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[Armadillo]

Hello Everyone,

I am now on the waiting list for a hysterectomy. I've run out of options for managing my cycle, perimenopause and all that goes with it.

My gynae and gp are great, I trust them. I agree with the decision, I even know it's best and could make a huge difference to my health. ( I have other health challenges)

But we'll I am lost.. numb..finding it hard to say out loud. I don't have family my age or older to lean on. No kids that's some of the grief but peri has started and I am not well enough to try.

I need somewhere to talk, find info speak with others who have gone through this. My hysterectomy is not due to cancer, fibroids, endometriosis but my cycle and menopause so I don't fit in some forums.

Really very scared, overwhelmed and lost.

My Gynae will see me in a few months to check uterus health as oestrogen only hurt ( severe progesterone intolerance) and discuss things then.

No idea when my operation will happen.. I jump everytime the post comes but I know it's still too early was told about a year.

Can anyone please direct me to online hysterectomy support please.

[CLKD]

hystersisters rings a bell  - don't know if it's UK or US-based.

I am sure that others will be along with advice.  In the mean time, eat as well as you can to prepare your body B4 surgery.  Make sure that the freezer is filled with quick meals and buy nighties that 'do up' at the front, not those 'over the head' designs because you may be stiff and sore after.  It's quicker on the Ward Rounds too ;-). 

You won't be able to lift anything heavier than a kettle or vacuum flask on your discharge ;-).  Will you have someone at home for support?  If you have a shower it may be easier to use than trying to climb into and out of a bath tub.  If not, it'll be a bucket, bowl, kettle and sponge ;-) and very large towel.

 

[Joaniepat]

There's HysterSisters.com. I  think they have a UK support group and forum.
Best wishes,
JP x

[Amazing grace]

Hi armadillo, really sorry to hear all you are going through I completely understand I too had a hysterectomy at age 43, I was scared and felt a very strong sense of grief at the thought of losing my womb, although I did have family and friends I felt so alone , there are a few ladies on here that have had a hysterectomy but for me personally I found lots of support and advise on a forum called hystersisters , it’s solely for ladies who have had hysterectomy pre surgery, post surgery and all that follows including using hrt , it is American based but lots of English ladies on there , it’s the amazing women on there that supported me through everything, for me it wasn’t the actual operation that I struggled with it was the emotional impact, but 5 years on I don’t regret it and I’m emotionally in a good place , I don’t post on here often but if you need any support please feel free to pm me , take care and wishing you well xx

[Armadillo]

Thank you all three for reaching back.

My other health stuff is chronic illness, so adapted home, part time PA/ carer support and haven't lifted anything heavy in years.

Will look up hystersisters thanks.

I am 43 too.. it's being done as I can't tolerate progesterone and really need estrogen to manage peri..my cycle has always been hell but with my other illnesses it's destroying the little life I manage.

I hadn't thought about button up nighties.. will go shopping when I have a date.

I don't even know how it works with wheelchairs, carers and so on in hospital.. so lots to sort out.

I will have help at home on discharge, hoping for increase in care budget for a few weeks.

It just feels like a cloud hanging over me that crushes me at unexpected moments.

[CLKD]

Of course.  It's a big operation and if your body is already suffering, you may anticipate issues that might not even happen.  There is no logic to worry!

Make those lists!  Get in touch with the Hospital: in Norfolk it's 'PALS' : the people there liaise with relatives and patients - very helpful when my Mum was telling me 'stuff' that actually wasn't happening  . 

If any of the services that you envisage being helpful, might it be worth while contacting them even though you don't have a date?  To be on their radar as it were? 

How is your eating pattern?   When I was suffering with eating and a sudden lack of energy = intense nausea: I contacted The National Association for Pre-menstrual Syndrome [NAPS] who advised me to eat little and often.  To keep blood sugar levels even to avoid that dip.  That is 24/7 so when I got up to let the puppy into the garden in the early hours, she soon learned that there was a biscuit on our return ;-)

[jaypo]

I had a hysterectomy aged roughly 44 and can honestly say it was the best thing I ever had done but that is just my own personal opinion. Hope it all goes smoothly for you x

[mandss]

I am 4 weeks post op from my hysterectomy, I spent my whole adult life suffering from PMT and period pains. Things only got worse as I entered the peri stage, and I tried every combination of HRT going, everything led to heavy bleeding and extreme pain even without bleeds at times. I went private in sept 22 and the consultant said that he could not see any other way forward, so offered me a hysterectomy. After surgery he did say that my uterus was full of blocked veins. I am seeing him tomorrow for my first post op appt. Hysterectomy sisters is a fantastic website and well worth a look. good luck going forward x

[Armadillo]

this forum really is great for holding my hand, setting me straight gently and helping me... thank you.

I am going to look at hystersisters this afternoon.. feel a bit nervous but i need to get informed.. i dont feel i now enough to ask questins.

I am also going to email hospital to ask about things like taking my own wheelchair in... i have a named district nurse i can contact about health needs too but am trying to work out at what point to ask for her input.

Thank you to everyone.. its reasuring to read others have ' been there done that' and ot went smoothly and has been positive.. so pleased fr you all but also gives me hope

thanks.. still numb and not sure.

my husband is trying to speak to my gynaes secretary to find out current waiting list times, if i am penciled in yet for an apointment as thats something he can do and he wants to make this easier.. i think nt jumping at letterbox each day will help