Living with Endometriosis
There have been many moments in my life as a woman that I have faced and felt the challenges of living in our society. To name a few, equal opportunity, sexism, harassment, I could go on and on!
I’m sure some of you reading this have experienced similar challenges. With that said, there is one challenge that I have not had to face personally, and that is living with endometriosis.
Did you know that 1 in 10 women are affected by endometriosis during their reproductive years? My older sister is one of them. I admire her for many things, including her vulnerability and willingness to answer some questions about her experience with endometriosis to share with all of you.
Honestly before my sister was diagnosed, I did not know what endometriosis was, and now I have realized, I’m not alone. Lack of awareness around endometriosis in both women and health care providers, may be one of the greatest downfalls of the women’s heath-care system.
Part of the reason for the lack of awareness is because many of the symptoms of endometriosis are considered “normal” for a woman to experience during a menstrual cycle. Part of writing this blog is to break that normalization and bring awareness to all of you.
Endometriosis and Infertility
Being diagnosed with endometriosis does not inevitably mean infertility, although it may have an impact on what the path of becoming pregnant looks like. There are different levels of how severe endometriosis can be depending on the case.
In the cases that it is most severe, endometriosis can cause damage to many organs including those that are involved in conception. With that said, communicating your needs and desires related to conception with your doctor is really important.
What someone who lives with Endometriosis wants you to know
As I mentioned above, my older sister was eager to share her personal journey of living with endometriosis with you. As her sister, I have witnessed first-hand the challenges and growth she has faced on her journey, although I cannot speak to her experience from her perspective. There was something beautiful about this experience in writing this blog and we both hope that if you do relate to her story that you find some comfort in knowing you are not alone.
Question: When did you feel like your symptoms began?
Answer: “ I had always felt like my periods were really bad from the start and thought that was just normal and how my body worked. I think around 20 was when I started to feel like it wasn’t normal and the pain, I was experiencing had a really negative effect on me.”
Question: What were the physical symptoms that you experienced?
Answer: “I had really severe cramping, back pain, heavy bleeding, fatigue, leg pain and nausea. Whenever I have my period, I can’t eat a lot because the endo on the outside of my stomach prevents my stomach from enlarging when it fills up with food.”
Question: Are there differences in your symptoms when you have your period vs. when you do not?
Answer: “The biggest difference is the pain is a lot more severe when I have my period.”
Question: When you are experiencing the physical symptoms, what happens for you emotionally?
Answer: “I feel really defeated, like my body is just defeating me. Then I feel bad because I can’t do things to my fullest potential because of the pain, I feel guilty because I can’t help with things I want to help with. I definitely feel resentful sometimes.”
Question: What was the process of being diagnosed with endometriosis like for you?
Answer: “The beginning was absolutely terrible, it kills me when I see other people going through this, it was so long and drawn out. I saw doctor after doctor who just did not believe me and told me it was all in my head, that medically I was fine. I actually was not formally diagnosed until I was 26 because of the lack of awareness around endometriosis and my ability to get the explorative surgery that I needed.”
Question: What was it like to receive the diagnosis?
Answer: “ I felt absolutely relieved, it felt so good to hear the validation that I wasn’t crazy because I knew I felt like something was wrong. Once I did get diagnosed, I just told myself okay, now I have this new world I need to discover but I felt so relieved and validated.”
Question: How did life change for you after the diagnosis?
Answer: “At first, I just had to wrap my head around it, it was definitely a lifestyle thing. It is an ongoing journey of trial and error for what makes it better for me. I stopped drinking alcohol all together. The most important thing for me was learning how to listen to my body, I had to learn to be okay with resting when my body was telling me that I needed to.”
Question: Do you have any tricks up your sleeve on what has helped you cope with Endometriosis?
Answer: “ I think humor and sarcasm has helped a lot, along with creating a support system, and being honest with myself and those around me.”
Question: Did the diagnosis have an impact on your sex life?
