Log in
Similar topics
Latest topics
Gabapentin Gel. or other topical creams
Thu May 10, 2018 9:43 am by Rosie21
Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.
Comments: 2
Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?
Sat Aug 01, 2015 4:17 pm by Fielder
Hi everyone,
I'm a newbie. I live in the UK.
I'm trying to work out the best cushion to get for my vulvodynia. I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.
I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …
I'm a newbie. I live in the UK.
I'm trying to work out the best cushion to get for my vulvodynia. I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.
I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …
Comments: 11
An absolute success story- please read!
Fri Mar 08, 2019 10:57 pm by Persevere1990
Dear All,
I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.
I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …
I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.
I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …
Comments: 0
I'm sorry im rambling
Thu Feb 21, 2019 5:49 am by Jet227
hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …
Comments: 1
New member need advice please
Thu Feb 28, 2019 11:33 pm by PANDORA123
Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.
Thanks
Thanks
Comments: 5
MonaLisa Touch
Fri Feb 08, 2019 7:35 pm by rl2091
Hi All,
I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …
I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …
Comments: 3
Diagnosed Recently
Tue Jan 08, 2019 3:55 pm by flissyg
Hi All,
I’m so glad I’ve found a place where there are others who understand how I feel!
So this is my story:-
I’m 36, and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”. The following morning I woke up …
I’m so glad I’ve found a place where there are others who understand how I feel!
So this is my story:-
I’m 36, and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”. The following morning I woke up …
Comments: 4
New and need advice and help
Wed Dec 05, 2018 3:26 pm by Cin124
Hi everyone,
About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …
About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …
Comments: 6
New here would very much appreciate advice at the end of my rope
Wed Jan 09, 2019 9:09 pm by Jma990o
This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …
Comments: 3
Saginil gel, acupuncture and manual desensitisation
4 posters
Page 1 of 1
Saginil gel, acupuncture and manual desensitisation
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- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
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)
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- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
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.
yoginimom- Posts : 60
Join date : 2014-08-08
Re: Saginil gel, acupuncture and manual desensitisation
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.
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- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
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!
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!
yoginimom- Posts : 60
Join date : 2014-08-08
Re: Saginil gel, acupuncture and manual desensitisation
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.
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.
JulesB- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
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.
http://www.ncbi.nlm.nih.gov/pubmed/24051946
Thanks for the info! I'm going ot try it.
yoginimom- Posts : 60
Join date : 2014-08-08
Re: Saginil gel, acupuncture and manual desensitisation
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.
JulesB- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
Looks like they don't ship to North America, and no one over here makes it. Big time bummer.
yoginimom- Posts : 60
Join date : 2014-08-08
Re: Saginil gel, acupuncture and manual desensitisation
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
customers-service@epitech.it
JulesB- Posts : 22
Join date : 2015-01-14
Re: Saginil gel, acupuncture and manual desensitisation
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.
Re: Saginil gel, acupuncture and manual desensitisation
Thank you so much for this post !! I found the product on amazon and will be ordering it soon !!!
mary jane- Posts : 345
Join date : 2013-10-05
Location : UK
Page 1 of 1
Permissions in this forum:
You cannot reply to topics in this forum
|
|
Fri Oct 23, 2020 12:04 am by ringostarr26
» Please tell me this can get better
Sat Jul 18, 2020 7:38 pm by sammykramer
» By no means cured, but doing much better!
Mon Mar 16, 2020 1:26 pm by tinkerbelle2
» How I cured my Vulvodynia!
Sat Dec 07, 2019 11:54 am by Millie
» 7 months since the diagnosis
Wed Aug 14, 2019 2:38 am by agtoronto
» Gabapentin Gel. or other topical creams
Sat Jun 15, 2019 5:22 pm by mary jane
» IMPORTANT FOR UK SUFFERERS
Sat Jun 15, 2019 5:21 pm by mary jane
» Help New Diagnosis
Sat Jun 15, 2019 5:07 pm by mary jane
» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Tue Jun 11, 2019 12:56 am by VVSSufferer