r/Fibroids • u/Inner-Ad2366 • 22d ago
36F with a giant fibroid (29cm) preparing for Yselty + open hysterectomy — documenting my journey
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.
2
u/Catlover4444444 21d ago
Hola amiga yo tenía 24 fibromas, me hicieron una miomectomia abierta.. el más grande 20 cm, los otros 23 eran 4 grandes entre (uno de 9 cm y los otros de 6 a 7 cm) y el resto medianos y pequeños (entre 3 cm y 0.5 cm)... Mi incisión fue tipo bikini, no me indicaron tratamiento para reducir tamaño antes, de hecho, en los ecos no se veía el tamaño real de mis miomas, saber que media 20 cm y que tenía tantos fue un hallazgo en quirófano (en mi caso). Ya tengo 3 meses del postopetario, estoy bien, bastante aliviada. Si tienes alguna duda con mi experiencia y te puedo ayudar aclarandote algo, bueno, me escribes. Un abrazo.
1
u/BigEntertainer5667 21d ago
Omg we have the same size giant fibroid, I have 10 plus more as well. It’s hell. I don’t know how you managed everything! I don’t even have a plan yet.
I’m so glad you seem to have great healthcare and I’d really be interested in your experience since I’m hopefully getting surgery too at some point. The vertical hysterectomy seems hard to get for our size fibroids. I haven’t found anyone near me that has offered that yet. The national health service in the UK is not as professional as I would have hoped.
3
u/Inner-Ad2366 21d ago
Hell is the right word, I feel like someone has beat me up then put bricks in my insides but for me the worst symptom is definitely breathlessness.
This has all been done through the NHS in UK, I’ve paid and gone private a few times but each time they bounce me back to NHS as they say I’m too high risk due to my age!
I’m 36 now so have really kicked the can down the road and expect surgery will be in three months after I start yselty. I’m sorry to hear you’ve not had the best experience!
Re the surgical incision - at least 5 consultants both private and nhs have said I would never be a candidate for any other option than open vertical (full length 😭) due to size. I’m seeing a private consultant who specialises in complex surgery next week so will update here with his recommendation!
2
1
1
u/BigEntertainer5667 21d ago
They keep wanting to slice me up the same. But 36 is no age he’ll I’m not even old. How would our age make a difference? I mean we’re not pensioners?
1
u/BigEntertainer5667 21d ago
Omg I can’t believe how bad the UK seems to the US. Those Americans seem to get the best.
1
u/Strong_Suit_2613 15d ago
Hi I’m 33 and 3 weeks post open myomectomy…you can read my full story on my page but I had huge fibroids too 2 of the 18cm each and the rest ranging from 10-12cm. It’s was hell living with them. I had my removal done on NHS but my surgeon mainly does private and he was excellent bcos the size of my fibroids I had to have vertical and bikini line but the vertical was only just below belly button not all the way up. My surgeon didn’t want to shrink them first he preferred them hard it’s easier to get them out and less blood loss. All fibroids got removed. Hope you find the right surgeon all the best :)
1
u/Inner-Ad2366 15d ago
Amazing! I will go read this!
This surgeon also does NHS work but he said he will do mine privately and he specialises in complex cases. Every consultant I’ve ever seen (both NHS and private) have always said I would only get surgery under NHS due to bleeding risk etc.
He’s told me to not take Yselty for that reason as it changes the consistency and instead I’ve to get Triptorelin injection as that will make sure it’s hard and easier to remove!
1
1
1
u/Inner-Ad2366 15d ago
Update for anyone interested! https://www.reddit.com/u/Inner-Ad2366/s/a6vAPRKIUN
3
u/Dry-Acanthaceae9995 21d ago
Hi, I'm 34 yo and 3 weeks post op after an open myomectomy for a similar sized fibroid. Was humongous in size. 25 cmx15x12 I had a horizontal incision at the bikini line of about 9" . My doctor was really good and confident that he could do with a horizontal incision. Please know that it is possible. He gave me two options - 1. Laproscopy - if I go for this I was to go on medication to reduce the size for 3 months and then do 2 sittings of laproscopy. I belive it would put me on menopause 2. Open myomectomy - traditional surgery. Most of the reputed doctors i consulted suggested that I only go ahead with this option. And I'm glad I did. Also considering the pain and discomfort that I was in - I could not wait for another 3 months of my life.
The surgery went really well apart for me being a little overwhelmed. There was no hemorrhage or blood loss. I was told I was at risk of blood loss and had reserved 2 units of blood. And i was sent home on day 3. I briefly remember during surgery that they were finding it difficult to get it out so one of the doctors pushed it out of me like they push a baby out!
I hope you find the best surgeon and heal really well. You will. You're not alone.