Vulvodynia Support
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» Hope to all my suffering ladies
Im So Angry About All Of This EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Im So Angry About All Of This EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Im So Angry About All Of This EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Im So Angry About All Of This EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Im So Angry About All Of This EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Im So Angry About All Of This EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Im So Angry About All Of This EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Im So Angry About All Of This 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!
Im So Angry About All Of This 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


Im So Angry About All Of This

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Post  BpCookie Wed Jan 25, 2012 9:39 pm

Ive become this angry person. This vulva pain has turned me into someone that Im not. I used to have a great out look on life, I was always joking and laughing but now all I do is cry and get angry. Im so angry that I have to go through this every day and Im angry that my Gyno hasnt found anything to help me, Im angry because I cant have sex with my husband. I just want this to go away or improve enough that I can have a life again. I want the old me back but I dont ever see that happening.
BpCookie
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Post  mmorgan Wed Jan 25, 2012 10:18 pm

What treatments have you tried?
Keep your head up hun.
mmorgan
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Post  BpCookie Wed Jan 25, 2012 10:46 pm

Hello Mmorgan, Thank you sssssoooooo very much for replying. The last few months I have felt like I was invisible. I joined some other support groups but nobody replied to me. It made me feel even more alone.

Ive been put on Amitrytiline (tablets) but couldnt take them because of side effects. Tried Lidocaine ointment but it made it worse. Used some suppositories that was supposed to sooth the area and also probiotics. Now I am taking Gabapentine, Clobetasol ointment, Amitriptyline ointment, Neogyn lotion, Terrasil, Emu Gold oil, A and D ointment, oatmeal baths, I sit on an ice pack and I take my back pain medication in hopes that it will help the LSC pain. I was also given an anti depressant and something for anxiety to help with my depression and anxiety that this has caused.

Again, thank you so much for being kind enough to reply to me.
BpCookie
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Post  mmorgan Thu Jan 26, 2012 1:07 am

I'm sorry, I think the older members keep in touch through the Facebook forum. If you have a facebook, you should pm Naomi. I barely joined today and it's so wonderful to finally put faces to the usernames around here.

You have tried quiet a lot of treatments. Usually Sarah001 chimes in and gives really good information, I hope she finds this and could give her input.

Is your pain level the same? Worse? Better since this all started for you?


Now I am taking Gabapentine, Clobetasol ointment, Amitriptyline ointment, Neogyn lotion, Terrasil, Emu Gold oil, A and D ointment, oatmeal baths, I sit on an ice pack and I take my back pain medication in hopes that it will help the LSC pain.

Your currently doing all these methods at one time?
mmorgan
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Post  BpCookie Thu Jan 26, 2012 1:24 am

Hello there, The on-line support groups I was talking about, they were not a part of this Vulvoynia Support group. They were some others that I had found. Im really glad that I found this one.

When I was first diag. with this a year ago, it wasnt too bad. It felt like a bad YI. As the months progressed it started to be more painful, the level of pain got increasingly higher and the area of pain was in a wider area. Before it used to be painful only in the Labia Minora area and now its the entire Labia Minora, Labia Majora, all the way to my pubic area and it goes down my buttocks. I cant imagine going through this kind of pain for the rest of my life but I fear that is what will happen.

How long have you had yours? Has it gotten better? What things have you tried? What things work and what things dont?

Take care and have a wonderful evening.
BpCookie
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Post  mmorgan Thu Jan 26, 2012 4:42 pm

That's the common link to most V suffers, is thinking they are having a YI when this all starts.

Is there skin inflammation? I know you said you have Lichens. Everyone's V is different, yours is completely different than mine but we are both are experiencing the 'burn'. My one year 'anniversary' with V is in May I believe, at the beginning of this it felt like someone had a lighter to my vulva but I just let my body heal and stop taking birth control and my pain decreased dramatically to about a 2-3. My pain isn't constant, it randomly comes and goes throughout the day. Before finding out I was pregnant I was being rx'ed Amtrip. but I never started taking it which I'm glad now since you can't take it during pregnancy. So really I havn't done any treatments. :/

I would read and post around the boards.

Have you got your Pelvic Floor, checked out? Are you able to have sex at all, use tampons? I've read on here that a theory is that the pelvic floor is so tight that it's not allowing enough blood flow to the vulva which is causing symptoms.
mmorgan
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Post  BpCookie Thu Jan 26, 2012 5:27 pm

Yup, I have the skin inflammation, its red, burns like the dickens and the burning spreads every where. My guess is that the LSC is only in a small area the size of a dime but the nerves make it feel like its the size of a dollar bill.

