Endometriosis

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What was the worst thing a doctor told you?

What was the worst thing a doctor told you?

Hi. I know it sucks what doctors can tell us. Things like: "you are overreacting" or "just try a new pill" are sometimes the nicer things we hear. Like when I was 17, and a Doctor told me that I should get pregnant soon. Or when a Gyn ask me: "Don't you have a REAL problem?" after I told her my symptoms.
I also had an ultrasound and was told everything is fine. "You have at least tree cysts, and I can't see your left ovary because of fluid. But that is perfectly okay.… read more

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A MyEndometriosisTeam Member said:

I had an experience with a Gynecologist that just made me feel unsafe and I wish I had brought my social worker in with me. The one on one I had with… read more

posted about 1 month ago
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Unilateral vs. Bilateral Oophorectomy

Unilateral vs. Bilateral Oophorectomy

Has anyone out there had either a unilateral or bilateral oophorectomy in conjunction with excision/ablation, possibly in their mid to late 30s or early 40s? Have you been happy with your results? Have you had symptoms return? In October of 2016, I had an excision/ablation surgery, felt great for 5 months, and then my symptoms returned. Currently I’ve been on Lupron for almost 2 years and actually do really well, except for the surges towards the end of one shot and then… read more

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A MyEndometriosisTeam Member said:

@StaceySmithCreech thank you for sharing all of that! Wow, this disease sure is a trade off of things to deal with, that’s for sure! Your answers have… read more

posted 3 months ago
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What is best? Hyteroctomy or oophorectomy?

What is best? Hyteroctomy or oophorectomy?

I have been having such unbearable pain lately, seriously considering an oophorectomy (removal of the ovaries) or go for the hysteroctomy. I last laparascope I removed my tubes but nothing seems to work. Has anyone received any relief after these two procedures?

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A MyEndometriosisTeam Member said:

Have your surgeries been done by an experienced excision specialist or was it ablation? If not excision this may be why you still have so much pain.

posted 5 months ago
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Nausea during sex...

Nausea during sex...

My doctor has asked repeatedly about pains during sex however my pains are at random and usually feel like...you know those baseball bats with nails sticking out of the end - if there was such thing as a retractable one then that's what its like for me - randomly the nails are out and other times it's just a painful pressure closer towards either hip but on the inside of me. I don't feel any of that during sex, not be too personal but I have a pretty high sex drive however when… read more

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A MyEndometriosisTeam Member said:

Thank you, changing positions does help during

posted 4 months ago
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Nausea and loss of appetite?

Nausea and loss of appetite?

For the past few months I have had almost no appetite. Im typically only able to eat at dinner time. Ive also noticed that smelling foods causes nausea and loss of appetite. I keep losing weight so my pelvic pain doc referred me to a new GP but I cant get in until the end of May. All of my bloodwork came back normal and Im definitely not pregnant. Im just wondering if anyone else has experienced something like this and how you overcame it? I love food and I want to eat so badly but I… read more

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A MyEndometriosisTeam Member said:

I had a terrible patch like that last year before I was diagnosed w endo and I didn't start to feel better until I was put into a really good anti… read more

posted 5 months ago
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Overactive bladder?

Overactive bladder?

Hey guys I was wondering you had (or ever experienced) and overactive bladder while you're on your period? I seem to have to go pee way more often than usual when I'm on my period. Anyone else experience this??

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A MyEndometriosisTeam Member said:

Yes, I have had this too. I have had endo removed from the outside of the bladder twice now. After that those symptoms completely stop for several… read more

posted 3 months ago
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Depo-Provera versus laparoscopy for reducing the progression of endo

Depo-Provera versus laparoscopy for reducing the progression of endo

I'm wondering if anyone has opinions or experience on the effectiveness of Depo-Provera versus laparoscopy for the treatment of endometriosis.

I actually have two questions:

1) Has anyone had both Depo-Provera and a laparoscopy, and if so, what are your opinions about the effectiveness of the two? And effectiveness aside, did you feel that one was more worthwhile than the other, in terms of quality of life, how long the treatment interrupted… read more

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A MyEndometriosisTeam Member said:

terms of how worried should you be? Not worried. Worrying never helped anything especially endo as stress makes it so much worse! You sound smart :)… read more

posted over 1 year ago
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Symptoms prior to diagnosis?

Symptoms prior to diagnosis?

Im still awaiting to have my diagnostic surgery and am wondering what everyone’s symptoms were prior to diagnosis, as well as tips and tricks for surgery day as I’m absolutely nervous for the day to come because I’m terrible with needles and the thought of surgery! And wondering if anyone has overactive pelvis muscles as part of endometriosis?

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A MyEndometriosisTeam Member said:

I was terrified my first time, and I have a history of anxiety and panic attacks. I talked to my Dr, and he allowed me to take a xanex before showing up… read more

posted over 1 year ago
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I had a bilateral oophorectomy and tube removal four months ago and the pain is back full blast. How many have had to more surgeries?

I had a bilateral oophorectomy and tube removal four months ago and the pain is back full blast. How many have had to more surgeries?

My OBGYN said that this was our last resort. I was in indescribale pain and went from Stage 3 to Stage 4 in just a few months and my pelvic cavity was like a bomb went off. I was great for the first few months just like normal again. A little before Thanksgiving all the pain came back. How many have had to go back for more excisions or other surgeries? Trying to figure out what I… read more

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A MyEndometriosisTeam Member said:

I do not recommend the Lupron injection! It’s side affects and cost alone are awful! I think I was more miserable on that shot then having the pain… read more

posted 9 months ago
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Who else has severe side effects from using Visanne

Who else has severe side effects from using Visanne

Hi endo warriors

Is anyone using or has used the drug Visanne before? How are you coping with the side effects? Mine are so severe especially the bloating, weight gain, constipation, dry eyes and fatigue?

How have you overcome the side effects?

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A MyEndometriosisTeam Member said:

I started taking it Sept 28th, it helped with the pain but the side effects were to much i stopped taking it two weeks ago, back to extreme pain.

posted 7 months ago
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