Hysterectomy : Hi! I was diagnosed with... - Endometriosis UK

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Hysterectomy

EndoSuckss profile image
21 Replies

Hi!

I was diagnosed with adenomyosis following a lap for endo excision on Wednesday. I already have the coil and, clearly, it's not helped the adeno so my consultant said the next option would be hysterectomy - although we will discuss it further at my post-op follow up in a few more weeks.

Has anyone had a hysterectomy for adeno? If so - how was it done? I've read online about the different options (laparoscopicly, Vaginal or abdominal) - just trying to mentally prepare myself for what's to come! She said my uterus is twice the size it should be - so I'm wondering if it's too big for some of the options?!

Thanks in advance, if you've got this far ha ha!

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EndoSuckss
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21 Replies
AllthatGlitters profile image
AllthatGlitters

Hello again 🥰I have a bulky uterus and told it will be keyhole (3 incisions). I am however going to ask her the question of is she sure because of the size, I never thought anything when attending my appointment but it’s only when you go home and start reading things isn’t it. How can get get something bulky out of a small incision? 🤷‍♀️🤷‍♀️🤷‍♀️🤷‍♀️

Smokey2020 profile image
Smokey2020 in reply toAllthatGlitters

Hi. I’ve just had this op and they went in keyhole but removed via vagina. In my case they also completed excision of endo and cysts via keyhole. I was unaware of the vaginal removal until I asked at my pre-op how they removed things via such small exits with keyhole 😂

AllthatGlitters profile image
AllthatGlitters in reply toSmokey2020

Thanks so much for letting us know, we’re you sore down there afterwards? How do you feel now after your op? X

Smokey2020 profile image
Smokey2020 in reply toAllthatGlitters

No soreness at all. I’ve had some complications but I was unlucky to get an infection which I’ve been told is very rare so I wouldn’t worry if you can. Recovery has been slow but that’s due to the infection. I would say rest the first week with only small walks about the house then go from there. No lifting and minimal bending if you can. I’m not on any pain killers now after years of living on them but only 5 weeks post op so too early to know if that’s endo pain gone for good but certainly good signs just now.

AllthatGlitters profile image
AllthatGlitters in reply toSmokey2020

That’s good and I hope you continue to feel better and not have to take any meds. Will you get a follow up? X

Smokey2020 profile image
Smokey2020 in reply toAllthatGlitters

I have 3/6/12/24 month check ups as I agreed to be part of a study. I also have the luxury of being able to email the endo nurse who has been excellent with guidance and support.

AllthatGlitters profile image
AllthatGlitters in reply toSmokey2020

That’s great you have support 💗

Sham_R profile image
Sham_R in reply toSmokey2020

Just a silly question. I have been diagnosed with Endometriosis and ovarian cyst. I am on the waiting list for my fist lap and I am 29, no kids yet (was hoping to start a family, don’t know how that would go). I have started a new job last month and I have already informed my manager about my situation during the interview to which they said taking leave for rest after surgery would be fine. I told them I may need a week off, but I have to drive for 1hr and 30 min, will it be okay to drive after surgery?

Smokey2020 profile image
Smokey2020 in reply toSham_R

I think they recommend 2 weeks off for a lap. You might find driving that long a challenge as your abdomen will still be healing and it’s crazy how much you use your stomach muscles for everyday tasks. That said everyone is very different and you could be absolutely fine after a week. Perhaps see if working from home is possible even a couple of days your first week back?

Sham_R profile image
Sham_R in reply toSmokey2020

Thank you Smokey, I’ll ask them and see..

in reply toSmokey2020

Hi I'm scheduled to have a hysterectomy and it to done through the vaginal ive currently been on prostap injections and they shrink my lady parts im scared it's going to hurt when i wake up from the operation i can't even insert a tampon its very painful sorry just super anxious about it 🙄xx

Kazh1209 profile image
Kazh1209 in reply to

Hi Lovely,

Ive also been on prostap for the last six months and have my hysterectomy booked for December. I hope you're ok. Feel free to message if you need to chat x

in reply toKazh1209

Hi sorry for the late reply, Oh not long now for your operation how you feeling? im confused on what to do everyone that knows me tells me to have the whole lot out but im scared xx

EndoSuckss profile image
EndoSuckss in reply toSmokey2020

Thank you for sharing Smokey!!! It's been going through my mind all day lol - I'm not even booked in yet and thinking about it!

EndoSuckss profile image
EndoSuckss in reply toAllthatGlitters

Hi again! That's exactly why it's been going round in my mind - she stressed how big it was, but everything I read online suggests keyhole! 😂

Ggrif profile image
Ggrif

Hi! I've just had a total laparoscopic hysterectomy 2 weeks ago. This was because I had adenomyosis. Mine was also double the size and it came out the little holes in my belly. Please don't be worried, I know I'm only post 2 weeks today but I already feel so much better. I've been resting the last 2 weeks and now starting to slowly get moving. If you need any advice or just a chat please let me know. I know how daunting it can be. Gemma

EndoSuckss profile image
EndoSuckss in reply toGgrif

Hi Gemma! Thank you so much for sharing - this has really helped put my mind at ease a bit! It's good to know having a massive uterus won't result in open surgery!

Hope you're recovering well ❤️

Ggrif profile image
Ggrif in reply toEndoSuckss

Hi! I was also worried about open surgery. And obviously some do end up that way but I was told by my surgeon not to worry which in some ways helped. I feel very lucky to of had my surgery now and hopefully I can start to enjoy life more.

Hope you manage to get the op soon as it really improved mine already.

Good luck. Please keep me posted. Gem x

EndoSuckss profile image
EndoSuckss in reply toGgrif

Thank you ❤️ Although I hate thinking there are other people that are going through this torture, there's some comfort in knowing I'm not alone! X

Ggrif profile image
Ggrif in reply toEndoSuckss

Absolutely. I feel exactly the same. Its torture isn't it?

Jmiller623 profile image
Jmiller623

They can do it laparoscopically. They cut it up into little pieces, put it in a bag and pull it through a tube.

I am in the same position as you. Debating on whether to get a hys or not. I’m on the fence.

Sending hugs. ❤️xx

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