I have had my pelvic floor checked and my gyno said that its too tight on one side. She sent me to a pelvic therapist but I found out that my useless ins. wont cover the cost. I have a feeling that the floor is also starting to drop a bit. I used to have sex and it would burn but I would just grit my teeth and bare it. Then for days after, I would have to suffer for it. But now I cant have sex at all. Sex feels like a knife is slicing me open on the inside and outside. So I dont even dare to have sex. Its totally out of the question. It really depresses me cause I feel like the closeness between me and my hubby is gone. Also, since Im perimenopausal I dont have to worry about having my monthly.
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Post  mmorgan Thu Jan 26, 2012 6:06 pm

I'm so sorry. Your story sounds like many around here and I'm definitely thinking that getting that pelvic floor worked on would cause some sort of relief but your floor could be triggering the LS or the LS could be triggering the floor.

As for the sex part, you could do other forms of "love-making" it doesn't have to be PIV. Just cuddling, kissing, oral, touching, hand-jobs, etc could bring you the 'closer' feeling. There are many women on this board who can not have PIV sex but we aren't just limited to PIV there are many other ways to express your love. If it hurts don't continue because it will just cause your floor to tense up more which equals a higher pain level.

Just think positive. Is your husband supportive?
mmorgan
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Post  BpCookie Thu Jan 26, 2012 6:33 pm

Yea, me and hubby are doing the hand job thingy, oral, but he is the only one who is getting the benefit out of this. He cant do oral on me because it causes pain. My hubby is very supportive. Im a lucky woman in that sense. Its just so hard. I want it to be like it was before all of this happened. We used to make love 3 times a week and now we dont do it at all.

Thanks for all your understanding and support
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Post  Sarah001 Thu Jan 26, 2012 8:16 pm

Hi BpCookie, welcome to our forum. I am indeed going to chime in and as you mentioned back pain plus a pelvic floor that's too tight on one side I really think you need your sacroiliac joints checking out plus some pelvic floor work. You can do bits yourself for your pelvic floor and if you haven't already read them I recommend Heal Pelvic Pain by Amy Stein and Ending Female Pain by Isa Herrera as good sources of information on self treatment. Your other half could also do a bit of massage in there for you too. It is possible for the pelvic floor to trap nerves whether it's tight and high or tight and low, it does need a more definite examination than just too tight though, if it's dropping as you said it could need to be relaxed through strengthening instead of massage but again it needs the attention of a women's health physio to give you a more accurate diagnosis. I've got severe SI problems along with PFD and V and today my WH Physio said 90% of women she sees with vulvar pain have some kind of SI problem that's causing it so definitely get it checked out. You can also check the inner thighs, glutes and piriformis for trigger points, a tennis ball will tell you if there's any in the buttock areas and just pressing into the inner thighs with your hands should tell you if there are knots in there, press them for 90 seconds then release and if the pain hasn't gone do more 90 second holds until it at least reduces.

Anyway, chime finished! Laughing I'm pooped after my physio work and in need of some red wine and relaxation.
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Post  BpCookie Fri Jan 27, 2012 12:22 am

Hello Sarah, Please forgive me if my writing is kinda erratic. I just took one of my meds for anxiety and it hit me hard. So my thinking process is a bit messed up right now. uuuggghhh

So is the Sacroiliac joints connected to the tail bone in any way? This is gonna sound dumb but can you explain what SI, PFD,WH? Your reply is very interesting and it has given me a lot of ideas. The pain that goes down my buttocks could be caused by trigger points. I knew that there had to be more to this than just LSC. My Dr. hasnt started looking out side the box, she is only focused on the bock itself (yea, pun intended). It would be so wonderful if we could all find out what the cause is and finally be rid of this?
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Post  Sarah001 Fri Jan 27, 2012 7:57 pm

WH - Women's Health
PFD - Pelvic Floor Dysfunction
SI - sacroiliac

The SI joints are at the back of the pelvis and the sacrum is a triangular shaped bone with the tailbone on the bottom and spine on the top and the SI joints are one each side where the pelvic crests attach to the sacrum. If you use a search engine with the phrase Sacroiliac pictures there are alot of very detailed pictures to look at. They often become misaligned in women because we have looser ligaments and less natural muscle tone than men. I've researched the connection between the SI joints and vulvar pain and there are absolutely loads of articles about the connection. Often a weak core makes the pelvis unstable and the pelvic floor goes into spasm to try and help but ends up tight, knotty and full of burning lactic acid because the muscles can no longer relax. The body often sends inflammation to the area to try and heal the problem but then the inflammation can't go anywhere because the muscles won't relax and allow proper blood flow, that in turn can also set nerves off. It's certainly an angle that needs considering especially if you already have back pain and have been told one side of the pelvic floor is tight. Your skin condition could also set the muscles off in a guarding way to try and avoid pain. My physio swears practically all the women she sees with vulvar pain have pelvic stability issues going on too.
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