Endometriosis UK

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Hysterectomy in 3 days

Just thought I’d post to see if anyone else is in the same position. I finally got a date for my total hysterectomy on Monday 24th Jan (providing I pass tomorrows covid test)

I’ve read lots of helpful posts from people on here who have had the op and have kindly shared tips. I feel ready ‘practically’ but I’m starting to get really nervous about what life with be like afterwards.

Any advice/experience/words of wisdom are most welcome!

Would really like to hear from anyone with imminent surgery who might like a virtual buddy through this process 😁

Thanks and take care all x

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Hey there! I’m 8 days since being wombless! Had a total laparoscopic hysterectomy with ovaries left..

Have a look at my post it gives details about the hours after the op. Feel free to inbox me and I’ll happily keep you virtually company.

One thing that overwhelmed me was the feelings of relief and thankfulness it was all over.. my health was rubbish for two years and to know thats behind you feels awesome.

Don’t be scared, be excited 👍

Drink so much water! It’s important to stay hydrated. Try and have some lactalose in the house for when you become constipated, it makes it easier. Lots of big pants and loose clothes as well as sanitary towels. Painkillers essential. I’m four weeks post op so feel free to message if you have any questions. Just listen to your body x

Sorry to ask on someone else’s thread..but how long did you take pain relief for please? I’ve gone two days with out needing anything and my stomach this evening is slightly aching and uncomfortable…xx

That’s ok lovely, I’m sure it may help others. The first two weeks I took it religiously every four hours. Paracetamol and ibuprofen (the latter with food or it doesn’t work apparently). I also had codeine for when it got bad. The third week I took it when I felt I needed it. Now in the fourth week I don’t really take it much but every body is different. So early on I would take it when you feel a twinge lovely, it will help x

On that note I’ve taken 2 paracetamol 😂 thank you! Maybe I’m trying to run before I can walk. It’s funny I feel so happy mentally it’s easy to forget I’ve had major surgery 🤦‍♀️ Thanks for the advice xx

Of course. I’m guilty of it too. I got sent back into hospital 2 weeks after and twinged my back a couple of days ago. When they say don’t lift anything, really don’t x

Thank you both! It’s so good to know there are folk out there who know how I’m feeling 😁 it also sounds like you’re doing good too!

I'm a few weeks behind you. Having my total hysterectomy on 1st march, so will be keen to hear how you get on, sending love xx

I certainly will. I feel like I’ve been preparing practically for months but as it gets closer I feel really unorganised and too prepared all at the same time! How are you feeling about yours?

I'm really not sure if I'm honest. I think my brain has it sorted, very practical! But then I think I'm internally flapping...I can't help look it up at every opportunity, as if somehow I'm going to find out something more than what I've already researched!

I’m doing that now 😂 not that it’s going to change anything!

I know right..how many times can you look up the same thing!! Really stories help with prep but sometimes I think we can become obsessive with them! Of course I'm a few weeks away whereas yours is imminent, so I may be proper flapping come the last week of Feb! Have you got kids? I've got a 3.5 and 9 Yr old, and a husband that is away the first weekend after my op (planned since pre covid) so that will be fun!

I'm 7 months post hysterectomy, at age 30 and one thing I will say is everyone prepares you for the physical effects of the surgery, but one person, professional or otherwise, tells you how to prepare or what to expect emotionally after it. Look after your mental health as much as your physical, if not more, physically we heal quite quickly, emotionally it's not the same. No matter how much I was ok about it, not having kids ect, the loss I felt when I woke was unreal. Prepare mentally as well not just physically. Hope it all goes ok for you.

Thank you Lynne. It’s a massive thing to have to take on and I really feel for you having to do it at 30. How are you feeling about things 7 months in?

How long were you on the waiting list for. I am still waiting for mine and its been 6 months. Hope everything goes well for you x

Hi there, 9 months on waiting list for this op but I’ve been seeing my consultant and trying different treat pimentos with her for 5 years now. I put myself forward for a cancellation/last minute option. I literally mentioned it every time I spoke to my consultant or her secretary. I run my own business so am lucky that I can be (fairly) flexible. I was literally saying I could come in the next day if they could fit me in! Don’t know if this made any difference.

Thank you.. I said the same but might chase them again next month. Just want a date so I can plan my year. Hope you're recovering is quick 🥰

Completely understand. It’s awful having this hanging over your head. I hope you get a date soon and all goes well

And thank you!

Good luck with your op!

I'm 6 weeks post op - I had a total laparoscopic hysterectomy and got rid of everything except my ovaries.

I don't really have much to add to what's been said above, except I can already tell you only 6 weeks on that it was the best decision I made! Yes, some days have been difficult, but the pain from my adenomyosis is now gone and for that I'm thankful!

After surgery, I had a couple of really emotional days. This might be because I also had a coil removed and had a bit of a hormone crash, but it's worth being aware of because if you randomly find yourself crying for not reason, you defo aren't alone!

