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 November 10, 2008, 11:33:32 PM
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Jr. Member
Gender: 
Posts: 67
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Hi there.
:newhere
My Name is Scarlett. I am 26 years old. I have been living with chronic pelvic pain for almost a year. I have no children.
This started for me on December 25th, 2007. I was awakened in the wee hours of the morning with intense pain below my stomach, about halfway between my belly button and my pubic hairline. The pain was so intense that I was vomiting from it. The next day when it did not improve, I drove myself to the ER, where I was give ultrasounds and diagnosed with Ovarian Cysts. I was medicated and sent home.
The problem with this diagnosis is that I only have one ovary, (the right one was removed when I was 16) so pain on both sides seems rather unlikely.
Over the next few months, I have been shuffled from one doctor to another. I have been seen by OB/GYN's, Gastro-Intestinal specialists, general practicioners... and have finally located a doctor who deals in undiagnosed pelvic pain.
We have tried injections, accupuncture, massage, physical therapy, and medication. I have been on Amptitryptaline, Gabapentin, and Effexor, and my pain is still there.
I take anywhere from 3-6 Vicodin (10/325 strength) per day, as well as 3000mg Ibuprofen per day just to function.
My doctor is considering scheduling me for exploratory laproscopic surgery after the first of the year.
I am becoming increasingly frustrated with this, as most of the searches I do send me to endometriosis or fibromyalgia websites. Both of these things have been ruled out in my case.
I refuse to believe that the pain is "all in my head", pain doesn't just happen for no reason. :signs131
My pain never goes completely away. If we are to measure on a scale of 1-10, with 1 being "not bad" and 10 being "OMG I want to die", my pain lives at like a 2 or a 3 all the time. Kind of dull ache-y and never goes away. Then, for no apparent reason, it will spike to like a 9 and it feels like I am being stabbed with an ice pick. IT doubles me over and makes me cry.
If anyone has any ideas, I would love to hear them!!!
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November 11, 2008, 12:26:39 AM
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Sr. Member
Gender: 
Posts: 319
Tired..
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oh scarlett, i'm so sorry you've had to go through this! i certainly know how you feel, as do most of the people on this forum. just try to hang in there okay? feel free to scream and vent all you like, we'll listen. :)
it must be awful having to live in pain like that. my pains come and go.. for yours to be constant and you staying strong, i'm proud of you!
as far as ideas go medically, I'd like to help but "pain" is a pretty broad symptom in terms of diagnoses are concerned.
So to start, where exactly does it hurt? one side? both sides? does anything make it worse? (excersize, foods, stress? if you dont know try keeping a journal)
do you have any other symptoms? even if they seem unrelated, autoimmune disorders for example can cause a vast array of probelms that might seem totally irrelevant. dry eyes, vision changes, joint pain, fast heart, ears ringing, shortness of breath, anything at all? any inflamation, fluid, or other symptoms that the doctors have found?
looking back do you remember any red flags in the months or maybe up to 2 years before that day? slight changes in behavior, a cut that was infected. pains that went away and you didnt give them a second thought. anything at all?
if you think of anything be sure to tell your doctor right away, and MAKE SURE they do not blow it off as nothing, cause the smallest clue could be the key to it all
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If you have to ask, you are not ready to know -
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November 11, 2008, 12:46:20 AM
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Jr. Member
Gender:
Posts: 67
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Hi there, Jason. I was glad to have stumbled across this site, it looks like there are a lot of us "misfits" out there... but so few places where people actually talk to each other! So many single threads with no replies... this is a welcome change.
It can definately be very frustrating... I feel like maybe I am just a "baby" in this forum.. my pain has been going on for only a little less than a year, there are people on here that have had pain for over a decade! I don't even WANT to imagine that... I am insane already, how these other people manage I can't even imagine!!
I know "pain" seems pretty generic. Most of the time it is a dull ache about 4 inches or so high/up and down and it runs across almost from hip to hip, but not quite. Think instead of 180 degrees more like 130 degrees. It is on both sides, although some days one side or the other is worse.
