Dr said it might be LS, don't know what to do...
Posted , 6 users are following.
Hi,
New here, and would love to hear some input from you.. English is my second language so apologies in advance for any grammar mistakes. Also sorry it's so long, thanks in advance to whomever took the time to read it!
I'm 29, female, healthy, never had any vulvar issues before (no STI, yeast infections etc.). I'm not sexually active at the moment, the last time I had sex was maybe 4 years ago. This is not due to sex being painful, mostly due to lack of interest in the act from my part (long story, different issues, I think).
Anyway, about two months ago I started making some changes in my life which included an increase in the attention I've been giving to my vulva. I started using a trimmer down there, plus a new oil to soften to skin and started using a mirror to look at my vagina for the first time probably. A couple of weeks after that I started feeling an itch/irritation there, and I observed several bumps on my inner labia which I'm pretty sure weren't there before (but can't say for sure). I went to a gynecologist who said the bumps are nothing, diagnosed a yeast infection and gave me antifungal treatments for the itch. the itch mostly subsided after a week but not completely and I was still worried about the bumps so I went to a different gynecologist, which said it might be HPV but he's not sure and that I should come again in a week. When I came back he took another look and said it's not HPV and that it's nothing and gave me a general skin ointment for the itch.
Last week the itch got a bit worse (but nothing drastic, the vulva will be a little itchy several time a day but nothing extreme), the bumps were still there and I was still worried so I went to a vulvar diseases specialist who took a swab for yeast infection, but he also said upon visual examination that he suspects I might have LS due to some fusion and skin appearance - he said my inner lips are very small and my clit is a bit buried by the surrounding skin. He wants to do a biopsy even though he said the results are very unreliable.
I'm completely freaked out and don't know what to do or think. I asked him what else can cause my vulva to look like this and he said something like "deviation from the normal" which completely sent me spiralling - what I heard hime say is that my vagina is weird looking and I'm a freak. This is an extremely touchy subject for me and I honestly don't know how to deal with it. Going online made everything so much worse - almost every post online about LS is from women in menopause and women complaining about difficulties enjoying sex and that the fusion keeps progressing rapidly and I just feel like I'm on the brink of a massive panic attack. I just now took the first step into what I hope will be a beginning of a normal and maybe even enjoyable sex and love life and now this came crushing down on me and sent me backward like 10 steps.
And to make things worse, even if it's not LS I will still have the notion that my vagina is weird and freaky looking stuck in my head. And if it's LS then I need to manage this disease which neither me or my surroundings know anything about, while also trying to form a relationship and constantly be nervous if the changes down there are getting worse and I just feel so drained and scared and lost.
A big round of applause for whoever managed to read this far, I'm in your debt. Thank you.
1 like, 11 replies
Alex1968 Jen99999
Edited
I would stop trimming down there to start with.
Try using diaper cream with zinc and hemorrhoid cream for the itch.
Bath in Epson salt everyday.
If it is LS you will be prescribed Clob. A steroid cream.
Be careful on application as over using this makes things worse. When you are in pain you think well I will just put more on or more often. Don’t do this.
I hope this helps.
Jen99999 Alex1968
Posted
Hi Alex,
Thank you for the reply. I will def stop with the trimming and any other unnecessary treatment there.. Haven't been prescribed anything yet but will keep in mind your advice about Clob.
Thanks again for your support.
lu43547 Jen99999
Edited
Hi Jen
I can completely understand where you are coming from and myself over the past few weeks have been on the verge of panic, i haven't been to a doctor yet so still not sure what mine is and it comes and go's, its also hard for me to know because I have vitiligo so i have had uneven skin colour in various parts of my body for 12 years!
I am 32 in a couple of months and i also have never had any vulva issues until november last year and i also hadn't had sex for 4 years, it was painful but any muscle would be that hadn't been used for 4 years!
It is very strange to start looking in a mirror down there and wonder if its always looked like that?? and i think i may be right in saying every vagina and vulva is completely different so how can a vagina be weird looking if no two are the same?
Im sorry I cant help you any more than that but i hear you and i really wish you the best of luck in getting some answers soon.
Jen99999 lu43547
Posted
Thank you for your reply! I'm sorry to hear youre having a difficult time yourself and hope your find an answer and solution for your problem as well.
