Vulvodynia Support
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» Hope to all my suffering ladies
Nine years of pain EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Nine years of pain EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Nine years of pain EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Nine years of pain EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Nine years of pain EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Nine years of pain EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Nine years of pain EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Nine years of pain 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!
Nine years of pain 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 …

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Nine years of pain

+3
jules
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Post  Guest Fri Jun 10, 2011 6:51 am

Hi , I am so glad I found this site. It is great to feel you are not alone. I have vulvodynia and have had it for about 9 years. I have tried Dermatologist (she made me feel it was in my head) and gynaecologist. My husband and I have come to the stage of marriage counselling. He has been a fantastic husband but can only put up with so much. We stopped having sex years ago, probably because it all became to hard. Looking back I think it started (if it is a nerve thing) when we picked up our adopted son from India. We had to carry him around everywhere and I found myself become very week from the hips down to the feet when putting him down or picking him up. Maybe some nerves were damaged. Our marriage counseller is versed in vulvodynia and has lots of contacts for me to look into. For the first time maybe I can get some relief. I only have pain with penetration and pap smears. I hope she will be able to help us because I don't want to lose my husband and want to get the intimacy back with my husband. [b]
Jewelsistas :

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Post  Sebby (Admin) Fri Jun 10, 2011 7:28 am


Welcome to the forum

Hope you can find the support and advice you need here Smile

Sorry its such a quick welcome reply...I gotta rush to work...speak more soon

Sebby (Admin)
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Post  Aussie Mon Jun 13, 2011 11:44 pm

Hi Jules,

welcome to the forum. You will find bucket loads of info and support on here. Sorry to hear of your 9 year struggles so far. I noticed you are in SA. Have you been in contact with Marek? www.vulvodynia.com.au the case studys there should give you some hope.

xx

Aussie

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Location : Queensland, Australia

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Post  Guest Tue Jun 14, 2011 5:16 am

Thank you so much Aussie. Will be reading with serious interest.
Thanks again.
Jewelsistas

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Post  jules Fri Jun 17, 2011 4:33 am

Welcome Jewel, sorry you have had a tough time. You're in the right place. I have been married for 21.5 years. I have had V for 2 years. It does put a strain on the relationship. My husband is very supportive. But, i do not want to be intimate ever. I see a therapist and he chooses not to (refuses). We are doing better than we were..in my opinion. He is very content in the relationship as long as he gets some type of sex once in a while...does not have to be intercourse. I could live w/out that forever...that may become a problem down the road. ha ha! I pop in and out of this forum. These women are a wealth of info. I'm sure you are too. Feel free to share what has worked and not worked,

jules

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Post  Guest Thu Jun 23, 2011 4:52 am

Hi Jules,
Well I have decided to get more proactive about this condition. I have been in denial for some time and my marriage is suffering. I went to our marriage counseller today on my own. I have to face facts my husband is nearly ready to walk out. I know it takes two. He has got a lot of faults when it comes to communication etc. but I have a double whammy. I was sexually abused as a child and wonder if this has contributed to the fear of sex and caused this condtion to evolve. He has one foot ready to leave the marriage according to her. I am so fearful of being left. He has a chance of meeting someone new and having a great life. What about me. Who will put up with my sexual abuse hangover and vulvodynia. I am crying at this moment. She keeps saying not to blame myself, but how can I not. He wants sex and I'm not able to give him what he wants. He is not a very inventive lover, so he can't see any alternatives.
It is good to have this forum to talk to as I don't want to burden friends as they wouldn't understand this like everyone on this forum does. Sad

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Post  Mouse Thu Jun 23, 2011 10:33 am

Hey there, does your husband know about your history? Mine story is fairly similar. I've only faced up to it recently and I've now told my husband. It changes a lot. I thought once I got it out it would make everything ok. Well I think it's more of a process. I just got angry with everyone. I still can't face my family and I'm pissed off that I've taken it into every relationship. I'm really angry that I've lived this half life with no sexuality.

I don't think it caused my vulvodynia though but I found once I had V. I couldn't hold onto all my secrets. Telling my husband explained a lot to him. We don't go to therapy together because I don't want to but I think that could be really helpful to you. The abuse wasn't my fault I was a child, you know it wasn't yours. Reclaim your life hon. Go to therapy with him and work on finding some alternatives.

xx.

