[Rah]

Sorry lots of spelling mistakes in there.

Not that we are going to Aussie

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I also think on side note how can they do gender reassignment surgery and not be able to create a successful surgery for the perineum?

[Rah]

Hi Guys

I found this resource recently about how to do more of a fascia release and said this can be helpful in reducing tension in the scar.

https://annacrowle.co.uk/
Some links on that page.

I feel like my PRP is helping and also I am managing the vagifem pessaries which I think are also helping a bit. I still can’t use the cream on the scar.

I also booked a private appointment with Robert Morris who was the plastic surgeon who adviced the gyane Dr Frappell on rhe “Plymouth procedure”. Double z plasty.

So will see what he has to say.

[Rah]

Hi guys,

I found this article, https://www.sciencedirect.com/science/article/abs/pii/S0301211520308228

Often people with LS have bad skin too and it sounds successful.

Obviously want it to be absolute last resort.

Yes Ive seen a naturopath and also taking probiotics.

I am going to do more research into surgeries.

R xx

[Rah]

P. S she suggest 6 weeks of pessaries, first 2 weeks every night and then every other day for the remainder, then topical massage to the scar with estrodiol every night.
Might not be for you, but just letting you know what she reccommended.

[Rah]

Thanks so much for getting back to me, I really would be interested in anything you find out, and that’s amazing to know re the surgeon.

You are the Placebo is basically about the mind body connection. It’s well documented that Placebo affect accounts for 40 percent of improvement in people. Don’t get me wrong I am not saying it is in our head, but apparently there is evidence that if you can get to deep meditative states that you can influence your biochemistry in a positive way, I am a bit off reaching that atm! But I am willing to try it all. Louise hay was talking about it way before Joe Dispenza.

That’s great you are doing therapies too, I also see a hakomi therapist, which is a type of psychotherapy.

I believe there will be an answer. I appreciate all that you share.

R

[Rah]

Hi @sleeplessinedinburgh

I went to the private gyane today, nothing particularly new, but she said it was her experience that low estrogen often is the driver of skin splitting esp. Those who suffer from thrush and hsv.

She felt that low estrogen could drive the flare up of those conditions.
So she prescribed me estrogen pessaries and the cream to put on the scar.
I’ve tried this previously but not recently.

She didn’t know anything about PRP, or alternative treatments really. She did say fentons repair is for a self few only as they can make it worse. But also commented on the fact that it sits between gyane and also plastics.

I personally will consider consulting with a plastic surgery in the future around these things.

She also offered steroids and going back on a combined pill at a later date to stabilise the estrogen. Personally i dont want to do either of those.

Fingers crossed for the local estrogen!

I am even going to start thinking of trying the spiritual root, ever read you are the Placebo by Joe dispenza? You can change your biochemistry, and it seems modern medicine is at its limit in the uk. Esp in the NHS.

R

[Rah]

Hi @sleeplessinedinburgh,

I wish I had more exciting news!
I am actually on my second round of prp presently, one to go in the uk.

I also have a private gyane appointment this Monday which I wanted to discuss more the surgical options.

My story is that I haven’t abstained from sex and pretty much to thr year for 3 years I’ve slept with someone and re-opened the scar, which has set me back as I haven’t been able to do dilators. I also have the added complication of hsv2 and a year of thursh infections!

So not been my year this year.

What I would say is be careful with the steroid, it actually thins the skin and you want some inflammatory process! To help it heal up.

I’ve been on a mad healthy eating and supplement question for healing. I found comvita wound gel (manuka honey) helpful. And I am VERY sensitive to products. Also olive bee can be helpful too.

What I would say, is that it’s likely you will need to do dilators but it might get to a point where you only have to do them twice a week for maintence. I think it really depends on what your drivers are too, I.e is it a hypertonic pelvic floor? Is it the skin? Probably a combination of the both.

My tear has now been opening for 12 years so thr skin is pretty f*ck. 5 years of this I just ignored it and didn’t know about vaginismus.

I also saw about lipofilling, and the lazer was offered to me by the person who is doing my PRP. Basically all of them there is no evidence for thr vulva. But prp has been used a long time in treating tendons, so that’s promising.

I can let you know if I find anything new. Because I also feel my skin is the issue atm. What I’ve know been told about zplastys that your tone, or tension needs to be well managed for it to be successful.

The difficult thing is this kind of surgery sits between gynaecology and plastics.
So it’s hard to know who to best consult! I am going to the gyane first.

Have you ever had botox? I seemed to do well with the dilators that year and the skin before I threw caution to the wind and slept with some random person.

I Totally get it and Ive actually felt suicidal at times, but pick myself up and carry on.

I imagine Swiss health care should be pretty progressive?

I imagine if you look after yourself and haven’t torn it too many times, and do all those alternative treatments and the dilators you’ll get there.
Wish it wasn’t the way but if it means having PIV then amazing.

Sorry if this isn’t the reassurance you are looking for.
Maybe across the uk, nz, and Swiss we might find something.
There is a surgeon in Australia I saw online who reports to deal with this. I will put the link up.

Sending hugs!

[Rah]

Hi Wheat_bag,

I got it done in Hawkes Bay, by Dr Danielle Waxman at Central CosMedic Ltd. Even though I was living in Wellington at the time. I definitely think it helped. But its often a combination of stuff, physio (dilators once its healed) , massage or natural topical moisturisers.

There are a few in Auckland that do it too. I looked at people providing the O shot and then asked if they would inject in into the scar. The good thing about Danielle she was actually a GP before she went into cosmetics.

They are pretty spendy just to let you know! Its about $1000 an injection, and they reccommended 3, 6 weeks apart. You need to find out what might be driving it. Get checked for thrush too.
Managing pelvic floor tension and skin healing is really important, seeing a good dermatologist might be good, although I prefer natural stuff as feel like the medicated stuff never worked for me.
If you’ve never seen a physio I would do that first.

