Heart breaking for my little sister :(

[ShellTX]

My little sister who is 43 years old has endured 3+ episodes a year of suffering severe abdominal pain, nonstop vomiting and diarrhea to the point of being hospitalized more than 100 times and the one thing that has been the common denominator is that she is always on her period when it happens.  
They have scoped..scanned and ran every test under the sun with not one answer to WHY!  
She has been in the hospital since Tuesday and they put her again through the same protocol of doing endoscopy..colonoscopy..labs..ect...all negative.
Doctors have been asked IF this could be endometriosis several times but no one would considered the idea seriously enough to research this as a cause.
She has been to countless specialists-Gi..internists and OB's and no one has ever mentioned endometriosis...
NOW today this doctor wants her to make an appointment with a OB surgeon to do a laparoscopy on her to check for endometriosis....
While I am relieved I can not believe that it took 30 years of her being in agony for one doctor to even say the word ENDOMETRIOSIS.
WHY? Is this common?
The pain is so bad she needs Demerol or Morphine for  pain which can take up to 3+ shots before she can feel any relief..the worst symptom to me is the nonstop vomiting that has been ongoing now 6 days straight.
Not able to keep down a sip of water down so they are giving her IV fluids and Phenergan....but no more meds for pain because they fear addiction!
They treat her as if she is a drug addict even though she is crying & shaking in pain..throwing up bile & blood pressure & pulse rate is sky high!!
Seems cruel & inhuman to me to let her suffer!
I just wanted to reach out here to find if others have suffered as she did and what was done to stop it!
She has wanted a hysterectomy for years now because she can not handle it no more.
It has taken over her life since 9 years old!
She was to start a new job tomorrow..has already gave notice at last job 2 weeks ago with last day being last Monday...got sick on Tuesday..it is not fair!
No absolute diagnosis yet but my gut feels it has to be this!
Looking for answers!
Thanks:)
Shelley

[ShellTX]

What a coincidence..he was the one I told her about after doing a little research.
So happy you recommended him!
Thank you!
Shelley

[ticked]

You are in luck I have heard really great things about this surgeon.

Dr. John Dulemba

The Womens Centre,
3321 Unicorn Lake Blvd,
Suite 100,
Denton, TX 76210
T: [phone]

*Dr. Dulemba is part human, part robot.... he is the Robodoc!

Specialisation: GYN only
Bowl/urinary tract surgery: Does some of own bowel and urinary tract work. Segmental bowel resections are conducted by an assisting colorectal surgeon.

[ShellTX]

Thank you:)

[ticked]

I promise I will get back to you I need to get on my laptop but I had some complications so please if I don't get back to you in a couple of days please message me

[ShellTX]

Thank you:)
My heart goes out to all of you & wish for your pain to end.
Sending hugs & healing!
XX
Shelley

[lulu747]

Yes unfortunately endo, especially if left undiagnosed for some time, causes permanent nerve damage so the pain does not really ever go away entirely.  That being said, it is significantly reduced when menses do not happen.  But the damage is not really reversible.  Does your sister have children or want them?  At her age a hyster would be a good option but i would try for a good surgeon who knows how to excise endo first.  Based on your explanation I would say she has it in other organs of her body- bowel, bladder, etc.  I did.  So removing the uterus is not a guaranteed cure for the pain or the disease.  I strongly believe this after all my years of research, education in this disease, and women I know who have suffered the same.  Get her a good surgeon and be a strong advocate.  And please- get support yourself.  I know how hard it has been for my man and my family and friends to watch me suffer so.  They feel powerless and I encourage them to get their own support.  If your sis has questions, get her to PM me.
You are a good sister.
Lu

[ShellTX]

Thank you so much!
I am so sorry for all the suffering you & others go through and can not imagine living this nightmare whatsoever.
Heartbreaking. :(
I never knew a hysterectomy was not a cure for endometriosis?
My wish for her to have this surgery and be DONE with this chapter in her life....
We really need to be armed here with the right PROPER education to avoid more pain...and torture.
Very grateful for all the wonderful advice!
Shelley

[lulu747]

Agh I feel for your sis!  This happened to me as well.  It took 15 years for me to be diagnosed and treated properly.  My family doc even sent me to psychiatrist thinking I had a mood disorder before I found a pain doctor whose wife suffered with endo and he referred me to the surgeon who saved my life.  I had two surgeries that excised the endo which was stage 4 and literally everywhere on my bowel, uterus, bladder, cervix, and ovaries.  I was good for 3.5 years but am having an awful relapse so am headed back to surgery.  Ticked is the best on this site and I'm sure she will respond once she has recovered from her recent surgery to point you and your sis in the direction of the right surgeon.  Just tell your sister she is not crazy and not alone.  I can't take BC either.  I puke from the pain all the time.  Unfortunately, a hysterectomy will not cure the pain of endo.  She needs a good surgeon that knows what they are doing.  Ticked will respond soon.
I send my support and tell you not to lose faith.
I lost 6 years of my life to endo and am still fighting the battle.  
But- I did get almost 4 years of relief and know I will again.  The key is the right surgeon.  You gotta fight and be a strong advocate.  Do not stop until she gets the help she needs.
Sending support...
Lu

[ShellTX]

Thank you so much for replying!
Horrible how so many women suffer from this and not have anyone to take them seriously!
This has really affected her emotionally/mentally...after being hospitalized 3-5x/year and with no answers and no one seems to take her serious or realize how much she is hurting has taking its toll on her.
So many days of her life has been trying to re over from these episodes.
Very tiring.
If you can give me some good info to point her in the RIGHT direction we both would be extremely appreciative!
Do not want to waste another minute!
My fear after reading so much last night is that she will have Stage IV endometriosis & and her other organs are affected..or long term damage not yet known.
Makes me ill.
It is criminal to let her have this for decades with no help from the medical community. Sigh.
She lives in Irving, Texas..about 5 minutes from Dallas.
She does not want meds or take the birth control route because of terrible side affects and seriously just wants a total hysterectomy.
She is SO done to end this nightmare....who could blame her. :/  
Thank you so much for responding!

[ticked]

Shelley I was going to answer sooner but I am recovering from surgery and I didn't want to be out of it to respond.

The unfortunate thing about Endo is that there is usually an 8-10 yrs before beig diagnosed. I started getting pain at 13 and went to over 40+ doctors and went and did all those tests some time more for some and everything would come back negative. It mentally messed me up because of the treatment i got from doctors, no one would listen. I was finally diagnosed at 27 but the damage was already done to my bowels and bladder. I had frozen pelvis and a rectovaginal cyst which I knew I had since I was 15 but all the colposcopies and tests said nothing was wrong.

What I can say to you is, don't let her have a lap with any gyno they are so limited in their experiences and they don't specialize in Endo in fact they still all usually go by the Sampson theory of retrograde menstration from 100. Yrs ago. If you let me know where she lives I can let you know of some fantastic surgeons in her area.

I answer questions on here because it took 14 yrs for me to be diagnosed and I had no one it was brutal. I am here to help you any way I can.