Radical vulvectomy

Hi Paddie, 

I can relate to feeling like this.

14 years on & it’s still going on inside my head, the side effects over the years & they continue to produce new ones xxx

Hi Paddie and Juliam1

I think I can relate to what you are writing and feeling: So far I have had many ' wide local excisions' for vulval cancel. The last one was a hemi vulvectomy but now I'm facing something called ' Total Exenteration'. Basically they are going to turn me into Barbie with two stomas. The only curative procedure they can think of is cutting out my complete vulva and clitoris, vagina, uterus, bladder, rectum and anus. They will take huge areas of skin from my thighs and buttocks to close the wound. Complications abound. I will have a 50% chance of survival but a lot of pain and suffering.I don't know whether to accept this or take a trip to Switzerland. Who wants to end their life like Barbie with a bag of poo and another of urine sitting on their tummy?Grieving for the loss of my sexuality is just one aspect of the dilemma before me.

I am sorry to vent like this, but I can find no other forum for this. I went to a support group for women with gynae oncology but the worst that had happened to any of the group was a temporary nloss if hair and a hysterectomy. I said nothing as I didn't wish to frighten them.

Moderator: if you think this entry is too strong please cancel it but let me know where I am able to post such anguish.y situation seems rare.

Dannelchen 

Hi Dannelchen 

I have had a total pelvic exenteration for recurrent cervical cancer so can empathise. I have 2 stomas, so I’ve had my rectum and bladder removed, along with the whole of my reproductive system,p and vagina, but not my anus, so I don’t have experience of the plastic surgery you would have. 

If I can help with any questions following my experience, please ask. I had my surgery in March 2020 and have not regretted it, but it is massive surgery with a long recovery. I had a 30/70 chance of survival but live a pain free life with no recurrence.

Sarah xx

Thanks Sarah

I think we've discussed this before: I am also facing huge plastic surgery issues as they are going to harvest huge chunks of my buttocks and thighs to cover all the removed tissue....that's something that scares me - especially as I have an intolerance to all opioids: and so far I haven't been able to get any help from my hospital. I waited 6 months for an appointment with the Pain Management Team but I was told they were a team helping reduce opioid use! I have asked so many times to see someone about this. I was just told to bring up the problem in the Pre op appointment. 

I will bring this problem up again when I have an examination under anaesthetic in 2 weeks time, but I haven't been listened to about this, just fobbed off.

Yes I am in touch with the specialist nurses, I will try them again.

Any ideas?

Thanks

Dannelchen 

Hi Dannelchen 

Yes, I do remember we have spoken before. I’m so sorry to read you haven’t been getting help with pain management. In my experience of multiple pre op assessments, these have been done by general nurses in clinic, who were just basically assessing my fitness for surgery rather than answering questions about my specific situation so I’m not sure how helpful it will be for you bringing up pain management there.

I asked my own gp at one point about pain relief and was told I would be referred to the pain management team, but never heard anything else and got no help, so I can certainly empathise with your position. Have you considered PALS at your hospital if you are in the UK? Their role is to help patients who are concerned about any aspect of their care and may be able to move things along for you. Definitely try your specialist nurse or nurses again too. 

The surgery you are facing must be very scary with the added issue of the plastic surgery required-have you had discussion with the plastic surgeon who will perform this aspect of the surgery for you? Even after having an exenteration myself, I can’t imagine how much more daunting it must be for you to be facing so much. 

I hope you’ll keep us posted here with how things go and please don’t be concerned that you can’t post about your fears etc. I used to be concerned myself that I might frighten others with my story if they had not had a similar experience, but haven’t found that to be the case. 

Sarah xx

Hi Sarah 

I just wrote a whole long rigmarole only for the site to crash and when I reloaded all my notes were gone.

Fed up, I'm going to do something else

Not an easy ride is it. Lots if love to you and thank you for replying  to me xxxx