Question
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).]
Answer
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).]
Answer
Just looked up müllerian anomalies and the article cited the American Fertility Society as the best information source.
DES [diethylstilbestrol] is also mentioned several times. This is an estrogen-type drug that had been used in the late 40s to early 70s. One devastating long-term side-effect was that female children born to women who had used this drug was congenital deformities of the reproductive system. This side-effect was discovered in the 70s.
Jackalack - some of your symptoms are similar to those described in the mullerian anomalies article. Read up on this condition, discuss with your doctor, and then decide whether you need a Fertility Specialist consult.
Here's a link to DES information:
[This message has been edited by Jay Tor (edited 02-01-2003).]
Answer
... 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
Answer
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.
