Stacey and Leah Raymond are a Brooklyn, NY couple who know firsthand the difficulties of dealing with endometriosis: Leah (above, right) was diagnosed in March 2015, and had excision surgery in 2016. The couple recently sat down with The Endometriosis Foundation of America to share their story and how they're helping to educate others about the disease.
EndoFound: What did you know about endometriosis before you met your wife, Leah?
Stacey: I had heard of endometriosis, but I didn't know much about it. The only thing I really thought endometriosis was, was that your periods were irregular. That's basically all I really knew, and that maybe you had some more intense cramps than other people.
EndoFound: What is it like watching your wife experience endometriosis-related pain?
Stacey: It's heartbreaking, honestly. It's heartbreaking because sometimes I'll wake up in the middle of the night when Leah is on her period, and I'll be like, where is she? She'll just be laying in the bathtub because that is the only thing that will help her. So, it's heartbreaking when there is only so much I can do like if her lower back is hurting I can offer massages, but sometimes that makes her more uncomfortable. Or, just little things here and there, but it's hard. It's heartbreaking to be around in moments.
EndoFound: How has endometriosis impacted your life together?
Leah: More before I had the surgery there were, I remember, multiple times we had planned events, people having get-togethers that Stacy went without me because I felt too miserable to have fun And now not really as much although it's hard to not be moody and emotional when you don't feel physically well so I know that affects us. It's just sometimes in general.
Stacey: I think a little bit in terms of say we have a weekend coming up, every once in a while it has come up where maybe let's go to the beach well, I know I'm going to have my period...
Leah: I'm not in as much pain but specifically going to the beach even if you're not, depending on what you're wearing at the beach, I wore a shirt but just being in that situation outside and hot and the water, being bloated or feeling physically even tired. The beach takes a lot of energy.
EndoFound: What advice do you have for others who want to support their partners with endo?
Stacey: I would say to listen to your partner, to in no way downplay or poopoo their comments on being in pain or being uncomfortable. That it's real. That it's oddly a condition that not many people know about, but the people who have it definitely know that they are suffering and to just be present and helpful and have supplies on hand and that they may need when they are dealing with the symptoms.
EndoFound: Have you told your friends and family about endometriosis?
Leah: I have a friend who has posted about pain a couple of times and being able to share my experience and hopefully one day it's something that everybody knows about or at least is on the tip of a gynecologist's tongue so when you come in with symptoms they sort of start exploring that, so if I can help in any way with that, that would be positive, or is positive.
Stacey: I've had friends saying, "My periods are so terrible." They may just think this is just kind of how it is and I've sort of said you know, my wife has endometriosis, and maybe that's something that might be worth looking into. You might have it as well, and there are options, surgery, and stuff, that could help alleviate a lot of that, so I guess it's helpful in that way that it's made me aware enough to communicate to other people.
*Patient stories submitted to Endofound.org are the views of the patients and not necessarily those of the foundation.