LS has ruined my sex drive

He needs to get educated about LS have you both opened up the internet and looked at the images for LS you should do that and you should also join the groups on Facebook there's a couple of them that are really good and they are so nice about explaining everything... all the women can address your problem and help you I would do that if I were you but your boyfriend I mean your husband really needs to start getting educated he is acting very selfish

Sorry you are going through this. I understand because my situation is similar. For me, im much older and have had a hysterectomy years ago. My husband and i have been together for years so that helps but he is having a hard time because our sex life was always okay and now i just mostly am not interested for the same reasons as you. I have found that the coconut oil is the best natural lubricant and doesnt irritate so much. My husband had had to learn that this is a disease and i can only do my best to control the symptoms. It has taken him awhile to understand this. He thinks i should just be able to ho to a dr that can fix it all. Although ive found ways to deal with this and maintain it to a minimum, sex still irritates me and i cant be as active as hed like because i need days of recovery to keep irritation down. Im trying to find this happy medium and your man needs to be compassionate and if he is too young or cant be then hes not for you anyway. If you get it under control you should be able to be secually active without pain. For me its not painful during sex like it was when its really flared but afterwards my skin is irritated and i need days to recover before i can go back to the well so to speak

Hi Daisy,

I’m sorry you are experiencing this problem. For many years, I’ve had pain for several days after making love, so I understand how you feel.  Can you get your husband to agree to sex once a week?  In between, there are other things you can do to satisfy him.  It sounds to me like the biggest issue is that he’s afraid you no longer find him desirable.  We all need to feel that our partner desires us.

Have you tried soaking in a bath with 1/3 cup baking soda?  It really helps with the itching and burning.  Also, a huge help for me was using sodium borate (Borax).  Read the thread, “An Experiment with Borax”.

Don’t give up.  If you really love each other, you can be creative and find alternate ways to express your sexuality.

I understand what you are going through. On our honeymoon I tore so badly I needed stitches. It was not the first time I had sex and I have always had issues but not like that. At that point we didn't know I had LS but now it all seems to make sense. Since then I have been fearful of sex but still have it. I do believe it has brought my drive down and part of it is fear of that happening again. I am 35 and that happened 10 years ago.

When first diagnosed my husband was afraid to touch me. After many talks and reassurance we are coming back. Coconut oil as lubrication has saved us!!! Also I immediately rinse off afterwards and apply aquaphor ointment.

There is hope but patience is important. You guys are still so young. Maybe this will bring you closer.

Hi daisymayy!! I'm 19 nearly 20 and I have had LS for around two years now, I live with my boyfriend and we rarely have sex. Not even rarely, but we like never have sex. And I feel the exact same way as you, it's painful and hurts for days afterwards and I have no urge or desire to have sex either which makes it hard for him to understand because my boyfriend sounds similar to you partner. He has a high sex drive and had to deal with my lack there of. I found it especially hard dealing with LS because I used to have a really high sex drive and enjoyed sex But now I feel no want or desire. I totally understand how you feel!!!! It's so frustrating and there just no way your partner can fully understand what you're going through I've been trying various methods to help with sex, I've been using a dilator to help me get used to the motion of sex as LS gave me nerve damage around the opening of my vagina and the pain has never gone away and the dilator seems to be helping as you can start from really small sizes and work your way up. Using different natural/water etc lubes with the dilator to see what works best. I've also found having a nice long shower or bath with my partner increases my drive just the slightest bit and relaxes me. I also have a few more suggestions I'm happy to personal message you about but probably shouldn't share on a group page haha.

Sending you lots of love because there's so many other women out there experiencing the same thing, you are not alone!!! Xx

I would take him to the doctor with you! It's hard to sit there and tell him things if he doesn't believe you! It's hard to explain to someone who have a vagina! I would have your doctor explain what happens down there during a flare up and how it's mentally and physically draining! I understand what you are going through! I feel awful, I never want to have sex with my husband I am thankful he is so understanding! He was not at first but I think he finally realizes this is no joke! It sucks to have LS!!

