Having endometriosis excised in November

[Pollo]

Hi all.

I just signed up here for my wife who's going into hospital in november to have her advanced endo excised, which will likely mean segmental bowel section too. The doctor told us it was the most advanced case he'd seen, small wonder she'd been in so much pain.

So I'm hoping that maybe someone here has been through this process and can give us some idea, from a sufferers perspective of how it'll likely pan out?

Doc says she'll be under the knife for 4-6hrs, and 4-5 days in hospital, followed by 2-3 weeks to properly recover.

She'll be along tomorrow with some questions, but some I know she's keen to find out about are these:
- Will there be no more pain from the condition once fully recovered from the op?
- How long is it likely to be before she'll be able to get out of bed and move around?
- Given the bowel complication, will there be special dietary requirements post op, and how long for?

I'm sure there's a million more things to know, but it's half two in the morning so it'll have to wait for another day. Many thanks in advance to anyone who can share their experiences.

BTW, If anyone's not comfortable with a bloke being in this forum just let me know and I'll bugger off.

Cheers,
Pollo's hubby.

PS - the doc we went to see was by the name of Cooper, in Sydney.

[kelly22]

hello my name is kelly and i have endometriosis and i am sometimes in alot of pain i have not long come back from the doctors last week because i havnt had any engergy and i have been feeling tired, so he sent me for blood test but havnt had the results yet. also he told me to put myself on vitimins and you not what i have been feeling really great i hope this has helped hope to hear from you soon
kelly

[dusty]

hi pollo's hubby and pollo

you are both more than welcome to post in BB, it is a journey for both of you.

i haven't got first hand experience in this major surgery as my endo was treated with a couple of laps and while i probably have endo in my bowel i don't suffer pain (endo is a fickle thing) so we are leaving it be.

i did discuss the option of this surgery with my dr and what you are saying in terms of timings, recovery etc sounds similar.

it is major surgery and you will want to be prepared for lots of rest.
sorry i can't be of more help but i just wanted to welcome you both and wish you well with the treatment of pollo's endo and hope you will be pain free very very soon.

dusty

[LJ*]

Hi Pollo & Pollo's hubby,

I had a bowel resection/excision of endo in end of May. I also had severe endo, stage 5, that was "everywhere" according to my surgeons. My surgery went for 5 1/4 hours and I spent 9 days in hospital. I had planned to have 4 weeks off work but ended up having 7. I was walking around in hospital (they make you!!!) and it is better for your recovery. By the time I came home I was able to shower myself and get myself in and out of bed ect... (very slowly!) I wasn't able to lift anything or do housework and i basically laid on the couch and went for small, slow walks around the yard.

Now, 3 months on, I feel good. I have no endo pain

I wish you all the best with your surgery and becoming pain free

[Mumszword]

Hi all.

I just signed up here for my wife who's going into hospital in november to have her advanced endo excised, which will likely mean segmental bowel section too. The doctor told us it was the most advanced case he'd seen, small wonder she'd been in so much pain.

So I'm hoping that maybe someone here has been through this process and can give us some idea, from a sufferers perspective of how it'll likely pan out?

Doc says she'll be under the knife for 4-6hrs, and 4-5 days in hospital, followed by 2-3 weeks to properly recover.

She'll be along tomorrow with some questions, but some I know she's keen to find out about are these:
- Will there be no more pain from the condition once fully recovered from the op?
- How long is it likely to be before she'll be able to get out of bed and move around?
- Given the bowel complication, will there be special dietary requirements post op, and how long for?

I'm sure there's a million more things to know, but it's half two in the morning so it'll have to wait for another day. Many thanks in advance to anyone who can share their experiences.

BTW, If anyone's not comfortable with a bloke being in this forum just let me know and I'll bugger off.

Cheers,
Pollo's hubby.

PS - the doc we went to see was by the name of Cooper, in Sydney.

Hi Pollo and Pollo's hubby and welcome to the forum. Its good to see such a caring husband who has taken the time to do some research for his wife. I wish you DW all the best with her surgery in November.

I am having the same sort of surgery in about three weeks time which likely to include bowel involvement and a chance of resection too - With me I am a bit of an unknown as the initial diagnosis was done by a different surgeon so they will have to wait and see...... I have been advised that I will be in hospital for aprox the same amount of time as you wife if all goes well or longer if there are any unexpected complications. I have been told to allow a minimum six weeks off for recovery after surgery.

