Surgery Advice Please 💜: Hi Ladies, I am... - Endometriosis UK

Endometriosis UK

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Surgery Advice Please 💜

Snoozehead profile image
14 Replies

Hi Ladies,

I am 32yrs old. Found out last week that it’s a 22wk wait for surgery in Aberdeen. Today I received a call from my private surgeon, now I have surgery next week for total abdominal hysterectomy and removal of Grade 4 Endo from PoD, bowel and ovaries. I am enduring a whirlwind of emotions at the moment, chemical menopause doesn’t help and I’ve ran out of HRT 😣

My questions are... Can anyone please tell me how long i may be in hospital for (if all goes as planned of course) and what on earth should I take with me? Hospital is 2hrs away from home xxx

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Snoozehead
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14 Replies

With the extent of what you’re having done, I’d plan on at least staying a night just to be prepared. However you may be able to go home the same day depending on how it goes. My mother had a complete hysterectomy and was out the same day. I had endo removed and was out the same day. But together I am not 100% sure.

Bring a toothbrush, socks, nightgown that is loose (you won’t want anything squeezing your abdomen or anything in that area!), possibly some music or games to play or something to watch.

I’m sorry you’re having such a rough time, but you’ll be glad once it is over! Good luck to you and feel free to message me x

Snoozehead profile image
Snoozehead in reply to

Hi there Zunali, thank you so much for replying ❤️ That’s fantastic to know, my surgeon has advised because it’s such a complex surgery, scheduled 7hr operation, an estimation of up to 2 weeks in hospital with a min of 4 month recovery, and no driving for 12-14wks. I can’t quite believe it though, hence the need for asking 😟 How did your recovery go? And where did you have your endo, if you don’t mind me asking xxx

in reply to Snoozehead

Everyone heals and handles surgery differently. But if they are suggesting that, I would prepare for the worst.

My recovery was pretty smooth. I had endo in my peritoneal area. I have a Day by Day update on my page with much more detail. I’m currently recovering from gallbladder surgery so I’m kind of out of it at the moment, so my apologies if I say something odd!

Snoozehead profile image
Snoozehead in reply to

Oh no, how awful...I am so sorry to hear this Zinali, please feel better soon and heal as best and soon as possible 🙏🏼 I am a proper menopausal wreck, so I’ll probably wake up tomorrow and have a wee cry for you! Haha. How are you coping with all this? And I certainly shall keep up to date with your page.

Thanks again xx

in reply to Snoozehead

It’s okay I have a very supportive family! I will get through it. I’ve been having a very tough time as I just had surgery in August so I’m an emotional mess. Plus I’m currently in school right now but my professors are being very supportive through all of this so I am thankful for that..

Good luck to you in your journey and I hope the surgery goes well. I’ll be here to talk to if you need someone to vent to!

Annointed1 profile image
Annointed1

Hi I had a total abdominal hysterectomy last year, That was a private hospital ( through the nhs) that I went in, I was in for 2 nights. I did take magazines and books but I didn’t feel up to consentrating on them so just listened to my iPod. I took a loose night dress incase I couldn’t wear a waist band straight away but managed to wear loose jogging bottoms to travel home in then just take the usual things like toothbrush and smellies. I found I had shoulder pain after the op the nurse told me it was from gas they put into my abdo during the surgery, they recommended peppermint tea and that worked a treat and was good for any nausea from the anaesthetic so maybe take some of those in if you like it. Hope all goes well for you🙏🏻

JOSANDY40 profile image
JOSANDY40

I have beyond stage 4. For what reason are you having all this work done? Have you seen a proper Endometriosis Specialist? I was told that they wouldn't be able to operate again without losing bowel and bladder, the risks were higher, a menopause early and the problems caused by a opp would likely give me other issues and pain. Have you had a second opinion? Well if you know all the risks and are happy my best wishes, remember just cos they want to operate, give yourself time to make a correct choice. My hugs J x

