatment now is because I found this forum, realized that my doctor was in over her head and took it upon myself to get better care. Many women shop around for service providers like a hairstylist, why would one simply accept a doctor even if they felt they weren't getting good care?

Hi Ellef, I feel your frustration.  Did take both GP and GYN. to task concerning the lack of awareness given to women especially when we are  given other issues to be self aware about. The response I got was a knowing look but little else in the way of my comments changing anything. My intention is to speak to the practse nurse who I will be seeing this week as she deals with smear testing and could mention it to her patients at the same time. I certainly have had no problem with my GP or GYN assessing a vulva examination. From seeing my GP, referral,seeing my GYN, the biopsy and results took in all about 2 months. Ihave been given another appointment to see my GYN in 6 months time. Your GYN clinic wait seems a long time!   

I like your approach. Ive just went to get some Phyto oestrogen cream, but they didnt have any, so cam ehome with flax seed oil - 1.5T/day.

 

What is the Phyto Oestrogen cream for?

Yes, my wait time is ridiculous. I've tried getting a new doctor to say I'm more severe, but to no avail.

Hi Ienep, Have you had a hormone test done? I am considering asking my GP if I can have my hormone levels tested. I am reluctant to use hormone creams without knowing what my levels are. I am postmenopausal and its possible my levels are too low. I know a lot of women use estrogen cream without knowing if they are using the correct hormone. After menopause progesterone falls quite a lot and  estrogens in the enviorentment along with various products can cause estrogen dominance so to use an estrogen cream can make matters worse. Low progesterone effects the immune system and thyroid funtion of which both have been connected to LS. I prefer to use food rather than creams as I think it is safer. At the moment I am avoiding estrogen foods and eating foods to promote progesterone. Meats, seafood, pumpkin seeds and bananas (food containing vit.b and zinc). Progesterone is produced by the adrenal gland and if stress depletes cortisone the adrenals use progesterone. So it is important to try and avoid stress. Progesterone is a precursor to estrogen and helps to balance hormone levels. Of course all of this may make no difference at all if my endocrine system is way out of whack but I can't just feel sorry for myself and do nothing. Hope you are able to find something to help your situation.

Only just recieved this post Morrel, don't know why it has been held back for 22 hours!

On the first visit to my gyn. I told him I had been on hrt for 17 years and  off it for 6 years. I asked him had the use of hrt any connection to LS. He didn't give a satisfactory answer.He said it was no point blaming hrt and I could have had LS whils't taking hrt. I was a bit gob smacked to think I could have had LS all that time and not know about it. I still have niggling thoughts that hrt may have disrupted my endocrine system and any natural homones I produce. In the early days hrt was looked at as a long term treatment but now it is recommend for 2 years and no longer than 5 years. Sometimes we have got to fall back on prescribed treatment when other efforts fail. I take high bloodpressure medication after all other approaches failed to bring it down. Bloodpressure is another endocrine disfunction. It makes one wonder about what side effects may be taking place with prescribed medications. I am a bit anti-drugs now so if I have to resort to prescibed medication it is forced medicine.   

 

I don't know why my post went to moderation, some keyword. Anyway, I'm lucky the ointment is the only medication I have to use. I tried premarin cream for LS when I was first diagnosed, but even the smallest amount throws me into depression. The Pill did the same thing. Norma, this is all very interesting about progesterone.

Hi Morrel, I could be completely barking up the wrong tree but I believe hormone inbalance is a trigger for a lot of ills. I feel safe experimenting with food but steroid hormone creams are a no no for me. Without  proper testing to know which and what levels may be unbalanced self diagnosing is a bit iffy and could do more harm than good. Sometimes I make a solution of diluted sea salt with strained liquid from a tea made from thyme or oregena (progesterone herbs) and use it as a soak in a portable bidet. It gives a soothing fresh feeling to the neather regions. I'll give anything a try if I think it is safe.   

Exactly my thinking. Everything besides my basic prescribed ointment (tacrolimus now, but I'm going to ask my gynae in the fall whether cycling between Dermovate and tacrolimus might be worth trying) has to be about soothing the skin and building up my guts. I have a veggie garden with berries. I'm experimenting with different oils, since so many women have experienced sensitization to coconut oil after using it for awhile.

