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» Finally found a place for me...
Today at 4:08 am by mtsp

» UK Vulvodynia Clinics
Yesterday at 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

» There is hope after all!!
Wed May 16, 2018 2:50 am by Cbrimer28

» Getting to the point of wanting to End Everything ADVICE NEEDED
Mon May 14, 2018 6:49 pm by fairlight10

» Looking for advice!
Thu May 10, 2018 8:50 pm by KB365

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 …

Comments: 4

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 …

Comments: 5

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

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


HOPE - a success story

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HOPE - a success story

Post  aperson on Sat Mar 23, 2013 6:31 am

Hi everyone, I'm new here, but wanted to chime in on a public forum to drop some knowledge that you don't usually see elsewhere. Like you, I've spent a significant amount of time online looking for people's stories of triumphing over this horrible condition. Like you, I tried all the obvious fixes - no standardized laundry detergents, no shampoo down the back, a plethora of vaginal cremes, fish oil and a host of other natural medicines, altering my diet (I gave up alcohol and went gluten free for two months which...sucked). Like you, I struggled with debilitating body aches, and like you, I tried to have sex through the pain, AND like you, my relationship was ruined - my ex cheated on me with multiple people, saying that if I hadn't developed vulvodynia he probably wouldn't have strayed (but I know that was NOT a valid excuse, hopefully like you Smile ). I thought my final resort was medication, but I grew up with fairly holistic parents, and it seemed like a backwards solution - after all, medication hadn't started my condition, so how was it going to get me out?

I have a ways to go, I'm not fully recovered by any means, but I'm here as a success story, because most of the time in these forums you don't see success stories. The people who work their way out of vulvodynia seldom return to tell the tale. It is an ugly part of our lives and I imagine when we're out, we won't want to relive it.

So here's my tale, as short as possible: I'm a 26 year old white girl, no history of trauma or abuse. Two years ago I developed a UTI, and then two more followed within short order. I had never had one before, and, not knowing what the problem was, I waited FAR too long to go to urgent care. The strain from the first UTI damaged my muscles and nerves down there, the subsequent ones really pushed it over the edge. If you've ever had a UTI, you know that going to the bathroom can become a bit of a fear, so the trauma to my lower regions became severe as I tried to minimize urinating. THIS IS A MISTAKE. If you have to go, DON'T hold it in, you will do damage to your body.

As mentioned before, I was in a relationship at this time. The pain during sex started off fairly mild, it just felt kinda weird down there. Trips to the gyno revealed that there was "nothing wrong" - the worst diagnosis you can hear, as I'm sure many of you are aware. At least if there's something wrong, you can go about trying to fix it. Being told nothing's wrong is just perplexing when you're prettty sure you feel pain. Over the next six months the pain went from mild, to strong, and then finally unbearable. It got to the point where I couldn't sit down without excruciating pain. Itching, burning, discomfort, I've seen it all. Here's the next step: DON'T try to have sex through the pain. It should be obvious, but the obvious is never obvious when dealing with matters of the heart. For over a year I was in constant pain from the abdomen down. The only thing that dulled it was going to sleep, which was sometimes hard. I ate a lot of advil, as imagined, and I spent a significant amount of time on these forums feeling so awful for all the women like me, and especially for the ones who'd been suffering for 10, 15, 20 years.

When I found out my ex had been cheating, my body went into such a tension-overload, that (and sorry if this is tmi), I developed painful anal fissures. I'm almost thankful now, because it's what drove me to seek out physical therapy. PT was recommended from my gyno, and I went without expecting success. I'd been suffering for about a year and a half at this point, and I was resigned to living in constant pain, but of course, willing to explore whatever possible treatment was available. I am a changed person because of it.

My physical therapists showed me how the network of muscles and nerves that coalesce in our vaginal areas run all the way down our legs, it's almost like a web. As we put strain on our muscles, they tighten up, and actually shorten in length, cutting off circulation and damaging the nerves. What is the therapy like? The first part is fairly ordinary - breathe. The underlying cause of vulvodynia (that's vulvodynia, not vulvar vestibulis), is tension: so breathing exercises help you drop your pelvic floor and teach your muscles how to relax. I had to retrain myself how to sit the right way at work (I have a desk job), and I had to retrain myself how to go to the bathroom. My therapists gave me an exercise ball that I use daily. I roll around on it, find places where the muscles are tight, and do breathing exercises to loosen them up. Most importantly, I've developed a daily exercise routine. I have to do this daily, but it's worth it. I am SO much more flexible than when I started (which was only August). Results? The worst part of my vulvodynia, aside from losing my sex life, was that I had chronic pain in what I assumed were my kidneys, but turned out to be the muscles in my lower back. Within a month of exercising that pain was gone. Occasionally I have a flare up (closer to my period), but I'm telling you, the dissipation of that pain alone was what made me continue with therapy.

