Week 4 for Blogging for Endomarch: Interview with fellow marcher Melanie

Week 4 for Blogging for Endomarch: Interview someone you know who is going to the march and post the interview.

I have interviewed my Endosister Melanie from Long Island, New York. She and her husband are heading to the March. Melanie is a staple in the Endometriosis Twitter Community. You can learn even more about Melanie’s struggle with endometriosis and infertility on her wonderful blog:

·         When Melanie first diagnosed with endometriosis? Melanie was officially diagnosed with endometriosis in June of 2010.

·         How many surgeries have you had so far for endometriosis? Melanie has had 7 surgeries for endometriosis.

·         Why are you attending the MWMFE? Melanie is attending the MWMFE so that the community can come together and educate everyone else in the world who does not know about endometriosis. She also hopes this will help find a cure for those women diagnosed in future generations.

·         What do you wish everyone knew about endometriosis? Melanie wishes everyone knew that endometriosis is NOT just a once a month occurrence. Endometriosis is a life changer. Melanie says, “I am not the same person I was before my struggle with endometriosis. It can take a lot away from you.”

·         Did you know what endometriosis was BEFORE you were diagnosed or AFTER? Melanie had heard about endometriosis before she was diagnosed. She had two friends that had been diagnosed with endometriosis. But Melanie admits, “I did not know the extent of it.”

·         What frustrates you the most about endometriosis? Melanie exclaims, “Everything!” frustrates her about endometriosis. Melanie spoke a lot about how it is unforgivable that doctors who treat patients with endometriosis are not mandated to go for continuing education to be aware of the latest and most effective treatments for the disease. It exasperates Melanie that doctors that practice near her do not even like to be questioned by self-educated patients. She feels that so many women have endometriosis, 1 in 10, and most of the medical community does not even make an effort to stay on top of the best way to care for a patient.

·         What is a common misconception people have about endometriosis? Melanie feels that most people are not aware that the pain from endometriosis can come at any time, and often women with endometriosis are in pain every day.

·         How has endometriosis affected your life in a negative way? Melanie describes how her confidence has been greatly affected by endometriosis. Growing up she felt certain of many things in her future, one of which was becoming a mother. Now endometriosis has taken a lot of things away from her, including having biological children. Melanie states that she is working on her self-confidence and it is slowly coming back.

·         Who in your life has been the most supportive of your battle with endometriosis? Melanie feels that her husband and her parents have been most supportive to her during her battle with endometriosis. Both of them have supported her emotionally and financially.  She feels that her husband is her best friend and her rock.

·         How has having endosisters in your life affected you in a positive way? Melanie is extremely grateful for her endosisters, especially the ones from Twitter! Melanie gushed, “They are life savers! Mostly everyone thinks we are crazy. But they know exactly what I am talking about all the time!” She feels that they are always there for her, especially through the tough times.

·         If you could say something directly to medical professionals about endometriosis what would you say to them? Melanie pleads with doctors to get better diagnostic tools and treatments for endometriosis. She implores doctors to continue their education and stay on top of the latest treatments. She also wants excision surgeons to start taking insurance so that those who do not have the monetary means can afford treatment.

·         Which body parts were most damaged by your endometriosis? Almost everything in Melanie’s pelvic cavity has been impacted by her endometriosis. Melanie’s tubes are gone and her ovaries and uterus are in bad shape. Her culdesac has been obliterated and her intestines have never been the same since endometriosis has been found on them. Her ureters and bladder are also affected. She also lives with constant heart burn and acid reflux.

·         If you could describe the pain caused from endometriosis…..what would you say? Melanie feels that there is not only physical, but emotional and mental agony from this disease. But if she could describe the physical pain she said, “It feels like being stabbed in the vagina, kicked in the back and that someone is wringing out her uterus, like a wet towel.”

I am so grateful Melanie spent her lunch hour speaking with me to raise awareness for the MWMFE. She is a fighter and a survivor and it was amazing speaking with her. Make sure to check out herblog!