Hi again, I posted in November, in brief a complex cyst was discovered on my ovary last year, I was booked in to have both ovaries and tubes removed last November but in the final hour the operation was cancelled and I was sent home because they had ran out of time and I was last on the list that day. I only just had my consultation yesterday and my surgeon agreed to a full hysterectomy (I did request this because also my womb lining is thick and they wanted to biopsy it whilst I was being operated on and also insert a coil whilst 'in there' which I wasn't happy about)
I requested a partial hysterectomy to leave my cervix intact but my surgeon told me he'd refuse this and if I wanted that then I'd need to get a second opinion. I have no idea what to do, I fear removing my cervix as well is going to be drastic and my concern is having a normal sex life afterwards, it feels like I'll loose all my womanhood, has anyone got any advice and experience to share? My ca125 levels have been fine so far, I waiting on the results from yesterdays ca125 test. I'm in priority hence the rush in only having until today to call the hospital to let them know if I wish to proceed or not
I am 52 years old, post meno and have 3 kids so surgical menopause or fertility isn't an issue for me personally
Thanks
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Tess74
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All I can say is I decided to have everything removed when I had the operation. They thought I had a fibroid on my right ovary and my womb lining was slightly thickened although a hysteroscopy showed this wasn’t sinister.
I was 57 and post menopause at the time, but losing my ovaries has given me severe hot flushes again yay!
It turned out my fibroid was actually clear cell ovarian cancer so I was glad I’d had everything removed, and I’d opted for open surgery so easier to remove intact.
I’ve not really noticed a difference in the sex sensation side of things.
I did think great no more smear tests to worry about but have a similar procedure every 4 months now as part of my check ups, hopefully that won’t be the case for you.
if you don’t have a cancer diagnosis, why would you remove the uterus at all? It can be biopsied thru D&C during the removal of the ovary. There is no scientific rational to remove uterus with the types of OC that are confined to one ovary. There is a theoretical rationale to remove everything in high grade serous OC bc it’s biology is to disseminate very quickly (it doesn’t stay confined to ovary or fallopian tube) but there is no such rationale for other types of OC. Surgeons remove everything bc it gives them something more to do and bc they treat all OC like HGSOC although science shows different biology and behavior. You’re right that cervix removal affects sex life - bc cervix has cells that both aid sensation and vaginal lubrication, and together with the ligaments, maintains the structure and length of vagina. If you don’t have a cancer diagnosis, the last thing to do is remove organs and then suffer the consequences for the next decades of your life. I wish these surgeons were actually this open w females, instead of deeming their organs unnecessary beyond reproduction. It’s a shame. Adequately experiencing penetrative sex not only holds heterosexual relationships and marriages together but is a basic human right, in addition to preventing vaginal prolapse in the future due to lack of support.
My understanding is that removing the cervix makes little difference. I was worried and asked a doctor who explained how they remove it but leave the length of the vagina (using a toilet roll tube and satsuma to demonstrate). I've not noticed it missing except for no more smear tests.
Don't get rushed into anything. Only do what you are happy with. Seek 2nd, 3rd , 4th opinions if necessary. People have mixed outcomes of how it affects them afterwards. You can get more taken out later if needed but can't put things back. I retained womb and cervix as why would you take out something healthy. Yes monitor but let women have pmtruly personalised care, not one size fits all surgery.x
Hi Tess, I’m in a very similar situation - I’ve just been told I have a 16cm mucinous cyst which needs to be removed - possibly borderline cancerous but the MRI is showing just a 5% chance of malignancy. I’ve been advised to have a total hysterectomy with both ovaries removed, plus appendix and omentum. I’m 52 and the consultant seemed surprised when I said I didn’t want a hysterectomy unless essential and queried why my cervix needed to be taken out (the cyst and one ovary will definitely have to be removed via open surgery). I’m not sure what to do though as the standard treatment, especially when fertility preservation is not a concern, seems to be full surgery…let me know what you decide…
The problem is that the “standard treatment” is flawed. It’s based on HGSOC in patients over 70. These organs are necessary for sexual function and if one ovary is preserved, for hormonal function, which in turn decreases morbidity from all kinds of chronic diseases and preserves a woman’s life functionality. The standard treatment is justified for HGSOC in patients in their 70s but not for younger women with other types of OC. Putting fertility aside, there are other reasons for preserving organs that are equally as important for health and quality of life. Reproduction is not the only justification for preserving organs bc women have value and need to be functional beyond reproduction.
I'd definitely recommend a second opinion (and even a third and fourth if you don't feel reassured). Your consultant can refer you on (if they object, that's a massive red flag!) but if they won't your GP can send you to a different hospital. But bear in mind that means more waiting. I hope you come to a decision that works for you.
the way it was explained to me was the more I had taken out the more likely it was that cancer would not come back. That said I was also told they couldn’t confirm cancer until they opened me up so I insisted on just taking my concerning mass and the ovary where it was first. They did that and after confirming it was in fact cancer I had the full hysterectomy. I can’t say my body has been the same but I am cancer free so far. I would think they can do something to confirm if you have cancer first. Then you can have more information to decide. Best of luck
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