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» Hope to all my suffering ladies
I'm about to lose my best friend EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I'm about to lose my best friend EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I'm about to lose my best friend EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I'm about to lose my best friend EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm about to lose my best friend EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm about to lose my best friend EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm about to lose my best friend EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm about to lose my best friend 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!
I'm about to lose my best friend 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.

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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 …

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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- …

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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 …

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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 …

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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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I'm about to lose my best friend

+8
noni
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Mouse
Sebby (Admin)
gem123
naomi
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Post  flashlight Sun Mar 27, 2011 2:50 pm

I've had vulvadynia for 20 years. I have been with a wonderful man for 6, but he's at his breaking point. I can't have sex and have zero desire, and he's ready to leave me as he can't take it anymore. He's a man and has desire. He wants to be intimate with me in a normal way with intercourse and kissing and hugging and I couldn't want anything less. I want that in my brain, but the pain is so bad that I have been conditioned to have no desire for it. I don't know what else to do. I could try, but I don't think I could survive 2 days in a row. My vulva is already so red and painful. I do not want this illness to take away my life any more. I think I have tried every treatment, but I'm sure I haven't. I have so many other health problems that I can't focus on this one all the time. I just think nothing works, so why waste my time reading and hoping.

How do all of you keep your men happy if you can't have sex either. Hands and lips only go so far so please don't suggest those as viable options. It seems it intercourse or nothing at this point.

Thanks.

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Post  naomi Sun Mar 27, 2011 9:34 pm

well i found bumlove was the saviour to my relationship (before i woke up to the fact that he was in fact, a tosser!). Only once a week or so but it saved it!

im with a new guy now and it takes me about a good hour of hugs and cuddles before im in the mood...id rather settle down with a chinese, dvd (whilst doing some cross stitch) and an early night...but i would guess that not every red blooded male would gain much from that...apart from an expanding waist and square eyes from too much telly Smile

Have u considered speaking to a counsellor? i had to sort my head out before i was ready to start kissing/cuddling/bum the boys again. Im not sorted still (and my vulvar vestibulitus hasnt got any better at all) but im in a better head space at the moment (touch wood).

Can you set up a contract verbally? like making him agree to things like massage etc but with the guarentee of nothing more physical?
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Post  gem123 Sun Mar 27, 2011 9:44 pm

hey hun i know how u feel i have had v for 6 years now and with my partner for 7 ish. i often feel like you too i freeze up even if he comes in for a cuddle, let alone anyone else we tried to do it a lot at first but when he had finnished i would just ended up sobbing and then he would feel guilty and cry too Sad so we just do foreplay now lots of oral this is the main on he bends over me and we pleasure each other at the same time so blow jobs defiantly help on keeping him happy "gosh im blushing" lol cuddling kissing etc and he says now that sex's a bonus but only you know what its like being in this relationship i hope u sort it out and you become stronger by whatever outcome hope this helps Smile

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Post  Sebby (Admin) Sun Mar 27, 2011 9:54 pm

Firstly welcome Flashlight to the forum and I hope we can be of support to you.

I am not currently in a relationship but I have had Vulvar Vestibulitis since I was a teenager so intercourse has always been painful for me. Sometimes very and sometimes just a bit so I could do it. It varied.

The only relationship that ended in part because of the sexual problems was with my then fiance a good few years ago now. So I will be using this one as an example

Firstly you say you could try but would not survive two days in a row. Do you mean that you would not be able to have intercourse two days in a row? forgive me if i have read into that wrong. If you did mean that then I would simply say you dont have to have sex every day! Most couples dont.

You also say it is intercourse or nothing and you also say your desire for anything has gone. I hope I have got this right? Are you currently engaging in frequent sexual activity that is not intercourse? I know you say that this are not viable options but Im just trying to get a better picture.

I am guessing by your post and by what I have experienced that your desire has got so low (at zero!) that you don't even want to kiss and cuddle as the fear that he will want this to lead to more (intercourse) is so great?

This is what was happening when I was with my fiance. and you know what it was not the lack of intercourse that drove a wedge between us it was a lack of anything! He wanted to feel desired by me and he didnt.

