jackalack
01-31-2003, 10:03 PM
hi,
I am 24yrs. old and have been diagnosed with both interstitial cystitis, as well as endometriosis. I was diagnosed at 23yrs. and have been dealing with nothing but pain since! I am soooo frusterated! My husband and I have been married less than two years... it has been nothing but a giant nightmare! It has been so hard having to deal with all of this... As you can imagine, I have been to doctor after doctor after doctor looking for some help. The reason I have been to so many, is that whenever I go to someone who doesn't know how to help me, there "solution" is that it is all in my head, and that I need to see a psychologist!! They almost had me believing that it was.... but the pain is so real! I have a wonderful uriologist, who is very sympathetic... but even he doesn't know what to do. I thought that maybe if I could find someone else to "talk" to, that it might help. (Actually, my mother-in-law suggested it). She was the one also responsible for my "diagnosis". You see, she gave me a book written by Dr. Gilepsy on Interstitial cystites. She kept insisting that my symptoms matched the book... even after the cystoscopy I am still not so sure. I mean, my pain seems to be different than what most interstitial cystitis patients experience. It doesn't help that I am also dealing with endometriosis. Anyway, I could write a book... I don't know if you can "help" me or not. But I am interested in finding someone with a sympathetic ear... I am just sooo tired..... I spend much of my time in tears of frustration! My husband and I want to start a family.. but the doctors keep telling us to put it off.. until they can "fix" my problem! They believe that pregnancy will only exacerbate things!! I am so confused... I just want to feel normal again. I don't know ANYONE else who knows what it feels like to go through this at such a young age!! Not even my husband really understands! I am beginning to believe that it just might be the Lord's will that I never find a cure... I have tried sooo many things already including: Elmiron, Depo Lupron, surgery, anti-depresants and birth contol pills... but nothing seems to give me relief. And I refuse to live the rest of my life doped up on narcotics and pain killers! My last gyn visit, I was told that there is nothing more they can do for me, and that they suggest that I go to a special chronic pelvic pain clinic 3 1/2hrs. away in Chapel Hill. I am just get soo tired of building up hope for a cure...or even an accurate diagnonoses, only to have it all come crashing down! I want to believe that this Clinic might be the answer I have been looking for... but it is so depressing to go through all the different uncomfortable tests. procedures, sticks, and surgerys only to be told that , "We're sorry, but everything looks normal"!!!! It is actually GOOD to hear the words that, "We have found something..." just to know that it really ISN'T "all in my head"!!! If only it were that simple....
jackalack
ps
if you want to write me backyou can just reply to this subject for others to check out and see as well!!
[This message has been edited by moderator1 (edited 02-01-2003).]
I am 24yrs. old and have been diagnosed with both interstitial cystitis, as well as endometriosis. I was diagnosed at 23yrs. and have been dealing with nothing but pain since! I am soooo frusterated! My husband and I have been married less than two years... it has been nothing but a giant nightmare! It has been so hard having to deal with all of this... As you can imagine, I have been to doctor after doctor after doctor looking for some help. The reason I have been to so many, is that whenever I go to someone who doesn't know how to help me, there "solution" is that it is all in my head, and that I need to see a psychologist!! They almost had me believing that it was.... but the pain is so real! I have a wonderful uriologist, who is very sympathetic... but even he doesn't know what to do. I thought that maybe if I could find someone else to "talk" to, that it might help. (Actually, my mother-in-law suggested it). She was the one also responsible for my "diagnosis". You see, she gave me a book written by Dr. Gilepsy on Interstitial cystites. She kept insisting that my symptoms matched the book... even after the cystoscopy I am still not so sure. I mean, my pain seems to be different than what most interstitial cystitis patients experience. It doesn't help that I am also dealing with endometriosis. Anyway, I could write a book... I don't know if you can "help" me or not. But I am interested in finding someone with a sympathetic ear... I am just sooo tired..... I spend much of my time in tears of frustration! My husband and I want to start a family.. but the doctors keep telling us to put it off.. until they can "fix" my problem! They believe that pregnancy will only exacerbate things!! I am so confused... I just want to feel normal again. I don't know ANYONE else who knows what it feels like to go through this at such a young age!! Not even my husband really understands! I am beginning to believe that it just might be the Lord's will that I never find a cure... I have tried sooo many things already including: Elmiron, Depo Lupron, surgery, anti-depresants and birth contol pills... but nothing seems to give me relief. And I refuse to live the rest of my life doped up on narcotics and pain killers! My last gyn visit, I was told that there is nothing more they can do for me, and that they suggest that I go to a special chronic pelvic pain clinic 3 1/2hrs. away in Chapel Hill. I am just get soo tired of building up hope for a cure...or even an accurate diagnonoses, only to have it all come crashing down! I want to believe that this Clinic might be the answer I have been looking for... but it is so depressing to go through all the different uncomfortable tests. procedures, sticks, and surgerys only to be told that , "We're sorry, but everything looks normal"!!!! It is actually GOOD to hear the words that, "We have found something..." just to know that it really ISN'T "all in my head"!!! If only it were that simple....
jackalack
ps
if you want to write me backyou can just reply to this subject for others to check out and see as well!!
