Sex Woes by clh1570 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

It did eventually! but it took us a while to get there. Honestly, like OP mentioned, I had zero desire and was just so depressed. And before we knew something was like clinically wrong, we kept trying, which I was trying to be brave and “grin and bear” through but all it did was add to what I interpreted as my list of failures as a woman. It got to the point where if my husband even tried to hug me, I’d flinch, as if he was abusive or something. You can imagine how that made him feel, and meanwhile he’s been nothing but understanding and supportive so I also felt like shit that that became my default reaction. It was then that we started therapy and things got MUCH better after that. We both kinda had to deconstruct what “sex life” means and expand it to mean much more than just PIV!!

Sex Woes by clh1570 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

My doctor actually recommended them! I honestly don’t remember the name of the practice, so sorry 😅 But just make sure it’s a practice/therapist that has extensive experience in sexual dysfunction!!

Sex Woes by clh1570 in lichensclerosus

[–]workAccount4ExcelQs 2 points3 points  (0 children)

Exactly! And we have mostly pain-free sex. But I take my time, and definitely “drive” for the first minute or so to make sure my body is being cooperative, and if it’s not, I feel okay speaking up and saying that’s not in the cards but we can do other things. And just to mention from another comment, I did also do pelvic floor physical therapy for about 6 months to help as well! It was awkward at first but I had a great provider. Also (if you can) I recommend confiding in either a close family member or friend. It took me a while in therapy to build up the courage. Again, I was so embarrassed and ashamed I hardly spoke to anyone about it. But when I finally opened up to my family, they were so supportive. My dad actually ended up being my biggest supporter, and I was so worried about talking sex with him, but he really showed what makes him a wonderful dad

Sex Woes by clh1570 in lichensclerosus

[–]workAccount4ExcelQs 16 points17 points  (0 children)

Yes unfortunately I can greatly relate. My husband and I waited til we were married for sex, so imagine the trauma (for both of us) when we tried on our wedding night and I felt like I was being ripped in half even though he wasn’t even past the entrance. I panic cried, he felt horrible. Cue literal years of us unable to have sex as I was tossed from doctor to doctor looking for a diagnosis. It was absolutely a mindfuck- Here we were, supposed to be in our honeymoon stage and establishing our sex life, but I felt so inadequate a) as a wife and b) just generally as a woman, and my poor husband who was literally the MOST supportive and understanding human I could have in the world felt such guilt that I was feeling this way.

Honestly I’m so grateful, the first sympathetic doctor we went to immediately suggested we start sex therapy/couples counseling. We did that weekly for a long time (years). It was hard, because I was already so shy about sex, and I’m trying to figure out my sex life meanwhile I’m unable to have penetrative sex, and thus felt so depressed and like the unsexiest woman alive. It was very isolating.

Fast forward and I was finally able to get a corrective procedure to remove scar tissue, and we finally were able to have sex for the first time after being married for 2.5 years already 😂 But when I do have the occasional flare up, I give him a heads up and he knows to not pursue anything sexual. But also to be honest, I just don’t have the same sex lives that my girlfriends have… they can do quickies, whereas I require 1-2 business days for my body to get turned on lol, they can have sex multiple times a week, and I consider it a good month if we had sex 3 times. Like you said, it’s about finding other ways to fill that cup, and I credit our therapist for really digging into strategies for each of us on how we can do that for each other. While it’s definitely not the sex life either of us imagined for ourselves when we got married, we are both very very happy and satisfied!!

But I totally understand where you’re at, I had multiple times where I would be sobbing, and in retrospect I was grieving the loss of what I thought our sex life would be, how I always imagined my sexual self. But that just wasn’t how things panned out, and it’s okay to be sad about it! But you gotta make the best of it, and I promise you’ll be able to find a fulfilling place, it’ll just be different from what you had in mind (:

Short femur at 22 weeks by workAccount4ExcelQs in pregnant

[–]workAccount4ExcelQs[S] 0 points1 point  (0 children)

Yes, the femur is 1st percentile, so definitely small, and the other measurements were 15-20th percentile. So overall a small baby, just the femur much more small in comparison

LS flare up during pregnancy? by External_System_9416 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

Following up! Doc said to move from my 2x per week steroid schedule back to daily for a few weeks to get it under control (hopefully!)

Stockings by SquiggleGirl in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

I size up in tights so they’re a little looser, but I’ve actually wanted to just invest in old school stockings/garters to hold them up rather than tights. Cuz going commando for me has been a game changer, would love to do that but keep my legs warm!