If you are not doing anything sexual on a regular basis, even kissing hugging etc then this is the first place to start. You need to get your desire back. If you can get aroused then it is easier to achive intercourse when you feel able as the blood flow to the vagina helps the lips to open up and you are lubricated.

Have you thought about seeing a sex therapist together? They too would most likely start you on the outercousre first as I dont think throwing yourself into intercourse will be productive.

Are you able to masterbate? I would also recommend this (on your own) in order to regain your sexual self and get the blood flowing to the vulvar. Also this helps to condition the brain to not just see the vulvar as an area of pain but also of pleasure!

As for treatments what ones have you tried? A few of our members are dealing with multiple health problems as well as V. Coinside your sexual healing with physical healing as well.

Take care and always come on here if you need to off load. We are here for you

We also have a secret facebook group if you wish to join. Nothing shows on your profile and your other friends will not know that you are a member. If you are interested inbox or email me





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Post  Mouse Sun Mar 27, 2011 11:40 pm

Hi Flashlight and welcome!

I'll jump right in with the sex therapist advice. Sebby is right (about most things =) you need to get your sexual self back. I know that's probably the last thing on your mind! You are never going to comfortable having sex if you don't really want too.

If there was a magic pill to save a relationship we'd take it in a flash but it's usually down to good old communication. Therapy provides a safe environment to be heard and to set ground rules. I wouldn't be surprised if you start out with homework that focusses on reinstating non sexual intimacy. It also shows how the important the relationship is to you.

What have you tried so far to heal your V?

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Post  Joolibee Mon Mar 28, 2011 4:22 pm

Hi there, I don't know what you have tried so far, but you've suffered this problem for a long time. You say your man is your best friend. Would he be willing to engage in sex without intercourse. I have a wonderful partner, but it took me a long time to be completely open with him about my pain. At first I thought he would avoid sexual contact because he would not wish to hurt me, which was true to an extent. The problem was that I was making myself inaccessible and then thinking he had gone off me. How crazy was I? In the end, I knew that I had to make the first move. We had a long discussion, in which I told him I wanted to have sex, but was too scared of penetration. He actually thanked me and said he had wondered whether I had gone off him. Anyway, we have an agreement that we can have any sexual contact except penetration, with a view to reviewing the situation at a later date. This takes the pressure off both of us. I don't think we have quite got it right yet, but we have fun trying. At least we have regained the intimacy that is so important. Anyway, it seems that your relationship is worth fighting for. Others have already suggested sexual counselling - something that I would not have considered in the past, but I would agree that this could be worth a try. Good luck Smile

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Post  flashlight Wed Mar 30, 2011 4:01 am

Thanks, ladies.

I have tried elavil, pamelor, neurontin, steroids (oral and topical), biofeedback, antifungals, antibiotics, etc, etc...the only thing that helps at all is topical lidocaine.

After all of these years, we have tried everything sexually and we have talked till we're blue in the face. We both get it. It comes down to him wanting and needing intercourse to feel close to me. None of the "alternatives" cut it anymore. I have zero interest in any of it, but am willing to do other things...but, I am no Oscar winning actress, so he knows I am not into it. I have no libido and I have pain...great combination. I am perfectly thrilled to cuddle, but that just turns him on and frustrates him. It's just a rotten scenario.

If any of you have any other treatment suggestions, I am all ears. I have full body pain, not just vulvar. I have been to MANY docs at famous institutions and nobody has an answer. It may be Lyme Disease, or it may be something else. I also now have adenomyosis, which has made my pelvic life go from what I thought was as bad as it could get, to even worse.

Thanks.

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Post  rayofsunshine Wed Mar 30, 2011 4:19 am

I also have tried everything and still pain... when I met my boyfriend sex was not painful and then all of sudden pain, pain, pain. I have tried to talk to him but he seems to not understand. Our relationship is amazing except for this aspect. I try to other sexual thing with him but it just seems to make him want it more. I think he thinks its all in my head... I think he's going to propose soon.. what am i supposed to on that night.. just kiss him thank you. Feeling frustrated and don't have anyone to talk.

