You're correct, you definitely can't diagnose endo with an ultrasound! And, I'm younger and haven't had an pregnancies yet, so maybe it's a different story for me, but from what I understand, hysterectomies are not necessarily protocol for treating endo. I have a more mild-moderate case and Lupron has never been a suggestion for me. Just remember that symptoms don't necessarily correlate to the damage done, so it might be an easier fix than you are imagining. The only way to get it diagnosed and treated is to have laparoscopic surgery, where they can take a look at what's going on and then get rid of anything that they find. In my experience, birth control is all I've needed to treat it (after first lap I started one, and after this past lap I added a second one), and it's been fine!

Thank you for your response! I know the normal treatment/protocol is to start birth control but due to my brain condition I can not be on birth control at all any form with hormones anyway! I just feel the dIagnosis of endometriosis might be off because everything I've read is you suffer for a long time before they jump to hey you might have it so let's look and with mine coming on so fast and so late in life it surprised me. I have no family history of it but my mom did have adenomyosis so I do wonder if that is what I have instead. I'm so confused and a little scared.

Get another opinion! It never hurts to hear what another doctor has to say and it sounds as though from your post that you clearly don't agree with or trust this doctor. I can't believe some doctors out there still just jump to the very old standard and barbaric option of a hysterectomy before even going in to perform a diagnostic laparoscopy to see what's going on. Hoping that you can get this sorted out and that you find a caring doctor that understands your inability to take hormones. ~Jen

Hello AW96...

I have a somewhat different "take" on this. Yes, you need a definitve diagnosis. You could have both adeno and endo. The amount of pain rarely correlates with the amount of the disease. Some have advanced endo with no symptoms. Some have little endo with debilitating pain. I'm one of the stage 4, aggressive endo, aggressive treatments (including removal of ovaries, tubes and uterus) Lupron AND 7 miserable years of tumor suppressing meds post-surgery. (Yay, me!!!) SO...I ca't give you a happy ending. I still have horrific pelvic, vaginal and rectal pain with equally horrific bowel issus. I'm now told that "Pain MUST BE due to adhesions, because residual endo without ovaries is not possible"

Well, all of us endo veterans know that statement is bullshit. Your body can produce small amounts of estrogen without ovaries. It can also convert fat to estrogen. Either way, I'm in HELL and no one will touch me.

I have many concerns in regard to your post. I understand the inability to take hormones, because I have been forbidden from any HRT for 21 years since hyst. I took Lupron, regrettably, and I am living (existing) with the consequences 2 decades later. My bones are dangerously thin and weakened. I need TKR and THR, but refuse to consider either for now. Instead I have Synvisc injections in my knees (vomit in trashcan painful) to keep going. I DO NOT recommend Lupron to anyone, but it's YOUR choice and your body. I would question how the Lupron would affect your brain condition, considering that its purpose is to inhibit production of hormones?

A hysterectomy with removal of tubes and ovaries DOES NOT cure this disease. I know of nothing that does. However, if your family is complete, consider yourself BLESSED as many of us will never know what it is to be a mom...no matter how badly we want to. I know. IMO and that's not worth much...I would not (in your position) spend the rest of my life FIGHTING to keep my ovaries or uterus. If I found a specialist that I trusted (There are many ladies here with first hand knowledge of doctors, clinics, etc.) I would go with OPEN surgery to clean out your entire abdominal cavity...taking the ovaries, tubes and uterus. IF he/she is skilled, they can clean up the ureter as well. Just PLEASE don't allow any ole GYN surgeon perform your procedure. IF you have really good insurance, get started researching specialists to give you the best possible options to STOP THIS beast in your body. Again, the high dollar treatment centers are available. I personally would listen to the gals here who are on the front lines, fighting for their lives. What part of the country do you live in? If Texas is nearby, I would consider Jen's doctor (Dulemba) near Dallas.

Sorry so long. This evil disease cannot be discussed IMO in 200 characters or less. I've not posted much at all here for months, because I'm just in a hopeless FUNK with my so-called life. I check in here from time to time, but the truth is...I don't have a marshmallow world outlook on treatment or procedures. I refuse to project that, and MOST don't want to hear my truth.

Hugs~~Pup

Hi Pup! Nice to see you on here! I was in a really bad mood the other day and failed to elaborate or be as informative and supportive that I know that I should have been. I'm struggling still today as the pain is taking it's toll on my mood...so, I'm simply going to give you the info on my wonderful specialist. His name is Dr. John Dulemba and he's located in Denton, Tx. ~Jen

Thank you all for your advice. I actually really like my GYNO and she has been very helpful. I am frustrated with my regular doctor for making me wait so long before referring me to see the GYNO. I've done a lot of research and I'm pretty sure the Gyno is on the right track as far as a hysterectomy. When it boils down to it, I can't have hormones because of my intracranial hypertension, I'm done having children and the pain is getting to the point were working during my period is very difficult. So I can accept the hysterectomy. I'm a little less eager to have my ovaries removed but understand that having 2 large complex cysts on each ovary is no bueno. She said she would only take those if absolutely necessary. She plans to go in lap initially and only open me up if she has too. My biggest fear/concern is the Lupron. I don't want to have the hysterectomy and refuse the Lupron and basically have gone through it all for nothing if there is no relief but at the same time I don't want to take the Lupron based off of everything I've read/heard.
I may ask her if I can go forward with the surgery and wait on the Lupron and then if the pain continues or gets worse then consider it but I just don't feel comfortable taking it.
As for getting a second opinion...not very easy with my insurance...it took me from September to December to get a referral. Jen, if I lived in TX I would definitely look up your doctor though.