I've not posted for a while. Partly because I was really struggling with the side effects of decapeptyl and partly because I just didn't have that much to report. But that's all changed now that I am 5 days post op.
My surgery was with a BSGE endo centre and I had 2 surgeons- one an endo specialist and another a very experienced gynae who specialises in more complex laparoscopic surgeries. I was told before it that they couldn't give me an idea of outcome and that it would all depend on what they found when they got inside. I was petrified.
Nothing prepared me for what I was told when I woke up- the mass everyone was so puzzled by was a parasitic fibroid. An extremely rare type of fibroid that grows out from the uterus and then grows connections to nearby body parts to absorb blood and nutrients. There are hardly any cases of these but it's usually the result of previous surgery to remove fibroids, which have left a few cells in the pelvis which have become attached to organs and grown- which isn't the case with me. My parasite had become tethered to all of my organs. It wqas literally sucking the life out of me. They managed to successfully cut it away from my body- apparently it came away fairly easily. The put the fibroid in a bag and masticated it so it could be removed laproscopically without leaving any cells behind to cause further fibroids to grow.
The cyst they thought was an endometrioma was not growing from any of my organs as they though but from the fibroid itself- so this was completely removed too.
They searched my entire pelvis thoroughly and NO ENDOMETRIOSIS WAS FOUND. None. The endo specialist suspects the fibroid may have endo inside it which would account for the cyst- I'll find out once the pathology report has been done. But they believe I will make a full recovery!
It feels a bit like a miracle.
My post op experience has not been easy- I've been really unwell and had a few complications but I got home last night and I'm starting to feel like I'm on the road to recovery.
I don't feel my words can do justice to how grateful I feel for this outcome and the help that I have received that's got me here. This forum was the first place I started to get some answers, as well as some much needed support and it led me to another forum, where I learned so much and was put in touch with someone who helped put together my medical notes to a letter of complaint, which is what led to this surgery. If anyone has been part of this journey with me- in any way- thank you so much. I really don't know where I'd be if this hadn't happened.
I hope my story gives people hope and the encouragement to fight- keep asking questions, complaining, learning, demanding. Just don't give up.
x
Laparoscopy or open surgery?
New to endo and alone post lap surgery.... 😓
Surgery done, day 1
Can't get a surgeon to take the risk of treating me!!