Mouse

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Post  Zazu Thu Jun 23, 2011 6:07 pm

Hey there,
I just wanted to say that it's such an important step that you both took to find a counselor together. My partner and I are also seeing one. We went for 'sex therapy' but it's ended up being more about the dynamics of our relationship and after about six months we're only now getting to the 'sex'part. Our therapist helped us see v. as a challenge that, if we can work through it, will help us work through those childhood hangovers as well. My advice would be to continuing seeing the counselor together but find your own therapist, too. It sounds like a lot, but I think if you show that commitment to your relationship to work through your own struggles, it will mean a lot to your partner. The other thing you might want to consider is seeing a couples therapist who also does sex therapy (I don't know if yours does or not), but that might help you both start sharing intimacy sooner, while you continue to work on your relationship.
I don't mean to do things you aren't comfortable with, but to start exploring things that feel good in a safe space, guided by therapy.
There's a really good author called David Schnarch who has two books that might be helpful called The Passionate Marriage and Resurrecting Sex. Here's some info. Hope this is helpful:
In 1991, David wrote the landmark book, Constructing The Sexual Crucible: An Integration of Sexual and Marital Therapy (W. W. Norton & Co.), now used in clinical training programs across the country and read by therapists around the world. The Crucible Approach® is widely regarded as the most sophisticated integration of sexuality, intimacy, spirituality, personal development, and marital therapy developed to date. His second book, Passionate Marriage: Sex, Love, and Intimacy in Emotionally Committed Relationships (W. W. Norton & Co., March 1997, Owl Books, 1998), is a perennial best seller, offering the general public his revolutionary approach in a pragmatic and easy-to-understand form. His third book, Resurrecting Sex: Resolving Sexual Problems and Rejuvenating Your Relationship (HarperCollins, August, 2002), offers hope to millions of normal couples and singles who have sexual problems.

Zazu

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Post  Sarah001 Thu Jun 23, 2011 8:27 pm

I can completely empathise, my partner of 13 years left me about 6 months into my V problems because it was "one health problem too many" as I have other painful problems, he also threw it in my face during an argument that I have too much baggage and it made him want to leave me before the V but the V was the final nail in the coffin. My "baggage" is of an abuse kind too, I had a man attempt to abuse me when I was 12 and I managed to escape the situation and did what we're always told to and told a responsible adult. The adult knew I was telling the truth but then had her mind changed by the predator and didn't remove this man from my life so he relentlessly bullied me for years after for being brave enough to tell the truth. It led to me not trusting anyone, not being very sexual and feeling totally destroyed that it had been allowed to happen even after asking for help (at 14 I was contemplating how to kill myself while my friends worried about boys, make up and school discos) and I'm pissed off that I carry that around with me all the time and do take it into relationships so I probably do have a bit of baggage! I can't offer much advice about therapy as I haven't had any despite probably needing some but what I can say is if he does leave you it isn't the end of the world, I thought it would be and was trying so hard not to get dumped but if it happens we carry on, we try and find an answer to our pain whether it's meds or physio or whatever it is and we move on. One positive thing for me is not having the constant pressure of sex, I couldn't manage sex then and can't now so not having someone always hovering around waiting for a hand job or a blow job or trying to make me have sex is actually very nice. I know it's not what you want to hear but if he leaves it isn't the end of your world, I'm living proof if a man leaves because of lack of sex it doesn't finish us girls off.
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Post  Guest Fri Jun 24, 2011 4:32 am

Thankyou for the lovely replies. I talked to him last night. He has really shut down. I have decided to be more affectionate towards him to bring him out of his depression he suffers because of this. I have also written a letter to him, even though I have this condition, I have needs and I need for him to start treating me like a wife not a mother/cleaner/cook. It will be a slow process, but surely he can be inventive in the area of intimicy while I try and find a solution to my pain. I usually only kiss him when he leaves for work but I hugged him this morning. I think if one of us changes the other will follow. It was funny my son said how come you hugged daddy and I said why not. That is how unused my son is from seeing us affectionate to each other. I have also told him foreplay doesn't have to start in the bedroom. Saying nice things, hugs, a look all gives a partner some feeling of love and that is all we all want. We have another appointment next week, so see how we go. Will be a long process I think. And I appreciate the great replies from you all.
Jewelsistas

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Post  Mouse Fri Jun 24, 2011 4:45 am

You are right! Love is a doing word. I've just read a book called Staying in Love by Robyn Salisbury. She's a sex therapist and runs the practice I go to. There are some great ideas, she's incredibly intuitive. Some of the letters from her clients I could have written myself.

Keep up the good work love!

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Post  jules Sat Jun 25, 2011 12:39 am

