Endometriosis UK

Got an appointment with my Consultant to discuss my fate. I had to have a CT scan as I've got a fibroid the size of a grapefruit!

Thought I would share this. I had to be admitted to Hospital over the Bank Holiday weekend for 3 days. I had severe pain and had been bleeding for 4 weeks. I have endo, fibroids etc and have had this for 3 years but over the last few months it has been getting worse. When I was in hospital I had a CT scan as the fibroid had grown to a size of a grapefuit, my uterus is enlarged and I have a cyst. My consultant wanted me to have this CT scan so they can see if this fibroid was attached to anything. I also had an infection from the cyst. I'm currently taking Norethiserone tablets 6 tablets a day which is quite a lot but it has stopped the bleeding. My appointment is next Tuesday and will let you know how I get on but I think it will be a full hysterectomy. I am really frightened of the surgery etc and what happens if the endo grows back? I will have to ask lots of questions. I must admit I've been lucky with the diagnoses of the endo as this was found out straight away. I have had two laps in the past. I feel at the end of the road now. What else is there? Anyway thanks for taking the time to read this everyone :)


3 Replies

Dear Wendymac

Sounds awful. With respect to the fibroid, a hysterectomy is not your only option, unless you want it. There are types of surgery to remove the fibroid (myomectomy) and also a procedure called uterine artery embolisation, where the blood vessels feeding the fibroid are blocked by beads fed introduced through a vein the groin area. Currently, there is no clear research evidence to indicate which approach reduces the bleeding and bulkiness feelings, nor which has better fertility outcomes. The NHS has commissioned a clinical trial, called FEMME, to compare the two options, to gather more data. If you are interested in participating, please talk to your gynaecologist about whether you are eligible. You can also find more information at femme.bham.ac.uk

I wish you well in finding a solution to your symptoms and please the community know how you get on.



Thank you for your comments :) I've had a look at the website but unfortunately it's in Birmingham which is a little too far away.

When I went to see my consultant he advised me to have a MRI scan as my uterus is stuck to my bowel. My hysterectomy is a lot more complicated. He advised against Zoladex so I don't know what to do!



Hi WendyMac

The FEMME trial is seeking women from all over the country and around 40 centres are taking part - it's just coordinated by Birmingham Clinical Trials Unit. If you want to know if your hospital is taking part, please email femme-trial@contacts.bham.ac.uk.

The MRI will give you and your consultant a better idea of what your options are, and whether there is an alternative to hysterectomy. You may want to also ask about another hormonal drug called Esmya, made by a company called Preglem. Not many NHS doctors are prescribing this yet, because it has only just been authorised as a short-course pre-treatment for fibroids before surgery. But it's worth asking!



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