Snoozehead profile image
Snoozehead in reply to JOSANDY40

Hiya Josandy, thank you for your message 🧡 Yes I went private, direct to the Endo Specialist in north of Scotland. Completely bypassed GP and local Gynae as I have many bad experiences with them. I actually requested a full hysterectomy as I have a prolapse also, only after a Lap they discovered Grade 4 Adhesions, thankfully explains 5yrs of bleeding daily. I have no life, slowly degrading to the point I cannot take my dog for a walk or kids swimming. I have been sent the risks and benefits, signed legal papers, had colonoscopy, hasn’t penetrated bowel, and have met all my surgeons ☺️ My chemical menopause has been ok to manage for past 8months, I couldn’t face seeing a 6th year lifeless ...I must do this not only for myself, but my children , husband and my sanity. If you don’t mind me asking, where are you at in your journey...are you keeping well at the moment? I am so happy to get rid of the morphine during flare ups As well 🙏🏼

With love xx

JOSANDY40 profile image
JOSANDY40 in reply to Snoozehead

You are very lucky. a man that has stood by you and blessed with children. I have been much less fortunate. 2 husband the 1st would hit me. Both men I realise now had huge egos, both men lacked being sensible. Both known musicians but not grounded, I was and helped them with their careers. My money from family death and my high end career funded their careers . My second gained hugely stepping up. Because of my health I can hardly cope now, I get Lodgers to manage. I ask my ex for help but all he could say was I never bought him a Ferrari! When he left he took 15000.00 for flying lessons. I was completely blown off my feet, his blame was on me. He took me for every penny. I have not recovered from the stigma placed on me. The loss of family, business people that he pays. The system of Divorce fails ill people who have money from their income from 20yrs earlier before the relationship that was earnt under huge pressure of this illness Endometriosis, some days I would fall asleep at my desk. I went through so much. It was all for nothing just pain. It was so I could provide for myself as I couldn't work further. I see his wealth and it all compounds my mental hurt. He still uses my video editing, my photo's which adds to his income. I can no longer follow the matter due to financing, stress and illness. There is something very wrong with the law. He was UN a win , win permission!

in reply to Snoozehead

Babes the gynie in aberdeen are the worst i refuse to go back there xx

Snoozehead profile image
Snoozehead in reply to

Hiya, I refused to see an NHS Gynae, so I am under the endo specialist at Albyn, along with bowel surgeon xx Sorry to hear you’ve also had bad experiences 😞

in reply to Snoozehead

after i had my op the lassie who done it came up to me and said i couldn't have kids walk away from me and wouldn't answer my question then i got sent back to her she never even looked at me and told me i was fine and off i go i heard there a good gynie at albyn but i cant really afford the money for there... xx

jinka profile image
jinka

Hiya....I had a full Hysterectomy about 2 years ago! NHS didn’t want to do it as I was young (38) Endo had ruled and ruined my life and they wanted me to have IVF again which was not a good choice for me as my first time had failed and the IVF treatment was so very intrusive on my mental and general health!

I came on this chat room so many years ago for help and advice... I did not get any! All I found on here was unfounded and unrealistic advice! I really hope this has changed!

My Endo was everywhere including my bowel... My Hysterectomy saved me! I could not manage the pain myself anymore,

I had a very difficult Hysterectomy.... was in theatre for 9 hours! I stayed in hospital for 2 nights.... then I was out! The length of time you will be in hospital for depends on your recovery rate and ....how much you want to go home lol!

I wish you all the luck in the world but to be honest you will be ok... I hope you find the end to the nightmare that is Endo! Xx

Tallulah182 profile image
Tallulah182Moderator

Hi, I had a total hysterectomy, ovaries removed and also a bowel resection, this was down via open surgery so i have a 9 inch scar right down my stomach. I was kept in for 5 nights, 1st night was in high dependancy then the next 4 in a normal ward. I was the same the hospital was a 2 hour drive from my home. I took, nighties for at least 4 days, slippers, some bed socks, dressing gown. Plenty of reading material, i took my ipad in aswell so i could watch some shows i had put on before going in.

Diluting juice, i was only allowed to drink water when i came out of my surgery due to the bowel resection, i had my surgery on the wed and wasn't allowed to eat until the friday night. I took some chocolate, grapes and yogurts in as i'm quite a fussy eater. The best thing was taking some lucozade in too as i found it helped give me a bit of energy.

Toiletries all the usual stuff, take some sanitary towels in case you need them. Prepare for the bloating after the surgery that was the worst pain for me but if you get up and walking, moving or lying on your side with your knees up helped me with that. Ask the nurses for peppermint tea too that helps! Just to add i was also 32 when i had my surgery. If you have anymore questions just give me a message x

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