Hi. I had a radical hysterectomy on the 26th June, together with lymph node removal. It was done robotically. I had to come home with a catheter which I have hated every second of. I went in last Friday, 6 days post op to have it removed, but my bladder wouldn’t pee at all, so sadly the catheter had to go back in. I am due back in this Friday to try again.
I am now full of anxiety about the same thing happening again, but I have such hatred for the catheter. Has anyone else been through this?
It’s really slowing my recovery down because I can’t walk properly, I can’t sleep very well. I’m just exhausted and now have nausea so my appetite has gone!
Generally feeling a bit sorry for myself!
Hi Vla
I can certainly empathise about this one as I had a similar experience back on 2017. I still couldn’t pee a drop after my 2nd TWOC, 2 weeks after my hysterectomy. I was then prescribed with bethanechol and my catheter bag was swapped for a flip flow valve but I didn’t get any improvement.
One month after my op was taught to self catheterise and I gradually regained some natural bladder function. My progress was hampered because I started chemo-radiotherapy several weeks after my hysterectomy and once again I could no longer pee a drop.
When my chemo-radiotherapy finished I started to get some natural bladder function again. It gradually improved over the course of a year.
I still retain some urine and need to self catheterise 3 times a day. My case is very unusual and hopefully your bladder will make a full recovery.
Happy to support if you wish.
Xj
Hi Vla
I am so sorry you found yourself in that position.
I had radical hysterectomy nearly a year ago (keyhole as well) and unfortunately I know what you are going through.
2 days post op my catheter was removed and I was unable to either feel my bladder or empty it. I was immediately taught how to self catheter, and Foley’s catheter was inserted for another 7 days in hope it will sort things out…
However 
Nearly a year on and I still struggle.
I manage to empty my bladder but it takes 20mins. They damage nerves that communicate with brain and “release” muscles in order to start the flow.
My urogynae is insisting on using catheter in case of kidney damage as I need to “push” to empty, but I didn’t accept it. I’m 33 and can’t see myself using catheter for the rest of my life as I am petrified!
I regain the sensation roughly 6-7 months post op but it is not the same as pre op.
Any questions just ask
Fingers cross all will be grand on Friday!
Take care
J
Thanks for your reply. So, today was unsuccessful again. I’ve now been taught how to self catheterise which although deeply unpleasant, it’s better than have a pipe dangling out of me!!
I couldn’t pee a drop, but could feel that I needed to go.
I cannot accept that this is how it’s going to be and I keep trying to tell myself I’m only 2 weeks post-op, but surely there are other alternatives?!
Hi
Yes your body needs about a year to fully heal (that’s what I’ve been told). In some it takes longer and some have a speedy recovery.
There are options, I don’t know where u are but in UK, usually you are being referred to urogynae for tests and investigation.
Give yourself time, I know its frustrating but hopefully all will go back to normal!
Thanks for the quick reply, it’s so useful to have someone out there who gets it!
I’m near Guildford. My consultant is great but I’m not getting much from him in terms of a positive or negative outcome for what I’m going through.
Right now, I can’t even see me making it out of the house in my current situation, my confidence is at rock bottom!
Having bit of a pity party!!
Xx
I was having pity parties for long time! My hubs forced me out 2 months post op on a longer trip, as I was only walking close to the house.
I am still from time to time pitying myself. Happy I’ve no cancer but struggle with bladder still ongoing!
It is nice to have someone with similar situation as I found very little info online! Take care and try to relax 
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I just wanted to update this post for anyone who may refer back to it.
I started self catheterising and 4 weeks and 3 days post op, I started to pee unaided again. It’s ridiculous how obsessed with pee I’ve become. The peeing is still an issue and I can’t void fully and sometimes can’t pee in the morning at all so I catheterise around 3-4 times a day. Each day is getting better, very slowly. I was told to measure out my residual when I catheterise which over the past week has gone from 400ml, to now between zero (!!!) to 200ml. I’ve always had the feeling to pee which I guess is a good start, but struggle to get it out. I’m now just over 7 weeks post op so I’m praying this continues to improve over time.
For reference, I had my initial colposcopy and lletz procedure done privately so my consultant referred me to a gynecologist-oncologist specialist privately too. It was all such a whirlwind I just went a long with it but in hindsight, I wish I’d ask to go down the NHS route. I’ve had no support from specialist nurses at all and I’ve had a lot of post-op complications so I feel like I’ve constantly been on the phone to my consultant and his secretary!
