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» New and need some help
Today at 4:30 pm by LindafromNJ

» Acupuncture advice please
Yesterday at 11:27 pm by infinitelywondering

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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What helped (and practically cured) my Vulvodynia

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What helped (and practically cured) my Vulvodynia

Post  katemate on Wed Dec 29, 2010 6:45 pm

Hi there,

I have suffered with vulvodynia for almost a year now, and understand the pain and frustration you all must be going through.

After seeing numerous doctors for months, I ended up going to an expensive gynaecologist in London, and he prescribed me on amitriptyline (which I am still on now, it is not ideal but compared to the pain I am happy to be on them! haven't had any side effects) i am taking 3 x 25mg per day.
But the thing that really helped me was the dialators, start off on the smallest width and work your way up- (20 minutes per day, for two weeks on each size) i know at first it seems daunting, but trust me perseverance is necessary, I have had mainly pain free days since using both the amitriptyline and dialators, and it also has given me more confidence with sex ( in fact- i have had sex since having vulvodynia- and it was great!!)

So i thought I must share these things with a vulvodynia forum and really urge you all to try these things!! If you haven't do so immediately, you can get a prescription for amitriptyline and find female dialators online.

Its crazy to think if I hadn't gone to that one expensive gynaecologist (I had already been to one already!) then I would probably still be in pain right now.

oh also, one thing i was finding hard was not being able to wear tights or tight clothing, getting really envious of women who were able to!!) but something I worked out recently was if you get long johns (like tights but thicker) a lot of them have the crotch start lower, so my vagina is not touching the tights, you can't really wear a mini skirt (as the crotch starts lower than them!) but means you can wear skirts and feel a bit more confident in skirts and boots etc.

Anyway, I just joined this forum to share this, but am going to have a look around now and see some of the posts, I hope this has been useful for you all. And HANG IN THERE!

Kate

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Re: What helped (and practically cured) my Vulvodynia

Post  Sebby (Admin) on Wed Dec 29, 2010 9:34 pm


Thank you so much Kate for your advice Very Happy

Its great to know what can help. I am currently trying to come off my citalopram (for anxiety) so I can try ami etc if needed. Im too drugged up to try the both lol

Also can you recommend any dialators online? I have really thought about trying this but am unsure of what ones to get?

Thanks and Welcome to the forum

Sebby (Admin)
xx
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Re: What helped (and practically cured) my Vulvodynia

Post  katemate on Thu Dec 30, 2010 10:55 am

Hi Sebby

These are the kind that I use http://www.mdti.co.uk/vmchk/Female-Health-Products/Femmax-Dilator-Set/flypage.cafe.tpl.html

You see there are 4 sizes, so what you do is start off on the smallest size, place that in the vagina and rotate (in small circular motions) for 20 minutes each day, do this for two weeks and then move up to the next size, do that for 2 weeks etc. Basically its important that you try and put something in your vagina each day, my gynaecologist has recommended that after I finish the dialators, that I get a vibrator. Oh and also get some lubricant when you use the dialators - i use KY jelly which is hypoallergic and that seems to be fine. Seriously, get these!! I can't recommend them any higher, they have been the turning point for me, it is hard work- 20 minutes each day can seem like a lot! but its worth it!

Oh and something I also forgot was that its really important that you wash your vagina everyday, i use 'Vagisil' and once again its hypoallergic and i notice a difference if I don't wash ( I usually do the dialators in the morning, then afterwards wash with Vagisil-and if you do it in the morning its out the way for the rest of the day!)

I do also highly recommend the amitriptyline- go and see a doctor first to check! start off on 10mg three times a day, then after a few weeks move up to 25mg three times a day, well thats what I did, and in fact 25mg three times a day is actually quite a low dose for amitriptyline in terms of antidepressents,so i haven't felt too drugged up!

Anyway, let me know if you have any more questions! Vulvodynia is such a nightmare, my gynaecologist still doesn't know what caused it, I think it is something that after a few years will just go away, but it really is a stressful and lonely condition to have, its great to have a forum here where we can talk about it.

Take care- and really do try these things I recommend, my life has turned around! It may take a while to see the results but give it a go- what have you got to lose!

Kate x

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Re: What helped (and practically cured) my Vulvodynia

Post  Sebby (Admin) on Thu Dec 30, 2010 2:00 pm


Thanks so much Kate I will order these dialators. I do have a small vibrator that I have tried using a few times..most times I can do it as its small as I said certainly not like the normal size ones which look so scarey!! lol

I must admitt I did try to use the small vibrator I had a few times a week when I could manage and did find it made a difference but then got a bad flare up and got so scared off.