Nothing in particular seems to make it worse. It doesn't matter if I eat or don't eat, if I have gone to the bathroom or not, if I exercise or be a couch potato. I have tried a variety of diets, and my doctor gave me a list of foods to not eat at all for 2 weeks and then pig out on and see if it made any difference... it didn't. It doesn't seem to react to stress, or the lack thereof. It seems to be random when the bad pain hits. For example, 2 weeks ago I was standing outside on a smoke break at work talking with a friend ( I know, bad Scarlett for being a smoker) when *wham* I was doubled over in agony. Sometimes the severe pain lasts only a few minutes before going back to the "normal" of like a 2 or 3 level instead of a 9 or 10. Sometimes it lasts hours, even days. I spent all day and most of Sunday night this past weekend back and forth between the couch and my bed in hateful pain. Sometimes it helps to lie down, sometimes heat from a heating pad or hot bath helps. I think the hot baths are more because they relax the rest of me and help me take my mind off of it a little bit. I can take enough pain killers to kind of numb my brain, but the pain doesn't really go away, it is more like my brain stops caring that it hurts for a while. Does that make any sense at all??
When I was 16 (10 years ago) I tried to kill myself over a romantic breakup. Yes, stupid teenager, no boy is worth that!! In any case, it ended up being a blessing that I was in the hospital for an overdose, as I had pain on my right lower quadrent. I was diagnosed with appendicitis and rushed into surgery. Guess what? My appendix was just fine, but I had a large (grapefruit sized) "growth" with tentacles on it like an octopus. One of those tentacles had wrapped around my right ovary and crushed it like a grape, causing the horrible pain. They removed the "growth", the ruptured ovary, and since they were at it, my appendix as well. The doctors never did figure out what the growth was, or what caused it, all they could tell me for sure was that it was not cancerous.
So, that explains my one ovary status now!!
I have not had a history of serious health concerns other than that up until now. I did have a tubal/ectopic pregnancy when I was 17 on the left side that was terminated. I have some scar tissue from both of those things, and the doctors are aware of those.
I am beginning to feel like they are using me for a vampiric ATM service what with all the blood tests they run on me. I swear, sometimes I wonder how many of those little vials you can let them take!!
They have done MRI's, CT scans, ultrasounds (both the over the tummy and the invasive internal probe kinds), blood work, urine tests.....
I am currently taking 1000mg of Gabapentin per day as well as 150mg of Effexor. I also take about 3000mg of Ibuprifen per day and my 10/325mg Vicodin as needed. Some days I get by with the Ibu, other days I pop Vicodin like they are M&M's!!
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November 11, 2008, 09:40:36 AM
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Group: Administrator
VIP Member
Gender:
Posts: 919
I Will Be Diagnosed !
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Welcome to the forum Scarlett
So sorry to hear about your suffering, makes you think about chronic long term health problems affecting people's life's, and really understanding, but only now because we are suffering ourselves...
I've suffered some similar problems so I will try to give you some ideas, like many of us here, I'm not sure what tests you have or haven't had done, I know it would be thousands (maybe slight exhaustion
Have you seen a chiropractor ?
MRI of the spine ? you've mentioned MRI but what part of the body?
or a Bone Density scan?
Also do you have a navel piercing ? odd questions perhaps but I'm trying to think outside the square !
Piercing (done by the wrong person could set off all kinds of symptoms) so just checking, something I looked into myself....
I hope we can help support and perhaps give you some ideas that may just bring about positive results for you
xx
We are a lovely, somewhat crazy/depressed/, but at least we have each other to vent to when needed.
xxxxx
Sammy
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November 11, 2008, 06:15:27 PM
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Jr. Member
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Posts: 67
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Hi Sammy :)
I have been to my chiropractor several times, I have had MRI's of the lower abdominal area, reproductive organs, spine, and gastro intestinal tract. I have not done a bone densitt scan yet... I do not have a naval piercing, Nipples yes lol but not my belly. But those are recent, long after the issues arose. I am the kind of person when things atart to spiral out of my control, I do things I CAN control, like cut my hair, buy new clothes, get a new tattoos.
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November 12, 2008, 07:56:28 PM
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Group: Administrator
VIP Member
Gender:
Posts: 919
I Will Be Diagnosed !
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Hi Scarlett :) I was thinking along the lines of pinched nerve or something if you had a navel piercing, so we have eliminated that one :) Perhaps asked for a Bone Density Scan. Also what about an Osteopath ? which will look at muscles and tendons? just a thought You mentioned long ago you had an op for appendix (which found problems with your ovaries) how long ago was that surgery? I know you've had ultrasounds, CT scans, many tests etc etc, but they don't show Endometrosis, only surgery can pick that up (well according to the doctors/gyno's I've seen anyway) Your symptoms do sound like Endo, I would go with the exploratory laproscopic surgery at the end of the year. Who is performing the op ? general surgeon or a gyno? Have they mentioned which parts they are looking at ? exploratory surgey can be for female bits, or tummy, or a range of things so make sure you're clear on the procedure xxx Sammy Hi Sammy :)
I have been to my chiropractor several times, I have had MRI's of the lower abdominal area, reproductive organs, spine, and gastro intestinal tract. I have not done a bone densitt scan yet... I do not have a naval piercing, Nipples yes lol but not my belly. But those are recent, long after the issues arose. I am the kind of person when things atart to spiral out of my control, I do things I CAN control, like cut my hair, buy new clothes, get a new tattoos.