Hey Norma, I must admit I mainly went to get the phyto oestrogen because someone was using it (here on this website). I am probably a bit all over the place trying to find a miracle cure.I guess you also run the risk of mixing all and everything up, so I'll have no idea what works and doesnt work.

I have come to the conslusion though that strees must be a major factor. It s a major factor in everything else, so why not LS too?

Im not in menopause yet - although probably not far away. (49yrs).

Some interesting points you have re hormones aswell.

I do believe I live a pretty good lifestyle with lots of good food, lots of sleep and loits of excercise. I better try and add lots of sex to the list now as well. it seems to be a good idea.

I have been stressing in the last few years - relationship issues - ironic really as its to do with husband/other women etc.

Also something else Ive noticed. I could be slighly weird.. is I dont seem to have a"smell" anymore. You know what I mean - the vagina has a certain smell and now there just no smell - just nothing- has anyone experienced that as well?

Im still using the steroid - havent finished my first six weeks yet - twice a day and then the Hope relief cream in between. No baking soda baths, now flax seed oil to balance the immune system, good food, Ill cut down on sugar. Dont drink much.

Hard to avoid the stress when yu're stressing about LS..

Yeah, stress is a major factor. And most of us either freak out or get depressed or both after diagnosis. The sooner you get past that stage the better. I solved my stressful relationship troubles – I'm single again!

Yea, your dead right. Sometimes being single sounds like the best option. On the dark days, I'm thinking..single, three kids and half a clitoris. 😊😊😊

Sounds good to me Morell, I grow various produce myself. Fruit trees,berries,herbs and a bit of salad stuff.

I dumped pastuerised milk some time ago and get raw milk, cream  and eggs from a local organic farm. I make blabber milk a probiotic drink that sets to a yogurt if left for longer.It can only be made from raw milk not pasteurised.I make my own butter from the cream. I haven't alway been so health conscious having been as indulgent as the next person but I have improved my life style a lot over recent years. I use coconut oil for cooking and tried it in the vulva area but not the best for me. I use dermol lotion, I find that ok and it soaks in as well as a protective film.

Hi lenep, Mid life is a stressful time for women when relationships put a lot of pressure on us. If it is not the other half then it is aging parents or offspring making demands, whils't looking after a job and a home. Then along comes mother nature throwing her twopennies worth in with the menopause. It all takes it's toll on one's well being. Looking back during that phase I was stretched like a piece of tight elastic for a several years feeling the weight of other peoples expectations from me. Look after the adrenal glands and don't let relationships take too bit of a bite out of you.

I get milk to make yogurt from a small local organic dairy. Any meat I buy is also from this kind of small local producer.

Hi again Morrell. Just been in touch with my doctor's surgery. The letter from gyn. has arrived there today. It states I will be seen at his clinic 6 monthly and he has instucted prescription for Dermovate. As to how I use it, he has written use it once a day when neccessary! What does that mean! At the moment I have no irritation and no itching but I do have the white patches.I have read quite a few post where suffers with LS are diagnosed then prescribed the going treatment without proper instruction on how when and where to use it." When neccessary" seems a bit vague to me. I pick the Dermovate ointment up in two days time. Do I still use it even though I am not sore or itch! Not sure what I am going to do with it.   

Norma, the white patch is LS and needs treatment. Most of us receive instructions to use it daily for a while, then maybe every other day for awhile, then finally twice a week forever — at least weekly. If I were you I would ask to speak with the pharmacist. They know so much more about meds than doctors do. It can take many months to work, up to two years. I think some doctors do treat it as symptom relief, but it's not really very effective for that.

Thanks for advice Morrell, I am feeling a bit frustrated at the moment. Although I have had the diagnosis I don't feel the back up support is adequate. Too get a prescription with vague usage directions is irritating. It seems that we suffers get more support from one another. Your suggestion of speaking to a pharmacist is a good idea and I believe a lot of people have more faith in a pharmacist than a doctor. Thanks again.

