Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
Feeling very isolated, in need of a connection EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Feeling very isolated, in need of a connection EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Feeling very isolated, in need of a connection EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Feeling very isolated, in need of a connection EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Feeling very isolated, in need of a connection EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Feeling very isolated, in need of a connection EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Feeling very isolated, in need of a connection EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Feeling very isolated, in need of a connection 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!
Feeling very isolated, in need of a connection 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


Feeling very isolated, in need of a connection

+6
tinkerbelle2
Alana3
burningturning
Sunflower82
Leslieg
LearningToDeal25
10 posters

Go down

Feeling very isolated, in need of a connection Empty Feeling very isolated, in need of a connection

Post  LearningToDeal25 Wed Oct 09, 2013 12:45 am

Hi, I am relatively new to this whole thing but I am already so tired of the loneliness and isolation it has caused that I just have to tell someone about it. So here it goes:

I've had a couple yeast infections before all of this. They were mild and cured quickly with Monistat kits. About five months ago I got one that was not responsive to over the counter treatment. It felt the same of the ones before, but it just wouldn't go away. I went to my OBGYN and she gave me a round of Diflucan. Symptoms got better for a day or two, but then quickly got worse. I went back, got swabbed, and was given another round of Diflucan. I went back when that didn't help, got swabbed again and tested negative for yeast overgrowth. I was beyond surprised. I am still constantly itching, burning, stinging and just generally feeling irritated down there. Sitting hurts, walking hurts, and bowel movements are the absolute worst. I have pain in my lower back (ovaries? Kidneys? I'm not sure), frequent headaches, and my digestive system has been completely dysfunctional. My OBGYN basically told me there wasn't anything she could do so I've made an appointment at an integrated health and allergy clinic as well as another OBGYN that seems to be more experienced than mine (and will hopefully have better bedside manner-I saw my doc 5 times in the last 5 months and she still doesn't know who I am!). I have been on probiotics, flax seed oil, garlic and cranberry supplements for about a month now. I drink monumental amounts of water. I've been trying the whole anti candida diet thing for a couple months as well, but lately my willpower keeps faltering. It's hard to maintain such a strict diet because I'm in college and I work part time. It's hard to control my stress levels for the same reason. I'm so confused as to whether I'm doing the right thing at this point. Is it a yeast infection that refuses to go away because I was overprescribed antibiotics as a child (and boy, was I ever)? Is it vulvodynia or vestibulodynia? Is it multiple conditions?

What's perhaps even more troubling than all of this physical pain is the fact that I've become completely, overwhelmingly, undeniably depressed. Every morning I wake up dreading the day ahead of me because I know it will be full of pain and awkwardly trying to get out of social engagements (I hate being around people now. The constant itching makes me so self conscious and the dietary restrictions exclude me from most things) I have no focus for the things that I am (was?) passionate about and I can't relate to anyone around me anymore. I am prone to depression, but I had things under control before this. In fact, things were going really well. I have the most wonderful boyfriend who has been so caring and patient with me, but the lack of physical intimacy and the fact that I am becoming increasingly withdrawn is putting a strain on our relationship. He puts the color in my world and I'm so scared he's going to leave me. I know I'm supposed to "be strong" and "have a sense of humor about life" but it just makes me feel so hopeless to know that I'll probably have to deal with this for years and years. This pain is so awful. The thought of living with it for the rest of my life just makes me want to give up on everything.

I know this is a stone cold bummer and it probably seems stupid to some of you who have been dealing with this for a long time, but I just had to express to someone how deeply this is affecting me. I'm scared, anxious, and confused and I just want to feel normal again.

LearningToDeal25

Posts : 2
Join date : 2013-10-08

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Leslieg Wed Oct 09, 2013 1:28 am

Hi learning, you are not alone in this.  It's exhausting but it sounds like you are on the right track and getting the help you need.  I've had similar experience starting w/ a yeast infection and then symptoms never really went away.  I mostly have raw sore red, inflamed skin with pin prick feelings and some itching.  I use lidocaine to survive.  I thought I had a skin condition called lichen planus but have been recently told by a new specialist that I don't.  She refered me to allergy testing for chemical irritants that I just completed.  Apparently I have an sensitivity  to an ingredient in the soap and shampoo I've been using.  I'm in shock to be honest because I really didn't think they'd fine anything.  That also said it will take 6-8 weeks to heal.  Maybe more.  I haven't used the products for over a week.  My symptoms were mild so I was hopeful but now having a bad night.  I keep praying things will get better and better.  I've read many many success stories....we will all have our own!  Please try to stay positive....I know it can be hard.  Lidocaine helps some of us so I would ask your doctor if its Appropriate for you.  It can help you enjoy a social event and decrease distraction during work and school.  Rinse after you pee and try to keep things cool and dry with loose clothes until you feel better.
I had a lot of antibiotics too prior to this.  I think they change our bodies immunity and create sensitivity. I often wonder if diflucan can do that too in the GI tract which is strongly involved with our immune system. Unfortunately, answers don't come quick.  Just try to attempt only one remedy at a time and give it time.  I did not do this and now I have difficulty knowing what has helped. For example I tried switching soaps awhile back but only gave it a week or two. When I didn't feel better I switched back. I didn't know the healing time was was so long.  Also, some reactions dont occur for days after exposure. Diet changes can take months as well as new medications.  Keep a journal if you can...you may find a pattern to your symptoms.  Trying to help you avoid the mistakes ive made. listen to the specialists. if they are not a vulvar specialist , find one.  regular gyno truly just dont know.  Hang in there.  For home relief women use baking soda baths, rinsing, ice packs, rest, etc. wishing us all well sooner than later!  xo