[This message has been edited by moderator1 (edited 02-01-2003).]
Sponsor
Autumn Angel
02-01-2003, 12:43 AM
Grrr stupid Docs! If its all in your head why are they telling you to put off starting a family?? So they must see something and just not know how to go about treating it so they cover up thier incompitance by making you question yourself that its all in your head. And I for one know its not. Just because you cant see it doesnt mean its not there. I had a miscariage in 1998 the idiot OBGYN that did my D&C afterwards and a tubal ligation at the same time almost cost me my life. I bled for 4 months, I lived in the Er with the pain and the bleeding I was just lucky that the OBGYN on call took me on as a patient and saved my life. I was put on the pill, iron and 2 months of lupron depo before I had an endometrial ablasion to save me from bleeding to death my count was dangerously low and after he did a biopsy of the uterine lining he did the ablasion. Well that lasted for 3 years no periods nothing and then my periods started to return it was just spotting and only like a day or so. My OBGYN said eventually my cycles would come back normally well that scared me so bad because of all the bleeding before and the pain I opted for a total abdominal hysterectomy in May of 2002. I am 42 years old and have 3 beautiful daughters 21,18 and 12 so my family was complete. I dont know why I got so long winded here but my point is I was never diagnosed with anything!! My OBGYN still to this day does not know what caused the bleeding he figures my body still thought it was pregnant after the miscarriage and continued to make lining for the baby and because there was no baby the lining shed ALL the time. I wish you the best you are so young to be going through all this and having Docs say its all in your head thats a load of crap they are just stumped and God knows they cant admit they havent a clue whats wrong they just chalk it up to a patient making it all up. I wish you the best for a dianosis soon and becoming pain free.
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Cheers...Autumn
Female...42
TMJD...12 years
Anxiety/Panic Attacks (cured I hope)
Total Abdominal Hysterectomy due to endometrial bleeding after miscarriage (2002)
Hernia Repair(1998)
Apendectomy (infected) 1988
21 year old daughter born with Mullerian Aplasia
18 year old daughter bulimia survivor.
If I can help ANYONE with anything from a papercut to a life threatening illness, I will do my best just to be a friend. " A friend is someone who knows all your faults and loves you anyway".
[This message has been edited by Autumn Angel (edited 01-31-2003).]
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Cheers...Autumn
Female...42
TMJD...12 years
Anxiety/Panic Attacks (cured I hope)
Total Abdominal Hysterectomy due to endometrial bleeding after miscarriage (2002)
Hernia Repair(1998)
Apendectomy (infected) 1988
21 year old daughter born with Mullerian Aplasia
18 year old daughter bulimia survivor.
If I can help ANYONE with anything from a papercut to a life threatening illness, I will do my best just to be a friend. " A friend is someone who knows all your faults and loves you anyway".
[This message has been edited by Autumn Angel (edited 01-31-2003).]
jackalack
02-05-2003, 06:28 PM
... after I read your reply, I went ahead and tried to find as much info. as possible about the mullerian anomalies and DES. But I don't see how the symptoms match mine. Unless I am missing something... since the last time I wrote, a new problem has arisen (or shall I say, gotten much worse!) The pain in my left side is constantly there, and the past two days, I am experienceing major pain in my pelvic area and lower back after I urinate. It is is horrible!! THe pain reminds me of what I go thru once a month with my cycle!! I don't understand what could be causing this!! If only the pain weren't so dibilitating...last night it was impossible to try and go to sleep after I had gotten up to use the bathroom. And it isn't like it is time for my monthly already-- I just finished with that over a week ago! (sigh) If only I could get some answers... btw, I also experience arm and leg numbness-- especially at night, therefore I toss and turn and toss and turn. I wonder if I will ever again get a GOOD night's SLEEP!!
jackalack
jackalack
friend
02-05-2003, 11:51 PM
jackalack:
Has anyone considered that you may have a kidney or bladder stone? They hurt like hell.