The second part is a little trickier. The therapists do minimally invasive therapy (like when a gyno does a check up, but no metal props and they're much MUCH gentler). The therapist will use a gloved hand, and gently apply pressure internally to where there is high sensitivity or pain. Then you apply breathing exercises and, in essence, work out those internal muscles too.

Now, I'm 26 and I've only had sex with two people in my life, but I'm not ashamed of my body, and I was willing to do whatever it took to get better, and that included working hard and being diligent. I know there are some of you out there (I've seen it on the forums), who tried therapy once, didn't have immediate success, and were too embarrassed or ashamed to be working that closely with a therapist. My advice to you: just DO it. For many of us, it took a significant amount of time, over months or years of stress and tension, that got us into this mess in the first place. You can't expect overnight success, and if you're embarrassed, just think of how you WILL get better through therapy. Medication is no sure fire way to victory over V, and most of the time you'll end up on several different doses with no long-term relief. The best thing to do is develop healthy habits.

I've been with my therapists now since August, and with the exception of a few rare, though uncomfortable flare-ups, my external pain is mostly gone. I can sit without pain, I can go to sleep easily and I never take advil anymore. If I feel tense, I exercise. If I notice I'm slipping into a tense moment at work, I breathe through it and the pain dissipates.

One thing I know is that I'm not ready to have sex yet. Internally, I still have issues, but not nearly as bad as before. The more I stretch, the more my muscles loosen up, and the more that happens, the less damage I'm doing to my nerves. The healing process is going to take some time, but therapy gave me something that I wasn't even anticipating, and that was HOPE. This condition may AFFECT me for a significant period of my life - I know that I have to exercise daily, likely forever, to prevent flare ups - but it will not RULE me.

The last note I'll say here is that I'm lucky enough to have affordable health insurance through my work, and I live in a large city with access to care. If you are not one of those people who has health insurance, go to a specialized therapist, just once, and have them teach you breathing techniques and exercises. You can even do the internal exercises on your own with the help of a dilator (which is territory I'm starting to move into now, also with success). They cost about $20 a piece, but it's well-worth it for the relief. Have the therapist show you how to use it if you're unfamiliar with your body (don't worry, I think a lot of us girls are, and there are no stupid questions). If there aren't physical therapists in your area, make a phone call. Just reach out and start a dialogue - you have nothing to lose and everything to gain.

Most importantly ladies, DON'T GIVE UP. We are so much stronger than we give ourselves credit for.

Wishing you all the best!

aperson

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Re: HOPE - a success story

Post  Sarah001 on Sat Mar 23, 2013 2:07 pm

Thank you so much for posting your story, I'm doing the PT approach myself and I'm sure it's my problem although I have a very long way to go due to another condition I have that complicates matters. I agree that lots of women give up too soon or more commonly don't do the homework in between sessions which is vital and I often read stories on here and other sites of women with UTIs, constipation and anal fissures etc and immediately think pelvic floor when I see them. I'm really pleased you're getting success from the PT and wish you a complete and permanent painfree pelvis in time.
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Sarah001

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Re: HOPE - a success story

Post  Kathy100 on Sat Mar 23, 2013 5:36 pm

Hi, thank you so much for sharing your story & the success you are having. It makes me more determined to continue. My story started in a similar way to yours with some pain with sex followed by UTIs . I saw various doctors / specialists had the usual raft of tests which all came back clear so I was told that there was nothing wrong. It didn't happen every time & was told it was just something to live with, drink cranberry juice etc. Later on I split with my ex so no sex meant no UTIs and it was the least of my worries. Then last August got burning V pain all the time & was soon balancing on the edge of chairs, not wearing jeans, seeing doctors specialists, etc etc.- my whole life turned inside out. Meantime I & my muscles were just getting more and more tense.

I've just started PT, stretches at home and am really hoping that it will help. Thanks again for your story and good luck.

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Re: HOPE - a success story

Post  Alana3 on Tue Mar 26, 2013 5:24 pm

Thank you for your story- mine also started too with a raging UTI and the idiot doctor I was seeing kept putting me on more and more antibiotics even after my UTI because I had burning itching, stinging- we all know how that goes. So because of that I got all sorts of fun stuff from over medicating like yeast infections and BV. Than I found out that the doctors office wasn't sterilizing their equipment properly so I got ureaplasma fricken disgusting!!!!

