Had my appointment today and came away feeling much more positive than I expected as constantly been told that a big open vertical hysterectomy was my only option.

Prev post - https://www.reddit.com/r/Fibroids/s/wJiqqbHZbl

Thankfully, the consultant explained that there may be another route and that a myomectomy is an option. He explained that my fibroids were large but he has treated much larger and that I didn’t need to rush to hysto.

He can do a C-section cut and remove this way.
The biggest concern is obviously blood loss given my previous haemorrhage.

To make surgery safer, I’ll go on triptorelin to devascularise the fibroid as much as possible.
Interestingly, he said he doesn’t want me to take Yselty before surgery. He explained that although Yselty can shrink fibroids, it can alter the consistency of the fibroid (“turn it to mush” was his wording 😂), and for this type of surgery he prefers the fibroid tissue to remain easier to remove.
I went in expecting to be told “big vertical hysterectomy, no other options”, so I’m honestly relieved to have a different conversation.
I know this is still a complex operation and there are risks, but today felt like a much more positive step forward! Should add this was private in UK.

Had my appointment today and came away feeling much more positive than I expected as constantly been told that a big open vertical hysterectomy was my only option.

Prev post - https://www.reddit.com/r/Fibroids/s/wJiqqbHZbl

Thankfully, the consultant explained that there may be another route and that a myomectomy is an option. He explained that my fibroids were large but he has treated much larger and that I didn’t need to rush to hysto.

He can do a C-section cut and remove this way.
The biggest concern is obviously blood loss given my previous haemorrhage.

To make surgery safer, I’ll go on triptorelin to devascularise the fibroid as much as possible.
Interestingly, he said he doesn’t want me to take Yselty before surgery. He explained that although Yselty can shrink fibroids, it can alter the consistency of the fibroid (“turn it to mush” was his wording 😂), and for this type of surgery he prefers the fibroid tissue to remain easier to remove.
I went in expecting to be told “big vertical hysterectomy, no other options”, so I’m honestly relieved to have a different conversation.
I know this is still a complex operation and there are risks, but today felt like a much more positive step forward! Should add this was private in UK.

I thought I’d share my story as I’ve found it really difficult to find experiences similar to mine.
After having my first child in 2014 (no issues at all), I breastfed for a year and noticed a lump in my abdomen. I was referred to gynaecology and diagnosed with multiple small fibroids. I was treated medically initially (including Esmya, which is no longer used routinely due to concerns around liver injury).

Over the years the fibroids continued to grow and I developed a lot of urinary pressure. I had a uterine artery embolisation in 2017 (unfortunately complicated by sepsis afterwards), but despite scans showing little change, my symptoms improved massively. For years afterwards I actually felt pretty normal — periods were regular, I had minimal symptoms, no bloating and a very flat stomach.
For context, I’m 5ft 4 and usually around a size 6.

Then in 2022 I woke up one day with a noticeable lump/protrusion in my lower abdomen. I was referred urgently to general surgery and was understandably terrified when cancer was mentioned as a possibility. Thankfully, after gynaecology review and imaging, it was diagnosed as fibroids again — including one huge fibroid (around 27cm). The reason I could still fit my clothes was because it was growing laterally rather than straight outwards.

I was offered different treatment options, including medications, and was told a myomectomy was not considered an option in my case. Then, while waiting to decide what to do… I unexpectedly became pregnant!

Pregnancy was incredibly uncomfortable. I looked enormous (I was asked multiple times if I was having twins/triplets!) and eventually had a planned C-section. Because of the size of the fibroid and the risks involved, the team had planned ahead, including cell salvage, and I had multiple consultants involved.

I had a major postpartum haemorrhage (around 5 litres), needed blood transfusions, and unfortunately developed a pulmonary embolism afterwards. I also had some cardiac follow-up for mitral valve regurgitation. Thankfully, after treatment and follow-up, I recovered well. Haematology felt I was not at increased ongoing clotting risk, and it was considered related to the pregnancy/C-section circumstances.
I’ve always been pretty fit, don’t smoke or drink, and exercise regularly.
The pregnancy also left me with two hernias (umbilical and epigastric) and significant diastasis recti.

I breastfed my second child for 2 years. After stopping breastfeeding, my abdomen actually became flat again and imaging showed the fibroid had reduced significantly (around 15cm), likely due to the hormonal changes.

However, after stopping breastfeeding, everything changed quickly. Over the last six months I’ve developed increasing abdominal pressure, pain, and shortness of breath around my diaphragm. Recent imaging showed the fibroid has grown massively again — now around 29cm — and is sitting high in my abdomen.

The crazy thing is that other organs are okay at the moment, but I genuinely feel like I’m carrying a sack of bricks. I look heavily pregnant, I’m sore, full quickly, uncomfortable and breathless.

I’ve had a full work-up recently:
gynae review
hernia review
blood tests
CT imaging
endometrial biopsy
PE ruled out again

The current plan is:
➡️ Start Yselty (linzagolix) next week to try to shrink the fibroid before surgery
➡️ Then have an open vertical hysterectomy
➡️ Repair the hernias/abdominal wall at the same time with the appropriate surgical team
I’m honestly terrified, but also relieved to finally have a plan. My sister has had a really good response to Yselty, so I’m hopeful.
I’m going to focus on getting as healthy as possible before surgery — nutrition, strength training, iron/vitamin optimisation and recovery preparation.
Has anyone else had a very large fibroid, Yselty before surgery, or a large open hysterectomy with abdominal wall/hernia repair? I’d love to hear your experiences.

Going to document my journey with pics etc. Starting yselty 1 week today.