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I wanted to share my experience, just in case it could help someone else.
I've had a 5 year history of extreme fatigue, abdominal pain, bloating and back pain. It's built gradually to the point I was no longer functioning. I've been unable to work for 17 months now and lost my job.
I was found to have fibroids back in Dec 2015 but was told they were asymptomatic because they were outside my uterus. I have no proof related issues. A Dr queried endometriosis and so I had a diagnostic lap in April 2016. Nothing was found, just the fibroids, one of which was now larger and filled my pouch of douglas. Again, I was told they were asymptomatic and I was discharged from gynae with the no medical cause for my problems.
6 months after the lap, my back pain worsened and I was referred to orthopaedics. It was a 9 month wait so wasn't until April 2018 when I had an mri. After the mri, I was told I had severe endo and was referred to gynae. The endo team requested another mri and ct scan and I was told I had a cyst too. They didn't tell me this but they also found a large mass. They didn't know what the mass was and were querying cancer or endo. Everything got a bit stuck at this point with no one really taking on my case so I ended up requesting my medical notes,saw all the queries of cancerand wrote a letter of complaint and was picked up by the endo service. The endo specialist felt surgery was the best option but that they couldn't really tell what was going on so surgery had a lot of questions and a lot of possible outcomes. I was told that to remove the cyst and mass, I'd likely need a full hysterectomy. I was put on decapeptyl in the months running up to the surgery to try shrink it and reduce risk (which has been awful).
I am now 9 days post op. I had 2 surgeons- one an endo specialist and another a very experienced gynae who specialises in more complex laparoscopic surgeries.
Nothing prepared me for what I was told when I woke up- the mass everyone was so puzzled by was a parasitic fibroid. Apparently, 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 was 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 . 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, I'm still struggling badly with anemia that's developed since surgery. I think recover will be slow.
I have been dismissed so many times by GPS and consultants. Many times I was discouraged and give up on getting help medically and would try to feel better through diet or holistic methods but after the mri, I could see it wasn't right and got my medical notes and decided to fight. I'm so glad I did. I hope my story gives people hope and the encouragement to fight- keep asking questions, complaining, learning, demanding. Just don't give up.
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