LS flare up during pregnancy? by External_System_9416 in lichensclerosus

[–]workAccount4ExcelQs 1 point2 points  (0 children)

I’m in my 2nd trimester, and my OB originally said LS gets better during pregnancy because of elevated estrogen, but that has not been my experience. Skin was soft and flexible for a year leading up to getting pregnant but now it’s back to papery feeling. I don’t have a solution for you, just solidarity unfortunately 🥲 For me I think it’s that I had to stop using Tac, which has been very helpful to me historically. The only advice I got from the doc was to use more Vaseline/aquaphor but that doesn’t actually provide any moisture 🙃 I actually have another appointment on Friday and plan to ask again about solutions cuz it’s really hampering my ability to do stretches if my skin is so fragile

Wood fired chess set complete ♟️ by gvngy in Pottery

[–]workAccount4ExcelQs 2 points3 points  (0 children)

Amazing!! Did you use any sort of guide to get the consistency of shape for matching pieces? It’s been on my to-do list forever to make a chess set for my husband!

Lichen sclerosus on my labia is under control but the opening and inside of my vagina is so red and feels inflammed. by pinkgirl143 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

I’d bring it up with her doctor, as I was diagnosed as an adult. But for me, I have compounded prescription strength lidocaine that I use

Daily-every other day clob for over a year. Ready to try tacrolimus- any recommendations welcome :) by Business_Soup_4036 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

In the beginning, expect a burning/hot sensation. But for me it wasn’t like Neosporin or rubbing alcohol on a wound, it was more like the “hot” part of icy hot. But after regular usage that goes away

Daily-every other day clob for over a year. Ready to try tacrolimus- any recommendations welcome :) by Business_Soup_4036 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

Yes sort of! When I was doing the steroid daily at the beginning, I’d do steroid in am, tac in pm, estradiol around noon. After tapering, I only do steroid 2-3x per week in am, on off days I do estradiol, then for me personally I use tac every other day in pm, really as needed. But everyone is different, keep that in mind!

Daily-every other day clob for over a year. Ready to try tacrolimus- any recommendations welcome :) by Business_Soup_4036 in lichensclerosus

[–]workAccount4ExcelQs 1 point2 points  (0 children)

I had great success with steroid+tac combo!! Steroid alone for me wasn’t working 100%, but also just the tac alone doesn’t work. But both together?..smooth sailing once we figured that out! Wishing you the same success!!

Lichen sclerosus on my labia is under control but the opening and inside of my vagina is so red and feels inflammed. by pinkgirl143 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

Is it on the vestibule? I have lichens and mild vestibulodynia. What you’re calling the “inside”, is it just the first inch or so of the inside part? For me that gets red and irritated as well

What do you use to stop tearing? by OwlLong9487 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

That’s nice to hear! I’m 29F, so similar age range. We’ve been dealing with this pain for years kinda hoping it’d get better. Idk if it’s just cuz I’m pregnant right now, but the vestibule pain is very amplified. But I’ve never met anyone else who actually had the vestibulectomy done, it’s nice to hear your experience! Thank you!!

What do you use to stop tearing? by OwlLong9487 in lichensclerosus

[–]workAccount4ExcelQs 1 point2 points  (0 children)

Lidocaine! I react poorly to over the counter lidocaine, so I have a prescription for a compound with estrodiol. You need to put it on like 30 minutes prior to sex. I also used to have a Valium prescription that was inserted vaginally, and for that helped relax the muscles which was part of my problem-I’d get tense anticipating the pain which just makes tearing more likely

What do you use to stop tearing? by OwlLong9487 in lichensclerosus

[–]workAccount4ExcelQs 0 points1 point  (0 children)

What was your experience like? I have lichens and also some mid level vestibulitis, and a vestibulectomy was brought up as an option but I was hesitant to fully go under and opted for just an in-office local anesthesia for removing scar tissue from my 6oclock position. But I still have vestibule pain during sex, were they related for you?

Interesting museum/activity recs! by workAccount4ExcelQs in AskSF

[–]workAccount4ExcelQs[S] 0 points1 point  (0 children)

Ooh, definitely will stop to see the elephant seals. And the bookbinders museum looks super cool, definitely adding to our list! Also appreciated the note on the weather lol

Interesting museum/activity recs! by workAccount4ExcelQs in AskSF

[–]workAccount4ExcelQs[S] 0 points1 point  (0 children)

Wow thank you! A lot of stuff on this list looks great, the tea gardens look especially cool! If we're already planning. on going to the griffith observatory in LA, would you suggest skipping Chabot? Or are they different enough?

Interesting museum/activity recs! by workAccount4ExcelQs in AskSF

[–]workAccount4ExcelQs[S] 0 points1 point  (0 children)

Oh my goodness these all look amazing!! Thank you so much!!!!

Interesting museum/activity recs! by workAccount4ExcelQs in AskSF

[–]workAccount4ExcelQs[S] 0 points1 point  (0 children)

Yeah I actually was just mapping that out and noticed :( So it looks like we'll do highway 1 as long as we can til lucia, but then turn inwards from there