Stage 2 vaginal cancer vain 3

HI Lisa,

I'm so sorry to hear your sisters news. She is lucky to have such a caring sister who is looking out for her. I have found the forums really supportive.

I don't have the same cancer as your sister but have a stoma bag (ileostomy) from the small bowel due to crohns disease when I was 10. There are different types of stomas depending on what part of the body it is. 

I underwent 5 weeks of chemo/radiotherapy earlier this year for tumours against my vaginal wall. Unfortunately it didn't work so I had the vagina removed about 12 weeks ago. Do you know exactly what type of surgery they want to perform??

When I was recovering in hospital there were younger women than me having stoma bags for cancer and we still keep in touch and they are getting on with their lives and doing really well. 

I hope this helps.

Please get in contact if you want to know anything else.

Thank u so much for replying to me. We will know more this Friday when my sister has spoke to the surgeons. She is so scared of having her vagina taken away! What it would look like cosmetically! Would she still be able to wee normally! What care and rehabilitation she will need! I'm sorry to be so direct with these questions but my sister and family are so scared! It's sounds like you are going through a lot at the moment yourself! You have given me some comfort that there is always hope. Proud to know that you've gone through this major ordeal and are helping others with their journey.

Hi Liza, 

I must admit it was the thing I most dreaded and I've been through quite a few horrible ops in my life. Especially as in 2019 they mentioned the possibility of removing the vagina and I was so relieved when they didn't so now having to have it removed has been a huge thing. BUT I need to be here for my husband and my sons so there was no option but to go through with it. 

It doesn't look the same externally as part of both my labias have been removed too. The plastic surgeon used the muscle from my inner left thigh to reconstruct the vagina internally and externally. So therefore the tissue doesn't look the same. There will also be no sensation in that area. Apparently I will be able to have sex again but it will not be as before. But that is a long way off even contemplating it at the moment. 

I'm having problems with my bladder but my surgeon said its very bruised as they operated very close to it. I'm waiting for a referral to a urologist. 

The recover has been ok, im 12 weeks post op and was back driving short distances about 4 weeks ago. I've been back walking the dog for about 8 weeks and back to  pilates this week. I'm feeling more tired at the moment but think its cause I'm back to doing the normal day to day.

I really hope this helps. I so hope the consultation goes better than your sister thinks. They have to tell you the worst case scenario. 

As I said before you can ask anything, im just really pleased to help as its so hard to find others who have gone through this type of op and how they are getting on. 

X

Hi Blackswan

Inspirational! What an amazing lady you are. You have been so brave and been through so much! 

Thank u so much for sharing your story with me. I want my sister to have the Operation rather than chemo again! The chemo will only manage it for so long has it is an high cancer! I can't imagine for both of u what goes through your minds! My sister will know alot more Friday and we will know then the full picture! I really appreciate you sharing your treatment with me. If it's OK with u I would like to email again once my sister has seen the surgeons! 

Once again thank u so much. You are one brave lady. 

Xx 

Hi Lisa,

I had Stage 3 vulva cancer and completed 6 weeks of weekly chemo and daily radiation.  Two and 1/2 months later, I had radical surgery to remove my tumors and cancerous sections and reconstruction surgery.  They had to remove my left labia as well as internal areas and took close to 8 hours.  I was bedridden after the fact for approximately 8 weeks.  I do not have a stomer bag.  My vaginal area is not pretty to look at, my urine flow is not the best and I wear small pads for leaks.  But, overall, the chemo, radiation and surgery was well worth it!  Took me about 6 months to get back to being able to walk a mile or more per day (exercise), go up and down steps, etc.  If you or your sister  have any questions, please don't hesitate to reach out to me.  If she just wants someone to communicate with whom has 'been there - done that', tell her I'd welcome hearing from her.

Hi Shadow girl,

So pleased to be chatting with somebody whi has had similar surgery and I hope you don't mind me asking you some questions? How long ago did you have your surgery? Have you been able to get intimate again?? This is something I'm really worried about. How it feels, is it difficult etc?? Its such an intimate area and its hard to find others who will talk about it. 

I really hope you getting on OK and look forward to hearing from you.

X

Hi Blackswan,

I had my surgery last year in February.  I think this will differ for everyone.  In my case, I believe that the close relationship between my husband and I makes a huge difference.  He has been by my side all the way through this journey.  After surgery, he had to care for me  very intimately, i.e., he did everything for me.

Once the various doctors gave me the go ahead, we took our time before we got completely engaged in sex.  We did a lot of 'making out' sessions until we both felt ready.  I had and still do, use various lubricants we purchased together - at an adult store.  Picked up a few 'toys'.  I do not have the same sensations as before by any means.  But we both have a great time.  Work up to it, touch & feel, candlelight bubble baths together, silky lingerie, etc.  

Liza,

I wanted to apologize for incorrectly spelling your name.  Hopefully, the meeting your sister had answered her questions.  Having you & family cheering her on is awesome.  Will keep your sister in my thoughts & praters.

+prayers.

Hi Shadowgirl ,

Thankyou for being so open and for the fantastic advice. I'm 12 weeks on from surgery, still having bladder issues and a discharge, which gets me down. I am no way ready to start any intimacy with my husband yet who has been amazing, I think once this discharge stops (which is apparently normal) I will feel happier in myself. 

Thankyou you have given me hope.

X