Information after visit to Vulvar specialist

Hi Morrell....Crisco shortening should be good for a skin suppler but I don't think I would like to ingest it....it contains butyl hydroquinone(TBHQ) an antioxidant made from.........petroleum!

thanks for that norma...was just getting interested since some oils have an oestrogenic affect. i'm guessing like me you go for - if you can't eat it don't apply it !?

No. I agree it's hardly a food at all.

Myself, I'd rather pay the extra money and use top quality oils. I paid a lot for a small bottle of jojoba oil, even more for a tiny bottle of pure frankincense and a little dropper bottle. I fill it with jojoba, add six drops of frankincense and drop it onto my finger to apply. I can only suspect that it's 50% responsible for my two released perineal adhesions and generally good vulval condition, along with six months of Protopic (switched off Dermovate).

Morrell, why did you switched from Dermovate to Protopic?  How often do you use the jojobaoil and Frankincense?  

No, not strictly aliee...I think petroleum is as good as anything for skin but not something I would what in the food that I eat.

Petroleum(vaseline)is a good moisturising barrier with a nil rating on the comedogenic scale.

Vaseline is so unglamorous so I like to try other skin care.

Coconut oil is quite high with a 4 comedogenic rating so it is not my preferred oil for skin but I do eat it.

Argan oil and jojoba oil are nice to use with added bonus of a good vitamin content.

My preferred oil at the moment is cold pressed avocado oil.

It isn't as commonly available as olive oil but I can get it from my local Sainsbury store and because it is food grade I also use it with food preparations.

I 

 

Judy, my gynaecologist wasn't satisfied with the continuing tears in my perineum after 18 months of Dermovate.

I use the jojoba/frankincense from once to a few times a day. The night I apply Protopic (every three days) I don't put anything else on top.

This pink area I have on my perineum is unlike the open wound of a tear. I'm regarding it as a released adhesion. I had a 'pleat' at the edge of my perineum unfold leaving a triangular pink area in the spring and it healed perfectly, so this is why I think the new one will do the same. It's a bit tender and I like to think that the Frankincense is helping it. Aside from reading young Liam's posts about it healing his LS, two of my 'herbal' friends keep it on hand for any skin irritations, so it's not a wild and crazy thing to use on skin. I seem to recall lots of shampoo/cosmetic TV ads that touted jojoba oil as a valuable ingredient (though they probably only included trace amounts so they could mention it). A tiny part of me keeps looking at this pink area and wonders if it could instead be squamous cell carcinoma. My gynae appointment is in November after she goes away for October. My mother had SCC on her neck – an open sore that came and went for years. It was cut out and now her neck is perfect. So I'm not worried. Just entertaining the possibility and not advertising what I've been using as The Answer.

Morrell, you seem so in touch with your body and what is gong on with it.   I am doing pretty good right now, but my specialist told me to keep a close eye on the perineum.  I am always irritated there and tears off and on.  I read that franincense is good for a lot of things including arthritis.  So I am going to start using it on my arthritis as well  Thanks for the info.  I knew about francincense, but had not read anything on it until I read your post.  Does the pink get any better...does it ever heal?  I am always red at the vaginal opening ...from the perineum into the opening.  It never completely heals.  It looks like a sore that lost it's scab.  I was a little worried about carcinoma.  But she thought it was the LS.  

Yeah, that's what my tear looks like. Usually my whole perineum is white. I was swimming in lakes here a lot this summer, so I was really keeping an eye on it. There seemed to be a ridge forming in the white skin and then it opened, making my perineum a bit less tight crosswise. I'm expecting it to heal like the triangular opened fold did. I don't think it's healing as fast. But it isn't painful like a tear this size would be, when even walking hurts and pee really stings. That's why I think it's a patch of new normal-ish skin.

