Pippin31
07-16-2003, 12:30 PM
Hi,
Just needed to vent. I am utterly stunned at what happened today! A brief history...pelvic pain for about 15 years. Always came and went away within 2 weeks. In 2000, twisting pain hit! Never went away (for eight straight months until I was put on Lupron). Always happened mid-cycle and I would either be early, late, or have 72 day periods. During a lapro. I was over extended in stirrups causing a T/ 11 disc herniaton compressing the spinal cord and causing nerve pain in my right leg. Spent the last 3 years trying to find cause for pelvic pain. Pelvic pain also associated with what feels like a bladder infection, but never is. Diagnosed with Irritable bowel syndrom in the beginning of all this, but then doc felt it was GYN in nature because her treatment didn’t work after a month and pelvic pain was unbearable.
Fast forward......
Just had another lapro done again in April by reproductive endroconologist and a bladder scope. Bladder doctor felt that he wouldn’t see anything anyway being on Lupron for 2 ½ years including time of surgery (they were looking for endometriosis). They did find a part of my intestine that the doctor called “very angry looking” very inflamed!! Red and grey looking. He said reproductive organs were clean (but they would be because endometriosis shrinks while on Lupron!!!!!!!!!!!!!!!!)
Off I went to the GI doctor who told me she still felt my “twisting pain” was GYN related.
I had my follow up with her today and she is back to the IBS diagnosis. I just got done telling her I got my period for the first time last week (in 2 ½ years because of Lupron) and the twisting pain woke me out of a heavy sleep. Also, week prior I had the “bladder infection” feeling.
Now, I have been on narcotic pain medication for about 2 ½ years! Hydrocodone...that is until I went to a pain management doctor who added the patch. This has allowed me to function better however, when my side is not twisting in pain, my back is. When my back isn’t hurting, my side and leg are. I have spent countless nights without sleep, only to be found by one of my parents, sitting at the kitchen table crying in pain and shaking from pain when they wake up in the morning.
One of my parents has always accompanied me to my doctor appointments (out of concern, but primarily so I don’t get quizzed to death when I get home!!!!) They have been present during frank discussions regarding my pain medication and how chronic pain patients become DEPENDANT! Different from addiction. I have printed out numerous articles stating this as well for my parents to read.
O.K...Here goes.....Today, at my follow up visit with the GI doctor, my mom and the doctor sat there and had a discussion about me being a drug addict!!!! As if I wasn’t sitting there. I was so shocked that my mom just blurted out..”Do you think she is an addict?” and the doctor saying “I am certainly concerned about that!!!” “Sure, there is that possibility” Well, I frigging lost it on my mom right in front of the doctor...”you don’t have to take this dreaded medicine because you don’t have to deal with my pain” and the doctor jumps in and says “but your parents are dealing with it every day!” I was sooooo hurt and angry! I thought my mom understood. I felt like I was cornered! After all this, how can she call me a drug addict??? She never said that to me in any of our discussions. And why of all people to ask the GI doctor this? She never said that to the pain management doctor??
I am so hurt and devastated! Not too mention, having this diagnosis of IBS when I feel from the depths of my soul it isn’t what is causing the pelvic pain. Sure, I have a problem in that area and always have, but intestinal cramps and pain is so damn different than this twisting pain. Plus, what the hell does the bladder have to do with the bowel? Not to mention, before Lupron they kept seeing a mass on my ovary. While on Lupron, the mass went away!! What the heck does irritable bowl have to do with it?
I don’t know, today was a total shock to me. First that ridiculous diagnosis and then to have my mom discuss me being a drug addict with this doctor!!! :mad:
Sorry this is so long, I had to get it off of my chest!!!
Just needed to vent. I am utterly stunned at what happened today! A brief history...pelvic pain for about 15 years. Always came and went away within 2 weeks. In 2000, twisting pain hit! Never went away (for eight straight months until I was put on Lupron). Always happened mid-cycle and I would either be early, late, or have 72 day periods. During a lapro. I was over extended in stirrups causing a T/ 11 disc herniaton compressing the spinal cord and causing nerve pain in my right leg. Spent the last 3 years trying to find cause for pelvic pain. Pelvic pain also associated with what feels like a bladder infection, but never is. Diagnosed with Irritable bowel syndrom in the beginning of all this, but then doc felt it was GYN in nature because her treatment didn’t work after a month and pelvic pain was unbearable.
Fast forward......
Just had another lapro done again in April by reproductive endroconologist and a bladder scope. Bladder doctor felt that he wouldn’t see anything anyway being on Lupron for 2 ½ years including time of surgery (they were looking for endometriosis). They did find a part of my intestine that the doctor called “very angry looking” very inflamed!! Red and grey looking. He said reproductive organs were clean (but they would be because endometriosis shrinks while on Lupron!!!!!!!!!!!!!!!!)
Off I went to the GI doctor who told me she still felt my “twisting pain” was GYN related.
I had my follow up with her today and she is back to the IBS diagnosis. I just got done telling her I got my period for the first time last week (in 2 ½ years because of Lupron) and the twisting pain woke me out of a heavy sleep. Also, week prior I had the “bladder infection” feeling.
Now, I have been on narcotic pain medication for about 2 ½ years! Hydrocodone...that is until I went to a pain management doctor who added the patch. This has allowed me to function better however, when my side is not twisting in pain, my back is. When my back isn’t hurting, my side and leg are. I have spent countless nights without sleep, only to be found by one of my parents, sitting at the kitchen table crying in pain and shaking from pain when they wake up in the morning.
One of my parents has always accompanied me to my doctor appointments (out of concern, but primarily so I don’t get quizzed to death when I get home!!!!) They have been present during frank discussions regarding my pain medication and how chronic pain patients become DEPENDANT! Different from addiction. I have printed out numerous articles stating this as well for my parents to read.
O.K...Here goes.....Today, at my follow up visit with the GI doctor, my mom and the doctor sat there and had a discussion about me being a drug addict!!!! As if I wasn’t sitting there. I was so shocked that my mom just blurted out..”Do you think she is an addict?” and the doctor saying “I am certainly concerned about that!!!” “Sure, there is that possibility” Well, I frigging lost it on my mom right in front of the doctor...”you don’t have to take this dreaded medicine because you don’t have to deal with my pain” and the doctor jumps in and says “but your parents are dealing with it every day!” I was sooooo hurt and angry! I thought my mom understood. I felt like I was cornered! After all this, how can she call me a drug addict??? She never said that to me in any of our discussions. And why of all people to ask the GI doctor this? She never said that to the pain management doctor??
I am so hurt and devastated! Not too mention, having this diagnosis of IBS when I feel from the depths of my soul it isn’t what is causing the pelvic pain. Sure, I have a problem in that area and always have, but intestinal cramps and pain is so damn different than this twisting pain. Plus, what the hell does the bladder have to do with the bowel? Not to mention, before Lupron they kept seeing a mass on my ovary. While on Lupron, the mass went away!! What the heck does irritable bowl have to do with it?
I don’t know, today was a total shock to me. First that ridiculous diagnosis and then to have my mom discuss me being a drug addict with this doctor!!! :mad:
Sorry this is so long, I had to get it off of my chest!!!
Sponsor
whaleylaker
07-16-2003, 01:29 PM
Pippin That must have been horrible! You would think that your Dr. would have informed your mom on addiction, and on top of this you get bad news. That just stinks. I hope everything works out,Lake...P.S. what is Lupron?
painintheneck2
07-16-2003, 02:39 PM
WOW!! That sucks, Pippin! Maybe because your doctor can't find a @#@!&* diagnosis, she used what your mom said to her advantage. Ya know, like "it can't be that I'M (meaning your doctor) not diagnosing her properly, so YES it must be that she is a drug addict!"
I've been called that before too while being on Lortabs for 2 years. It really angers me also! No one wants to be labled that. But if the medicine gives you a better quality of life and they want to lable you then whatever!!! It's not fair and if your parents and obviously your doctor can't feel what you are feeling then they can't understand it. I wish that your mom had a little more faith in you than that. I'm sure you felt totally bombarded and teamed up against.
I don't blame you for feeling hurt and angry. It might just be time to find a new doc, if this one has started labeling you and obviously is not getting to the root of your problem.
Hang in there. You can't control what others think. Just tell them "if that's what you want to think of me because none of you can find the right diagnosis then go ahead, but I know the pain I'm in and I totally resent the fact that you don't believe me" I would think that your parents would be concerned about trying to find you another doctor that has some answers.
Good luck and here's a hug ((((((( )))))))))
Wend
I've been called that before too while being on Lortabs for 2 years. It really angers me also! No one wants to be labled that. But if the medicine gives you a better quality of life and they want to lable you then whatever!!! It's not fair and if your parents and obviously your doctor can't feel what you are feeling then they can't understand it. I wish that your mom had a little more faith in you than that. I'm sure you felt totally bombarded and teamed up against.
I don't blame you for feeling hurt and angry. It might just be time to find a new doc, if this one has started labeling you and obviously is not getting to the root of your problem.
Hang in there. You can't control what others think. Just tell them "if that's what you want to think of me because none of you can find the right diagnosis then go ahead, but I know the pain I'm in and I totally resent the fact that you don't believe me" I would think that your parents would be concerned about trying to find you another doctor that has some answers.
Good luck and here's a hug ((((((( )))))))))
Wend
Wes1212
07-16-2003, 05:50 PM
I can kind of relate to the feeling you are experiencing. During the middle of my PegIntron/Rebatol therapy i was getting quite ill every week. My neurologist had put me on 300mg neurontin 3x daily and my supply was in 100mg capsuls, 50 mg of zoloft daily, Another doctor had me taking darvocet, one to two tablets every 4 - 6 hours as needed for pain, and 5 capsules/day of Rebetron, so I was taking a total of 24 pills every day plus one injection each week. All this was for PegIntron/Rebetol therapy and managing side effects while trying to cure hepatitis C.
Those shots used to knock me for a loop with headaches and body pain that kept me literally bedridden for most of the week. I used to go out for blood draws, doctor visits, and to get prescriptions filled, was about it.
At around week 24 of this, I had just taken the interferon the day before when my parents came to visit. My mother, always the melodramatic one, stood over my bed where I lay in horrible suffering and screamed and cried and yelled at me that she could no longer see me in this condition and that I needed to get off all the medication, that she thought I was addicted to all of it and that it was killing me. This went on from about 6pm until midnight until I went to my father and asked for his help to stop her tormenting me. He had to literally drag her out of my room kicking and screaming that I was going to die if I didn't get off all the medication.
(my doctor had been telling that i was one of his "star patients" on the Peg/Reb therapy as long as i could ride it outwithout getting too upset) (the black boxed, bold type warning in the drug package insert said "this medication causes or aggrevates serious and/or life threatening neuropsychyiatric adverse reactions")
I called the pharmaceutical company's nurse counselor program (this is how harsh that med is, they had nurse counselors manning phones 24/7 for patients emergencies) and ordered about 10 copies of the "coaching booklet" for caregivers, family, and friends of Peg/reb patients. It helped a little.
I sincerely hope that you can find the cause(s) of your pain and have it treated effectively. I also hope that you can help your mother see the light and realize that adding emotonial stress to your condition(s) is not helping you to overcome them.
It's a HARD ROAD sometimes! They mean well but their emotional attachment can bite everybody in the butt!
Best wishes,
wes
Those shots used to knock me for a loop with headaches and body pain that kept me literally bedridden for most of the week. I used to go out for blood draws, doctor visits, and to get prescriptions filled, was about it.
At around week 24 of this, I had just taken the interferon the day before when my parents came to visit. My mother, always the melodramatic one, stood over my bed where I lay in horrible suffering and screamed and cried and yelled at me that she could no longer see me in this condition and that I needed to get off all the medication, that she thought I was addicted to all of it and that it was killing me. This went on from about 6pm until midnight until I went to my father and asked for his help to stop her tormenting me. He had to literally drag her out of my room kicking and screaming that I was going to die if I didn't get off all the medication.
(my doctor had been telling that i was one of his "star patients" on the Peg/Reb therapy as long as i could ride it outwithout getting too upset) (the black boxed, bold type warning in the drug package insert said "this medication causes or aggrevates serious and/or life threatening neuropsychyiatric adverse reactions")
I called the pharmaceutical company's nurse counselor program (this is how harsh that med is, they had nurse counselors manning phones 24/7 for patients emergencies) and ordered about 10 copies of the "coaching booklet" for caregivers, family, and friends of Peg/reb patients. It helped a little.
I sincerely hope that you can find the cause(s) of your pain and have it treated effectively. I also hope that you can help your mother see the light and realize that adding emotonial stress to your condition(s) is not helping you to overcome them.
It's a HARD ROAD sometimes! They mean well but their emotional attachment can bite everybody in the butt!
Best wishes,
wes
Pippin31
07-16-2003, 05:56 PM
Hi,
Thanks for your replies. It’s nice to have people who understand!!
whaleylaker
Lupron is a medication originally given to men with testicular cancer. It’s a form of chemotherapy. It is a drug that is meant for a 6 month period. I was given this drug for 2 ½ years at almost twice the dose. It put me into temporary menopause. Shut down my ovaries. It made the pain go away about 90% of the time. I felt like I hit the lottery. However, side effects included hair falling out, memory loss, weight gain, sleeplessness, hot flashes and mood swings. Who the heck would take this drug if not for sever pelvic pain? Not too mention, the doctors can’t figure out why it made the pain go away when they didn’t see anything (looking for endometriosis which is like lesions growing on your bowels, bladder, reproductive organs every month) My RE doctor was so convinced I had it, he kept me on it for an over extended amount of time. Now....he isn’t sure because he did surgery (while still on Lupron which SHRINKS the lesions). So, the GI doctor talked to him, he said he didn’t see anything other than the bowel issue ...so that is what it must be!!!!! According to them!!!!!!!
painintheneck2
I wish mom had more faith in me too. I was so hurt! Like I said, I really thought she understood! She would go out of her way to pick up a script for me, go have it filled and pay for it. I was totally stunned when she came out with that today.
Mom blames everything on the pain meds. Hair falling out, memory loss, sleeplessness (when I do fall asleep around 5 am I sleep until around 12:30 in the afternoon....Looks like a druggie I guess) and mood swings. This..in my opinion..is all from the Lupron. It is symptoms everyone else who is on it has!!!!! But see, my RE doctor denied these side effects!! Guess that’s why mom blames the pain meds. (Thinking I am out of control!) How is that? I finish on time...once or twice I have been 1-2 days early, but come on!! Like I said, everyone who is on Lupron experiences those side effects! It shuts down your hormones!! What do you expect?!?
Anyway, thanks for letting me vent!!
Thanks for your replies. It’s nice to have people who understand!!
whaleylaker
Lupron is a medication originally given to men with testicular cancer. It’s a form of chemotherapy. It is a drug that is meant for a 6 month period. I was given this drug for 2 ½ years at almost twice the dose. It put me into temporary menopause. Shut down my ovaries. It made the pain go away about 90% of the time. I felt like I hit the lottery. However, side effects included hair falling out, memory loss, weight gain, sleeplessness, hot flashes and mood swings. Who the heck would take this drug if not for sever pelvic pain? Not too mention, the doctors can’t figure out why it made the pain go away when they didn’t see anything (looking for endometriosis which is like lesions growing on your bowels, bladder, reproductive organs every month) My RE doctor was so convinced I had it, he kept me on it for an over extended amount of time. Now....he isn’t sure because he did surgery (while still on Lupron which SHRINKS the lesions). So, the GI doctor talked to him, he said he didn’t see anything other than the bowel issue ...so that is what it must be!!!!! According to them!!!!!!!
painintheneck2
I wish mom had more faith in me too. I was so hurt! Like I said, I really thought she understood! She would go out of her way to pick up a script for me, go have it filled and pay for it. I was totally stunned when she came out with that today.
Mom blames everything on the pain meds. Hair falling out, memory loss, sleeplessness (when I do fall asleep around 5 am I sleep until around 12:30 in the afternoon....Looks like a druggie I guess) and mood swings. This..in my opinion..is all from the Lupron. It is symptoms everyone else who is on it has!!!!! But see, my RE doctor denied these side effects!! Guess that’s why mom blames the pain meds. (Thinking I am out of control!) How is that? I finish on time...once or twice I have been 1-2 days early, but come on!! Like I said, everyone who is on Lupron experiences those side effects! It shuts down your hormones!! What do you expect?!?
Anyway, thanks for letting me vent!!
Pippin31
07-16-2003, 06:07 PM
Hi Wes...
You and I must have posted at the same time :D
Thank you for your reply. I am so sorry you had to go through all of that.
I will look into the booklet you discussed. I thought I was doing the right thing letting mom read stories of people in similar positions and the things they had to do to function.
I know it’s out of fear and concern on my moms part, but like I said, I was ambushed today. She discussed it with the doctor who is giving me pain meds and I thought that cleared things up. I see him in the morning, I am going to tell him what was said. It wasn’t just my mom calling me an addict, it was the GI doctor as well. This is someone who I haven’t been to in 3 years, and she is sitting there frigging egging my mom on about being an addict! I made up my mind right then and there that I wouldn’t be going back to her!!!
You and I must have posted at the same time :D
Thank you for your reply. I am so sorry you had to go through all of that.
I will look into the booklet you discussed. I thought I was doing the right thing letting mom read stories of people in similar positions and the things they had to do to function.
I know it’s out of fear and concern on my moms part, but like I said, I was ambushed today. She discussed it with the doctor who is giving me pain meds and I thought that cleared things up. I see him in the morning, I am going to tell him what was said. It wasn’t just my mom calling me an addict, it was the GI doctor as well. This is someone who I haven’t been to in 3 years, and she is sitting there frigging egging my mom on about being an addict! I made up my mind right then and there that I wouldn’t be going back to her!!!
Wes1212
07-16-2003, 07:31 PM
my experience with GI docs is that if it isn't a problem with digestion, it doesn't exist and they can't treat what doesn't exist. So to a blindfolded GI, it doesn't make sense to seek a cure for what doesn't exist.
mokita
07-16-2003, 10:31 PM
Hey Pippin...
I was just reading your post and some of the things you have goin' on re: urinary tract sound similar to something I read here awhile back. I'm sorry if I sound vague, but... it's just your story is striking a chord... it seems to me the name of the condition was "interstitial cystitis"... I c/b completely wrong here. Anybody can jump on in. But, maybe do a search and it'll pop up. The person, I think, ended up w/ a urologist that helped.
If I find anything else, I'll pop in and post it.
I am so sorry that you had to deal w/ freaked out folks on top of everything else. Your parent's emotional state is somewhat understandable... The doctor jumping on the bandwagon is not. :(
I sure hope you find some answers, dear. I hate to see you so down.
I'll keep you in my prayers.
Good luck.
Karen
P.S. Just searched that... and it is the IC. Chriztene posted a number of threads. Didn't read them all, but wanted you to know! :)
------------------
9/22/00 24 hour labor, baby posterior, left tailbone killing me
12/00 MRI - PCP said nothing amiss - but, had to begin taking vicodin
2/8/02 - 2nd baby born after long, painful pregnancy, weight gain didn't help
2000-11/02 various PT + pain meds
11/02 Referred to Neuro
3/03 NEW MRI - shows slight bulge L3-L4,slight DDD, neural foramen involved, Superior aspect S1 and L5 Nerve root involvement -Neuro Refers to PM for ESI
3/03 PM Doc orders ESI
3/21,4/1,4/8 - ESI's no help
5/9 - Discogram - shows Tear L4 w/ significant leak onto nerves, DDD
Performing doc oversedated, False Negative (pm doc & I agree)
New Consult w/ Dept Head Cleveland Clinic 7/8 to discuss possible new discogram/IDET candidacy
7/8-Doc ordered Facet Joint nerve block for 7/29 to rule out/identify as pain generator. If not, new discogram.
Also, thinks tailbone prob is dif issue - wants x-ray - THOUGHT I had one - didn't!! They are ordering.
[This message has been edited by mokita (edited 07-16-2003).]
I was just reading your post and some of the things you have goin' on re: urinary tract sound similar to something I read here awhile back. I'm sorry if I sound vague, but... it's just your story is striking a chord... it seems to me the name of the condition was "interstitial cystitis"... I c/b completely wrong here. Anybody can jump on in. But, maybe do a search and it'll pop up. The person, I think, ended up w/ a urologist that helped.
If I find anything else, I'll pop in and post it.
I am so sorry that you had to deal w/ freaked out folks on top of everything else. Your parent's emotional state is somewhat understandable... The doctor jumping on the bandwagon is not. :(
I sure hope you find some answers, dear. I hate to see you so down.
I'll keep you in my prayers.
Good luck.
Karen
P.S. Just searched that... and it is the IC. Chriztene posted a number of threads. Didn't read them all, but wanted you to know! :)
------------------
9/22/00 24 hour labor, baby posterior, left tailbone killing me
12/00 MRI - PCP said nothing amiss - but, had to begin taking vicodin
2/8/02 - 2nd baby born after long, painful pregnancy, weight gain didn't help
2000-11/02 various PT + pain meds
11/02 Referred to Neuro
3/03 NEW MRI - shows slight bulge L3-L4,slight DDD, neural foramen involved, Superior aspect S1 and L5 Nerve root involvement -Neuro Refers to PM for ESI
3/03 PM Doc orders ESI
3/21,4/1,4/8 - ESI's no help
5/9 - Discogram - shows Tear L4 w/ significant leak onto nerves, DDD
Performing doc oversedated, False Negative (pm doc & I agree)
New Consult w/ Dept Head Cleveland Clinic 7/8 to discuss possible new discogram/IDET candidacy
7/8-Doc ordered Facet Joint nerve block for 7/29 to rule out/identify as pain generator. If not, new discogram.
Also, thinks tailbone prob is dif issue - wants x-ray - THOUGHT I had one - didn't!! They are ordering.
[This message has been edited by mokita (edited 07-16-2003).]
twisten
07-16-2003, 11:10 PM
Hello everyone sorry I haven't posted in awhile, things haven't been real great but they are a bit better now. Anyway, Pippin I am so sorry to hear of your problems with your gyn and your mom. GET RID OF THE DOC, but unfortunately we can't get rid of the parents, lol just joking. I went for 20 years being told I had IBS before it turned out that I had crohns disease so don't give up, you know your body and you know when something isn't right. Mokita is right about interstitial cystitis(sp). That may be the culprit here. This is embarrassing but I have some bladder incontinence and was checked for that. Although I don't have it I did some reading on it and the symptoms are similar to what you are experiencing. As for your mom, I guess some people still think ALL doctors know best so she was maybe looking for a 2nd opinion?? Thats a tough one and I feel so bad for you. Definitely ask to see a urologist and at least find out their opinion. Take care, I'm wishing the best for you.
------------------
Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
------------------
Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
Jack Beanstalk
07-16-2003, 11:29 PM
Not to be crude,but the talk between your mom and the GI doc sounds like 2 ignorant people trying to assess something that neither really understands.You know,I can see an older person,like a parent getting confused about that dreaded word(addict),but a DR.?Opiodphobic all the way.The reason mom said nothing to the pain doc is cause he,s the"Dealer" or your "supplier"in her poor mind.Don,t get too upset,Pip,at your mom,you know deep down she means well,in her own way.All mothers have these strange ways of showing us that they love us,it,s that goofy doc that ain,t got a clue,it sounds like.Try not to let it get you too bad,maybe you can show her one of the articles in the CP links about dependance vs addiction.Be Cool.Jack B.
chrpps99
07-17-2003, 03:21 AM
Hey There Pippin,
This is a Little Long :eek:
I truly am sorry to hear what you had to go thru with the GI Dr and your Mom.. I know it probably devasted you to hear those words come out of her mouth.. Especially since she is probably the one that went to all those appt with you.. she really doesn't understand the difference between addiction and tolerance..If only she would walk a mile in your shoes.. I don't think any one that doesn't have CP can understand what we go thru..
Now as far as being DX or should I say NOT being DX'd.. It could be a number of things.. If you tried meds for a month and you still have the same pains, it is most likely not IBS (remember I am no Dr tho) I just went thru this with my GYN and Primary Dr. trying to figure out what the H*** was causing my pelvic pains. Mine were whole lot like you describe. Pain like a bladder infection, hurts to urinate, sometimes hurts with a bowel movement, mine is more a pulling tugging kind of pain, (could be like twisting)..Any ways back in 99 I had last baby via C-Sect. Dr that delivered baby said I had a lot of scar tissue from other two C-sect. anyways a year later I started having really bad periods, Dr suspected Endometriosis and Adenomyosis.. Had a Laproscopic Procedure done and it showed minimul Endo.. But I had Fibroids on Uterus, and because she suspected Adeno, I had partial Hyster.. When she did Hyster,, I was full of Adhesions, my uterus was adhered to my bladder, my ovary to back wall, my tubes to itself, also found adhesions on my bowels.. She removed all. I was good for about a 1 1/2 years.. Then the right ovary enlarged to the size of the bottom of Coke can. Had to have ovary removed. I had to have another laparotomy because of adhesions history, again Endo found very little bit. Again massive amounts of adhesions were found.. remvoed again... And now apprx 2 years later.. I started having the all too familiar pains.. Dr and Gyn ordered every test under the sun..And could find nothing, seen nothing, etc.. Just like you.. Can't find anything..I asked Gyn could it be the adhesions again. Well Gyn said that adhesions shouldn't be causing my pain..bull s*&* anyways (oh yeah her nurse told me I was addicted to pain meds) and no Dr would prescribe meds to me because of my history of pain meds usage. Finally my primary Dr said yes adhesions due cause pain, sometimes really severe pain..And said with my history that is what he DX was and that surgery would only create more problems for me, so I have to live with it, But he put me on the Patch and Hydrocodone for BT. He also asked me this question: Did you ever take a pain pill for a papaer cut??.. I said no.. He said well then you are not addicted.. So there you have it my history.. Just because a Dr cannot find the cause of your pain, doesn't mean that there isn't something causing it.. And if Lupron eased your pain while on it and a while after, I am thinking possibly Endo(Endo also causes Adhesions) and your Dr is right it would have shrunk it because you weren't feeding it Estrogen.. That is what feeds Endo. It could also be PCOS, IC,Like I said earlier there are just so many things that it could be, when it comes to pelvic pain....Oh yeah another thing, Adhesions do not show up on tests other than Laproscope or Laparotomy..
I know this was really long, but I hope I gave you some info that may be of some help to you.. Also gave you my history of Pelvic Problems.. If you ever want more info on Adhesions, feel free to post me and I would be more than happy to tell you more..I know how you feel not knowing what is causing it.. I have definetly been there just recently...
Listen I know you are very upset with your mom right now, but maybe just maybe she was trying to address her concerns, but she should have talked to you.. And she definetly shouldn't have talked to your Dr like you weren't even there.. I have to agree with Jack Beanstalk.. Definetly opiodaphobia Dr.. I hope you and your Mom work thru this, maybe someday she will understand..
Take Care
Pain Free Wishes
Sonya
This is a Little Long :eek:
I truly am sorry to hear what you had to go thru with the GI Dr and your Mom.. I know it probably devasted you to hear those words come out of her mouth.. Especially since she is probably the one that went to all those appt with you.. she really doesn't understand the difference between addiction and tolerance..If only she would walk a mile in your shoes.. I don't think any one that doesn't have CP can understand what we go thru..
Now as far as being DX or should I say NOT being DX'd.. It could be a number of things.. If you tried meds for a month and you still have the same pains, it is most likely not IBS (remember I am no Dr tho) I just went thru this with my GYN and Primary Dr. trying to figure out what the H*** was causing my pelvic pains. Mine were whole lot like you describe. Pain like a bladder infection, hurts to urinate, sometimes hurts with a bowel movement, mine is more a pulling tugging kind of pain, (could be like twisting)..Any ways back in 99 I had last baby via C-Sect. Dr that delivered baby said I had a lot of scar tissue from other two C-sect. anyways a year later I started having really bad periods, Dr suspected Endometriosis and Adenomyosis.. Had a Laproscopic Procedure done and it showed minimul Endo.. But I had Fibroids on Uterus, and because she suspected Adeno, I had partial Hyster.. When she did Hyster,, I was full of Adhesions, my uterus was adhered to my bladder, my ovary to back wall, my tubes to itself, also found adhesions on my bowels.. She removed all. I was good for about a 1 1/2 years.. Then the right ovary enlarged to the size of the bottom of Coke can. Had to have ovary removed. I had to have another laparotomy because of adhesions history, again Endo found very little bit. Again massive amounts of adhesions were found.. remvoed again... And now apprx 2 years later.. I started having the all too familiar pains.. Dr and Gyn ordered every test under the sun..And could find nothing, seen nothing, etc.. Just like you.. Can't find anything..I asked Gyn could it be the adhesions again. Well Gyn said that adhesions shouldn't be causing my pain..bull s*&* anyways (oh yeah her nurse told me I was addicted to pain meds) and no Dr would prescribe meds to me because of my history of pain meds usage. Finally my primary Dr said yes adhesions due cause pain, sometimes really severe pain..And said with my history that is what he DX was and that surgery would only create more problems for me, so I have to live with it, But he put me on the Patch and Hydrocodone for BT. He also asked me this question: Did you ever take a pain pill for a papaer cut??.. I said no.. He said well then you are not addicted.. So there you have it my history.. Just because a Dr cannot find the cause of your pain, doesn't mean that there isn't something causing it.. And if Lupron eased your pain while on it and a while after, I am thinking possibly Endo(Endo also causes Adhesions) and your Dr is right it would have shrunk it because you weren't feeding it Estrogen.. That is what feeds Endo. It could also be PCOS, IC,Like I said earlier there are just so many things that it could be, when it comes to pelvic pain....Oh yeah another thing, Adhesions do not show up on tests other than Laproscope or Laparotomy..
I know this was really long, but I hope I gave you some info that may be of some help to you.. Also gave you my history of Pelvic Problems.. If you ever want more info on Adhesions, feel free to post me and I would be more than happy to tell you more..I know how you feel not knowing what is causing it.. I have definetly been there just recently...
Listen I know you are very upset with your mom right now, but maybe just maybe she was trying to address her concerns, but she should have talked to you.. And she definetly shouldn't have talked to your Dr like you weren't even there.. I have to agree with Jack Beanstalk.. Definetly opiodaphobia Dr.. I hope you and your Mom work thru this, maybe someday she will understand..
Take Care
Pain Free Wishes
Sonya
chriztene
07-17-2003, 06:24 AM
Karen and Pippin,
Thanks Karen for looking back for Pippin.. I was reading your post in dismay..I had the exact condition and it was horrible, painful, and quite debilitating..
I started going to the emergency room 'out of the blue' with horrible twisting bladder pain..The er doctors referred me to an obgyn and he referred me to a urologist.
Within one week of seeing the Uro I was diagnosed. There is an Interstitial Cystitis website with a vast amount of information regarding this disease. If I am not mistaken, this disease has just been added to the disability list.
I would definately advise you to seek out a urolgist whom is familiar with I.C. I have been told by my Urologist, women have suffered for YEARS before getting the proper diagnosis.
There are many procedures the uro can try with you as well as medication. I.C. can go into remission or can stay for the long term. Your Uro will inform you and refer you out to pain management if need be.
