Looooong week

It's been a while since I've logged on and read through this forum... I've had such a long week at work... totally stressed. Anyhow, on Friday... it was "casual" fridays at work and I decided that I'd wear jeans. Seriously, I don't know what I was thinking. Like Friday was goin to be different to any day. I've spent most of this year in leggings, skirts or dresses and yesterday I decided I wanted to wear jeans.
I felt the discomfort from the morning and it certainly didn't get better throughout the day. I just did my best to pull at my crotch every so often to loosen that area a bit. Sitting through long dull meetings was an arduous task. Gals, remind me me next time, never ever think about wearing jeans!

Has been a bit of a tough week. Randomly went out yesterday and bumped into a group of ppl that included old uni colleagues and also a girl who my ex is seeing... Like I seriously needed to know that. And of course she's gorgeous!

And as of today, I am now also the replacement bridesmaid for my friend's wedding next week.

Some days, I just wish I could live somewhere else just so that I didn't have to bump into familiar faces and have it rubbed in my face. I hate it. I hate that the ppl from my past get to move on just like that. They're so lucky.

Sorry, just a bit emotional this week. My PMS has dragged on for 2 weeks now and it won't end until my period comes. This whole week I felt like it was going to come because it's been feeling really sensitive and achey this week.

Yeh, that's my rant for the week. Hope next week is better =)

Sue

I did the same thing a couple of weeks ago, put a pair of jeans on for some bizarre reason and thought they'd be fine. They weren't fine, they were very uncomfortable and I won't be attempting them again any time soon either!

I really understand how you feel about everyone else getting to move on and basically have a life, I've had to spend the last 6 years watching all my friends get married, have kids, buy houses, get promoted etc while I hobble around the house like an old lady. It's really upsetting isn't it.

Hope you feel a bit better now you've got that off your chest.

Hope youre feeling a bit better Sue. Why do we do it? Sometimes I do things like wear stiff trousers, go for a bike ride, etc, because i start to convince myself its in my head- that all these things I avoid and that limit my enjoyment of life are all for nothing. Its very hard to persist in activities that are supposed to help with this condition when this condition has remained the same for four years and all my soap free washes, hypoallergenic toilet paper, detergent free underpant rinsing etc etc have not made a dint in the incessant pain. But then I make some change out of exasperation and have a serious flare up. sigh.

Hey ladies,

Damn this disorder sucks, huh? I'm sorry it's been rough for you this week Tweety. It's hard to believe, but things can and will get better. Damn tight pants...I have several nice work pants i can't wear because they are too tight in the crotch area. Sometimes i wear them and regret it. I do have a couple of jeans i can wear. they are not tight in the crotch. i am all too familiar w/ the tugging at the crotch area. I can't sit on a chair in a meeting unless i have my cushion. I carry a huge bag (it's cute) to my meetings. I pull out my pillow and sit on it. I try to avoid bringing it to shorter meetings. that helps me.

I have been in a rut for a good two weeks. I was doing well pain-wise, but i am now in a "flare-up" situation. I just got my period. I find that i have a lot of pain prior to getting my period (hormones?). but, i hold out hope because i have had long periods of relief as a result of my medication.

I feel sorry for myself too. why me? why do i have to live in pain and deal w/ this disorder? BUT, then i remember there are a lot of things that can help. It probably took me about 6 months to accept that I have to live w/ this disorder. Yesterday i was feeling sorry for myself. It gets old.

hopefully you have some support from friends/family. you know we totally understand what you are going through. get the help you need. i see a therapist. it helps a lot.

my heart goes out to all of you. it's not fair! but..there is hope. we can keep on trying new treatments/physical therapy/acupuncture whatever is out there. I found relief for awhile. so, i know it it out there.

take care!!!

jules

Hey gals,

Thanx for responding... I've gotten over my rough patch. I think I'm starting to accept having this condition a little more lately.

In the meantime, I need to start working out at the gym again because unfortunately some of my work pants feel a little more snug than usual. I've been avoiding gym the past couple of weeks because I've found that I couldn't use the treadmill for more than 5 minutes before I started feeling stabbing pains.

Jules - for some reason my period pain this time round was a little more intense than usual. My PMS lasted 2 wks - so I was emotional, bloated, feeling fat and sore for longer than usual.

I think it's also cos I've just been so busy at work too. Need to find more time to relax. Other than that, I just need to find more time to do my physio too.

aaargghhh!

