can you refuse hysterectomy and just have large cyst removed instead???

[Cocolil20]

Hi All, just wondering if anyone has had any experience with turning down a hysterectomy and just getting a large cyst removed instead on the nhs? There is pressure on me to have a hysterectomy but I don’t want this and instead just want the large cyst I have removing and to then manage my symptoms with nutrition, exercise, reducing stress and vitamin supplementation ie natural ways . I don’t feel comfortable with any of the non surgical treatment options I’ve been offered in the meantime as it sounds like they are very much trial and error and replace one problem with another so Im keen to stick with what Im doing even though it’s not great. Im just worried that I can’t ignore a large cyst though so I will need surgery of some sort but worried if I say no to hysterectomy they won’t perform any surgery on me …. Thank you

[Fizzypoptastic]

Hi there,

I was offered a hysterectomy at the age of 41 as one of my initial treatments after being diagnosed with endo & adeno back in 2021. I also had 2 cysts measuring 4cm & 2cm.

I declined the hysterectomy & opted for a hysteroscopy & then a laparoscopy to remove the cysts; one of which had grown to 10cm.

In short, yes you can opt to have just the cyst removed.

(I was accidentally put down for a hysterecomy, ‘clerical error’ they said. The surgeon realised a week before my op!)

Good luck with your op! xx

[Cocolil20 in reply to Fizzypoptastic]

Hi, thank you so much for your reply. It’s good to know you had some surgical options and I hope all is going well for you now . So Scary they had you listed incorrectly for hysterectomy though!!! I think I’m going to try and see the consultant again (easier said than done on the nhs 🤦‍♀️) to talk through my options as it seemed to me it was only hysterectomy and hormones to stop the periods in the meantime. Maybe my endo is that bad doing the cyst alone isn’t an option. My consultation was so rushed and the whole hysterectomy chat for me was completely out of the blue so was a lot to take in. Thanks again for sharing, I really appreciate it. Take care x

[Lindle]

You can refuse any surgery but with severe endo it can be recommended along excision of any endo that has grown back or reoccurred. In complex cases the uterus will often be bound up with the fibrosis and it can be safer to remove it along with the disease rather than trying to dissect the endo away. Also assuming the cysts you have and had previously are endometriomas it isn't advised to go into menopause with them as they can be related to malignancy, so ovary removal can be a consideration to avoid this.

With a history of severe endo I assume you are in an endo centre and they will be advising this for what they feel is your best interest, but ultimately it is all down to your choice. I assume you have had an expert scan to see how severe any endo is that you now have.

[Cocolil20 in reply to Lindle]

Hi there, thank you so much for your reply, it’s very helpful to know all of the information you mention as I wasn’t aware of this. I do have severe endometriosis and had bilateral endometrioma x 2 removed in 2017 along with severe endo in pelvis excised and a blocked left tube fixed all at same time so I was surprised to find out I have another large cyst just 5 years later. I am under a specialist centre but to be honest the whole experience has been pretty shocking. I have had an MRI and internal/external ultrasound but the consultant didn’t discuss what it shows just simply that I need an hysterectomy and that was about it really. I was so shocked I forgot to ask all of my questions and he was rushing me as his clinic was running 2 hours late. Very bad experience indeed unfortunately. I think I may need to seriously consider the hysterectomy unfortunately but really don’t want it… thank you so much again for your excellent advice. Take care x

[Jade2006]

Yes you can it’s your body and your choice.

I don’t always trust what they say .

X

[Cocolil20 in reply to Jade2006]

hello there , thanks for replying to my post, it’s much appreciated. I completely agree and think it’s really important to push back and not just trust instantly what’s being said, so I will definitely need to try and see the consultant again or get a 2nd opinion perhaps. Take care and thanks again x

[JulesUK]

so many doctors think a hysterectomy will solve the problem (or imo make you go away). It’s your body, your choice. Gone are the days when we take what a doctor’s said as gospel. So many of us here have been fobbed off, mistreated and been given incorrect information. You’re the best avocation of what is best for you.

[Cocolil20 in reply to JulesUK]

Thank you so much for your message, I really needed to hear this advice ❤️ it’s sad to know so many are not getting the proper care and treatment they deserve. I will definitely try to exhaust all my options as I really don’t want a hysterectomy!!! Take care x

[Thena90]

All patients are allowed to agree on or reject any treatment, it's your body, the final decision is yours. I'm not having surgery, I'm trying with hormones and MANY complementary/natural treatments.

[Cocolil20 in reply to Thena90]

hello there, thank you so much for your message. I will try to explore the hormone treatment options in more depth and I definitely need to try more natural treatments too so will look into this. Take care x