In regard to your parents, well, I am not sure how old you are and if you still live at home? Let me explain this by using myself here; In the beginning prior to me being diagnosed, my mother was always over to help me, take me to the doctor, pick up medications, etc. I eventually noticed a strain on her face every time I was in bed not able to get out and started realizing this was taking a toal on my mother as well:*(
What I started doing was going to all the doctors by myself or with my daughter, getting my own medications, and not mentioning my conditon around her unless she brought it up. I am a mother and I know what it feels like to watch your child suffer and I didnt want to bring any more grief on my mother than I had to.
I sympathize with you Pippin and relate to your suffering.. I, too, could see where you Mother might be at her wits end and is succeptable to any answer the doctor might give her/you. When its your child suffering its worse than if it were you yourself suffering..Something to think about.
I really hope you get a proper diagnosis as It must be horrible NOT knowing what is wrong. If you will go over to the Interstitial Cystitis website, you will find all the info you need. I wish you the best,
Chriztene
Thanks Karen for looking back for Pippin.. I was reading your post in dismay..I had the exact condition and it was horrible, painful, and quite debilitating..
I started going to the emergency room 'out of the blue' with horrible twisting bladder pain..The er doctors referred me to an obgyn and he referred me to a urologist.
Within one week of seeing the Uro I was diagnosed. There is an Interstitial Cystitis website with a vast amount of information regarding this disease. If I am not mistaken, this disease has just been added to the disability list.
I would definately advise you to seek out a urolgist whom is familiar with I.C. I have been told by my Urologist, women have suffered for YEARS before getting the proper diagnosis.
There are many procedures the uro can try with you as well as medication. I.C. can go into remission or can stay for the long term. Your Uro will inform you and refer you out to pain management if need be.
In regard to your parents, well, I am not sure how old you are and if you still live at home? Let me explain this by using myself here; In the beginning prior to me being diagnosed, my mother was always over to help me, take me to the doctor, pick up medications, etc. I eventually noticed a strain on her face every time I was in bed not able to get out and started realizing this was taking a toal on my mother as well:*(
What I started doing was going to all the doctors by myself or with my daughter, getting my own medications, and not mentioning my conditon around her unless she brought it up. I am a mother and I know what it feels like to watch your child suffer and I didnt want to bring any more grief on my mother than I had to.
I sympathize with you Pippin and relate to your suffering.. I, too, could see where you Mother might be at her wits end and is succeptable to any answer the doctor might give her/you. When its your child suffering its worse than if it were you yourself suffering..Something to think about.
I really hope you get a proper diagnosis as It must be horrible NOT knowing what is wrong. If you will go over to the Interstitial Cystitis website, you will find all the info you need. I wish you the best,
Chriztene
HikingFan
07-17-2003, 06:42 AM
Hey Pippin
Ironically enough, I had a simliar experience with my mom this AM, only it didn't happen in front of the doc. I was telling her about my facet joint injections I had done for the first time Monday, and mentioned how awful I felt right before the procedure since they wouldn't let me take any pain meds 24-hours before the procedure (the sweaty, goose-bumps, yucky feeling you get when you suddenly stop taking opiates).
She told me very adamantly that she was worried I was addicted, etc, and it really pissed me off. I know that she doesn't understand the tolerance vs. addiction things, and she was just probably concerned about hearing how nasty the withdrawal symptoms were, but man, did I get mad at her throwing around the word "addiction" so carelessly. Does she think I would actually take this stuff for fun, or go through painful procedures like the facet joint injections if I didn't have to?? Its hard explaining all this in a calm manner to someone who is very anti-medicine (she is the kind of person who thinks that using oxycodone is about the same as smoking crack...to her, there is no distinction...a drug is a drug is a drug, ya know?) I got off the phone so mad!! GRRRRRR!
Anyhow, I just wanted to give you some support and let you know that I feel ya!
Love,
Sara
Ironically enough, I had a simliar experience with my mom this AM, only it didn't happen in front of the doc. I was telling her about my facet joint injections I had done for the first time Monday, and mentioned how awful I felt right before the procedure since they wouldn't let me take any pain meds 24-hours before the procedure (the sweaty, goose-bumps, yucky feeling you get when you suddenly stop taking opiates).
She told me very adamantly that she was worried I was addicted, etc, and it really pissed me off. I know that she doesn't understand the tolerance vs. addiction things, and she was just probably concerned about hearing how nasty the withdrawal symptoms were, but man, did I get mad at her throwing around the word "addiction" so carelessly. Does she think I would actually take this stuff for fun, or go through painful procedures like the facet joint injections if I didn't have to?? Its hard explaining all this in a calm manner to someone who is very anti-medicine (she is the kind of person who thinks that using oxycodone is about the same as smoking crack...to her, there is no distinction...a drug is a drug is a drug, ya know?) I got off the phone so mad!! GRRRRRR!
Anyhow, I just wanted to give you some support and let you know that I feel ya!
Love,
Sara
mokita
07-17-2003, 07:44 AM
Good Morning Pippin!
I was just reading thru everyone's kind posts to you..and I got to thinking (uh-oh) - they're right. She really does just care and worry. What she did was wrong and hurtful. Perhaps you can put your anger and hurt aside long enough to explain that to her. Print the info that was suggested. Help her understand. If you think she won't hush long enough to listen and Truly Hear you? Then, write it down... give it to her and ask her kindly to read it while you wait. (I KNOW my mom wouldn't be quiet long enough for me to say "I want to talk to you! jibber-jabber... http://www.healthboards.com/ubb/gabby.gif
Let us know how you're feeling. It's crummy to have those who love us add to the mix of pain & ignorance.
Good luck!
Karen
I was just reading thru everyone's kind posts to you..and I got to thinking (uh-oh) - they're right. She really does just care and worry. What she did was wrong and hurtful. Perhaps you can put your anger and hurt aside long enough to explain that to her. Print the info that was suggested. Help her understand. If you think she won't hush long enough to listen and Truly Hear you? Then, write it down... give it to her and ask her kindly to read it while you wait. (I KNOW my mom wouldn't be quiet long enough for me to say "I want to talk to you! jibber-jabber... http://www.healthboards.com/ubb/gabby.gif
Let us know how you're feeling. It's crummy to have those who love us add to the mix of pain & ignorance.
Good luck!
Karen
grizzk62
07-17-2003, 10:02 AM
Hey Pippin,
I'm so sory what you went through. It took my parents a few years to come around completely to the dependance issue. They really believed for a long time that I was just addicted to those meds. Of course they also just couldn't understand the amount of pain I suffered on a dayly basis. I truely believe no one can understand the pain we CPers go thru unless they have been there.
I have IBS and from what I have been told many people with CP do have IBS because the pain signals interfer with the same signals that our colon depends on to function normally. I have IBS as long as I have had CP ever since I broke my back in 1985. Now this may not be your problem. But I thought that I might add what my docs have told me about my condition.
I do pray fro you and your family. I feel like I have gotten to know you over the last couple of months from all the info and sharing that you have done. I read last night the letter to the women senators and I thought that was wonderful. But I can't find it this morning was it deleted or banned or what ever. I would love to have a copy so that I may send It to my legislators. any how take care....
Matt
I'm so sory what you went through. It took my parents a few years to come around completely to the dependance issue. They really believed for a long time that I was just addicted to those meds. Of course they also just couldn't understand the amount of pain I suffered on a dayly basis. I truely believe no one can understand the pain we CPers go thru unless they have been there.
I have IBS and from what I have been told many people with CP do have IBS because the pain signals interfer with the same signals that our colon depends on to function normally. I have IBS as long as I have had CP ever since I broke my back in 1985. Now this may not be your problem. But I thought that I might add what my docs have told me about my condition.
I do pray fro you and your family. I feel like I have gotten to know you over the last couple of months from all the info and sharing that you have done. I read last night the letter to the women senators and I thought that was wonderful. But I can't find it this morning was it deleted or banned or what ever. I would love to have a copy so that I may send It to my legislators. any how take care....
