Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
Rx is draining me HELP EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Rx is draining me HELP EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Rx is draining me HELP EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Rx is draining me HELP EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Rx is draining me HELP EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Rx is draining me HELP EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Rx is draining me HELP EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Rx is draining me HELP 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!
Rx is draining me HELP 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


Rx is draining me HELP

4 posters

Go down

Rx is draining me HELP Empty Rx is draining me HELP

Post  girlcraft Sat Jun 04, 2016 11:16 pm

I was officially diagnosed with Vulvodynia about a year and a half ago. Prior to that I had gone to the GYNO 7 separate times complaining of pain with sex, peeing, itching and every time they missed prescribed me with yeast infection antibiotics. I even went as far as taking boric acid to wipe out the "yeast infection" it was then I turned to a specialities who informed me of vuvlodynia. So not only did I have vuvlodynia but I was also making my condition worse by wiping out my ph balance and killed all the the good flora in my vagina.

Since then I have taken Prozac in the morning and Nortriptyline at night. Both of these antidepressants have been problematic for me. The dosages kept increasing because nothing was helping and once increased the side effects were getting terrible and causing cramping, stomach spasms, passing out, constipated, insomnia, you name it I've had it. I've also tried Wellbutrin in place of Prozac bc on paper it seems better but so far it hasn't done me any good. Also switching dosages and pills so often has thrown my emotions and body out of whack.

I've also tried taking cranberry supplements, probiotic supplements, a mixture of NAC, Vitamin C and Spurinal. Even went as far are putting hurts bee's chapstick on the vagina, which burned like hell, bc another forum suggested people have found relief from it. I've tried stretching my pelvic floor but not for a long period of time, and wasn't sure if the stretches I was doing were effective. I plan to try to continue the stretching and ingesting coconut oil, as I read that was a great cure for people.

PLEASE PLEASE help me anyone! I am 21 years old and miss being sexually active. I've tried so hard to be positive and look for hope but I am at my wits currently Neutral Embarassed No No

girlcraft

Posts : 6
Join date : 2016-06-04

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  emalita Sat Jun 04, 2016 11:57 pm

Can you provide some more information on your pain (below are some questions that may help)? Some people assume vulvodynia is only caused by overactive nerves or pelvic floor dysfunction, but after finally seeing about 11 different doctors I was diagnosed with inflammatory vaginitis. My pain was caused by too many unnecessary antibiotics, yeast creams, and OTC treatments. So, my flora is shot.

What does your pain feel like (e.g. stabbing, acid burn, prickling, itching, etc.)?
Where is your pain located (e.g. inner labia, vaginal opening, internal, etc.)?
Are there any physical changes to your vulvar appearance (e.g. whitening, scarring, etc.)?
Is the pain worse at any particular time (e.g. only after sex, going to the bathroom, after showering, during your period, etc.)?
Do you have excessive discharge, or discharge that makes your pain worse?
Do you know what the onset of your pain was (e.g. bad infection, first time having sex, etc.)?

Have you found any relief from your prescriptions? If so, can you ask that they be compounded into a cream that you apply directly to your vulva to reduce the side effects? I know gabapentin is commonly compounded in a cream for women with vulvodynia, but I'm not sure about Nortriptyline. I know my pain isn't nerve related; so I can't comment on the effectiveness of these creams even though my doctor did shove them at me.

Are you using only hypoallergenic products to reduce any possible chemical sensitivities or anything that may be keeping your irritation going? See the below link for some good suggestions:

https://vulvodyniasupport.forumotion.net/t2299-good-place-to-start-hypoallergenic-products-temporary-lifestyle-changes#13808

If you are concerned about possible UTIs, I would suggest trying a supplement called D-Mannose. However, my specialist says that it is the discharge from unhealthy flora that causes the vulvar and urethral burning in a lot of women. I know that is true for me because if I have a tampon in my symptoms reduce (the tampon stops the discharge from touching the vulva).

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  girlcraft Sun Jun 05, 2016 12:14 am

Thanks for the reply emalita!

