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View Full Version : Hi, I'm new, just thought I'd share.


OwfreakinOW
07-13-2007, 10:27 AM
Sorry if this is all too much information, but really, isn't IC and vulvodynia too much information in and of themselves?

The constant pain and suffering began back in July 1998 when I was 27 y/o...
Let's just say that this one particular guy got a little too close, like they do, although, I wouldn't say he took my virginity... (The gyno did that later - the specula, or whatever it's called, was too big and made me bleed.) During the "encounter," I pushed the guy (who was trying to, ummm, push it too far) away, b/c something inside my pelvic/abdomen area felt a brief sharp pain, which brought me to my senses enough to know I didn't really want what was going on. (And he knew the whole time he made moves on me that I didn't want it, b/c we talked about it many times, and he knew I wanted to stay a virgin until I was married. He wore me down though. I'm not frigid.) Anyway, the sharp pain was only for a moment. However, within a few days of the cursed "encounter," I experienced a pelvic/bladder pain that would not be denied. Quick run down to the student health center (yeah, I was in school at the time) revealed/suggested "Honeymoon Cystitis"... without the honeymoon, of course. :mad:

So right when I started going thru all this pain, guess what happened? He decided then would be a good time to tell me he had no interest in marrying me. And you know what? I was relieved. ;)

Anyway, I survived the guilt, but even to this day feel like maybe I got what I deserved. Being brought up in a Baptist church w/ that all consuming fear of BURNING hell and all, it isn't any wonder, I guess. "I may be done w/ my sin, but my sin ain't done w/ me!"

Well. Maybe I should've just acted like a cold, disinterested snob, maybe it's all my fault for being true to myself and allowing things to go as far as they did...


So I can't feel too racked w/ guilt over the whole incident.

I remember telling this guy about my agony w/ the pain and the docs at that time. "Does it burn real bad in the mornings?" he asked me. Surprised, I replied, "Yes it does!!!" (It did back then - now it just burns all the time.) He'd had prostate infections which were somehow related to his testicular cancer. But it was so odd that he seemed to know just what I was experiencing at the time... :hmm: hmmm...

OK, so I've gone to many docs over the course of the last 9 years, finally got a dx of vulvodynia, but also have the sx of IC. So here goes the litany of symptoms I experience: Constant bladder/pelvic pressure, stabbing/burning pain when I pee, no sign of STD, could pee 40 times a day if I would allow myself... every ripping, burning drop making my "condition" worse and more painful... sitting SUCKS big time, it's the worst, back hurts too, clitoris hurts quite often, UTI meds don't really work, cranberry juice only made things worse, vaginal meds were gawd-awful (metrogel being the worst -I actually had SPASMS in my THIGHS when I was pursuaded to use it the second and last time!!! :mad:), med for vulvodynia makes orgasms pointless (yawn), frustration at not knowing the cause, loss of money over doc. bills, no desire to work (sitting again - agony)... the very thing I went to school for, I can't do b/c it involves 8 hours of sitting a day. Oh, the irony...

I had a thyroid nodule removed before all this back in the mid 90's. I've noticed that ppl here seemed to have some kind of thyroid issue. Docs also thot maybe I had Hashimoto's, but it's not proven.
Constipation is a constant, and I took ballet from the time I was 3 until I was 13, then from 18 - 20 y/o. I was very flexible, able to touch my foot to my head (and I still could, if I weren't so worried about suggestions not to do major excercise from various resources on the net).

Oddly enough, coffee makes the pain more bearable (the caffeine?); Sodas make the pain way worse; I do better over the long term when I don't let myself pee every time I need to; Calcium Citrate seemed to help a little but heartburn from the supplement wasn't worth it for me; the low oxalate diet was too restrictive and I gained 10 pounds on it; walking and standing feel way better than sitting or lying down; when I wake up in the morning, for a brief few minutes, my abdomen is really tight and tense, but there's no pain until I move or get up or start thinking about things - I wouldn't say it feels healthy in those brief moments though, but the pain doesn't seem to be there until I'm really conscious; sex is only painful w/ penetration but the rest of it totally reduces the pain... until afterwards, later (gasp, paaaaybaaaack!).

Overall, my pain has been unrelenting, without remission.