Matt
oceanview88
07-17-2003, 10:55 AM
Hi Pippin, Have you had a colonoscopy. Your symptoms and history sound exactly like my friends wife, she was bounced from GYN to GI several times, same DX's and similar pain pattern. They thought cysts, then endo, then dioverticulitis sp?.Ulcerated colitis. Any of these have similar pain patterns.
After the big scope they realized the DVT was the problem, her lower bowels were pitted and ulcerated, after a month long course of several antibiotics they went in and removed a section of her intestines. THey didn't have to use a colostomy bag while things healed, and did the surgery through 3 holes and a small incision right below the belly button.
Although it's considered minimally invasive they still put their entire hand inside through the incision and manually check the intestines.
It definitely sounds like you need a fresh perspective from a new GI doc or general surgeon. But your post certainly sounds very familiar. It also sounds like your mom found someone willing to confirm her own fears. She didn't ask the PM because she knew she wouldn't get the answer she wanted to hear.
It's an easy answer to a tough problem. You may need to get outside the present loop of docs because if your in a referral system those concerns will end up in your primary docs file. I'm not trying to scare you it's just the way docs work. If they can't find the problem or cure it's an easy answer and an easy way to dismiss a patient.
Strangest thing just happened, the girls husband I was talking about just sent me an IM. By the way, she's doing great now, pain free and no colostomy bag. Has anyone tried courses of antibiotics for DVT? what was your response to the antiB's?
There is an answer but once someone throws out the A word it's time to find a new circle of docs.IMO
Take care, Ocean
After the big scope they realized the DVT was the problem, her lower bowels were pitted and ulcerated, after a month long course of several antibiotics they went in and removed a section of her intestines. THey didn't have to use a colostomy bag while things healed, and did the surgery through 3 holes and a small incision right below the belly button.
Although it's considered minimally invasive they still put their entire hand inside through the incision and manually check the intestines.
It definitely sounds like you need a fresh perspective from a new GI doc or general surgeon. But your post certainly sounds very familiar. It also sounds like your mom found someone willing to confirm her own fears. She didn't ask the PM because she knew she wouldn't get the answer she wanted to hear.
It's an easy answer to a tough problem. You may need to get outside the present loop of docs because if your in a referral system those concerns will end up in your primary docs file. I'm not trying to scare you it's just the way docs work. If they can't find the problem or cure it's an easy answer and an easy way to dismiss a patient.
Strangest thing just happened, the girls husband I was talking about just sent me an IM. By the way, she's doing great now, pain free and no colostomy bag. Has anyone tried courses of antibiotics for DVT? what was your response to the antiB's?
There is an answer but once someone throws out the A word it's time to find a new circle of docs.IMO
Take care, Ocean
Shammy24
07-18-2003, 09:23 PM
I can relate to your frustrated feelings of a parent thinking you're addicted!! My dad thinks I take entirely too much medication and that despite knowing I have a LONG list of painful diseases and conditions, he seems to think I can wish it away or whatever!!! Grrrrr!
I had pelvic pain off and on for many years. On my 25th birthday, I had a partial hysterectomy; uterus and cervix only were removed. Pain went away, but a VERY different and MUCH WORSE pain replaced it a few years down the road. *I* was absolutely positive that the pain was coming from the bladder, yet the GYN assured me it was due to a large mass on the ovary; small basketball sized cyst. He'd planned laproscopic surgery, but quickly changed to laparotamy when the scope revealed that besides the massive cyst, I had tons upon tons of adhesions. They'd encompassed parts of the bowel, the ovary was becoming twisted upon itself (which is a medical emergency in itself!) and the whole mess was mangled atop of, and putting pressure on, the bladder. Left ovary and countless adhesions were removed. Pain seemed to improve only slightly. Just IMAGINE my having this HUGE, massive cyst in there, with scars on the ovary from dozens of previous ones that had grown and burst, yet that was not the pain that was bothering me in particular!!!
Things were such a mess inside that during this surgery, my right ovary couldn't even be found! The GYN finally assumed after a long search for it, that it'd been removed in the hysterectomy surgery and I'd just forgotten to mention it.
Within a year, the pain had grown so intense that I stayed double over and screaming much of the time. I honestly thought I was losing my mind as the pain was so overwhelming, and I had always been so 'tough' before; didn't even have/want pain meds after 2 days post surgery! Ultrasound revealed the 'missing' ovary had resurfaced and also had a large cyst and massive adhesions on it. Surgery again, but no improvement in the main area of the pain!!! Also, had a bad post-op infection from the drain becoming clogged before it was removed, which backed up the drain hose and created a perfect site for bacteria to grow inside the abdominal lining. That landed me another five days in the hospital with anti-biotic IV's, but thank heaven - pain shots every 4 hours too! Despite it being Demerol administered straight in to the IV line, it did nothing to phase the pain!! Finally, the GYN agreed it couldn't be all 'female' related, couldn't be a bladder infection either due to the massive doses of anti-biotics given me, etc. I set up an appt. with a Urologist then.
The Uro had a "I'm better than any Dr. that ever lived before me or will after me", as did his staff about him. He told me I *probably* had adhesions again and I'd have to suffer through it for 3months, at which time he would go in and clean up the other doc's mess. Mind you I was only 2 weeks post op from ovary removal #2, yet he said it was massive adhesions from this surgery!
I see now the 3rd Uro then (this scenario began with a Uro before the GYN) whom my LPN cousin had gotten me in to see. After all the massive suffering, the surgeries (which I did need), and being suicidal, this Uro told me within five minutes what was wrong with me: Interstitial Cystitis!! It's a inflammatory, auto-immune, bladder disease. The pain with it (for those who do have severe pain with this disease) has been PROVEN by a medical univ.'s study, to be equal to or even greater than last stage cancer pain!! No wonder I'd been suffering SOOO much and for SOOO long. The ovary removal surgeries had greatly increased the pain cycle due to the bladder being flopped back and forth during surgeries to clean off adhesions!! I had surgery at the end of that week to fully diagnose the IC. The bladder is greatly inflated with water, water withdrawn, and the bleeding and scabbing sores of IC can then - and ONLY in this way!! - be seen!!! There is NO other test to be done to fully prove or disprove this disease!!! Having a cystoscope exam in the doc's office is not good enough as the bladder has to be stretched to reveal this microscopic lesions!!
By the way, mostly women get this disease and hormones can play a VERY significant part in treating the disease!! The pain feels very similar to a bladder infection, but the worst one you've ever had or can imagine, in your lifetime! Some people have ulcers in the bladder, along with the sores, (I do) which is considered the worst stage of the disease. Pain can be light or suicidal, and can come and go! A very unusual symptom I noticed way in the beginning of this 2 year plus ordeal was a great sensitivity around the naval! ODD! Even today, years later, my belly button is very sensitive to the touch and there's no way under God's green Earth I can ever again wear clothes with a button in the waistband due to this!
Look up Interstitial Cystitis with "Google" search engine, and you'll find lots of wonderful information. At least you can see if the listed symptoms relate in any way to what you're sensing. I was first told by my PCP this pain was IBS spasms!!! Who knows if I'd been dx'd way back then if the IC would have gotten to the advanced stage it's now in?? Even though I told the first 2 Uro's I was there to have IC either ruled out or confirmed, they would not even discuss the possibility!
My email is sherrysham@yahoo.com, if you'd like to email me - if I can be of any help! Hugs and prayers with you as I truly, first hand, know exactly what you're going through!! Just because a Uro once asked my Dad if he'd been checked before for IC, he assumes he has it and that I'm a wuzz cause I need strong pain meds for mine!!!!
Shammy24
------------------
I'm so confused that I don't know whether to scratch my watch, or wind my butt! :)
CNMP Patient for 8+ yrs.
