Hello lovely ladies ... I am Jo and have been quietly hovering in the background since my diagnosis in late March 2020. I had my hysterectomy with salpingo oopherectomy on 7 April. I had brachytherapy (2 sessions each week for 2 weeks). I completed my brachy about 2 weeks ago.
For the last couple of days I have been getting twinges at the top of my vault which I am a bit concerned about, this is coupled with a pain that feels like a strained muscle where my hysterectomy scar is. Has anyone else had these kinds of twinges? They are not pains as such but it’s like an involuntary pelvic floor exercise! I have been dilating ever other day on size 3 dilator - this is something else I am trying to get my head around!
I am thinking of calling my Brachy nurse tomorrow as she has been so amazing to me throughout my radiotherapy and go through it with her but I don’t want to bother her if it’s something silly.
All of my surgery and Radiotherapy has been during the Covid lockdown so I have not had much of a chance to sit and chat with people ... I don’t feel like I should bother anyone, especially as they are all so hard pushed at present. Any advice would be gratefully received and I am thankful for this group! Apologies for wittering on too!
Jo
Hi Squishy Jo,
I had all kinds of twinges after just having a hysterectomy! The twinges were similar to the pains I had when I had shingles, so I guessed it was nerve endings knitting together. It gradually faded away. As you have had brachetherapy as well, I think I would be inclined to ring your CNS and check. I'm sure they won't mind. xxxxx
Hi and welcome
I only had the LAVH-BSO (Jan 2020) and not brachy but I did have the 'twinges' that feel like a strained muscle and I think that would be quite normal as you are only a couple of months post-op. I read somewhere that the internal healing process involves the scarring renewing itself every 6 weeks or so and getting stronger each time and I often felt the 'pulling' sensation at around those intervals. Also, I've always felt a little more discomfort at one of the entry scars where I had a drain in for 24 hours.
As you've had brachy and are feeling some strange sensations in the vault area it's probably best to contact your CNS just to check all is well. Can you email her if she is likely to be busy during the day?
All the best and good luck with your continued healing process.
xx
Thank you ever so much for taking the time to respond to me ... I cannot tell you how good it feels to actually speak with people who have gone through this as trying to talk to friends is not easy.
I have left a call back request for my nurse so will see what she says ... I know I shouldn’t feel like it but I don’t like to bother anyone in case I am just over thinking things !
J x
Hi squishy jo my experience finished 3 sessions brachytherapy on 25th feb was fine till now starting to get aches pains bit sore hip and lower back pain will defo mention it next telephone check up this be the second since good to speak to your nurse as it's just couple weeks after your last session your doin great on size 3 I have worked upto size 4 now yes defo head round that take care xx
Hi SquishyJo,
I was back at the hospital 4 days after being released!!! It was a Saturday, and I had a couple of days with strange bladder movements, then one night up every two hours to only pass a thimbleful! The end came when I stood up to get out of the bath and urine flowed out of me with no control.I rang the hospital, who saw me straight away, checked me over and said it was all settling down, no infection. I felt much better just to know there was nothing wrong!! xxxx
Thanks ladies ... I spoke to my nurse and she said that it is most likely to be nerve endings re-firing, or scarring. She said that if I continue to be worried that I should tell my Consultant at my first 3 month review - something I am already nervous for! She also advised me to keep dilating regularly ... am guessing that this is a lifelong thing now?!
J x
Hello Jo,
I hope you are coping. Briefly I was diagnosed with Grade 2 Stage 1B in August last year. I have a TAH in September followed by three short sessions of Brachytherapy in November. I too sometimes get a sharp stabbing pain in my vault and also have what feels like a straining in my right lower abdomen (feels like apendicitis), but I am sure that is an adhesion. Sadly because of mistakes with which hospital follow ups were to be at I have only managed one F/U appt in the flesh. I had a telephone f/up scheduled for next week but because I have issues with a bleeding rectum and now have a barrage of appointments and procedures over the next week or two this has been put back again. All I can say is speak with your CNS if you can and try not to overthink things. I know its difficult... XxX
Hey Zigoin123 ... thank you for taking the time to reply to
me. I too have a strain like feeling in my lower abdomen near my hysterectomy scar, not sore to the touch but when I get up or walk around it almost pulls ... will ask my Consultant when I speak with them too.
it has made so much difference to me to be able to speak to you lovely ladies, makes me feel like I am not on my own, that other people have gone through and are going through this ... definitely feels that I am very much on my own sometimes. Guessing this has not been helped by the fact that I have gone through everything without being able to have support appointments, at my radiotherapy sessions or anything. Just bad timing but not even being able to see my family has been painful too!
sounds like you are going through a rough time too hun with mistakes that have been made ... so sorry to hear this xx Sendinf lots of love xx
J x
I had brachytherapy at vaginal vault in January, 4 sessions over 2 weeks.I was given dilators and told to work up through sizes gradually. Told expect discharge and maybe light bleeding but none to date. On first check up at 3 months was only on size 1, told to expect some discharge but none to date. Had internal exam at 3 month check in March and told it looked fine. Now worked up to size 2 dilator every couple of days. No discharge or bleeding but feels sore at vagina entrance on insertion of dilator so not ready for size 3 yet. Was due for 6 month check on Monday but consultant rang today and after talking to me said I could wait till September when would have CT scan. Told me to ring his secretary if any problems and wouks see me urgently. My main issues have been constipation, sore back and having to pee urgently. Constipation issue since hysterectomy TBH. Bladder I am managing to train slowly to have more control but do have to get up in night.
I had my brachytherapy in February 2019 and have had abdominal pain and tenderness ever since. I had a CT scan in April 2019 and a further scan in April 2020. Nothing heard from the hospital since then so I assume everything is ok. All I’ve been told is the scarring inside the vault will take a long time to heal. I was having blood on the tip of the dialator almost every time. One doctor told me to use it every day but I find that too much so it’s every other day. Another doctor told me the first year is the worst. Considering I had no symptoms before the cancer diagnosis I’ve found the treatment much worse. I almost wish I’d never had the brachytherapy. But we all have to get used to a new normal.
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