Can anyone related to my story? Thyroid issue, pain sitting, constipation, onset w/ "encounter" (or "MISTAKE"!!!! ...yeah, I'm bitter. :rant:), suspicion that it may be a lurking bacteria or kinda conversely, was an evil pharmaceutical/chemical reaction that's the root cause... suspicion that it could've been that physical trauma... among other things?

I KNOW it's not in my head. But it's just odd that I've read some of your posts and it seems like the very same sx and other conditions I've had.

I also just have this strange, gut feeling (no pun intended) that the cause must've been something quite simple... that could've been fixed by now w/ something equally simple.
Didn't mean for this to sound so aggro. :( It's just that 9 years of this crap is starting to really get to me. ;)

Kara29
07-13-2007, 02:07 PM
Welcome to the ICN. :welcome:

I'm so sorry to hear that you've been suffering for so long with IC. Do you happen to have an IC Specialist who is helping you out with your IC pain?
You may find the ICN Patient Handbook a nice place for information.
http://www.ic-network.com/handbook/index.html

There are places to get information regarding Vulvodynia and Vestibulitis.
A good chronic pelvic pain doctor who is knowledgeable in these issues may be able to offer you some suggestions to relieve some of the pain when sitting. Have you been diagnosed with Pudendal Nerve Entrapment as well? That can cause a LOT of pain when sitting but then again so can the other conditions you have been dx with.

I'm going to list several links that I've found helpful. I've too been suffering for about 10 years now.

This site give information on Vulvodynia: http://www.vulvalpainsociety.org/html/vulvodynia.htm

This link gives some information on Vestibulodynia:
http://www.vulvalpainsociety.org/html/vestibulodynia.htm

This link gives some ways that you can help your self, some at home tips:

http://www.vulvalpainsociety.org/html/selfhelp.htm

This site may be of some help in understanding the connections between all of your conditions.

http://www.womenshealthmatters.ca/centres/pelvic_health/vulvodynia/index.html

What medication are you taking for this pain? Have you seen specialists who deal with all of these conditions together?

I have the same conditions as you do minus the thyroid disease. I wish I could help you with that part but maybe someone else here on the boards can come around and talk with you about this.

There are lots of women on here that have Vulvodynia, Vestibulitis, IC and many other conditions. I hope you find some great support here and maybe some helpful information. Knowledge about each condition is power. The more you learn, the better you will be able to get some help. If you feel up to it, check out the other message boards here that are related to your conditions. We're all here to offer as much help as we can.

There may not be a cure for these things but there are some things that can be done to make you more comfortable and relieve your pain some what. It requires finding the right clinician who will be patient enough and knowledgeable enough to spend the time it may take to get to the root of the problem, and offer the intervention that will work best.

Kara:hi:

leelee88
07-13-2007, 03:06 PM
Hello and :welcome: :welcome:

navemj
07-13-2007, 04:02 PM
Hello! Welcome to the IC site. You will find much needed support here. I have suffered with IC for 11 years now. I am sorry to hear you have been through so much. The Vulva pain in my opinion is much worse than the IC pain. I didn't experience vulvudynia until after my laparscopy. Not sure what happened. It has been a long battle fighting the IC and Vulva, but God has healed me of the VV. Do you have a good IC doctor? I had to travel two hours away to find one at first. I went to a gyno over the vv. He gave me estrace cream compounded with elmiron. Then I started installation treatments. I also took zelnorm that they just took off the market for constipation. I also had pelvic floor physical therapy for pelvic floor dysfunction. This was wonderful for me and helped very much. I took elavil for the nerve pain. I had to do alot of praying and searching to find a treatment. You will find many articles on this site that can help you research both the IC and VV condtion. Hope you feel better soon.

Kara29
07-13-2007, 04:32 PM
Lyrica had been some help with my nerve pain. I also take Ambien to sleep at night. For as needed medication I take Vicoden, Fentanyl, Flexeril, and Klonopin. I take Zofran for nausea when I have to take a Narcotic. I'm working on finding help for the VV. I've been on a round of yeast infection medication that has made things worse for my VV. I'm going to try Mycostatin which is nystatin in an ointment form. I am working with a Pudendal Nerve Specialist (OBGYN) and Chronic Pelvic Pain Doctor with the Vulvodynia and Vestibulitis.

Just thought since your story sound similar to mine in a few ways that it may help you to know what helps me a bit to reduce the pain. Maybe you could talk to you Doctor about some of the information to find on here.

