Hi Victoria, I hope all is well with you. Have you had your first vault smear now?
I just thought I’d update you on my current situation. Following my hysteroscopy and Lletz, the results confirmed CGIN which was found in the initial biopsy and they also found CIN3 this time. I did have clear margins but he said with CGIN he couldn’t guarantee there wasn’t something going on further up so he is still recommending a hysterectomy. It’s looking like my operation will be mid November.
Can I ask you about recovery? How long before you were driving? Back on the school run etc? x
Thanks so much. x
Hi Lynnie,
That is good news - sounds like he probably got it all but there’s no guarantees of course. So my op was Feb 2 - the first two weeks I didn’t move around too much from the sofa at all. By week 4 I was feeling much stronger and at 6 weeks was cleared to get back to work. I work at home anyway and restarted work at around 4/5 weeks mark but sitting at my desk for long periods gave me stomach and backache so I had to keep moving around; I was also quite tired still. I was driving from 6 weeks but didn’t need to much as we were in lockdown still with kids at home. My surgeon advised no sex until 9 weeks but I waited for longer than that. I can honestly say that by 12 weeks I was feeling back to my old self. Niggles and backaches continued for a few months but they have gone now. I’m almost back in my old jeans but the swollen belly did last a month or so. It depends if you have an abdominal cut or laparoscopic (which I had) that seems an easier recovery.
Do you have help at home? It helps to prepare a load of frozen meals (lasagne, shepherd’s pie etc) so you can still have something homemade to give the kids. mine survived on Daddy’s cuisine of nuggets and chips! After 2/3 weeks I could make meals for them just sitting on a stool and no lifting of anything - that’s probably the biggest thing to remember.
I have had my first vault smear - results due on Wednesday - fingers crossed it’s clear!
xx
1 Like
Thank you Victoria. I hope you get good news on Wednesday and this can all be put behind you.
That’s really helpful for managing my expectations. I’m nervous but now the decision is made I just want to get through it and out the other side so I can start the recovery. My husband is a solicitor and he’s self employed (which is never ideal for taking time off) we went through his diary last night and mid November seems the most feasible time in terms of his court diary. There are a few cases he has to cover at the end of November but hopefully friends can help out with school runs. I’m hoping since it will be 6 weeks before Christmas I’ll be able to enjoy the time with the family. The consultant did say I could wait until after Christmas but I think I would rather get on with it now.
Can I ask what to expect when you immediately wake up? Is it frightening? Did you have an oxygen mask on etc? What were your pain levels like? My operation will be laparoscopic too. How long were you in hospital? Did you need help going to the bathroom/showering when your were home?
Sorry for all the questions. Thanks again for your help. It’s a bizarre feeling because most people when they go through major surgery have some symptoms/pain they’ve had to endure but as I currently feel fine it’s quite a daunting prospect.
I chose to wait until after Xmas as there wasn’t an immediate need for the op and I’m glad I did as I enjoyed the time off and my diagnosis was much closer to Dec 25 so I didn’t want to be really bad on that day. However, if the op would have been like you in Nov and given your circumstances with holidays etc, I think before Xmas option makes sense for you. But obviously your choice.
In terms of immediate after the op, I woke shivering and very cold but from past ops I’ve had (wisdom teeth, D&C) that seems to be my body’s reaction to the anaesthetic. In recovery they put a hot blanket on me - which is like a giant hairdryer that was just lovely. No pain at all but I heard the doctors talking about my blood loss which was more than expected - so that was a bit daunting but no transfusion needed although I was prescribed iron tablets and had blood test done before they would discharge me. I was in two nights mainly due to the blood loss but I think they call it “day surgery” so usually one night. I had really good care and pain relief. I had an oxygen mask on all the first evening and the next morning but was then weaned off it. in the afternoon they took out the catheter and I had some help after that by the nurse when I needed the loo. the next day, I was seen by a physio who teaches you how to roll off the bed so you dont hurt your belly and I was discharged. nurse carried my bag to the carpark when my husband and kids were waiting. Car jolting was a bit nasty but still no real pain, just soreness (although I did have a full dose of pain meds before I left the hospital).
I took every pain relief offered in hospital not because I was in pain but because I wanted to keep ahead of any pain and it seemed to have worked. Same when I got home - took paracetamol and ibuprofen but got off the codeine they gave me ASAP as it makes you so groggy it’s horrible. I didn’t shower for a few days but then had my husband wait in the room or nearby in case I fell or anything, which I didn’t, I couldn’t really wash my hair for another few days but no issues there really. I only really needed help up the stairs from the car home from the hospital but then shuffled my way off the sofa and to the loo carefully for the first week or so. It really is manageable. xx hope this helps you. x
2 Likes
Thanks Victoria, that’s so helpful. I am becoming quite anxious as reality is setting in. I’m worried about the procedure itself but also about post op problems. It’s more if I’ll get the right care if I have to go to my local hospital in an emergency scenario (blood clot, sepsis, haemorrhage). After losing my dad last year after a secondary infection he picked up in hospital I don’t have a lot of faith in their care. Plus, Winter/covid/flu season and the pressure the hospital will be under anyway.
