LS?? Or something else??
Posted , 7 users are following.
From what I can tell based on photos I have taken in the past till now, it looks like my vulva is shrinking. Am i allowed to post photos? Not that i want pictures of my vagina on the internet, but I would love some clarity.
Below is a little background...
I am a 24 year old female. Not sexually active yet. I feel like im too young for LS but my hornones have never been great. My period is always irregular...anywhere from 4-7weeks between periods. Gone 3 months without one before.
About a year ago I started feeling pain down under and became obsessed with trying to figure out what was wrong. The first thing I notice was my skin seemed weaker and upon inspecting down there, I caused it to fissure. That alone took awhile to heal. I figured the pain was from the fissure, but once it was healed, I was still in discomfort. Some days more than others. Urinating never hurt. But working out and the friction from that hurt! I decided to go see a gyno. I had gone to my first gyno apt a little before this all started. General tests/pap and everything came back normal. Told this new gyno (i moved) what was going on. He took one look and said that the scaring looked like it could be scars healed from herpes. I was taken aback to say the least. I let him know that i had hsv1 (coldsores) since i was a baby. We did the full blood test. All hsv2 came back negative, recent exposure hsv1 came back negative, and long term hsv1 came back positive, as I expected. He told me those results supported it being hsv1 but down there. I tried to explain to him that didnt clarify since I was going to show positive for that regardless. He told me since it was all healed up, I didnt need any medicine and should be pain free soon. Last time i checked, i never had a hsv1 outbreak last 4 months.
Fast forward 6 months later and im still in pain. I even used my coldsore meds (valtrex) 2x day for 7 days to try to fix it in case he was right and I infected myself down there. But nothing has changed. Ive been experiencing pain for a year and I just dont know what it is or what to do. Please help!
0 likes, 19 replies
beverly52803 jess57570
Posted
jess, did you discuss the possibility of LS with him or have you just discovered it through your own internet searching? If you did bring it up, what was his specific response re possibility?
How did the valtrex cause an infection? Was this ointment or pills?
jess57570 beverly52803
Posted
hi beverly! I did not. I had heard about LS but i didnt think I could have it because of my age. But now that the pain hasnt gone away in a year, I really started exploring other ideas. I dont think a herpes outbreak could last that long...at least my coldsores never lasted longer than 2 weeks and that was before my doctor allowed me to take valtrex.
and sorry. poor choice of wording. The only way I could have gotten hsv1 was if i infected myself...maybe as a child? so in case he was right and it was hsv1, i took my meds to see if it would help. but it didnt clear up my pain.
beverly52803 jess57570
Posted
Don't think there is such a thing as being too young for LS. According to the handout my gyn gave me it sometimes affects girls before puberty and young adult women, not just older women though it is more common in women after menopause.
I would go back to the gyn unless you were not happy with him. If that's the case, you might want to find one who specialises in LS. The other option is a dermatologist who does. You should not be experiencing pain for a year and need to find out the cause.
Do you have a GP? Maybe he/she can refer you to someone. Hope you can resolve this soon.
jess57570 beverly52803
Posted
oh, i didnt know that.
once i move back home in december, i am going to do that. I wanted to try to determine if there was any other explanation i could bring up when i go to the doctor. Discomfort for this long just seems so strange to me. and after scouring the internet, ive found lots of people who "just deal with it", but that just sounds awful.
i appreciate your help with this!
alexandria67333 jess57570
Posted
I'm 31 and I've just been diagnosed. I've had "thrush" regularly for many years. I now wonder if it was thrush at all. My doctor told me young girls can get it. I also have a hormone imbalance and irregular periods, so I do wonder if it's linked. I started taking Vitamin B6 a couple of weeks ago to try and see if I can deal with it naturally. I don't want to pump myself full of synthetic hormones.
jess57570 alexandria67333
Posted
wow. this sounds just like me. i was told i had thrush so many times over. and they gave me a pill for it and it never did anything.
what other natural things are you doing to help it and what are your symptoms? i didnt know B6 helped.
hanny32508 jess57570
Posted
You've been through a lot. My thought is that sitting in baking soda baths might help you. (1/3 cup in a full bath) It helped me to prevent infection. It also keeps my LS in check.
