ENDOMARCH HQ (HQ): Autumn Mendoza Montgomery, thank you for agreeing to be interviewed for the Endo Uprising Digital Magazine! We are so excited to be able to get to know your story and shed some much-needed light on this horrible disease. What were the first symptoms you experienced with Endo? How did your symptoms progress? Do you have classic endo symptoms or atypical? When did you first hear about endo and when did you think you may have it? How long did it take you to get diagnosed? What is the hardest part about your Endo?
AUTUMN MONTGOMERY (AM): I had been on birth control since I was 14 after having a very abnormal and bedridden menstrual period, so it is unknown how long I have actually had it. When I was almost 25 I got off of birth control because it was affecting me emotionally. Then a few months later, as I was in the airport waiting on an international flight, I got the worst pain in my abdomen. I was so confused and concerned about what it was. The pain shot down through my legs making them almost numb, yet painful. I was crying and in the fetal position on the uncomfortable airport chairs.
Finally, when I got on the plane I realized that I had started my cycle. The pain didn’t minimize to a tolerable state for about 4 hours. A month later the same thing happened, at home, alone, as I was lying on the living room floor unable to move to get medicine or a heating pad. That’s when I made a doctors appointment. The doctor told me I PROBABLY had endometriosis, but there was no way to know for sure without surgery, which they wouldn’t do for diagnosis reasons only.
The hardest part about my endo now, is the unknown. Having to look at my calendar any time I make plans hoping it doesn’t fall on the first few days of my cycle while I am in immense pain. I am constantly on edge at work during those times just praying it won’t flare up until I am home.
HQ: What is your craziest doctors story? Either positive, negative, or neutral. Did you almost die from surgery or have you ever experienced severe adverse side effects from medications?
AM: I don’t really have a crazy story regarding Endo. Nothing in particular at least. To me, every monthly cycle is crazy because it is almost like I forget how unbelievably bad the pain is until it hits again.
HQ: The birth control pill or other synthetic hormone contraceptives are often prescribed as a first treatment for those with endometriosis. Have you had different hormonal treatments? If so what was your experience?
AM: I was given the IUD about a year after the diagnosis. The insertion while having Endo is a whole other thing. It eliminated my periods, therefore eliminating endo pain for almost two years. Unfortunately, IUD’s often cause ovarian cysts. It did this for me. I had several painful ones, but one that grew the size of a peach that rendered me practically immobile. I was on leave from work for weeks before finally getting surgery. The benefit from the surgery was that they were able to identify and remove endo from my ovaries. The recovery was not as I expected, and instead of missing 10 days of work like I was told, I ended up needing almost 3 weeks. They said that it is probably do to the fact that it wasn’t only a cyst removal, but scraping the endo probably left scar tissue that was taking longer to recover from.
HQ: The opioid crisis is at an all time high and very prevalent in the news. As a chronic pain sufferer, what is your opinion on the use and reported abuse of opioids? Do you think the crackdown on opioids should pertain to those with Endometriosis, why or why not? If you had chance to speak on Capitol Hill to lawmakers about this issue, what would you say? If not opioids, what alternative therapies do you think women with endo need to be informed about and that need more attention?
AM: I personally do not like taking any medications except Ibuprofen or Tylenol. However, these do not work for Endo. They don’t even take the edge off. I have Norco prescribed to me, but rarely ever take it simply because I do not like the way that I feel on it. Also, even the norco does not eliminate the pain completely. I would say for me it probably takes it to a healthy women’s very bad menstrual cramps. Not fun, but manageable. My doctor has recommended acupuncture to me but unfortunately it isn’t covered by my insurance so it is just not affordable.
I think the opioid crisis is a very real and serious issue. Unfortunately women with endo simply do not have a choice when we have a flare up unless you want to just endure the pain.
HQ: What do you want people to know about Endo and being an Endo Sister?
AM: This disease affects your whole life. It may seem minimal compared to other horrible diseases, but it needs to be considered one of them. No matter how spiritual, healthy or on top of it we are, it is always there. Sometimes I think it is a good thing that no one knows how it starts, so that I don’t blame myself. However, it is beyond frustrating when there is so little known about a condition that affects my whole life and puts me in such severe pain several days out of every month. Those of us who have it, please do not stay quiet. Talk about what its like, share your story. Because you are most definitely not alone.
Also, one thing that I haven’t read about anywhere but both my doctor and myself have experienced is pain during any other female procedure. Pap smears, although uncomfortable for all women, are extremely painful for me. IUD insertions, tampons, sometimes sexual intercourse, literally everything that has to do with that part of my body is painful most of the time.
HQ: Can you tell us about the journey that inspired you to tell your powerful story and fundraise for endometriosis? Was there ever a time where you were uncomfortable telling your story? Why?
AM: I am a very open person so I have never felt uncomfortable sharing my story. And I have always wanted to do more and help in any way I can. But this past February was really the pushing point for me. I was able to get pregnant, relatively quickly for someone with endo. But at 10 weeks, I lost the baby. There is no way to know for sure if it was natural causes or if endo caused me to lose my child. But at that moment, I promised my baby that I would do everything I could to help others with this condition so that they may never have to suffer the pain of a miscarriage because of this disease.
HQ: Where would you like to see yourself in 5 years?
AM: I would love to say that I will have a child by then. But with this condition, that is unknown. I would like to participate more and fight for awareness and a cure. And, on a far less happy note, if I have had a child, I will most likely be on a surgery table getting a hysterectomy. As hard as it is to make a decision to take out what I feel encompasses so much of my womanhood, I can’t imagine continuing to live my life in this kind of pain. I want my freedom. And at this point in the progress for a cure, a hysterectomy at 35 years old is my only option.
HQ: What is an insight or a piece of advice you wish someone would have told you when you first got diagnosed? Is there anything else you wish to say about endo, advocacy, awareness, or life in general?
AM: I am far luckily than most to have a wonderful doctor who suffers from endo herself (not that I am glad she suffers, but the care is so much more empathetic). When I was told, she was very informative and compassionate, giving me all the information she had as well as everything she herself had experienced.
There is one thing that I wish I would have known. I wish I would have known how much it would truly affect all aspects of my life. I was told it would be painful during my periods, but I never put together how much that would affect my planning, vacations, work schedule, relationships, etc. Perhaps it was better to not scare me all at once with this information, but it may have helped me sooner.
The one positive thing that I have gotten from dealing with this condition is an overall understanding of my body as a woman. I am so in tuned with my cycles, my pain, the overall state of how my body is feeling that it has given me a deeper understanding of myself. I can sense when the pain is coming, I can sense when I am going to have a flare up one day. Many women live without truly understanding what is going on within their body, endo has forced me to figure it out. I suppose you have to try to find the silver lining in anything, even pain.
HQ: Thank you so much again, Autumn, for taking time out of your busy day to bravely share your story, which will no doubt be a source of strength and inspiration for other Endo Sufferers, but can also help physicians and researchers gain further insight into the heterogeneity of symptoms & effects of treatment, which is absolutely crucial for improving treatments and steering us one step closer to the cure.