Member Since:
19 May 2009
Posts: 43

Hi there - thought I would ask a few questions in a new topic heading - it was getting quite long on the other list. 

Did others find the pain was tolerable at first and got worse?  Was this related to just being up and walking more or something else?  Mine increased about 8 days post surgery - no sign of infection and am on two different antibiotics....

I know we are all different and the surgery we had will be too but did you find bleeding/discharge lasted for weeks and weeks or does it stop.  Mine was light initially and then increased quite significantly around 10 days post surgery..... 

What helped with making the pain tolerable.......???? positions/baths/ pain relief/natural things? 

I have other questions about once it is healed and how to move on to "normal activities......but will leave those to later......

Thanks all and hope you are all well and getting good news. 

Sally

Member Since:
21 March 2009
Posts: 30

Hi Sally - sorry to hear you're having such a stuggle after your surgery.

I can't really comment much on the pain part of it - I found it all pretty good and manageable as long as I took my pain killers - which I did religiously.   I did have a deep ache though that came and went and still have remnants of it now 3 months later.  Ive heard that lying on your side with a pillow between your legs helps?

As far as the bleeding/discharge is concerned - I had it for about 2- 3 weeks and did increase at times.  I was concerned that it had gone on so long so I called my nurse who said that as long as its seems to be getting less overall then its ok (and as long as there's no sign of infection.)  it turned out that I had split stiches in 2 areas which then formed granulation tissue - not a big deal, just took longer to heal.  The granulation tissue took a couple of months to fully heal but all looks fine now.

Krista

Member Since:
19 May 2009
Posts: 43

thanks Krista

The pain is back under control - healing is going well...  There is a small patch of rubbing/infection which I am just treating with salt baths...  just about to finish antibiotics.  News was that there was some tumour in the excision.  They do not seem to know which part yet and so have another 9 days to wait to find out what are the best options from here - depending where it was will maybe be further surgery, colostomy or radiation.....  bit of a bother moment!!!!

Having had two surgeries in two months am sort of over that.......

Sally

Member Since:
19 May 2009
Posts: 43

Any others that have had wide margin excision or other Vulva surgery get intermittent bleeding for some time after the surgery???  I am now 4 weeks out ot surgery and  every few days get more bleeding.  Weird.  Had my IUD  replaced at same time as operation so wondering if it is more to do with that.  Got another check up in 10 days - will see what is going on then...

Sally

Member Since:
28 August 2009
Posts: 1

Hi Sally. My name is Jessica and you have no idea how much your posts have helped me cope with my recent wide excisions. Unfortunately I tore my stitches in a few different places and have a massive infection. My dr wants to re-section with surgery and I dont know if I'm strong enough to do it again. I did get good news though..... my margins came back clear so I will not have to do further treatments as of yet. Im afraid if I let my dr go back in and try to seal the site again that I'll be even more lop-sided or that this horrible infection is a sign of how horrible my battle with this cancer will be. I can only imagine you're more frustrated and tired then I am and pray for some of your strength. Best of luck.

Member Since:
19 May 2009
Posts: 43

Hi Jessica.  Sorry I did not see your message earlier.....  Strength comes to me in waves and stays with me most of the time at least in part.  I remember being told not to sit as this might split my stitches - did wonder how I was going to get home from the hospital and my friend offered to strap me to the roof!!! however I did make it home and tried not to do too much - did all the bathing and warm water flushing.  I am thrilled that I had the antibiotics and kept taking them for some time after surgery - as prescribed by my great surgeon......and did not get any infections. 

the news I got about  the margin not being great was a blow.  Have now met with the Rad. Oncologist and to be honest he did not sell that option too well - just as well he is not in marketing!!! all sounds a bit grim in terms of potential side effects and pain and might not be something I want to do right now.    Also have to think of the practicality of living like that for so many weeks and being a sole parent with limited help....

