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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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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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