Celiac Disease and Endometriosis: A Series of Unfortunate Events
Interview with Endometriosis Patient Lena
Lena’s life was marked by severe pain during her periods, to the extent that she could not leave her bed. At 26, she opted for surgery to address her symptoms. However, even after the operation and with a confirmed diagnosis, Lena finds herself isolated. Even her gynecologist questions the presence of endometriosis. We had a conversation with her.
Hi Lena, thank you for joining us today to discuss your experience with endometriosis. Can you please introduce yourself briefly and share a little about yourself?
Lena: I’m Lena, 26 years old, and I received my endometriosis diagnosis in February of this year.
What does endometriosis mean to you?
Lena: Honestly, I’m still trying to figure that out. It feels somewhat elusive. I haven’t quite grasped what it means to me yet. Unfortunately, I haven’t received much information either. I’ve done a lot of research online, but I still haven’t found a perfect solution, which might not even exist.
Please tell us about your medical history leading up to your diagnosis in February. Was this period challenging for you?
Lena: I’ve always experienced significant pain during my menstrual periods, but I didn’t think much of it. My mom told me it was normal and that she had similar experiences. I never discussed it with a doctor. I thought it was normal to lie in bed for days, take painkillers, and hope for relief. Now, I know that it’s not normal, but it was a long journey to that realization. I even tried different birth control pills at one point, but I didn’t tolerate any of them well and stopped taking them. Eventually, I started experiencing severe pain not just during my periods but also outside of them, particularly during ovulation. I visited the doctor multiple times because the pain was so debilitating that I couldn’t walk, and he suspected endometriosis. I had never heard of it before and initially downplayed it, thinking it wasn’t that severe. I didn’t have surgery right away, and my doctor assured me that I didn’t need to be concerned about fertility for a while. So, I had a tentative diagnosis but no concrete solution.
It did get worse over time, to the point where I experienced intestinal bleeding and couldn’t walk at all. That’s when I had the surgery. However, after the surgery, I didn’t receive much detailed information except that endometriosis lesions were found. During the post-operative discussion, my gynecologist claimed I didn’t have endometriosis, even though the hospital had told me otherwise. To this day, I don’t know precisely what was performed during the surgery.
It is frustrating that you had a similar experience of being left to deal with it on your own. I encountered a similar situation after my very first endometriosis surgery. I visited my gynecologist at the time, who had been dismissive for years, and she had the surgery report in front of her confirming that my entire abdomen was filled with endometriosis. However, all she told me was that everything had gone wonderfully; all the endometriosis sites were removed, and nothing was taken out. I was scheduled for another major surgery, but she excused her misleading information by suggesting that surgery reports can be very opaque. I had read the report, and it made an obvious statement. Gynecologists like that make me incredibly angry.
What are your plans moving forward? Did you seek treatment at an endometriosis center or a regular hospital?
Lena: I went to a regular hospital because my doctor mentioned that all surgeries were postponed due to the pandemic. At an endometriosis center, I might have had to wait longer for an appointment. Since my situation was urgent, I followed my doctor’s advice and visited a regular hospital. She also mentioned that I might need two surgeries, but I still don’t know what was performed. There also seems to be an issue with the histology if something was sent in incorrectly. I’ve read the surgery report, and while I understand it somewhat, I’d like a more precise explanation of what it all means. Unfortunately, no one has been able to provide that explanation yet.
I would strongly recommend seeking care at an endometriosis center. It would be best if you asked your doctor for a new referral to have a closer evaluation. If it is urgent, an endometriosis center should be able to accommodate you. The specialists there are experienced with endometriosis, including intestinal endometriosis.
Lena: I’m actively trying to find a solution because I experience pain almost every day. I reached out to my gynecologist, but the receptionist told me that it’s normal to have pain with endometriosis. I feel like I’m not being taken seriously.
What limitations did you face in your daily life before your diagnosis?
Lena: I endure tremendous pain when walking, lying down, sitting, and even after physical activity. I attempt to lead an everyday life, but it’s very challenging as I’m not receiving any medication or other forms of therapy that could help me.