I have seen a grown man cry over the pain.
Docs kept telling a friend that he didn't have any, then he passed one of them, a very tiny one.
Has anyone considered that you may have a kidney or bladder stone? They hurt like hell.
I have seen a grown man cry over the pain.
Docs kept telling a friend that he didn't have any, then he passed one of them, a very tiny one.
jackalack
02-06-2003, 11:35 AM
,.. actually, I thought for sure that that might be what I was having. But the ultrasound showed my kidneys and gall bladder to be perfect! Even the IVP showed everything to be normal!! My friend also suffers from kidney stones and she said that my symptoms matched hers... but alas, no doctor can find a stone or ANYTHING!! Although, I did see an applied kinesiologist out West, and when he tested my kidnesy muscle it showed that they are weak. I have had sooo many tests and procedures done... I just want to lead a normal life... All my life I have simply wanted to be a mother and have a very big family... but with all this pain and exaustion... I am lucky if I make it thru one day with just my husband and me-- let alone raising children!! I have been daignosed for sure with three specific condintions: Endometriosis, Interstitial cystitis, past Mono infection, and two physiological ovarian cysts. I have been a various treatments and medications including: anti-depressants, Depro Lupron (temporary monopause which put my body thru a living hell), lapryscopy, hysteroscopy, D&C, cystoscopy, MRI, Elmiron, back-to-back birth controll pills (no period for months at a time), and nutririon supplements. My symptoms also include that which would be diagnosed as carpal tunnel, but even that test came out negative! We have basically run out of money going to doctors and specialists. Ans noe I have to deal with this new problem-- whenever I urinate I am excruciating pain afterwards! My left side throbs and hurts as well as my lowerback. The pain is breath taking-- although it only last for approximately 15 min. or so... but that 15 min. feels like eternity!! It really deiscourages a person from wanting to void properly!
jackalack
ps
My mother has been diagnosed with fibramialgya (please excuse the spelling)...she has a host of problems: Osteo arthritis, rheumatoid arthritis, ulcerative colitits, cystic fibrosis, joint pain, fluid retention, weight gain, etc. etc. But I don't seem to match her symptoms-- mine are completely different!
jackalack
ps
My mother has been diagnosed with fibramialgya (please excuse the spelling)...she has a host of problems: Osteo arthritis, rheumatoid arthritis, ulcerative colitits, cystic fibrosis, joint pain, fluid retention, weight gain, etc. etc. But I don't seem to match her symptoms-- mine are completely different!
Jay Tor
02-08-2003, 04:30 PM
Keep reading up on the conditions that you now know are in your family medical history. And, extend your literature search to professional healthcare sites. Most of the consumer health sites list only the most common symptoms and conditions.
The DES symptoms include several problems you mentioned including interstitial cystitis, as well as endometriosis. Mullerian Aplasia can also include these symptoms.
The DES symptoms include several problems you mentioned including interstitial cystitis, as well as endometriosis. Mullerian Aplasia can also include these symptoms.
Happycat
02-11-2003, 10:10 PM
Jackalack, I sooo feel for you, because I am part of several pain forums, I have heard many of the same stories as you have told here. It must be so hard to be so young and going through all this. I know that you want and need an accurate diagnosis, so that you can find away to take away the pain. However, it is obvious to see that you do not like the idea of having to take pain pills or narcotics in the future. Well, who does? But just know that in case you are not able to find a treatment or operation that will fix your problem and take away your pain, then that means that if you decide not to take any pain meds that you will be living in hell on earth every day of your life until you die. Also, you need to know that there are many narcotics and pain meds that just do not "dope" you up, but if you have extreme pain, they will allow you to live life with far less pain than if you were not taking them.
