to hysterectomy or not to hysterectomy... that is my question

[ReverseFerret]

Hi

I'll try and keep it short. I couple of years ago I was investigated for ovarian cancer because of raised CA125. Multiple MRIs and CT scans couldn't detect cancer but I was shown to have large fibroids.

I was put on to a waiting list for a hysterectomy, but I couldn't get a straightforward answer from the consultant surgeon as to why they thought a hysterectomy was needed. Six months ago I paid for a private consultation to get some answers. It this point I had a repeat CA125 test which came back as normal. The private consultant advised that I only need a hysterectomy if the fibroids are bothering me (they aren't).

I haven't given this much more until today, now the NHS are offering me the hysterectomy. The only reason I'm now considering it is because of what happened to Kate Middleton. She had abdominal surgery (I'm going to assume hysterectomy) and cancer was found. I am worried that there could be a risk I do have cancer, even though the scans couldn't detect anything and the only thing for peace of mind is to go ahead with the surgery now.

Does anyone have any advise or experience on this matter?
What would you do?

It depends how old you are. I would say that if you are post menopause then you don't need any of it any more so do it in case the fibroids get bigger. If not, then obviously having the hysterectomy would put you into menopause and then it is HRT, if you can take that. I've just had the operation and it wasn't bad at all and pain levels are fine but I can't do much, no lifting, fatigue levels are considerable. It depends on your circumstances and how likely it is that the fibroids would grow.

Thanks

I'm 51... not exactly sure where I am in the menopause as I have a merina coil.
but you are right... I don't need any of it anymore !

Tests don't always show cancer - I had biopsies, scans and a hysteroscopy that all came back clear, but a consultant recommended a hysterectomy "just in case". I was 55 and not reached menopause. Pathology after surgery revealed endometrial cancer - the op caught it just in time. Thanks to that consultant!

thanks

I'm thinking its probably better to go ahead with it and then at least I'll know one way or the other.

Hi, similar here. Ultrasound showed likely adenomyosis and a polyp. Hysterectomy might be one of the solutions. Currently waiting for an MRI to provide better info. Having very similar thoughts. I am 49, 2 kids so from this perspective ok. In last few years I seem to have one thing after another.

Just had an appointment with a consultant today. I am 47.

He suggested a hysterectomy on my private medical insurance due to my high CA125 also my mum had a hysterectomy (endometrial cancer) in her late 40s.
My sister had breast cancer at 47.
I have always had heavy periods but no fibroids or endometriosis.

He said I wasn't 'bad enough' to have an op on the NHS but it was possible privately.

He said the benefits of having a hysterectomy outweighed the negatives. I am trying to decide what to do

What did you decide to do @ReverseFerret ?

I've had a scan today showing a bulky uterus, thick lining multiple fibroids and a soft tissue mass that could be a polyp. I think I want a hysterectomy. I'm 51. In peri on hrt. I'm a massive worrier.

Did you look into having a hysterectomy @BrenFurlong ?
I have exactly the same diagnosis as you and also 51 this year.
2 fibroids the size of small lemons according to the women's health doc and I can really feel them now and it's getting me down. Also adenomyosis. I just seem to be constantly bleeding and exhausted 😞

I ended up having a hysterectomy last year. It went really well and no regrets

@ReverseFerret glad to hear all went well. My CA125 is still high. I need to decide quickish if I want a hysterectomy. I think I am erring on, let's do it as it helps prevent breast cancer as well

@Physiologicalmalfunction I had a hysteroscopy, polyp, lining and fibroid resection to delay having a hysterectomy. The consultant has said it's not medically urgent after an MRI and the surgery and biopsy, so I'm going to wait and see.

I had a hysterectomy 14 years ago when I was 40. I had terrible Adenomyosis and it was the best thing I ever did. I kept my ovaries but recovery was quick and I felt like a new woman after. Took it easy for 12 weeks but after that I got my life back. Procedure itself was painless and straightforward.

Do you mind if I ask if you have been through menopause and if so, how it was for you?

I had a hysterectomy at 40, keeping ovaries so am interested in your experience.

I’m now 54 and on HRT. Went on Estrogel about 4 years ago due to joint aches & fatigue but that was about all, no hot flushes or anything. This had slowly crept up on me, getting worse, and started from about age 45. Been stable on the HRT. However I recently tried coming off the estrogel just to see where I was, and the joint ache, fatigue and hot flushes hit me like a truck. Have now been back on the estrogel for 4 months and am now back to normal. I do struggle with the joint pain that has got worse during menopause, but I have hypermobility ehlers danlos (hEDS) which is a connective tissue disorder, so that causes strange issues which I think have been aggravated by hormonal fluctuations. Obviously as I had no periods since the age of 40, I’m not sure when I actually went into menopause as such.

It would take the worry away... that's why I went ahead.

It is interesting to hear that everyone has had a different set of problems and also solutions.

I must admit I'm very confused by it all. I don't really understand the physiology of how it all works.
Eg. how can the uterus be removed but the ovaries stay? Are they just loose inside there? And what is the benfit of keeping them loose in side like that? Also, if the uterus is removed and also the cervix - is the vagina just stitched up at the end? and like an empty sock inside?

These procedures all sound incredibly invasive but I know I can't carry on with these large fibroids and the constant bleeding from them and the adenomyosis. I think I'm going to be given the options at my next gynae consultation.

What on earth do all these procedure mean for your sex life? Is it over? Is there lack of sensation? I'd be scared something would be injured if I had stitches inside there. Is there any chance of injury from intercourse after hysterectomy?

Sorry about all the questions - it's all very scary.