Kara

meandmybladder
07-14-2007, 12:18 AM
My heart aches for you. What an awful time you have had. I don't know you but, I wish I could put my arm around you and hug you. I can feel your pain through your words. Please don't blame yourself in any way for what has occurred. This is not your fault.

Read everything you can get your hands on about your conditions. Knowledge empowers you. If need be, find a new doctor who is willing to treat you with medications to make you more comfortable. It may need to be a pain specialist, rather than a urologist or GP. It may take several tries with various meds and treatments before you find something that works. Don't give up. You've suffered too long already.

I'm also a firm believer in talking to someone, whether it's a counselor, psychologist or psychiatrist. Depression and anger usually occur with any long term pain management. It's normal. It gets to you when you have to deal with so much pain, everyday of your life.

You've found a wonderful site with extremely knowledgable & compassionate people. Pull from these resources and use it to your advantage.

I :pray: you get some relief soon. Please keep us updated and I'm so glad you found us.

LouLou
07-14-2007, 03:08 AM
Your symptoms and mine are pretty much identical. Sitting is the worst for me too. In fact I'm sitting with my legs up and an ice pack as we speak. I do find following the low oxalate and ic diet made things less bad ( not really better- just less bad)- but I lost too much weight on them. So now I follow the ic diet and as much of the low oxalate diet as I can. Do you know if you have pelvic floor disfunction? I don't, but a friend with my symptoms does, and physical therapy has helped her quite a lot. Her gyno diagnosed it and sent her to a physical therapist. My uro sent me to a physical therapist too. She has tried a variety of things with no luck yet, but it takes a while. She says I have a lot of swelling and redness, but isn't sure why. She is at least sympathetic and had some ideas of things that may help, which is the better then what my gp and uro have had. Good luck. This message board has been a life saver for me. As to how you got it, who knows! There are tons of theories out there. Mine came on just after menopause and surgery, and after I stepped on a beehive (allergic reaction?) and got much worse after a bad UTI. So, I can't figure out if it is hormones, surgery after-effect, allergy, or infection related. Reading the message boards and articles here have been a help to me; I hope they help you too!

tigger_gal
07-14-2007, 03:51 AM
:hi: and :welcome: you will find a wealth of information here on the icn. I am glad you found us.

marsi4
07-14-2007, 05:38 AM
Hi and Welcome,

Please don't feel guilty for having had a sexual encounter. I understand that you were raised in a religious environment, and told that sin has certain reprocautions, but I really don't think that your problems have any relation to sex.

I have most of your symptoms when I'm in a flare, and have suffered with pelvic pain, pressure, inflammation, and most of the symptoms you have and more for 35 years. I have been diagnosed with ic, but I feel that there is more going on then just a bladder condition. I also have pelvic issues that cause chronic pelvic pain. I haven't been able to figure it out my entire life and I haven't been able to understand the cause and doctors are just as perplexed about this condition as well and are not able to give a valid explanation, noe do they really know how to treat this condition.

What I would like you to do is go see a urologist and have a cystoscopy exam doen with a hydrodistention, and see if you have ic. If you get an IC diagnosis you can check out all the different treatments available and medication and try to find something that helps. I,m curious if you took antibiotics when you were diagnosed with honeymoon cystitis. It's a good idea to take a round of antbiotics just to make sure if it's bacterial it can be treated. If the symptoms persist then it may be ic. The only symptom I don't have is burning upon urinatiin. I have had burning in my bladder, urethra and left groin area for 14 months. I have heard of others though who have ic and experience burning upon urination. You definitely need to avoid acidic drinks,fruit, soft drinks, alcohol, coffee. Those are the worst triggers. At some point I am sure your symptoms will subside but I know that it seems like it will never end , but I am sure that your symptoms will improve and become more manageable. I know how difficult, painful, frustrating, exhausting, and life altering this condition is, but you have to stay strong and fight it each day until you get better. We have to try and survive with whatever our afflictions are, but God I know how agonizing this illness is. This is a great place for support and if anyone understands, we do. I would recommend the ic diet, but do not starve yourself, or be afraid to eat. I hope you start to feel better and please let us know how your exams go and what diagnosis you get. My thoughts are with you and I wish there was something more I can do to help.

Marsi4:angel: