I had another biopsy 2 weeks ago on my clitros hood and came back vin 3 they are now going to try imiquimod cream which I understand can be painful but if doesnt work I could lose my clitros. I was hoping there was someone that is or have been in my situation. Thank you x
I too have had LS and VIn 3. I had steroid cream initially for LS, then went to dermatology where l had a biopsy and VIN 3 was diagnosed. I had surgery too, (Oct 18)which was quite radical and took a long time to heal. Unfortunately l am now waiting to see gynaecology on 5th Feb as l am experiencing signs/symptoms at my clitoris again. Not used the cream that you have named. Sorry l'm not much help xx
I have used steroid creams too. I saw gynecologist Monday who has said that they want to try cream imiquimod to prevent more surgery but if I cant tolerate the cream then it will be surgery I am going to start treatment on 10th February dermatology were talking about this cream to try me on too. I live in norfolk so was wondering how different consultant work in different areas xx
I am in Fife, Scotland. The consultant l see is so, so nice. She takes her time with you at appointment. So never feel rushed and l feel l can ask her anything and not feel dumb asking. No question ever seems to much for her to answer. Also my appointment with her this year wasn't meant to be until May but l can call her secretary anytime to get an appointment if need be, as l had to do a week ago. Hope the cream will not be too painful and it's a success xx
I haven't had the imiquimob treatment myself, but read a lot of positive stuff about it, in the emotional aftermath of various similar diagnoses and vulva surgeries. At the time i was hoping it would be there as an alternative to surgery if i got further vin3 lesions. Im currently waiting for further biopsy results which is why your own situation especially struck a chord with me.
Im 2 years in from first diagnosis and surgery for vulvar tumour and vin3. I have extensive advanced LS which was diagnosed at the same time. I use steroid and oestrogen all the time. My bits and bobs especially clitoral hood are badly impacted by the LS.
Its pretty tough to go through this stuff but an extra level of rot and strife when our significant structures are in the firing line.
I think it sounds really positive that your doc wants to try this stuff and i truly hope you respond well and it works its magic.
I tried imiquimob cream. Not very successful I am still using it on my clitros hood, But had to stop other areas as I blistered. Which was very painful
I had my fourth lot of surgery on Wednesday 22nd April to get rid of rest vin3. For now. Just recovering at home a bit uncomfortable but that's to be expected.
I was just reading your thread. I hope you're surgery went well and you are well rested.
i was diagnosed with pagets disease of the vuvla. And am also using imiquimod. i was wondering how others are finding it? I've been using it since the end of February. Ive had to stop a couple of times due to painful swelling and also ulcerations. Ive now missed 4/16 weeks as a result. I have widespread pagets so am applying it to the whole vuvla area.
Just wondered how you or others were managing the side effects?
I have been back to hospital for follow up to operation in April. They are Happy with the healing. But I have vin3 on my clitros hood I have re started imiquimod cream again I struggle with this as soon as I go twice a week it becomes very swollen sore and so uncomfortable ulcerates I speak with my specialist nurse a lot as I find when using the cream I get that I dont want to get out of bed I am very tearful and I find myself feeling very panicky inside. She said it is a powerful cream and it can make some ladys feel like this. I am trying hard to keep using the cream as they have said if it dint work this time I am looking at losing my clitros.
I was wondering if anyone feels the same as me using imiquimod cream. I feel so down when using .
I’m using the cream at the moment and I’m also feeling low and tearful. I’m actually getting on my own nerves. It’s so hard. I’m suffering with pain and irritation mostly. I hate Monday’s, Wednesday and Fridays now that’s the cream nights. Putting it on is a constant reminder of this bloody awful condition. The positive is the holding on to the long term goal which is helping or better still getting rid of the condition and kick starting your immune system. I have VIN3 had a wide local excision and I’ve got another procedure on Wednesday to see if I have AIN. I’ve actually started antidepressants as I’ve never felt so low. I’m also starting talking therapies to see if I can find ways to cope. See if I can help with the unhelpful thoughts that I have. I wish I could be a positive person but it’s really difficult. I’m also trying breathing exercises by Wim Hof. Apparently it’s supposed to kick start your immune system. I will try anything. You should read some of the stories on here they are really helpful. Your not alone. Take care
