Talk to me of hysterectomy

[LeBonCrubbeen]

It looks as if I’m going to have one. Tentative diagnosis of endometrial cancer, with proposed treatment being hysterectomy. Scans next week will confirm diagnosis, (or not, which would be cool). After that, the op. How will they decide how to do it (keyhole or not). How long is recovery? How will I feel? When can I exercise again? How long will I need off work?

I had a hysterectomy last June. In fact last year there was a massive thread on here as loads of us appeared to be going through the same thing.

I had keyhole/vaginal surgery for fibroids. I was in hospital for 24 hours and off work for 6 weeks. Recovery went really well. Best thing I ever did.

Hysterectomy Association is a good website with tons of advice and forums you can join (I did a daily diary thing on there]. Hystersisters is another site but American and a bit bizarre!

Hoping that your scans prove negative. What are your symptoms/reason for the operation at this point?

The old thread was called...Is There a Hysterectomy support thread.

I don't know how to link it?

Thank you. I’ll search for it.

Symptoms are post-menopausal bleeding. Nothing I would even have bothered about, except my GP was investigating why my iron levels are low.

Hi LeBon. I also had a keyhole hysterectomy for fibroids and was back at work (desk-based) after 3 weeks. It would have been a fortnight but I got tonsillitis in the second week of my recovery so my doctor signed me off for a third week. My recovery from the surgery was very straight forward and I haven't looked back since.

I agree with BG2015 that the Hysterectomy Association website is great but I would probably stay away from Histersisters as I found it a bit hysterical at times and it scared me far more than I needed to be scared.

For balance, I have a close friend who is currently recovering from an abdominal hysterectomy and she is also coping very well and not finding things as hard as she expected although, naturally, she is needing much more pain relief than I did.

With regard to longer term recovery, I'm not a great one for exercise so I can't really comment on that. But my consultant told me I could swim gently after 6 weeks but he didn't recommend diving and that the best thing I could do after the first month was to "listen to my body" and be guided by how I felt. I don't drive but was advised that if I did I would be ok to drive once I felt safe to do an emergency stop. Also I believe you should speak to your insurance company as they may have rules regarding you not being covered for a certain amount of time after surgery. Five weeks after my op we took my DSS to London and spent the day running round looking for Shaun the Sheep statues. I was mentally exhausted by the end of the day but physically I felt absolutely fine.

Hello LeBon, I had a hysterectomy with conservation of ovaries in 2017 after struggling for years with very heavy periods and fibroids. Because of the size of the fibroid my surgery had to be the full open procedure, not vaginal or keyhole.

The first couple of days were very rough and not helped by the fact that morphine makes me vomit and itch. I was home on day 3, and spent the next week or so lying on the sofa and just pottering around the house. After that I was walking longer distances and feeling stronger each day, was back driving after about 4 weeks and I'm so, so glad I had the operation.

The only ongoing consequence is that my pelvic floor is weakened as the uterus has been removed, so I have been advised to avoid things like running and high-impact aerobics classes (not that I did much of that either. ) And my trampolining days are probably over too.

Oh and definitely stay off Hystersisters - it's dreadful.

I had a laparoscopic hysterectomy last year, retained ovaries though. I was home the next day.

Pain was manageable. I had codeine for the first 5 or so days, and only stopped because they were making me constipated. The first poo was horrific, I advise lots of laxatives and lactolose.

Recovery was harder than I thought. Having had three c sections I thought it would be similar, I was totally wrong. I couldn’t walk much the first 4 weeks without feeling weak and exhausted. If I stood too long I felt my insides were going to drop out of me. Not a great feeling.

I was driving by week 4, mainly because I had to do the school run.

I stuck to the list from the hospital about what not to do, and it worked really well for me.

Good luck for your scan 💐

I might be wrong but I think if they are doing surgery due to a query of cancer they will probably want to do open abdominal surgery so they get a good look at everything and surrounding organs to outrule any spread of disease. Hopefully this won't be the case for you. C

Thanks everyone. I’m hoping for the laparoscopic approach, and my nurse specialist didn’t rule it out. I guess it may depend on what they can tell from the MRI and CT scans next week...

