Unusual large fibroid - NHS surgeon for minimally invasive surgery fibroid removal?

At the end of May 2020, I was very stressed at work due to having to teach by video-conferencing (was previously teaching students in person) and managing Masters studies online at the same time. I experienced a very bad period with being extremely sick: vomiting, low blood pressure, heavy bleeding with large clots, etc. After this, I ended up with a bloated tummy including a lump in the lower abdomen and irregular vaginal bleeding.

I was referred to Gynaecology Fast Track Clinic in July 2020 after an ultrasound scan in June showed a bulky uterus with 2 masses, possibly degenerating fibroids. The irregular vaginal bleeding finally stopped after the ultrasound scan.

The MRI scans of the cervix and pelvis with contrast at the fast track clinic have revealed a few typically looking fibroids measuring a few centimetres within the fundus and anterior wall of the uterus. There is also a dominant large extruding mass (12 cm) located within the posterior wall and filling the pouch of Douglas. This mass shows no diffusion restriction, nor concerning post contrast enhancement and yet has unusual appearances (partly cystic). The MRI report’s conclusion is that the dominant mass is deemed to represent a large degenerative fibroid and suggests its removal to have the diagnosis confirmed through the lab.

I am 52 and also have had the following tests: CA 125: 16.6 ku /L (within normal range); Smear test: HPV: negative; Hysteroscopy: biopsy of the uterus has shown normal cells of the endometrium.

I was shocked to hear that the hospital treatment option offered was an abdominal hysterectomy and as a fibromyalgia sufferer I am extremely concerned about the high risk of flare up that has been highlighted by much research linking the two. It has taken me 7 years to keep the worst fibromyalgia symptoms at bay. Therefore my preference is to keep my uterus.

My understanding is that diagnosing degenerating fibroids on MRI only is not 100% accurate and at the same time only 1% of fibroids are malignant. I would also prefer not to have to deal with unnecessary hysterectomy as well as fibromyalgia flare up.

One of the main symptoms I experienced with fibromyalgia had to do with my digestive system including inflamed and bloated tummy, which explains why I didn't realise I had fibroids growing in my uterus. I started to notice pressure on the bladder a year or so ago and thought this was due to my age.

Right now I'm feeling alone, even though my husband has been supportive. I approached an experienced interventional radiologist specialist in fibroid embolisation and they recommended removing the fibroid as they thought that performing an embolisation on the large fibroid would be too risky and they'd never seen a fibroid like this before.

Has anyone experienced this and has managed to find a surgeon (preferably NHS) who was skilled enough to perform minimally invasive surgery on this?

Any help would be very much appreciated.

Thank you.

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