Finally my full hysterectomy

[littlemisstaxi]

After a two year wait I have finally been given a date for my full hysterectomy. It will be keyhole. I have been given two weeks to prepare for it. Any hints and tips on recovery and any suggestions on anything I need to get in beforehand to help with comfort whilst I recover. Many thanks.

[littlemisstaxi]

I am menopausal. Have extensive endo throughout my body it has affected my bowels and bladder as well as other parts of my body.I have also had pre cancerous cells removed from my cervix. I have had three ablasions and within three months my endo has come back. I have suffered now for over ten years and have thought long and hard about it. I have friends and relatives which have had a hysterectomy and all have different stories which I've listened too. I know the complications that could arise in the future but it doesn't happen to everyone. My gynae made me think long and hard before taking the decision to go ahead with surgery. I feel this decision is right for me. Thank you.

[Endosufferer1 in reply to littlemisstaxi]

Yes, from what you're telling me, I feel the same, especially with the the pre-cancerous cells. I'm sure, it's gonna be fine for you! 💞Have you ever had issues with your lungs (pain in the ribs, back, chest, feeling like you don't have enough oxygen in your lungs)? Have you ever felt terribly bad when flying by plane?

[littlemisstaxi]

I have problems with breathing especially round my period and also round the same time sciatica which disappears a week after. Never really had problems on a plane. I also have nose bleeds and sinus issues too which I'm.sure is down to endo as again worse round period. I think I had about 5 days of respite a month from all the symptoms. Certainly has been a roller coaster ride.

[Galaswan21 in reply to littlemisstaxi]

am the exact same ! But the most worse for me is the pain I get u set my rib feels like kidney or liver

[littlemisstaxi in reply to Galaswan21]

Most of my pain is round my bowel. It was finally confirmed by a gastroenterology that I had lesions on my bowel which my last gynae didn't tell me about. I only found out when I needed a colonoscopy and my gastroenterologist looked at my gynae notes. I do get pain under my left rib which feels like liver. Honestly who would want to be a woman. I feel like the last twenty years of my life has been pain management. x

[AMJ88 in reply to Galaswan21]

I get alot of my pain in what feels like my kidney xx

[Rainbow2468]

I'm so pleased there is someone else who knows this stuff x

[Username12345678]

Hi, I had mine in January last year and it’s the best thing I ever did!

The best advice I got on here was to buy loose comfy clothes a size or two up. Dungarees are perfect as they don’t have a waist band. I bought a maternity pair a size up from asos and lived in them, along with a big chunky jumper dress and a lounge suit from m&s. I was advised to set out a few different outfits and put them somewhere easy to reach. That was a genius suggestion as you don’t need to ask for help or keep bending down.I wish I’d have invested in a better pair of dungarees (Lucy and Yak come highly recommended) as it’s going to take a long time for the tummy to recover.

Although I’m active now, my body went through a lot and it needed some tlc, not skinny jeans! I did underestimate that part. I naively thought that at 12 weeks I’d be back In my usual clothes. It just takes time. Everybody is different and recovers at their own pace but we do need to recognise the huge thing we’ve just done.

There are a few really good resources on you tube to help you recover. Videos that explain how to get in and out of bed, how to lay with a pillow etc. I would also recommend researching a pelvic floor exercise programme. I did Vibrant Pelvc health’s free kegal camp workouts the month before. A few months after the op I started with one of their paid for programmes and now do these daily. She gives such good tips on lifestyle, I’ve found it really helpful.

I also had a buddy on here who was having her op a few weeks after me and the support was really helpful.

Feel free to DM me if you have any questions. Best of luck to you x

[littlemisstaxi in reply to Username12345678]

Thank you. I'm hoping the weather will be better to be able to wear dresses after surgery. Have ordered looser pyjamas in preparation. The Pelvic floor exercise program seems like a good shout. I've always looked after my Pelvic floor but was worried about the after effects of surgery with this. I think I'm more worried about after surgery recovery than the actual surgery. x

[Username12345678]

I’d just like to point out that prolapse isn’t a given. If you look after and properly build up your pelvic floor muscles you can avoid this happening. For some of us, a hysterectomy is the only way to get some relief from the pain and suffering so it’s important to have a balanced view.

[Mrs-Geography]

Hi, am 5 weeks post op (keyhole) and it's been a rollercoaster. Emotional and very tiring.I had read about it being a big op and that takes time but I really wasn't prepared for how much it knocks you off your feet. I guess what am saying is just be kind to yourself, set small goals like getting up and moving.

I felt really good in the first week, not much pain (paracetamol sorted it) which lulled me into a false sense of security as week 2/3 was really hard, more pain around the incision sites which really got me down until someone else said that's what happened to them as more of the swelling etc started to reduce.

