Vulvodynia Support
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» Hope to all my suffering ladies
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!! EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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 …

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- …

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

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 …

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 …

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 …

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 …

Comments: 3


MY VULVODYNIA IS COMPLETELY CURED - PLEASE READ!!!!!

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Caroline1109
ivyrose
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Post  ivyrose Thu May 03, 2012 11:35 pm

Hello. Please read this, I want to help as many women as possible. One thing I have learned over the last 3 yrs suffering from this condition is NOT TO ACCEPT EVERYTHING YOUR DR TELLS YOU.

I posted on here a while ago claiming that I had experienced a large decrease in my provoked pain due to taking baking soda baths. Since then the pain came back with vengeance and I realised I was wrong. The depression hit again. Suddenly, a light bulb went on in my head - I had been bedridden the whole week of my miraculous 'cure' due to having the flu. I started to wonder whether my pain was something to do with my back, as it seemed to decrease to the point of almost disappearing completely when I was lying flat for a long period of time. Then, I remembered something else. Just before the onset of my pain, I had experienced a strange spasming and pain down the left side of my back, left leg, foot and toe. This pain and spasming was on and off and had been going on about 2 months previous but I never saw a doctor about it. Embarrassingly, the pain came to a head one time in the middle of sex when my toe started spasming and then shot out at a right angle, causing excruciating pain to run up and down the inside of my left leg. It was the time I had sex after this that my vulvodynia had started, at first only in the left hand side (then it eventually spread to all over the vulva). But I had completely shrugged this toe thing off until now, not connecting it with the vulvodynia. That's why I never mentioned it before. (also, its a bit embarrassing so I didn't really tell anybody!)

I asked a doctor who was experienced in vulvodynia about whether my problem could stem from these foot spasms, and he shot down the idea before I had even finished explaining it to him and put me on amitriptyline. Didn't even test my blood pressure or anything first. This is a Dr who claims to have been 'treating' women with vul. for 40 yrs, but who admits he has not ever found a definitive cure for any of his patients. Basically when I saw him (feeling completely miserable with and deserted by my body aged 18) he told me that it would be likely I would suffer from the condition my whole life. He didn't exatly sugar coat it and when I left the hospital I burst into tears. I decided I needed to take matters into my own hands.

Through the Vulval Pain Society I heard about a chiropractic group called the McTimoney Group based in the UK, who are carrying out research on whether back problems can cause vulvodynia. I contacted the group and booked an appointment.

My chiropractor identified that my pelvis was incredibly misaligned - the left side more than a centimetre higher than the right. The symptoms such as the spasming and shooting pain I described led her to believe that I had a trapped nerve somewhere in my back, probably caused by this twisted pelvis. When I started the chiropractic treatment, I came off the amitriptyline first to make absolutely sure that it wasn't just the drugs that were dulling my provoked pain. The first few sessions left me in incredible pain afterwards. The spasming that had mysteriously disappeared after the onset of the vulvodynia came back. I tried sex during this time and was forced to discontinue, it was so painful. I was sceptical of the treatment at first and it is certainly pricey.

However, after about seven sessions (a session a week) with the chiropractor sorting out my back and pelvis my pain has gone from about 9/10 to 0.5. It has pretty much disappeared completely and my chiropractor is now certain my vulvodynia was caused by a trapped nerve. She has completely straightened my pelvis and I have responded very well to the treatment. Everything is in the right place now! I will have to visit her intermittently throughout my life to make sure the pain stays away and my back / pelvis doesn't slip back to the way it was, but we are both optimistic that in a few more sessions my pain will have disappeared completely. I am over the moon.

I am now living my life the way I have wanted to for so long. I have a new boyfriend and painful sex is no longer an issue. It feels like a miracle. Manipulation from a chiropractor is all it has taken for me to go from feeling like hot pokers were on my skin during all sexual contact to no pain. I am so happy and relieved, but in a way I also feel quite guilty that I have found a cure when so many women out there are still suffering from this terrible affliction. PLEASE, even if you think it unlikely to be the cause of your pain, go see a chiropractor. It might be the best thing you ever do. The money is worth it, and at the McTimoney practice all patients' case studies will (anonymously) support their research, so you are doing your bit for other women with the condition!

