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Endo Is Not The End

In honor of Endo awareness month I want to re share my endo story. Here is my life.

I was 13 the first time I had a “bad cramp”. From then on they never went away and just got worse. I would double over in pain, movement in general while having a cramp just made it worse, like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol and other off the shelf pain meds but they didn’t do a dang thing. It was like I just ate a skittle to try to manage my cramps, no relief.

When I was 14, we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked and I just stayed on it for a few years. But over the years, my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain. I had to start adding some Advil in the evenings until again, nothing helped.

I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month… I wished they could understand it was real. I went to the doctor and just got more of the same, birth control, extra strength Ibuprofen, don’t know what’s wrong…

At age 31, I went to the doctor about pain in my ovary area (again) and I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify, he has been nothing but wonderful, understanding and supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of… nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue and it worked for a year. Except that I kept ending up with multiple infections and the painful intercourse never went away, it got worse and that added to my annoyance!

I asked to be referred to another doctor because this one just scratched his head saying he couldn’t figure me out and just simply didn’t think I had endometriosis. He told me that maybe because I was expecting to feel the pain that my mind was telling me that I felt the pain. He was actually suggesting that it was in my head… Wouldn’t even talk about going in to see for sure, his words were “surgery is a pretty radical idea”. He kept diagnosing me with various different infections and saying that was the cause of my pain. But that just didn’t seem right, not for the amount of pain I was having. I was very doubtful after ending up in the doctors office twice a month on a regular basis…

Asking for a referral was the best thing ever. This new doctor asked me a bunch of questions I’d never been asked in relation to my pain. Did I have migraines? For how long? When did the cramps start? Did I always have a heavy period? He asked about my ovary issues, the painful intercourse. He did an examination, which was always very painful, and this concerned him more than I had seen any other doctor be concerned. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparoscopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds. To say that being told I was being scheduled for surgery made my day is pretty sad, but it meant answers.

When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of severe stage 4 endometriosis” he’d ever seen.
He had started removing some endo tissue but due to the extensive damage and issues with my organs, he stopped the surgery and went over everything with me to give me my options.

My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed along with the eight tube, my left ovary and tube were so covered they couldn’t even be seen through the endometrial tissue. My uterus was fused to my rectum and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag.
It was bad, but I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.

But first, I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis and makes it grow, so he needed to stop the growth before he could attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy.

He said that after seeing my insides, he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.

Those ultrasounds the previous doctor did, where my left ovary was 3 times its size, was because the endo tissue was choking the tube and I was unable to ovulate. The mystery of him not being able to see my right ovary on that same ultrasound was because it was already dead tissue thanks to the endo silently destroying my body. It all made so much sense after finding the right doctor, I was actually feeling what was happening inside of me and I wasn’t crazy.

Those times where I would stand up too fast and it felt like a rubber band was being stretched to the point of snapping and I’d have to sit back down were because the sticky endo tissue was actually stretching where it was fusing my organs. I analyzed every symptom I ever had and I understood every single one after this doctor told me what my insides looked like.

It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.
TRUST YOUR BODY, it’s not in your head. Sometimes you have to MAKE the doctors hear you if you’re not lucky enough to find the right one. Don’t hesitate to be referred, it was the best thing I’ve ever done. If only this would have been treated when I was younger and first started complaining, my life would have been different. Not only pain free but I would have had options that were taken from me. Endometriosis is not just a physical disease, it’s mental and emotional and requires full attention in all of those areas.

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

    Oh my goodness, @redheadgirl84, you have had a horrible time of it! That is just so devastating to hear, and yet so common. We women always get told that our cramps are “normal”, even though we know they aren’t, or that the pain is all in our head. I am so happy that you prevailed and finally got a diagnosis, even if the endometriosis had already spread damagingly by then.

    You are right that endometriosis is not only a physical disease. You might find this article helpful on the link between endometriosis and mental health: https://endometriosis.net/living/mental-health/.

    There are also some articles on special diets for endometriosis, as some foods can inflame the endo, leading to a flare up. They may be of interest.

    https://endometriosis.net/living/diet-considerations/
    https://endometriosis.net/living/kitchen-essentials/

    Thank you so much for sharing your incredibly difficult journey with endometriosis. I hope you can find a way forward, and some relief for the pain. Good that you now know the pain is real and wasn’t just in your head, but it shouldn’t have taken close to 20 years for doctors to figure it out.

    Christina (team member)

  • Jessie Madrigal moderator
    8 months ago

    @redheadgirl84 I feel you! As patients, we all have long and complicated endometriosis stories, from misdiagnoses, to long drawn-out processes – even battles! – to get referred to the right doctor. It sounds like you have been through so much, and that you’ve been in a lot of pain for so long. I am so sorry!

    Just like you, I wish I had been diagnosed sooner. Thank you so much for sharing your story with this community. – Jessie (team member)

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