When I heard Sophie’s story for the first time in 2019, I was shocked. Sophie had lived with Endometriosis since she was 13 and it wasn’t until she was 27 that she was officially diagnosed with the condition. Her story has so many twists and turns, so much so that I knew I wanted to share it with the ReproRants audience. I am hoping that this interview will resonate with you. If you suffer from similar symptoms, we encourage that you go to an endometriosis specialist so that you can be diagnosed properly. Don’t be afraid to stick up for yourself!
On December 10th, I connected with Sophie over Zoom to get the details about her Endometriosis.
Ferheen: How did your Endometriosis manifest? What was your experience?
Sophie: The main symptom, and the most common one, is menstrual cramps - pain during menstruation. I think it started when I was 13, but I was 27 when I was diagnosed with endometriosis. The pain changed a bit over time. In the beginning, it was painful for two to three days a month, and the second day was always the worst. Over time, it became two and then near right before I was diagnosed, it was more like three. It's really tough to diagnose endometriosis because so many women have menstrual cramps. Oddly enough, I was aware of what endometriosis was for a very long time, because I googled it! if you google menstrual cramps, you will find endometriosis as one of the two main causes: There is primary dysmenorrhea, which is endometriosis, and secondary, which is menstrual cramps that just occur that no one really knows why but they're not dangerous. [Editor’s Note: it's actually that primary dysmenorrhea is without a cause and secondary dysmenorrhea is one with a specific cause, which could be endometriosis among other things] I was always aware of it because it was actually so easy for me to find out about it. I always assumed the doctors knew about it, because I knew about it. I always spoke about my cramps to doctors starting at 15 when they started to prevent me from going to school sometimes. I asked my pediatrician, “I have painful cramps. Is that normal?” But they never mentioned the word endometriosis. They never did. I think my pediatrician did order an ultrasound when I was a teen, but my scan came back clear, so my symptoms were dismissed.
Ferheen: What about when you were older?
Sophie: After a really bad month with a big cramping episode, I would not always initially go to the doctor. But every time I'd go to the doctor, I'd mentioned, “it's still painful, it's still painful.” And they would always tell me, “it's normal.” Actually, at the age of 16, my General Practitioner (GP) who was a woman said, “I had the same when I was growing up. It sucks, but it's normal. And it'll go away when you have kids.” And I was 16. I was wondering, is she encouraging teenage pregnancy? I didn't dare speak up at the time.
Ferheen: Did they give you medicine?
Sophie: Every time, they just prescribe painkillers. Everyone had a different idea about what painkillers I should be using. They're all variations of ibuprofen.
Ferheen: That makes sense. Ibuprofen is an anti-inflammatory and scientists think there is a link to the inflammatory response with Endometriosis. But even then, that is just suppressing the pain, but not doing anything to help the root of the problem.
Sophie: No. I can't tell you how many doctors I've seen over the years, probably seven to eight, and I’ve mentioned the cramps to every GP. I was still very young and hadn’t seen a gynecologist. I didn’t know if I should go see one, but I was a little scared. My mom did mention it to her gynecologist, who always said it was normal. You have friends who have cramps and it's very common right? So you have your friends who have cramps and they're being told the same. Even if they're not doing well and they might miss school, you come to think that’s normal.
Ferheen: Did the painkillers work?
Sophie: Yes. The issue was not that they didn’t work, but more like they didn’t last long enough, so I learned over time how to space the painkillers. I was always on like the maximum dose. For example, I would time it so that if I had a test that day in school, I would take it an hour before. I was always hoping that an exam would not be on the same as my period because of the pain.
Ferheen: I can’t imagine the mental load that must take up. You’re trying to prepare for this exam, but then you have to constantly remind yourself that you could potentially have cramps, so you have to prepare for the test AND cramps. That’s ridiculous.
Sophie: I had fairly regular periods, so I always knew a month or two ahead. With the right painkillers, it was manageable for many years, but then it got worse. I had a really bad month, so I went to the University Health Center, and the doctor advised me to start taking the pill [estrogen and progestin “birth control” pill]. It was a bit better for one or two months, but then the pain would come back after three months. I remember trying five or six different types of pills, and some had awful side effects like depression. So I stopped.
Ferheen: So what was the turning point?
