Life turned upside down D:

So this is my story, I might not be able to include everything because so much has happened I can't remember it all, really wished I had kept a journal when it all started though :/ Anywho it all started about 2 years ago when I met my boyfriend when I was 21. ( I'm not sure what I would do without him) and I began getting recurring UTI's (usually after having sex) so I would go get antibiotics. After about 3-4 months they began becoming more yeast/bacterial infections and like others have said I was just be given antibiotics and pushed out the door. It started getting to a point where sex was unbearable and I could only have sex for a short period and would have to stop due to the pain. I also got really bad side pains on my left side and went to the ER twice and got a MRI scan, some drugs and pushed out the door ( I went to the ER again for a yeast infection because the clinics were closed on the weekend).

After the ER trip I was sent to get a colonoscopy. The logic behind that was my father had found out a year ago he had colon (and liver) cancer and he only had a year to live. So not only was I dealing with this problem, but knowing that I was loosing my father soon made my life a huge struggle. After the visit I checked out just fine and healthy and then was referred to an Urologist. From there I received a cystoscopy. They found nothing and gave me more drugs and antibiotics. So then I was passed around from one doctor to another (for months) being told I was just really stressed out and to eat healthy and exercise. Given pills that made my side hurt worse and made me more ill. Keep in mind that I was in constant vuvla pain and irritation (itching, burning, rawness) during this whole time. I had to take a break from doctors for about 3 months due to me moving an hour away to go back to school and I focused my time more with my family and dad, knowing my time was limited. Still in pain, I just try to adapt and stay positive. So recently I decided to look to the internet for help and support. I found sites talking about Vulvodynia and the symptoms seemed to be very similar to mine. So I wrote it down and saw two gynecologists, in which they just ignored it and told me I would be fine. It took the third gynecologist (third times a charm?) to actually listen and told me she will refer me to a vulva specialist at the end of the month if my pain is still worse (which of course all you ladies know, it never goes away) so I am hoping to be pointed in the right direction soon! Cross your fingers for me!

I know exactly how stressful it is to have a parent terminally ill, I lost my Mum 7 years ago to cancer and I can remember even now how totally stressful it was and how nothing seems to make sense during that time. I think stress can play a part in this, I was very stressed out right before my symptoms flared up and for me I'm sure it's because I don't eat very well when I'm stressed but also because I tend to clench the pelvic floor during stressful times so stress does seem to be relevant. It's hard to relax during very stressful periods though but you must try and spend a bit of time each day focusing on relaxing your muscles and trying to calm your mind.

Ellie,

I received the name and contact info. for an instructor at St. Cloud State who is willing to be a support to women w/ Vulvodynia. I received her name from the National Vulvodynia Association. I will look for her info. for you. I left you my e-mail address. you can e-mail me.

Jules

so sorry for both of you re: your parent's illnesses/death. That has got to be terribly difficult! You're in my thoughts!

crumbs Ellie! your symptoms and causes mirror mine!...shame we are all spaced out across the globe

My consultants recently left me on my own as they referred me to my local pain clinic and told me not to bother to search for cures......urrrrrrr NO! I dont think so sunshine!!! told me to live with it!!!

Thank you all for your kind words! Like I have said before I am so happy to have this place now to come chat with you ladies, even though I just started posting a few days ago, heh. It gives my boyfriend a break from me talking on and on about it.

And actually I first had a question for you all. Have any of you suffered side pain like I have? It is really sharp pain on my lower left side and I will get it off and on. It is worst when I get meds that don't agree with me. I stop most of them if I get the pain because it is just unbearable, to a point where I can't sleep at night. When I brought this up at the doctor, they said the pain is coming from stress, that's all. I'm sure that is part of it, but not completely. I'm thinking it has to do with all the antibiotics (along with other meds) I have taken the last 2 years. I was at a point were I was talking them every other week for awhile.

@Sarah: I am sorry to hear about your mum and it is nice to know your understanding. This past year has been the most stressful time in my life. If I can survive this, I think I can handle pretty much anything else that comes my way! I am hoping to relax soon when the holidays come, I am in finals week of college right now, so after this week of projects and stress I should be able to take a breather afterwards. I am hoping you are taking time to relax also, we all deserve it!

