Why did surgery for endo not help?

[Rin93]

I have endometriosis and 6 months ago I had surgery to both diagnosis and remove the endo. I was told I would get better have less pain and yet I'm worse now than ever. Why? Has anyone else had this problem and what did you do? Thank you

[marysunn]

Hi, I am sorry to know treatment did not work out for you. I am not an expert but from what I have read surgery is one of the methods treating endo that should be personalized. All the best

[StageIVEndoPt]

I'm so sorry and this has been my same experience for the last eight years, having eight different surgeries with Endo pain coming back either immediately or worse than ever six months past. I finally found a group of peer reviewed specialists who educated me about the fact that most surgeons who say they remove Endometriosis, don't really know how to recognize it or don't actually totally remove it. I researched through Endometriosis Summit and found a platform called ICareBetter and had surgery with one of those surgeons just last year and I swear all the pain is gone. Now I am just dealing with muscle aches and pains. This is not to say it won't come back, but I found that it really made a difference finding a surgeon who specializes in this, like at a center solely for Endometriosis, like Center for Endometriosis in Atlanta, or Pacific Endometriosis and Pelvic Health in the PNW. I had a free consult with Dr. Vidali in NY and he helped me find a surgeon closer to myself. I am so sorry you are still having pain. It's totally unfair. After each of my prior eight surgeries, my doctors told me it was all in my head. It was a very sad time for a long time because I knew my body wasn't lying to me, but the doctors stopped listening after they did their surgeries. I hope you find help and support and please know you are not the only one, that I believe you, and that it is worth the fight to find better care. Don't give up. The road is long and hard sometimes, but it's worth it to fight for your life. You are worth it.

[auntiejessi]

What kind of surgery did you have?

I had 3 laparoscopies done (this was way back in the 1990s), and none of them helped. They create scar tissue - any surgery does - and the scar tissue can cause more and/or different pain. A lot of your pain will depend on where your endo is - if it's on a nerve, or if it's on your bladder, etc.

If they removed all the endo, you might get some relief, but it can grow back. Are you on any kind of treatment for it, like the birth control pill or anything?

https://www.healthline.com/health/endometriosis/latest-endo-research#treatment - there are new treatments now.

I ended up having a hysterectomy and my ovaries removed, but they aren't doing that as much now, and it's really, your absolute last resort. I also had other issues that contributed.

I'm sorry you're going through this. It's really the most frustrating thing.

[Rin93]

I had a laparoscopic surgery I'm on birth control. My endometriosis was pretty much everywhere. My ovaries, bladder and on the inside and outside of the peritoneum. I've been reading about different shots that basically make your body to into menopause. Thinking maybe that's the way to go. Has having a hysterectomy plus ovary removal helped? Did it cure you?

[auntiejessi]

You must have been reading about lupron or another similar medication. Some women get a lot of relief from that. I didn't, but many do.

For me, the hysterectomy was the best decision I could have made. It's absolutely a surgery of last resort, because it is definitely life-altering, and it's not considered a cure, but for me, it worked. Mine was bad enough to be eating holes, as my doctor put it, in my pelvic cavity. It really, really sucks.

Research the shots and hysterectomy like crazy. There are pros and cons to everything. Only you can decide what's right for you. Many doctors won't do a hysterectomy for endo now, but regardless of what you decide, the thing that worked best for me was that my doctor had a long history of me complaining about my pain. Don't hesitate to let your doctor know how much it hurts, if sex/orgasms hurts, how bad your periods are, if your daily activities are affected, how your family is affected, etc. Get all of that on record.

Again, I'm sorry. I know it sucks.