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Post  Mouse Wed Mar 30, 2011 5:27 am

Ok my lovelies you are never going to have sex without reclaiming your sexual self. If someone could pop that under the Christmas tree that would be amazing. Unfortunately it requires hard work, communication and yes, therapy. How you get the energy for that I don't know but I do know that therapy works for me. And so did the journey of self discovery Embarassed Dr Glazer believes that also encourages blood flow and therefore promotes healing

I think it's down to finding someone with knowledge in sexual issues. Working out a plan, finding what you are comfortable with doing and communicating that to your partner or make the plan together.

Sex becomes boring when you are "normal", sorry I don't know how else to describe the other folk. Spicing things up is essential for maintaining any sexual relationship, it's understandable that you are bored with doing the same things. Check out www.dodsonandross.com, you can ask questions as well and Dr Betty has some great advice. It's a mainstream site so don't be put off.

I think your partner will appreciate having something to work on, rather than knowing you are in pain and feel guilty about it. Let yourself off the hook, this isn't your fault. Get your heads together and make an action plan. Check out the links for othercourse and non penetrative sex. I posted some links on the FB group and I think Sebby has posted some here. There are a number of books available as well. Hmmm ok I'll have a hunt =)

http://www.a-womans-touch.com/sex_counselor.php?articleID=3071

There are books listed down the bottom.

Little ray of sunshine if he's going to propose, sex isn't the only thing he likes. He obviously loves you. Give yourself a break hon.

It's well known I'm pretty keen on diet modification. I think the cure is in our hands and changing the things you have control over is a good place to start. Honestly if giving up sugar for 6 months was the answer ...........who wouldn't do it???? Maybe try to cut out acid foods, do the yeast diet if that's an issue, drinks loads of water, limit coffee and alcohol, do things you enjoy, reconnect with friends, do PT, meditate, have a massage, walk the dog in the sun (you can borrow mine), talk to people you really like... well do things that make you smile. And be kind to yourself, your body is having a crisis be gentle with it =) And come on here when you want to rant!

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Post  flashlight Wed Mar 30, 2011 2:04 pm

Rayofsunshine, I totally get it.

Mouse, I appreciate your sentiments, and if therapy and other techniques have helped you, I am truly thrilled for you. However, I don't think there is a one size fits all cure here. I saw H. Glazer PhD and his GYN MD partner shortly after being diagnosed. As other practitioners have done since, when his methods didn't work, oh well. It skews the numbers and challenges their theories when people don't get better with what they do. It must be the patient's fault, right?? I can be critical here because I have degrees in both psychology and medicine. These folks are my colleagues. They are not bad people, but they are human like everyone else. It's easy to want to believe that your life's work is truly the answer.

I don't have guilt. I have anger and sadness that this illness has been ravishing my body and stealing my life from me for nearly 2 decades. I could reclaim my sexual self IF i was healthy...if my hormone levels were normal, if I wasn't inflamed, exhausted, nauseous and unable to raise my heart rate without becoming lightheaded...if I could eat what I want without severe abdominal pain, if I could just be the me I used to be... While I know there are many outstanding men in this field, I sometimes feel that they just don't get it, because they can't...they do not have vulvas and many of them do not have men as romantic partners. As a doc, I can say that even I have changed over recent years, as I have had more symptoms and problems. I was sympathetic before, but now, I have a remarkable new understanding. There is just no way anyone can understand, for example, the pain of adenomyosis unless she has it. It truly defies imagination.

Mouse, are you saying that any one of those diets worked for you? I tried all of them, for as long as I could stand it and none changed my vulvar pain. I know I should drink more water, but I never feel thirsty and water just tastes lousy when not thirsty.

As for having "sex" without intercourse, as I have said, we've been there, done that. And, it is simply no longer appealing or enough. There is no equal to intercourse, and in my case, my partner's emotional needs include that. Sometimes, I would prefer just experiencing the pain hoping that maybe I would get turned on at some point, to taking him into my mouth, for example. When not in the mood, it's just gross and nauseating....and, not because he's not perfectly lovely. He is. But doing things like that also require one's brain and other parts to be in the mood to do it. Otherwise it is perfunctory and not pleasant, at least for me. I hear what you are saying about boredom...but, that's probably another discussion (ie, should humans be monogamous), right?!