*BIG BEAR HUGZ*

Sue

Hey Sue, glad you are feeling better. It is amazing that you say the same words that i am thinking. I have struggled big time w/ my inability to work out at the gym. Prior to having this disorder, i worked out at the gym 5 days a week. I was in great shape and felt great about myself. now, when i work out, i am in pain for days. i can feel the burning after about 15 mins. of cardio on a eliptical. my P.T told me to just do 10 mins of cardio, go do something else and then go back on again the eliptical(if i am not in pain). I did work w/ a personal trainer for awhile. we tried exercises i can do w/out sitting and w/out getting so hot or creating pressure in the pelvis. I've tried different things. But, it is frustrating. I too, am terribly busy at work. i work more hours than i am scheduled and get very stressed out. i am exhausted when i get home. but, i am pushing myself to go to the gym, because it reduces stress and makes me feel better. we just have to find diff. exercises we can do. this week i was in horrible pain as a result of working out. i am forcing myself to workout today, but will plan to do a light workout.

i wonder why we have so much pain prior to our periods...does anyone have an idea on that? have a great day. I love Saturdays!!!

I'd guess pain before a period is probably hormonal, I actually get worse during my period which I'm sure is period pains making me tense my pelvic floor even more and because blood is alkaline whereas the vaginal environment isn't (or shouldn't be!).

Have you tried pilates? I'm way too lazy to know a lot about exercise but I did do body balance for a few years which is yoga, tai chi and pilates. It's more working on your core strength with lovely relaxation at the end.

Of course I had to give that up when my food problems started. Roughly five years of not being able to keep food in before I lost over 20kgs in a couple of months and found out that was because I have coeliac disease and not because I'd given up drinking a glass of wine with dinner every night (because I got ratfaced).

Now that I have my diet sorted I'm still not sure if I can trust my digestion enough to try it again. It's a really lovely form of exercise though. It's hard enough to know you've done something without getting too hot and bothered. Even the fitness freaks I worked with loved it and most of them still go.

Hmmm and pain with your period, very topical in my house this week! My husband was too scared to talk for days. In fact I told him not too on a couple of times. He's way too happy in the mornings. Hahhaa I said one day "I'm really not liking you today, you're going to have to shut up" he knows that's my polite was of saying STFU and that I really don't mean it or I would have said STFU. It's the f$%*@n hormones. My original gynaecologist said I was experiencing this pain as a normal part of menopause - unique since I'm not menopausal and I would seriously doubt chronic pain is part of menopause anyway. Dopey cow!

Mouse, you're funny! I just snap at my husband and he knows to stay away. Our poor husbands. I tried pilates one time. i was in so much pain that night (prior to the pilates class) so i thought i would try something different. i enjoyed it, but that was the last time i went. i don't feel like i am doing anything if i am not getting my heart rate up. i plan to start back again. but, i just joined a fit club. i will be working out w/ about 5 women and a trainer. we can all work at our own paces. we use balls, weights etc. i won't be running around the gym getting my heart rate up. we'll see how it goes. if i decided it's not for me, i think i will try the pilates again. it's offered at my gym 4 nights a week. mouse, i'm going to look up your eating disorder. i haven't heard of it. what a horrible thing to go through. how long have you had Vulvodynia?

Hey Jules, certainly give the pilates a crack I've heard low impact can be pretty beneficial.

I've "only" had the vulvodynia since I had surgery on my girl bits in February. It's been a progression of shite health with the CD last year and then 2 massive bartholins abscesses (look those up but make sure you're not eating) popped up New Years eve. I had surgery on those and have had pain in various forms ever since. CD is the crappiest (pun intended)thing out, it makes eating a spectator sport. I've lost count of the times I've had to watch people eat and exclaim loudly about how lovely cake is. Gggrrrr!!! I'm doing pretty well though, dinner is the easiest meal and I have some great restaurants locally who know me well and feed me awesome food. Lunch is the biggest drama, cafes don't seem to get that GF is not vegetarian. They tend to combine the two options with the "choice" being a stuffed vegetable or a flaming salad. I'm going to write a recipe book called "stick your salad up your ass". Salad is a side dish and certainly not what I want to eat every day. The caterers at my office stare blankly at me every day when I say what's GF, it's like groundhog day. Coeliac Disease (or celiac for you) is auto immune so the body attacks it's own tissue in response to the enemy (gluten). It's multi system so undiagnosed it's pretty dangerous. And the average time for diagnosis because it presents in so many forms is 13 years! So I was pretty lucky really!

