Just a follow up on this post in case anyone comes across it.

at my doctors appointment on the 17th I was referred to a gynaecologist consultant - I’m still waiting for the appointment to come through but will be chasing up as my symptoms have become worse. Itching down below is close to unbearable and the skin around my vulva has become very dark red and sore to the touch. The cyst is still very much present and seems to have grown again. No pain with this still. Pain has however started in my bottom and I am now bleeding when I go to the toilet. It’s definitely getting worse so I will be contacting the dr as I was told to if symptoms get worse before my appointment comes through. I’m getting really worried about this and it’s starting to impact on my daily life. Would really appreciate if anyone has had any similar experiences. 

Hi, saw you didn't have any replies! I'm going through something very similar. I've had this lump on my vulva for I think around 2 years now, potentially longer, and for years before that I've had itchy skin on top of my labia majora that is often cracking/bleeding/coming off. I also told myself it was a Bartholin cyst but didn't go to the doctor. Though I realise now it's not in the right location for that. More recently it's become a kind of white colour, the skin is broken and rough and it bleeds on and off which has also made me worry about vulva cancer. I'm nervous because I know that because it's itchy I do scratch/prod more than I should and I'm scared the nurse/doctor will just say I've somehow caused it myself?! But it's already been at least 2 years and I've finally made myself talk about it because it's definitely not normal. This might sound really odd but I just couldn't imagine *me* having cancer? I know cancer can and does affect anyone (I'm training as a doctor myself) but pretty much every time I've been to the doctor before it's turned out to be nothing and the symptoms can be attributed to something else but these symptoms are a bit more worrying. I have a virtual appointment tomorrow morning and I'm hoping they'll refer me to gynae and I won't have to wait too long because I'm worried. Have you had any more developments since your last post?

All the best

hi! 
 

Completely get where you're coming from, it took me ages to get around to going to the docs - I always felt like I'd be wasting their time and they'd just brush me off. 
 

I had my gynae appointment and they referred me to another consultant, I've been waiting to be seen since last year due to COVID. They called me last week to ask if my symptoms had changed, and they haven't really, if anything they've gotten worse, although the lump hasn't gotten any bigger. It seems like it's nowhere near to 'popping' or moving closer to the skin, so it does worry me about how it's just there but I'm trying not to panic myself too much. I've also developed incredibly sharp abdominal cramps which are worrying me a bit - they make me lose my breath and double over when they hit and don't seem connected to anything like my period etc. Annoyingly I forgot to mention this to the nurse when she called as I was in the middle of work and a bit distracted! I've also developed several cyst like bumps on the external vulva over recent months, all of which have popped (gross, I know). 
 

Can I ask a really nosy question about where your lump is? (Please don't feel you have to answer this). Mine is just on the inside of the entrance to my vagina, so it's not technically on the outside. 
 

Very best of luck for your appointment tomorrow, I hope you'll come back and say how it goes :) two years is definitely not right so I really hope they listen and refer you on so you can hopefully put your mind to rest.  
 

X

Interesting what you said about little cyst things, I've had quite a few of those over the years but they've always just popped within a day or two. Naturally I thought this was the same so ashamedly I've tried to pop it many times but this one's different for sure!

Haha being nosy is fine, that's what being anon is all about! It's nice to have somewhere to openly talk about this. 

My lump is at the top of the vulva on the labia majora, like to the right of the clitoris if that makes sense?

I'm worried if it is anything that it could have spread to my vagina, I haven't had any bleeding or anything but the last few months I've not been able to tolerate sex at all due to pain 

Hi both!

I can relate so much to this post, thanks for sharing.

Have noticed changes in the skin for over the last 8 months, particularly getting worse since the start of my first pregnancy (now 5 months). Raised white patches, inflamed, often itchy, a persistent small lump I've had for years, no blood either. Bump is in labia majora right, about the size of a small pea, not painful. 

I've only just googled the symptoms and worried it could be vulvar cancer. Having a nurse look at it on Monday.

The stress that has hit me is unimaginable.

I'm really shocked that the NHS have made you wait years!

Best of luck to both of you! 

