Community Experiences with Hysterectomy

Endometriosis is tough to live with. Not only is the physical pain often intolerable, but the answers to dealing with it are not often as straight-forward as anyone would like. Often, a doctor will make a suggestion for surgery. If the endometriosis has not responded to other courses of action, sometimes a hysterectomy is recommended.

We wanted to hear about your experiences, and if a hysterectomy procedure provided you relief. To hear more, we reached out on the Endometriosis.net Facebook page and asked: “Have you had a hysterectomy due to endometriosis?” More than 150 of you shared. Here is what you said.

“Yes! Hands down best decision ever!”

For many of you, a full hysterectomy brought total relief of symptoms. Although a hysterectomy is not a cure for endometriosis, it may help with pain. Sometimes, doctors will recommend the hysterectomy, which is the removal of the uterus and cervix, but they may also recommend removing the ovaries as well. Each doctor's recommendation may be different.

“Yes! Hands down best decision ever!”

“I had a total hysterectomy two years ago. It was the best thing I ever did.”

Depending on how endometriosis affects someone, it may be possible for surgeons to perform a partial hysterectomy to provide relief. A partial hysterectomy includes the removal of the uterus, but leaves the cervix in the body.

“I had a partial; they removed uterus and tubes. I kept ovaries and cervix. I had so much trouble with polyps and just build up in my uterus of old blood and endometrium. Healing is the only hard part.”

“My partial hysterectomy at age 23 was the best thing.”

“I had a partial hysterectomy. I kept an ovary. I still deal with endometriosis issues. I just do not bleed like I used to. I can feel ovulation and get bloated and painful during my cycle.”

“When they did the procedure, they found that the endometriosis had also infected my appendix.”

For many of you, the surgery was needed, and it allowed your doctors to see where else the endometriosis had spread. It can spread throughout the pelvic region, including the bladder, bowel and the reproductive organs.

“I have stage 4 endometriosis. I have had 4 laparoscopic surgeries and an ablation, and next month I am scheduled for a full hysterectomy. My doctor wants me to see a gastroenterologist because he found endo on my bowels that he could not remove because it wrapped all the way around the bowel. I have already been to see the urogynecologist because I have endo on my bladder. I am just so ready to have all this done with as I am tired of the pain and bleeding. Some says I barely can function or get out of bed.”

“I had a full hysterectomy at 40. When they did the procedure, they found endometriosis had also infected my appendix and it was about to rupture.”

“Yes, I have had a full hysterectomy due to endometriosis. They took everything they could and scraped it off my bowel. I was only 6 months pain free and now I am having an operation to have a colostomy bag as the endo has damaged my bowel so much.”

“I have had 4 laparoscopic surgeries.”

Several of you have pointed out that the hysterectomy is often one of the later suggestions a doctor will make. The first line of defense is often a laparoscopic procedure. This is less invasive and allows a doctor to remove scar tissue, endometriosis cysts, and endometriosis growths. Sometimes it works, but sometimes it only buys a person time before later procedures are recommended.

“Yes! Stage 3 survivor. Partial hysterectomy after 4 laparoscopy procedures was best thing I ever did. I could not do the pain and fatigue anymore.”

“I have had a total of 4 surgeries: laparoscopy with endometrial ablation, laparoscopy with “clean out,” partial hysterectomy with one ovary and cervix left, and then total hysterectomy.”

We want to say thank you to everyone who shared their experiences. Thank you. Your shares can help educate and comfort other members in the community.