New to LS in the Covid era
Posted , 6 users are following.
I'm fairly certain i have LS. my clitoris is fully fused and i have no labia minora. the skin below my vagina is irritated easily and tears. it looks slightly fused. sex is increasingly painful and i have zero libido. it is very difficult to orgasm. I am 34 years old.
i feel like something must be wrong with me. i have miscarried 3 times and just had an ectopic pregnancy. yet my hormone panels come back fine, vitamin levels all normal, no thyroid issues, egg quantity is normal. maybe it's unrelated, but i feel broken.
some questions:
- I want to get help but I'm not sure i should risk going to the doctor right now. what do you suggest? if the risk isnt worth it and this isnt urgent, what can i start doing right now in terms of home remedies?
- baking soda baths: did they work for you and what are the ratios of baking soda to water? do i rinse with fresh water?
- should i keep trying to have sex to keep things open down there? or should i abstain and let things heal?
- what kind of doc should i look for when i do go to the doc? if anyone has any recommendations in the nyc area, id be grateful.
0 likes, 9 replies
Nancy_K_B Notlichenthis
Posted
Dear Not Liking this,
I'm so sorry for your repeat miscarriages.
Just now I looked up, the phrase "nutritional deficiency miscarriage" and came up with pages of links. most importantly a quick scan -they all said VITAMIN D.
Now this is important because the same search on lack of orgasm comes up vitamin D, and 2 years ago when searching on LS is comes up Vitamin D. The reason I mentioned having gotten a second opinion cardiologist is that I couldn't stand the first guy who wouldn't have anything to do with nutrition!
So blessedly I found one who just happened to have cured his own Chron's diease by researching nutrition! He's so furious with his own colleagues - when he discovered that vitamin D reduces heart attacks etc he has been able to reduce the amount of invasive surgery he needs to do.
SO back the numbers now. This same brilliant doctor taught me about the vitamin D levels you don't seen written up as much. Most articles will give 20 ng/dl as adequate; some other article will say they've upped it to 30. Dr. Royce Bailey here in Asheville NC says that it is safe to get levels up to 80 or 90!
There are many other nutritional supplements that are needed to improve the nutritional status of a person with LS (which has been confirmed to be an autoimmune disease a few years ago.I created for us all a list of what i had found and I feel comfortable now taking all of them I have never taken the steroids - so don't feel concerned that you are trapped indoors for the time being. Please click n my name to bring up my profile and on the right side there will be another tab to switch to discussions and find my article on Nutritional Protocol for autoimmune conditions.
I think you'll find that the list is almost totally include what is needed to build a healthy body to support a pregnancy.
Baking Soda and or Borax baths are wonderful and yes very comforting. I usually just put a handful in the tub. The purpose is to neutralize the pH. Boron/borax (yes from the laundry aisle) is even a higher alkaline than baking soda but both are good. No need to rinse.
Oh gosh honey, don't you think the universe is inviting you to heal first? HOME REMEDIES. As you read through years of messages on here you'll find some repeated solutions. Coconut oil is one of my favorite; and aloe vera 99% gel fixed my tears and is so cooling/soothing. Others like olive oil. Vitamin E is very healing. I buy the liquid form so I don't have to prick tiny pills. but tiny pills can also be inserted into your vagina on your way to bed and will get dissolved over night by your own body heat. Vitamin A is ALSO helpful and healing to use in the same manner for fixing dryness etc. for a barrier to keep urine from irritating our parts down there, I use Desitin when needed ( the baby diaper rash zinc ointment). I sued it just last week for the first time in ages when for some reason the bottom at apex just where you are talking about seemed to be split and inflamed. - a ll good again.
OH! OH! lastly - have you seen yet on here that SUGAR is a big no no? I mean real real no-no. Honey, this is life long change... I mean the need to watch the quality of our food, yes once you are very well you can return to a little bit of honey on your oatmeal (or non sugared cereal etc). Others will tell you that they don't do wheat or gluten but we are all different in how we respond.
I do hope you can enlist your husband in these very healthful lifestyle changes that will eventually lead you to a lovely healthy baby. Blessings.
