Just been given a short notice appointmen... - Endometriosis UK

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Just been given a short notice appointment for hysterectomy & endo excision. I don't feel organised & ready, any advice?

Bettyheslop profile image
10 Replies

I've been on waiting list for surgery since Feb so I shouldn't be surprised really, I just thought there would be a little more notice. The consultants secretary just phoned me and asked me to come in for surgery on 20th June. I said yes because I'm desperate to get it sorted and in a way it's good timing as the children will be at school during the day, I had dreaded it being over summer hols. But now I've been given 10 days notice I just don't feel at all organised.

I had lap last year and got ready by freezing meals, keeping up with washing etc. Did all of the usual stuff, stocking up on painkillers and peppermint tea. But obviously this surgery is much bigger so recovery is going to be harder. I'm having hysterectomy but surgeon will try and keep one ovary depending on how damaged it looks and extensive endo excision.

Does anyone have any advice on how they prepared and what recovery times were like afterwards, how long was your stay in hospital?

I don't work but am a carer for my 12 year old who has special needs and needs help with everyday tasks, washing, dressing etc. My husband is having 2 weeks off to help me but after that I think I will be having to ask everyone I know if thy can spare a bit of time to help.

In one way I'm thinking yay no more vile periods with flooding and clots but in another I'm thinking agghhh, there is so much to do to get ready. Also I'm 36 so if I don't get to keep an ovary I'll be going on HRT which is also something that brings a million questions!

Sorry it's a long post, any advice or comments would be appreciated

Xx

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Bettyheslop profile image
Bettyheslop
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Tboag profile image
Tboag

That's great news, sounds like you are more organised than you think, it's good that hubby can take 2 weeks off, I had a hysterectomy July last year, in hospital for 3 nights, and it was easier than I thought it would be, keep up with pain killers and rest well, small walks as soon as you feel ready,

Good luck, it's lovely not having periods, xxx

Bettyheslop profile image
Bettyheslop in reply toTboag

Thanks it great to hear form someone's who's been through it. A 3 night hospital stay doesn't sound too bad, I wouldn't want too stay much longer though. I think I just don't feel organised because I have 10 days to get ready, normally if I'm was just going on holiday for a week I would be writing lists a month before and getting ready!

Really I should get off here and start cooking and freezing! I am having a horrid period now, it's great to think it will be the last one.

Xx

JeanOsborne profile image
JeanOsborne

Hi Hun, glad you have a date. I had a TAH, BSO and excision 3rd March. I must admit I didn't prepare anything as I'm very lucky to have a wonderful husband who took a month off work to look after me.

I do wish though someone had warned me about the constipation. My bowel was badly stuck to uterus.

I was initially supposed to be in hospital for three nights , but unfortunately I had an internal bleed after surgery and needed a blood transfusion so ended up staying 5 nights.

I was vey luck as I had very little pain afterwards, but I'm sure whether this was due to the fact that I was so used to being in pain for almost 30 years, that I didn't register it.

You do get very tired afterwards but it does improve.

I don't regret having the op because I now feel so much better despite having another problem which is causing me pain

I didn't start hrt until 2 months after op as consultant wanted to let things settle first. I was initially out on Livial, but found this did not work for me so changed to Elleste solo.

I'm more than happy to answer any questions you may have.

Good luck Hun and keep us updated.

Bettyheslop profile image
Bettyheslop in reply toJeanOsborne

I wish he could have more than 2 weeks off but it's just not possible. I know realistically he will cope and everyone will be fed and watered, I suppose I will just have to accept it won't be how I would do it.

I'm going to try my best to make some frozen meals this week and sort a few things out. My youngest (the one with special needs) isn't very good with change and things being different so I suppose that worries me too, how he will cope. My brains all over the place today, I'm sure when I have written a few list I will feel more organised.

If you don't mind me asking, how did you know you had an internal bleed? Was in obvious?

I will keep in mind about constipation and get something ready for it.

Thanks for your reply, I might think of a load of questions in the next week!