How familiar is your frustration about the support one receives following a diagnosis! Anyway i didnt use the Demovate, (only the moisturiser,) when I didnt itch or was not inflammed - when I looked a few months later I was horrified at the silent fusing that had occured.

So now on alternate days I use a pea sized amount over the clitoris and fused edged of the labia, and IF i do have a small tear irritation or itch there too. Occasionally I will apply it to the area above the anus if I get a sweat rash from sitting too long in warm weather - (and use the canestan cream there too) I dont have white patches nor the palor on my undercarraige that is frequently described

I also ALWAYS wash my hands after applying the ointment as I dont wast to thin the skin of my finger tip

On the days I dont use the Dermovate I  use Diprobase - I am in the UK - a moisturising soothing cream - I also apply that 20 mins or more after the dermovate, and after a trip to the loo

I have on occasion not had the potions with me  when away from home- The Itch Returns!! very swiftly

Hope that helps a bit

Yes it has helped, thanks suedm. I've tried hard not to get anxious about my situation but it is getting the better of me at the moment. I am also in UK. The only thing the gyn said after diagnosis was treatment is with a steroid cream but it doesn't reverse anything. So from what you discribe it is to stop any advancement. Everyone seems to have varying symptoms.I have never had an itch but have felt sore although not for a while since using Dermol to moisturise. I don't appear to have worsened since discovering the white areas a few months ago. Gyn said at the time of examination the good news is I have no ulcers,no thickening and no fusing. I am assuming the advice is to use the Dermovate to stop this from happening. Why gyn. and doc. can't be more explicit! It would be far more informative and helpful than the basic..."Your biopsy is positive and I will send a letter to your doctor"....I have made an appointment at my doctor's for Tuesday to see if he can be more informative as I think the instruction to use daily when neccessary is a bit poor.I have used Coconut oil, Emu oil, Aquafor and vaseline but I am using Dermol now, as a soap substitute and moisturiser I prefer Dermol it soaks in better than the other things I have tried and leaves a protective film. I was tempted not to use the Dermovate as I am not sore or itch but the thought of other things happening is scary if I don't. It's the fiddling about with which bits to do or leave that going to be a nuisance.

Oh well gotta soldier on.  

No matter what the doctor said I will be surprised if the Dermovate prescription label doesn't have our standard graduated use regime on it. Pharmacists don't know more than doctors, they just know more about DRUGS than doctors.

I haven't seen the doctor yet. It was his receptionist who showed me the letter the gyn. sent and the scant details for the prescription written at the bottom of the letter. The receptionist has told me the prescription will be at the pharmacy Thursday so I will find out  what the details are on the prescription when I pick it up. Officially I have not been referred back to my doctor so should really clarify usage with my gyn but  I have an appointment with my doctor next Tuesday for another issue so I will bring it up with him and see what he says.   

If you haven't already do watch Dr Goldsteins webinar - it will explain a lot and you will have more information than your GP - so do take the  web address along to the practice and talk to the practice  nurses too

The lecture has slides so it is useful to screen save if possible - best on a desk top or a lap top  rather than a tablet if you want to save the slides for reference - wheich i found of use.

The fear of the steroid will be substantially reduced once you have watched Dr Goldsteins address- it is set so that clinician and  lay people can understand  the issues involved in LS - go to New to LS  - the address is there

Take care and do try not to fret. Mindfulness training is All The Thing these days - try it!

Sue

Thanks so much sudem, I did have a quick glance at Dr. Goldsteins presentation a few days ago. I promised myself that I will watch the full presentation very soon and try to absorb all I can. I am a bit wobbly at the moment as I have another agenda running along with LS. I go to a breast clinic tomorrow for investigation of a lump in my right breast. Strangely I am not dwelling on that but I am finding it harder to get my head around LS. I am seeing the practice nurse today for a blood test so I will chat to her about it. Yes, I am aware of mindfulness training and I'm sure it helps some but I can't see me doing it as I get bored with nothingness. I like to keep my mind more active The thing is to remind myself to be positive active and not be negative in my thoughts and actions.