Thanks for the forum to rant. I need to do that every now and again, and it's great to be someplace where people understand.

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Post  noni Fri Apr 01, 2011 12:26 am

As per flashlights post:

Flashlight,

I really appreciate your unique perspective!

From your vantage point, what is the deal with the medical community anyways? Do they just not care enough about the plight of womens vulvas? Or does it go deeper than that?

I dunno...just thinking out loud...

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Post  Sarah001 Fri Apr 01, 2011 1:09 am

Hi flashlight, I've actually kept out of this discussion so far because my partner of 13 years did dump me for someone else because the V was "one health problem too many" and he was exactly the same in needing intercourse to feel close and we did precisely the same things with trying other methods of satisfying him but it wasn't enough in the end. I felt the same way you do, I've got full body pain along with the V and my sex drive has vanished, you just can't reclaim your sexual self when everything hurts and the effort of just getting through the day is exhausting never mind anything else. Have you seen someone regarding your full body pain? Mine's a combination of Hypermobility Syndrome and Fibromyalgia, the beginning point of my problems was instability of the pelvic joints. Has anyone checked your pelvis for misalignment or asymmetry in the joints amount of stability? Bear with me, the pelvis can throw everything off and give full body pain because it's involved directly with so many muscles, not to mention creating leg length problems and transferring load from the upper and lower body. If you haven't had it checked it's an idea to get it done, it's well known cause of V. I'm assuming you've seen a Rheumatologist over the years to be checked for fibro? And tried Lyrica which is licensed for fibro and used in V?

I think the fact you have full body pain, and believe me I know how that feels, means something else is going on. Your adenomyosis should apparently go away once you hit menopause and have a decrease in oestrogen so would a progesterone only pill help at all? Has anyone at all had any ideas for your pain? Can you describe the pain and are there other symptoms?

Sex just isn't any fun when everything hurts, I don't mind admitting that since my partner left me I'm glad not to have that pressure anymore but I don't really encourage getting dumped either! I think perhaps some couples counselling might help, I thought about that with my now ex but obviously as he'd already been doing the deed elsewhere it wasn't worth the effort. I really understand though and pain everywhere is incredibly difficult to cope with as well as trying to fulfill all the expected roles each day.
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Post  flashlight Fri Apr 01, 2011 2:27 am

First, to Sarah...so sorry. As for my pain, mostly it just hurts if I am poked or if I bump into things. I am so tender everywhere. It started in my legs...them, after a UTI, it attacked my vulva...and, over the years, it has ascended to involve my abdomen and thorax. My arms are involved but only hurt with trauma to them, albeit minor. My worst pain is in the following order: vulva, thorax, legs...everywhere else. I have been to every type of doctor...several rheum, neuro, etc, etc. Yes, the adeno will go away with menopause, but if I ever can get better from all of this, I want to try to have a baby. I have never tried Lyrica, and if there is any evidence that it is helping people, I would consider trying it.

Noni, I think it is a combination of things. First, human research is very challenging. The approval and funding processes are arduous at best. The next thing is that we just don't have much of a clue. Third, most doctors really want to make people feel better, so even though we're pretty much clueless, we will try everything that makes sense, and some things that don't. If we think we're on to something (ie, somebody said it helped them), we will keep trying it. And, if we "thought of it first", we will want to will it to be THE answer...sometimes clouding our better sensibilities in realizing that if someone says it doesn't work, it's not her fault...it's that our "cure" really isn't a cure. Admitting defeat is tough. There is so much we don't know, and it takes a BIG doctor to admit that. And, it is hard to offer nothing to someone who is suffering, so many docs will write prescriptions that have very little chance of doing anything (ex...look at the overprescribing of antibiotics for every little sniffle, ear ache and sore throat...and, look at the resistance predicament we have created).