Having been seen privately meant that my consultant was able to provide me with a prescription for my bladder which isn’t available to women on the nhs. This is called Tamulosin and I started taking it 3 days ago. After 3 days on it, I’ve taken myself off it. It’s one tablet a day which I would take in the morning and within an hour or 2, I would have an incredible urge to pee (without catheters), but for me it was quite uncomfortable. I think this drug is probably more suited if you don’t have much of a feeling to pee.
For now, each day I think there’s more improvement. I’m getting over a horrible infection that I got on all 5 of my incisions from the robotic surgery. My consultant said he’d never seen anything like it before (lucky me), but I got very red, rashy and itchy. Possibly a reaction to the surgical glue, but a bit weird it happened 5 weeks post surgery! A course of penicillin cleared some of it up, but I’m now on a steroid cream which seems to be helping more.
Without any nurse support, I’ve found this forum my main source of information!
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I just want to say how sorry I am to hear these stories, and the scandal (because it is, actually) of poorly handled catheterisation for women’s gynae procedures. I have not experienced anything like you have - I had cancer treatment and brachytherapy 6 months ago (catheterised for 3 days) and when they removed the catheter I couldn’t stop peeing - I was completely incontinent and wore nappies until my massive campaign of pelvic floor exercises paid off and I could hold it again. Then I was going every 1.5 hours (even all night). After 10 days I ended up with a urinary infection which led to sepsis… All good now, and I’ve trained myself to hold the pee for up to 7 hours overnight. That you ladies are having to self-catheterise months after a hysterectomy is dreadful and it sounds like some nerve damage was incurred - which should not happen.
One thing strikes me now too - that women’s catheterisation is taken very lightly, and women are not helped enough to deal with the after effect. About 20 years ago I had a deep knife cone biopsy - on the day my husband was released from hospital after a pulmonary embolism! I lost a lot of blood in the op and nearly passed out with pain when they removed the blood soaked wadding. I was, of course, catheterised. I wanted to go home with my husband, as I was scared of him being on his own. I was told it was unlikely (in fact they laughed), as I had to produce a clear pee (no blood) without the catheter in. It was pointed out that I was in a full ward of ladies, all catheterised - and some had been there several days because they were unable to pee when it was removed, so it had to be reinserted. Sound familiar? I was desperate to leave, so I asked them to take the catheter out and bring me jugs of water. Although I was scared to pee I threw that water down, jug after jug, and walked up and down the length of the ward for the next few hours. Nature took it’s course and I started to pee. When I got a clear one in my cardboard container I took it to show the ward staff. Okay, you can go home, they said….
I have to say I don’t remember anything much about the next few weeks. I was told they’d cleared all the abnormal cells (this was my third procedure) but 20 years later I was to find out that I hadn’t been spared, and it had been growing into a Stage 3 cancer.
I do hope you’re all able to get your pee problems sorted out, that your procedures have been successful, and that you remain cancer free. All the best to all of you who have posted here. X
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Hi Vla
Good to hear your update. It sounds like your bladder situation is better than mine was at your stage. I was told I could expect improvements for up to a year. If you are menopausal topical oestrogen cream might be worth considering; I’ve recently started using Ovestin which has improved the condition of my urethra (I was diagnosed with menpause related vulvo-vaginal atrophy) and possibly my waterworks in general.
It’s the first time I’ve heard of Tamulosin; wonder if I could have benefitted from that as I had no sensation for quite a while.
x
Hi Jazza
I’m 43 and had no menopause symptoms prior to this. I’m now in surgical menopause and touch wood, the hrt I’ve been put on (an estrogen gel and testosterone gel) seem to have kept any symptoms at bay.
I’m still suffering with swelling and slight discomfort in the pubic area from the lymph node removal. Researching lymphodema has become a daily habit and my latest worry! My left thigh is still very numb at the top.
I managed over 10,000 steps today (prior to the op, it was around 15k) so I’m having a good today…! X
Hi Jacks
Yes the catheterisation thing certainly seems to be a minefield. It’s unlikely my bladder will improve now; having experienced total retention for several weeks I’m so grateful to be able to pee somewhat.
I did investigate taking up a case for medical negligence against my surgeon on a no win no fee basis. However 2 law firms advised me that there is a inherent risk for nerve damage to the bladder during a radical hysterectomy and neither were prepared to take my case on.
Thankyou for your kind and considered thoughts on the matter. Much appreciated.
x