It maybe that I need to just try the smallest dialtor first and so it wont seem so scarey.

I got the vibrator from Ann Summers ages ago and have looked online but can't seem to see it on there site..I do hope they havn't stopped producing it as I was gonna suggest it to the girls on here who wanted to have a practice! but there does seem to be a good few slim vibrators out there if you just google it.

I have used vagisil before when I was first getting symptoms. I am quite frightened about using too many products down there as my skin is so sensitive.

I will ask my dr about coming off the cit and if it could be slowly replaced with some ami etc... I just want to make sure I dont have a bad anxiety flare up. Its handy to know the dose you are on is small enough not to feel too drugged up.

Thanks again for all your advice it gives us hope

Sebby
xxx

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Re: What helped (and practically cured) my Vulvodynia

Post  Mouse on Thu Dec 30, 2010 8:10 pm

Hi Kate,it's REALLY reassuring to hear that you have found some relief, this thing would steal your soul if you let it.

I have generalised unprovoked vulvodynia so have constant unprovoked pain 24/7. I can have sex and by some miracle that temporarily takes away the pain. The miracles are oxytocin and endorphins I think, the natural feel good chemicals. It comes right on back though.

I've been down the Amitriptylene route and also tried Gabapenten, I had massive side effects even in the lowest dose. I'm really pleased it worked for you without too much drama. I have a low tolerance to most things, damn it! I can be rat-faced after one glass of wine so it's a no brainer that any mind altering substance was going to be a problem. My specialist was keen for me to keep doubling the dose and my GP wants me to try Notriptylene. I'm resisting for now. I was a zombie before. Actually one of my colleagues said I was vile - hmmm I just lost the power of speech for a few days... which was probably for the best.

Finding a good Dr is another blessing, I had to travel to another city as well. Mine specialises in vulval pain and she didn't treat me like a circus freak so that was another bonus.

I'll say it again... it's really reassuring that you have found a solution. This forum is filled with lovely ladies who deserve to be living a fabulous life. I can't wait to see each one of us find the answer and get out and take the world by the scruff of the neck. We now have a FB page, putting faces to the names has been amazing. It makes us into real people, with real lives.


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Re: What helped (and practically cured) my Vulvodynia

Post  katemate on Fri Dec 31, 2010 10:44 am

Hi Mouse,

Have you tried the dialators?? they have been the thing that turned it around for me, it is painful and hard at first but really do help! And do you wash with Vagisil?

Sorry to hear you seem to have a really bad case of vulvodynia, and its amazing that you are still going! Its a shame you get so effected by medication, at first on the amitriptyline I did feel a bit whoozy, but after a while my body/brain got used to it. How long were you on the Amitriptyline for? And at what dosage?

It is such a horrible thing to have isn't it! This forum does seems so great at giving women a place to rant but also feel connected to others with vulvodynia.

I really hope your pain eases up soon, sending positive energy your way!

Kate xxx



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Re: What helped (and practically cured) my Vulvodynia

Post  Mouse on Sat Jan 01, 2011 1:05 am

Hi Kate, thanks for the positive energy, right back at you!

I don't have the kind of vulvodynia that needs dialators, I have unprovoked pain which means it's there all the time and not to touch. I can use tampons, have sex and even had a smear last week. Although with the amount of activity my girl bits have seen this year I put that off for far too long and then got really stressed about it. Done now!

I was only on 10mgs of ami. which was more than enough for this crazy fool. I know it has been helpful for other people, I just found the foggy brain and trying to function "normally" wasn't working for me. I have an auto immune condition which gives me the foggy brain as well so kind of a double whammy.

It's frustrating that the answer is probably going to be something very obvious and we just need some clever clogs to find it Smile Of course the joint power of women networking shouldn't be underestimated either. Among the people I've seen who have found a "cure" there are things as simple as diet change and balancing estrogen levels. I'm looking at both of those - although I'm not doing so well with eliminating sugar and alcohol at the moment.

Happy new year!!! xx.

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Re: What helped (and practically cured) my Vulvodynia

Post  katemate on Wed Jan 05, 2011 10:27 am

Hi Mouse,

I also have unprovoked vulvodynia pain. The dialators helped me with this decreasing my pain greatly, you do seem to have a much stronger version of Vulvadynia than me but in regards to using the dialators- whats the harm in trying?

Good luck, and Happy New Year too!

Kate x

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Re: What helped (and practically cured) my Vulvodynia

Post  Mouse on Wed Jan 05, 2011 7:10 pm

Hi Kate,

I'm probably a bit confused about what dialators do Smile I thought they were more if there was tightness and encouraging the muscles to relax to allow insertion. I don't have any trouble with that, I can have sex I just have pain 24/7. I do have bunched up muscles on the side that gives me most of the trouble and I'm waiting for an appointment with a womens physio. I'll talk to her about dialators.