So glad you are continuing on with the therapy. It's kind of strange for me to work on my marriage alone. Two years ago, i told my husband that i was confused about the marriage and not sure if i wanted to be married. A month later, my V started. I have had so many docs and psychologist ask me if anything was going on in my life before my pain started. Well, I had been unhappy for years. But, i think i finally realized it when i finished my master's program. I had escaped to the books for three years. Then i all of a sudden realized i wasn't happy. My husband begged me to stay, even though i never said i was leaving. he changed a lot and is a much kinder person. i started therapy over a year ago. he always refused in the past when i brought it up. he still has no interest because he doesn't believe in bringing outside people into his business, i guess. so...here i am going it alone. i am not feeling that way anymore. but, i recently realized that i have a lot of anger and resentment toward him. my therapist is helping me with my communication. she also wants to help me w/ intimacy. now, when i hear intimacy, i think of sex. apparently intimacy is only 15 % physical. i don't like to get close to him because i'm afraid he'll get turned on and want sex. sex is not always painful for me. but, i am totally not interested in sex. it's got to be my anti-depressants. it's also the fact that i have completely lost that spark. that happens after years of marriage and after years of anger and resentment. he's really a very supportive good guy. don't really know what i'm getting at, but it feels good to write it down. therapy can be very helpful, even if you go it alone. it's so nice to have someone give you feedback...someone who is nonjudgmental and objective. so glad your husband is willing to do the therapy. i totally understand your fear of losing your marriage. you can't control the decisions he makes. you can work on you and work on your marriage. men feel rejected when we don't want to get close. they take it personally, just like we would. it's not your fault either...it's no one's fault. communication is the key. talk, talk, talk! so glad you are reaching out w/ a hug. that can go a long way. we all need to feel needed and loved. when i show more affection to my husband, he seems to feel so much more secure in our relationship. Relationships take time and a lot of work. I met w/ a psychologist who deals w/ people w/ chronic pain. he talked about the pain and how it won't go away until we deal w/ all the other things in our lives causing stress....this will help your V too. good luck.

jules

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Post  CJ Sat Jun 25, 2011 3:00 am

Hi Jewelsistas,

This is CJ, my wife has been going thru vulvodynia, having pain since 1999. Any man that doesn't & won't except his wife medical problems and won't stay by her side to me isn't being fair, loving to his mate/partner/wife.

If you read the input I have put into this forum, you'll see that I feel the 1st & most important is my wifes health & mental attitude. She needs my support and I do everything I can to give it to her & be there for her.

Yes sex/intercourse is important in a relationship. But not if it hurts either person.
When we marry we're accepting our partner for life, and all that comes with it.

Do we ever disagree on things, of course don't most couples. But being there for a person we love is very very important.

I hope you find a cure for your v condition & I hope your husband learns to love you with out making you feel bad over your condition it's not your fault. It's just like heart trouble, kidney trouble, cancer. It's just a medical condition that can strikes anyone. Male or female. The Pudel nerve is in all or us.

Good Luck.

Sincerely,

CJ

CJ

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Post  Guest Thu Jun 30, 2011 2:10 am

Thanks so much for the replies.
We had a session with the marriage counseller today. I was so angry when I first went in. I feel like I am in limbo. Does he want to stay or go. He is a really bad communicator. She is a sexual counseller too. My next session on our own she will be giving me advice on therapies and people to see for vulvodynia. We got to a calm point (with her help) Even though vulvodynia is a crux in our marriage, my husband has a lot of changing to do. He is hooked on antidepressants, alcohol to a degree and is so closed emotionally. (maybe some of this is due to abscence of sex and has caused his depression) but if he communicated better maybe this wouldn't have come to a head. We are doing an intensive all day course this Saturday and next Saturday on communication in relationships. It is costing a fortune, but as she said if we both went to a lawyer, we'd be paying more for their fees just to write a letter. I would much rather spend the money on us trying to work things out. And CJ, wow what a supportive man you are to your wife. Good on you.
I hope we get through this and I am put onto the right people to fix my problem. Jewelsistas

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Post  CJ Thu Jun 30, 2011 2:36 am

Hi Jewelsistas,

Thanks for the nice comment about my being supportive to my wife.

Now to the subject of your therapy, whether with or with out you hubby, you need to remember, your condition is a health issue, not something that came up because you did anything incorrectly. I hope your hubby realizes it could of been him that had a health issue of some kind that would require your being understanding and supportive.

If he's going to hid in booze or drugs, even if a doctor prescribed them, it's not going to help him deal with things properly nor help you get the support you need. I hope for you both, the theraphy helps and you're able to work thru the lack of communication problem,
and begin to talk & have a healthy marriage. A healthy marriage w/o sex is very possible, esp. when it's due to a health issue. No woman should have to endure pain having
intercourse, just to satisfy her partner. I don't feel a woman having the v problem is in the mood to have any type of sexual activity when she's having burning etc. caused by her condition. I know my wife doesn't & I understand and respect that & her.

To me, a husband should help his wife find the best doctors possible that they can afford, and try to get the condition managed & if possible cured, so that she the wife
has her mind & body to enjoy again. That doesn't always include sexual activities again
because if the condition isn't cured but is just managed/surpressed, then it's not fair to
try & convince the woman to endanger her body/health.

If he's unwilling to talk this out, just continues boozing & taking pills. To me, if I were you
I'd ask myself am I better off with him or without him. Being happy alone is alot better than being misreble with someone.

Sorry if I wrote a book here.

Good luck & my wish for you is you find a cure & that you're marriage is saved if that's what you want.

Sincerely,

CJ

CJ

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