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A diagnosis after all

Surprisingly, I don’t remember my first period, which happened when I was twelve, as being painful. I only vaguely remember waking up with a blood stain on my underwear and having my mother teach me how to put on a sanitary napkin, speaking quietly as if not to let the men in the house hear we were talking about periods. Everything was quick, then I had to go to school, already tired as the day was just beginning. My following periods, though, were excruciatingly painful.

Once, at thirteen, I remember my family and I were on vacations in the countryside, when I got my period. I went out to see the cows – I have always been an animal lover !-, but I don’t remember actually seeing them. On the way, my pain got so terrible I threw up in the grass, then took a few more steps, and I suddenly could not see anything anymore, everything became pitch black, I staggered and finally, I passed out. Luckily for me, my mother was there with me. I woke up quickly. Then, I spent the rest of the day lying in bed, crying my eyes out and having trouble breathing because I was hurting a lot. I could not move at all anymore : just turning around in bed made me feel like my insides were being crushed. This kind of pain came back every month, more or less terrible depending on the month, but my period has never been pain-free enough, or light enough, that I could forget about it.

For years, like a lot of women with endometriosis, I thought my pain was normal. How could I not think that ? My mother would tell me women in my family we all have had painful periods : her own was not more painful then the pain she experienced during childbirth. Thus, I thought my pain was just something that ran in the family.

For ten years, I still went to see numerous different doctors for general abdominal pain, painful ovaries, and more. I would feel sick every day, and often tired. They diagnosed me with Irritable Bowel Syndrome (IBS) and an ovarian cyst but did not seem to care about the moderate pain I was in on a day to day basis, which was worsened during my period. They would not give me an adequate treatment or painkiller. Doctors could not find the reason I was in pain, so by their logic, why should I even be in pain ?

Fast forward until the end of last year. One night, I was sleeping when sharp pain in my lower abdomen woke me up. I was not in my period at that time, and I was most probably not ovulating. The light painkillers I had did not help and I was in too much pain to go back to sleep. I waited for the morning to come, then dressed up and went to see a doctor. She did not help me much, but this experience brought me something good. The next day, I painstakingly went back to work, and told my coworker about my pain. She recognized my symptoms : her sister and herself have had the same ones, and they were both diagnosed with endometriosis. I had thought about this disease several times, but the doctors never did.

My sweet coworker recommended me a doctor which actually knew about endometriosis, who actually listened to my symptoms (!) and who made me go perform an MRI. Vaginal ultrasounds were impossible for me because my dyspareunia was so bad, even speculums made me feel like I was being torn up – to be fair, I could not perform vaginal examinations at all, the speculum would come out no matter how much I tried to relax -, and left me limping back home, feeling like a failure for not being able to perform the exam. I still do not know if my endometriosis made my dyspareunia so bad, or if my abuse as a child and subsequent trauma did.

The MRI results confirmed I have both deep endometriosis on my left utero sacral ligaments and adenomyosis. I thought knowing what caused my pain, and what made my period so heavy would be a relief to me. And it was a bit of a relief, but only once I went over the initial shock. Yes, I was mostly shocked and scared at first. I felt alone. Contacting people close to me helped me a lot.

Just last week, I went back to see the doctor with my MRI results. She reassured me that my disease is still at an early stage and she put me on hormonal therapy (combination pill with no placebo pills), saying that it would ease my pain. I will start to take the pill once I get my period again. I have had to take the exact same pill she prescribed me in the past though, and I remember it did no help me much with my pain, so I’m still perplexed by this treatment, but I have faith in my doctor. I may be wrong and I may have to change treatments over and over again, but for the time being, I’m optimistic.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Endometriosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Endo Warrior moderator
    8 months ago

    @ikelen Thank you so much for sharing your story. I, too, suffered with horrendous pain during my periods from a young age. Despite my parents taking me to see doctors quite early on, I wasn’t diagnosed until 15 years later. Laparoscopic excision and hormonal treatment helped for a long time, but in the end I had a hysterectomy (note that I am in my 40s and have 2 children). I, too, had adenomyosis.

    I am happy that you are optimistic and I hope the hormone treatment helps you well. It’s good to at least have a diagnosis and this community is very helpful for information and support. Please do let us know if there is anything we can do to help.

    Christina (team member)

  • ikelen author
    8 months ago

    Thank you for replying to my story, Christina, and for making me feel like I’m not alone in this. It sounds like you’ve been through a lot, but I hope you are okay now. Please take care.

  • Jessie Madrigal moderator
    8 months ago

    @ikelen I so get this! I had a similar experience when talking to others about my pain. It was considered normal, especially because my aunts had also painful periods.

    I hope you can remain optimistic, I know it’s not easy, but hope moves us forward. I am on hormonal treatment at the moment, it’s currently working ok, but we will see what the future holds. Thanks for adding your voice to this community 🙂 – Jessie (team member)

  • ikelen author
    8 months ago

    Thank you for your reply Jessie. It’s sad that we women are used to painful periods and that we’re so often dismissed.

    I hope your treatment will continue to fit you ! I started my treatment just a few days ago, I will keep you all updated on my situation. Take care !

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