I have an appointment to see my Dr in a few weeks to see 'how the amitriptyline is progressing'. I'm going to give him a piece of my mind. I think that many of the problems with this illness is Drs only want to treat the symptoms and not find the cause. In my opinion this is negligence. Tricyllic antidepressants are not pretty. The ami made me pile on weight and act a bit like a vegetable. Over 2 months after stopping it I am still suffering from terrible insomnia. It is not worth it when there are other methods to actually CURE vulvodynia.

I hope this helps. If anyone would like more information about the McTimoney Group and which particular chiropractor I visit please contact me, I am happy to help.

Good luck!!


ivyrose

Posts : 27
Join date : 2011-07-16
Age : 30

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Post  ivyrose Thu May 03, 2012 11:38 pm

I would also like to add that my chiropractor has 2 more success stories where the vulvodynia has completely gone away for her patients. It certainly is very promising.

ivyrose

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Age : 30

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Post  Caroline1109 Thu Oct 18, 2012 10:06 pm

I am so pleased for you - fab news!!

Caroline1109

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Post  tinkerbelle2 Thu Dec 05, 2013 4:04 pm

Stories like this give me hope and it is so vital to have hope when you get so so low!
tinkerbelle2
tinkerbelle2

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Age : 31
Location : Brighton, England, UK.

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Post  EverythingIsDifferentNow Tue Oct 21, 2014 1:16 am

i am visiting a physical therapist on thursday. I've also experienced vulvodynia, i thought it was gone but nope it's still here. The symptoms lessened due to some life changes, but I KNOW it's my pelvis or spine that's causing the problems because everything you just said is completely relatable. I even teared up because looking at what you said might be the answer to my problems. I'm so nervous. I'm only 16 and i feel miserable and my family doesn't take it too seriously. At least my mom agreed to take me to a physical therapist and my physical exam is on thursday. REALLY hoping this works, i'm sure it will. Thanks so much for posting sunny

EverythingIsDifferentNow

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Post  yoginimom Tue Oct 21, 2014 4:15 am

i've been exploring the option of getting the botox treatment for the pudendal nerve entrapment. Has anyone ran across this information?

http://www.pelvicpainrehab.com/pelvic-pain/726/how-do-i-know-if-i-have-pn-or-pne/

There is also this nerve:

http://emedicine.medscape.com/article/1234809-overview

which would explain why chiropractic helped. This makes me feel much more hopeful.

I'd love to know what you all know about this type of approach?

yoginimom

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Post  meelie Tue Oct 21, 2014 11:50 pm

In the medscape post which nerve exactly are you talking about. seems to be talking about different ones and I want to tell my chiropractor about it. Thanks.

meelie

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Location : Barnesville, Ga

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Post  yoginimom Wed Oct 22, 2014 2:41 am

The Iliohypogastric Nerve, Ilioinguinal Nerve, and Genitofemoral Nerve are probably all relevant. But the Genitofemoral Nerve (L1 and L2) way more relevant if your issues are in the urethra area and the Ilioinguinal Nerve (T12 and L1 ) for the labia. If your chiropractor adjusts T12 to L3 it would cover them all though. I'm going to ask my osteopath to adjust all of them and hope for the best. Smile

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Post  yoginimom Wed Oct 22, 2014 3:17 am

PS the The pudendal nerve is S2-4 ... i'm not sure the chiropractor can adjust that area. But most Osteopaths and Cranio Sacral therapists can.

I'd love to hear what your chiropractor has to say about this, please keep us posted!

yoginimom

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Post  meelie Wed Oct 22, 2014 3:29 pm

thanks, I will. I will print the info and take it to him. so embarrasing to talk about.

meelie

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