Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[groundhog]

Hi ladies - i know Tiger has started a similar thread but didn't want to hijack it and mine is slightly different.  I may have explained before I need my rectum removed ( chrons disease - already have a bag - remaining rectum is a cancer risk ).  I've also got cysts on my ovaries and a history of severe endometriosis / adhesions.  I'm not sure about the op as it would involve a complete hysterectomy plus rectum removal - in fact I have thought about it and agonised over it for years.  Big op for theoretical cancer risk ( I do have symptoms that I deal with daily but I'm used to it).  As I'm getting older tho I am worryng more - I know a few people who have had bowel cancer and now I know the risk is there - I feel I should do something.  But when I have hysterectomy they will take both ovaries.  I've not had a period for 3 years so am well into the meno but wonder how will I cope without ovaries as I don't think they will give me HRT because of the endo.  Surely your ovaries continue producing some hormones until we die and how do we cope without them.  I have visions of become a wrinkled old woman without any ovaries and no HRT. Plus I really struggle with depression as it is - I'm thinking how will I cope plus of course having rectum removed will cause issues too.   Has anyone any experience of this please , especially the ovary removal bit.

Thanks ladies xxx

[Joyce]

I got ovaries removed 10 years after hysterectomy, been on HRT for a long time now. That's going to be quite an operation groundhog.

[groundhog]

Yes I know Cubagirl but it's so hard if not impossible to know what to do.  Don't have the op and live with the increased risk of cancer - plus have to endure annual tests and all the problems the diseased rectum causes.  Or have the op and at worse - die!!! Or at best - be ok with the cancer risk removed.
I just do not know what to do. 

[Linsey44]

Hi Groundhog, I hady sub total hysyerectomy (just womb) in May 13 and ovaries and tubes in April 14.  Both those ops were enough to cope with individually with the added complication of rectum removal.  You are very brave, none of these are easy decisions to make and I wish you luck.

I am 44 and on hrt (tibolone) hasnt stopped all hot flushes as I can get up to 20 a day but its bearable as they are a feeling of heat rather than sweat dripping off me and I have no other meno symptoms.

Are there any particular questions about ovary removal that you would like to ask, if so feel free.

As far as not being offered hrt I think you should ask your consultant, mine put me on tibolone as I had a history of adenomyosis and that is why they recommend a continous combined hrt in those circumstances.

If you want hrt then ask for it.  Let us know how you get on
linsey X

[Linsey44]

Groundhog I meant without the added complication - in my previous post. Sorry to confuse you

[groundhog]

No I knew what you meant Linsey 44 x
If they removed rectum they would do hysterectomy and ovary removal same time to avoid the need to open me up again as I have had a lot of surgery. 
I suppose what I'm thinking about having the ovaries out is - I am post meno now and not on HRT- I'm coping ok ish.  So do the meno symptoms get worse when you have your ovaries out even though you were post meno having the op.  I know that if you haven't had meno and then have ovaries out you are plunged straight into surgical meno which must be a nightmare.  But of course in my case my last period was 3 years ago so what's likely to happen?   

[Linsey44]

I had been experiencing peri meno symptoms for a few years without realising it.  Was told approx 2012 that I was peri meno.

Wasnt until i came to this forum in April and seen the symtoms that many women have that i twigged I must have been going thru peri meno since around age 38 without realising it.

I wouldnt have thought that ovary removal for you would result in severe symtoms since you are post meno already.  How do you cope at moment? Am 8 right in thinking that you have a lot of family leaning on you for support as well?

Personally i started to need hrt around 2 weeks post op but at least my body had a chance to recover from surgery before that kicked in.  Maybe that had more to do with being 44.  I felt lucky that i had a chance to recover slightly as I was aware some women experience symptoms straight away.

This is also an opportunity to remove the ovarian cancer risk as well.  Maybe even reduce breast cancer risk by having ovaries removed.

Its not a decision i regret taking.
Linsey x

[groundhog]

I cope ok ATM without HRT Lynsey - I do have some vaginal problems and am on vagifem .  I cannot decide what to do and sometimes I think it's such a big op - leave well alone.  But other days I'm not so sure especially as I'm not feeling great ATM and have nibbles and pains.  Probably nothing to do with ovaries or bum but I get worried.  I do have family commitments too which doesn't help - my mother is brain damaged following a brain haemorrhage.  My much younger sister has 2 young chikdren who I help look after - so yes it would put added pressure on everyone.
My previous surgeons told me not to have surgery unless I had no choice as I have adhesions etc so this is lodged in my mind.  It's so difficult and for some reason this week it has taken over my brain!
Night all - thanks for your thoughts xxx

[peegeetip]

Hi groundhog

so sorry to hear about your troubles.

Was not sure what you meant on why they wouldnt give you HRT btw.

However in terms of a complete Hysterectomy - there is information out there on the connection between Breast Cancer reductions/protection on those ladies using Estrogen Therapy after a complete Hysterectomy. This was something that was known even by the WHI studies but wasnt widely published due to it being against the flow of hysteria at the time.

Also in relation to your own very difficult situation there is also good evidence that being on HRT can aid the healing process.
Hope you get what you need to support you through this.

Thoughts are with you groundhog.

[Joyce]

I've re-read this so many times groundhog. I really feel for you. Such a big decision to make.

With regards to family commitmemts, is there any way your mum could get help from carers? Maybe your sister could could get help with her children from someone other than yourself. You need to look after you too.

They discovered I had adhesions when I was under the knife to get my ovaries out. Much longer op than was expected. I'd had various ops in that region over the years. Of course my adhesions were an unknown. Maybe op would have been done differently if they'd scanned me previously.

Is it worth getting second or third opinion to help you?

[groundhog]

Thanks ladies for your input.
I know there is no easy answer and Cubagirl thank you for your thoughtful response.  The thing is I have been ill all my adult life but in a away the meno brought relief from the endometriosis and my pelvic pain reduced.  It was only when I had an MRI for something else that these cysts were flagged up again and I was referred to cancer doctors as they thought I had ovarian cancer which had spread to bowel.  This had happened 20 years ago too but the cysts that look like tumours are actually endometrioma.  But the new consultants won't take the chance on leaving them there and so initially they said I must have hysterectomy etc but then my mother had brain haemorrhage - it was a nightmare,  as time went on the surgeons said ok we will monitor you.  But to he situation now is I am reasonably well and havea busy life albeit helping my family - we have a nice life ( despite my moans lol).  But I still have a diseased rectum and suspect cysts and every time if have a scan or anything it's the same story.  It is an agonising decision - my positive head says just do it and I will be fine - my negative head says what if what f what if - and how would my family cope if something happened as I don't HAVE to have this op.  It's a nightmare .  To be honest Cubagirl I'm not getting any support - it's spins round in my head day in day out,  my lovely GP doesn't really know what to say.  My surgeons say I will need the surgery one day and they are fearful if something nasty does develop they aren't sure they could remove it based on my previous surgical experience of adhesions etc.  So they want to havea look to see whats it's like.  If they can remove everything they will,  if they can't they will stop and I will continue to be monitored.
It's a nightmare.  I've had a few opinions Cubagirl but no one will say to leave things - they all say I should have the surgery but agree it will be long and difficult. 
Peegeetip - hello - they have said no HRT because of severe endometriosis.  That said if I had the surgery and they are confident as to what these cysts are they may well reconsider if need be.
Thank you lovely ladies xxx