Do you openly discuss your symptoms with your family and friends?
Lena: Yes, I do. I also talk about it with my colleagues at work, and they are understanding, although sometimes they may not fully comprehend because the condition isn’t visible. People may not know why I still experience pain after surgery since endometriosis is a chronic condition.
Have you turned to online resources like Instagram and Facebook to gather information and connect with other individuals with endometriosis?
Lena: Yes, that’s precisely what I’ve been doing. I’ve found a wealth of information on the internet, especially on Instagram, which I wouldn’t have obtained otherwise.
Does knowing that you are not alone and that there are other individuals with endometriosis bring you some comfort?
Lena: Yes, it does. What’s particularly valuable is that there are many helpful tips you can try for yourself. It is best to determine what works best for you because it’s not a one-size-fits-all situation. I also had a phone conversation with the Endometriosis Association, which was extremely helpful and much more insightful than any discussion with a doctor.
At least you are exploring different avenues. Have you taken any steps on your own to improve your condition?
Lena: Yes, I certainly have. I received dietary counseling because I also have celiac disease and inflammatory bowel disease. I inquired about tips for managing endometriosis during my appointment. I was told there wasn’t much you could do, but it’s advisable to follow an anti-inflammatory diet. I’ve been gluten-free for four years, anyway.
How do you cope with the information you come across online, which can sometimes be scary, especially when you are unsure if it applies to you?
Lena: That’s indeed a challenging subject. I try not to dwell on it too much because I don’t know if it is applicable to my situation. It’s undoubtedly disheartening to read about the potential complications and reduced fertility associated with the condition, but I don’t know what precisely applies to me. My gynecologist expressed a preference for me to get pregnant immediately without even asking if that’s what I wanted. He simply said that I was old enough now.
Doctors should take a more patient-centered approach and not pressure individuals into decisions. It is essential to consider the patient’s unique circumstances and desires.
How does your mother cope with the news of your endometriosis diagnosis?
Lena: When I received the diagnosis, I suggested she read the book “Not Without My Hot Water Bottle.” I was reading it then and thought it might provide a more understandable explanation than me trying to describe everything. She was pretty shocked. She hadn’t realized that the symptoms weren’t typical because she had always experienced such severe pain. She does her best to support me in any way she can.
What are your hopes for the future?
Lena: Firstly, I hope to have a well-structured plan for managing endometriosis and to find my way because I don’t want endometriosis to dictate my life, even though it naturally has an impact. For instance, I don’t want to have a child solely because of endometriosis. That’s not a reason for me, and I believe doctors shouldn’t even suggest it. I have numerous doctor’s appointments shortly, which may be frustrating, but I’m trying to find a solution for myself.
It is essential to stay resilient and not be deterred, whether by doctors or anyone else. Chronic pain can be extremely challenging, especially in uncomfortable situations. I suspect that even trips to the bathroom can be excruciating if you have experienced intestinal bleeding. Unfortunately, discussing these issues is often considered taboo.
Lena: Yes, I do experience pain during bowel movements, and this was a topic I discussed with a doctor. I even saw one who suggested there was no medical reason for it despite knowing I had endometriosis. She implied that it must be psychological as if my pain was due to stress related to concerns about fertility. It’s been a bit of a struggle to obtain referrals to specialists who often lack knowledge about the condition. That can be pretty frustrating.
I can understand your frustration. While you may like your gynecologist, it might be worthwhile to seek one certified as an endometriosis center. Specialization in the field can be beneficial, and most importantly, you will be taken seriously, even for “minor” issues. Endometriosis centers in hospitals also offer outpatient consultations and do not necessarily recommend surgery for every person who comes in.
Lena: When I manage to reach my gynecologist, he does take me seriously, and I can schedule appointments; however, the frustration lies in making calls and hearing the receptionist dismiss my concerns.
Thank you for sharing your story. I am sure it will be beneficial for other recently diagnosed individuals to hear about your experiences.
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