Leslieg

Posts : 86
Join date : 2013-08-09

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  LearningToDeal25 Sat Oct 12, 2013 1:05 pm

Thank you, Leslie. It's really been helpful to see that I'm not the only one going through this (not that I would ever wish it on anyone!) I think your one-remedy-at-a-time advice is sound and I will definitely keep that in mind. My symptoms seem to gradually be getting better, save for a flare up or two each day. Positivity definitely helps, even if it isn't always easy. Let me know how switching products goes for you.

LearningToDeal25

Posts : 2
Join date : 2013-10-08

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Sunflower82 Tue Oct 15, 2013 7:46 pm

Hi,
I have been suffering with v for years now and the
Last 4 years have been the worst. About a year and a half ago I hurt my back hoovering ( of All things) since then my v symptoms got worse. I recently had a nerve block in my back for a trapped nerve and surprising this has really helped my symptoms I've gone from not being able to have sex to being able to have sex with hardly no pain, on ocassons there complely reduced feeling but better than no pain. As u mentioned lower bk pain it maybe worth asking your GP for a MRI.

Hope this helps

Kt

Sunflower82

Posts : 82
Join date : 2012-02-17

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  burningturning Tue Oct 15, 2013 8:58 pm

Could that be cystitis? Do you experience pain during urination? In some cases, cystitis could last for 3-4 months.

burningturning

Posts : 24
Join date : 2013-09-24

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Alana3 Tue Oct 15, 2013 10:01 pm

Cystitis can be permanent too. .

Alana3

Posts : 1093
Join date : 2012-09-25

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  tinkerbelle2 Thu Oct 17, 2013 10:43 am

Hey honey, I was feeling quite isolated too but since finding this forum I feel much happier! You aren't on your own with this.
tinkerbelle2
tinkerbelle2

Posts : 303
Join date : 2013-09-28
Age : 31
Location : Brighton, England, UK.

Back to top Go down

Feeling very isolated, in need of a connection Empty see your docotr and get checked for BV

Post  lavrose Tue Oct 22, 2013 1:13 pm

Go to a good GYN or more than one GYN and get tested for BV cuz i learned over the years that if your yeast infection is unresponsive to the creams you have a bacterial infection or somethin else goin on..Thru my v struggles Ive cultered out for BV many times..
lavrose
lavrose

Posts : 152
Join date : 2012-04-28

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  vetinprep Thu Oct 24, 2013 10:39 pm

Hi!
I know it's such an isolating and lonely condition-and it's all so stressful! But you're definitely not alone and you should know there is hope and there are treatments!
I second the recommendation about going to a gyn who's really good with treating/diagnosing vaginal pain. I had to go to four separate gyns before I found one who had an explanation for my pain (which was vestibulitis).
It's really annoying but you definitely need to take charge of your health-if they keep prescribing those meds that aren't working get yourself into a clinic that deals with different pain disorders. And seriously don't give up-it may take awhile but there are a myriad of treatments out there so the situation isn't hopeless!

vetinprep

Posts : 4
Join date : 2013-10-24

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Kathy100 Fri Oct 25, 2013 12:06 pm

Hi, it is really stressful & scary - especially when you are waiting for a diagnosis and first find out. To start with I used to cry a lot with the pain and hopelessness of it all. This forum helps a lot - you're not on you own. Gradually you start to find the right people to help you & this can take a while & be stressful and then you start to get better. I'd echo the others & just try one med at a time some will work; some won't (e.g. lidocaine made me worse, notriptyline helped me), find a gynae and/or pain management specialist who is familiar with this condition. The other thing I did to help me with the mental side of things was see a therapist who specialised in helping women with chronic pain conditions such as V.

Difficult but try not to think about the future too much for the moment - it just makes you feel worse - I try & go with one day at time approach & compare with how much better I am now to what I was a few months ago.

Kathy100

Posts : 95
Join date : 2012-12-17

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Takver Mon Oct 28, 2013 10:52 am

Hi, welcome to the forum. Out of curiosity, why are you taking flaxseed oil?

My gynae found that a change in shampoo had flared up the vulvodynia too. It's definitely worth going through all your toiletries, laundry detergents etc.
Takver
Takver

Posts : 41
Join date : 2013-09-11
Location : UK

Back to top Go down

Feeling very isolated, in need of a connection Empty Re: Feeling very isolated, in need of a connection

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum