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Lifelong Illness, Recent Diagnosis

I’ve tried to write up my Endo journey a few times, and I end up writing so much that I don’t think anyone would want to read it. I’m sure everyone has a story that could be that long if they wrote it all down, but I’m going to try to write a condensed version:

I had to leave public school

I have had terrible, heavy, irregular, miserable periods from the time they started when I was 11. I missed a lot of school, activities, and plans. I ended up having to leave public school for an online school, and of course, that wasn’t a great move for the health of my social life.

I didn’t start suspecting Endo or seeking treatment until I was 28, but I didn’t receive a diagnosis until this year at 32.

I think I got pretty lucky avoiding most of the circumstances that make other women seek treatment sooner. There’s no pressure for penetrative sex from my wife, which I hear is often painful, and I never had any desire to carry a child, so I was not worried about fertility. It was easier for me to put off treatment than I think it is for a lot of women.

It took four doctors to find the right one

I saw 4 different gynos because of my symptoms. The first one was incredibly dismissive; the second one immediately suspected Endo but would not do surgery “just because;” the third was at a hospital system that I had to leave for insurance reasons before she could do anything; and the fourth, finally, is the doctor who diagnosed me.
An extra note about Dr. #2: She refused to do surgery because I wasn’t having bad enough symptoms to warrant it (in her opinion), but she also told me that “as soon as my wife had our baby, my problems and pain wouldn’t matter to me anymore anyway.” (Spoiler alert: having a baby to take care of did not make my symptoms magically disappear.)

Dr. #4 is the best. She believed me right off the bat, and made me feel like my pain and my concerns were valid. Even though she didn’t detect Endo during a pelvic exam or ultrasound, she agreed with me that we should do a laparoscopy to rule it out, and to do an excision if there happened to be any Endo. She had every intention of helping me with referrals to other doctors as needed until we found the real culprit, after the Lap.

Surprise! In my doctor’s own words, “As soon as I got my camera in there, I told my team, ope! Stage 4!”

She did the excision while she was in there. It was a 4 hour surgery. Obliterated anterior cul-de-sac, both ovaries engulfed, uterus, bladder, rectum, and pelvic walls all needing excised.

The symptom I'm experiencing more now

The surgery was Sept 20, and at this point I am feeling probably 75% healed. I have to be a little bit careful about how much I do all at once, and I have to sit with my heating pad more often than I’m used to.

The remaining symptom that is still giving me problems is embarrassing, but I have read enough stories on here to know that I don’t have to be embarrassed to tell you.

I am having bowel/rectum pain almost constantly. Sometimes it’s just an ache, but when I have a BM, it’s always followed by 30-45 minutes of more intense pain. This is usually when I use the heating pad, which helps a little.

Now my gyno is considering sending me for a colonoscopy to look for Endo inside of my digestive tract. She says that she didn’t see any specific evidence that the Endo had perforated any organs, but also that it was advanced enough that it is entirely possible.

I don’t want to have another surgery, and I certainly don’t want to have bowel surgery. I know that fear is skipping a few steps from where I am right now, but it’s all I can think about. And of course, if the colonoscopy shows something that needs to be removed, I will go forward with the surgery anyway.

Has anyone else had a similar experience with bowel problems? How did it work out for you?

Thanks!

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