Cheers.

Norma.

P.S. I like the word "webinar"  I must use it sometime.   

Norma, ten years when I was a hardcore Buddhist I would have argued that mindfulness practice has nothing to do with nothi9ngness, but there's a reason I now do needlework and knitting to calm my mind. I am still in the habit of keeping a close eye on myinner weather, though. But the mind does have a mind of its own, as the song says. Let's hope the breast lump is nothing.

Wow it comes to you in buckets at the moment. Hopefully the lump is just a cyst- i have had a couple  drained- not too much fun but better than the alternative, so try not to worry too much

I find being with fun people, walking, water colours and taking up croquet are Good Ways of taking my mind off me and my "woes" Gardening too helps but that is on my own and that is when the mind races. Occ I mention that I am sitting on hot coals to friends but I get a blank look..... so seldom do these days......and get out the Dermovate instead. Sit down with a nice cup or glass of something a note pad and watch the webinar- not my terminology sadly

A piece of advice i was given years ago, make an appointment with your self on a regular basis. Treat it like an appointment with a stranger or work colleague, meaning that IF you HAVE to cancel a given date or time rearrange it. Use this time  for YOU exclusively, hair /nails /massage/beauty parlour/ window shopping /walking /reading - whatever it takes for you to unwind and enjoy yourself without feeling guilty. You have a busy life and that increases the stress levels. So be kind to yourself and have a therapeutic period at least every week if not every day

Good luck and take care Sue

I was told that a sudden change in female hormone levels could be a contributory factor in LS

I have been on HRT for nearly 30 years - i had the menache at 8 years old and had a very early menopause too, but that could have been as i was put on a high dose of male hormone in my 30's as i had an ovarian cyst which was reduced chemically as i had a lot of adhesions from mucky caesarsx2 and a sterilistation(i had had a burst abdomen following first caesar, being a bleeder- a red head and no deep tension sutures!)

I am convinced the change in hormone levels contributed to my diagnosis as i was rapidly withdrawn from HRT a year before I had symptoms or fusing at an extremely stressful period in my life. I was returned back onto HRT when i sought advice from another gynaecologist.

sue I am so with you on the HRT thoughts. I asked the gyn. if HRT might have had any influence on LS. He said to me that there was no point in blaming HRT. How will they connect any common denominator concerning LS with that attitude.

I like you are convinced hormone changes disrupt the endocrine system and more so if synthetic hormones as in birth control pills and HRT are used long term.

I was on HRT for 17yrs, and it was a great with none of the awful symptoms of menopause I had experienced but since stopping things have taken a change for the worse. It's as if my body has been recieving a drug that has been withdrawn so it is now rebelling.

I don't think our bodies can reajust  because synthetic hormones have been over riding our natural system for so long.

30yrs. is a long time to take HRT sue and it seems you have had your share of problems.

Myself I have always been fairly fit and active although it seems to be going belly up at the moment.

Like you sue, I have got hormones stuck in my head as the guilty party.

Take care.  

 

Thanks for your good wshes sue but until I get told otherwise my bosom buddy is nothing more than a cyst. I don't really worry unless I have a positive to worry about. I'll adapt to LS once I feel like I know what I have to do. Had a chat with practice nurse today about LS and feel a lot better for that. Now that hubby and I are retired life is much more relaxed and stress free unlike middle age years when I felt the pressure stress regularly for various reasons but I can't blame stress these days. I have a caring husband who is a good support and does what he can to keep me happy. Nope, can't put blame on my life style, it's got to be those damn hormones.  

Thanks Morrell, The best lump is not going to bother me unless it turns out to be something to bother about. I have never been hardcore anything regarding religions. I have to confess I am an atheist so don't follow any religion but I like to think I have decent morals. Everybody to there own I say and whatever makes one feel content. Being a farmer's daughter, I am a country girl at heart and I love nothing more than getting out into the lovely countryside around my home with my dog. I can really switch off when I am in touch with nature.

Keep smiling

Norma

Yeah, that's my other pacifier. I live in the bush and love to garden.