Rare Parasitic Fibroid

Posted , 6 users are following.

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 cancer and 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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4 Replies

  • Posted

    Dear Betty what a journey..am so sorry for your experience. I cannot begin to imagine how frustrating your health journey has been. My prayers will be with you for complete healing.

    Thanks for sharing your story.

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  • Posted

    Hi Betty,

    Am really sorry to hear about your story regarding fibroids, but am happy to know that you are on the road to recovery.

    Am also happy that you share your story of what you have been through, because reading your story this morning really gives me hope as am also going through similar issue about fibroids l was told l have it since last year, like you said, l have been feeling really unwell as if something is eating you alive in side you with no energy at all serious fatigue problem with pain almost all over my body and some Wear feeling, but I have a very good Gp, who has been sending me to have so many other test done because he's so confused why am having all the symptoms that no can explain. Well to cut the matter short, am having my op, done in less than three weeks time I pray and hope it will give me my life back and finally go back to work. Will let you know how everything went. . thanks again for sharing your story, because everyone and include me have been saying that what is wrong with me is not fibroids

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    • Posted

      I'm so sorry to hear you've been having similar issues. It's truly awful to feel so ill but having no explanation or people offering any help just makes it even harder.

      I really hope your surgery brings you answers and relief. Good luck. X

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