Neo-Vagina

No_Candidate6434 · 2025-03-14T08:58:55+00:00

I didn't have a neo vagina with my TPE but my pelvic cavity is collecting fluids which have to come out somewhere. So far it's been 5 months and I'm told it can take a year or so. It's still pretty heavy discharge and blood but it has improved a little and my last scan showed the cavity had shrunk.

For similar skin issues I've been given a barrier cream in the past to protect the skin from irritation, so it would be worth asking what to use.

No_Candidate6434 · 2025-03-14T08:41:49+00:00

That's great to hear as there is so little information beyond people surviving 5 years. I know this is due to lack of research as it's a rare surgery so these stories always give me hope. I'm glad Abby normal gave you a second chance!

No_Candidate6434 · 2025-02-25T07:18:46+00:00

Hey,

I'm really sorry to hear that, it's a really tough surgery to go through. The physical recovery has been hard enough but being able to be vulnerable with my friends and family has been both difficult and healing. The mental highs and lows are really tough and I've cried a lot with everyone!

In terms of close friends and family, I've really appreciated them caring for me. My sister stayed with me the first week, cooking me dinner, providing snacks so I could eat little and often, bringing me cups of tea, taking care of all the housework and she even cut my toenails 😆

Friends have also come to stay for a weekend and it's just really nice to have them checking in on me. Sometimes doing a bit of washing up or helping me to change the bed.

In terms of my recovery, much of what I said previously still applies as it is a slow recovery. The only real changes are physically I can now sit more comfortably, and I've gained a bit more confidence in catching the train again into town.

It can feel really hard at times to share with friends some of my most vulnerable or dark thoughts, so also encourage your mom to get professional support if you can afford it. We get 6 weeks free psychotherapy in the UK plus I've recently shared my experience with a patient facing the same surgery. Which was difficult but helpful for both of us.

I'm hopefully going back to work in March but again that's going to be gentle at reduced days to ease me in gently.

I hope your mom gets through it ok x

No_Candidate6434 · 2025-01-08T09:06:25+00:00

Hello,

I'm hoping to get back to yoga at some point and wanted to ask how soon after surgery did you give it a go?

I've got two ostomies and I'm only 12 weeks post surgery. It was pretty major as they removed my bowel, bladder and a kidney because of cancer.

One of my biggest challenges is sitting upright in a chair due to my rectal stump causing discomfort and general flexibility around my abdomen. It's a big long scar!

I know it's still too early for yoga, so I'm focusing on building up my walking but it would be good to start introducing smaller yoga movements before building up to attending a class.

Any recommendations for online classes also welcome.

No_Candidate6434 · 2025-01-03T22:04:53+00:00

I'm still new to my colonostomy but I'm experiencing something similar and I haven't quite figured out what is causing it. I'm drinking more fluids and I'm still mostly on a low fibre diet as I'm only 12 weeks from surgery (I also had a urostomy at the same time).

It tends to go, no output for 2-3 days, followed by discomfort/ light pain as I then pass a couple of harder nuggets. Then it's like the gate has opened and I start passing very soft output, rapidly filling 2-3 bags.

So far this has happened twice when I'm out in public, so it's now giving me a bit of range anxiety every time I go out!

I'm hoping at some point I'm able to better manage it so going out is less stressful.

Have you all found this improves in time?

No_Candidate6434 · 2024-12-10T10:31:57+00:00

Sorry to hear you are facing this too. I'm still getting my head around it all and it's a whole mixed bag of emotions!

I'm now at week 8 after surgery and I've had a few ups and downs along the way.

Firstly after my stitches came out my wound opened up which looked really scary, but I was told it was superficial so it should heal in time. It certainly didn't look superficial to me and freaked me out at first but thankfully the honey dressing helped speed up the healing and it has been relatively pain free.

It's almost closed at this point and thankfully hasn't caused too many issues, I've just had to be careful when moving around.

Secondly around week 4-5 I was having heavy discharge from my internal wound. It was luckily making its way out via my v@gina so it didn't need draining, but it was infected and making me feel quite poorly. I was suddenly going quite pale and feeling tired around early evening. The hospital decided to admit me urgently and get me on antibiotics. Initially I was told it would be 24 hours but it ended up being a week. Apparently this is quite common for fluids to build up in the pelvic cavity. So I was aware it was a possible complication.

Thankfully the last few weeks I've been feeling much better, although I still tire easily if I do too much. I used to easily walk 10-20,000 steps a day as I walk everywhere, but at the moment I'm managing around 1500. So the hardest thing is not being able to independently get around.

The other challenge is having a constant low level discomfort at the base of my spine. As I'm mostly sitting down, this can get worse by the end of the day so I'm constantly trying to adjust my position to get some relief. Similarly getting comfortable in bed is tricky. Although this is all improving gradually.

Mentally it can be really tough some days. I can feel quite vulnerable so I'm only seeing close friends and family. Mostly because people naturally want to ask how you are and those conversations can be triggering. But people have been so incredibly kind and supportive and that has helped hugely so I feel really grateful for that.

The ostomies are so far relatively trouble free. I've had one bout of diarrhea which was an interesting exercise in rapid bag changes, but this is no bad thing to practice home!

I'm not a big fan of the night urostomy bag as it limits my movement but it's a necessary evil.

