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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 …

Comments: 1

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: 8

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: 1

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 …

Comments: 0

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

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 …

Comments: 0

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


New here- please help

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New here- please help

Post  1989SBSC on Mon Dec 12, 2016 1:49 am

I've been reading these forums for the past year or more and have never posted anything online like this before. I'm overwhelmed and don't even know where to start. Up until a couple years ago, I never had any urinary tract/vaginal problems. Sex (intercourse) always felt good, and I didn't notice any burning feelings in my vagina or urethra. Then, I lived abroad for a year in a hot, tropical climate. I thought I had a couple yeast infections and UTIs while I was there, and I took antibiotics/medications to treat both. Because you can get access to medications without a formal prescription, I have a feeling that I misdiagnosed myself with these issues, and basically OVER treated myself. The reason I bring this up is that this is the only turning point I can think of in terms of the development of my symptoms (from nothing). The only other potentially relevant piece of information is that I was dating someone at the time with whom I was having a lot of "clit stimulation" sex for the first time (thrusting at an angle to hit my clit). I wonder if this somehow gradually did some amount of nerve damage?!

After I got back to the US, the next couple years were mostly fine health-wise. The only weird thing is that I started developing some urethra pain (not sure if I have IC?? Been reading a lot about that too). What's bizarre is that unlike most of what I've read about this condition, I do NOT have any pain while urinating. And it's not constant. It's a few days/per month, often before/around my period, where I have a slight burning feeling coming from my urethra (I think?? It's hard to pinpoint). It often seems worse with caffeine, dehydration, and chocolate I think may be a trigger too. Like I said, there's NO pain during urination itself. I've been to the doctor during some of the worst days of this, and have never gotten diagnosed with a UTI. Last month, it got really bad and I even found blood in my urine, but again, no UTI!! This lack of a formal diagnosis for these symptoms has been infuriating. Luckily, it's never so bad that I can function- mostly uncomfortable, and psychologically damaging to have a condition I can't figure out. But all this is nothing compared with a secondary issue I've been dealing with for the past couple years- and the reason I'm posting in this vulvodynia forum.

Again, this developed so slowly that I have trouble even remembering how and when it started. I started dating my now fiance about four years ago. The first year we were dating we had a great sex life- intercourse was enjoyable, my sex drive was high, and things were fine. Then sometime during year 2-3 of dating, I noticed that every month, the week before my period, sex would be painful. Specifically, the entrance to my vagina would sting/burn- even with plenty of natural and or artificial lubricant. As a result, we would usually avoid sex during this point in my cycle. It was consistent and annoying, but not a big deal since it was only a few days/month. Then gradually, the frequency of these symptoms started building. This brings me to today. It devastates me to say that this pain at my vaginal opening is now constant. The silver lining is that it isn't unprovoked (I guess I should consider myself somewhat lucky that unlike some of the ladies here, it doesn't hurt to walk, or wear certain pants). I can also isolate it VERY specifically to bottom of the opening (5-7oclock position of the entrance to my vagina). If I touch deeper inside, all along the walls, there's no pain. It's only at that spot of the opening. But it makes it impossible to enjoy sex. My very supportive fiance and I have basically stopped trying. Doesn't matter how turned on I am and how wet, I simply can't enjoy any penetration (finger or penis).

My PCP has not been helpful. Every time I bring up the symptoms (including one thing I haven't mentioned- I do tend to have some IBS symptoms at times), she tests me for yeast/BV/UTIs, and then shrugs. I finally went to a Planned Parenthood to get a referral, and went to a gyno who specializes more in my issues. She seems to think I have Pelvic Floor dysfunction (thinks the urinary/vaginal issues might be tension related and connected). She recommended I see a physical therapist for a few sessions, then go back to see her. I booked a PT consult, but the soonest I could get an appointment was for February (and I was lucky- most other clinics in my area were booked out 4-6 months!!). I'm hopeful that I'll see some results after that, but in the meantime...

I feel like this is totally screwing me up psychologically. I'm a happy, well-adjusted person, but as I know all you understand, having chronic pain that is not well understood or easily treated is making me depressed. Over the course of 4 years, I went from having sex with my partner a few times a week, to a few times a month, to not at all. I know I should be willing to continue with non-penetrative acts, but my libido has totally plummeted from all this stress. Not to mention I have terrible associations with physical intimacy. It breaks my heart that my fiance and I are in our twenties, and should be in prime of our sex life, and have flat out stopped having sex. And mostly, I'm frustrated that I have no idea why this started in the first place!!

I'm desperate for answers, and for relief from these symptoms. It's hard cause from what I've read, no two cases are alike. I wish I could see an obvious connection between foods that exacerbate my symptoms, for example, but I can't. The urethra burning aside, the vaginal pain is so strange in that I truly don't notice it at all, unless I'm stimulating that one area. I can slide a finger deep inside and not feel any pain, but if I so much as lightly press that bottom area of the vaginal opening, I get immediate burning pain.

I know this was a lot of information. I don't know what I'm looking for exactly- practical tips and emotional support I guess? I'm so happy with my fiance, and our relationship is so much more than our sex life, but not having sex when we're so young and relatively early in our relationship is unbelievable sad and frustrating. Anyone have a similar story? Or any words of comfort/wisdom? Until I can get the medical attention I need for this, I may have to start seeing a therapist just to work through this stuff..

1989SBSC

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Re: New here- please help

Post  PainBlogger on Tue Dec 13, 2016 7:12 pm

I definitely think you're doing the right thing by opting to see a physical therapist. It's unfortunate the wait for an appointment is so long. If you have access to psychological therapy too then I think that's worth seeking out in the meantime.

I'm not sure if you've read my post here: http://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement But I've managed to get back to a relatively pain-free life and am able to have pain-free sex again after two years of nightmare with this condition.

It's great that you have a stable and supportive relationship. I can absolutely relate to the frustration you have at not being able to currently have a 'full' relationship. But don't give up. At my worst I couldn't imagine how I'd possibly ever get better. But I am better. Be stubborn. Try anything and everything you realistically can (as long as there's no or only very minimal risk involved). There are some good books out there on overcoming pelvic pain and painful sex (some may not be all that helpful until you get to see the PT). Hopefully you'll find the right combination of things to help you get better. It can take a while, but lots of people do get better.

PainBlogger

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Re: New here- please help

Post  Debbie627 on Wed Feb 08, 2017 5:28 am

Please email me so we can set up some time to chat. I've been where uou are... desperate! I may have some advice for you. Ddc627@gmail.com

Debbie627

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Re: New here- please help

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