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November 30, 2008, 10:10:44 PM
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Jr. Member
Gender:
Posts: 67
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Hi there. It has been craziness around here, what with Thanksgiving and all!!! I had 10 people crammed into my little apartment for Thanksgiving dinner on Thursday, it was a lot of fun though. We had turkey, homemade cornbread stuffing, green bean cassarole, mashed garlic potatoes and gravy, candied yams, pumpkin and pecan pie, and brownies. YUM!
I went to see my general practitioner last Monday. They have upped my Effexor to 225mg/day now.
I will go back to see my specialist on December 11th. The specialist I see is the only one in the state of Colorado who specializes in undiagnosed chronic pelvic pain in women. I was very lucky to find him! And what is really great about him is his thoroughness. Before I could even see him I had to fill out a 27 page heath history questionairre. He actually listens to me, in fact he will not schedule an appointment less than an hour long so he has enough time to really discuss things with me, get my thoughts and ideas, and then do an examination as well. He has encouraged me to seek out second opinions and other ideas. He believes that two heads are better than one. He has studied Eastern as well as Western types of medicine, so he is very open to new ideas. :thumb
The laproscopy they have in mind is going to be gyonocological mostly. I was also told only surgery can find it if it is endometriosis. They are thinking not though, because there is no cycle to my pain. To be sure we can rule out gynocological I am going to switch birth control methods and see if that does anything. I have been on the Depo Provera shot for 8 years. I am strongly considering the IUD. I want to do the copper one, with no hormones in it at all, so we can see what my body will do without the addition of hormones. 
:signs002 I have been told I do not have a very good chance of having children, about a 10-15 percent chance of conceiving, and then about an 85-95 percent chance that the pregnancy would be ectopic if I did... so kids are out for me. No worries, I never really wanted kids anyhow so I am not sad about it. It does create a dating challange though, as most guys wants kids, maybe not today, but eventually and with me, that is not an option. Also, since I won't date men who already have kids, it makes it a small sliver of the male population indeed that I have to work with! *sigh* Maybe I should invest in Energizer stock and become a lesbian, eh? LOL :ashamed005
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December 11, 2008, 07:48:01 PM
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Jr. Member
Gender:
Posts: 67
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Update time kids.
I just got home from the doctor's office.
They are taking me off of the gabapentin completely. Since it has not done much, and I was up to 1200mg/day, we decided to discontinue use completely.
They switched me from Vicodin10/325 over to Tramadol (Ultram) 50mg pills for my pain as needed.
We are continuing the Effexor at 225/mg per day, 150mg in the morning and 75mg at bedtime.
We are taking me completely off birth control until further notice. I had been on the Depo shot for 8 years. It'll be interesting to see what happens with that...
I am now waiting to hear from the doctor's office, we are scheduling me for a laproscopy to look for endometriosis and and scar tissue or other issues that may be contributing to the pain. I do not know when that will be yet, but probably in January sometime.
Blood tests came back all within normal ranges again. UA also normal, and (gee, ya think?!) I am not pregnant.
We did another pelvic exam today. You know, I used to be nervous about those, now I just crawl up on the table and splay myself open like a bloody Christmas goose like it's no big deal. All the same sore areas, uterus tender to probing, ovaries tender when pressed, bladder tender, pretty much all of that whole region is sore.
Maybe with the surgery, we can see something and move forward. I am coming up on the one year anniversary since this all started. Wow... where did the time go?!?
In the meantime... wait and see I suppose.
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December 12, 2008, 03:07:43 AM
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Group: Administrator
VIP Member
Gender:
Posts: 919
I Will Be Diagnosed !