@naomi: That's terrible that they told you to not even bother! For heaven's sake, like we weren't already stress and discouraged! I have been told I'm just fine and then I loose it and start crying at the doctor's office. They then processed to tell me I'm just stressed due to my father having cancer and to just relax because I'm healthy. >.<

@jules: I got your message and I have sent you an e-mail! It is great to hear from another Minnesotan and somebody so close!

Hi Ellie

Glad they are going to refer you to a vulva clinic! I haven't had pain in my sides, just lower back which I believe is due to the funny ways I have to sit due to vulva pain!!

When you got the MRI on your side, what did it show? I take it, it didnt show anything?

Maybe an ultrasound would be better?

What is the pain like? and do you notice if it relates to you menstral cycle at all?

When you say in your side where exactly do you mean? I get pain in the appendix area but I know that's referred from the SI joint on that side and I get pain up near my lowest rib on the left side but that's the QL muscle on that side spasming and kicking off because of my unstable pelvis. It depends whereabouts the pain is really and if you feel anything when you press the area could tell us more.

When they took my MRI it looked healthy, they looked at my kidneys along with what's on that side. I have also gotten 3 ultrasounds throughout the year, but doctors say they find nothing. The pain is not in the back, but more in the front of the lower left side below my ribs. (does that make sense?) I find it strange that no one has found anything from all of those tests that have been done. I have constipation and was given meds (a powder) for it that and it does help. Sometimes I just worry about it. And also I do have severe Scoliosis (large curve in my spine) and I am constant pain, but over the years I have just adapted to it. I wore a brace in high school for awhile and now I see a chiropractor every other week. For only being 22 it is crazy to me how many medical issues can come about, but I guess it could always be worst.

And Sarah how did they find out about your SI joint? What tests were done? When doctors and myself pressed in certain areas on my lower left side it does hurt from just pressing on it. This pain comes and goes though.

In my opinion the pain in your side is coming from your scoliosis, in fact I'd bet your vulvar issues are too. If you have scoliosis of the spine it's going to affect your pelvis and the pelvic floor and muscles around the pelvis play a big part in vulvodynia. Have you asked the chiropractor about the pain in your side? It might be coming from a trigger point in one of your muscles and a decent chiro would know where to start looking. With scoliosis you'd have asymmetrical abdominal obliques and probably QL problems too so it could be one of those that's causing it.

I've got Hypermobility Syndrome so my loose SI joint is very obvious, when I stand on one leg it rotates out of position and doesn't lock like it should and it frequently misaligns and gives me a functional leg length discrepency. MRIs and the like won't be much use for musculoskeletal problems, I've had 3 and they didn't show any of my problems up, so again this is something your chiro should know about. If your chiro isn't looking at the whole picture things will get missed, have you considered seeing a physio instead? (PT if you're in the US) They tend to spend more time on soft tissue than chiros, at least they do here in the UK. Is your scoliosis structural or functional? I've got a functional rotoscoliosis which means my spine twists on the way up like an old fashioned barbers shop sign. I can remove it myself temporarily using a muscle energy technique but again my Hypermobility Syndrome means it comes right back.

I really think your vulvodynia is related to your scoliosis as it can't not have an effect on the entire body and the adaptions used eventually turn into what they call decompensations which means they work for a while then cause other problems.

So I took your advice Sarah and I went to see my chiro this past Monday. I asked her about my scoliosis and if it could be affecting my side and the pain in my vuvla. We came to the conclusion that the pain in my side is related to when I have my menstral cycle, but I'm not completely sure all the pain is, but I haven't been keeping track. She did recommend seeing a specialist about the pain, but said that she doesn't believe my scoliosis is affecting it. I also brought up about SI joints and she said we work on it when I am with her and it is doing fine. So I guess we ruled that out. I forgot if my scoliosis is structural or functional, but my spine does have a slight twist.

Sorry for the late response, but it is finals week in college so I am just finishing up and actually I am moving out of my apartment this week also, so busy busy busy! :O