Eat little and often to start with as I found bigger meals made my stomach swell which becomes so uncomfortable.

Great tip above about having things to hand, I got a tote bag that I could put my book, pain killers and my bottle of water (keep drinking lots) in to move around rather than trying to carry too much or forgetting things and when you find the comfy spot for an hour wanting to read but couldn't was so annoying.

I have really struggled with hot flushes from pretty much day 1 so I would recommend lighter bedding or cooling pads if you can to make sleeping a little more comfortable from the start.

Overall you will figure out what does and doesn't work for you, but main thing is take your time, accept all the help you are offered and be kind to yourself. I've started to think about what I want to do to get back out so have something to aim for but still have days when I just sleep and still sleep the night through.

Message me if you want to know anything else or need someone just to talk to. 🙂

[Username12345678 in reply to Mrs-Geography]

it does get easier! Make sure you don’t rush and you take the time your body needs for it to recover x

[littlemisstaxi in reply to Mrs-Geography]

Thank you. I'm currently making a list of things to prepare and get. Cooling pads are a great idea. Hot flushes for me are bad enough now. I can imagine they will gey a lot worse post op. My best friend who had surgery five years ago is coming to stay for a few days to help me. Do they only suggest paracetamol for pain? I'm half expecting something a little stronger. x

[Username12345678 in reply to littlemisstaxi]

I was discharged with a weeks worth of stronger painkillers but only used them for the first night. I didn’t need anything more than paracetamol after that. Lots of peppermint tea for the shoulder pain that the gas causes!

[Jooniper]

Wow, I don’t want to jump in on your thread here and take attention away from you but I am hoping I can follow your journey. I have been off work now since the start of March due to severe pain which they think is linked to endo. Have even spent a week in hospital because of the pain and now it is being managed with a mix of morphine and Gabapentin. After my first consultation, I’ve been told to go away and think about a hysterectomy. Where I am it is a 66 week wait for the op (NHS), so I am exploring going private if I can. I will be 48 next month. The first reply has really frightened me as I was hoping my quality of life would begin to improve. I will look out for you posting in case you feel you can update, wishing you all the best

[littlemisstaxi]

I am going to try and update as much as possible with my journey post op. The decision to go ahead was so daunting. I've listened to so many different stories from friends and family post op and the concensus is best decision they have ever made. I'm 47 and I had long conversation with my gynae with pros and cons and he gave me 6 months to seriously think about it. Not a decision I have taken lightly. Almost two year wait for the actual surgery due to long waits at local hospital and nursing and doctors strikes. But it gave me extra time to make sure I made the right decision. I have suffered with endo for years and have simply had enough of pain and discomfort. I am hoping it will offer relief. Unfortunately two out of three of my daughters have inherited endo from me they are in their twenties and have suffered so much already.

[KMJ2022]

Just recovering from surgery. First few days are painful and then you will hopefully be over the worst of it. I would advise drinking peppermint tea to help reduce gas. Your doctor at the hospital can prescribe peppermint solution which is more effective. Ask for this as quickly as possible to reduce gas build up which is extremely painful. Best of luck. If you are NHS, be prepared for cancellations. My surgery was cancelled 4 times, finally got a last minute cancellation slot.

[Katiahead]

I am having mine done in two days Wednesday plus removal of two 14 and 18 cm masses and two fibroids. Thank you for adding the question as all responses are useful. Sending hugs and best wishes for your surgery. It's so scary and hard to know what the right choice is ❤️

[littlemisstaxi]

Hope all goes well for uour surgery and thank you. Sending you hugs and best wishes too. Please keep me updated on your progress post op. x

[Katiahead in reply to littlemisstaxi]

Just to say I had lap surgery for removal of my gallbladder two years ago. Sounds silly but putting a seatbelt on in the car was paiful. I would advise having a couple of cushions for the journey home so you can put them in front of you and put the seatbelt over them to make it a bit more comfy 🙂

[Amyrose84]

Hi,

I would advise you to join the hystersisters forum.

I did after my hysterectomy 9 weeks ago and you will find a thread for people who have the op around the same time as you. Everyone is really nice and helpful.

There seems to be a lot of negative and false information given on this forum.

All the best for your operation, it’s one of the best decisions I’ve made!

[littlemisstaxi in reply to Amyrose84]

Thank you so much. I will look into the forum.

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi littlemisstaxi what a great post and it has generated some brilliant responses, so thank you everyone. Amyrose84 I am sorry that you have found that this forum to be negative and providing false information, I would like to assure you that we encourage all contributions to any post but sometimes they can fall short, but we are here to manage that.

We really are stronger together. littlemisstaxi good luck with the op and Amyrose84 I am glad to know that your recovery is going well