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Hello everyone, I guess it's best to start from the beginning. 32 years ago I had a partial hysterectomy due to endo. I am now 55 and I still have my ovaries. Recently I have started experiencing severe pelvic and back pain. I had a transvaginal ultrasound and the tech found lesions and scar tissue. I have an appt. With a gyno soon. The reason I'm here is because I wanted to ask if anyone knew if endo could continue to grow over such a long time. The pain seems to be getting worse.
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aitarg35939 Wndwlkr
Posted
Sadly, the answer is yes. I had a total hysterectomy at 27, then had 27 very good years. When it came back, it looked like diverticulitis. Had surgery, path report came back: all endo. A small section of my colon was removed, and I've had another good 7.5 years. I now have a huge, upside down T on my abdomen, with the upright being ugly because incision had to be opened in 3 places due to an infection (from inside me, not from hospital). I can live with that.
It's important that the surgeon be able to look ALL inside. Insist on a surgery that will allow this because that transvaginal is incapable of showing everything. The ONLY way to know is a complete look inside.
I know this is hard to hear right now, but you & I have had it easier than many here because we had so many pain-free years. I hope that your surgery goes well.
Wndwlkr aitarg35939
Posted
I haven't even started down the long road to finding out for sure if it's endo yet. The only indication I have is what the tech said. I pray that I find out more after my first appt. with the gyno. I am still very much in the dark. The pain is very bad. I forgot how bad it really could be. I don't know if he will want to do surgery or not. I have had a CT scan and the transvaginal ultrasound so maybe with both of them they will be able to figure something out. I am nervous as I am not looking forward to a series of surgeries. I hope this doctor is well versed in endo and works quickly. The pain seems to be getting worse everyday. When you say "path report" what do you mean?
aitarg35939 Wndwlkr
Posted
As you know, the only absolute way to know if you've got endo is to be cut open, whether it's a laparoscopy or something larger. No scan, no ultrasound can say absolutely. They might give a hint, but only in that area.
Talk to doc/surgeon & make it clear that you only want 1 surgery so you expect them to inspect every abdominal nook & cranny, AND you want them checking kidneys, stomach, diaphragm, bladder, removing ovaries (& tubes & cervix if you've still got those, IMHO) PLUS running every square inch of all intestine. This is just to make sure they get everything possible now. If any doc or surgeon thinks that's excessive, run out the door & find a better one. No one can absolutely guarantee it won't come back again but you want the best chance you've got.
Path report = pathologists report of their analysis of any surgically removed tissue. I had told my surgeon plus my gastroenterologist plus EMTs at a certain point that if I hadn't known it to be impossible I would've guessed I had endo again. So during a followup after surgery my surgeon, who's done some other abdominal surgeries for me, told me I had to read that report. He hadn't known it was possible, either, especially in someone without ovaries, uterus, tubes, cervix.
As for you, let's hope it's something less than endo.
Wndwlkr aitarg35939
Posted
I guess I need to introduce myself. My name is Carla. This is so much info and I am overwhelmed. Do you think we could talk on the phone? If not I totally understand. If you do not feel comfortable with me having your number I understand. I just need someone to talk to. You seem so knowledgeable and I can tell you have been through so much. I am afraid of what lies ahead of me. I don't want a fight with doctors but I am not going to be in pain like this. I am worried about what t will do to my kidneys, bladder and other organs if left untreated. Thank you for all of your help and advice. I look forward to hearing from you again.
aitarg35939 Wndwlkr
Posted
Hi Carla
I am sorry for I have added to your load by causing fear. I am in the States and only have U.S. phone service. But I'm going to pm you now. You'll get a notice saying that someone has sent you a private message.