hi all, so about a month ago i was experiencing some pain down there after sex, this was the first time I’ve had sex in 5 years so at first i put the pain down to that, i felt really bruised and it hurt to even pee so I thought I should have a look, well i was shocked when i saw a white and black growth below the vaginal opening and going all the way back to my bum, there was also a red raw patch just inside the opening, I booked straight in with the gp because since age 20 I’ve had gynaecology problems (I’m now 35), the gp had a look and said she was referring me straight to the hospital, while i was there she tried to do a smear test (stupidly I’ve missed my last 2 yearly appointments) but the pain was excruciating so she had to stop, the hospital rang me the next morning and booked me in for the 4th of july. I went to the appointment and the dr was lovely and asked if she could examine me, she took one look and said we need to biopsy now, she also wanted to do a smear test before, again it was excruciating but she managed to do it then started on the biopsy, once she was done she walked out the room and left me with 2 lovely nurses who said to me to ignore the mess on the bed when i get up, i had lost a lot of blood and the bed was covered and it was all down my legs everywhere, i had also been stitched to stop the bleeding, I cleaned myself up eventually and went into the room and the dr wouldn’t even look at me! She just said it will take 2 to 3 weeks for the results and we will write to you then ushered me out! Obviously I felt really confused because beforehand she had been lovely, she didn’t tell me how to look after the stitches or if they are even dissolvable! So last Tuesday i had a letter with the smear results, this said the cells from my cervix appear normal however the dr had requested I have a colposcopy to have a more detailed look at my cervix? This has confused me because if it’s normal why do they need to investigate further? I’ve had many colposcopies so know what these are for and can’t see a reason to have one now. I then had a copy of the letter that the dr sent to my gp, she has lied in this letter and said she examined my abdomen and it was soft and non tender, not once did she examine it because if she had she would have felt the lumps i have and it is very tender! She also mentioned that my weight made examination hard! She never said anything to me about my weight and im 14 stone not exactly massive! She described the growth as being 1cm x 2cm and it’s white,thickened and raised/rough. Does this sound like any of your cancers/vin? I’m still anxiously waiting to hear from them about the biopsy, but I don’t know if they will write with the results or call me because she didn’t make anything clear? Since the biopsy the growth has got bigger and looks a lot darker so obviously I’m really concerned, i also have rheumatoid arthritis and I’ve since read that this can contribute to cancer so I’m concerned about that to. so sorry for the long post but my as you all know the waiting is awful. I honestly feel like I’m not being told something, I just want to know what I’m facing so i can fight whatever it is! Thanks x
That first appointment is really hard. I have a lovely consultant who has discussed everything with me. My advice is write down questions before you go back and tick off the list as your questions are answered. Even so it is very hard to know what to expect. I am 75 and have learnt over the years it is important to have enough knowledge to feel comfortable.
Let us all know how you get on
Jody83, I sure hope you get your biopsy results sooner than later. Perhaps when she said she still wants a colposcopy it didn't mean of your cervix it means your vulva area and or the areas where the skin changes are. I agree that you should write all of your questions down and especially point out the growth that has gotten bigger.
Please keep us posted.Lisa
Thank you for replying, it’s been 15 days since the biopsy, still no results but i had a txt message this morning saying I have an appointment on Thursday, I called the hospital to ask who the appointment is with as I hadn’t had a letter and it’s with gynaecology. I’ve had a letter this afternoon with the appointment and looks like im seeing the consultant so obviously I’m now thinking it’s not going to be good news because she hasn’t wrote to me with the results just sent me an appointment, obviously I’m even more anxious now x
Do not worry, I only get appointments letters also. I think it is probably the best protocol to be told face to face, good or bad. Take someone with you if you can, it is easier to check you have remembered any information fully. I also write down a list of questions. Fingers crossed for next Thursday.
Ugh another week to wait; that is a very long time and I feel so bad for you, I know how your mind must be racing. Please try to not let your thoughts consume you. We will be here waiting for your results with you.