Sophie: It was March 2018 and I was in my PhD program, about to go to India for a research project. The pain was so bad that for three consecutive days, I could not walk. I stayed in bed for three days because walking was painful. I have seen doctors in France, doctors in the US, doctors in Singapore, and everyone has told me that my pain is normal. But this time, I can’t walk and painkillers are doing nothing. However, I thought “this is normal” because everyone told me it was normal, but I also thought “this is different.” On day 3, it started getting better but with every step, I could feel pain in my abdomen. I went to the doctor who gave me the pills previously. I asked to see a gynecologist, but the health center denied the request. I will never forget the words she said when she examined me. “Your pain is still within the realm of normal.” Because I only had pain during my period and no other typical Endometriosis symptoms, she said, “you most likely do not have endometriosis.” This was the first time someone said the word endometriosis. I asked if I could see a gynecologist because my pain was escalating. I couldn’t walk for three days! The doctor put in a referral but also cleared me to go to India for field work.
Ferheen: Oh no.
Sophie: I went to India, but then my next period was just as bad - no, it was worse. I couldn’t walk again, I couldn’t eat, and I felt like vomiting. But I didn’t worry, because the same thing happened the month prior, and the doctor told me it was fine and normal, right? Day three, I’m still not worried, but then the pain continued to day four.
Ferheen: You have been gaslit by literally everyone who has told you that your pain is normal.
Sophie: This time, I’m embarrassed because I’m in India, I have to tell my male colleagues that I am not feeling well but can’t explain why. I wasn’t really hungry, and I didn’t eat for three entire days. On the fourth day, I started vomiting. I began to worry that I have appendicitis, because I am so convinced my period pain is normal. I thought I was going to die. I began to text people asking about local hospitals. I emailed the University Health Center for advice and asked family members who are doctors as well. None said I should go to the hospital, but to take painkillers. The University Health Center gets back to me and says “have you considered a hot water bottle?” I went to the pharmacy in India to get pain killers, but after I started throwing up, I decided to go to the hospital. It’s 4 AM, my gut is telling me that there is something wrong. A colleague took me to the hospital.
"The soup picture was taken sometime during those 4 days of pain. I couldn’t eat anything so I ventured to the nearby mall to buy some soup. I remember forcing myself to eat it."
Ferheen: AHHHhhhhhh.
Sophie: So I get an ultrasound at 8 AM and two shots of some painkiller. The doctor explains that the ultrasound shows that I have a cyst on my ovary that is about nine centimeters, and it is most likely due to endometriosis. She also said there was torsion, that if the cyst was wrapped around my ovary, it could cut off the blood supply and I might lose my ovary. My first reaction was that this hospital has no idea what they are doing because I’m so convinced I have appendicitis, because I have been told that my cramps are normal. I've been brainwashed to think that my cramps have been normal since the age of 13. For 14 years, my cramps were normal and suddenly the doctors at this hospital were telling me they're not normal, that I have a cyst that's nine centimeters, and that I might lose an ovary if I don't get surgery in the next two hours. My first reaction was that they don't know what they're talking about.
Sophie's Ultrasound Scan
Ferheen: So what happened next? Did you have the surgery at the local hospital?
Sophie: It wasn't clear if it was torsion or not, or how urgent it was. I called my friend who's based in Delhi, and she told me to come to Delhi because she knew a good hospital there. At this point, I'm like, okay, I might lose my ovary, but Delhi is a one hour flight away. My friend knows a good hospital and I can stay with my friend, which seemed like a better option. Unfortunately, the flight was delayed and I missed my appointment at the Delhi hospital. My journey started at 4am and it was now 5pm. I'm at the hospital and I go see a gynecologist who tells me the exact same thing that the previous gynecologist told me, that I have a cyst. She said that it could be torsion and that I may need to get surgery right away. In Delhi, I was told to get a second ultrasound, but I couldn't get one because I didn't have an appointment. I finally managed to see an ultrasound specialist, who took another look at my ultrasound, said I didn't have torsion, and determined I didn't need a 2nd scan. So now I’ve had two gynecologists tell me that I might lose an ovary, but this specialist says I’m okay. By this point, my pain is gone and I haven’t eaten for three days because people kept telling me not to eat because I might get surgery.
