Operate or not?
Hello community!
I wanted to get some opinions from people that have experience with Endo!
I am 30 years old and I've always had excruciatingly painful periods with vomiting and nearly passing out, getting dizzy and needing to lay down to not collapse. I always had pains on the left side, quite far left. Early on already doctors checked but said there is no cysts so basically figure it out yourself. Then i went on the pill and at first it was better but slowly with the years symptoms slowly started resurfacing, never as intense of course. I went off the pill for about 2 years in my mid twenties and got the pains back full force. However, I was told what is weird for me is that the pain starts with the day of my period and lasts up to three days, but not a lot of heavy pain throughout the month, usually. Also, I don't have heavy bleeding, never did. I could last with 2-3 pads a day on heavy days. I was told that's not very typical for Endo. Then I got the IUD Kayleena and I had issues with it. Pain did get significantly less intense, but MUCH more frequent. I started having minor pains up to ten days before my period and 7 days after, so basically whenever. Usually taking pain meds was enough, but sometimes it stayed lingering in the back no matter what painmed i took, not intense, but still painful...still very annoying. It also increased again with time. I am not sure if it is my natural period or if it is due to my body not liking an object in there. Sometimes it is the left side pain i am used to, sometimes it's central, which i never used to have before i got the iud. Actually when I got the IUD i remember being confused about the location of the pain, as my period never actually hurt there before - so basically where the uterus is. It was always much more to the left for me.
Well in any case, with getting older and Endo gaining more recognition I went to a few different doctors specialized in this field and all of them said I am likely to have Endo, and I also have signs of it in my muscles surrounding, so this Adenomyose or whatever it's called.
However, up until now I didn't do the operation, because I was scared...of it being Endo, and also it not being Endo and me still not knowing then what's going on.
I have an appointment now for the Operation in March, and my operating doctor recommended replacing the Kayleena with the stronger version - Mirena.
I am scared though, of all of it. I don't really love the idea of getting stronger hormones and a bigger "foreign object" implanted in my uterus, but if I really have it I won't have much choice I guess.
I guess I am still not sure if I reeally wanna go through with the operation. It scares me. Things possibly going wrong - it's still surgery - all of it.
Imagine getting surgery and then finding out it's nothing...I mean apparently my doctors assume they'll find something, but I'm still worried.
I am wondering if I shouldn't try other things first, like maybe changing diet to get rid of the stomach pains and bloating I also frequently have, or i don't know. Alternativ methods.
I'd appreciate some opinions of people that have experience with this...
Hi
- I am based in Belgium and at the endometriosis dept at the hospital in Leuven, they can see with MRI scans and ultrasounds whether you have endo and to what extent. So no need for surgery there. I am curious whether there might be specialists in the US that can examine without surgery...? It turns out that I do have extensive endo and either I need quite big surgery (hysterectomy, remove right ovary + part of my colon) which would take many months of recovery and would not be without risk. The other option was to try hormone medication and pause my whole cycle completely. We will keep tracking whether it worsen with ultrasounds to make sure my bowels and urinary tract aren't getting completely obstructed.. So now I'm taking a daily pill which seems the lesser of two evils - meaning no more painful periods. I'm still fatigued and gained weight, but it feels like I have my life back. What a relief! All in all, I can say it's worth getting a clear diagnosis, knowing what's going on inside your body and how you might bring relief. You might find that like in my case other organs are affected. Hello! Oh thank you for your response! I am actually based in Germany! But I was told from several doctors the only way for a clear diagnosis is to operate. I will definitely bring itup with my main Gyno. Thank you!
Hi dear friend. First, I want to say that I hear your fear and it is absolutely valid. These are all scary possibilities - potentially having to live with endometriosis, not being sure if the pain will ever be cured, undergoing surgery, trying a new IUD and it not working...No wonder you feel stressed! I'm so sorry you're going through this. I wanted to send you a few articles that I think will give you a good place to start as you make your decision about surgery.
This article talks about different tests that can be done to figure out if your pain is caused by endometriosis or a different condition: https://endometriosis.net/diagnosis/exclusion
This article gives information about the Mirena IUD: https://endometriosis.net/clinical/iud
And this one is all about laproscopy, why they do it and what to expect: https://endometriosis.net/diagnosis/laparoscopy-surgery-biopsy.
Please know above all, that you're not alone. This community is amazingly supportive and knows exactly what you're going through. We're here for you! Sending healing thoughts. - Kat (Team Member)
