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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

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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Saginil gel, acupuncture and manual desensitisation

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Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Sat Jan 17, 2015 2:40 pm

I have written about saginil gel acupuncture and manual desensitisation in other posts, but I thought it was worth a post of its own. Saginil was actually recommended to me by my GP. Coconut oil soothed while on there but did nothing to take away the pain, steroid creams worked for a while but then began to burn and make it worse; lignocaine and hyalofemme cream just stung. I just said to my GP one day "with all medical advancements we have made, I cannot believe that no one has made something that I can just put on there to ease the pain!". Her first response wasn't very helpful - that most of the scientists are men and they don't care about vulvodynia. But then she suggested saginil gel. She told me one of her patients had had vulvodynia for years then, when on holiday in Italy, found this topical gel that was designed just for vulvodynia, so she tried it and boom was better in a matter of days. I checked it out online and there were some glowing testaments, but also, as with all these things, it didn't work for everyone. I discovered you could buy it online direct from the manufacturer, Epitech, but expensive and very expensive on the post. You can pay by PayPal so currency isn't a problem. It is not classed as a medicine! Rather as a food for special medical purposes (due to the plant based natural ingredients), which is why it can be bought online without a prescription. There is also an intimate wash to go with it and cannulae and ovules for internal use. My pain area was in the horseshoe shape, posterior to the vaginal opening and only external, so I thought, I'll give it a go. It sat in my drawer for several weeks before I plucked up courage try it, having lost all confidence in topical preparations - you see, although the active ingredients (anti-inflammatory and reduce the hyperactivity of the nerves) are plant based there are some other ingredients that are considered nasties e.g methyl paraben. But one day I decided to give it a go. I put a very small amount on a very small area and waited - no stinging. So that night I put a good blob over the whole area of pain. In the morning I actually did notice an appreciable reduction in the pain level - at last! So i continued to use it twice a day, as per the instructions, and my pain gradually and steadily decreased, not as quickly as a matter of days, but over several weeks, until I considered myself no longer in pain but in slight discomfort. Pain could still be provoked by touch, but day to day living was now bearable. At that point I started acupuncture to really work on damping down those over-reactive nerves (in combination with amitriptylene, which helped but not fully) - the acu and amitriptyline work in tandem to calm down those nerves, as does manual desensitisation (stroke the painful area with coconut oil or an oil based lube, starting with only a couple of very gentle strokes and gradually building up the duration and pressure to retrain the nerves to accept touch as touch and not pain). I can finally have lovely intercourse with my hubby again! So, in summary, I recommend trying saginil gel, if you can afford it. As for the other things like acupuncture and manual desensitisation - the science makes sense, so why not give them a try - they make not work for you, but they can't harm you or make you worse (providing the acupuncturist is properly qualified - I have western acu, administered by a GP who trained in acupuncture). My acupuncturist warned me that I may feel a bit worse after the first few sessions then things should start to improve, but I just felt a benefit from the start - I feel so relaxed afterwards I still go for monthly "top up" treatments.

JulesB

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Re: Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Sat Jan 17, 2015 3:34 pm

Oh, forgot to say, because I assumed everyone must be doing this: do nothing to aggravate it? For me, this meant:
No exercise
Kneeling on seats
No baths
Only organic, natural body washes and shampoos in shower (stuff runs down)
Wash that area only with a soothing oil or bland ointment e.g. Coconut oil, Diprobase ointment.
No sex
Take anti-inflammatory and skin repairing supplements (omega 3, 6, 7 and 9; turmeric, zinc, calcium citrate, vit E, vit D, B vits, co-enzyme Q10, hyaluronic acid)
Low oxalate diet
No tight clothes
No knickers (when at home and when not having period)
Wash clothes with hypoallergenic detergents
Use only organic non-bleached cotton panti pads and sanitary towels
No tampons
Keep lubed all the time (I use coconut oil)

JulesB

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Re: Saginil gel, acupuncture and manual desensitisation

Post  yoginimom on Fri Jan 23, 2015 4:13 pm

what all is in the saginil gel? I'd be curious to try that one, but i'm always really leery of trying anything new that may make things worse.

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Re: Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Fri Jan 23, 2015 8:11 pm

It contains substances that are naturally found in plants and other foods or our own bodies that have an anti inflammatory action and restore normal mucocutaneous function and lubrication and regulate nerve activity. These are: adelmidrol (a precursor to palmitoylethanolamide), hyaluronic acid (aka sodium hyaluronate), phytosphingosine and quercetin. If you are interested in the science of palmivethanolamide see: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3500919/
It also has vitamin E, which some women with vulvodynia have reported soothing with topical application, and castor oil. Other ingredients:
Noveon® AA-1 Polycarbophil - gives the gel excellent bioadhesive properties (clings to the skin cells)
Sodium hydroxide - loads of creams have this to adjust the PH, but it is caustic soda which is a a skin irritant, so I am usual very dubious of creams that have this in
Phenethyl alcohol - found in a variety of essential oils
Methylparaben - a paraben commonly used in cosmetics, etc. it is a fungicide and anti bacterial agent so extends the shelf life of products. There has been a lot of controversy about the use of paragons in recent years, hence lots of "green" products declaring they are paraben free.

I have no idea what will sooth and what will irritate me. I assumed that only natural products such as coconut oil and sweet almond oil were all that I could tolerate. So, as I said, I delayed trying the saginil, but I am so pleased I did in the end. You will find some stories on the internet proclaiming instant pain relief after use of saginil gel. As I said, it took longer with me, but it was definitely a factor in reducing my pain. Now I am "better" I am experimenting with lubricants because I now have vaginal dryness due to menopause (the joys of being a woman!) - so called natural water based lubes and vaginal moisturisers such as Yes and Sylk sting me immediately (whereas others say these were the only things that didn't sting them!), whereas WooHoo seems ok (from my single tentative test of it). For the moment, I am sticking with the oil based lubes: pure coconut oil or Yes oil based - my dermatologist told me Yes oil based has nothing in it but natural oils and she usually finds that oil based lubes are tolerated by those of us with vulvodynia whereas the water based one are not. I shall continue my investigations!

Good luck if you do try Saginil gel - I hope it works for you.

JulesB

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Re: Saginil gel, acupuncture and manual desensitisation

Post  yoginimom on Fri Jan 23, 2015 9:37 pm

Thanks! I will have to ask my Dr about it. Can you buy it over the counter? Or do you need a percription?

I've also had really good sucess with acupunture. I also started taking lions mane because it's supposed to help with nerves. So i appreciate your posts about your findings.

I think the saginil may be my next thing to try. Thanks for your input!

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Re: Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Sat Jan 24, 2015 10:06 am

You cannot get it in this country (why on earth not!). You can get it direct from the manufacturer in Italy from their website at: http://shop.epitech.it
You can also get a wash that I use (around external labia, not internal) and oral tablets (v costly) containing the palmitoylethanolamide in oral form. I took the oral tablets too - before the saginil in fact - I am more willing to eat these supplements than apply them on my lady bits - not sure how much they helped though. You no not need a prescription and there is no problem with ordering from abroad because saginil is not classed as a medicine, it is classed as a food suppliment because the active ingreidents all all from natural food sources. You pay by PayPal on the site, so no problems with currency. The site is in English, as are the instructions that come with saginil. I have found them very reliable with the package arriving by FedEx after only a few days.

Isn't the acupuncture great? Do you have oriental or western acupuncture? I have western - she sticks the needles in my sacrum, wires them up and I have pulses of electricity zapping me for 30 mins - very effective.

I do think, as my dermatologist said, that it is worth going all out with this condition - find what works for you (or at least doesn't aggravate it) and do it all! Me: manual desensitisation; acupuncture; pelvic floor exercises (I can recommend a book); saginil gel; and a whole kitchen cupboard full of vitamins, minerals and other herbal supplements.

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Re: Saginil gel, acupuncture and manual desensitisation

Post  yoginimom on Sun Jan 25, 2015 12:46 am

Looks pretty promising, i found a study on the main ingrediant.

http://www.ncbi.nlm.nih.gov/pubmed/24051946

Thanks for the info! I'm going ot try it.

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Re: Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Sun Jan 25, 2015 8:27 am

Yes there does seem to be scientific evidence that palmitoylethanolamide works well in reducing neuropathic pain. I hope saginil works for you. Let us know on this forum. It certainly worked for me and another of my GPs patients who declared it had changed her life. I am sure you, like me, try not to get too excited by a possible miracle cure - we know, with this condition that what works for one person doesn't work for another. But I sincerely hope it helps to relieve your pain, and if it does, others will be brave enough to try it.

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Re: Saginil gel, acupuncture and manual desensitisation

Post  yoginimom on Mon Jan 26, 2015 5:24 am

Looks like they don't ship to North America, and no one over here makes it. Big time bummer. Sad

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Re: Saginil gel, acupuncture and manual desensitisation

Post  JulesB on Mon Jan 26, 2015 9:29 am

Have you tried emailing Epitech? They have a good customer support - they always reply to my emails fairly soon. Perhaps they can give you the price of shipping to Northern America ( brace yourself!)
customers-service@epitech.it

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Re: Saginil gel, acupuncture and manual desensitisation

Post  Erick96 on Wed Sep 23, 2015 8:59 am

Thanks for this wonderful post on acupuncture. This is a holistic treatment and getting popular nowadays because if it’s medication less healing. Last week my grandmother visited acupuncture meadowvale clinic and they have suggested her to take 4 sittings for her leg pain treatment.

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Re: Saginil gel, acupuncture and manual desensitisation

Post  mary jane on Fri Jun 23, 2017 5:53 pm

Thank you so much for this post !! I found the product on amazon and will be ordering it soon !!!
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