You are best writing all the questions down as you think of them and then asking your surgeon and bowel surgeon as they will be able to give you good sound advice. I know I have been in the same situation... the initial consultation you are in a bit of shock and its not until you leave the specialist that you realise you have 101 questions that you did not think to ask...

There are a number of posts by forum members regarding their surgery and treatment and there are a few that have had the same surgeon as your wife. I have heard only good reports about Dr Cooper - which is comforting for your DW and you to know.

Well I wish you and your DW all the best with surgery and treatment.

If you like I can update you when I get out of hospital as to how it all went.....

Take care and best wishes...

[joel's girl]

Dear Pollo's DH and Pollo,

Sorry to hear your DW is in so much pain. I was in her shoes this time last year so I can empathise totally with the sever and constant pain. The first postiive thing I want to tell you is you have the most wonderful surgeon, in Michael Cooper. He performed the last two of my major ops and I cannot thank him enough. Not only is he a leader in his field but his patient care and general manner is second to none. For example, while I was still in recovery he phoned my DH on his mobile to let him know what was done and how things went. This then allowed my DH to explain everything in detail to me as soon as I woke. No anxious time waiting to find out things, that's just one example of his high level of care.

To answer your questions: Do not under-estimate the severity of this surgery. Your wife will be very sore for quite a while. They will get her out of bed in hospital and have her walk around as this assists with digestion etc.......however be prepared that things may appears worse before they get better.

In my case, (which I understand is not common , but just so you know) I had trouble eating for about four weeks. I was hungry but could only manage a few mouthfuls at each meal before I was in excuriating pain. I lost so much weight in a short period of time. My pain was managed with pain relief for a few weeks and to be honest, although I was in hospital for the assigned 5 nights, my recovery did take more like 5 - 7 weeks.

And the most positive thing I can pass onto you and your wife is, a few weeks after I recovered fully I fell pregnant. I am expecting the birth of our son anyday now. So yes, you guys are doing the right thing and are in the best of hands, so as much as it's hard not to worry - see this as a positive step forward.

Given that I fell pregnant so quickly I can't really answer the endo pain relief question. I was told by getting pregnant and breastfeeding for as long as I can would maximise my chances of holding the endo at bay.

I wish you and your DW the best of luck with the surgery but you don't really need it because you have COOPER !!

Cindy.

[Tahlanna]

Hi and welcome,

I had the endo in my bowel removed in July this year along with some of the bowel. The surgery was on a monday, after the op, I began a liquid diet on the wednesday night and after a small bowel movement the next morning, was allowed a 'light' diet from the thursday afternoon. I had trouble being mobile until they removed the drip on the thursday morning and once I started moving around and continued to use my bowel was allowed home the Thursday afternoon. I continued the light diet for about 4 days but the bowel movements slowed right up and I became a bit concerned but it just took a while for everything to move thru, I have read about some of the other ladies experiences and they had the complete oposite -having to run to the loo regulary. I continued slowly walking around the house for about two weeks and by the end of the third week felt pretty much back to normal.
Best of Luck with the op! We are happy to help with any other concerns you may have,

Janine

[Pollo]

Ladies, many thanks to you all for your advice and well wishes, it's greatly appreciated. Pollo's grateful to you aswell, and is trying not to think about it for the time being - I'm sure she'll pop in at some point.

Thanks,
PH

[Pollo]

Hi Ladies,

Thank you for all your kind words, I’ve been trying to get my head around all the information the Dr Cooper gave me last Tuesday. Sooo much to take in! Feeling very frightened and unsure, hence the ostrich approach for the last few days ! My DH has been my rock as always, thank you so much for being kind to him. Slowly coming to terms with everything but still have lots of questions if any one can help….

-There is a possibility that I may have Bladder involvement as well, but Dr Cooper hasn’t recommended a surgeon or specialist so far do any of you experience this procedure as well?

-Understand this can of thing differs in every patient, but my biggest fear is waking up with a mass of tubes, drains or colostomy bags attached to me. Can anyone comment on their own experience?

-I’m not a fan of western medicine had to many bad experiences with people giving me all sorts to try and treat my endometriosis. What sort of pain relief and drugs were you lovely ladies on? (Again appreciate this differs in every case).

-Did you all under go your procedures at the RPA (Royal Prince Alfred) what was the patient care like?

-Are any of you taking part in DR Cooper’s medical research program?

I’ll probably think of more things in the next few days, any support or assistance very gratefully received.

Thanks

Pollo

[joel's girl]

Pollo,

It's understandable to be so anxious but like I stated above you are in the best of hands really...........I only said to Joel the other day I wish Cooper could deliver the baby as I would know all would be OK, my OB on the other hand is a standard type of doctor, (explains nothing, you are the patient and they are the almighty doctors), you just don't get that from Cooper.....He's truly a special doctor.

To answer your questions.........Yes it can affect your bladder and it did in my case too, I also recall being told that the endo covered my urthrer (sp?) and that it was oversewn/reinforced for strength after removing the endo.

I don't recall any extra tubes (except for the catheter) just normal surgery bits and pieces. I did have a little trouble peeing but got there in the end. The nurses had to measure my wee for a few days. I think this had more to do with the extensive surgery to the urthrer though.....

As far as pain relief I had a IV drip which dispensed morphine at my discretion, a found a pessoratory very helpful (can't recall the name though) and oral tablets, panadeine etc........ the morphine was a god send for the first day or two.

I am part of Cooper's medical research and think it's a great idea. I've only had one follow up and it wasn't too helpful as I was pregnant but I suspose that's an outcome worth recording in itself.......I"m due for a call in a month or so.

Cooper did my first op at St Lukes at Potts Point and the second surgery (to accommodate the bowel surgeon) at St Georges Private Hospital at Kogarah. Sorry have no experience at RPA...........

Good luck and feel free to ask any other questions you may think of.

[Pollo]

Thank you Joel’s girl I’m so grateful to you. I feel really confident being a patient with Cooper he has been very kind to me and called the day after my initial consultation to check I was ok, having noted how shocked I was after our discussion. I have a few other questions spinning around in my head:

- Is the operation done like a laparoscopy (key hole) or is there a larger incision made? Will I be ok with stairs?

- Do you mind me asking, during your operation did they remove Endo from the bladder, bowel etc all in one go? Was your Bowel surgeon Professor Solomon?

[joel's girl]

Your very welcome pollo......

My surgery was able to be by keyhole, I had four small incisions in total, but truly they were no problem, caused me no pain at all, which has not always been the case in my other 9 surgeries.

The first surgery proved to be longer and more time consuming than Cooper had expected and although the bowel surgeron (Dr Matthew Morgan) was on stand-by he was held up in other surgeries and couldn't make it to do the bowel bit. Cooper was very apologetic but I needed to have another operation ten days later to complete the surgery. Ten days later Cooper found more endo and Morgan did his bit on the bowel then. I vaguly remember the 1st taking 4 hrs and the 2nd over 5.5hrs.............so it must have been a big job I suspose.

Before the 1st surgery Cooper told us that he suspected bowel involvment but couldn't be sure and wanted Morgan on stand-by. He said that he does this often and is right in 1 out of 4 cases but prefers to be prepared. What tests if any have you had done to confirm any bowel involvement ???

If I can make some suggestions in preparation for your surgery. Do some light cooking, soups etc and freeze them. You won't be able to stomach much more for a week or so. I also enjoyed puree vegetables that I could add gravy or similar to. If I knew what to expect I would have been more prepared as I didn't feel up to all the time-consuming cooking when I got home.....just a thought.

[YDI]

Hi Pollo
I know most people have already helped you with your questions but I thought i would let you know that i had a laparotomy (open surgery) and bowel re section 13 weeks ago now and am still recovering. I was in hospital for 10 days in total and had 3 months off work. I had 40cm of small bowel removed and my side effect was chronic diarrohea as a result of the surgery. (Before surgery I couldnt go!)
Recover was tough at first as i had an incision from my belly button down to my public line and 40 staples in total which made moving around very difficult. I had endo removed from my appendix, bladder, ovaries tubes and puch of douglas. As I had it removed from my bladder for the first 5-6 weeks there was an urger to urniate more frequently and sometimes i would go and nothing would happen and it was frrustrating but it does subside.. do you know if its small or large bowel involvement?
I was told it will take me 6-12 months to recover from my bowel surgery as it was major and the most they had removed for endo. its a tough ride but i have come a long way in 3 months.
thinking of you

[Pollo]

Hi YDI,

You poor thing it sounds like you've really had a tough road for recovery I wish you a speedy recovery, being so ill must be tough. Really hope you’re starting to feel better now. Was your operation performed by Dr Cooper as well? My diagnosis sounds a little bit similar to you, I'm not 100% certain at this stage how much bowel involvement I have, but like you going to the loo isn’t easy –very much cycle dependant.
Dr Cooper reckons I have 4/5 stage endometriosis with bowel involvement however I won’t know the extent of the bowel complication until I see Prof Solomon (Bowel specialist) in November. I have had a CT scan of the Bowel, Kidney, Bladder etc but this hasn’t really highlighted in which part of the bowel the problems lies or the severity.