At your young age now, it seems like there would be some compassionate drs. that would give you some effective pain meds so that you do not have to feel like almost dying every day, at least during the time while you are waiting on finding a cure, etc. Remember, there is a very BIG difference between ADDICTION AND chemical dependence, and if you take the meds correctly under drs. supervision, you will not be doped up or become addicted. I know a lot about pain meds because I have SEVERE and CHRONIC BACK PAIN, although I have already had a back operation that did not work and now I have nerve damage and 24 hr pain that the dr. said that there is no cure for. I am very thankful I have pain meds and I do not feel doped up. Also, I take blood test, etc. every 6 mos to make sure that my liver is not being effected, and if there were problems found, there would be alternate meds, etc. I could take. Just know that you do not have to feel this bad every day of your life unless you just want to or unless you have a very ignorant dr. Make sure you find a Pain Management Dr. or a Pain Management Clinic because these people are specialists in pain medicines and pain management. I hope that you do find a cure for your problems and pray for a very successful and healthy future for you and your family. Sincerely, April
At your young age now, it seems like there would be some compassionate drs. that would give you some effective pain meds so that you do not have to feel like almost dying every day, at least during the time while you are waiting on finding a cure, etc. Remember, there is a very BIG difference between ADDICTION AND chemical dependence, and if you take the meds correctly under drs. supervision, you will not be doped up or become addicted. I know a lot about pain meds because I have SEVERE and CHRONIC BACK PAIN, although I have already had a back operation that did not work and now I have nerve damage and 24 hr pain that the dr. said that there is no cure for. I am very thankful I have pain meds and I do not feel doped up. Also, I take blood test, etc. every 6 mos to make sure that my liver is not being effected, and if there were problems found, there would be alternate meds, etc. I could take. Just know that you do not have to feel this bad every day of your life unless you just want to or unless you have a very ignorant dr. Make sure you find a Pain Management Dr. or a Pain Management Clinic because these people are specialists in pain medicines and pain management. I hope that you do find a cure for your problems and pray for a very successful and healthy future for you and your family. Sincerely, April
Merrida
02-12-2003, 06:55 AM
Yes, I am surprised too. Because you are so very young, that should be your trump card, so to speak, and should be one of the predominating factors by which the doctors are gauging you and your treatment.
Have you done all of this through the same doctor, or through the same "network referral system?" By that I mean, have you had all your diagnostics and procedures performed by either (a) the same doc, and/or (b) docs that YOUR doc referred you to, and/or (c) docs only within your insurance's chosen network (if you have insurance that is)?
Because sometimes it's of great value to get another opinion (or several) that are totally not related to your original group of people. Professionals (in any field) within the same "group" (and that can be town, insurance plan, county, same hospital priviledges, etc.) function less objectively than an outsider would.
Two possibilities, both opposite,- but you could either take all your records to another doctor elsewhere out of your area, or alternatively, go to a new doctor without records and see what their take is without the old records.
Old records could influence the referring doctor's opinions (they don't like to step on toes and especially do not like to contradict a peer, and especially do not like to go against insurance regulations). However, they're good for comparison if you develop new systems, and may prevent the same tests from being done over and over on you needlessly.
It sounds so much like this is kidney related. Our manager's girlfriend (who is only in her very early 20's) had 3 kidney stones, and this poor girl was in incredible pain, and he struggled trying to get doctors to finally take her and her pain seriously.
The fact it's so closely linked to your urinating and the associated back pain too seems like they'd really want to pursue that avenue further.
Good luck!
------------------
Life isn't what happens to you -- it's how you react to it!
Thoughts don't make us who we are -- Actions do.
Have you done all of this through the same doctor, or through the same "network referral system?" By that I mean, have you had all your diagnostics and procedures performed by either (a) the same doc, and/or (b) docs that YOUR doc referred you to, and/or (c) docs only within your insurance's chosen network (if you have insurance that is)?
Because sometimes it's of great value to get another opinion (or several) that are totally not related to your original group of people. Professionals (in any field) within the same "group" (and that can be town, insurance plan, county, same hospital priviledges, etc.) function less objectively than an outsider would.
Two possibilities, both opposite,- but you could either take all your records to another doctor elsewhere out of your area, or alternatively, go to a new doctor without records and see what their take is without the old records.
Old records could influence the referring doctor's opinions (they don't like to step on toes and especially do not like to contradict a peer, and especially do not like to go against insurance regulations). However, they're good for comparison if you develop new systems, and may prevent the same tests from being done over and over on you needlessly.
It sounds so much like this is kidney related. Our manager's girlfriend (who is only in her very early 20's) had 3 kidney stones, and this poor girl was in incredible pain, and he struggled trying to get doctors to finally take her and her pain seriously.
The fact it's so closely linked to your urinating and the associated back pain too seems like they'd really want to pursue that avenue further.
Good luck!
------------------
Life isn't what happens to you -- it's how you react to it!
Thoughts don't make us who we are -- Actions do.
anniNangst
02-13-2003, 11:44 AM
I am sorry that you are in such pain--at any age. Although your problem may not be what mine was, I did go through enormous frustration before a diagnosis was made and a remedy given. It started when I was 29.