There are some wonderful researchers out there...and, I encourage all of you to sign yourselves up to be guinea pigs. I have done it, hoping for the best, but not getting anywhere but more disappointed. But, given the chance, I will do it again. The only way we can learn is to study truly ill people. I think we'll get to the answer someday...I'm just not sure it will be in the next 10-20 years. It took us long enough to get doctors to believe that the pain was real, especially for those whose vulvas appear normal at exam time. I will feel vindicated when the "were you abused as a child" question ceases to show up on surveys. Just because we are not bright enough to know what causes the problem does not mean that it stems from some sort of psychological trauma. Can you imagine that question on a survey of men with unexplained penis pain?

On behalf of my profession, I apologize to all of you who were disbelieved, marginalized, patronized and hurt by us in any way. It shouldn't be that way even once. We will get better...it just takes time.




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Post  Sarah001 Fri Apr 01, 2011 12:04 pm

Have you had a physio check your pelvis for alignment and stability? It can cause pain in all the areas you describe having it.
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Post  Sarah001 Fri Apr 01, 2011 12:06 pm

Oh forgot to say the Lyrica has been shown to help some people, Jules on here has had good results with it. I'm on it but not a high enough dose yet and Sebby is also trying it right now too. Might be worth a shot if you haven't tried it, obviously what works for one person may not work for you so the only way of finding out is to try it.
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Post  flashlight Fri Apr 01, 2011 2:12 pm

I have't been to physical therapy, as it is not easy to find someone in my area who has any experience with gyn pelvic stuff. I have been assessed by Dr. Glazer and another doctor with regards to pelvic floor muscle tone. I have also been assessed by many outstanding osteopathic docs without any major red flags being raised. I am the lest flexible person on earth, so hypermobility definitely isn't it Wink. What do the physios do where you are? How do they assess and treat?

Does the Lyrica make the redness go away? What kind of body pain do you have? Is it like mine...painful to pointed touch or anything more than minor pressure?

Thanks!

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Post  Sarah001 Sat Apr 02, 2011 2:38 am

I think PT is your next option then, you only need one who understands SI joints to assess your pelvic alignment and stability and you don't have to be hypermobile to have a loose SI joint, in fact usually people have one looser than the other (I have) and that's where the problems start. Your hips and back also need testing, as does your posture, flexibility, balance of muscles all around the pelvis and even your feet need checking. Just ring a few and ask how much they've done with SI joints and you'll find one who has treated them, not all are equal in that respect though, it's alot like V for how much they know. The books Heal Pelvic Pain by Amy Stein and Ending Female Pain by Isa Herrera are based around the idea it's a pelvic girdle problem and not just localised to the vulva. Definitely worth a try and having your pelvic floor tested isn't all that's needed. Pelvic misalignment can be subtle so it wouldn't show much on X-rays or MRI scans and don't rely on doctors to spot it, I've seen so many over the years and even though I could even see it on my X-rays they insisted it wasn't there, as I said befor it's alot like V for doctors disregarding it. It may not be misalignment either, could be some faulty load transfer or not enough movement that's the problem which is why a PT is the best option.

My pain is constant and there whether I'm touched or not as mine stems from joints that constantly move too far and acquire injuries every day, however if I press any area on my body it's very tender and sore because all my muscles are dysfunctional from supporting my joints (or trying to) where my ligaments have failed. Your muscles could have lots of trigger points which makes touching them hurt and if you're not very flexible that supports the theory.

The Lyrica doesn't take away the redness it works on the pain but you know how it is with the inflammation part, some say it's nerves in which case breaking the pain loop should help them heal and get rid of the redness and others say it's muscular and a lack of blood flow to the area which fits into the PT method and again not just pelvic floor tightness either. How did you get on when you had your PF tested? What were the findings?
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Post  flashlight Tue Apr 12, 2011 1:12 am

well, it was painful to be examined, of course, and all my muscles feel tight, so those didn't seem to be an exception...though about 5 years ago, when I was in a clinical trial, that doc said they didn't feel too bad, but one side was tighter than the other. What does PT actually do? Do they stretch you? Make you do exercises? What kinds? I have always been so curious about this kind of PT. Thanks.

