[sleeplessinedinburgh]

Hi @Rah

Oh no, I’m so sorry to hear that you’re still in the struggle 🙁

I’ve been dealing with it for about 12 years too, or at least I think that’s when it all started. Like you, I had the pain but didn’t know what it was and just put up with it. Then I heard of Vaginismus and thought maybe that’s what I have. It wasn’t until a few years ago that I actually realised there was an actual physical injury down there. So I too have been unwisely tearing the skin over and over again. I wish I had been correctly assessed and diagnosed the first time around, so I could treat this thing before it got so much worse.

I can’t comment on the progressiveness of the Swiss healthcare system yet. So far I have been spending an insane amount of money on mandatory health insurance each month and I’ve still had to pay for lots of things (including a smear test) out of my own pocket. I actually have an appointment with my insurance provider today to try and under stand how the whole thing works and what exactly I can hope to get reimbursed. I’m quite certain however that if I had PRP, laser or similar it would not be covered.

I’ve been looking into nutrition as well and other possible underlying conditions. I researched some of my other symptoms and tried to find which nutrient deficiency is linked to all of them. Based on that I’ve started taking iron, zinc and vitamin B. I figured it wouldn’t hurt anyway.
I’m also thinking of doing some other tests, including an HSV test, a hormone test and maybe a gut health test (lots of gut health issues in my family including coeliac disease).

I’ve found someone here in Switzerland who combines laser with PRP: https://www.dr-niggemann.ch/aktuelles/laser-prp-das-dreamteam-fuer-ihre-vaginale-gesundheit/ (article is in German)

Other research papers I’ve found about treatment for vulvar granuloma fissuratum (recurrent fissuring) are based on studies made on people with Lichen Sclerosus (which I don’t believe I have, since I don’t have any of the usual symptoms, but now I wonder if I should get tested for that anyway):

https://www.lichensclerosus.ch/custom/data/ckeditorfiles/Literatur/EuropeanJournalperineoplasty16Dec2020.pdf (This one was actually written by 2 doctors in my current gynae clinic)

https://www.sciencedirect.com/science/article/pii/S2050116116300149

The consensus seems to be that surgery is still the best option, due to lack of sufficient studies on alternative treatments, but I’m still hesitant.

In my case it really seems to be a matter of scar tissue and lack of skin elasticity. Although the PT has found some pelvic floor hypertonicity, this seems to be only mild and more linked to the spontaneous spasm of muscles upon contact, due to fear of tearing. But I’ll see if tests reveal any other underlying condition that I might not have thought of yet.

I’ve also been looking at this vibrator thing that someone wrote about on Reddit: https://thepelvicpeople.com/products/kiwi

There seems to be so much information out there, and yet so little actual, effective help. This thing is incredibly emotionally draining and isolating 🙁
I hope your appointment with the private gynaecologist goes well. If you’d like someone to talk to who understands the struggle, please feel free to drop me a message.

Sending hugs back!

[sleeplessinedinburgh]

Hi Rah,

Actually the doctor who wrote that paper works at my gyneacologist clinic and I have an appointment with him next month.
You can read the full article here: https://www.lichensclerosus.ch/custom/data/ckeditorfiles/Literatur/EuropeanJournalperineoplasty16Dec2020.pdf
It sounds promising but like you, I’m wary of undergoing anything that might cause more scarring down there. I’ll let you know how my appointment goes.

The PF physio I used to see in Edinburgh used to do myofascial release on me, internally and externally, and I always found it helpful. I wouldn’t say it’s enough on its own though, as I still had to do daily stretches and dilator exercises. It certainly didn’t hurt though. I’ll have a look at the website you shared. If you like I can give you the name of my PF physio in Edinburgh, though maybe it’s a bit too far out for you.

Best of luck with your appointment with Dr Morris!

[sleeplessinedinburgh]

Thank you, I hope the cream works for you too, if you decide to end up trying it.

