Hello endo world

So I just joined the forums, thought I would introduce myself,

I was diagnosed with deep infiltrating stage 4 endo about a year ago, in a pretty life shocking emergency surgery while abroad, after a routine gynae check found some big cysts on a TV ultrasound. The biggest of which was 12 cm at that time. My uterus had been forced completely into my left side, and the cysts were pretty much shoving everything out of their way.

I'd been complaining of worsening symptoms for about a year. By the time I saw that gynae i believed that I had colitis and gastritis, causing my cramps, bloating, pain, nausea and frequent vomiting.

I was sent straight to the hospital, where no one spoke any English, we ended up in a new gynaes office, and she studied the scans, did some more ultrasounds and then flatly refused to operate. By mime she explained to us that the cysts had become so involved and tortuous, she felt there was a great risk, that I could end up with a full hysterectomy. Imagine that mime. That lady is a pro at charades.

I was started on decapeptyl. That was not fun. Not fun at all, I'm massively impressed by you guys who stay on it for a long time, I felt like an emotional sweaty wreck 😄. I was told not to travel, not to fly, any problems to get straight back there. And 2 weeks later I had a check scan.

Instead of shrinking though, my big cyst, who I like to think of as Cyril, seemingly loved the Decapeptyl, and had grown another 3 cm to 15 cm in 2 weeks.

I was rushed back in and after a load more scans and mri's I was operated on the next day. It was a pretty rough surgery. The laparoscopy turned into an emergency laparotomy, they nicked some blood vessels, and I had a lot of internal bleeding. They found endo in a lot of places, though some got lost in translation, (imagine your surgeon pointing at you l, saying endo, then waving us hands everywhere 😉) They took most of one ovary as the endo had infiltrated right through it. But, as they told me proudly afterwards, "your bits are mostly in the right places now"

Recovery took AGES. I was in the hospital for 2 full weeks, but it was months till I was back in my feet fully. My check scans showed internal bleeding for about 4 months post surgery.

Now I'm about a year post op, my symptoms are beginning to worsen again. I have to admit I'm quite scared for the future, and sometimes I feel terribly alone with the experience. Symptom spotting can be a really useful diagnostic tool with endo, but laying awake at night on your own worrying about every twinge is not 😉 for me perspective often comes with actually being able to talk about things with others who understand what I'm talking about 😆,

anyway, I'm really glad that this community exists, and you have a lot of patience for getting to the end of this post! 😆

1 Reply

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  • That sounds horrendous!!

    If you are uk based now get yourself to a specialist at an endo centre, ask your gp for a referral. Excision surgery better than laser.

    bsge.org.uk/ec-BSGE-accredi...

    If not research specialist care where you are, avoid general gynae!

    Hope you feel better and welcome to the group, everyone is very supportive. X

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