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Post  lisa98 Tue Apr 12, 2011 11:12 am

Flashlight, heres my two cents on your dilemma-
It sounds like you are grieving the loss of sex. You probably won't always feel this way, even if you never get penetrative sex back- perhaps by allowing yourself to accept the loss will help you to move on and focus on healing all your pain (once you have done that the possibility of regaining sexual function might reappear). I don't think it necessarily follows from the loss of penetrative sex that your relationship dissolves. Perhaps when you come to terms with the grief over this loss, you will be able to enjoy other forms of sex. This may not be quite as satisfying, but as mouse pointed out, sex can get boring for all long term monogamous couples. There is so much more that a relationship offers that makes up for a lack of ideal sex. So maybe if you accept that you need time to grieve and will need to rebuild an interest in sex, you and your partner may have a chance to reconnect.

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Post  Sarah001 Tue Apr 12, 2011 12:20 pm

One side being tighter than the other in the pelvis will cause problems, unlike knees and shoulders etc that don't have a direct effect on the other of the pair the two sides of the pelvis have to work closely together so affect each other alot. What they do to treat it is very individual and depends what they find, I have to stretch one side and strengthen the other but even on my weak side there are a couple of muscles that have to be stretched so a detailed examination of everything around the pelvis will give you an exercise routine tailored to you.
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Post  flashlight Tue Apr 12, 2011 6:37 pm

Thanks for the replies.
I appreciate them all.
Perhaps because I am a doctor, with a degree in psychology as well, I am quite clinical and critical of psychological explanations for any of this. I am not grieving the loss of intercourse for me...I could not care any less about it. I have no desire, don't miss it and don't want it...for myself. However, I am angry that I cannot be for my man what he wants and needs. It would be great if I could enjoy it, don't get me wrong, but I am not even thinking of it due to low libido. I have no emotional care in the world about my lack of sex due to my lack of sex drive. But, going fwd, even if I couldn't emotionally or sexually enjoy it like now, if it just didn't hurt, that would be plenty good enough, as I could help my man to enjoy his life with me more. Everything about us is great...it's just his lack of being able to make love to me...he's a very emotional man.

I have had constant discharge since this all started about 2 decades ago, redness, and occasional swelling. These are physical problems with a medical explanation, but nobody, including me, can come up with that explanation. All of the other forms of intimacy and sexual expression are fine, but they are not enough for my relationship. I can't blame him. In 6 years, we've probably had sex fewer than 50 times total. Most couples reach that milestone within 1 year or less. It's not normal and it shouldn't have to be this way. I refuse to accept this and will find an answer. If I give up the fight, then I know I will never be free of this disease. I have read about the theories that musculoskeletal problems can manifest in different pains, but discharge and redness? It seems not worth the time to go through PT, as I feel like it won;t be getting to the root cause of the illness. But, maybe I should try it if some of you have had good luck. I've tried most other things without help. I am just curious if PT can cure, do you have to do it forever, and what do you all do about the other issues, like discharge, skin irritation, etc?
Thanks.

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Post  lisa98 Wed Apr 13, 2011 12:04 am