I’ve been reading last year’s thread, and it’s answering lots of questions.

sorry to hear your possible diagnosis. Have they already done a hysteroscopy and biopsy- and was that conclusive?

Yes, those were the other week, but weren’t conclusive: apparently my pathology is “difficult” (whatever that means). So the scans next week are intended to determine what the situation actually is.

You really need to be asking these questions from your medical team, not from a forum. Your situation may well be unique and the doctors should be answering all of them. This is a tense time, so write your questions down to remind you or you will forget something in the stress of the consultation

I agree with the PP. TBH a hysterectomy for endometrial cancer is to save your life. Being blunt. If it's caught early, it's usually 100% curable.

I'm not sure how the biopsy wasn't accurate. I think the success rate is over 97% accurate and it depends if they got a sample from the area that looks suspicious or not- and that can come down to the skill of the surgeon taking it.

It's really important to communicate with your consultant and ask lots of questions.

Lots of women have post meno bleeding but most don't have cancerous changes and if they do, it's staged, so you need to know what it is, if it is cancer.

The stage it's at will influence the type of operation. For example they will have to remove your ovaries and tubes, and they may need to do an abdominal 'wash' or see if there are any other suspicious areas. This can't be done with a vaginal op to my knowledge.

Depending on your age and how far past menopause you are, you may need advice on estrogen replacement because your body would still have some ovarian activity into old age- when they are removed, you lose that.

It's a lot to think about and you need to a) read online as there is info there and b) ask lots of questions and if necessary get 2 opinions if it's not clear.

If it's simple, straightforward operation, the normal recovery is 6 weeks with no driving, no lifting, lots of rest, no standing for hours, putting your feet up and allowing your body to heal internally.

Good luck

Well, obviously I’m talking to the medical team about the stuff as well, especially the staging and approach, but I wanted some anecdotal input as well. Call it further reading.

I disagree about Hystersisters. I'm not sure why pp says it's dreadful? The thing for me was that if you had a problem/worry/post operative symptom etc., you search and find someone else/several people has had/have had the same thing. As opposed to NHS etc sites which tend to be much more narrow as to what to expect, iyswim.

Best of luck OP.

I had a full hysterectomy at 36 (I am 64 now). Mine was due to a very large fibroid. Because of the size of my womb it had to be a full abdominal op.

My surgeon was of the opinion that most surgeons keep women in hospital far too long and go overboard on the "not able to do things".

I was in hospital 1 night. I got up the next morning, had a shower and walked a little along the hospital corridor. The surgeon said I was ok to go home - obviously he made sure I wouldn't be on my own.

I was told I should not lift anything heavy or do really heavy housework but I should be as active as possible, go for a walk every day and do light housework.

I had no pain whatsoever even immediately after the op (I do know though that I have a high pain threshold).

Two weeks after the op me and DH went to the British Grand Prix (camping) and did a fair bit of walking.

Three weeks after the op I went back to work. I did have an office job so was sitting down much of the day but did have an hour and a half train and bus journey each way

You sound nails, mydog. Thanks for the good wishes, everyone.

I had one 14 months ago to prevent womb cancer. I had keyhole surgery.

You will need a minimum of six weeks off after the op. Some people recover quite quickly, others less so. I was fortunate, and was up and about fairly quickly. I had one week when I was a total patient (and took advantage of it!),and gradually did more, light cooking, short walks etc. My mum came and stayed in week two and three, and I found I was cooking for her, rather than vice versa!

The key to recovery is to listen to your body. If you feel tired, then have a rest. It’s a good chance to binge watch favourite series on tv, or to watch a good film. I quite enjoyed that aspect of recovery!

I work,locally and have an office job so went back after six weeks. If you commute, have physical,jobs, you may be off work later.

Incidentally, I was driving after six weeks.