My second favourite disease(vulvodynia)is the generalised unprovoked variety.. so constant pain with varying degrees of intensity. Yay! It seems to be settling though and forming a cyclic pattern. I got really hopeful a few weeks back when my resting pain level dropped then I got slammed when I got my period. gggrrrrr If you didn't laugh you'd go on a rampage!

One thing I'll say about Pilates is if you have any pelvic floor dysfunction don't do it. Pilates increases the strength of the pelvic floor so if you have a high resting tone it will make you worse. My WH Physio thinks that the pilates style exercises I've been doing for my hypermobility are likely the cause of my pelvic floor problems so it's a big no for anyone with a high resting tone.

I don't know why the drugs give us dry mouths, that's my biggest side effect from the Ami so if I get given gabapentin as well I'm going to be really parched!

Mouse I read an article recently about women with CD and vulvodynia, it's apparently quite a common duo for some reason. I also have fibromyalgia and it's more common in women with fibro too for some reason.

Owww Sarah do you have that article? Is that by Christine Costello? I found this article on my old friend Dr Google but didn't have access to the website. I would love to read it, I mentioned it to my real life doc but she didn't take the bait.

Well if pilates is no good I've got nothing, that's the limit of my fitness knowledge. I live by the sea and there's a fabulous coastal walkway which goes right across the city I believe, I'm going to take my dog there one day. I usually get as far as the coffee caravan (see the pattern) which is just at the end of my street. I live in paradise. It's spring here, there's something in the air!

The dry mouth could still be a hangover from the ami (or a hangover from my birthday hangover). I only switched on Thursday. I had my first crap nights sleep last night, the only good thing about ami was sleeping like a baby - well beautiful babies like mine, they don't sleep through the night now they are big people.

I didn't make a note of the article, sorry. If you google CD and vulvodynia together though it should be in the results. I came across it by accident but can't recall what I searched for.

I've been on Ami for over 3 months and I still have a dry mouth every day, it's one of the side effects of lots of tablets that doesn't go away over time. I sip water all day long or suck sugar free sweets to keep it to a minimum. I wouldn't mind if it meant I couldn't feel pain but I still can! I sleep pretty well on Ami too, one of the symptoms of Fibromyalgia is non refreshing sleep so it makes a change for me to sleep and feel like I've actually slept instead of waking up just as exhausted as I was when I went to bed!

If your pelvic floor is ok then pilates is too, it's just pelvic floor dysfunction is something that is so common with vulvar problems that it's worth getting it checked before you launch into exercises that could make you worse, I'm living proof it can happen!

My pelvic floor received a standing ovation from my new improved specialist - crappiest one she's ever seen. Well that could be overstating it she did ohh and ahh a lot. My GP says there's no need to do anything but we'll see. I'm going back to the pain therapist tomorrow we both decided I graduated a bit prematurely and I have to resit (see what I did there).

Jules, have you already tried a personal trainer? And does your health insurance cover therapists? Mine doesn't and she costs a flaming fortune and it's a 6 hour round trip... she has been well worth it though puts this crazy shite into perspective. I mostly can't cross my legs these days so end up kicking off my shoes and getting comfy in a half lotus.

My insurance covers appointments w/ physical therapists at a clinic. I have to pay the copay (20.00) each time. My insurance does not cover a personal trainer at the gym. That's just something i did on my own to try to learn exercises that will help me tone my muscles. I bought 8 sessions. but, tonight i started my "fit" club. classes are offered at my gym (aerobics, pilates etc.) but, this is just 4 woman and myself..doing diff. exercises w/ a trainer. I did have a lot of burning tonight so, i obviously did too much. it's so damn discouraging. your insurance pays for flights? wow... yeah..keep me posted on your Gabepentin dosage. I had to increase mine this past week. so for me..200 mgs of Lyrica and 2700 mgs. Gabepentin. I had relief for weeks w/ a few tough days here and there. but, i've been having this damn flare up for about 2 weeks at least. It's all because i started working out again. I need to get my ass back to the physical therapist.