I don’t know if this is helpful at all but I’m also considering getting a general gut health check, as I’ve heard irritation and other problems down there are often linked to gut problems.
But maybe I’m just clutching at straws at this point…

[sleeplessinedinburgh]

Hi @Mel1996
Sorry to hear you’re still struggling too.
I’m currently on a corticosteroid cream called Dermovate prescribed by my gynaecologist but like you, I’ve been hesitant, especially because the doctor told me to use it for a month when on the box it says not to use it for more than 2-3 weeks consecutively. I’ve decided to give it a try just until my next appointment in mid December just in case there is some benefit too it after all.
So far I’ve not seen any effects, either positive or negative, but I will keep you posted.

Have you also looked into Lichen Sclerosus? My doctor says it’s often misdiagnosed as thrush at first.

@Rah thanks for the info too. Did the gynaecologist do any sort of test to determine if there was a lack of estrogen down there or just prescribed the treatment on the off chance? As far as I know there is no such thing as test that can be done, right? I wonder if a generic hormone blood test would pick up on a localised lack of estrogen

[sleeplessinedinburgh]

Hi @Rah
I’m sorry the meeting with the gyne wasn’t particularly enlightening. It really seems we’re at the stage where we know more than doctors themselves.

I hope you see some improvement with the estrogen. I’ve tried that too at some point (only cream, not pessaries) but didn’t notice any difference. I also did a general hormone screening (blood test) at the time and my estrogen levels were in the norm. But maybe I just didn’t apply the cream for long enough? I was a bit worried about absorbing artificial hormones tbh.

I’ve never heard of that book. What’s it about?
I have thought of trying acupuncture and other alternative medicines. I’ve also considered body-focussed psychotherapy, wondering whether my tense pelvic floor could be linked to unprocessed emotional trauma.

Honestly, there are so many avenues one could explore, but sometimes you just need an answer, right?

I’ve found out that the head surgeon at the gynaecology clinic where I go to here in Switzerland is basically one of the top experts about perineoplasty in the country so I would hope if I decided to go on with the surgery I would at least be in good hands. But I’m still not convinced.
I will talk it over with my gyne again at my next appointment in a month and ask her what she think about the other treatments as well (laser, PRP etc). Maybe I’ll book a consultation with a plastic surgeon here as well.

I will keep you posted. Fingers crossed the cream helps you in the meantime!

[sleeplessinedinburgh]

Hi @Rah

I was wondering how you’re getting on after the PRP injections. Would you be up for giving us an update?

A little update from me: after I went travelling for a few months I relocated to Switzerland, where I still am currently. For over a year during this time I didn’t do any dilator work or pelvic floor physio of any kind, nor did I have sex. In February this year I started dating someone new, and the first time we tried to have sex the tear reopened again. It’s like during the break I took, the skin lost all the elasticity it had gained through the dilators work. It’s been quite disheartening as it made me realise that this is an issue that will always represent itself, unless I constantly keep up with the treatment.
I’ve been back to the gynaecologist now, who has restarted me on the usual routine of corticosteroid cream, pelvic floor physio and perineal massage. But I hate the thought of having to do this for the rest of my life so I’m on the lookout for a more long term solution.
The gynaecologist has suggested a perineoplasty as a last resort but the results are not guaranteed and I’m hesitant to go for something that will potentially create even more scar tissue down there.
I’m now looking into other potential treatments like laser, PRP and lipofilling (or a combination of these). I’ll mention them to my gynaecologist next time I see her and see what she recommends.

[sleeplessinedinburgh]

Hi @nina_r

So sorry to hear you’re going through this. It can be so despairing when you keep trying possible solutions and seeing no improvement. Been there done that, unfortunately. And I imagine it’s especially frustrating when you’re trying to get pregnant and stop the tearing at the same time.

All the remedies I tried I listed in a previous post on this thread. What worked the most for me was working with the dilators everyday, doing pelvic floor stretches everyday and keeping the skin moisturised. However, it’s very important that you let the skin heal between one ‘penetration’ attempt and the other, whether it’s sex or dilators. Whenever I accidentally experienced tearing again, either because I didn’t use enough lube during sex or tried to push too hard with the dilators, I felt frustrated but I always gave my skin a few days to heal before I touched it again (it usually doesn’t take more than 2-3 days).