Xx

JeanOsborne profile image
JeanOsborne

They were regularly taking bloods which showed I had a low blood count, my blood pressure dropped and I had pain in my shoulder blades. Was sent for a emergency ct scan which confirmed it and that it had stopped. I did need five units of blood though. And was also on I've antibiotics. Was then on oral antibiotics for two weeks and iron tablets for one month. Although I had to stop iron tablets after two weeks as they were causing severe stomach cramps and adding to the constipation problem. At this point I had another blood test which showed blood count was normal and iron levels were really good, so that was good news.

Are you having yours laparoscopically or abdominally and are you having cervix removed?

Bettyheslop profile image
Bettyheslop in reply toJeanOsborne

Not nice for you but good to know they kept a close eye on you and spotted it quickly.

It's being done laparoscopically, my consultant is really into the least invasive treatments. He has also been teaching advanced laparoscopic techniques for over 20 years so hopefully that will cut down on the recovery time. I have been over it and over it with 2 different consultants and have chosen to keep my cervix. Seems mad to some I know as I know there is some endo hidden underneath it but to me the most important thing is to stop the bleeding and flooding. I am having endo excision elsewhere and my surgeon has the experience and skill to deal with it but with all of the extra risks and being so close to my bowel I have decided to leave it alone. My main pain is coming from uterine contractions so obviously without my uterus I will be in a lot less pain.

The surgery I am having is already expected to take a good few hours and I don't feel I want to make it even more complicated. It's a hard choice but I feel happy I will get the results I need for a better life. Consultant says he's is happy to go back in and take cervix if it really bothers me in the future. So hopefully it will all go as expected.

Xx

JeanOsborne profile image
JeanOsborne

I really can't complain about the care I received , they were fantastic. And my surgeon is a council board member of the BSGE so I know I was in good hands.

Two days after my surgery he had to fly over to India. But he kept emailing ward to check on me. Then when I came home he phoned me from India to see how I was , I just couldn't believe he did that and still can't. I've seen him twice so far for follow ups and will see him again beginning of August, unless I need to see him before that and I know that he will fit me in. I've never seen his registra only him every time. Feel I landed on my feet with being referred straight to him .

I really hope you get the result you're looking for, but if not at least you know he's happy to do another op later on if needs be.

Good luck and I'm here if you need anything.

Bettyheslop profile image
Bettyheslop

Your surgeon sounds lovely. It is nice to know you are in good hands, I did lots of research about mine and I know he's very experienced but also when I met him he explained really well all of the options available to me and all of the likely outcomes and in a way that I fully understood.

It makes such a difference when you understand why this is all happening and what you can expect. Actually everyone I have come across regarding my Gynae problems have been great, I asked to be referred to the surgeon I have now and it was no trouble. I feel lucky when I read what some people have been through regarding their care.

Thanks for your messages and info.

Xx

JeanOsborne profile image
JeanOsborne

He is. I also did a lot of research on him before my first appointment,as I was so worried that I would end up with an inexperienced surgeon. It had taken me nearly 30 years just to get someone to listen to me.

I was only sent for an ultrasound as GP suspected fibroids and I'd been ttc for 4years with no success.

Us showed 6cm endometrioma and I was referred straight to my surgeon at the BSGE centre. So I feel very lucky that I got him without having to fight.

My first meeting with him was great. He really listened to me . Then when I had my diagnostic lap and he came to see me after to discuss what he'd found, I swear I could see a tear welling in his eye as he explained the bad news to me.

Through out everything he has been so kind and understanding. Always makes me feel at ease .

From everything I've heard about him from his colleagues and nursing staff there, he's one of the most caring and thoughtful surgeons.

At my last follow up I actually gave him a big hug .

Hopefully yours is just as brilliant and caring.

Bettyheslop profile image
Bettyheslop in reply toJeanOsborne

It's lovely to hear such good experiences, you hear so many negatives.

More often than not our NHS is so fantastic xx

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