You're not alone. I have a friend who has lichen sclerosis - has that been considered?!

ive just posted on the same subject - I have a large, nasty-looking mole on one labia and I am absolutely terrified. I'm on a two week referral (as far as possible during a pandemic) and the waiting is horrendous. Both my parents have had melanoma so it's extremely worrying. 
 

I know what you mean about dreading the biopsy but eager for it. I just want to know what I'm facing. 
 

Hope you're doing OK!

Thanks so much for coming back to me Caitlyn9145. Good to know I'm not alone, but at the same time I;m sorry we're both experiencing this! 

I have had an appointment with the Gynae about 6 months ago (I was initially referred because my GP had said they thought it was a lichen) but on examination the consultant said it wasn't that. There's part of me that had hoped that may have been the case, as horrible as lichen sclerosis is, just so I had an answer but instead was prescribed the Estriol as I think they thought it may be something to do with dryness/lack of eostrogen but the cream unfortunately (and frustratingly) made no difference.

The not knowing is so hard - you're absolutely right, it's wanting to know what you're facing and how you can get through it. I hope your two week referral comes round quickly so you can have some answers / peace of mind soon. In the meantime hope you're managing to find some distractions to pass the time. I feel I spend a lot of time in bed just staring at the ceiling thinking about it, so trying really hard to distract myself / pass the waiting time.

Hope you are doing ok too. 

Hi ladies, 

I have had itching since mid January and on Saturday I found a small pea sized lump on my labia majora (lips). I can totally relate to this worry! I know this post is 2months old but I'm so scared. I am waiting for a call back from my doctors surgery today. I am 34 so apparently too young for this but I too cannot see any other cause as it's not a painful lump so pretty sure it's not a cyst especially with the itching lasting this long! Itching is mainly when I am hot but it should be gone by now having ruled out irritants or dry skin. I had thrush detected but the cream hasn't helped one but even after a fortnight! I have no abnormal discharge at all, no pain when urinating and my discharge doesn't have a strong fishy smell either. I'm beside myself with worry and have a husband and a 5 year old daughter. I'm not working so at home on my own during lockdown trying to keep myself busy! I can't stop crying every time I sit down. I can't see the lump and it's hard to find it at first with my hairs, even having trimmed! It was when I trimmed and put cream on that I found it which is worrying as it could have been there for ages! I'm so scared :(

Ajc86 I'm so sorry you're experiencing this. It's just a constant reminder sitting down isn't it :cry: Really hope your call with your GP has helped and they're supporting you with next steps to find out what's going on. Keeping busy and distractions definitely help me so I hope they're helping you too. I just want you to know that you are not alone. I started the post 2 months ago and the ball is rolling but my appointment for the biopsy results isn't until next month due to the impact of Covid. Its just hanging over me every day and I feel more worried the closer to the appointment I get. If you ever need to talk or share your journey, I'm happy to support / share where I can, but hopefully you can get to the bottom of it quickly. My consultant said there are loads of different things this kind of itching can be, so try not to worry about the worse case scenario (I know that's so much easier said than done) too much. Lots of love 

Thank you so much for replying. I won't get a call back until Monday 29th which is too long for me really. But hey ho. I will definitely take you up on that offer as I don't really want to talk to family members about it so this is the best place. My lump is very small and very hard to find today but still there. It's my hairs that get in the way trying to find it. It moves with my skin tissue I guess it's moveable. I can pinch it so nothing underneath, seems to be directly under the surface of the skin. Thank you for the support it's nice we can supoort each other on here xx

Hi,

This is my first post but I wanted to join in on this thread as I'm in a really similar position to you all! I'm also having a really hard time trying to function with the worry. 

I have had itchiness in my vulva for over 18 months, it's daily but not all the time, and hasn't really gotten better or worse during this time. It's more on the left side (on the labia minora, majora & clitoris). 