I can relate so much to what you just said!! It was all a bit of a mess the last week, I saw a GP who just did a standard referral said I'd have to wait a few months which I didn't feel was right, then it got changed to urgent because on review a more senior GP said that it needed to be seen in the urgent 2 week wait clinic. I had that appointment at the clinic yesterday and I hate to say it but it was so disheartening. She spent no more than 5 minutes with me, barely felt the lump and then said "it's just thickened skin", and I said to her "there is definitely a lump there, the GP could also feel a hard lump" she wouldn't let me show her or feel again, just said "no it's definitely not" - and I know I'm not making this up. I was also having severe pain on sex and abdominal pain that correlated with an ovarian cyst which of course could be unrelated but vulval cancer can spread to the vagina so what if it was that - she didn't want to hear about it, didn't even do an internal exam. She said I can come back to see her in her vulval clinic in 3 months or so and maybe she can think about taking it out/doing a biopsy then. I left crying to be honest, I felt very dismissed. My dad has insisted on me getting another opinion now, privately. I really didn't want to have to go that way and I thought the urgent referral would mean I'd be looked after and sorted out but I felt worse when I came out yesterday than when I went in. Of course I know it's unlikely to be anything serious but I want to feel like someone has actually listened to my concerns and actually taken time to PROPERLY look at it etc and not just dismiss me because I'm young. So that new appointment is Tuesday 30th of March so I've just got to hold on to my nerves till then.

That sounds awful! I'm sorry to hear that's how you've been treated at this obviously stressful time. You should certainly push them again and stand your ground because your peace of mind is really important. My dad has been an NHS doctor for years and says that pestering is the only way things get done because they run on stats and stats will tell them that you're low risk.

I hope you're able to keep distracted over the next week before your appointment and feel free to share how it goes if you'd like to, no pressure. 

I'll be reporting back on Monday.

Xx

Hi sorry to jump in on this post; I have spent all morning searching the forum for people who have the same symptoms as me; and finally I found someone. My itching started in January, had a yeast infection diagnosed and cream hasn't worked. However I think I cause the yeast infection because I was trying to calm the itching by using femfresh wipes and putting sudocrem on, drapolene; vasoline and nothing worked. I then found a pea sized lump level with my clitoris on my labia majora. It moves with my skin, hard to see so you have to hunt for it even having trimmed recently as I thought the hairs were absorbing my anti fungal cream, no pain with it. Cream hasn't worked after a fortnight so it can't be a yeast infection anymore. I'm worried sick. I have no pain at all, no abnormal discharge or spotting. The itching is now waking me up at night so I'm exhausted. It's mainly when I am hot. I am 34; married with a 5 year old daughter. I have to wait a week for my gp appointment to discuss it further. I'm scared of the biopsy, the treatment, telling family, everything. I am 90 percent sure it's vulvar cancer with the two symptoms combined. The lump is too high for a gland cyst just like you say so it is incredibly worrying. I hope we can all stick together and help each other through this. Sending you hugs xx

Oh my goodness I could've written this myself! 

Thank you for being so open and honest about your experience, can I ask, how are you feeling now?

I too am sitting here fighting the urge to scratch, the itching is just unbearable these days. I too have found blood spots in the toilet, very unsettling to say the least. I haven't been able to get through the day without a nap for well over a year now, even during lockdown when nothing particularly strenuous was happening. My lump/s are both "thickening of skin" and what I had always thought were Bartholins cysts, but having done so much research now I am questioning whether they are or not because I have had them for so long and one in particular is just getting bigger. Size wise, I would say between a pea and a marble, hard and not painful to the touch. 

I also get the sharp pains you mention in your later reply, I would describe it as being ovarian, but I'm no doctor! I've been booked in for an ultrasound on 28th April and gynae on 13th May, but I'm not happy to wait that long for the gynae, so I'm going to phone up after the Easter weekend. Maybe I'm being too pushy? But I just can't sleep for worry at the moment. I lay in bed and all I can think about is how I'm going to tell my kids (7, 5) that I'm dying!! And let's be honest, I'm not dying yet! 

Thanks for letting me vent xx