I’m really trying to stay positive and keep telling myself it’s probably just VIN, at age 20 i had to have a operation to remove cin3 from my cervix and vaginal wall, then again when i was 22 then when i was 25 i was found to have cin3 cin2 and surface cancer on my cervix and the consultant told me I wouldn’t be able to have more children because they needed to take 10mm of my cervix, then 3 years ago i had to have womb biopsies so I’ve had a lot of gynae problems over the years and when i think back I always had the biopsy results in a letter but not this time, once I know what I’m dealing with I will feel better it’s just the not knowing that is hard, I really appreciate your replies and kind words because you are the only ones who understands right now, my friends try to but when they keep saying “it will be fine” or “if it was bad news they wouldn’t wait this long” it really doesn’t help, i want them to face up to the fact that it could be cancer not just tell me it will all be ok. Sorry for the long post again i get carried away sometimes x
Hello jody83 I have read your story and can really relate to how you are feeling. I’ve been diagnosed with cin3 through my 20’s and then ain3 when I was 31 and vin3 at 32. I had vulva cancer In 2015 where I had a wide local excision and have continued to have operations for vin3 every 4 months. Like you I found the waiting really traumatic because of the not knowing. I’m generally a strong person so I don’t like to come across as ‘weak’ which is ridiculous. No one can understand what you are going through unless they have been through it themselves. Your friends and family sound like they are just trying to keep it positive for you because that’s truly what they are hoping for, for you. I can only suggest ringing the hospital and chasing them up for your results. Explain to them how you are feeling. Do you write a diary? Or do you have any interests where you can express your frustrations like art? There is no right way or easy way and I totally appreciate how much the waiting will be driving you mad but please try to stay positive. There is a saying that I tell myself which may or may not help you... worry is the interest paid on a debt you may never owe... try to live in the moment and stay busy. I know you might find it exhausting to socialise with this looming over you but honestly even a few hours that help you forget can be great for your wellbeing. I hope this helps you a little and good luck with your journey. If you ever want to talk I’m more than happy to listen. Stay strong
Jodspods83 thank you for replying, I’m the same I don’t like to look weak, I’m not one for showing emotion to anyone apart from my 2 children, I think the worse part is knowing that the consultant planned to write to me with the results of the biopsy but she hasn’t and has just sent me an appointment, obviously this to me indicates whatever she has found needs to be discussed face to face. I haven’t yet been contacted with a colposcopy appointment either which i find strange seeing as the letter said I needed to have one? It’s the lack of communication that bothers me, if i was kept informed I would feel better. To everyone else i seem ok, my mum cries every time she sees me or speaks to me as does my brother, they are acting like I’m about to die, i can understand it of my brother because our dad died very suddenly last year and I’m all he has left (we have different mums), I helped my dad to raise him so he looks to me like a mum so I know this is hard on him but it’s hard to convince him I will be ok when I don’t even know what I’m dealing with! Thursday can’t come quick enough to be honest, I’ve arranged a friend to come with me and made sure my mum still went on holiday and told her I will call her soon as I know anything. Once I know anymore I will update you all but thank you again for allowing me to rant and for the support xx
New development, last night i was having a bath and when washing down there i felt a lump, i had a look once out the bath and just inside my vaginal opening is a big lump,it doesn’t feel hard it feels squishy but non painful, i now also have white patches round the inner labia and clitoris, will inform the consultant about these when i see her x
Just wanted to update you all, i saw the consultant today, she said the bit they biopsied showed VIN 3, I’ve got to have surgery but she said it’s going to be extensive because of the amount that needs taking away and they want to get clear margins (it goes from above my vaginal opening, all the perineum and towards my bum), she said once it’s been taken away it will be biopsied again to check if there was any cancer, the new lump inside my vagina will also be biopsied while I’m under and anything else suspicious will be taken away (i now have white patches around my clitoris). She said there is a high chance of it returning especially with my history of gynaecology issues, honestly don’t know how I feel right now but thank you for all the support xx
I’ve been suffering with this now for ten years you do have to remain positive and fight fight fight because this will get you down but don’t let it beat you. I know how hard this time can feel but trust me a positive mind really helps. Have you had the hpv vaccination? Coz if you haven’t I’d recommend getting it after you recover from surgery as it can reduce the risk of reoccurrence in the future. Good luck on your journey xxx
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