Can I save my clitoris

Hi Marnee and welcome to the group.

I’m sorry to read you’ve had this diagnosis, and I can appreciate you may want a second opinion before proceeding with your proposed surgery. Your surgeon will want to try to achieve clear margins, and how that can be done will depends on the exact location of the area to be removed.

I’m going to tag Nicbo72 and Ex Lancashire Lass who have gone through surgery and might be able to offer some insight for you. 

This link also gives guidance on seeking a second opinion

Getting a second Opinion

Please let us know how you’ve got on, as there will be support here for you in the group.

Sarah xx

Hi Marnee 

I'm do sorry yout going through this!!

I actually went in for an extensive WLE but when I woke from my operation I'd had an anterior/ hemmivulvectomy! My clitoris and right labia minora were removed (as well as the top part of my vulva) to say it was a shock was an understatement!! I'm 51, happily married and it's totally knocked me for six as I wasn't expecting such radical surgery!! I was warned that if they suspected invasive cancer they'd have to go deeper and wider so for 3 weeks after my surgery I just presumed that cancer was found, then when my results came in it was VIN3!

What I will say is, they say it's slow growing but my VIN turned from 2 to 3 from March until June and I went for my 3 month post op appointment 6th September and am now waiting on biopsy results from 2 more suspious areas! I now have a very strange lump on my one remaining labia! I also have 2 lumps by my vaginal opening! My gp wasn't sure if I'd got an infection or if the biopsy had seriously aggravated what they biopsied but for 2 weeks I was in so much pain, he did give me a course of antibiotics which has took down the swelling but I'm still very uncomfortable!

Speak to your consultant  and get your second opinion but please don't leave it too long! 

I suppose what I'm trying to say is do what feels right for you but please don't put your life at risk! 

Let us know how you get on, and whatever you do decide we'll all be here to support you x

Thanks, for you candid response, it's helpful to hear from others going through it, and my thoughts and prayers are with as we navigate these uncharted waters.

Good luck x

My next question is around my consent, I've yet to sign the consent forms, and would like it stated on their that although I give the surgeon consent to operate on the lesion I wish him to do everything in his power to save my clitoris. 

I was thinking about wording it in such a way to appeal to his ego and challenge him to save it, with his skill and precision, and if anyone can advise me the best way to do this, rather than alienate him, bring him on side.

Advise welcome, I had my pre-op yesterday and operation booked in for next Thursday 

Hello Marnee,

I am also so sorry you have to go through this.  Like you, it was a real shock, firstly the diagnosis and secondly the radical operation.

My surgeon explained everything and said the best outcome would be a wide local excision, including labia major and minor as well as the clitoris and bilateral lymph nodes, which is what he did.  Plus a clear margin.  Fortunately, the cancer was all removed and no further treatment was necessary.  Of course it hit me psychologically, no longer feeling like a female and, missing my clitoris, but I am still here to tell the tale.

If you can discuss your feelings with your consultant/surgeon or a Macmillan nurse, then do, they may help you decide what to do.  For my part, I am relieved that they did what they did.  But I do miss my clitoris!!!  That is just my personal opinion though.  

I hope this helps you with your decision but don’t risk your life.

sending you very best wishes, Elaine

Hi Marnee, I hope your operation went as you'd liked and your not in too much pain, thinking of you and sending healing hugs  

Hi, 

Result 50% clitoris saved, by explaining the importance to my surgeon who work with me and was able to save as much tissue as possible, I honestly believe he would've removed it all if I hadn't expressed my desires so glad that I spoke up.

From talking to Macmillan nurses, was told that if I wanted a 2nd opinion,  it was no use to go back to the consultant as he would be of the same opinion as the surgeon,  and I was to go through my GP. I wrote an email to my GP stating I wanted to discuss saving my clitoris.  A call with my GP was arranged, and I spoke to her, expressed my desire to keep it. We discussed a 2nd opinion and concluded that was probably not the best route, and decided instead that she would speak/write to my consultant about the issue. She did, and it resulted in a letter between them where it was stated the clitoris will be removed due to the margin area.

I had my operation yesterday, I stated on my consent form that I would really like to save my clitoris if possible, and if there was any way within his realm to save it, i would like him to.

the next time i had a chance to speak to him was in the aenistists bay, on the way into the operation, he said that if its within the margin he would have to remove it, whilst under anesthetic he dyed the cells and he was able to save half, and I think if I hadn't pushed for it he would've probably removed it all.

So i feel pleased that I stated my desires and the consultant knew it was important and we reached a mutually satisfactory result, of which I am pleased I spoke up, rather than leave it until it was too late.

Thank you everyone and I would encourage people to speak up, it's embarrassing for us, but to a gynecologist surgereon just all part of the job.

Good luck all x

I have refused treatment because the surgery is so invasive. I cannot face losing my clitoris. Does anyone else feel the same?

Hello Xquisite,

I respect your decision for that is your choice to make.  As for me, I was guided by my surgeon and his expertise.  He thought the best option was to remove my clitoris which was next to the cancerous area and it was within the clear margins.  My radical vulvectomy was successful and all the margins were clear of cancer, meaning that no further treatment was necessary, this was 16 months ago and all is healing and I am feeling great.  I am glad I took his advice for, although my clitoris is a loss, at least I am cancer free, which makes it all worthwhile.  

You just have to weigh up the pros and cons and what works for you.  Will you need any treatment?

Wishing you a great outcome.

Hi Marnee

I'm so glad that you advocated for yourself and got the best outcome that was possible! It's frustrating that we have to advocate for ourselves like we do and feel like we're not being listened to! 

My biopsies came back VIN3 again and my surgery is booked in for 15th November! I did point this area out at the end of May before my last surgery in June to my consultant but he said it looked perfectly normal...I knew it wasn't! 

After speaking to the lovely nurse and explaining everything that's happened at my pre-op on Saturday she's got me in to see a different gynae/oncologist next Tuesday 29/10, she doesn't want me waking after this surgery to find out I've had a much larger surgery than I was expecting and to see what's actually happening with the one labia minora I have left. The biopsy on that area came back clear but there's something definately not right there, it's thick, rough, bumpy and I have a strange little lump growing out of it! I wish I could take that nurse into my appointment with me!!

I actually want them to remove anything they think is suspicious this time because I can't keep going through this every few months, it's so soul destroying!!

I hope your healing well and starting to feel a bit more normal in yourself, take care xx

Hi Xplicite

At the end of the day it really is your decision, I didn't have a choice unfortunately, I woke from my surgery back in June after going in for a WLE to find I'd had an anterior hemivulvectomy, all the top half, including my clitoris and right labia minora was removed!! 

It was a total shock and it's taking a while to come to terms with it! 

I'm in a couple of private support groups though and after seeing what other ladies have and are going through with vulva cancer I know that if I'd been told they were going to remove my clitoris I'd have consented, the thought of chemo/radiotherapy terrifies me! 

We're all different in how we respond to treatment for VIN, mine seems to be very aggressive and growing fast, every time i have biopsies it seems to aggravate it! I'll do whatever it takes to stop it from turning to cancer because although we're told its slow growing from what I'm seeing in my groups that's very often not the case! 

Mine all started on my cervix, it can spread to the vagina and the anus, I personally don't want to take that risk! Please speak to a specialist nurse, join some support groups etc and get all the information you can before you make a final decision, read some of the older threads on this group, there's a couple of ladies that have said you can still enjoy intercourse, your clitoris isn't just on the surface so you can still get some sensation...this has given me hope! 

Whatever you finally decide I really hope it's the right one for you xx