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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Pain medication

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Pain medication

Post  KJ on Fri Aug 23, 2013 3:25 am

I, like many of you, have been on amitripaline, nortriptaline, tramadol, Valium, Effexor, etc.... Right now the ONLY thing that works for me is Vicodin! I hate taking it too because I know it isn't good for me...but it works! There is a fine line in the medication world and I am just really scared that even though it is what allows me to work and be productive, that it is doing me more harm than good. Is anybody else having these internal fights with themselves about pain meds?

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Re: Pain medication

Post  EviE°Bee on Wed Oct 02, 2013 3:38 am

Vicodin seemed to give me relief for a lil while but I couldnt continue to take it because i'm taking gabapentin. :-\ i feel your pain though i dont like taking meds, period. I would take the vicodin only when i really needed it, if it was unbearable. My Dr said all these meds have some effect, most negative in the long run. I feel your pain, literally. We gotta keep going. Research, read others stories, and keep trying everything out there. I hope this helped a little. Muah. Good luck babe.

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Re: Pain medication

Post  mary jane on Tue Oct 08, 2013 10:09 pm

KJ, with all of those chemicals going inside of your body, try to eat as healthy as possible !
and add supplements, manuka honey umf 5, some magnesium...magnesium is pretty good for nerve pain !
drink smoothies from time to time, salads, kale, etc.
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Re: Pain medication

Post  Takver on Sun Oct 13, 2013 3:10 pm

First of all, congratulations on finding a painkiller that works! It's normal to feel nervous about taking strong pain meds. You can have quite a bit of control over it, however. The things to be concerned about are:

a) Side effects.

b) Liver damage from the acetaminophen.

c) Tolerance to the hydrocodone.

d) Addiction to the hydrocodone.

Let's deal with the acetaminophen first. In the UK, where it's known as paracetamol, they go to great effort to make sure that people are aware that it doesn't take much to cause damage, sell it in smaller quantities, flag up all meds containing it and so forth. In the US, the drug companies have a tight hold on this and do their best to make sure that patients aren't aware of the dangers. Check what meds you're taking that contain acetaminophen, and make sure that you don't get more than a total of 4g per day. If you're small (I only weigh about 110lb, for instance) or have other reasons to worry about your liver (e.g. high alcohol intake - although if you're drinking a lot of alcohol, mixing that with pain meds is a whole new issue), limit it to 3g.

Side effects. I've never tried hydrocodone, it's not used in the UK, but it sounds very similar to codeine. Anyway, just keep an eye out for those, and if they occur, talk about them with your doctor to see what can be done. If you get constipation, for instance, you might find that taking extra magnesium helps, or two tablespoons of whole linseed (flaxseed) taken every morning with two full glasses of water. The side effects tend to be irksome rather than dangerous, but keep an eye out for dizziness and impaired concentration -if affected, do not drink, drive or operate heavy machinery, etc.

Tolerance and addiction - not actually the same thing! Tolerance means that you find that the same dose is no longer working for you after a while, and you need to move up to a higher dose to get the same effect. With some medications, such as amitriptyline and gabapentin, there is a wide range of therapeutic doses, so this may be OK. With opioids, not so much. If you are on the maximum dose and you find that it's no longer doing much for the pain, go and have a serious chat with your doctor. You may find that switching to a stronger opioid helps, or combining meds, but at this stage it is very much something that needs to be handled by a doctor, preferably a pain specialist. You may also just have to give up on that med, or take it on an on-off schedule so that you don't build up a tolerance to it.

Addiction means that you can't stop taking the drug, or have serious problems when you try to do so. This is a danger with all opioids, and I also had very nasty withdrawal from gabapentin. The addiction doesn't have to be psychological. This is the main danger to watch out for. I'd suggest that you start keeping a diary of when you take the vicodin, and how often a day you take it. Ask your doctor how long they reckon it would be safe to take it for at a stretch without risking problems of this nature. If they say that you can take it indefinitely, find another doctor. Yes, some people can take opioids long-term without having problems, but it absolutely should not be the default assumption. Try a week, stop, see how you do. Then two weeks. You may not need to take the meds every day, which is much better for you if you can manage it.

For instance, I've taken the highest dose of co-codamol (codeine and acetaminophen) for a month solid on two occasions, both times combined with tramadol. I was in extreme pain due to acute calcific tendinitis in my shoulder. The first time I was stoned off my face, itchy, constipated, and generally out of it, but I was absolutely fine when I stopped. The second time, I was jittery and couldn't sleep much for the next week. Thankfully I've not had such long episodes of such acute pain since then, and the longest I think I've taken the highest dose for every day in a row is a week or two.

Don't worry about approaching your doctor with your concerns. A good doctor will see it as a sign of a responsible patient, and will be happy to work with you. It also makes it easier to get stronger meds if you ever need them. Building up a good relationship with your doctor is essential when you have chronic pain.
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Takver

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Nocturnal panic attack from co-codamol

Post  mary jane on Mon Oct 14, 2013 9:43 am

This is a warning to any potential co-codamol user.
After a one-week break from this drug, I took half a pill (I emptied half of a capsule) before bed Saturday night because I had horrible pain.
At 3 AM I woke up suddenly, I couldn't feel my left arm. MY legs were shaking and was feeling very light-headed.
I get up, feel like fainting, feel like something is seriously wrong. After crying out for an ambulance, I get even worse, room is spinning, my legs are spasming and shaking like no tomorrow.
Ambulance arrives, they tell me I'm having a panic attack Sad
I've never heard of a sudden panic attack manifesting so awful, I thought I was going to die Sad
Two days later and I still feel very dizzy.
I'm never taking these again for my ocasional pains.
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Re: Pain medication

Post  Alana3 on Mon Oct 14, 2013 2:51 pm

If you ever have another panic attack, try taking a Benadryl, they calm you down. But beware, any painkillers can cause that to happen, they all pretty much say anxiety on them. I try not taking anything stronger than Advil, I never felt that it really helped my pain, they just made me drowsy where I slept thru the pain. What a way of life..

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Re: Pain medication

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