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Jas, doctors say just wear and tear on the human body, most people if they had an MRI would have very similar problems.. Years of horse riding (only few falls, and years of hockey have taken there toll on my aging body)  Scarlett, wow gabapentin 1200mg's :o I couldn't even tolerate 100mg's... how do you deal with the side effects ? (I'm so sensitive to medications, looks like you do ok (minimal side effects for you I would imagine? ) I've never tried Vicodin so can't comment, but the Tramadol has been a god send for my pain, works well for me so fingers crossed they help you. I'm on 100mg per day. Sorry if you've mentioned this previously.....can't remember off hand, but have you had your appendix checked? Will be interesting to see if you have adhensions , they can certainly cause the pain you mention. More personal here, but hey we are getting use to all that will thousand and one doctors prodding and pocking around. Do you have constipation issues ? and/or pain in the pevic region when you go to the bathroom (bowel motions? ) LMAO I do the same for the exams now ;) no shame here  Pap Smear today (lots of discomfort, but no shame lol ) Let me know when you get the date for surgery, let's hope they can get you in quick. Be strong, you will find answers soon xxxx Sammy
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December 14, 2008, 08:31:33 PM
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Jr. Member
Gender:
Posts: 67
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Hey there. I do not have my appendix, it was removed when I was 16 at the same time that bizarre growth was removed.
As far as the side effects... I had the tiredness, the excessive yawning, the balance issues every time I would up the doseages. I would either feel spacey and sort of blank out for a few minutes at a time just staring into space and then slowly coming back a few minutes later, and others days it was like having ADD, so I.. hey, look at the butterfly! LOL
It got pretty odd when they added the Effexor, which I am up to 150mg in the morning and 75 mg at night. It kind of like a cross between really drunk, and a totally mellow marijuana high. Things seemed to slow down, and colours would kind of swirl at times or shapes on the tv were blurry. That was interesting... after a couple weeks that went away. Kind of a shame, it made me sleep like a baby lol. Brilliant for an insomniac like me, the idea of 12 hours uninterrupted sleep was bliss!
I try not to take the pain meds if I can. I try to take Ibuprofen first, and I take 1200 mg at a time when I take that. If I can get through the day on Ibu, I do. However, there are more and more days that the Ibu does nothing at all for the pain. The Vicodin works... ish. Everything works, ish. Nothing makes the pain go all the way away, which is so frustrating for me. I can get it down to like a 2 or 3 but it never stops, unless I am asleep. And of course, I have days it wakes me up breathless so, obviously it is not "off" when I am asleep either. I have been taking the Tramadol as needed, like I did the Vicodins. I have the 50mg tablets, and I can take up to 8 a day if I need to. So far, the most I have taken is 4. Have not really noticed any side effects yet. I've done my research and it looks like all the meds I am on can be nasty buggers when it comes time to try to discontinue them. Also, I have migraines. I take Maxalt for those, and it can interact with the Effexor. Luckily, I have not needed to take any since I started the Effexor. *knock on wood*
As far as personal, hell, what's personal anymore!? On Thursday, the doc said he would leave so I could change and I said "Why? You'll have your face and fingers all up in my goodies in about 30 seconds anyway..." He blushed bright pink. I thought it was kinda funny. I mean, what IS that, the illusion of privacy? I've had boyfriends who weren't as intimately acquainted with my goodies as the doctors have gotten in the last year!!
I am not shy, never have been. As far as bowel movements, I go through phases with constipation. I'm sure it has somewhat to do with my appetite, next to nothing tastes good anymore. I force myself to eat when I take my meds because they seem to make me naseaous if I don't. But I'll think of a food and decide, "yummy, I want that!" And then I make it, and pick at it. Everything tastes, er... off I guess is the best way to put it. It's not like the cardboard taste you get when you have a cold or the flu, it's just that the flavors don't seem to match the smell of the food. Does that sound strange, or have any of you noticed that is true for you as well? Textures are off too. A steak doesn't seem like a steak when I put it in my mouth, and pasta is just... ucky lol.
As far as pain with bowel movements, it depends. Obviously constipation is always uncomfortable no matter if you are healthy or ill. It is particularly painful for me because of the locatuion of my pain, so when you bear down and strain, all the muscles around my already sensitive areas constrict. I have taken to keeping a wash cloth on the counter for when it hurts bad enough to need something to bite on. Other times, my stools are loose, not quite diarhea but like the consistancy of toothpaste. I do have issues with gas as well.
Here's another kind of odd one, any of you get the sensation like you need to pee, but when you go the bathroom, you can't go? You have the burn-y sensation like your bladder will burst, but when you sit there, it almost seems like you have to coax your body to release anything, and when it does you only get a few drops? My urine seems normal, yellowish or clear.
Ok, enough from me. Can't wait to hear if any of you guys are having anything like mine. :) It's nice to be able to compare notes, so to speak. Nice to find people who don't look at you like you're crazy.
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