Id highly recommend seeing a pelvic specialist afterwards at some point - I saw one yesterday because I was worried about the risk of prolapse and she really set my mind at ease and gave me some amazing info about my post-op body.

Good luck ❤️ If you've got any questions, please ask!

Thanks for taking the time to reply and I’ll definitely look at seeing a pelvic specialist. I’ve been trying to work on my pelvic floor muscles for a while and understand that 4 weeks post op I should start these again and continue forever. I hear you about the emotional side too. I stopped taking the hrt on Monday and I’m already having hot flushes so I imagine I’ll be an emotional mess next week! Hope your recovery continues well x

Hi,

I’m 12 days post-op hysterectomy and oophorectomy and excision of endo and was lucky enough not have any bleeding post-op and not need pain killers regularly after day 3. I’d recommend taking HRT before and after hysterectomy, shouldn’t be a reason to stop unless you’re on oestrogen tablets - which are now outdated form of oestrogen and put you at risk of blood clots, the gel and patches don’t put you at any risk of blood clots (despite the literature inside) there’s a campaign for these to be removed and updated with the correct info. Check out menopause Dr online, Instagram etc. for all help regarding menopause symptoms. You’ll need progesterone too if you’ve got endo to prevent recurrence of lesions afterwards.

Good luck

Thanks for your reply, I hope you’re feeling good today. I also have been lucky to have not had any post op bleeding. I’m up and about albeit slowly and at home. I’m managing on over the counter pain relief too which has really surprised me. I was taking tibilone prior to the op so will be going back on it in a week!

Morning, thinking of you all brave ladies who have had your surgery recently xx I will be 2 years post op after my total abdominal hysterectomy in March. I had a fibroid the size of a grapefruit and very heavy periods. My ovaries were left in but during the surgery they discovered both were polycystic and I had some endometriosis.

I recovered well from the surgery, lock down started 2 weeks into my recovery and having my husband working at home helped. The first two weeks were the hardest, take everything slowly. I found having a pillow under my knees and having my legs up really helped. Sitting position with my feet on the floor was uncomfortable for several weeks for me.

There are lots of benefits to the hysterectomy, I was 43 and not planning any more children but still felt a bit sad to not have the option. Life has been fine since, it’s amazing not to have the heavy periods - sometimes I’d get up and have a rush of blood and it was pretty stressful hoping I could change my pad before it leaked. Don’t miss that!! Also no tummy pains and need a wee less now

I have put a bit of weight on and my libido has been a bit off, so I recently started HRT gel - it could be my ovaries haven’t been producing what they need to but also I could be perimenopause now - which would be normal for my age. I don’t have any other symptoms. I wish you all the best, everyone is individual, do what is right for you and don’t overdo it xx Good luck with your surgery, you will be fine xxx

Thank you for your reply. It’s really good to hear that it’s been a positive thing for you. I’m 45 and in a similar situation to how you were. I also have adenomyosis. Sometimes the anxiety of that rush of blood and trying to get home before the pad gives way is worse than dealing with the pain. Especially as it always seems to happen when I’m walking the dog a mile away from home 😂

It’s lovely to read all the advice and support, in NI i have literally been waiting since 2012 the first time I asked for a hysterectomy due to the pain and being ignored for for 15 years prior, then when they finally discovered the massive endometrioma in 2017, I asked again and when they finally managed to do surgery in Nov 2019…. It’s now 2022 and it may be happening this year.

If anyone has advice on the lead up, books, information etc I’d be grateful. My surgeon hasn’t even bothered to meet me in person, zoom me or spend more than 5 mins on the phone with me in the whole of the last two years after the last surgeon couldn’t even do the surgery.

I’m now having to have a bowel resection due to the delay, but I feel I’m unprepared tbh. I’m ok with the womb being removed and my left ovary etc I’m not confident about my right or the resection.

I’ve only been told two days ago that I have to stop my chemical menopause (Synarel and HRT Tibolone 4-6 weeks before surgery). I’m petrified - I’m literally bed bound with no hormone suppression, GI, Bleeding and Pain and I’m on massive pain relief already Buprenorphine patches.

I’ve waited so long.. I almost feel scared just due to the wait!

Hey,

Firstly I’m sure it can’t be worse than what you’re going through now. Secondly you can have HRT gel, Tibilone is so outdated nowadays so you can take that now and during surgery - it’s not metabolised by your liver so zero risk of clots. I can’t stress how informative the info provided by the Menopause Dr - Louise Newson is:-

newsonhealth.co.uk

balance-menopause.com

I found the first few days afterwards very emotional, couldn’t stop crying - but I’m ok now and making a good recovery. Take each day as it comes, get a routine going each day so you’re structured and don’t get too down, I’m actually loving the rest and break from my previous 100mph lifestyle now!