Notlichenthis Nancy_K_B
Posted
Thank you so much for all of this wonderful information! I just saw that you have extensively documented all your findings. This is so helpful (and admittedly a little overwhelming, but I'm so grateful)!
I have been taking prenatal vitamins. I double checked the vitamin d. It says Vitamin D3 as Cholecalciferol, 22.5 mcg (150% daily). Is this enough? I've had panels done several times, once a few years back because I was feeling depressed, and two recently from two separate doctors because of the miscarriages. I'm going to see if I can dig up their reports and look at the levels myself.
I am also a very healthy eater, so it's really hard for me to imagine eliminating foods but I'm willing to try! I don't eat much gluten or sweets as it is, but I've not gone completely sugar free or completely gluten free for more than 30 days (I will miss a drizzle of maple syrup in oatmeal and avocado toast). I also try to avoid dairy already, but I eat cheese occasionally. I've seen this is another thing to try eliminating entirely. I've also seen to include fermented foods daily, which I'm not consistent about. These are all things I will try! I appreciate the advice.
How long do I need to sit in a baking soda bath? Is it worth rinsing with baking soda and water every time I go to the bathroom? Should I avoid toilet paper? Do I need to reapply coconut oil or aloe every time I go to the bathroom?
Thank you so much for your help! It's reassuring that I'm not navigating this alone.
Nancy_K_B Notlichenthis
Posted
HI again dear Notlichenthis ~
So, the prenatal vitamin levels... and any of them really were origianlly determined in ..when? the 30's maybe. Before chemical fertilizers from world war 2 started destroying our top soils ( sorry, I'm landscape architect). As far as I know only lip service has been given to the real needs from what we can get out of our current food supply.
So, no 22.5 mcg of Vitamin D is like p*****g in the wind. especially in this circumstance of 3/4 miscarriages. You are so so deficient that there is no worry to taking too much. oh! Depression is another Vitamin D deficiency symptom. Here is some stats my doctor told me. He was happy to have me take 125 to 250 mcg for my heart (equal to 5,000 to 10,000 iu (international units). A friend of mine cured herself of breast cancer about 15 years ago taking 2,000 iu. Back then we were scared to take more because of that the doc thought they knew. But it worked, took 2 years though.
So, oh! when i first realized something amiss it was thanksgiving and I was out of town to visit daughter and grandbaby. Oh my gosh the pain. I intuited to take 15,000 iu of VItamin D3 that I had with me. I survived, out of pain in 3 days and got home in decent shape. Dr. Bailey confirmed that was fine to do and in fact told me the he prescribes as much as 40,000 iu to his african american patients. I thought I'd mention that in case you have that heritage, or any darker skin types. He taught me ( I LOVe to understand things- grin) that interesting factoid about different ethnicities slight variations.
ANYWAY - DISCLAIMER I AM NOT A DOCTOR just passing on suggestions for anyone to follow up on with their own medical practitioners. Problem may be that your docs don't know this nutritional info so you might have to find an Integrative physician which your insurance may not pay for - .. but if you want a baby folks it might take that.
Ah, so baking soda baths.. about 20 minutes is what we've been told, nice and hot, if you like you can add a few drops of lavender essential oil for relaxation (not bath stuff with all sorts of pollutants).
Toilet paper: don't wipe, only pat dry. You'll discover for yourself as needed on the coconut oil or ale vera gel; if you feel dry or "stuck' or uncomfortable somehow. I don't anymore, but when it was all raging - yes indeed.
A couple of the women 2 years ago, Hanny and Guppy mentioned that if we are willing to go zero tolerance on the sugar in any form- maybe including fruit- for about a week, then our bodies will kinda "reset" and we an return to a LITTLE sweet now and then. It used to be maple syrup for me and then my dowsing told me I needed to change to honey.
Finally Be sure to read up on my list of the COfactors for Vitamin D3. We can get away with a whole month of high dose Vitamin D3 and then we need to incorporate the supplements that balance out the entire calcium cascade. for instance Vitamin A keeps D from becoming toxic and vice versa.