Hello Daisy, So sorry you have found yourself in this position but there is

real hope that you can improve your situation and condition. I am not

going to repeat what everyone else is telling you. It is all good advice and

other's experiences are valuable. I will agree though that coconut oil has

been a saviour for me, in terms of moisturising and the best lubricant.

I have had a very similar situation to you and like Charlotte am older and

have had a hysterectomy. For years before this I had started to lose my

desire for love making for all the same reasons. One thing I will add is that I

had not realised I had fused and the vaginal entrance had become so small

that it all became impossible and so painful. Like you I had some really

chronic splits and cracks at the top which had adhered together. If this is

what has happened to you, then it needs to be addressed separately.

Stretching with a dilator helps, but does not re open the fusing. Alongside

dilation, I use sodium bicarbonate mixed to a high concentration and applied

with a cotton bud. There is evidence that this is working but it is slow.

My Dermatology nurse is supporting this but has offered surgery if I want

it. All these things initially scared me immensely but as I am learning more

about it, I am also improving and controlling it. It took me a long time to talk to my husband about it and even now he doesn't fully appreciate the extent. It's not an easy thing to discuss but I am so much happier now that we share it.

My dear...do I ever feel your pain...

My husband has gotten to where he is compassionate about my situation, but it's still hard on him.

I explained it to him once that it's like Pavlov's training for us. Our bodies have been trained to expect pain and disappointment with sex, so why in the world would our brain or body want to keep going back? It's a hard "classical conditioning" to fight against.

The only lubricant we've found that doesn't burn is called "Estroven" and I think it's more of a menopausal type dryness lubricant, but it's worked as well as one can for us.

Definitely check out the "Experiment with Borax" thread. It's made a big difference in my symptoms. Also, many people have posted about seeing dermatologists for this as well as their OB, so that might be another avenue.

Google for some blog posts about LS and sex and see if he'll read those. Maybe an outside perspective will help him understand?

Good luck and hang in there!

Hello DaisyMayyy,

 Hope by now you have found some relief from your LS. I too have LS and it has been a horrible problem for my marriage. My husband also thought i was making excuses and didn't believe me. He also thought I didn't want him or desire him anymore. There have been long arguments and hurt feelings. He has come to understand the burden of my disease, and is much more sympathetic and caring now. However the pain with sex over the years and killed my sex drive. Recently I found some help.

First thing I found that I was allergic to gluten. Once I stopped eating gluten the inflammation in my body decreased. I still had/have issues with wine and vinegars, that seem to trigger a reaction. For me food like high fructose corn syrup, pickles, wine with sulfates, seemed to bother my LS.  I read on a forum that other people have started taking apple cider vinegar. So I tried it to change the PH in my body. a tablespoon AM and PM, and changed my salad dressing to apple cider vinegar also. The next thing I did was get some Emuaid ointment. I also read that this helps LS. It is not cheap and I have been trying it for a month. The results for me is pretty amazing. I have gone a few days thinking, "wow, I'm not hurting when I go to the bathroom". looking forward to seeing how tis pans out.  I apply it Am and PM. Another thing I have heard is about natural anti inflammatory Curcumin. A product of turmeric. it comes in capsule form and is supposed to be pretty strong. For me it makes we spacey. So I have added blueberries and black current to my diet, which also have anti inflammatory qualities.  

I've had LS all my life. I had biopsies of the ulcers, and it came back as allergies in my late 20's. But i didn't believe it. I finally found a GYN that is a specialist and she did diagnose me with LS in my 40's. It feels like I am finally getting a handle of LS, after all these years, and feeling like maybe a normal woman would. However the body muscle memory and mind is very strong, and sex is an issue for fear of pain. It has only been a week or two of having relief. There is a fear of getting too excited about it.

My mother  suffers from LS and has had extreme physical deformities from it. She is taking Curcumin and found that she is not having flare ups.

Hope that helps you.

Warmly, Gabrielle