Possible Endo. Advice? Anyone similar to me?

[Heyllahn]

I'll try to give a brief background first: I'm 28 years old. During an ultrasound that was intended for my kidneys, they noticed by chance a mass in my abdomen (my kidneys ended up being fine). From there I had a cat scan, that gave a clearer image of a 6cm cyst on an ovary. My gynecologist is pretty sure it's endometriosis, and scheduled a da Vinci Robotic laparoscopic surgery in about a month, to diagnose it for sure and remove anything she finds.

If it wasn't for that ultrasound, no one would have ever guessed there was anything going on with me. I consider my periods to be fairly normal: My cycles last about 28-30 days, periods about 5 days, 2-3 of those days painful and heavy (but nothing I couldn't manage with Advil or similar things), some fatigue, headaches, etc. But nothing horribly unbearable, as I constantly read is common with endometriosis.

Has anyone been in a similar situation as me? It's very likely that after the surgery they might put me on Lupron, and after that birth control pills. I'm absolutely terrified of Lupron (and not sure if I need bc pills either...). Do I really need it if I've never experienced terrible pain, and fertility is no concern of mine (not having children ever for too many reasons to explain).

Thank you for your time!

[ticked]

I am here to tell you as well I went though similar.

I went in looking why my bowels were causing me so much pain. I had a 10cm ovarian endometrioma.

I did go on Lupron as per the request of my surgeon and because I didn't know any better I agreed to it 3 different times after my first surgery.

The choice is ultimately yours to go on it or not. I had better results and less side effects on marvelon (BCP) taken continuously. I did that for 8 yrs but I was highly symptomatic.

I have many journals on my profile you can read if you are interested. There is a very huge Endometriosis network on Twitter (which I prefer over facebook) because there are women from all over the world on 24/7 so it has been helpful for me. My handle is @endendoforever if interested.

I know this is hard to believe coming at you since you had no symptoms and some women just dont have symptoms which makes it hard for doctors to understand.

There is no cure for Endo but the gold standard is excision surgery. I am not 100% sure if robot is excision or laser but I would fine out.

The reason I say that is because excision means to cut out the disease from the root where laser is not as effective as it usually only gets the surface of the disease.

I say this to many. Make your first surgery count. There are many women who have had over 10 surgeries and I have heard as high as 25 which is insane. You want an endo specialist and since you are not symptomatic I would suggest looking into this before you do go forward with the surgeon you have.

I can help you find one of the top specialists in your area.

[Heyllahn]

Thank you very much for taking some time to comment!
I'll check your journals, as well Twitter, thanks for the suggestions!

I've been reading a lot about Endo lately and I know that excision surgery give the best results, but I doubt the one I'm getting will be that way. It's fine with me if this first surgery is not the excision kind. I think it's a good chance to check how serious or not my endo is, how much it has spread, etc. I plan to initially refuse Lupron and other treatments (unless I develop pain and unusual cycles, and I think I'd be worth it). Then, whenever I need a second surgery I'll look into an endo specialist for an excision. I'd be wonderful if you could help me find one. I live in South Florida.

Thanks again!

[ticked]

I only see one in Florida which I don't think is the best one.


Dr. Steven McCarus
beschrijving
Center for Complex Abdominal and Pelvic Pain Syndrome (http://www.celebrationhealth.com/services/center-complex-abdominal-and-pelvic-pain-syndrome),
400 Celebration Place,
Celebration, FL 34747
T:407-303-4424

Specialisation: GYN only
Bowl/urinary tract surgery: Unknown

*Dr. McCarus is well-known for his adhesiolysis surgery. It is unclear whether he possesses a similar expertise in endometriosis excision.

Specialisation: GYN only
Bowl/urinary tract surgery: Unkown

However if you can travel to Georgia you have one of the top surgeons in the US there and he is amazing. I have met him personally.

Dr. Kenny Sinervo
beschrijving
Center for Endometriosis Care (CEC) (http://www.centerforendo.com),
Perimeter Town Center,
1140 Hammond Drive,
Building F, Suite 6220,
Atlanta, GA 30328 USA
T: [phone]

[Heyllahn]

Thank you! Will definitely look into it.
My lap is going to be in a couple of weeks, so I'll see what the damage is then...

[Heyllahn]

I see... I got my lap surgery 3 days ago. My doctor confirmed that I had a lot of endo, and my cyst ended up being about 15cm big. She was baffled as how I wasn't in a tremendous amount of pain from it.
I have to see her in a couple of weeks, and I know she's going to push me for Lupron... I'm not confrontational, so I don't know how I'm going to turn it down... I have to find an alternative.