"I visited the Taj Mahal with a friend the weekend before my surgery. My pain started on Monday. The day before I was at the Taj, perfectly fine!"
Ferheen: So did you have the surgery at the hospital in Delhi?
Sophie: Well, I don’t know who to trust anymore. I went to my friend’s house after being discharged to take a break, eat food, and figure out what to do next. My relatives in Singapore told me to come to them and get an appointment with a gynecologist, so I booked a 1 AM flight that night. During the flight, apparently everyone was worried about me because it's a six hour flight and I can't give any sign of life, but I slept like a baby. It was great. I had no pain. Everyone thought I'd be in pain but my pain was gone. My period was over. I felt great. The next morning, I did see the gynecologist who confirmed the diagnosis of endometriosis, not torsion. He said we should get it removed today. I underwent surgery and it turns out the cyst had ruptured, so the surgery was more complicated and had taken a little longer. That is how I ended up being diagnosed and operated on surgery.
Ferheen: Wow. So what happened next?
Sophie: After the surgery, they didn’t give me much treatment, but only a leaflet on endometriosis, and a recommendation for an IUD. I went back to the US where I finally got a referral to a gynecologist. They recommended the Depo Provera shot, but it made me feel very dizzy. The pain was better though, but after a month or two, I still had pain around the surgery area. I was diagnosed with nerve pain and they diagnosed gabapentin. Stairs were painful and I couldn’t run. It’s still not entirely possible for me today. Since that surgery, I haven’t been myself. I’ve not been able to resume physical activity except light stuff. I can't wear jeans because it presses around the scar. Tights can be difficult. Since the surgery, I can’t wear certain clothes.
"Hospital in Singapore!"
Ferheen: You had a second surgery this past July. What was removed?
Sophie: Endometrial tissue that was near the ligaments between uterus and sacrum. That area had a lot of endometriosis. That was removed. There was some on the Pouch of Douglas, which they removed. Recently, I’ve had back pain because of Endometriosis.
Ferheen: How did they find that tissue? Did they do an ultrasound?
Sophie: After 2018, my pain came back. I went on another hormonal treatment in December 2018 because I was still bleeding so I stopped Depo and started Visanne (Dienogest) [progestin medication used to treat Endometriosis]. It’s specifically designed to treat Endometriosis. I improved until 2019. I went from multiple cramps a day to every day to a few days a week. It improved until September 2019 but Jan 2020, it started getting worse again. That’s when my cramps came back, all my symptoms came back but I wasn’t bleeding. I decided to seek out another doctor, a very famous surgeon in France who only specializes in endometriosis. I did an MRI in April and that showed some lesions in some areas where I was eventually operated on. That suggested I needed surgery and that I had been having back pain too. He said it could explain the symptoms because Endometriosis can also lead to back pain. That was new to me.
"The porter picture was taken at the airport. I wanted to show my family that I was taking care of myself and hiring someone to carry my bags for me (you can do that at Delhi airport). This is because after the surgery I was advised not to carry anything heavy."
Ferheen: The thing that pisses me off the most out of all of this is, why is it that the doctors, especially here in the US, didn't take your pain seriously? Your pain is so bad, that you can't go to school, and you can't walk. Why weren't you just given an MRI right away?
Sophie: Or even an ultrasound because I had a nine centimeter cyst. You can’t always diagnose with an ultrasound but mine could have been seen. Some doctors tell me that cysts can grow really fast. I know so many women who likely have endometriosis but I only know ONE woman around my age that has been officially diagnosed. I know a lot of older women who have it but they are usually diagnosed when they can’t conceive. Then they get all of these scans.
Ferheen: A woman’s worth is her ability to have children, so if you can’t have children, then they’re going to do all of these tests. But if you just have cramps, it doesn’t matter because “the moment you have kids, it’s going to go away.”
Sophie: But it’s not even true! It seems there is a chance that it will improve your pain, but that’s not proven - Just like how a hysterectomy doesn’t always solve the pain.
Ferheen: So what do you recommend to others who are going through something similar?
Sophie: Go to a specialist that understands Endometriosis. I am doing physical therapy right now with a specialist, and my new GP has a sister that has Endometriosis so he never questions my pain.
Ferheen: Thank you so much for doing this interview with me, Sophie! I hope your story inspires others who suffer from similar pain to advocate for themselves.
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