Thanks for the info. I hope you are having painfree days.
Take care
Vicki


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Re: What helped (and practically cured) my Vulvodynia

Post  Sebby (Admin) on Wed Jan 05, 2011 9:29 pm


I have ordered my dialators!

I have pain when touched when not touched etc etc..I do find it worse it there is pressure like sitting or anything touching the area like clothes. When I get home I put on a long skirt with no knickers oooh err lol and that provides a great relief for me.

Hopefully the dialators can do some good will keep ya posted

Sebby
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Re: What helped (and practically cured) my Vulvodynia

Post  Hoping23 on Wed Mar 09, 2011 11:27 pm

This is probably a bit of a late reply and I haven't posted anything on this forum for a few months however i am currently taking 50mg of Amitryptiline a day and am really interested in trying these dialator things whatever they are, i'm going to follow that link in a minute. My pain is only on penetration and is fortunately localised to one area, however after coming off the Ami for a month (long story) i struggle to have sex, am now back on the Ami and i know my pain will be much better once its had time to kick in again. My doctor for down there says they are done with me as last time i went the ami was working well and i was almost pain free so they couldn't do anything more, however i have been referred to a psychological clinic who now believe they can remove my pain lol (i know its not funny, i just know it isn't that easy) with the use of relaxation techniques and lidocaine cream (just don't numb the clitorus as I found out the other week to my sexual frustration!!! oops).
I have no trouble inserting tampons so i think if i can get my body used to having things up there maybe the pain will lessen as it does tend to be painful just during sex and i don't tend to put anything else up there!! I have been contemplating getting a dildo just to see whether my body would accept that so i know whether this is all just in my head.
I had a couple of hypnotherapy sessions a month or two ago which seemed to help a little bit - i usually get a painful aching in my clitorus when i start to feel aroused however after my last hypno session i actually felt excited aroused instead of painful aroused so im tempted to go back for another session as i am useless at doing the self-hypnosis stuff, i always forget. I think i need like a month in a clinic to retrain my body and to sort out tensing of muscles etc etc. Sort of gone off topic but anyway, im going to look at the dialators!! Thankyou!

Hannah x

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Re: What helped (and practically cured) my Vulvodynia

Post  Sebby (Admin) on Thu Mar 10, 2011 7:39 pm


http://www.vulvodyniasupportforum.com/t278-sex-toys-etc

Hi Hoping here is the link to my post on sex toys recommended to me by Dr Glazer. If you are in the US you can order from Eves Garden if not then you can order the Dildo 'Scorpio Rising' from Dr Glazer's site.

The Scorpio Rising is made from silicone and this is suppossed to be less irritating than plastics. I havent yet ordered mine but will do soon!

Oh it also comes in different sizes so first order the smallest one

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Re: What helped (and practically cured) my Vulvodynia

Post  Sassymel on Sat May 07, 2011 11:14 am

So glad I came across this...the dialator is exactly what I've started doing suggested by my physio (alongside the Nortryptoline drugs I'm on). I'm on the second size and was feeling daunted to go to the third size...but you've given me hope that I'm on the right track Smile So I'll bite the bullet and give it a try. I had a feeling this would help, but now I'm even more determined to keep it up. I haven't been able to do 20 minutes but increasing the time slowely so I'll get there. Most of my pain is just inside the entrance so it's the in and out motion I need to work on patiently...More than anything I want to have good sex with my partner again, and I'm so determined that I'll get there soon.

It's interesting that I find I'm sorer when on my period. I don't let myself have it so often for that reason (controlled by the pill). I managed to use a tampon once this morning but after that there was no way it was going to happen. Way too painful! Thankfully I have no issues with pain using pads/wearing underware/tight jeans etc. But tampons, it just wasn't going to happen. I think it's because they're so dry, everything else (like the dialator and vibrator) that my physio encourages is lubed. If only I could lube a tampon...

On the topic of lube, I've been using olive oil. It seems to be really good as most chemical lubes make me sting...(of course you couldn't use olive oil if you were to use a condom though - not that it's a problem for me coz those are WAY too painful anyway.)

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Re: What helped (and practically cured) my Vulvodynia

Post  Mouse on Sat May 07, 2011 9:36 pm

Mel, do you use applicator tampons? The little compax ones with the plastic applicators are pretty good and you can lube those. I can generally use tampons but do find dryness an issue.

Most of us have more pain around period time. I have more awkwardness with ovulation though. Bloody hormones!

