Does anyone else feel better in the mornings - after having been lying down all night?

I have noticed since reading about the chiropractor idea, that generally speaking, I feel a heck of a lot better when I first wake up in the mornings, and then as the day goes on and I am walking about or standing or even just sitting down all day, the pain gets worse and worse.

This is making me wonder if a pelvic mis-alignment might be a possibility?

And i wondered if this was generally the case with everyone or if it is just me.

Of course if you have provoked vulvodynia (like me) it could just be that nothing is provoking you as you sleep and then as you go about your day then clothes rubbing and friction etc sets it off.

I am just really hopeful that I have a pelvic misalignment and can be cured by a chiropractor like Ivyrose!

Hi I also find that I am better in the morning. Its wonderful to wake up and be comfortable, however once I am up and sit down for my breakfast off it goes again. I have been like this for two and a half years. I have been diagnosed as having vulvadynia and given Epaderm to shower with and gabapentin to take. I am currently on 1800mg a day but it isnt helping. Also prescribed Lidocaine but it burns so much. I really dont know where to turn to next but I hate having this. Is it me or does it affect everyone more when they sit? I cant go anywhere much in the car or to the cinema or even read a book in comfort. Sorry if I'm moaning but I get so fed up!!!!

Hi, I think I have developed Vulvdynia since a hysterectomy in January. My Gynecologist is sending me for an MRI scan to see if there are any compressed nerves in my back as he seems to think this is a possibility as I feel strong pulling sensations on the left side of my vulva which seem to move about, which I agree sounds nerve related. I hope they may be able to find out if this is the case, because as all you other poor ladies will know, it is a very distressing condition. I have been left devastated by the way I feel and have not had a life for the last 6 months. I will keep you all up to date with my progess, if any.

I purchased a memory foam cusion which helps when sitting in the car and on my dinning table chairs. Just thought this may of some help to know!!

Yes, I’m definitely better first thing in the morning, especially before I get up! Obviously I should just stay in bed…

Lily – it definitely affects me more when I sit – the posture puts pressure on the painful area which is not good. Like KathyH I also have a special cushion (2 actually), they are a godsend when sitting for long periods. It is still uncomfortable but way better than just a hard chair. This is what I have:

http://www.putnams.co.uk/sitting/bonyparts-sero-pressure-cushion

As for treatments, there are other meds to try – mainly amitriptyline and pregabalin (lyrica). The lyrica helps relieve some of my pain. Have you tried ice packs, too? Be careful the first time you use one and don’t leave them on for too long, though.

KathyH – Sorry to hear you seem to have developed vulvodynia. There is a wealth of info & support on this site. Do be aware that MRI scans aren’t conclusive for this as they don’t actually show nerves – what they may show are other things that could be pressing on nerves and causing pain. Me & my specialist think my pain has a definite nerve component and yet my MRI was normal. The way to tell seems to be through treatments i.e. nerve blocks, though they can also be tricky as my first one was fairly inconclusive. Do let us know how you get on, wishing you all the best.

Liz

In the morning when I first wake, my pain is much less. I always figured it was because I wasnt sitting and putting pressure on the area or doing all of those other wonderful things that cause pain. But Im also thinking that perhaps when I fall asleep all my muscles relax, so there for Im not tensing up because of the pain. *shrug*.

I have chronic back pain and I have learned that when a part of my back starts to hurt, the other muscles around the area will start to work harder which causes those muscle to hurt which in turn causes the muscles around that area to work harder and eventually my entire back kills me. So perhaps our vagina, vulva and buttox area react in the same way. Just a thought.

Butterfly, I have a question. You mentioned nerve blocks, what kind of nerve block have you received? I went to a nerve specialist to ask him about nerve blocks to help with the pain but he instantly threw the idea out and then told me that he couldnt help me. I even called my back pain specialist and asked him but he told me he only deals with backs, not vagina's. lol

Hey BPCookie,

Your theory about tense muscles causing surrounding muscles to hurt definitely sounds likely to me. Whenever I am bad with v, I have general achiness in my pelvic muscles and bones. It must all be related.

I had a bilateral pudendal nerve block, of a combination of anaesthetic & steroids. Basically they did one in each butt cheek and they were placed to be close to each branch of my pudendal nerve. They used my previous MRI scan + did X rays as they went along (all very sci-fi) to determine where to place them. It’s a pretty tricky procedure so you’d probably want someone with quite a lot of experience to do it, but they can definitely be done! I don’t have any info on success rates but know they work well for some.

Sorry I can’t give you any more help but I don’t know who would be best to see in the US. If you search around for “pudendal nerve block” you might find something? You could try the tipna.org forum which is specifically for peeps with pudendal neuralgia (just don’t get alarmed by some of the more severe stories on there).