I had pelvic pain off and on for many years. On my 25th birthday, I had a partial hysterectomy; uterus and cervix only were removed. Pain went away, but a VERY different and MUCH WORSE pain replaced it a few years down the road. *I* was absolutely positive that the pain was coming from the bladder, yet the GYN assured me it was due to a large mass on the ovary; small basketball sized cyst. He'd planned laproscopic surgery, but quickly changed to laparotamy when the scope revealed that besides the massive cyst, I had tons upon tons of adhesions. They'd encompassed parts of the bowel, the ovary was becoming twisted upon itself (which is a medical emergency in itself!) and the whole mess was mangled atop of, and putting pressure on, the bladder. Left ovary and countless adhesions were removed. Pain seemed to improve only slightly. Just IMAGINE my having this HUGE, massive cyst in there, with scars on the ovary from dozens of previous ones that had grown and burst, yet that was not the pain that was bothering me in particular!!!
Things were such a mess inside that during this surgery, my right ovary couldn't even be found! The GYN finally assumed after a long search for it, that it'd been removed in the hysterectomy surgery and I'd just forgotten to mention it.
Within a year, the pain had grown so intense that I stayed double over and screaming much of the time. I honestly thought I was losing my mind as the pain was so overwhelming, and I had always been so 'tough' before; didn't even have/want pain meds after 2 days post surgery! Ultrasound revealed the 'missing' ovary had resurfaced and also had a large cyst and massive adhesions on it. Surgery again, but no improvement in the main area of the pain!!! Also, had a bad post-op infection from the drain becoming clogged before it was removed, which backed up the drain hose and created a perfect site for bacteria to grow inside the abdominal lining. That landed me another five days in the hospital with anti-biotic IV's, but thank heaven - pain shots every 4 hours too! Despite it being Demerol administered straight in to the IV line, it did nothing to phase the pain!! Finally, the GYN agreed it couldn't be all 'female' related, couldn't be a bladder infection either due to the massive doses of anti-biotics given me, etc. I set up an appt. with a Urologist then.
The Uro had a "I'm better than any Dr. that ever lived before me or will after me", as did his staff about him. He told me I *probably* had adhesions again and I'd have to suffer through it for 3months, at which time he would go in and clean up the other doc's mess. Mind you I was only 2 weeks post op from ovary removal #2, yet he said it was massive adhesions from this surgery!
I see now the 3rd Uro then (this scenario began with a Uro before the GYN) whom my LPN cousin had gotten me in to see. After all the massive suffering, the surgeries (which I did need), and being suicidal, this Uro told me within five minutes what was wrong with me: Interstitial Cystitis!! It's a inflammatory, auto-immune, bladder disease. The pain with it (for those who do have severe pain with this disease) has been PROVEN by a medical univ.'s study, to be equal to or even greater than last stage cancer pain!! No wonder I'd been suffering SOOO much and for SOOO long. The ovary removal surgeries had greatly increased the pain cycle due to the bladder being flopped back and forth during surgeries to clean off adhesions!! I had surgery at the end of that week to fully diagnose the IC. The bladder is greatly inflated with water, water withdrawn, and the bleeding and scabbing sores of IC can then - and ONLY in this way!! - be seen!!! There is NO other test to be done to fully prove or disprove this disease!!! Having a cystoscope exam in the doc's office is not good enough as the bladder has to be stretched to reveal this microscopic lesions!!
By the way, mostly women get this disease and hormones can play a VERY significant part in treating the disease!! The pain feels very similar to a bladder infection, but the worst one you've ever had or can imagine, in your lifetime! Some people have ulcers in the bladder, along with the sores, (I do) which is considered the worst stage of the disease. Pain can be light or suicidal, and can come and go! A very unusual symptom I noticed way in the beginning of this 2 year plus ordeal was a great sensitivity around the naval! ODD! Even today, years later, my belly button is very sensitive to the touch and there's no way under God's green Earth I can ever again wear clothes with a button in the waistband due to this!
Look up Interstitial Cystitis with "Google" search engine, and you'll find lots of wonderful information. At least you can see if the listed symptoms relate in any way to what you're sensing. I was first told by my PCP this pain was IBS spasms!!! Who knows if I'd been dx'd way back then if the IC would have gotten to the advanced stage it's now in?? Even though I told the first 2 Uro's I was there to have IC either ruled out or confirmed, they would not even discuss the possibility!
My email is sherrysham@yahoo.com, if you'd like to email me - if I can be of any help! Hugs and prayers with you as I truly, first hand, know exactly what you're going through!! Just because a Uro once asked my Dad if he'd been checked before for IC, he assumes he has it and that I'm a wuzz cause I need strong pain meds for mine!!!!
Shammy24
------------------
I'm so confused that I don't know whether to scratch my watch, or wind my butt! :)
CNMP Patient for 8+ yrs.
Flash13
07-27-2003, 03:14 PM
Hi Pippin31,
What ever became of this situation? Did you and your mom talk about it and clear things up? My parents were concerned about me as well. Especially since I graduated with a degree in Criminal Justice. They feared it may come back and bite me in the backside :D
I did the same thing with them, we sat on the computer together looking things up trying to understand what I was going through and what my future may hold. There are tooo many women out there in our situation. It’s sad...it seems as though there is a pattern between women and doctors making them feel like they are hysterical females!!!
I have to take pain meds in order to live a semi-normal life. I questioned the addiction thing too and to a certain degree still worry. Especially for my future’s sake with criminal law. I can only hope it doesn’t ruin all I have worked for.
Well, I hope things with your mom got straitened out. I am sure it was out of love and fear that she asked the doctor about being an addict. And if I were you, I would bolt as fast as I could away from THAT doctor!!!
Take care and look forward to talking to you,
Flash
What ever became of this situation? Did you and your mom talk about it and clear things up? My parents were concerned about me as well. Especially since I graduated with a degree in Criminal Justice. They feared it may come back and bite me in the backside :D
I did the same thing with them, we sat on the computer together looking things up trying to understand what I was going through and what my future may hold. There are tooo many women out there in our situation. It’s sad...it seems as though there is a pattern between women and doctors making them feel like they are hysterical females!!!
I have to take pain meds in order to live a semi-normal life. I questioned the addiction thing too and to a certain degree still worry. Especially for my future’s sake with criminal law. I can only hope it doesn’t ruin all I have worked for.
Well, I hope things with your mom got straitened out. I am sure it was out of love and fear that she asked the doctor about being an addict. And if I were you, I would bolt as fast as I could away from THAT doctor!!!
Take care and look forward to talking to you,
Flash
Hailey_starz
09-07-2003, 04:08 AM
Your symptoms sounds so similar to mine. I have IBS and Interstitial Cystitis. But I also had that "twisting" feeling. My gyn did a laproscopy and found my ovary was twisting itself, which was the cause of the bad lower abdominal pains. My mother also had this twisting pain, which turned out the be ovarian cancer. Sorry for sounding so grim. It may be absolutely nothing in your case, but it's better to be safe, than sorry. I would find another doctor, and get a second opinion.
deered
09-08-2003, 02:10 PM
Pippin,
I know exactly how you feel. Except in my case it is my husband. He says I don't have pain I'm just addicted to pain killers. He has never understood my pain and he never will. Those who do not have pain do not understand what it is like. i wish for one day he could walk in my shoes that would be all it would take for all these non-supporting peopl in my family to get off my ass. i catch hell from everyone in my family and those that don't give me hell ask me for my medicine. Which I say NO!!!!! because I can't cut my self short because withdrawl is worse that the pain. I have been through that too my brother stole my meds one time and almost got me discharged from the DR. It really makes me sick to know that the people you love and need the most are never there for you and total strangers on the internet act like they care more about you than your own family. I am so scared that my pain will never go away I have almost left my husband because I am sick of being called an addict. Like I said if they could walk in my shoes for 15 minutes they would change their mind on how they think of me real fast. I am still learning how to use this site so bare with me. This is only my 4th reply and no one has replied back to me. But I haven't asked any questions either. Good Luck to you. Don't let your mom get you down she just don't understand. As I said before Those people that have never had pain will never understand what it is like for those of us that do have it day in and day out.