You said your doctor also thinks your area there is very irritated, so I wonder if, in your current (very understandable) state of frustration, you’ve been pushing too hard and making the issue worse by irritating the area again and again and not allowing it to heal between tearing episodes.

What if you were to put the pregnancy attempts on hold for a little while, and focus on fixing the tearing problem first? Would that be at all an option for you?
I realise it’s not an ideal solution but it seems to me like you need to focus on healing your body first. Once the pregnancy arrives, your body will inevitably undergo further stress so you want it to be in the best shape possible.

This however are just my 2 cents as someone who has never been pregnant or attempted to be pregnant herself. Maybe there is someone else on her who has dealt with posteriour fourchette fissuring and pregnancy at the same time?

[sleeplessinedinburgh]

@recessivegenequeen I totally agree with you, it’s a sad state of affairs, and it pains me to see that this is the one experience we all seem to have in common, no matter where we are in the world.

@Rah, thank you for your words of encouragement. I’m sure it will do me good to get my mind off everything for a while, but please do keep me (and us) updated on how you are getting on with your treatments. You deserve to heal from this too, and you can!

[sleeplessinedinburgh]

Thank you for sharing those resources, Rah!

I’m the same, almost all the knowledge I have about the issue and the treatments I’ve tried have come from my own research. GPs only suggested steroid cream, like in your case, and the NHS gyno I went to see a few months ago (after being on the waiting list for over a year) literally just said to me “Well, I guess you’ve tried everything so I don’t know what to tell you” (!). I eventually got him to give me a prescription for oestrogen cream, but only after I’d suggested that lack of oestrogen might have something to do with it (again, as I’d found out through my own research). That was the only treatment I hadn’t been able to try on my own, due to needing a prescription for the cream.

Frustratingly, I haven’t been in a stable relationship (and having regular intercourse) for a few years now, so the only way to know if any of these treatments are really helping is to keep using the dilators every other day and I’m running out of energy to keep up with it. This might sound weird (and hope it’s not oversharing!) but I’m starting to mentally associate penetration with the dilator exercises, rather than sex, and I’m afraid when I’ll get the chance to be with someone intimately again, I will be put off by it.

In a couple of weeks I’ll be going travelling for a few months to North America and I’ve decided I’m just going to forget all about this issue until I come back. It’s quite possible I might get tearing again the next time I try to have intercourse or a smear test, but I’ll cross that bridge when I get there. For now I just need a break from worrying about it, as it can be really draining, especially going through this whole journey alone, as I’m sure you know too.

[sleeplessinedinburgh]

Hi Rah,
I’m based in Edinburgh, Scotland. So it was also a considerable expense going to see that specialist in Nottingham (travel, on top of already high consultation fees). I still think it was worth it though, even if only to have someone who actually understands something about this issue confirm that this is in fact what I’m suffering from. Most other doctors I’d seen didn’t even grasp what I was trying to describe to them.
Like you, I was privileged to be able to afford the expense at the time, but there are many other women who wouldn’t, which is sad.
I do hope the prp injections work out for you, and you start seeing progress soon. And yes, please do keep us updated on how you’re getting on. I’ll be rooting for you!
Do you mind me asking how you came across the injections as a potential treatment? Were they recommended to you by someone?

[sleeplessinedinburgh]

Hi Rah,
Thanks for sharing. It’s always good to hear what other people are trying (although it sucks to have to do this in the first place!)
I agree, I highly doubt the NHS would pay for this. It took me over a year just to get an appointment with a gynaecologist through the NHS, and it was an utter waste of time as he had clearly no understanding of what I had, nor any interest in helping me. He also suggested Fenton’s but, like you, I was aware of the low success rate of this procedure (through my own research, not even the gyno’s advice!) so I pushed back against that and decided to keep trying things on my own.
The procedure that the private Gyno I saw in Nottingham suggested is slightly different to Fenton’s, and as he explained it is often used in cases where Fenton’s wasn’t successful. This procedures has a success rate of about 70%, which also isn’t great, if you ask me. Especially if you choose to pay for it privately, which would cost you about £3000, on top of any additional consultation fees.
Agreed, health isn’t cheap, but it’s also not fair that one should spend all their savings on it. Considering how debilitating this condition is, treatment should be accessible to all, not a privilege of the few 🙁

[sleeplessinedinburgh]

Hi Rah, thank you for sharing.
I have heard of something similar before, while I was doing my research. Is this something you’ve had to pay for privately or were you able to get it prescribed by your doctor? I can see from a previous post that you’re based in New Zealand, so I imagine things might be different over there than they are here where I am, in the UK.
In any case, I hope you get some benefit from it and you’re able to resume a comfortable life soon. I know how emotionally deteriorating it can be, trying to find a solution for this problem, especially when there doesn’t seem to be a lot of help out there (and whatever help there is seems so incredibly out of reach!)

[sleeplessinedinburgh]

Hi, I’ve been reading some of your posts over the past year or so as I have been trying to find solutions to the same issue, which I’ve been experiencing for many years. After doing some research online, I came across this information paper by Dr Nunns, based in Nottingham (UK).
⚠️ Warning: it contains graphic images of vulval surgery. I hope it’s okay to share this here.
https://bssvd.org/wp-content/uploads/2019/05/Double-opposing-Zplasty-with-VY-advancement-a-treatment-for-posterior-fourchette-fissuring-vs-1.pdf

The paper described exactly the symptoms I’ve been experiencing so I decided to track down this doctor and book a consultation with him. He diagnosed me with recurrent posterior fourchette fissuring and recommended me for surgery to remove the scar tissue which is recurrently getting torn when I have sex or have an internal examination. However, the waiting list to do it under the National Healthcare Systems was more than a year long, so I decided to think about it and try some of the things he lists as the ‘Conservative treatments’ in the meantime. I tested for local infections and STDs. All came back negative. I also did a private at-home hormone test and a thyroid test. All normal there too.

I then started seeing a Pelvic Floor physiotherapist who diagnosed me with an hypertonic pelvic floor and gave me exercises to do to address that, as well as giving me regular myophascial release treatment to get the PF muscles to relax and stretch.
Alongside that I purchased a basic set of dilators and used them for 5 minutes every morning, starting from the smallest one to the largest. When I was comfortable using the largest one without tearing, I actually purchased a dildo online and started using that instead, as it seems like the most logical step up. It’s the closest to the real thing and when I got to the point where I was able to insert it comfortably without tearing (it took a few weeks of regular training!), that’s when I felt confident enough to attempt actual intercourse, and it all went well – I was able to have sex and stay pain and tear free! I was also able to have a smear test without tearing, which was great, as that had also been an issue.

Unfortunately the problem is still not fully fixed as I have experienced tearing in the same spot again a couple of times over the last few weeks, after I stopped using the dildo regularly and doing the exercises that my physio gave me. I got too comfortable, I guess, but it is frustrating to think that I have to continue doing the exercises regularly or the results will reverse. So I’ve had to go back to the dilators and build up slowly again till I was comfortable with the dildo again. It doesn’t help that I’m not in a relationship and I don’t have sex regularly, meaning I don’t really get a chance to see if everything is still okay, unless I try using the dildo. And I hate the thought of having the chance to be intimate with someone and getting anxious because I don’t know if I’m still okay down there or not.

I have now been able to get my GP to prescribe me an estriol cream, which I will try to use every day for a while. This will hopefully clarify whether the initial tearing came from a local lack of estrogen, which is the only other conservative metho/potential cause on the list that I haven’t tested yet.
Hopefully it will be the final piece of the puzzle. But I will also continue to use the dilators/dildo and seeing my physio once or twice a year. If I get tired of that, I will consider doing the surgery. I wish I didn’t have to, to be honest, but it’s good to know the option is there.

This is my journey so far. I wanted to share it here because I’ve found reading some of your posts helpful in my research and maybe my experiences can help someone else. At least in knowing you’re not alone in this!

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