I had steadily worsening pre-menstrual and menstrual "cramping" and PMS that kept coming earlier in my cycle until it eventually stayed and became my tormentor for 2 1/2 years. I was in pain when I walked, sat, urinated, and sex was a torture I could rarely endure. It felt as if something on the inside was about to fall out, no matter what the activity... I was married at the time and although he tried to be supportive, his levels of frustration steadily mounted also, and he wanted me to have a baby... I sought answers from several physicians, most blew me off with PMS or early stages of endometriosis...all concluded with a pelvic examination only. I was embarrassed of my pain, so I tried to live with it. Finally I found an MD who sympathised with my pain, although he did not know the cause either. He prescribed anti-depressants, anti-anxiety and pain meds to me---in abundance... He finally referred me to a "specialist"(MD who took some extra classes) who did a laparoscopy to see what was hurting me. That is a whole other bad experience! He did tell me he saw some endometriosis and a lot of scar tissue, but he didn't record any images...he recommended a total hysterectomy right away...I was 34. He also told me that I had chlamydia, :eek: which darn near ruined my marriage( :mad:I was faithful!). My sister was very upset when I told her all of this. She lives in a larger city and scheduled an appointment for me with an OB-GYN who she worked with.(she is a nurse also) I saw this wonderful specialist and he asked to do another Laparoscopy, but with digital imaging and possibly laser surgery. I readily agreed,I had to have my life back! He did the surgery, including lasar, and showed me the images he took. I had massive adhesive tissue covering my liver and everything below it. My Physician explained to my husband to imagine what it would feel like to have his testicles super glued to the insides of his legs..every move he made would cause it to pull...what a great way for him to finally understand my agony!
This is a long story, sorry..I tried to edit it to the basics without losing my point. The end result is that I did have a total hysterectomy due to the extensive scarring that had built up and it was the best thing that happened to me after next to the birth of my son several years prior! Oh, and the true specialist ruled out Chlamydia and was angry that I had been told that without even being tested for it! I hold this man in the highest regard, he is an angel to me http://www.healthboards.com/ubb/bang.gif
I hope in sharing this with you that if there is nothing useful toward your diagnosis, at least you will know that I do empathise with you and pray for your recovery. God Bless..Anni
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If you do what you always did, you will get what you always got...
[This message has been edited by anniNangst (edited 02-13-2003).]
I had steadily worsening pre-menstrual and menstrual "cramping" and PMS that kept coming earlier in my cycle until it eventually stayed and became my tormentor for 2 1/2 years. I was in pain when I walked, sat, urinated, and sex was a torture I could rarely endure. It felt as if something on the inside was about to fall out, no matter what the activity... I was married at the time and although he tried to be supportive, his levels of frustration steadily mounted also, and he wanted me to have a baby... I sought answers from several physicians, most blew me off with PMS or early stages of endometriosis...all concluded with a pelvic examination only. I was embarrassed of my pain, so I tried to live with it. Finally I found an MD who sympathised with my pain, although he did not know the cause either. He prescribed anti-depressants, anti-anxiety and pain meds to me---in abundance... He finally referred me to a "specialist"(MD who took some extra classes) who did a laparoscopy to see what was hurting me. That is a whole other bad experience! He did tell me he saw some endometriosis and a lot of scar tissue, but he didn't record any images...he recommended a total hysterectomy right away...I was 34. He also told me that I had chlamydia, :eek: which darn near ruined my marriage( :mad:I was faithful!). My sister was very upset when I told her all of this. She lives in a larger city and scheduled an appointment for me with an OB-GYN who she worked with.(she is a nurse also) I saw this wonderful specialist and he asked to do another Laparoscopy, but with digital imaging and possibly laser surgery. I readily agreed,I had to have my life back! He did the surgery, including lasar, and showed me the images he took. I had massive adhesive tissue covering my liver and everything below it. My Physician explained to my husband to imagine what it would feel like to have his testicles super glued to the insides of his legs..every move he made would cause it to pull...what a great way for him to finally understand my agony!
This is a long story, sorry..I tried to edit it to the basics without losing my point. The end result is that I did have a total hysterectomy due to the extensive scarring that had built up and it was the best thing that happened to me after next to the birth of my son several years prior! Oh, and the true specialist ruled out Chlamydia and was angry that I had been told that without even being tested for it! I hold this man in the highest regard, he is an angel to me http://www.healthboards.com/ubb/bang.gif
I hope in sharing this with you that if there is nothing useful toward your diagnosis, at least you will know that I do empathise with you and pray for your recovery. God Bless..Anni
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If you do what you always did, you will get what you always got...
[This message has been edited by anniNangst (edited 02-13-2003).]