I know exactly how you feel. Except in my case it is my husband. He says I don't have pain I'm just addicted to pain killers. He has never understood my pain and he never will. Those who do not have pain do not understand what it is like. i wish for one day he could walk in my shoes that would be all it would take for all these non-supporting peopl in my family to get off my ass. i catch hell from everyone in my family and those that don't give me hell ask me for my medicine. Which I say NO!!!!! because I can't cut my self short because withdrawl is worse that the pain. I have been through that too my brother stole my meds one time and almost got me discharged from the DR. It really makes me sick to know that the people you love and need the most are never there for you and total strangers on the internet act like they care more about you than your own family. I am so scared that my pain will never go away I have almost left my husband because I am sick of being called an addict. Like I said if they could walk in my shoes for 15 minutes they would change their mind on how they think of me real fast. I am still learning how to use this site so bare with me. This is only my 4th reply and no one has replied back to me. But I haven't asked any questions either. Good Luck to you. Don't let your mom get you down she just don't understand. As I said before Those people that have never had pain will never understand what it is like for those of us that do have it day in and day out.
grizzk62
09-08-2003, 09:05 PM
Deered,
Hey there girl,
I'm so sorry that your husband the person that we rely on the most in this battle is one that is adding to your struggle. You deserve alot better than to be called a drug addict. I too have gone through alot of family members and friends over me being in PM. I love it when they ask for a couple of your pills like you really don't need that many and should be able to spare a few right we're friends. RIGHT. They just don't get it. I'm lucky tho as well. I have chosen to surround myself with the family and friends that do get it. I have a wondeful wife of 21 years and terrific parents and in-laws. And I do have a few but rare true friends. My only suggestion is this. Drop the people that don't care and just want to use you and surround yourself with the people that are there for you. I believe this very strongly. what we have to endure everyday is hard enough. We just don't have the time or the energy for anything else. Do take care and if there is anything that I can do for you let me know take good care and WELCOME to the boards by the way.....
Matt
[This message has been edited by grizzk62 (edited 09-08-2003).]
Hey there girl,
I'm so sorry that your husband the person that we rely on the most in this battle is one that is adding to your struggle. You deserve alot better than to be called a drug addict. I too have gone through alot of family members and friends over me being in PM. I love it when they ask for a couple of your pills like you really don't need that many and should be able to spare a few right we're friends. RIGHT. They just don't get it. I'm lucky tho as well. I have chosen to surround myself with the family and friends that do get it. I have a wondeful wife of 21 years and terrific parents and in-laws. And I do have a few but rare true friends. My only suggestion is this. Drop the people that don't care and just want to use you and surround yourself with the people that are there for you. I believe this very strongly. what we have to endure everyday is hard enough. We just don't have the time or the energy for anything else. Do take care and if there is anything that I can do for you let me know take good care and WELCOME to the boards by the way.....
Matt
[This message has been edited by grizzk62 (edited 09-08-2003).]
Disavowed
09-08-2003, 09:26 PM
Deered you are so right about others walking a mile in our shoes...my husband about this time last year was telling me that whenever he had pain that he "just put it out of his head"....and although he came short of calling me an addict, I know he thought it....well, what they say about what goes around in life comes around is true...he never did understand what pain was until he was in a car accident in March...he now takes pain meds and muscle relaxers....and has seen different doctors because he "can't stand the pain"..isn't that interesting? I would never have wished that on him, but I did tell him when he was giving me a hard time that he had better be careful, because sometimes things can come back as in pay back.....he now knows a little of what I go through...but I don't think that it makes him anymore sympathetic...so my theory is ..if a person lacks empathy, they will never have it...they just aren't capable of it even when they too are burdened with similar circumstances...what happens is that they just feel sorry for themselves, not sympathetic to another persons pain.....I too have felt like packing up and moving on...so I know where you are coming from Deered
twisten
09-08-2003, 10:18 PM
I guess I'm one of the lucky ones to, my family has been very supportive. I was kind of scared of my dad finding out I would be on pain meds because he is the type that won't even take a tylenol for a headache. For example he got hit right across the side of the head once when a winch line on a truck broke and he wouldn't let the hospital give him a thing. He got stitched all up and came home!! BUT he has been great. He has done more reading on the internet on my conditions than even I have (and I think I live on here). My friends aren't as understanding, one told me I could probably work if I wasn't taking pain pills (I was working at this time!!) and another hinted around that I should give her some. Of course I didn't and no longer call either of these people friends. Even though I have wonderful support from my family, I still get most of it on here. Solely because you all have been there and truly understand.
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Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
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Hmm where should I begin?? Crohn's disease, sacroiilitis-crohn's related, scoliosis, spina bifida occulta, chronic myofascial pain, tmjd and migraines. Still waiting for bone scan and bone density test to tell me what else is wrong with me!! Too many surgeries to list!!
deered
09-09-2003, 01:30 PM
Thank you everyone for your responses I feel like I belong here. I am still trying to figure out how to work the site. It really does suck i love my husband more that life itself but I am tired of the accusations all the time. I hate that your husband had to get hurt to somewhat realize what you go through but they will never fully understand. Only those that have it can relate.
turtleeni2
09-09-2003, 05:24 PM
I have to admit, I too probably misjudged quite a few on pain meds in my time (I am a pharmacy tech). But now knowing exactly what most of these people are going through, I feel kinda awful. Some of the customers though, you can just tell they have bad drug problems. But I would often wonder about some of the others that were continually on narcotics.
My doctor has put me on oxycontin 10mg twice daily with vicodin for bt pain about 3 weeks ago. He was very informative and talked over with me a few times that I should not tell everyone that I am taking this medication. Don't tell people you don't really know for obvious theft reasons. But, also that some people feel very weird towards these types of meds. He told me some doctors, pharmacists, friends, family, etc. may have strong opinions about this. My fiance was with me, so he knows about the discussion and he is totally comfortable with me taking it, especially since I had such little pain for like 2 weeks!!! I was happy too :) Except for some side effects. Gave me terrible insomnia and still does sometimes and its taking a toll on me and am missing alot of work. I seem to have more pains now though too starting over this weekend, so it may not be working as well for me anymore :(
Anyways (got a little side-tracked there, sorry hehe) a couple days after I began taking the oxycontin, my Mom called me to find out how my Doctor visit went and if they know what's the problem. Well.....right after I go "he has me on oxycontin" (I don't know if I even got to finish the word lol) she got all excited and was like "WHAT??? You can't take that!!!" At first I thought maybe there was some allergy I had that I didn't know about and when I asked why she said that it does horrible things to people!!! She must have watched one of those investigative reports or something. I just totally did not expect her to react that way, in spite of what the Doctor was trying to explain to me about how others look at it. Was just shocked that it was my Mom of all people hehe!
Well I have explained to her that if taken the right way for pain, it is very effective.
Well that's my story :)
My doctor has put me on oxycontin 10mg twice daily with vicodin for bt pain about 3 weeks ago. He was very informative and talked over with me a few times that I should not tell everyone that I am taking this medication. Don't tell people you don't really know for obvious theft reasons. But, also that some people feel very weird towards these types of meds. He told me some doctors, pharmacists, friends, family, etc. may have strong opinions about this. My fiance was with me, so he knows about the discussion and he is totally comfortable with me taking it, especially since I had such little pain for like 2 weeks!!! I was happy too :) Except for some side effects. Gave me terrible insomnia and still does sometimes and its taking a toll on me and am missing alot of work. I seem to have more pains now though too starting over this weekend, so it may not be working as well for me anymore :(
Anyways (got a little side-tracked there, sorry hehe) a couple days after I began taking the oxycontin, my Mom called me to find out how my Doctor visit went and if they know what's the problem. Well.....right after I go "he has me on oxycontin" (I don't know if I even got to finish the word lol) she got all excited and was like "WHAT??? You can't take that!!!" At first I thought maybe there was some allergy I had that I didn't know about and when I asked why she said that it does horrible things to people!!! She must have watched one of those investigative reports or something. I just totally did not expect her to react that way, in spite of what the Doctor was trying to explain to me about how others look at it. Was just shocked that it was my Mom of all people hehe!
Well I have explained to her that if taken the right way for pain, it is very effective.
Well that's my story :)