If you are in Wellington Heather Hickey at Habit Health is an excellent physio. As Liz Childs is good.

I might get some it done again here, ive just moved back to the UK.

All the best!!

RAH

[Rah]

Hi Guys just to give you an update.

I’ve had 3 Prp injections 6 weeks apart. I feel it really helped the skin, the only hiccup was I not so wisely had sex, and so I actually tore it a bit. I went on to have the third injection anyways. I feel a bit annoyed at myself that I didn’t protect this phase, but i am human. It wasn’t for that long but it was too soon.

It’s still not completely healed yet but very nearly. I’ve started doing daily perineal massage over the scar for 5 mins with sweet almond oil (as high vit e). This is what was advised by my physio. And then I will start dilators again.

The lady was super lovely and was a cosmetic GP, she actually gave me the 3rd injection half price. So I got 3 injections for $2500 nzd. The first one she injected it into the scar and near the scar on the perineum and also into the glands that help with lubrication (which is the anterior wall). The second 2 I opted for all 7mls to be injected straight into the scar. No bleeding afterwards slightly sensitive but fine. I have to drive 4 hours to get it so able to sit etc.

She suggested then you can have top up ones 6mths to yearly.
I think i am considering having another one. But financial constraints are likely to limit me potentially.

Any of you guys opted for it?

I am doing daily kegels and pelvic release yoga poses.

Happy to hear anything updates from you guys.

I think its helped the skin maybe 30 percent. Maybe more I don’t know yet as just started the stretching. And also i had a fairly fresh tear. However she was of the opinion a fresh tear was fine as it speeds up the healing process.

[Rah]

Hi Sleeplessinendburgh,

Lots of GP suck at women’s health and even the gyanecologists lack good knowledge!
I totally get it, it’s really hard to keep up the energy with it all. I think that’s a great idea about just enjoying yourself, that is also part of healing too, forgetting can be important.
I am also not in a relationship, so it’s also challenging. I would say from all my research and personal experience that using the dilators or the dildo in a fun way too! Not just clinical medical and that can really help.
I totally get it about being anxious about telling someone new or trying to get the translation from dilators to sex. Remember sex is actually a mind game! So reducing anxiety in any shape or form is important.

You got this girl! Go enjoy yourself on your travels, you deserve it!

[Rah]

Hi SleeplessinEdinburgh,

Your name should have been the give away!
I am rooting for you too! I might also try and arrange a consult with him, i am originally from Bristol area so a bit of a trek.

I wasn’t recommended no, I just did lots of googling. I am actually a physiotherapist so I have heard it being used for tendons, but not scars. To be honest, I had to even do my own research for botox, and originally no one referred me to physio. I referred myself when I realised that they could help me.
So actually all the treatment I’ve had has come from me researching. Bar my very first gynaecologist review I had 10 years ago, they just gave me dilators and a CD. And that was it. And steroid cream which is bad long term.
So yeah been a rough ride.
I refer lots of my clients to pelvic health now! Just wished I had someone looking out for me those years ago.
Hey ho it is what it is.
Dr Bri vibrant pelvic health is a very good online resources. And also there is a girl on instagram who has a similar issue to us, i think she is called queen of eves but she is much like us and not sure what her diagnosis is.

[Rah]

70 percent sounds better than 50! I will let you know how the prp goes. I think i am going to have another one in 6 weeks as that’s the recommended.
Today I looked i feel like my scar and skin looks healthier.but that also could just be i am in a different part of my cycle.
Yeah it’s sad because lots of people might not have this available to even be able to pay. I mean i do sacrifice things to make it happen but I do have a reasonably paid job.
I might consider a consult with the Nottingham surgeon when I am back.
Do you mind me asking where you are based sleeplessinendinburgh?

Appreciate anyone putting their ideas up here!
X

[Rah]

I’ve also had botox, which I found very helpfil for muscle tension! Unfortunately though I had already developed a prolapse a few months before so I felt I didn’t get the best benefit from it but I did get to a biggish dilator!
I wish I had botox before I had all the tears starting and my prolapse last year.
Botox you can have on the NHS otherwise its about £2500.
I basically spend all my money on my health atm. And odnt have any longer savings as it goes all into that! I paid for my botox here privately with was $6000.
But health is priceless right!

[Rah]

Hi guys,

Yes I paid for it privately in new zealand which was $1000 for one injection. I am actually originally from the UK and I am going back for a few months so have been looking it up there. It is cheaper in the uk around £300 to £400 per injection but i have also seen it for about £200 if you book several. They say around 3 injections is best. I doubt anyone would do it on the NHS! But let me know if you find it.
I also was reading there is an element of the effectiveness is how good the person doing it is. Like even centrafuging the blood and then also the accuracy of the injection. Also they then say a yearly injection is helpful to maintain.
At this point I want to try everything to avoid surgery.
My gyanecology here advised I could have a Fentons procedure but i have looked that up and seems a bit 50 50 if it iwll work but I haven’t looked at the evidence recently.
It’s great you have had pain free sex! Even if it was short lived, or you are having to go back to your exercises. It means it is possible!
I’ve also read about hyaluronic acid injections too but that was a random paper in Eastern Europe somewhere. I haven’t seen any practitioners offering it.

[Rah]

Thank you so much for your reply! It’s really helpful so see what has worked.
I’ve actually just had a prp (plasma rich protein) injection into my scar on my posterior fourchette and anterior wall, as a first of a series. Not lots of evidence for it but can be helpful with inflammation and its used alot in tendon rehab in orthopaedics. Sometimes called the O shot in more cosmetic clinics. Fingers crossed its helpful and then i plan to start my dilators stretching routine again!

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