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Old 01-31-2013, 12:40 PM   #1
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speckled pup HB User
What Do I Do Now?

I won't go into my horror story of Stage 4 Endometriosis, but suffice to say my battle rages on. I am 18 years post-surgery (3 total) ending with complete removal of ovaries, tubes and uterus. The endo had spread aggressively to all abdominal organs, including liver. A renowned cancer surgeon did my final surgery in 1994. He said he did his best to remove all of the implants, but could not guarantee the outcome. Fastforward...The pain never went away. It has become so intense, I am convinced my insides are bound together again. My surgeon has retired, as has my GP of 30+ years. I'm lost. I need help. While I have to respect others choices for "alternative" healing of mind, body, spirit...That's not for me. I need help, before my colon ceases to function. What do I do now?

 
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Old 03-13-2013, 07:54 PM   #2
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dany1982 HB Userdany1982 HB User
Re: What Do I Do Now?

Have you tried lupron?

 
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Old 03-14-2013, 11:36 AM   #3
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speckled pup HB User
Re: What Do I Do Now?

Hello Dany,

Thanks for your question. Yes, I did the Lupron/Depo shots back in 1993 prior to my 3 surgeries. I am 19 years post-surgery @ 51. I still cramp into fetal position the first week of every month (was always my period). I've been told by drs "phantom pain, adhesions...not possibly residual endo after no estrogen for all these years". The fact remains that I am in pain. I have NO quality of life. I cannot tolerate pain meds. They intensify my constipation leaving me crying in the bathroom floor with enema. Ironically, I just had an endoscopy and colonoscopy yesterday. The dr said my esophagus, stomach, and colon looked "good"...my pain is probably due to adhesions binding my left colon flecture. She wants me to try Linvess (sic) to regulate the constipation. She confirmed what I knew, which is that my surgeries have caused scar tissue...surgery to remove adhesions will create new adhesions.

 
Old 03-14-2013, 05:51 PM   #4
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dany1982 HB Userdany1982 HB User
Re: What Do I Do Now?

Maybe you can try lupron again if it helped you before. Or maybe some progesterone, or bio-identical progesterone cream. They help me a lot when the pain is bad. To me it sounds like the pain is from endometriosis if it correlates with the pain of when you had your cycle. When my mom had her hysterectomy the doctor told her that the body still produces estrogen and progesterone, but just in smaller doses, even if you don't have your ovaries. Maybe you still have excess estrogen, have you done a test of your hormone levels?
I really feel your pain, I'm in pain also, but can not take painkillers because of my gastritis and reflux, which get so bad on the pills.

 
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Old 03-14-2013, 07:59 PM   #5
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speckled pup HB User
Re: What Do I Do Now?