So I finally had enough and went to a urologist because I couldn't stop peeing and as well all know going to the bathroom every 5 minutes is not a thrill. So he couldn't find anything wrong with me, but did a pelvic and I flipped out it hurt so damn bad, so he was the one who suggested I go to see a physical therapist. I did that and it did help for a good amount of time, but unfortunately for me (afer 9 months of once a week therapy sometimes more) I relapsed and the pain became so bad that it was really hard to live my life. She suggested I go see a doctor in Orlando, Florida who told me that I had possible IC and endometriosis yet SHE TREATED ME FOR VULVODYNIA I later found out. I was uncomfortable with her touching me so I went back to the regular doctor and he said everything was fine and gave me diflucan for the yeast. Finally, I couldn't take it anymore, the doctor was a moron and the physical therapy which once helped wasn't doing the trick anymore.

So I went to another doctor who told me everything was fine and that I could go on acyclovir (herpes medicine) for my vulovdynia. Hold up- I don't have herpes AND that isn't even a treatment for vulvodynia!! Luckily, I broke out in hives (in retrospect this was luck) and had to discontinue taking the medicine. Finally, I found a vulvodynia specialist and he told me to try a compound and continue with the therapy just to see where it was going. He discovered I had strep. I took another antibiotic and got that taken care of (yay me). Unfortunately, the pain from vulvodynia was so severe I couldn't take it anymore, so I opted for surgery in December. However, once I got the painful skin and nerves removed I resumed therapy because my muscles were sore and tight. And I have seen so much improvement. I also dialate twice a day, but my doc wants me to consider botox, but I am doing physical therapy because I can see a difference currently. I hate this condition because not everything works for everyone. But for now, I consider myself a success because the painful nerves are gone and the therapy is helping. I just don't even want to consider botox, dear god that sounds awful! And even better, I just found out I was STD free (my ex cheated on me too) and that was a concern at one point tha a doctor had which put me over the edge.

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Re: HOPE - a success story

Post  aperson on Wed Mar 27, 2013 1:40 am

Hi Alana3,

I'm so sorry you had to deal with ureaplasma, that sounds just awful. I feel so terrible for the women who write about it on the forums. Question for you - post-surgery, have you had sex? My condition hasn't called for it and hopefully won't, but l'm curious about how much of the thrill is gone after having the nerves removed. (Then again, I suppose some thrill is better than none at all.)

It really is annoying that there's no set answer for V. I'm guessing it's because it was chocked up to classic women's hysteria in the past and no one bothered doing the research until relatively recently. The answers are so varied that it seems like one person might say "therapy solved it!" and another would say "i took antidepressants, but only on full moons when the tide was out", and another would say "i gave up eating fish, listened to some Beatles albums backwards and painted my room a different color" and you're left thinking WHAT? Really? THAT'S what did it?

I can't wait until there's more awareness in general, but then that's hard to obtain when it's such a private condition. None of my friends know. They just think I really don't like riding bikes haha. Smile

aperson

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Re: HOPE - a success story

Post  Alana3 on Wed Mar 27, 2013 1:47 pm

Your response made me crack up laughing! I love it!

Ok for surgery, it was a 6 week recovery I had it in December like I said, but I haven't had sex. HOWEVER, I use my personal stuff and it feels no different than before my surgery (except of course the excruciating pain is gone- pelvics are easier too and I passed my qtip test with flying colors I can't believe that made me want to die before I don't feel it now at all yay!), I am still lubricated and have every sensation that I have always had previously, so no complaints. I still get turned on, still have every sensation, but of course there's going to be some hesitation until I can get it thru to my vagina that hey, you're alright now, we've had many conversations she doesn't like me lol). Remember though it is different for everyone- I only had a partial vestibulectomy too so it could be different than if you got the whole thing done. But I don't regret it at all! I can't wait to have sex, but I am waiting for a boyfriend... I'll probably be 90 when I find him, but hey at least I can say my vag is working (tho at 90 I may not be lubricated ger)! The reason it's so varied is there's so many different kinds of pain and where the vulvodynia is. Some people have vaginismus where your muscles spasm, that's where I am right now, fun times! But at least all women have that to SOME degree, but nothing like what I or others on here experience. Mine was also provoked, but I had no problem riding bikes and thankfully horses as that is where I spend the majority of my life lol. None of my friends did know, but I finally opened up to them and I actually found out one of my friends has the exact same problem. When this condition affects 1 in 4 women at some point in their life, I feel like its a good way to educate people. There's actually a woman at my barn who complains of vaginal pain and everyone was making fun of her because she "isn't doing anything strenous" hey people THAT SHIT HURTS! They're like it's in her head, I got pissed, because if you're telling people that it more than likely isn't in your head and you have a legitimate problem. But yeah the treatments do vary and surgery is your last resort, but I don't regret my decision for a minute. It was the best decesion I have ever made for myself. I honestly hated taking pills, putting creams on, saying it hurts too bad to have sex, use the child speculum on me- enough was enough cut the damn skin out and let me recover and live a normal life!

Where are you located? Let me know if you have any other questions- but if you do end up going that route- I promise it's not a big deal!

Alana3

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