How my story begins: After we had moved to the U.S. when my son was around 1 year 5 months (in 2020), I noticed that I constantly had blood spotting after going to the gym, defecation, or any other physical activity, in general. I had to wear pantyliners all the time. I went to a gynecologist and told him about my “erosion” that was found before my delivery and about my spotting. He performed a pelvic examination and an ultrasound. He said he didn’t notice any “erosion” which was strange. He also performed a PAP test. I found out later that in the States you get tested for HPV together with your PAP test only if you are 30 or older. I was 29 years old back then.
It’s very sad as I had very suspicious symptoms, and they should have checked for that as well. The result of the PAP test was “NILM” which means that everything was clear. They said they didn’t know why I had blood spotting but suggested inserting an IUD. I feel like here no matter what kind of gynecological issue you have, doctors try to put you on some type of birth control. Is it some type of business, I guess? Anyway, I decided I might have had that spotting because of ovulation or something like that. However, with time I noticed more and more blood. My periods became unbearable, heavy, and with blood clots. I was so busy with work and taking care of my son that I couldn’t find time to set an appointment with a doctor. Plus, the recent tests were fine. At least, that’s what I thought.
In the summer of 2022, I started to bleed after intercourses. I also started to experience unbearable pain in the area between my uterus and rectum. I was even prescribed opioids which was kind of extreme, in my opinion. The second PAP test was performed which showed “RNILM” which means there were some changes or inflammation. And, finally, an HPV test was performed which showed Types 18 and 45. I started to research this subject more, read forums about cervical cancer and dysplasia, and started to realize that there was something wrong there… The colposcopy that followed these tests didn’t show anything bad though. At that point, my pain became so unbearable that I ended up in the Emergency Room several times which was very expensive. They performed a CT scan there that didn’t show anything except for some constipation.
After that, I tried to get an MRI here which was extremely difficult even though I was ready to pay with cash. I realized that the medical insurance company could’ve disagreed to approve that. It was very strange for me as in Russia you can get any test, any scan any time of the day at numerous state-budget or private clinics without any problem. Looks like everything is so monopolized here in the healthcare industry. After having a great deal of trips to different doctors, I finally found a doctor who suspected endometriosis. I had an MRI of my pelvis, and an explorative laparoscopic surgery was performed in terms of the possibility of endometriosis. Yes, that diagnosis was confirmed. The back area of my uterus next to my rectum had quite a big endometriotic lesion. That was the cause of my pain. However, instead of removing those lesions, the doctor just fulgurated (basically, burnt) them. All in all, the pain didn’t go away, but became more severe so that I couldn’t sleep or work and I constantly had bleeding.
I decided to fly back to Russia as my mom is a doctor there, and it would be easier for me to perform all the necessary tests there and determine my treatment. I had a long exhausting flight through Turkey (approximately, 2 days) because the “special operation” had already started, and a lot of flights were canceled. Once I got there, I went straight to an oncology center where they repeated my PAP test and HPV test. The pathologists confirmed “AGUS” (atypical glandular cells of undetermined significance). Then, she performed the biopsy during which she took quite a big sample. The biopsy result was “AIS” (Adenocarcinoma in Situ) and high-grade dysplasia which was, basically, Stage 0. After that, they performed a conization which showed clear margins. However, we decided to double-check that at a different laboratory which confirmed that margins still were not clear. Plus, “adenocarcinoma in situ” can be more aggressive than “squamous cell carcinoma” and you never know how the cells are scattered there. Plus, I still had constant bleeding, pain, and tiredness.
Life before my diagnosis: My story involves two countries: the USA and Russia. My son was born in Russia in 2018. My gynecologist in Moscow told me that she saw a huge “erosion” (cervical ectropion) on my cervix, but we were going to take care of it only after my delivery. She didn’t perform any PAP-test and/or HPV-test either. I didn’t realize back then how serious it could be. After my delivery, I successfully forgot about that “erosion” because I was busy with moving to my husband’s country, the United States.
My treatment: I was lucky to get into one of the best Oncological centers in Moscow to be treated by one of the best surgeons. I had a hysterectomy, but my ovaries were left.
How I felt after treatment: After three months after my surgery, my pain subsided significantly. I didn’t feel that severe pain and pressure near my rectum area anymore. But most importantly, I got rid of all these cancerous cells. Of course, I had some mental issues during this period and even paid for my PET-CT scan test to be able to calm down a bit. After my final biopsy and MRI, I flew back to the States in summer.
What was most difficult for me: I regret that I didn’t fly to Russia sooner so that I could’ve avoided all these huge unnecessary medical bills that I accumulated here. They determined my correct diagnosis there, helped me with my pain from endometriosis and saved my life. Of course, my mom was there too, who helped me with everything as I felt so lost here.
Where I am today: I have all the translations of the medical records from Russia. It's still difficult to bring myself to go to an oncological center here. But that's what I should do for my regular check-ups. Plus, the cost of healthcare here really scares me.
What I want other women to know: Try to get both PAP test and HPV test after you start your sexual life. And even try to get them at two different places to compare the results. I also think it would be good to have them every year.
How I will try to help others: I hope my story can help other women AND also doctors as I think they should be more vigilant with this disease and don't try to disregard certain symptoms. I also would like to see some changes in the American healthcare system in terms of the access to scans and tests. Especially, MRI scans as they don't have any radiation. I think there should be more private radiology clinics here where you can perform this scan if you want to pay with cash.