Take care

Thank you for the reply. I’m so sorry to hear how difficult this journey has been for you. I was given a great resource about the surgery. It’s on the RCOG website, a patient leaflet on hysterectomy and what to do afterwards. I’ll see if I can add the link here. Also the Endometriosis uk website is fab if you haven’t already seen it?

rcog.org.uk it’s in the patients section, just search for hysterectomy

endometriosis-uk.org

Good luck with your surgery. There’s a Facebook group that you could join, it’s a closed group, I have found it extremely helpful, I had mine 14 weeks ago now

Thanks. How are you feeling now?

I won’t lie, it’s a long road to recovery, but almost instantly I knew I’d made the right decision for me. I can actually see an end in sight 🤞🏻

Hi I had a robotic total hysterectomy in June 2021 I have suffered from endometriosis nearly all my life I’m 52 & I have never felt so good in my life I know it might sound silly but I was although they had pulled every hormone & pain out of my body best thing just take it easy afterwards and the very best of luck 💞xx

Thank you. Very glad to hear you’re feeling great too! Enjoy your new lease of life ❤️

Thank you! How are you doing now?

Hi I feel great have done from the day I had the op I was very nervous aswell but seriously I was very surprised how good I felt afterwards don’t get me wrong I was bit sore & stiff for about a week but I was on my feet pretty quick but was told the robotic surgery is easier to recover from sorry if I’m going on I wish you all the very best & look forward to your posts of your recovery 💗xx

Thank you

Good luck for monday hope it all goes well for you , we are all on here if you need to chat any time . Takecare

Thank you 🙏

I have been on the waiting list for total laparascopic hyst including ovaries, and complete excision of stage 4 endo for 2 years. Covid has caused many problems. I'm currently 17th on waiting list and 1st on short notice cancellation list. Hoping it will be soon. It has really messed with my mental health. I'm happy to be your virtual buddy. Good luck for Monday.

I was 65th on the list back in Sept so things have moved quickly. Fingers crossed yours won’t be too long now

How do you find out where you are on the list?

I called my consultants secretary and asked for a progress update. Obviously they can’t say for definite when your op will be but she was able to tell me where I was in the waiting list. It’s only a guideline as things can change rapidly but it at least allowed me to realise it would be months not weeks

That is really helpful. I will try to get my consultant secretarys direct number then rather than the general outpatients. Thank you so much

Good luck for Monday I’m 12 months post op total abdominal hysterectomy and ovaries best thing I ever did my only side effect is joint pain but can live with it I drank peppermint tea and took lactulose lots of rest afterwards no lifting i had co codamol for a couple of weeks xx

Thank you

Thanks everyone for taking the time to reply, it’s been very helpful. I’ve passed the covid test so fingers crossed the op doesn’t get cancelled tomorrow! Take care x

Hey good luck I’m 2.5 weeks post op. Feel great just relax and trust the docs you’ll be fine…that coming from a massive baby who is scared of having an injection… I somehow managed to keep a hold of myself and I can say I feel like a new woman without my womb! Good luck let us know how you get on xxx

That’s so great to hear! I’m feeling really good actually. Tired and a bit sore but I’m moving around much easier now and it’s only been one week! I now understand what people mean when they say they feel better straight away. The pain and discomfort I’ve felt since waking up from the op is nothing like the pain that endo & adeno give you so it’s a hell of a lot easier to manage and I can see an end

Hey,

Good luck with the operation. Mine was in March last year and, like others, is the best thing I’ve ever done. I had quite bad adenomyosis and it’s was quite strange really, I felt so much better as soon as I woke up after the operation. When my parents saw me on zoom they were amazed I looked so well. I spent one night in hospital, was well enough to travel home five days later (from London to North Yorkshire). I was off work for 6 weeks, really took the time to rest but also to walk a little everyday after a couple of weeks.

I think I might need to go on HRT but managed to get myself stuck with long covid so that’s taken over a little (and is much more than the operation recovery!)

Best of luck. You won’t look back x

Thank you! That so encouraging to read. If it helps, I’ve found the hrt really good. I’ve been in medical menopause for a while and it was great to calm the side effects.

It’s 1:35am Spain time and you are either asleep or are throwing up I was the latter because I had to have more anesthesia which my body doesn’t like but by tomorrow you will be all good sore but good.

Haha! You called it right, throwing up 😬 always get sickness after the anaesthesia

Hope you feel better now. I threw up all night then was fine. I also have fibromyalgia and take codine so I am always blocked up but at the moment I just couldn’t go so gone through a box of laxative which has started moving but it’s so painful so please look after your bowels so you are not in pain like me. It’s 4am and I am on the net looking at things to make me poo. What a life don’t think it can get better 😂

Bless you, that’s so stressful. They have discharged me with lactalose so hopefully that along with the gallons of peppermint tea I’m drinking will have some effect x

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