Oh, I didn't mean to imply that Lupron helped me. It didn't. I cannot take the bio-identical HRT because of the endo. My cancer surgeon had me take tumor-suppressing meds for 7 years post surgery, until I Just simply could not tolerate the plethera of side effects. In hindsight, my periods were horrific from the onset at age 11. I suffered excruciating cramps, requiring dr visits and missed school days, not to mention flow so-o-o heavy that pads were a joke. I'm "Ice Age" apparently, as Kotex was all I had...the kind that required an elastic belt...I digress. Forgive my being flippant. I'm told I engage in "dark" humor. I had annual pap smears from age 20. I begged for answers to my pain. I was told I needed to practice visualization, and to perhaps try a glass of wine nightly. That continued until 1992, when my periods were putting me in the hospital. I was in so much pain, I wouldn't eat or drink, thus becoming severely dehydrated. I once spent 9 days on IV. Still the "finest OB/GYNs" in my area were perplexed...suggested Tylenol and psychotherapy. It would frighten women to know how many of "the best of the best" could/would not diagnose me. Mind you, this was wa-a-ay before the internet. I'd never heard the word endometriosis until a urologist told me that I was a textbook case. I still couldn't get help until 1993. Even then, the gyno told me I was too young to have a hysterectomy, so he performed a "conservative" surgery to remove my uterus by lap/vag and "cleaned up my ovaries" so I could "keep them". My husband and I cried when he told us he'd left this monster inside me. Dear Lord forgive me for my youth and ignorance...Within 3 months I insisted he perform a second surgery because I was still in so much pain. He botched the second surgery, too, and I found out later that he also sewed part of a falopian tube into my vaginal cuff. That alone created proud (sic) flesh requiring multiple cauterizations in my vaginal canal. I won't take you down the perverbial rabbit hole of how I still suffer with vaginal/rectal pain. I equate it with a feeling of being violated with a twisting serrated edge knife. I digress again. I went into a death spiral after the 2 surgeries in 1993. By early 1994 I was rushed to Oschner's Medical Research center in New Orleans in complete liver failure. Thankfully, it was not CANCER, as feared. The endo lesions had blocked the common bile duct of my liver, shutting it down. The GYN/ONC had to wait a month to perform open abdomen surgery because he feared I could not survive the procedure. He opened my belly from breast bone to pubic bone, and "touched" every organ in my abdomen trying to remove what he described as a shotgun blast to my gut. He was honest to tell me that it was so invasive and widespread that he was unable to get all the endo. It had encased my pancreas, bowels, kidneys, bladder, and liver. There was a mass at the top of my vaginal/rectal canal the size of a melon, requiring resection of my colon/rectum. My surgeon, who truly is world renowned in the field of female cancer, had tears in his eyes of remorse that I had gone undiagnosed from what he believed was the onset of puberty/menstrual cycles for me. He did the best he could to erradicate, but knew he hadn't performed a miracle. He continued to treat me until he retired. Unfortunately my GP retired also, leaving me with no one. My new GP patted me on the shoulder and sneared that "You can't have residual endo. You're past 50. You have no estrogen." HE HAS NO SENSE. I have no hope. I am in so much pain, I cannot function. I believe with every fiber of my being that my autopsy will reveal an abdominal cavity once again consumed by endo. Enter "dark humor"...The coroner will probably misdiagnose.

 
Old 03-29-2013, 01:32 PM   #6
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dany1982 HB Userdany1982 HB User
Re: What Do I Do Now?

I'm so sorry, for your pain. That is so scary. I really don't know what else to suggest. I'm trying now Vitex, a supplement, but I'm having some not so pleasant side effects. I created a new post about it.

 
Old 04-01-2013, 12:22 PM   #7
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Marilyn_Jade HB User
Re: What Do I Do Now?

Quote:
Originally Posted by speckled pup View Post
I won't go into my horror story of Stage 4 Endometriosis, but suffice to say my battle rages on. I am 18 years post-surgery (3 total) ending with complete removal of ovaries, tubes and uterus. The endo had spread aggressively to all abdominal organs, including liver. A renowned cancer surgeon did my final surgery in 1994. He said he did his best to remove all of the implants, but could not guarantee the outcome. Fastforward...The pain never went away. It has become so intense, I am convinced my insides are bound together again. My surgeon has retired, as has my GP of 30+ years. I'm lost. I need help. While I have to respect others choices for "alternative" healing of mind, body, spirit...That's not for me. I need help, before my colon ceases to function. What do I do now?
I think the best thing for you to do I look for an endometriosis specialist (they actually exist now!). Things have changed a lot since 1994 I had my hysterectomy in 2001, my endo is back and I was forced to find a new doctor as well. It is really hard not to feel defeated, but keep fighting the fight! I've found out more about endo in the past month than I did in all my research back in 1997-2001. For example, endo creates it own estrogen to live on! And now they cut out the endo with excision surgery instead of just burning off the surface. Awareness and treatment are a little better than it used to be. Find a specialist, that is the best advice I can give.
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Marilyn Jade, SC

 
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