I had a baby at the start of the year, and through the pregnancy (most of 2020!) I have been trying to get to the bottom of the issue. I've been prescribed all types of creams, including steroid creams, which never worked. The nurse, GP and gyno said they couldn't see anything, the only thing anyone noted was that it looked a little inflamed. 

Well on Monday I had an appt with a dertmatologist which I had pushed for, to look at the area (also had a mole to look at in another area, that's another story.. :( ). On the day of the appt I somehow found a lump when showering, on the right side of my labia majora, almost where it joins to my leg/groin. I couldn't believe I'd missed it - it's hard, about the size of a pea, and feels fixed to the skin but movable underneath, if that makes sense. 

The dermatologist couldn't work out what the lump was, after poking and prodding a lot (which was quite sore), she suggested the best thing would be to have an ultrasound to check. That was last Monday, and I'm yet to get a letter or anything for the referral, though I checked today with the radiology dept and they told me they'd recieved the referral, but as it was with a consultant it hasn't been booked yet. She did say there were two scans they were doing, one of the pelvis and one of the groin.

I feel horrible. I suffer with health anxiety anyway, and now I actually have something going on I just can't deal with it. I have a baby girl and now having recovered from a c-section was looking forward to time with her seeing her grow. I just keep crying when my imagination spirals out of control.

I have a double mole exicion booked for next wednesday too - other things that came out of the appointment so my head is just spinning with everything going on.

I know there's no diagnosis yet and it could be benign, but I just can't help panicking. 

I just wanted to connect with others in a similar position.

x

Hello, 

I'm sorry you are going through this, I found a lump last Saturday, the size of a pea next to my clitoris on the labia majora and I was so scared, so I know how you feel. I've had the itching since January and similar to you it's mainly at night or when I am hot. Currently been trying sudocrem, drapolene, thrush cream as swab came back positive, but the cream hasn't worked so to be another swab. The lump then dissapppered on Tuesday afternoon. It was hard, moved with my skin, I could pinch tissue underneath it so was just under the skin. The itching was nowhere near it either. So I am thinking it was a spot like the ones you get on your face that you can't always see, the ones that sometimes hurt. I had been smothering creams on for while so could have had blocked pores. 

It's such a worry isn't it. I was told it is incredibly rare to have vulval cancer this young. I also cried a lot when I found my lump, when you have kids you worry about them aswell as your own health so it's overwhelming. 

Thinking of you and hoping you have answers soon xx

So sorry for not coming back to you sooner. The Google issue happened and I couldn't get into the site! AjC86 - Only a few days left - you're nearly there, and fingers crossed for some answers. If you feel comfortable to, do let us know how you get on. Sending much love!

II's such a relief to not be alone but sorry we're all experiencing this.

I have an update following my biopsy which was no abnormal cells. I'm relieved but confused as still don't know or understand what's causing it. I have my next meeting with the consultant next month and suspect I'll be referred to a skin specialist.  Hope to hear from you all soon and any updates. I know its easy to say but stay strong ladies. I've been hugging my baby bear a little closer tonight for bedtime 

Thank you for your reply! None of my (many) tests for thrush or BV came back positive, but even at my appointment on Monday she still did a swab for thrush, but I'd be amazed if it comes back as positive! She also gave me more swabs to do myself when it 'fares up', which I will need to drop off at the hospital next week.

Interesting that you had a lump too, but good it's gone down! I can also pinch mine from underneath but it feels attached to the skin, it's hard to work out really but I guess that's what the ultrasound will be for. I felt like I wanted to ignore it until then but seeing as I'm worrying anyway I guess I may aswell keep checking the size in case it changes just in case.

Yeah it's so overwhelming especially now so with a baby, a lot to think about!

Thank you & thinking of you also - its really helpful to have others in the same boat x

That's such good news about your biopsy! Although there's still some confusion about the cause of the symptoms, that must be a big relief. 

I'll definitely be posting any updates as they happen, it's cathartic to have the chance to write everything out and speak to others with the same experiences! 

x