Dr Cooper has suggested the removal of the endometriosis will be done through laparoscopy so hopefully this will be less invasive. My hospital stay is approximately 3-4 nights. Were you told in advance you’d be in hospital for a long period of time? I was anticipating 6-8 weeks off work but I suppose it depends on the surgery and recovery time. I don’t fancy all those staples that must have been sore

My doctor keeps reminding me I’m have major surgery which keeps freaking me out but I’m determined to stay positive and think about the ‘being well part’. I’m keen to hear more about any hints and tips you may have re post op?

Thanks for your help so far

Pollo

[Mumszword]

Hi Pollo,

Just thought I would see how your travelling of late

I hope you are well and not getting too overwhelmed by your up coming surgery. I am sure you will be fine - it sounds like you are in good hands (going on everything that has been said about your specialist )

I am due for surgery this coming Monday and will proberly be able to answer alot of your questions in the coming weeks (if you wish).... Do you have an email address or is there some way to PM you?? I am happy to help where but its totally up to you.... I don't know if you can PM me but I cant work out how to use the PM thing on this forum....

Well take care and all the best.....

Jo

[Pollo]

Hi

Well only 2 weeks to go now before my surgery, I’m slowly getting mentally prepared. Been to see the bowel specialist today and he seemed quite positive and really helped put me at ease with my questions seems like I’ll be in very capable hands. One last hospital appointment to get through, any last minute tips on recovery would be great.

Thanks again for all your help and support

Pollo 

[allyally]

HI Pollo
I had an operative lap by my gynae about 12wks ago where he removed all endometriosis but found the bowel endometriosis to extensive for him to attempt, so referred me onto bowel specialist.

I had a bowel resection approx 5 wks. It was done laparoscopy, I had 3 lap holes and one larger hole approx 7cm. I had to have a colonoscopy the day prior to see if endometriosis had invaded bowel wall. It hadn't.

I ended up have approx 15cms of bowel removed, OT took about 3 hours, had a lot of morphine post op to dull pain and the IDC is a god send first couple of days, since you are so sore. The day after resection I had PR bleeding, likely ooze from resection site, which required blood transfusion as I was symptomatic. After transfusion I felt a lot better, didn't need to go back to theatre. Physio visits you everyday to get you up in walking, feels a bit weird to begin with dragging the IV pole + IDC with you, but so much better for recovery.

Speaking of which, my dr said to take 4 weeks off work, I've taken another week, as I was still getting tired through day. Expect to feel so damn tired and lethargic the week after you are discharged, it gets better. I haven't had any problems with my bowel since, they are regular. Stick to low fibre diet until bowels get back to normal otherwise you'll spend a lot of time on toilet!

Hope this all helps, any other questions let me know, I'll be happy to answer
Good luck
Ally

[allyally]

Hi Pollo
I had an operative lap by my gynae about 12wks ago where he removed all endometriosis but found the bowel endometriosis to extensive for him to attempt, so referred me onto bowel specialist.
I had a bowel resection approx 5 wks. It was done laparoscopy, I had 3 lap holes and one larger hole approx 7cm. I had to have a colonoscopy the day prior to see if endometriosis had invaded bowel wall. It hadn't.
I ended up have approx 15cms of bowel removed, OT took about 3 hours, had a lot of morphine post op to dull pain and the IDC is a god send first couple of days, since you are so sore. The day after resection I had PR bleeding, likely ooze from resection site, which required blood transfusion as I was symptomatic. After transfusion I felt a lot better, didn't need to go back to theatre. Physio visits you everyday to get you up in walking, feels a bit weird to begin with dragging the IV pole + Catherter with you, but so much better for recovery.
Speaking of which, my dr said to take 4 weeks off work, I've taken another week, as I was still getting tired through day. Expect to feel so damn tired and lethargic the week after you are discharged, it gets better. I haven't had any problems with my bowel since, they are regular. Stick to low fibre diet until bowels get back to normal otherwise you'll spend a lot of time on toilet!
Hope this all helps, any other questions let me know, I'll be happy to answer
Good luck
Ally