Judy, like you and Morrel I have a lesion, in fact I had two but one seems to have healed over. The larger one right beside the vaginal opening and back into my labial area is the size of cigarette burn and slightly concave and has been there 10 years. Sometimes sore, sometimes not. This was actually the only reason I have been to doctors over the years. To a man (or woman) they have blamed my age and handed me oestrogen to compensate for the dryness and atrophy they saw.nobody ever took a biopsy. Only a year ago after my first flare I am guessing, when aching and burning arrived along with the lesion being unbearable was a biopsy taken and LS diagnosed. Reading these posts I believe I am not typical LS as I never had more than slight itch on the lesion sometimes, I never had white patches or thinning or cigarette paper skin and extending into other areas. What I do have is lost architecture, pain and burning over the whole perineal area, which actually looks pink and healthy. I only put the steroid on the lesion, maybe I should be putting it on the healthy looking but burning areas too! I have no ideas but what I get from here. I worry a lot about the lesion, I told my worries to my doctor three weeks ago that the lesion is a cancer and she said it tested for LS and you must stop stressing. It's hard to be confidant with a medical profession who missed my condition for 10 years and that's three gynaecologists and numerous doctors. I told one gyn 10 years ago I missed sex and she said you must just keep doing it, go through the pain and it will get easier each time! More oestrogen. At one time my whole labial area was plumped up so much I could hardly walk and then it started to split and bleed.

 I continue to stew about that lesion though ....

That is amazing..it sounds like you have discovered a treatment plan that really does work for you!

I can well understand  why you would find it hard to trust the medical profession.  I think in your shoes I would look for a second opinion, not because I think your lesion is cancerous, I dont, but because I think you need peace of mind and maybe a second opinion could give you that.

With regard to the areas that look pink and healthy but are burning, I would try putting some Clob on there, I think its worth seeing if the cream does its job, burning areas that you describe cannot be good, and must be terribly uncomfortable, and the cream might just stop it in its tracks.  Maybe try just a tiny bit twice a day, for a few days, I am of the view that if your going to treat it, treat it,  give it time to work, remember these are only suggestions, you must do what you feel happy with.    Are you happy with your doctor, what has she said about the areas that burn?  

Hi Lynne, I  know what you mean about the doctors.  I have had two doctors tell me the same thing, "the more you have sex the less it will hurt." I don't even remember how many years ago when the first one told me that. Women who are asymtematic of course are the ones who usually go a long time before they are diagnosed.  I never had much itching either.  When I first noticed the fusing, my gyn told me it was post-menopausal stuff going on....that was two yrs ago.  The tearing probaly has going on for about 10 also.  When we finally get diagnosed with LS we start putting things together and then come to the conclusion that we've had it for years. 

Thank you guppy, and Judy too for your feedback. 

Yes, I am going to see someone else, I decided the day after I saw a new gynaecologist who handed me clob and oestrogen and didn't give me time to ask many questions.  She didn't tell me how or where to apply the clob but was quite specific about applying the oestrogen to only a small  ridge which has formed across my vaginal opening. She was irritated when I brought up the lichen sites and when I tried to show her a letter I had printed from offline from a doctor with LS she nearly fell off her chair trying to back away. She wouldn't read it, she wouldn't accept it.

As for my own doctor, I am the only case which she has seen and judging by the dreadful experience I had when she did a biopsy, (non dissolving sutures, infection in two of them, leaving them in for 10 days and taking them out without local and each stitch taking minutes to remove) the only biopsy 'down under' she had ever done.  Any questions I have she says go back to your gynae, she is the one to ask.  *sigh*

So I searched for a dermatologist specialist in vulval health and found one an hour away in a much bigger city. Had to get a referral and now am waiting for appointment.  Yippee I say! 

I will take your advice and put some clob very thinly over my burning area. Would I rub it in as I do with my lesion?  I spend 60 secs rubbing that in as was advised (on line!) that LS comes from the deeper layers of the skin and surface light rubbing won't get it down there. Honestly, I feel for every woman who has no access to proper medical help or doesn't know about these sites! 

I should add that I am fortunate I think in that walking is comfortable enough for me, but sitting, car journeys etc ouch ouch. And am not disturbed at night as I have no itching. So have to look on the bright side 😀

Hi Lynne, it sounds like you have had a terrible time with doctors, and so its good that you are looking elsewhere. With regard to the cream, it does need to be rubbed in well, apparently it absorbs better if you can do that after a bath.  I noticed you mentioned that you had a small ridge which has formed across the vaginal opening..I have that too!! its what makes sex painful, even before penetration, it must be a symptom of Lichen Schlerosus I think.   

Mine is in the six oclock position at the very bottom to the entrance of my Vjay, its really just like a tight band of skin going across, I wonder how many other women have this?  because this is what causes a lot of pain with sex..

Yes Guppy, that's exactly where it is! A tight band describes it well. After 8 weeks of every 2nd day oestrogen I can feel a slight loosening of this band, I will keep it up. It's a tiny amount and applied JUST across it and slightly up inside across the vaginal opening. It's awkward as I have to put it the back of my fingertip to apply due to me not being double jointed or a contortionist. :-)

Yes I have it, and it is painful with sex. I tear right around there and inside the vagianl where the lesions are.  

