Everything fused
Posted , 9 users are following.
Hi, this is the first time I've had the guts to post, although I've been following messages for some time now.
I'm 48 yrs and my LS has got worse in past 6 months. I noticed that everything has fused up so now there is no clear definition between any of my labia and clitoris. It's permanently itchy and sore.
I've got the steroid creams and emollient but I don't seem to keep control over it unless I use steroids every day.
I feel really down about it all as my sex life is almost non existent. I can't enjoy intimacy with my husband any more. I do it for him as I know I'll have days of pain and discomfort afterwards. The worst thing is this is such lonely disease as you can't discuss it with anyone! I'm also really worried as I've got to switch HRT as the treatment I am currently taking has been discontinued. Last time my HRT was switched I got a huge flare up of my symptoms.
I'm messaging as I feel so alone with this condition.
thanks
0 likes, 16 replies
sally41666 ginny00059
Posted
Im so sorry to hear things are so bad for you- Im sure youve tried all the treatments and i can only imagine how you must be suffering!
Please know that there are others who feel the same and can offer support whenever you need it!
I actually feel lucky that Im single as it must be truly agonising to loose the intimacy with someone you love!
Take care
Sally
SnappyCat ginny00059
Posted
Ginny,
Sounds to me like you've got some sort of vicious circle going on. I think I had similar recently. Here's what my dermatologist directed. I did it and so far, so go. Maybe it will give you some ideas:
All the while, if you have any itching, use Nystatin or Clotrimosole WITH the steroid (she said do it once a day for a week, then only as needed and that worked for me). I found that the itching was a yeast on the outside as a result of the steroid. If I was having the itching, I used coconut oil instead of vaseline. The vaseline is a much better barrier, but it can contributed to the yeast, apparently, and the coconut actually has some anti-yeast properties.
Also, concurrent with all of this, I take an AZO cranberry pill every morning. At the slightest hint of UTI issue, I double that. I got UTI at the beginning of my spiral, and now am religous about a) no double-dipping into my vaseline or coconut oil pot. b) don't use same finger for front and back. etc.
Sorry about the fusing. I have a little fuse on one side and it started on the other side, but I caught it immediately and pulled it apart (ouch!) and it has stayed fine. I have this little personal theory that the fusing is related to heat. Try to cool it off as you can, spray bottles etc.
I think the key is to try to figure out if the itching is the LS or something else...for me, that something else is external yeast.
Guest SnappyCat
Posted
Snappy, Am interested in your idea about heat bringing on the fusing. So the labia hurt when you pulled it from the other one? (not that I wouldn't expect it to).
thanks
biscuit
SnappyCat Guest
Posted
OK...so, here's what happened.
Sese88 SnappyCat
Posted
i cant believe how fast the left side fused!
SnappyCat Sese88
Posted
me either...lesson for me is check it every day, BUT ESPECIALLY, if you are sick...
jane08222 ginny00059
Posted
I am sorry you are having such severe problems. You are not alone. This vicious auto immune disease affects each of us differently. Your mental outlook will improve with improvement in the LS problems.
Sometimes steroid ointment seems to make things worse. I have found that during flare ups if I rub the ointment in it is more effective and causes less problems. A less harsh approach is to alternate using Cortisone 10 ointment. Use only the ointment, as the creams have alcohol in them and cause burning.
Wear only 100 % cotton underwear (Jockey brand is awesome). I change mine 2x a day. Use a medical squirt bottle with warm water to cleanse after each void and then use a barrier ointment on the area. I use Emuaid, or coconut oil EVERY time I void.
A shower wand helps greatly in cleansing daily, and know that most soaps will irritate....Dove for sensitive skin works for many of us.
During a flare up, I try to wear loose fitting clothing, preferably not pants around the house.
I wear a low dose (0.025) HRT patch.. have added Vit. D and magnesium to my daily vitamins.
You could try eating gluten free, and cutting out sugar from your diet.
I stay away from hot tubs, pools, don't ride bikes or do other things that cause irritation.
Use wool balls in your dryer instead of dryer sheets (they contain fiberglass !) and a detergent like Dreft, Ivory or one of the ones that is pure.
Hoping some of these suggestions will help you.
Guest jane08222
Posted
Dryer sheets have fiberglass? Oh now that's not a good sign at all. Got to look that up now.
beverly52803 Guest
Posted
Use clean tennis balls or the rubber ones they actually sell as dryer balls to fluff up your laundry. I'm not sure about the fiberglass, but nothing would surprise me. I don't use the sheets because I can't stand the overly perfumed smell. Some make me gag, but that may be because of the following info.
