Excruciating Pain Endometriosis?

[Cindy]

Our 18 year old daughter was dx with endometriosis 4 years ago  gets excruciating pain similar to kidney stones in one spot in her left flank. It doesn't radiate. It is incapacitating and requires hospitalization for pca w/morphine.  Her GYN suspect that the endometriosis right next to her ureter causes her ureter to spasm. Endo removed twice - grew back. Her back muscles will also spasm.  Spasms start 1-2 days prior to & continue through her period. They begin a few times a day, increase to 20 spasms/day for 4-5 days, then taper off and end w/i a day of her period ending.  She has been hospitalized 10-12 times in 4yrs, for  6- 10 days each. She has tried Lupron Depot 3 times. 1st was for 7 months and recently for 9 months.  No pain, but hates  side effects.  Lupron, helped for 3 weeks -then pain returns. The 2nd time on Lupron she took more estrogen, the pain returned after 5 months. At that time a urologist and gyn/ob did a joint lap into her kidney area (denervation) looking for endo

[Lailah]

I am new to this forum, in fact the first forum ive ever joined... my doctor recomend I talk to others that are living with endo like myself. To be honest It even hurts to just sit here @ the desk too long.. Im hoping to maybe find out more info on treatment my case is a little Tricky.
I was diagnosed with endometriosis/andemyosis in 1996 @ 19 years old ten years have past and so has 3 laparascopys and 2 laparatomys 3 dncs to maintain the bleeding from my uturus. In the begining I was on lupron and the pill which gave me a blood clot  I have had high blood pressure for 5 years since the lupron and hormone treatments. I also found out when I was hospitilized with the blood clot I have a Blood clotting disorder where I am already prone to blood clots (thrombophilia) My pain doctor cant even perform a epidural pump that actually helps with this due to my high blood pressure/ blood clot history. I was told from 3 specialist from endocronologist to fertility/ and my gyn surgeon i will never have children to due my totally blocked tubes the constant cysts i get when i ovulate and on  my cycle, well it took 5 years and i have had twin boys just march 2006 I have lived in pain for 10 years and after abdominal surgery  i was told i no longer will benefet i  will need a hysterectomy, however due to my eccessive bleeding I have the greater chance of hemoraging.
so if i cant take any hormones at all to supress this, My scar tissue is to much to even go in and try to correct any more, cant get the epidural pump in my back, hysterectomy is really risky.. so the only option is to live on pain medicine all of my life?
My mother had endo and her uturus fell out literally and nearly bled to death i was only 15 but i remember it like it just happend. I cant take any herbs due to my heart condition, Does any one have any thing. athough ive been going through this for so long I stil have "hope" I have had 4 miscariages 3 in second trimester so im just "tired" my husband understands but intimacy is very painful and when i ovulate i know when those cysts are real bad cause i vomit i get a fever im just in so much pain. I dont mean to complai nor sound ungrateful because im thankful for my sons my doctor just thought maybe i should talk to others like your selfs and i can see that you all can understand to some degree that is . Thank You Lailah

[--__]

In all of the responses there is the matter of persistant pain, urinary frequency, and sometimes pain with intercourse. If the standardized workup has been negative, the next step is to be evaluated for myofascial trigger points in the pelvic floor and abdomal/back muscles. PLease visit for more information:  

http://pelvicrehab.com and http://www.womenshealthapta.org/plp

[judahslion]

I also had endo.  I had a complete hysterectomy.  Then some pain returned, so I had a lap.  Two weeks later, after cleaning my house, the pain became constant & at times unbearable.  I have had a cystoscopy & now am scheduled for a colonoscopy.  I also just found out that I have anemia.  I force myself to work, but then collapse at night & weekends.  No one seems to be able to figure it out....

[ohmandy]

I have had many of those same symptoms myself and have had test run and no news. I have bladder spasms, swellon stomach, pain from what the doc thinks is a kidney stones, spotting, and the most severe pelvic pain I have ever felt in my life for the past 4 periods. I have endometriosis and IBS, but the docs can't figure out besides that what is going on because my symtoms are more severe now. I do not have any answers except keep digging with the docs, and if anyone can help, please do.

[Lennox Hoyte, M.D.]

It sounds like she has been through quite a bit of intervention! . The thing I have not heard you mention is whether or not she has been evaluated by a licensed physical therapist for myofascial issues. If not, she probably should be evaluated by one as well. Alternatively, you should consider an evaluation by an MD or DO specializing in musculoskeletal issues.  /LH

[sadforfriend]

I'm posting this here b/c the forum wouldn't allow me to create a seperate question.  Kindof a similar situation though.  A friend of mine has been having pelvic pain for the last couple of months and it just seems to be getting worse and worse.  Dr's have done, CT scans, ultrasounds, laporascopy's, blood tests, etc.  But can't seem to find anything wrong.  Along with the pelvic pain often comes severe headaches, nouseau, vomiting, spotting blood, and fainting spells.  About 9 months ago she had endometrioses removed with a lap but endo wasn't found this time.  The last time she saw her obyn he eluded to the pain being caused by stress or depression.  Can that be a factor?  What else may be a cause?  It seems that her doctors are just giving up on her.