I can't thank you enough for describing symptoms and issues. I sincerely thought I was loosing my mind or at the very least imagining what I was feeling. In all the research and reading this is the first mention of the "ridge" and tearing that are so very painful. Waiting for appointments is agonizing and having a place to discuss things has lightened the anxiety tremendously.

Lynne, Judy, what actually makes this area so problematic is that it is not just a band of skin that stretches across, although at first glance it appears to be so...because behind that band of skin, inside the Vjay there is a kind of " pocket area"  underneath, which means its extremely vulnerable and prone to catch very easily, and so this is what can make sex difficult and painfull, if its caught, which is exactly what happened to me recently, afterwards I was in a lot of pain, for days actually, and that was even before penetration, which we immediately had to abandon! 

Incidentally, if you think you have this problem, sex with a condom (rubber) would be excruciating I would imagine, even with lubrication.  There are ways of getting around this problem, but understanding it helps, it explains a  lot.

The ridge – that tight band across the front of the vjay – has been the worst thing in terms of pleasure. There used to be this lovely smooth path from the clitoris down the rabbit hole and now there's this horrible speed bump, tender like the band under our tongue.

The ridge in the white skin of my perineum was very subtle, but it seemed to be a sign of a fold – an adhesion – and that was what opened.

Do you think its likely that most women with LS have this band of skin? Unfortunately I see it literally as a "road block" to sex.

It's a road block complete with flashing lights and sirens. Have to laugh at it at this point because if we don't it will be an even bigger struggle. So.... crisco it is. My husband is a real trooper and listened to my somewhat rambling and excited explanation about this group of gals sharing information that sounded just like what we're going through and they have IDEAS! And please forgive my rambling but I am so stunned that you're even describing things the same way I had when I was trying to tell him how it felt and while he was trying to explain the changes he noticed to me.

I have read about it – stenosis. Basically narrowing of the introitus due to scarring. Sucks to be us.

I see..thanks,  I will take a look at stenosis later on today.   

Vicky, Yes, its good to share information.   I think I mentioned in an earlier  post that there are ways around this particular problem.   I have found that it is possible to maneuver oneself into the right position to avoid that particular area we are talking about. Last time sex for me was a disaster, but really, it was more of an accident, as I have had sex without it being full of drama and pain, but it just takes a bit of work on both sides, and you have to go slowly, carefully,  and use something to ensure that your butt is raised up and is not buried somewhere in a cushion....I think you probably get the idea.

Thank you. It's been frustrating to say the least. Added extra pillows and he even took the initiative to buy a firmer mattress. Drives me crazy sometimes but then he does something sweet. A man voluntarily shopping for a mattress without being asked. It's a miracle. Lol

Dear Vicky and all the ladies in this forum.  It is so nice to have the support of all of you, as this disease is something no one knows much about.  My dear husband had prostate cancer, prostate taken out, so sex has been gone "by by" for 18 years.  I'm glad I don't have to deal with it now with the LS...but I am 73 yrs old so sex is no longer a priority.  I'm still using the clob and cornstarch and keeping it under control.  

It's a blessed thing to have moved on to a stage where love and being together are as special as making love. We have been married 28 years so it's not the first priority for us either. It's still there don't get me wrong. But a night of cuddling and snuggling and connecting that was can be very satifying indeed.

That's lovely vicky!

Glad to know you too! Glad things are well balanced in your relationship.

dear lynne, I am very upset for you that you were treated like that. so sorry.

It does seem to be quite common. You deserve better and I add my voice of support! 

Your not wrong there! ha ha

Jeri, Are you the lady in Dubai ? I lived there for four years, before moving to where I am now, its brutally hot there isnt it?  Glad the cornstarch is working for you.

Hi Guppy, I think the lady in Dubai was Morrell...not sure.  I live in a small town in Northern California.  I think the ladies on this forum are from all over, some in the UK and some from USA.  I'm thankful that I am not a young woman with LS...would be very hard on the sex life for sure.  Hope you are doing well.

Ah! no worries, and you are correct we are from all over the world...

Not me, never been to Dubai, happy to say.

It was Justine!

Ah! I knew it wasnt Morrell, as I can remember her mentioning once where she lived..

Canada.

Ah Yes, that was the place!, beautiful Country!