Hopefully I’ll escape these risks but it’s something that is in my mind as I do tend to worry about every scenario possible. I was particularly concerned about a haemorrhage as I’ve had two after childbirth. I was wondering if it was something I was more predisposed to but my consultant said their is no correlation between a post partum haemorrhage and a surgical one so my risk is no greater than anyone else’s.
Anyway, enough about my overactive brain. I’m going to try and use the next 5 weeks for getting healthy and hopefully lose a few pounds……that will help with the recovery! (She says with an after eight in her hand)!
Bless you - I was just the same and had no-one really to speak to and couldn’t have anyone with me in hospital. The walk to the operating theatre was horrible and I was shaking but the anaesthetist and all the people there were so lovely it really helped. Once I woke up, I was so relieved the worst was over. I’m always here if you have more questions or just want to vent xxxx
1 Like
Hi Ladies
Really helpful to read your stories. I had my lletz results as CIN3 and CGIN but no official plan yet as I need to wait for their MDT.
Im 41 and complete family so looks like hysterectomy is next on my journey. Reading through Victoria’s experience how manageable it is is quite reassuring. However I am on the brilliant NHS but they do definitely take a conservative approach. Please would you mind sharing Which private insurances do you have as self employed? (I am self employed too) I just want this over and done with the endless wait for results… thank you
1 Like
Hi apple pie, I had the same results as you. A hysterectomy does seem to be the common path for CGIN. I hope you’re doing okay. I know how anxious this process can make you. I am with Bupa healthcare although my husband is with Aviva and he much prefers them. You may find it difficult to get cover for a preexisting condition though or have to pay a premium.
1 Like
Thank you for the rely Lynnie - I am okay thank you 
it indeed may be hard to get cover although I did get quote from Bupa before this so fingers crossed:pray:
Best wishes for your procedure in Nov - keep us posted… it is great to have this support from ladies going through the same “roadmap”
Hi. I’m with Bupa too but had been for a few years before this all happened so thankfully I was fully covered.
1 Like
Thank you ladies - just spoke to Bupa and you are right, mine is now classed as pre existing condition so cannot be covered - still grateful for NHS.
1 Like
I hope you find out the next steps soon. Can I ask when you had your colposcopy and if you’ve had abnormal smears before? x
1 Like
Hi - I had cin1 in 2018 as first time abnormal cells.
Then when I had routine smear this Aug 2021, I found out by text that I was booked for colposcopy two weeks later followed by lletz under GA mid Sept due to High grade CIN3. Lletz results then show CGIN too so waiting to hear back from the experts what the next steps are…
1 Like
Your waiting times have been good. I had my first abnormal smear in May this year. My results didn’t come back until 6 weeks later and because they only showed mild/low grade changes my wait for a colposcopy appointment was 10 weeks (supposed to be 8). My anxiety was getting the better of me so I used my healthcare. I live in Scotland. I hope you hear soon, it will be interesting to hear what they recommend. Some people get offered a second lletz or monitoring depending on the grade and if they have clear margins. I guess age and personal circumstances will play a part too.
Yes the wait times have been super fast hence I was actually worried I had cc! It’s weird how we think of the worst case so we do need to intentionally capture the negative thoughts and be grateful that we are still in stage0… 3yrs ago it took about 8wks for biopsy results from colposcopy to come through - so we do need to trust we are in good hands or else our brains will explode with worries😅 we got this🌈
1 Like
Just got my negative results for hpv and any abnormal cells from first vault smear!!! Next smear in a years time and then I will be fully discharged. This is the best news ever. It all seems worth it now. You’ve definitely got this ladies. Xx
7 Likes
Congratulations Victoria🎉
Congratulations Victoria. I am so happy for you. xx
Me again! Lol. Can I ask how long you think you might have had HPV? I’m so happy you’ve cleared it. Do you think it’s the hysterectomy or did you do lifestyle changes. I’m desperately trying to clear mine but I’ve likely had it for decades and the consultant hasn’t said the hysterectomy will clear it. x
Hi! I’m pretty sure I have had it since I was 22 as I had an abnormal smear once then and was monitored every six months for 2 years but then was clear after. It only emerged again late last year. I think it depends on the strain but once you have it, you’re stuck with it. My surgeon said at my six weeks check that the hysterectomy will probably emanate it but you can re-catch HPV. The real worry for me was VAIN - basically CIN but in the vahina also caused by HPV. but the test showed it was clear so I’m very relieved. if not present in a year’s time, I will be officially discharged and clear of it. 
2 Likes