Sometimes it is hard to make decisions that we know we have to make for what is best.  I never see set backs as a sign of the ultimate outcome..... just part of the process to get me where I need to be to beat this.  What does not kill us makes us stronger.......is a bit of my philosophy in life.

Where abouts  are you Jessica?  If we are in the same part of the world I am happy to meet up over coffee or juice. 

Sally

Member Since:
19 May 2009
Posts: 43

Hi all - will post this here and in the other part as not sure who reads which list.  I have had considerable swelling/fluid retention post surgery and it is driving me mental.  My feet have gone up at  size and I only have a couple of pairs of shoes I can wear.   I cannot get my rings back on still = almost 3 months post surgery  now.  My legs feel like they are about to explode when I kneel down - so I tend to avoid this...

Decision not to have radiation was made and am up for my 3 month check up next week.  Got a back injury from going for my "relaxing" back massage!!!!!!!!  Now on about 4 times the amount of pain killers than I needed post surgery so that tends to put it into perspective.  SO had emergency chest xrays the other day as they were worried that I might have clots on the lungs......thankfully that was clear so I am also sure if there was anything worrying they would have seen it so guess that means I had an all clear a bit earlier.  Will know next week if they want to do more tests.

Expecting snow tonight - half way though having my roof replaced!!!!!!!!!!! Told it is water tight over night........what fun

Anyway hope to make the most of the last few days of the holidays.  Hope you are all coping with everything.

Sally

Member Since:
21 March 2009
Posts: 30

Member Since:
19 May 2009
Posts: 43

Krista

yes that is what I thought - I won some treatments up in Hanmer Spa plus accommodation just before my second operation - weird that it would then set me back so much.

I did not have any Lymph nodes removed. I know they "checked" them - but not sure what that means and how much mucking around it did.  I am on a natural diuretic now so hoping that will help.  Also bought some larger shoes!

MMMM Peanut butter smoothy.......mmmmmm interesting.....hope it was not a scrambled egg and peanut butter smoothie = think even I would draw the line at that - even pregnant never wanted anything that weird!!!!!!!  Hope you survived that!

Yes I think once I get all clear  now and then early next year it will help me start to plan things more.

Still perplexed about the pains I am getting....but hopefuly get some answers later in the week.

SAlly

Member Since:
29 January 2010
Posts: 1

Hi am a newbie on this site and can relate to what you are all talking about, as well. Had surgery in Auck beginning of Oct 09, and was in hospital for 10 weeks.Everything that went wrong did and Ive never felt so isolated from family and friends as I did up there. Cancer supoort, was none and I felt so fragile, actually I still do. The nurses, however were the best and full marks to Penny, Ines and all the nurses.

I had a double lymphatic node removal from my groins, after I had endured many many rounds of surgery for the dreaded beasties attacking my body. After each surgery I would suffer the most horrendous pain and walking and sitting were not a pleasant option. The weeks would go by with more antibiotics and more pain relief, and my fustration mounting. My last surgery in August didnt have me believe anything was really wrong, and, on my birthday got the dreaded phonecall we need to see you asap. Travelled from Taupo to Auckland and back in hte same day to be told to be up there in two weeks for the surgery.Told to bring gear for 10 days so took a bit up as I knew the family (sons live in P Nth and have homes etc) and for 10days wouldnt be worth the trip. Day 8 and things went from bad to worse and each day for 6 weeks it was worse.

Im still having the district nurse daily to do the dressings on them, pain is horrendous and my mobility is virtually 0 cos of the way I walk at present, am having physio ecery 2 weeks, can anyone perhaps relate to what Im saying, please as I dont have anyone to talk to, my sons turn their ears off but hell  it does need to be spoken about. Have discovered two more new lesions and they are showing the signs of going like they did before surgery.

If someone can relate to what Im saying please contact me or reply through the chat room.

Thank you all very much for taking the time to read this.Cheers Wendz.

Member Since:
21 March 2009
Posts: 30