Next to that I would check on my diet: sugar was a sure trigger for me to make things worse. Gluten free diet helped as well.
jess57570 hanny32508
Posted
That I have haha. Managing nonetheless.
I'll have to try the baking soda baths. Never tried that before. Thank you!
The cutting down on sugar thing is going to be hard. But if it helps, im down to try anything!
karen23320 jess57570
Posted
JESS- I was diagnosed in JUNE, found this forum and decided to cut out wheat, cut way back on sugar and watch oxalates.
Beginning of OCTOBER I did a 21- day elimination- no gluten, no dairy, no sugar. Had no symptoms and was feeling good. Supposed to add 1 thing back in at a time, cheese was fine ( still haven't tried milk), had multi- grain bread was fine, had a bit of sugar and next day was raw, red and itchy! Also had a sore spot on my scalp- googled it and they said it was autoimmune inflammation ( to something I ate- of course it was!) NO MORE SUGAR FOR ME!
Next up is food testing for sensitivities and intolerances. Determined to find weak link in my immune system.
lots of great info on this forum- check out NANCYY B'S AUTOIMMUNE PROTOCOL- use of supplements!
jess57570 karen23320
Posted
Thats super smart! Thank you for your advice. So what did you eat when you cut all that out?? Im really struggling with the cutting out all sugar. I am a lover of fruit!
I already barely eat dairy and gluten!
karen23320 jess57570
Posted
I ate beef, pork, chicken, salmon, rice, gluten free pasta with lemon- pesto sauce ( no pinenuts), lots of veggies, gluten free/ dairy free pizza with a rice crust, cauliflower cakes made with gluten- free panko, herbs and egg, coconut milk in low- acid, high antioxident coffee, eggs and veggies in AM. I LOVE TO COOK so I didn't mind experimenting. I ate apples and red grapes which are both lower in sugar ( natural sugar), bit did mot eat any white sugar, brown sugar, -artificial sweeteners, candy, chocolate, etc. I EVEN GAVE UP MY PINOT NOIR for 30 days! less than 1 gram of sugar per glass, but I STILL Avoided it. ugh!
hope this helps!
beverly52803 karen23320
Posted
karen, so are you now avoiding only sugar? Or are you still on that diet?
karen23320 beverly52803
Posted
it was a 21-day elimination to check fir changes. I'm off of it now, avoiding sugar, I limit my gluten and hv dairy, but not a lot. SOY is too high in oxalates for me to hv , so it's not an option. All is still calm, symptom free, but am using steroid 2x a day to clear up the 2 white patches. But I feel fine, back to all normal activities
beverly52803 karen23320
Posted
karen, when were you first diagnosed? Did it start with what people call a flare up and have you had more than one? Mine has apparently been a gradual process and I had no idea I had it. My doctor said some much older women have had it for many years, have lost much of the genital area and are unaware until they come for an exam. That leads me to believe there are different ways of experiencing it.
karen23320 beverly52803
Posted
Beverly- I was diagnosed June 6, started having symptoms in late February/ Early March. I had the flu in January, was coughing all the time, peed on myself several times a day. My skin got very irritated from the urine, I used Adult Balmex but the itchiness, pain and tingling in my ureter/ clitoris got worse and worse. I went to my GYN in May because it felt like I was peeing fire. All home tests for UTI were negative, but I had a feeling of " fullness" in my bladder and it seemed to take me 2 weeks to recover after having sex. My GYN thought maybe it was Herpes, I had open sores and so much pain. All tests were negative for StD's and pain continued to get worse. I went back June 5 and she agreed it was awful, I went back the next day and had 6 biopsy sites done- all were positive for LS. I think I have been very fortunate in that that was my only bad episode or " flare" and that is why I am following an autoimmune protocol. If I can find where the weak link is in my immune system, I hope to put this to rest and ward off any further immune problems from surfacing.
beverly52803 karen23320
Posted
karen, sounds horrendous. I have experienced nothing like that. I'm sure you have said in previous conversations (can't remember who is who), but are you working with someone who put you on the diet? Around menopause I went to a women's specialty clinic in Maine and they put me on one on the assumption I may be harboring yeast. There were no changes other than losing 8 lbs very quickly. Would love to lose them again, but would never do that diet again! Hope you get to drink your pinot noir once more. I love my glass of wine with a meal also.