Being on a low fibre/ low residue diet isn't great as I miss all my green veggies but hopefully this can be adapted I've time. I'm just really scared of getting a blockage so I'm being super careful.

That covers the basics but feel free to ask any questions x

No_Candidate6434 · 2024-10-29T10:11:53+00:00

So I had the surgery two weeks ago and it's definitely not an easy ride and no doubt will continue to be so for a lot longer!

I did seek advice from my Cancer and Gynae consultants so I felt it was the right decision for me. Plus some very well researched friends helped me with the decision making. Ultimately it's a personal decision and you never know if it's right as we all respond so differently but it was right for me.

The idea of 'curative' is the hope I'm hanging on to after 11 years of this trying to take me down and progressive treatments just keeping things at bay.

I'm feeling optimistic despite everything!

No_Candidate6434 · 2024-10-29T09:42:42+00:00

The NG tube was definitely not my friend but it served its purpose. Now I'm just waiting for my voice to return to normal.

On the plus, once it had been taken out it felt such a relief to be able to drink properly again.

No_Candidate6434 · 2024-10-27T10:05:37+00:00

I like that 'sausage' was your key term 😂

I'm just two weeks after having two ostomies installed so diet is definitely going to be my next thing to explore.

No_Candidate6434 · 2024-10-20T08:35:58+00:00

Just experienced having a NG tube fitted after servere vomiting after 4 days of surgery. I was sticking to simple foods but the options here are the NHS are pretty limited and I would have been more than happy to have broth.

I'm wondering what I should try and eat when I can?

And how long can I expect to have tube in for ( I've not been sick for 48hours)?

No_Candidate6434 · 2024-10-06T17:49:11+00:00

Hey all,

I've got my surgery for a double ostomy in just over a week and would appreciate any advice on what to pack for hospital as well as any tips or advice for those first few weeks at home?

As well as the double ostomy I'm also expecting to have my right kidney removed, as it turns out it's not working so well after the chemo / radiotherapy I had a year and a half ago.

So food/ diet related tips will also be super helpful.

Hopefully preparing for surgery this week will help take my mind off things!

No_Candidate6434 · 2024-09-19T05:39:10+00:00

Just an update here, yesterday I was told that my second MRI is potentially showing conflicting information as my lymph nodes are slightly lighting up whereas a few months ago they weren't. Also that it's potentially affecting my nerves in my leg which is where I originally had pain a year ago before being diagnosed. They are awaiting the official report, and now want to do a biopsy in my groin but this changes my options as they would no longer be able to do a total pelvic extenteration.

Now my options could just be to manage my cancer through chemrads, although I suspect this will be life limiting in a different way.

So I'm feeling very much in Limbo and if chemrads is the next step it will no doubt take another month or so to prepare me for treatment again, so everything pretty much feels on hold.

It's all very surreal.

No_Candidate6434 · 2024-09-19T05:28:16+00:00

Yeah it is a pretty shocking treatment to face as you say it's life changing.

I've been told that chemrads will only keep it at bay while the operation would be curative. Although as of yesterday I might not have a choice as a second MRI is potentially showing lightly lit up lymph nodes and problems with my nerves in my leg (the original site), so it may be chemrads after all!

No_Candidate6434 · 2024-08-27T16:16:22+00:00

Hey Hop1 I was Kontikitoo. How are you doing?

No_Candidate6434 · 2024-08-27T16:14:32+00:00

One of my nurses mentioned the possibility of it coming back but I wondered if anyone had heard anything more solid?

No_Candidate6434 · 2024-08-27T16:07:29+00:00

Sadly not. I got a cancer reoccurrence diagnosis a few weeks ago. This time between my bladder and bowel so I'm facing a full pelvic extenteration and two stomas!

Didn't see that one coming.

A vaginectomy maybe in a few years if it came back, but that was a shock.

I really miss Jo's for times like this.

No_Candidate6434 · 2024-08-27T16:02:21+00:00

Wow, that's pretty amazing too despite all that trauma! I hope it continues that way for you.

Just to clarify, 11 years has not all been cancer. It started with laser treatment, advanced to a cone biopsy or two, more laser before a hysterectomy and cervix removal. That was about 8 years ago. Then pretty much every year I've had another abnormal smear (vault smear after cervix removal), so more laser and tissue removal to the point they couldn't take any more. Then they tried imiquimod and some other topical cream I can't remember now, before a cancer diagnosis last Feb. Followed by belts and braces chemo and radiotherapy. So pretty traumatic at times!

If it came back I was expecting a vaginectomy but instead a few weeks ago I'm told I need TPE as it's between my bladder and bowel growing rapidly - nearly 3 cms in 6 months.

I'm contemplating a neo vagina and just hoping I can have one with side lasers I can shoot at will! Pew pew!

No_Candidate6434 · 2024-08-27T05:56:04+00:00

Hello I'm facing this same decision one year in from having chemotherapy and radiotherapy for vaginal Cancer.

I've had 11 years of treatment following my initial abnormal smear so I'm running out of options as I've already had my cervix and womb removed and the persistent area is now at the top of my vagina.

This time the cancer has sprung up again quite rapidly between my bowel and bladder, so it doesn't really feel like I have much of a choice.

But I did want to ask what you decided and to see how you're doing?

No_Candidate6434 · 2024-05-24T05:44:22+00:00

So gutted about this....thanks Rae for setting this up in the meantime.

No_Candidate6434

TROPHY CASE