I have a dull burning sensation on my labia and vagina always and a stabbing raw burning when inserting a tampon or during intercourse. Also I can't handle any stimulation to the clit (vibrators etc) for long, they make it very irritated as well. It's uncomfortable definitely but I am able to sit in a regular chair with no added issues. It is extremely sensitive when I wipe after going to the bathroom, the only differences I've noticed is red irrigation on the outside as well as an increase of discharge and smegma. The onset of the pain was sudden, I was fairly sexually active at the time, as I had mentioned I thought it was a yeast infection that wouldn't go away, it started off feeling like a yeast infection, was treated severely for that and after that was ruled out the doctor gave me antibiotics because it looked like I had an increased amount of Strep B, after the antibiotics I felt okay for about 3 months, the pain came back, I was given the antibiotics again, pain came back 1 month later, was given it a final 3rd time and it did nothing. After that I then went to the specialist who diagnosed me vulvodynia.




girlcraft

Posts : 6
Join date : 2016-06-04

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  girlcraft Sun Jun 05, 2016 12:17 am

Also I do not use any soaps or lotions, always use water based lube if I'm attempting to have intercourse, the only lube I found to be helpful was from the UK brand yesyesyes. Their company claims to make products for vulvar pain

girlcraft

Posts : 6
Join date : 2016-06-04

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  emalita Sun Jun 05, 2016 1:02 am

You definitely sound like your pain may be stemming from an issue with your flora due to all of the antibiotics you were on.

Do you monitor your pH at home? I do this maybe once a week to keep an eye on how I'm doing (not saying that if your pH is normal then you're fine, but it's a good baseline). I use a UK product called EcoCare Comfort Vaginal pH-Test Cotton Swabs, but there are cheaper pH strips out there. I just find this one super easy to use.

My specialist is in Arizona, and he does a test to determine flora health. I had a very high count of white blood cells and low lactobacillus (no other doctor told me this). I really recommend finding a vulvar specialist who will look deeper into your issue instead of just throwing nerve pain meds at you.

For some relief, you could try rinsing (not spraying) your vestibule with Gordon’s Boro-Packs after every urination (the brand Domeboro is basically the same thing). It comes in a powder that you mix with water in a squirt bottle, and I think one packet should be good for the whole day. My current specialist and another OBGYN of mine have recommended it. I've spoken to a handful of women, and some women on here, that say it is a miracle worker.

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  fairlight10 Sun Jun 05, 2016 9:13 am

Hi girlcraft I have been reading some of your posts. I have been diagnosed with vulva vestibulities 4years ago. I was prescribed amitriptyline originally but this did not agree with me. I was put on nortriptyline 20mgs which was increased to 30mgs last september to help relieve migraine. I take it at night like you. How many mgs do you take? I don't know why you are on prozac as well and taking it in the day. No wonder you are suffering with harsh side effects. So many of us with vulvodynia start off thinking it is thrush or a uti. So we throw everything at it and make it worse. I would go back to your gp they can change your medication. Also, the stress of having this condition can aggravate it. Try to keep calm. In the past this has helped reduce any pain or irritation.

fairlight10

Posts : 72
Join date : 2016-04-17

Back to top Go down

Rx is draining me HELP Empty RR: RX is draining me HELP

Post  Antaea Sun Jun 05, 2016 1:10 pm

Hi! I am very sad about what you're going through - and I agree with Emalita concerning lotions and creams and more. I would not use anything more than clear water and a natural oil, preferably almond- or coconut-oil. After some weeks you at try some lactic acid "vagitorier" (sorry, i don't have the English expression). Maybe you have to avoid certain foods too. I cannot dring lime-or orange-juice any longer. Even not diluted with a lot of water.
Some people get relief of frozen soaked black tea bags. Before I took Neurontin, I always had some in the fridge. I used four, let them soak in little water for half a minute and froze them. Afterwords I placed them directly on the burning area. It eased the pain immediately. At night I also used Xylocain (5% Lidocain) topical cream. This does not take nerve-pain, it only numbs the skin. It burns after applying to the skin. But severak women feel, it makes their situation worse. I felt the same after using it several times during one night.
And try Gabapentin - the brand name is Neurontin. Most people have mild and only temporal side-effects in spite of what you may read on the Net. After only three weeks I have none any longer. Could even take a little beer yesterday without feeling drunk today. Already after one week on the lowest dose the pain eased. At the moment I only have very mild pain, more feeling uncomfortable than real pain.... But when the intervall is longer than usual, the pain increases again. A local Gabapentin compound may help too. But at first your skin has to calm down and the bacterial flora has to renew itself. That may take several weeks.
Antaea
Antaea

Posts : 29
Join date : 2016-05-11
Age : 74
Location : Gotland/Sweden

Back to top Go down

Rx is draining me HELP Empty Re: Rx is draining me HELP

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top


 
Permissions in this forum:
You cannot reply to topics in this forum