We're all cynical, and I think your post about the human flaws in medical research explained very clearly why. But also, for the same reason, we are fumbling to try and put together our own theories about why we are experiencing what we are experiencing- for lack of an adequate professional medical explanation. My experience in my own relationship was of grief, and it helped me to let go of the possibility of sex and focus on other aspects of my relationship, life and my health. But my libido was still there buried under the pain and misery so I was able to find it again- this may not be the case for you, so if it wont help- dont give up the fight!
This condition is more of an umbrella term for the 'leftover' women who cant have their pain explained by any cause, so every woman's experience is different- in severity as well as well as type- and I get the impression that theres at least 10 underlying conditions that are swept under this diagnosis. The severity of my own pain is not as bad as many women here (I never have trouble sitting down, for example) and your own. Some women on here have talked about experiencing discharge and swelling also, Ive only experienced redness, and in the earlier years of my v, splitting skin and bleeding.
Current theories from my dermatologist and physiotherapist to explain the cause of my condition are (in my layman's understanding)- some kind of overactive immune response to the presence of the slightest traces of candida (all swab tests came back negative, but a serious, expensive test for candida DNA showed the little buggers were still in there)- the theory is this has settled down due to the hardcore antifungals I took for months, giving time for my body to get over this before coming into contact with candida again (which is apparently pretty much inevitable), and this is why I no longer experience visible signs of something going wrong and my skin seems fine. However, in response to the constant pain (and making it worse while the candida thing was happening) my pelvic floor went loco, tightening up in a ball of armour around my pain. This is how the drs are explaining the still-present burning and need-to-urinate feeling (still unable to have sex or ride a bike, but able to use tampons, wear pants, smile occasionally Smile ) So im having PT to loosen the muscles, doing lots of stretching, massaging, and when i feel up to it, internal trigger point massage. This seems to be improving things.
I don't know if anyone has experienced relief from pain that is also accompanied by visible symptoms such as discharge and swelling by doing PT alone. In my case, the physio is probably only good for dealing with the latter half of the pain spiral and the original cause needed to be dealt with. There is research currently under way into over-reacting immune responses to candida and vulvodynia, perhaps this may relate to you. Also, have you had your thyroid function and hormones tested? It would probably still be helpful to do physio while still seeking other help, if only as a harm minimisation strategy- to stop your pelvic floor from going any more bananas than it needs to. Definitely worth looking into.

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Post  lisa98 Wed Apr 13, 2011 12:17 am

Can't help but add to my already epic post: 20 years is a fucking long time, Flashlight. I can't even imagine.

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Post  Sarah001 Wed Apr 13, 2011 11:24 am

The theories about the red inflamed skin (I have it too) are multiple. I personally don't buy into the tiny bit of candida under the skin etc theory but we're all different and all have our own ideas on what might work. One theory is it's muscles pressing on nerves, a study done with rats where they irritated nerves that led to the vulva did produce red inflamed skin in the area. Another is that something sets the skin off then tight muscles prevent proper blood flow from letting it heal. Another is lack of oestrogen. There is a site called ww.vulvarvestibulitisrelief.com where a number of ladies have got rid of inflamed skin with PT so it can be done. Discharge could be related, any irritation in the vaginal area can create too much discharge and again on that site there are women who have both too much discharge and not enough like me. PT is something that's worth trying if you haven't tried it, there's nothing written in stone it will help but you won't know unless you try it. If you don't want to start with a therapist you could always invest in copies of Amy Stein's Heal Pelvic Pain and Ending Female Pain by Isa Herrera, they both mention inflamed skin being related to tight muscles in their books which came as a relief to me as I was like you and trying to imagine how the muscles could create the red sore skin but reading those helped me to accept it can happen. If you go to the vulvar vestibulitis site above look for the article on Physiotherapy in the article list, I think it might be the one called "to kegel or not" or something like that and the owner of the site is one of the women who has found PT to be helpful in getting rid of inflamed skin.

And some women have found once their muscles normalise and proper blood flow is restored using a steroid ointment gets rid of the inflammation that previously it didn't touch. I think probably the more we normalise the more chance we have to recover and any problems with muscles are a non-invasive way to begin. I'm currently doing a little bit of pelvic floor exercising and have multiple problems with the muscles around the pelvis which my physio is certain are the cause of my V. Side to side differences are very important to deal with and any tightness in the area will stress out certain joints more than others and create problems. As the nerves that are relevant are in the upper lumbar/lower thoracic area, in the pelvis itself and at the hip area it's necessary to look at the whole picture and not just at the vulva itself. At least if you don't fancy getting straight to work with a therapist you could have a read of the above books or visit the website to give yourself more info to work with.
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Post  flashlight Fri May 13, 2011 2:42 am

thanks very much for all of the information. I have to do something more. The pain is just ridiculous. I tried so hard to have sex tonight. I am now in so much pain...swollen and magenta red. It's just getting worse. And, you're right 20 years is a @~*^ing long time.

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