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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 …

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


More bad news.Anyone else on here unable to have kids?

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More bad news.Anyone else on here unable to have kids?

Post  sailor_moon on Thu Dec 04, 2014 6:09 am

So...I had a follow-up appointment to all the tests I have been having done. Turns out I have a lot more than just V to deal with....turns out I may not be able to have kids either.

My Estrogen is low, my LSH and FSH are out of whack....they are too high and one is not in sync with the other (or something like that, it's all very complicated and confusing). Either my pituarity gland is f*cked, or my ovary is f*cked and failing. If my ovary is the problem my chances of conceiving naturally are pretty much zero. And I mean absolutely no offence when I say this, but I really don't think I could bring myself to do IVF because there is no REAL guarantee someone isn't going to fuck up and put the wrong egg with the wrong sperm... also, I can't afford it. Doesn't it cost thousands of dollars? And other personal reasons. I know people will probably say " Well if you are against IVF don't whinge about not being able to conceive"...but hey, it is so hard to get my head around any of it.  I may change my mind later on but at this point I couldn't do it. And I don't think I could have a baby with V....I can not imagine how bad and painful the labor would be Sad

Worst part is I have no idea if my hormone imbalance is related to the V or not. In the meantime I am getting no treatment so I am still suffering V while feeling so fatigued like I have been hit by a train every single day.

I have to take the pill for a month and then after I bleed I need to take Clomifen (an ovulation stimulation drug) and on day 12 go back for a scan to see if I am ovulating via drug stimulation. If I do, it's a good sign. If not, I unfortunately won't be having kids.

And I am still waiting for an operation. Laparoscopy and Hysteroscopy to see what is going on inside...possible endometriosis and lord knows what else that could be causing vulvodynia.

Has anyone else had any of these sorts of issues, both physically and mentally?  I just can't get my head around it.  V is bad enough,  let alone all this shit on top of it.

Has anyone else gone through any if this? Any advice would be much appreciated. 

I probably sound like a petty whinging b*tch at the moment and I apologise if it comes across that way, I'm just feeling very confused at the moment.
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Re: More bad news.Anyone else on here unable to have kids?

Post  Alana3 on Mon Dec 15, 2014 7:52 pm

You know I have.. Never went thru the lap but a hysteroscopy I have. Prepare to bleed a lot... And my pain came back within a week. But hopefully youll get an answer. I'm at work, but let me know if you need to talk- I agree IVF is fucking ridiculous- and god only knows what those drugs do to you. Not good!

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Re: More bad news.Anyone else on here unable to have kids?

Post  sailor_moon on Thu Dec 18, 2014 10:53 am

Thanks Alana,

This shit sure is exhausting, I don't know how you dealt with it for 7 years straight! How on earth did you get through it without necking yourself? Neutral
Are you completely cured now or do you still have issues after surgery?

It just keeps getting worse and worse for me, more bad news each time...more and more problems. Ahhh we are only in our 20's, we are too young for this crap!

Lignocaine is the only thing keeping me sane at the moment. It provides the most effective relief out of everything I have tried, but ATM my symptoms are so bad [like itchy stinging nettles type feeling] that the Lignocaine isn't working too well. I am back on the pill just for the month so I have a withdrawal bleed and they can do an ovulation test afterwards using an ovulation drug, and I am wondering if the pill is making me worse, despite the fact that I am low in estrogen and progesterone, so you think it would be making me feel better rather than worse, giving me a hormone boost? I don't get it. I have certainly felt more exhausted and moody.

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