Answer: “ In the beginning, before I received my diagnosis it was really hard. The entire process of having the pain and not knowing what it was, I just didn’t want to have sex. Having sex hurt, I was in and out of the doctor’s office and I felt like my vagina was only a medical area, I couldn’t have pleasure. I had such a lack of desire because I just thought of my vagina as a medical diagnosis, not something that I could get pleasure out of. All of that lasted for about three years. After I received my diagnosis my partner and I started to have more of a conversation about what sex would look like for us. We talked about how sex was really important for our relationship and we wanted to figure it out. I realized it was more of a mental thing for me, now it’s so much better! It’s been like two and a half years of our sex being really good, the more we started to have sex the more desire I had to have it.”
Question: How has the diagnosis impacted your romantic relationship?
Answer: “In the beginning my partner just didn’t know a lot about endometriosis, he was always supportive but just didn’t know what was happening to me. The more he saw my experience, did his own research, and attended my appointments he realized how real my pain was. We have really grown in communicating our emotions. We worked together on how we can manage my diagnosis and our lives together, the sex part was huge.”
Question: In relation to you and your partner trying to conceive, could you share what the conversations with your doctor have been like?
Answer: “When I was first diagnosed it was really frustrating, my doctor would say that if I were able to get pregnant, it would cure me from my endometriosis. I heard this for the first time at 26, to hear that this may be the only way to relieve me from my diagnosis and knowing that I wasn’t ready for pregnancy was frustrating. Now that my partner and I are ready and trying to conceive, I feel that I have been able to get support from my doctor and have had conversations regarding testing my fertility. We will cross that bridge when we get there.”
Question: Have there been any physical or emotional challenges you have faced in trying to conceive?
Answer: “Physically, I’m underweight as it is, so that makes it hard to conceive. Emotionally, there have been a lot of times where I feel like it’s a job which makes it pretty unenjoyable. I realized that I got lost in tracking and making sure I was doing everything “right”, it started to become a chore which was not fun. Recently, I actually cut myself off of tracking and trying to control it and now I feel so much more relaxed. There are times where I’ll think I’m experiencing a symptom of pregnancy; I’ll get really excited and then find out that it isn’t. Those moments are really hard, because it brings me back to that feeling that my body is defeating me and it’s sad and disappointing.”
Question: What do you want people to know about the symptoms and diagnosis of Endometrioses?
Answer: “ Don’t ever give up! Self-advocacy is vital. There were so many times that I went to the doctor and told them that something was wrong, it took seven years to get a diagnosis and that’s so common, how sad is that?”
Question: What do you want people to know about trying to conceive with an endometriosis diagnosis?
Answer: “ Do not google things because you are just going to get inside your head and go down a rabbit hole. Be open and communicate with your partner and doctor.”
Question: From your perspective, what does unhelpful support look and feel like?
Answer: “I think the hardest part is that it is so invisible, and people sometimes think that if they can’t physically see that something is wrong with you that you have to be faking it. I’ve heard things like, you don’t look sick, or you don’t look bloated. And people trying to tell me how to fix what I am experiencing or telling me to try and relax. The worst is the unsolicited advice, really just feeling invalidated.”
Question: From your perspective, what does helpful support look and feel like?
Answer: “ The best is when people actually take time to listen to what I need in whatever moment I am experiencing. Giving me the validation that what I am experiencing is real, that it is okay for me to rest, and listening rather than telling me what I need to do.”
How can we support you?
After having this conversation with my sister and hearing her share her experience, I was reminded of how important it is for people who experience endometriosis and/or infertility to know that they are not alone. As one of my sisters’ biggest cheerleaders, I know that I may not be able to support her in the same way that someone who shares this experience can.
Even if you feel like you haven’t experienced all of the symptoms that have been shared in her story, that doesn’t mean that what you are experiencing isn’t true to you. We both want you to know that you are not alone and there is help and support.
1. Contact Emma Schmidt and Associates to request a free Counseling consultation.
2. Meet with a skilled therapist for Counseling through our HIPAA compliant platform.
3. Begin online Counseling and begin your journey towards mental wellness, health, and happiness.
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The therapists at Emma Schmidt and Associates are skilled relationship and sex therapists. However, that’s not the only mental health service they offer. Our therapists treat general mental health and relationship concerns. We offer anxiety treatment, depression treatment, trauma and PTSD treatment, EMDR, and relationship and couples therapy. In addition to offering online therapy in Ohio, we also offer online therapy in Kentucky, and online therapy in Indiana. Contact our office to learn more about the many ways our team of skilled clinicians can help you thrive.