Vulvodynia Support
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» Hope to all my suffering ladies
Need opinions on birth control pill EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Need opinions on birth control pill EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Need opinions on birth control pill EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Need opinions on birth control pill EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Need opinions on birth control pill EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Need opinions on birth control pill EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Need opinions on birth control pill EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Need opinions on birth control pill 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!
Need opinions on birth control pill 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


Need opinions on birth control pill

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Post  Delilah1 Wed May 07, 2014 6:00 pm

Hello ladies. My daughter is 20 years old and in a loving and serious relationship. She is telling me she wants to go on the birth control pill. She is a virgin and has never used any kind of contraception. Having V myself, it worries me that she could develop it. I have read the theories that perhaps the pill contributes to the onset of V for some women. I have never used oral contraceptives myself. Does anyone have any opinions or advice? Would an IUD be better?

Delilah1

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Post  Alana3 Wed May 07, 2014 6:29 pm

An IUD isn't really recommended for women who haven't had babies yet. Plus they are excruciating to put in. They are however good if you have endo, adeno, etc., but can still be prone to infection! And if you haven't had a kid, they can be expelled by your uterus. Hence the reason I would never in a million years get one. Most 20 year olds don't have them.

It's not really proven that birth control can be a contributing factor to vulvodynia, I know plenty of women who aren't on it and have v. Take her to a specialist who has an interest in vulvodynia and see what they recommend. If you don't even know if she has vulvodynia, you could be stressing out over absolutely nothing.

I would just go to a doctor and see what they say. A doctor would know way better than anyone on here. I've been on bcps since I was 14 but have had pain since I was 3. I love the pill for the most part. But I also don't have vulvodynia anymore.

Also, just to add these are THEORIES. There is absolutely NO evidence whatsoever that states this is true. I just read an article that said that even discontinued, women still had pain. I wouldn't put on your daughter what happened to you, you are two different people. Go to a medical professional and get their advice.

Alana3

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Post  Delilah1 Wed May 07, 2014 9:21 pm

Thanks for your advice, Alana. I love my daughter so much and I never want her to have to deal with this horrible condition. It takes so much from you. It steals your self esteem, womanhood, confidence....not to mention just dealing with the pain everyday! It affects every part of your life. we all know- we've all been there and dealt with all of the same issues. I talked to my vulvodynia specialist. She said there is no direct evidence that oral contraceptives cause V. She said some of the experts believe there is a connection and some don't. Guess I just needed to hear what my fellow V sisters felt. Thanks

Delilah1

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Post  alessandria Thu May 08, 2014 6:07 am

Alana, some reading for you on IUDs real quick, because I think it's important for you to know: http://bedsider.org/features/243 . There are a LOT of myths out there about IUDs that I wish people got to hear more about, because they're actually great options. They're hugely prescribed around the world to women of all ages, and often a favorite method of birth control in terms of low systemic dose of hormones, great prevention of pregnancy, and lower risk for people who can't take the OCP (clotting disorders, migraines with aura, sexual effects, etc). They're actually awesome for a lot of things, and more and more used by young people. Many of my friends have Mirena, and a couple now have Skyla as well (we're all in our 20s, no one has kids yet, not one of us has had a nightmare experience with it!). There are some drawbacks to the Paragard in terms of causing more bleeding than baseline for some women, but I think Mirena is very well-tolerated by most. I had a Mirena prior to all of my V issues, and actually thought insertion/removal weren't anywhere close to the level of pain I had on a daily basis when my V was at its worst.

The OCP discontinuation is NOT a curative factor, but rather a "do no further harm" kind of thing, even if you ask the experts who believe the OCP instigates vulvodynia. Sadly, removing the cause doesn't mean you can reverse what has happened -- there's a whole chain of events that happen downstream of the cause. It's kind of like how you should stop smoking if you have lung cancer -- you'd still have the lung cancer, but you'd take away something causing it to progress more quickly or become refractory to treatment. There's good evidence that vaginal dermis changes with the OCP even in normal women, the question is whether that's a contributory factor or unrelated. Multiple subsets of V likely do not even have hormones as a cause, but regardless, why not remove a possible contributory factor if there is a safe and effective equivalent that definitely doesn't play a role? Women do not get better in this case from just going off the pill, but they stop provoking the feedback loop that keeps the tissues in a relative hormone deficient state (increasing SHBG). Topical hormone replacement is indicated for hormone-dependent V, not going off the OCP alone. The verdict is still out, but the verdict is still out on EVERYTHING in vulvodynia other than vestibulectomy. That's not to say that the hypothesized factors don't play a role, or that certain treatments do or don't work, just that we don't know what works and for who, and there aren't a lot of great tests to figure out who will benefit most from what.

So going back to the original question! It's up to your expert whether they want to try a hormonal therapy for your daughter. There are a lot of reasons people go on the OCP, but if she is solely on it for birth control purposes, there is no reason an IUD shouldn't work. I hope things improve!

alessandria

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Post  Alana3 Thu May 08, 2014 1:14 pm

Yeah, I'm good, doctor has way too much control over my body. With a pill, I can stop taking it at any time, with that, if they don't feel like pulling it, they wont. No thanks. Most people I talk to say you have continuous bleeding for 6 months to a year. I guess if you don't have endo it would work but nope, no way in hell. Frequent infections are not my bag. Plus there is just the concept of something unnatural being in your body for 5 years. That just sounds wrong to me. I've read enough to know that if you frequently get diagnosed with yeast and/or BV its not for you. And I get those infections all the time.

I'd say the pill or whatever you decide is a personal choice, if she doesn't have v than why not go for it? Just because you have it does not mean she will. Especially since there is absolutely no evidence saying that there is a link. If not 18k for a new vagina that was worth it haha... I hate being a medical rat.

Alana3

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Post  alessandria Thu May 08, 2014 4:02 pm

Alana, sorry, I didn't mean for you!! I think you have a uniquely complicated case because of the endo (and obviously it's up to you and your team what you feel is a good match for you!) I just wanted to make sure you knew the facts about IUDs regarding their safety, pain, etc, even if you have decided based on your other condition that they're not right for you. I don't want people to walk away thinking that the IUD is not an option for vulvodynia by itself, because that limits options in a way I don't think is necessary. I cannot even take the OCP safely because of other conditions I have without risking getting a stroke, and considering 10% of women are in the same boat (have a history of migraines with aura), I want people to know there is still a safe and effective birth control method out there for us and that a lot of what people think about IUDs is wrong. I think you and your doctors will know what's best for you, and no one should tell you otherwise. There are a lot of factors in medical history and on exam that can make IUD vs. OCP the better choice, but those are all readily apparent within a doctor's visit. For a lot of us with V though, there aren't any of those factors and the choice is left up to us about what kind of contraception we go for, so having the facts straight going into that discussion is good!

alessandria

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Post  Alana3 Thu May 08, 2014 6:38 pm

That's why I always say go to a medical doctor. No one knows what's good for anyone really, especially if they haven't been yet and don't even have the disease. For most people, most of this stuff works just fine, for us, well that's another problem haha. IUD's aren't wrong, but I was just saying, (like the pill) they aren't for everyone and was just saying stuff I have heard about why a young girl whos never had sex may not be the best candidate. Yes, they are deemed safe and effective, but sometime's that's not the way to go. Nuva ring and the patch are also other options. For me, the ring isn't an option because I'd be freaked it would do something to my vulvodynia, but my friend loves hers. So it's always something and a person's best bet is to go to a doctor, ask as many questions as possible, weigh the options and go from there!  Very Happy 

Alana3

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