Oh I use almond oil for lube, it's nice and natural and also has vit E. Coconut oil is good also, although that's kind of solid!

Read Sebbys thread about her Dr Glazer consult, he recommends self loving! It promotes bloodflow to the area, instead of the body being in protection mode around the wounded bits. That also eliminates penetration. You will also figure out what works for you and be able to communicate that to your partner. We're all fairly open on here, it's a strange world we live in! Very Happy

V.

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Re: What helped (and practically cured) my Vulvodynia

Post  lolainslacks on Sat May 07, 2011 9:58 pm

This whole thread is really interesting for me, because I've been using dilators for some time now, but not properly, because when I found out my problem was vulvodynia rather than a muscle issue, I assumed the dilators would be no use, and I gave up trying with them. I figured, why cause myself more unecessary pain?

Now that I know there are other sufferers who have had success, I feel inspired to persist. I have made it to the third, and on one occaison the fourth, but both were excruciating. Mostly it's only the first two I can manage withno pain. I get impatient, and I think "it's pathetic that I can only manage this tiny thing", so I push myself to increase the size before I'm ready, which I suppose is damaging. It will be interesting to see how far I progress now that I have lidocaine to help numb the pain a little.

As someone else already said, my pain is right inside the entrance, and it's the pushing/pulling that I find painful. It's like no matter how lubed up I am, it feels like it's dragging on and tearing the skin. I'll have to push past that slowly. One point of interest is that I find if I keep the dilator moving it's not so bad for me (rotating it, etc). When I leave it in there completely still, and then pull it out, it's twice as painful.

I also can never use tampons because of dryness. They are too scratchy for me and are impossible to insert, even though they are smaller than my finger, which I can insert with no problem. It's the material, my body can't take it. Which is why I am thankful to have read that it IS possible to lube a tampon. Thank you, forum!

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Re: What helped (and practically cured) my Vulvodynia

Post  Sassymel on Sun May 08, 2011 2:39 am

I haven't used applicator tampons ever before to be honest. I found tampon insertion difficult from the moment I tried (which is interesting as I've read that there is possibly a link between painful tampon use during puberty and likelyhood of getting V...) so I felt I had better control using non applicator ones. But it might be worth a go because as you say Mouse I could lube the applicator! I waste so much money on tampons that get tried but dont get used so I think it's worth a go! Do the compax one have teeth? I'm a bit scared of those...

Keen to try almond oil too! I've also read that Neem oil works well. I don't even know what that is but if anyone has tried I'd be keen to hear more. Any ideas where one would find it?

Thanks I'll go looking for the Dr Glazer consult thread, sounds interesting! Yeah for as awkward as it can be to talk about this, it's a real breath of fresh air to be open and just ask questions - and for as much as I think my specialist is awesome, she doesn't have it so advice from others with a similar condition is so appreciated!

Lolainslacks, I reckon it might be worth you persevering. Don't rush yourself (I need to remind myself of my own advice!) and try as much as you can to just relax and be calm when you do it. I prop myself up with pillows on the bed, close my eyes and listen to Enya to help keep me relaxed. If it hurts a lot, go back to the smaller size. Yeah I find rotating is ok, and the worst pain is pulling it out almost all the way and then putting it back in! But, I'll get there. I can handle it with the small one so I'm hoping its only time and letting my muscles understand that the thing coming inside is ok and isn't out to get me!

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Re: What helped (and practically cured) my Vulvodynia

Post  Mouse on Mon May 09, 2011 12:58 am

Owww I know what you mean about the teeth!!! The cardboard applicators have those and boy have they made my eyes water. Generally I make sure the teeth aren't open too wide, strangely the plastic ones are way gentler. I think you have more control with an applicator and you can get it in all the way. Also the tampons themselves aren't hard. Get some and have a look, they aren't those bullet ones. I had an unfortunate experience with one of those little hard things right when my V kicked off. I spent a really uncomfortable night out with one pressing onto a nerve (GO FIGURE!!!), didn't have a spare and I was at a nightclub with yucky toilets so didn't want to pee there anyway. Lube it up and see how you go. Use natural lube of course.

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Re: What helped (and practically cured) my Vulvodynia

Post  Katiej on Mon Nov 20, 2017 4:43 pm

I realize this is a very old post. Can I ask if you are still recovered and if u ever came off amitriptyline? I dinte have issues with penetration but im itchy and stingy all over up to my anus. Tender clitoris and stabbing nerve pain. All after a bad infection and lots of antibiotics. Started ami two weeks ago. I feel its starting to work as im having symptom free hours. Is it usually a slow process for med to work. I know this is 5 years ago. But can u give a girl hope im really frightened and struggling. X

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