Spring time in New Zealand, I would love to see this. We did have a terrible summer and it is raining now for one week. New Zealand …. as I was a child (still I am for 95%) I figured out, that New Zealand is exactly on the opposite of Germany only 12700 km away if you take the short trip right to the earth.
Tomorrow is the Botoxday. We paid 360€ in the pharmacy and hard to believe, our health insurance made a mistake by accepting the bill. Normally due to the fact, that Botox treatment is not accepted and approved as a therapy, they refuse to pay. However I will not ask them what went wrong.
The Amitriptyline will be reduced now from 25 to 12 mg and than within the next two weeks to 0. By the way there were no side effects and a pain reduction reached an acceptable level, but not zero.
In two weeks we have one week holiday in Egypt. If this treatment is going to work we intent to have sexual activities like teenagers

Good luck with the botox and the holiday! My daughter (she lives in London) went to Eygpt in June, she had a fabulous time.

Spring in New Zealand is quite unsettled, lots of rain but that what makes the flowers grow. My husbands parents have a bed and breakfast and for the past 3 years have had a couple from Germany stay for around four months over summer. They love it.

I hope the ami reduction goes well.

Jules does it burn when you pee also? I saw on a vulvodynia group on FB that a low PH diet can help with that.

I've seen my pain therapist, she's all about reducing the stress in my life today. Oh and finding some emotions - apparently throwing them down a hole and burying them isn't recommended.. who knew? She thinks I'm almost autistic because I shrug everything off. I'm too tired for emotions most of the time.

Ha ha...you're probably not autistic, but you probably are able to disconnect yourself from your feelings for survival purposes. I'm so busy analyzing myself all the time that I am all well aware of my feelings. I'm all for stress reduction. Unfortunately i don't have the best job for it. My job is very high stress most, if not all of the time, that's why i joined a class at the gym. a fitness class that i can work out in at my own pace or ability based on my damn vulva.

I do not burn when i pee. that's never been a problem. the pain occurs when sitting, after workouts (even 15 mins of cardio), even after walks sometimes. But i remember back before the meds when i would burn all the time..sitting, laying, standing. this is much better.

today i took 4 Vicodin throughout the day. I'm only supposed to take 3 a day. I did take Oxy once in awhile, but ran out of it. (it was left overs from a family member who had it for something else).

oh..my stress reduction involves beer and sweet martinis (Cosmos). it doesn't take away the pain, but it sure makes me feel good

Yeah I'm all for cosmos as well. I discovered a drink in Texas years ago called a swamp thaaannnnng that would make anything feel better. It's kind of a muddy margarita so you could slug one back and then tip one down your pants and have another .....owww all that crushed ice.......... win/win!

Now this is a true story. I've been saying for ages that I hardly drink anymore but seem to be constantly drunk??? My therapist suggested (by hand signals) that drinking could be how I handle stress...!!! I had to laugh (remember laughing? I'm going to do more of that) because I NEVER drink unless I'm out. I have zero tolerance because of the CD so get drunk in a heartbeat. Honestly.

Now this is one of the reasons "my problem" came up. I see a dietitian for the CD and have to do a food diary on account of defying the odds and becoming a chubby coeliac. We just had a few days away with dinners out and lunches with old friends. Even with cutting back to what I thought was an acceptable level I still counted 17 glasses of wine (didn't even count the cocktails)! She let me off because the ami messes up my metabolism anyway phewwww I have to go back next week, if I don't count my birthday where I got bladdered I should be ok

OMG! you guys are such a crack up. I love reading all your responses to this thread.

I probably will stay away from pilates. As for the meds, I'm really feeling the side-effects at my current dosage 75mg. I've been using the Biotene oral gel for dry mouth. It does get rid of that odd feeling in the mouth - if you know what I'm talking about.

Is that ami? How do you find that? I was taking ami until last week but we had to break up... I really, really couldn't tolerate it. It's 5.45am and I've been awake for nearly an hour after not getting to sleep until after midnight. The ONLY good thing I found with ami was sleeping like a baby, trouble was I never woke up during the day. I'm taking Gabapentin now and my goodness I was so happy at work yesterday I was beginning to wonder if I'm manic. I think my co-workers are as well. One of them said I was vile last week when really I lost the power of speech, they should take that as a postive!

Yes, mine is like ami... its called nortriptyline. At 75mg, I can really feel the drowsiness and the dry mouth. I was fine with 50mg... I find some days the drowsiness stays for the whole day so I'm starting to wonder whether my dosage should be lowered. Will see my dr this week, so will see what she says.

Sue

Tweety, maybe trying something else might help? I've found the Gabapentin to have almost zero side effects. I don't sleep as well BUT I am awake during the day. Which is really helpful!