Many dryer sheets contain chemicals that react with the air to create formaldehyde, a probable human carcinogen. Other common dryer sheet pollutants include acetaldehyde and benzene, things also found in vehicle exhaust that are not considered safe at any level.
Not to mention you won't be spending money on dryer sheets.
Guest beverly52803
Posted
Yes! Thank you. Going to give mine away or throw out....Had forgotten about dryer sheets.....But, have used them for years w/o obvious problem but the more chemicals you get rid of, the better off you are. Now, another thing my doc said was to get rid of wifi. That's nearly impossible nowawdays but, since many of us sit with the laptop so much it does make me realize I need to investigate it some more.
beverly52803 Guest
Posted
Which doctor was this...the gynecologist? Sounds more like advice an FM practitioner might give. Is there anything we are not being bombarded with 24 hrs a day? Not likely. How about all the cell phone usage? All people think of is "progress" (meaning convenience mostly) and the killing they will make selling it. I think safety comes well after the fact, if at all. If anything companies will lie through their teeth denying their products are hurting anyone (think tobacco). But we all have lived pretty long in the grand scheme of things. When our time does come we may have grown tails in our necks and deformed genitals, but as they say you can't stop progress!
beverly52803 ginny00059
Posted
Ginny, you have my sympathy along with everyone else's I'm sure. All I can add to the suggestions is to look into platelet rich plasma injections (PRP). It may involve a long search but there are MD's who do it. I found one in New Hampshire (('m in the US)). She said she would not advise that I have it because I was NOT in BAD enough shape, oddly enough. From what I can determine it can actually reverse damage. Makes sense to me to get it before my body deteriorates, so I am still contemplating it, despite what the MD said.
Don't give up. I'm convinced there are solutions or at least ways to control it.
I'm sure you are very stressed but unfortunately that is bad for anyone's health. Try whatever you can to lift your spirits. Go to the web for meditation videos, watch funny movies, spend time in nature. Just chill and try to take the focus away from the disease. You need endorphins to counterbalance all the stress.
If you've been reading posts for a while you know there are a lot of us and everyone is trying whatever we can. We get discouraged, encouraged, inspired, fed up...but we are all hanging in.
How long have you had LS? Are you seeing specialists?
ginny00059 beverly52803
Posted
I had it really badly as a child but didn't know what it was, puberty seemed to improve it and then late 30s I had a really difficult child birth resulting in a bladder and rectal prolapse and had an episiotomy. It was after then that a urologist noticed the colour of the vulva skin was odd but didn't diagnose LS. It was 8 years later that I noticed fusing and had flare ups of open sores that I diagnosed myself and asked my doctor to refer me to gynaecologist and they confirmed my diagnosis. The gynaecologist referred me to a gynaecological dermatologist 18 months ago. Now I realise what I had as a child was LS but at the time it was never diagnosed.
beverly52803 ginny00059
Posted
Ginny, what you say about improvement coming with the onset of puberty's estrogen is what I have read, Also your experience with childbirth resulting in an episiotomy also supports the theory of trauma bringing it on. It's fair to say you're heading for menopause and your estrogen levels are dropping. Were you recently put on HRT because of your age or have you been on it for an extended period of time? When you say you have to use the steroids every day how long has that been? Had you used then prior?
Just over a year ago I was put on a med stregnth steroid which seemd to work great. Eventually was using it twice a week, but was getting buzzing sensations. Went back to using it daily for months till I was able to see my gyn. Was then put on clobetasol. It's been two months of constant use until yesterday. Conducting a little experiment . I really would like to be off of it for at least small periods. It seems constant use of anything would lessen its impact.
Have you had the chance to check out PRP? It's the most promising treatment I've been able to come up with. Why not ask your own doc what he/she thinks about it?
Guest ginny00059
Posted
Hi Ginny,
I understand the alone feeling. I have it too. Have lost a few friends over this. Well, they weren't really friends were they. But, it is a hard topic to bring up. Oh by the way, I have these white spots on my.... and the .... are gone now......A conversation starter for sure. NOT. Most of the ladies on here are sincere and we all seem to feel that we are not getting the amount of medical attention we should be getting from our providers..... Keep reading and try out what you think might work. Then let us know and read some more.
I am researching through the medical journals when I have time.
hang in,
biscuit