Distraught
Posted , 15 users are following.
I had my biopsy yesterday. I'm pretty sure it will come back positive. I'm heartbroken. I'm 37. I feel like I can't be a good wife and like my life will be over.
I'm also in discomfort. Burning, dryness...I've been give Estrace for shrinking parts until biopsy comes back, but my estrogen was checked and it is fine.....I feel like I want to crawl in my coffin now...I have 3 small kids. Im finishing up grad school.
I should be happy right now...
0 likes, 37 replies
elle2424 Assilem7477
Posted
I hear you. I was devastated by my diagnosis. I’m 28 and newly married. I was feeling like my life was over, my intimate life ruined, why did my poor husband get a wife with a broken vagina?
But so far, the clobetosal is helping to control most of my symptoms. And I’ve gotten so much good advice from the people on here that I’m hopeful. I’m using a bullet journal to track my symptoms and noticing that many days I feel fine.
I feel empowered when I have solutions ahead of me. Some of the things I’m trying include:
Cutting back sugar and dairy
Taking a multi vitamin and omega 3s
Getting probiotics
Drinking unpasteurized apple cider vinegar
Really good lubricant
Moisturizing down there with coconut oil
Some of the things I intend to try;
Baking soda baths
Vaginal dilators
Asking my doctor about a specialist
Eastern medicine
Keep going. Don’t give up. Everybody has illness in their lives or things wrong with their bodies that you might not know about.
Stay strong. We’re with you.
debbie04643 elle2424
Posted
So sad to hear you have to deal with this so young. I have 2 daughters in their 20s and pray they don’t get cursed with it.
Are you also in the US? I ordered Lisepten from Cloverleaf Farms as I heard it was very good (I’m in UK). Going to use it once I heal from biopsy.
Can I ask how you take the apple cider vinegar?
Also which probiotic you take? I’m taking Vit D and Magnesium Glycinate.
I’m wondering what others use to help stop the shrinkage ?
We all need each other’s tips on here!
Debbie
elle2424 debbie04643
Posted
Right now I’m trying to get probiotics in food like yogurt or kefir. Probably i need to find a better way, since I don’t get it regularly and since I may cut out dairy. Cutting out sugar is so hard!!
I’m in Canada.
I put 2 Tbs if ACV in about a half cup of water and drink it, not on an empty stomach. Can’t say if it’s helping. Probably shouldn’t be trying everything at once... not very scientific lol.
I’ll look into the Lisepten— thanks for the tip.
You’re right, we all need each other’s advice. I also need help with the shrinking... it’s the part that makes intimacy the hardest for me.
debbie04643 elle2424
Posted
Taking all these different treatments in is mind blowing too!
debi14820 elle2424
Posted
Guppy007 Assilem7477
Posted
Hi there. There is no doubt that it is devasting when you first hear the news that you have LS. But everyone is correct in that you will come to terms with it in time. You will need to start reading as much about this condition as you can because you cannot always trust the doctors and you have to be your own advocate for this disease. Also remember that you will likely go into remission, probably lots of times and it will feel like you are perfectly fine when that happens.
It looks like you have got great advice and so I am just going to list for you some tips that will help you.
Buy some dilators and use them regularly when your in the shower...this stops your Vjay from becoming too narrow for sex....very important.
Use some kind of oil like emu oil, coconut oil before bed as I believe this stops the labia minora fusing to other parts of your Vjay.
After using the bathroom spray with a little water and salt or water and bicarb of soda. This removes any urine and stops irritation.
Never ever have sex when you are sore down there.
Use the Clob cream sparingly and always use a mirror to make sure that you are applying it in the correct spot.
Look up the thread 'An experiment with Borax' on here as many women swear by it.
Finally, by using your dilator with ky jelly before sex you will find it helps things a LOT.
elle2424 Guppy007
Posted
debbie04643 Guppy007
Posted
One thing I’d like to know is when you go into remission I’m assuming it’s when you have no flare ups for a period of time? What I’m confused about is where do you apply the clob as maintenance if you have no visible issues ie white skin or soreness?
elle2424 debbie04643
Posted
Guppy007 debbie04643
Posted
Hi, Remission is when you have no itching/sores/cuts white plaques of skin etc.
Your second question is a good one and you will find that there are two different trains of thought with regard to this. Some people think it is beneficial to use the Clob maybe once a week even though there are no signs of LS. This is classed as maintenance. Other people don't believe that is a good idea due to the strength of the Clob.
I cannot honestly say who is right or wrong. You have to decide for yourself. I chose a long time ago not to use the Clob at all unless I have a flare up which for me is very rare.
That being said, in the last year I have noticed an acceleration of my Vjay reducing/shrinking and I now only have one labia minora. It would be easy to say that is because I have not used the Clob, but I think it is due in part to the different medications I have had to try this last year for a different problem. I am now on Humira after trying many other meds and I think this impacted my LS. Incidentally, when I was taking Methotrexate for Arthritis I had a severe reaction with ulcers in my mouth and vagina, and so it is not always just foods that can trigger a LS flare ups.
It does make me a little uneasy though and I do wonder if I had used the Clob this might not have happened, but at this point who really knows.
Assilem7477 Guppy007
Posted
I already have 1 labia missing. I was treated incorrectly for too long. Keep getting diagnosed with yeast. My clitorus is shrinking. I am only 37. I'm losing my parts and it is frightening. I'm mad at my dr. And at myself for not stopping this from happening. I have a supportive husband, and he tells me he won't leave me no matter what, but I feel like he has been jipped and I dont deserve him. He deserves a wife that he can have sex with. I really don't want to go on...The missing parts are terrible! If it was just a skin condition with no deforming I could deal, but I can't handle the missing parts.
debi14820 Assilem7477
Posted
I am in the same condition Assilem. My husband has been with me several times and has seen the damage caused by the LS. Marriage is about love and commitment. There are are other pleasures of sex. Check out different ways online. I don't think I should list them here. Give it time. Don't give up. Take care.
Guppy007 Assilem7477
Posted
Hi, yeah, it is hard at first, but it's not the end of the world.
I understand your anger too, that's the problem with LS, doctors don't always know the answers and pretend that they do, causing problems for us all. My doc didn't even mention fusing at all!
Personally, I have come to think that having no labia minora is not going to be that awful.. I did some research online and some women are born without their Labia minora and they do just fine. I am not trying to put a good spin on it, it's just that men don't notice things that we think they notice if you get my meaning. Also, I highly recommend that you google 'The Mona Lisa Touch' which is something I have talked about having done myself but not got around to it. I think there is some success for women with LS with that treatment. With regard to your clitoris, I think if you are noticing it shrinking I would start applying the Clob on there maybe twice a week for maintenance. It is you decision really on how often you use the Clob. I always had problems with my clitoris and he clob seemed to do the job,
I always hate having to mention diet but I'm gonna anyways...remember sugar is a major trigger so try not to over indulge in that.
If you want to ask me anything else at all just ask.
Assilem7477 Guppy007
Posted
I dont have any clob yet. My biopsy wont be back till Mon, but obviously with missing body parts, burning, itching....it will be positive...I know it, bit Im dreading the diagnosis. I have estrace until then.
My husband has psoriasis and has the club for that but it's the cream and I'm wondering if I should go ahead and start using it but I hate it to be the wrong dose or something.
Guppy007 Assilem7477
Posted