Thank you again for your support, it warms my heart and makes me feel less alone.
Alex1968 lu43547
Posted
I also have vitiligo so I thought it just spread to my genitals. So didn’t think anything of it. My doctor also thought it was just vitiligo. Took 6 visits to figure it out and it was a dermatologist that finally made the diagnosis. The burning was unbearable.
sarb73328 Jen99999
Edited
the doctor who said deviation from normal should be ashamed of himself - that is such a horrible thing to say and probably quite wrong as all our vulvas are so different.
I am 66 and have always had small inner labia that are now slightly fused to the outer ones and the clitoris is slightly fused also. I was diagnosed with LS by a gynaecologist without him having to do a biopsy. With careful management with steroid and various creams, my fusing has not progressed for 6 years.
As I understand it HPV doesn't effect the vulva, only vagina but is related to the wart virus and they can appear on the vulva. I had them in my teens. I have had pre cancer cells treated on my cervix 6 years ago and tested posiitve for HPV. My last smear showed I was clear of it. I believe that cervical procedure set off my LS as I had no symptoms before that.
What I am saying is try to keep calm. I am sure you will find a way through this and your sex life will be fine. Get the steroid cream and try the moisturisers everyone uses on here until you find the right regime for you. And more importantly try to find a sympathetic doctor, preferably a dermatologist as they seem to know more about this disease.
Take care.
Jen99999 sarb73328
Posted
Thank you for your words. While I dont think the dr meant any harm, I also dont think he fully understood the effect his words can have on certain patients. I'm trying to find other options but there arent many vuvlar diseases specialist around here..
I'm trying to stay calm and keep having positive thoughts. He didnt think I should start treatment before we have a more conclusive diagnosis so in the meantime I'm making some changes to my diet, based on information I found here and other websites.
Thanks again for the support, it means a lot.
Sarah9048 Jen99999
Edited
Hi Jen,
I'm 25 and I'm almost constantly in discomfort now basically out of nowhere in my vulva region so I also feel like I'm on the verge of panic a lot!
I agree with everyone else here that everyone's vulva looks different regardless, so that comment from the doctor was irrelevant. The only important thing is that you're healthy in that region!
If it's LS, like others have mentioned, the steroid cream will stop a lot of the architectural loss progression and many people have good tips for symptom management on here.
I wish you the best.
Jen99999 Sarah9048
Edited
Hi Sarah,
Thank you for your reply. I hope you find a solution for your discomfort as well and soon.
Thank you for your support and advice, I truly appreciate it.
Jen99999
Posted
Hi,
wanted to give an update.
I went to get a second opinion from another vulvar disease expert, a woman this time. It turned out she's the lead expert in this field in my country.
Anyway, she took one look and told me I definitely have LS, and that I probably had it for years. She said I'm asymptomatic and that because of the yeast infection and me being super stressed out and going to a billion doctors I accidentally found one that knew what LS is. Which is outrageous that so many gynecologists don't know about this disease and how to diagnose it.
She gave me a steroids ointment to put on 3 times a week to stop the morphological change down there and said it might even reverse some of the changes that already happened. She was so supportive and really calmed me down and helped me deal with the diagnosis, compared to the other doctor that made me go into a whirlwind of crying and anxiety and almost made me a do an unnecessary biopsy.
So- ladies, please find the right doctor for you, they don't only need to be knowledgable but also kind and supportive.
I know I'm lucky to be symptoms and pain free, and that I'm strong enough to deal with the other aspects of this conditions. I'm thankful for the support of this forum and wish everyone here peace, relief and happiness
dee3296 Jen99999
Posted
I am so very sorry that you are dealing with these issues. I just want to tell you that there is life after learning you have LS. I have dealt with it for over ten years. I've had two biopsies and was also prescribed the steroid cream. I am so appreciative of some unknown person on this forum!!!! Their advice changed my life. I was told to try Emu oil, which I did. I still use the steroid cream once a week, per my gynecologist's advice, but he is amazed as to how my skin has changed. The best part is that the itching comes seldom now and life is much better. That doctor should never have spoken those words to you. Don't replay them in your mind. It's not you that is wrong! It's him!