Liz x

each morning i wake up and feel almost no pain, i think to myself maybe its a miracle and now the whole problem has disappeared the same way it just appeared in my life... but as i begin my day, little by little, i get that rude awakening that its here and it has gone no where. since dec 2011, this hell between my leg began and after countless trips to doctors and even 2 gyne, no one could give me an answer, only useless medication. i diagnosed myself when i looked on line and found so many women facing the same hell. only then i found out about this demon vulvodynia. 3 days ago, after waiting 4 months to see a vulvar specialist in toronto, he was the first one to announce the 'exciting' news. it is vulvodynia, there is no cure and i could only try medication to trick my brain...what hopelessness. i still cannot come to terms with this in my life though its been 6 months, i just can't imagine living like this forever.

Blessed, Im so sorry that your going through this, Im sorry that anyone has to go through this. Nobody can truly understand how horrible this is unless they have it. Ive had this for about 1 yr and 4 months and counting. At first it was just annoying and then it got increasingly worse. This pain took over my life. It told me when I could go out to the store, when I could sit at the computer (btw, I have marks on my knees from kneeling at the computer instead of sitting), when I could walk, when I could go outside, etc. I became very angry and very depressed. I cried and bawled all the time. Saw more gyno's and specialists than I can count. One day a nurses assistant gave me a prescription of Lyrica and OMG, what a relief. Its not perfect, I still have horrible days but I also have some days when I dont have any pain at all. On the good days I feel like running through the neighborhood nekkid screaming "MY BUSH DOESNT BURN!!!!". So I take Lyrica twice a day, use amytriptaline(sp) ointment(the ointment numbs the area" twice a day, A and D ointment ALL THE TIME, ice packs when needed and sometimes I throw in a Hydrocodone for good measure. I get a lot of bacterial and yeast infections that piss off my vulva. I noticed that when I take a YI medication even when I dont have a YI, it seems to help. If you havent tried any of the things I mentioned then give them a try. It cant hurt.

I really do fee for you and I know what your going through. Try to keep your head above water and hope in your mind. If you ever need support, then sent me a private msg with your email addy and I will email you.

Take care

hugs
Cookie

i feel better in the morning also. Sometimes in the middle of the night if I wake up, I find that I am not burning as well. However, I know that this was set off after a long antibiotic course and frequent yeast, and also that I respond to natural antifungals, so I know that it is not some alignment issue. I always thought that maybe since I was lying down, any "secretions" that may burn me stay "up there" maybe. And also, my mind is at rest, and the mind is such a powerful thing.

What do you all do between the time you wake up and the pain starts? Do you apply any meds to the area like Permarin Cream, Steroid Creams, Lidocaine? Do you use KY Jelly or KY Intense for sex? Get dressed in laundry washed in liquid detergent like Tide, Dreft, Gain, etc. Keep in mind that all of these contain Propylene Glycol and will set your vulva on fire. I discovered this last year...stopped the meds immediately ...washed my clothes in organic powder...and was better in 24-48 hours. I kept 'icing' the area and that's all.

BTW...how do you 'ice' the area. I was using ice in a cold rag and found that I was rubbing myself raw. I soon discovered that the best way to do this is to grab a coke or water bottle from the refrigerator, let is stand on the counter for 5 minutes, and then hold the can against the area. It feels wonderful and the smoothness of the can or bottle in non irritating. I actually fell asleep one night with it between my legs

I feel your pain and hope you all get better real soon.

Hi KathyH thanks for the tip about memory foam cushions. I have now got two. One in the car and one at home and it does help. I am more comfortable when sitting. However the burning and discomfort has not gone. I am now on 2100mg of Gabapentin and still no relief, I tried to get to 3600mg as the Dr prescribed but felt so unwell I had to drop back. Has anyone had success with these? I try so hard to remain positive but its been almost 3 yrs now and I want to be CURED!!!!!



Hi

KathyH wrote:Hi, I think I have developed Vulvdynia since a hysterectomy in January. My Gynecologist is sending me for an MRI scan to see if there are any compressed nerves in my back as he seems to think this is a possibility as I feel strong pulling sensations on the left side of my vulva which seem to move about, which I agree sounds nerve related. I hope they may be able to find out if this is the case, because as all you other poor ladies will know, it is a very distressing condition. I have been left devastated by the way I feel and have not had a life for the last 6 months. I will keep you all up to date with my progess, if any.

I purchased a memory foam cusion which helps when sitting in the car and on my dinning table chairs. Just thought this may of some help to know!!

Hi Lily, I tried Gabbapentine (sp) too but it didnt help at all. I was also put on Amitriptyline and that didnt work either. I was finally put on Lyrica 150 mgs three times a day and I find that this med. helps. I still have pain but some days arent as bad because of Lyrica. So you may want to give it a try.