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After 25 years in the dark, it all makes sense now.

Hi my name is Kate. I’m 37 and was diagnosed with Deep infiltrating endometriosis a week ago. My story is a bit long because it took such a long time to get this diagnosis.

I got my first period when I was 11 years old. The pain lasted for more than 24 hours and I was climbing the walls. I was told that it is “normal”. At 17 I started taking birth control pills and the pain wasn’t that bad anymore. But I felt incredibly tired all the time and couldn’t do many sports. At 18 I joined the army and during the basic training, I got my first bladder infection. I was told that everyone gets them so it’s no big deal. I’ve been getting bladder infections frequently since then.

Fast forward 10 years

My fatigue has gotten so bad that I went to see a doctor. I was diagnosed with Mono because it fit the symptoms (increased WBC, fatigue and 37.5C constant basal temperature). A few months later, the pain in my lower abdomen started. The first one lasted 16 hours and I was sent to the emergency room with suspected appendices. No amount of painkillers helped and I was completely immobilized. The pain kept coming back every few days. Every test in the universe was performed including MRI, CT, PET scan, gastroscopy, colonoscopy, viral and bacterial blood and stool tests, hundreds of gynecological exams etc. Final diagnosis: irritable bowel syndrome, aka: “we don’t know what the hell is going on. It’s probably stress and poor nutrition.”

I was taking pain killers like dr House and would never leave home without a pack of ibuprofen on me. Two painful years later, I have fulfilled my dream of moving to Berlin to do my PhD in biology. My constant research of my symptoms and possible causes have pushed me to pursue a degree in the field. A few months after I moved to Berlin, the pain subsidised and only occurred occasionally during my period. Perhaps it was the healthier nutrition, water and a more active lifestyle. My stress levels were much lower also. I stopped taking pain killers, and except for the fatigue and painful urination during and after my period (I thought it was bladder infection), I had no complaints. I finished my PhD and found a job I liked as a scientific editor. I was 35, financially secure, and finally in a healthy relationship. I decided to stop taking the pill and try for a baby. My gynecologist found a myoma but said that it shouldn’t affect my chances to conceive. I should just relax and hurry up and get pregnant.

Easier Said Than Done.

Two years later, still no pregnancy. My gynecologist is not worried. I am, however. I go to a different gynecologist who check my hormone levels and recommends that I see a fertility specialist. One day before seeing the specialist, I go back to my first gynecologist complaining about painful urination again. He says again, it’s an infection and gives me antibiotics which only partially help. The specialist finds a polyp in the uterus and recommends a laparoscopic surgery to remove it. I decided to change to a different gynecologist because no way I was going back to the others who kept telling me to just relax. The new doctor fails to see the polyp but recommends to go ahead with the surgery. The surgeon has reassured me that they will remove anything that is there that’s not supposed to be there. After I woke up the surgeon came to talk to me. The expression on his face was such that I thought I had cancer and will die. He said that they found a deep infiltrating endometriosis that was partly in my bladder. They are powerless to do anything and I need to see a specialist. But if I want to get pregnant, I should have it removed…

I made appointments to my gynecologist (the latest one), the fertility specialist and five endometriosis specialists. The first appointment to such a specialist was last week. He examined me and halfway through, called another doctor into the room for a second opinion. He was very angry at why I came so early after my surgery, the surgeon who just dumped me in his lap, and for me not having children. I just wanted to get the hell out of there. I had so many questions about my new diagnosis but he was in a hurry to get me out the door, so I didn’t ask. To sum up: “get pregnant now and we can remove your polyp, because once we remove it, you won’t be able to have children”. So it’s the chicken and the egg story: with endo conceiving is difficult but if I have surgery, I won’t be able to conceive at all.

Thanks for reading.

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Comments

  • Endo Warrior moderator
    5 months ago

    Hi @katp12, thank you so much for sharing your story. It is shameful how long it takes for women to get an endometriosis diagnosis and I’m so sorry that it wasn’t any different for you. It’s outrageous that your doctor didn’t take the time to talk to you about the issues and what could be done.

    I’m sorry I don’t have any advice for you, but I just wanted to reach out and say I’m sorry it took so long to be diagnosed. The only thing I would say, if you decide to go ahead and try to get pregnant, is set a time limit. Sadly, the endometriosis won’t stop growing (especially if you’re off birth control pills) and, as you say, it may be difficult to conceive. But not impossible.

    I wish you all the best.

    Christina (team member)

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