I have today to decided on a full hysterectomy or not

[Tess74]

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

[SuffolkJen]

HiTess74

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.

Good luck in whatever you decide xx Jen

[Tess74 in reply to SuffolkJen]

Thanks Jen, I think I'm just feeling a bit overwhelmed lol

[Doggies221]

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.

[Morini]

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.

[Notage]

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

[SazzaLou]

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…

[Doggies221 in reply to SazzaLou]

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.

[Emcee71 in reply to SazzaLou]

Gosh I'm not surprised that this outdated attitude exists but sorry to hear you're on the receiving end of it. Things really do have to change. Well done for questioning the status quo.

[SopSinger]

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.

[Emcee71 in reply to SopSinger]

PS not sure when you say post meno how long it is you are post meno. I was 52 at diagnosis and barely had periods (so not post meno but heading for it) and the hormonal shock has still been enormous. I wasn't warned about what would happen. But it sounds like you'll be able to take HRT in which case a lot of what I've said could be disregarded. I do worry about prolapse having no cervix though however not sure how much having one reduces the risk. Might be worth an ask. Sorry you're feeling rushed. Sending a hug

Emily

Now 53

Clear Cell OC Stage 2B

Endometrial Cancer Stage 1

[SopSinger in reply to Emcee71]

not sure why you addressed this to me?

[Emcee71 in reply to SopSinger]

Yes thank you, it was a mistake, I find it easy to hit reply to the wrong comment -apologies. The OP has seen my response so all good!

[Marieck]

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

[JOY202452]

Dear Tess74.

Each person feels differently, but for me and my family it was just a case of anything to lessen any chance of cancer coming back. I have noticed no difference to anything. A bit more emotional maybe when apprehensive re hospitals.

[Emcee71]

I don't feel aware of not having a cervix daily if that makes sense. I'm more upset about my middle weight gain and the exhaustion. I had to have my womb removed as I also had a separate endometrial cancer (it was pre/borderline at time of biopsy and had turned into cancer by the op). However, if you can keep even an ovary you could consider that. If you can keep the womb I'd also do that. You could ask for a womb biopsy before the op. It's your right. They're not fun but worth it? Total removal of all oestrogen if not strictly necessary should be avoided IMO. I say this as I'm really suffering. hope this comment has helped. x

[Emcee71]

PS sorry I posted this as a reply to @sopsinger so in case you didn't see it, adding to my other reply. I'm not sure when you say post meno how long it is you are post meno. I was 52 at diagnosis and barely had periods (so not post meno but heading for it) and the hormonal shock has still been enormous. I wasn't warned about what would happen. But it sounds like you'll be able to take HRT in which case a lot of what I've said could be disregarded. I do worry about prolapse having no cervix though however not sure how much having one reduces the risk. Might be worth an ask. Sorry you're feeling rushed. Sending a hug

Emily

Now 53

Clear Cell OC Stage 2B

Endometrial Cancer Stage 1a

[SazzaLou in reply to Emcee71]

I’m not sure if I’m post menopause tbh as my periods stopped when I got the Mirena coil a few years ago. I got a second opinion this week - from a female consultant - who advised just getting the cyst and both ovaries removed (given the size and its location) unless of course it’s malignant. Now waiting for the results of the MDT at the first hospital - then I will decide where to go! But does anyone have experience of keyhole surgery for a large (15/16cm), potentially borderline, cyst? I’ve been told by both consultants that it’s not an option…

[Emcee71 in reply to SazzaLou]

All I know is that my ovary containing a cyst (actually a tumour) was removed via the smaller incision. (then the rest was done via open surgery). The consultant said he'd do it that way because the less time you're 'open' the quicker you recover. To this day I still don't understand how removing a cyst of that size was possible via a small incision. But it was! x

[SazzaLou in reply to Emcee71]

Thank you - how big was your cyst? And who was your consultant? I might want to contact them!!!

[Emcee71 in reply to SazzaLou]

Sorry just saw this. It was 15x12x10cm. I'm in the UK under Maidstone and TW Trust, Andreas Papadopoulos x

[Doggies221 in reply to SazzaLou]

Why both ovaries removal when cyst is only on one? Good luck!

[Tiny_dancer]

Hi Tess, I am so sorry you have this dilemma! I would definitely ask for a second opinion if you are in any doubt. The fact you don’t want to have organs removed unnecessarily should be taken into consideration. Totally different decision if you know you have cancer. For what it’s worth when I eventually had everything removed I didn’t find any real difference except a bit of dryness but that is easily remedied and it did improve. x