I think I also saw this moring that vitamin B-12 is indicated in miscarriages as well as depression... so keep reading dear. Blessings,
brenda23819 Notlichenthis
Posted
you need to go to a gyn doctor and they can take a biopsy and tell you if you have ls i had 3 biopsy already but i am 70 years old and they said i had it well its cleared from below and now its on my skin.When its own your skin you have these white spots that run together. I had 2 kinds of pills for this and now there putting me in a light box 3 times a week.Seems to be helping but not real fast.
beverly52803 Notlichenthis
Posted
I don't think seeing a GYN specializing in LS and skin issues would cross over into those treating Covid, but maybe everyone is working on Covid in NY now, I have no idea. If you cannot get an appointment with one you might try a dermatologist that treats gyn issues. Not all do. If you see one they tend to teat it with different meds.
If you can't get an appointment if I were you I would try an over the counter cortisone cream. It is much weaker than prescription strength but may give you relief and help to control it.
Not sure how you can have lost so much of your vulval architecture without your doctors concluding that something is seriously wrong. When is the last time you have seen one or discussed these problems with them?
There are home remedies that bring relief, but it was hormone cream and steroids that had the most impact for me. I am a lot older so hormone cream may not be needed in your case.
There is sometimes a connection between thyroid issues and LS so you should have a blood test, not only the basic one but one that shows thyroid antibodies. You may first need to be diagnosed with LS to get this however. I had to push for mine which came back negative but good to know. Many need medication to support their thyroid.
There is a LOT of info online about LS. You need to read as much as you can.
Do you know not to use soap? I also take many supplements but have no idea if doing so has improved anything. I am 2 years into this and still trying to figure out the best protocol. What is most important is having a knowledgeable doctor that you trust.
As far as having sex some women report vaginal fusing so it may be a good idea if you can tolerate it. Personally, I think having to associate sex with pain is a bad idea, but may have to be seen as necessary.
There are other women your age who are on here. I would dialogue with them via PMs as their experiences would be most helpful for you.
Good luck.
Notlichenthis beverly52803
Posted
@beverly52803 your question about how doctors missed this is so spot on! I've been really frustrated because out of all of the doctors I've seen (many, many gynecologists, obstetricians, reproductive endocrinologists), only ONE ever said anything. This is a problem I think I've had all my life. I remember distinctly that in my early 20s a gynecologist said that she had "never seen such thin labia minora," and I felt upset about it, but then I googled it and there was so much stuff on the internet about vulvas/labia being all different shapes and sizes and all of it is normal—I just assumed I was normal. I don't remember looking differently. I also remember that my labia fused twice as a child, and my mom was constantly asking about my development during my adolescence in a way that made me feel super uncomfortable then, but now I realize she probably noticed something was wrong and was worried.
It wasn't until recently that I realized this was such a problem. We've been trying for a second baby for 2 years, and I assumed it was irritated from having more sex than usual. Then recently, I had an ectopic pregnancy and was ordered to take a 3 month break after having my fallopian tube removed. It was super irritated, perhaps even worse than ever, and I wasn't even having sex. That's when I realized this is really a problem.
I didn't know not to use soap! I will stop doing that.
beverly52803 Notlichenthis
Posted
I have recently started washing with Vanicream which was recommended recently by a poster. It doesn't seem to have a drying effect at all. Terrific after going soap free for 2 years! You can buy it at common drug stores.
beverly52803 Notlichenthis
Posted
If your labia fused twice as a child to what did doctor's attribute this?? Not LS? Children can absolutely have it. For some it goes away with puberty which is why there are theories it is estrogen related. Also because it is most prevalent after menopause.
Re kind of doc, you need to see a gyn that specializes in vulval skin issues. It was my good fortune to have stumbled upon one by accident. They are not easy to find. She left the practice which left me with no one until I found a dermatologist who prescribed an immunosupressant to use topically which made me too uncomfortable. She also had me using a strong steroid twice a week which was overkill. I will be going back to the gyn who has resurfaced, but the virus situation may prevent me returning home in May as initially planned so I'm not sure when I will get to see her.
I think someone posted she saw a great doc in the NY area. Maybe someone here remembers?
Joannwilson Notlichenthis
Posted
yes these are great info. I have been seeing oncology and uro gynecology.
been on 50,000 IU once week and daily A&D.
This forum has helped me so much. Thank you all!!!!