What is the surgery for severe endo?

[Sara2013]

I was diagnosed last week with severe endo. How long on the nhs will the wait be for the surgery and what does the surgery involve? Will i have to stay in hospital? I can't seem to get answers from my consultant. Thank you for any adivce.

[worth71]

What surgery have you been offered so far? Did they attempt to remove any endo at your lap? They didn't for mine as mine is severe, all they have suggested to me is full hysterectomy, but I'd rather try surgery to remove it first xx

[Sara2013]

Hi, i had a diagnostic lap and all they said was it's very severe and need another op to try and treat it. Just don't have any answers and feeling very lost.

[worth71]

Same as me, diagnosed and then no real info, I feel as lost as I felt before my lap to be honest, I'm worried about removal of ovaries, and removal of the endo on my bowel, it's wrong we get left like this. I have another appointment with my consultant in a few weeks, I saw him last month, and he said he will see me every 1-2 months in his endometriosis clinic, i know i have to be strong and firm and get answers at this next app. Have you got another appointment coming up? Xx

[Sara2013]

Well the doctor said the day of my surgery that i would get a follow up appointment in 2-3 weeks instead of 6 as my endo was so bad but when I called today they said they didn't know when my appt would be. So i really have no idea what is going on, what surgery I should expect or anything. It's so frustrating and upsetting. I feel like I have just been left in the lurch and nowhere to turn. Sorry, sounds like you are going through the same thing, i am just having a really bad day today.

[worth71 in reply to Sara2013]

Am I right in thinking you've only had your lap last week too? If so, it's understandable you will be having good and bad days, I'm 8 wks post lap and I only got to grips with my emotions last week to be honest, it's like you say it's the lack of support or info once diagnosed, I thought once diagnosed I would eventually be sorted but I seem to have been chucked on the hyster waiting list and I think it's purely for a cost saving purpose never mind what's right for me.

If you want to have a chat just private message xx

[Sara2013 in reply to worth71]

So do they think you need a hysterectomy? It's all so frustrating. X

[beanonorton]

hi im the same he put me on prostap injections which put me on early menopause for 6 months and up to now they have worked a treat im on my 3rd lot not sure what happens after these though x

[Chibby in reply to beanonorton]

If it works you can stay on the prostap long term as long as you take HRT along side it x

[Sunflower846]

Make sure u are seeing a specialist consultant as i had severe endo stage 4 with organs all stuck together endo everywhere but i was treated when they found it. Altho i have endo still and im having some problems but gynae's who dont specialise may not know how to get rid of severe endo. xx

[Impatient]

I agree, make sure you are seen by an endo specialist surgeon not just a regular gynaecologist surgeon. Severe endo means that the endo is deep, and probably on your other organs like bowel and bladder and ovaries etc where it can kinda burrow in to the walls of those organs. The surgery required on endo can wither be laser surgery to burn off shallow endo lesions or patches which can kill them off, or if the endo is too deep then laser just takes the outer layer off and doesn't touch the stuff below which is still active and will still grow and cause trouble. This required excision surgery or cutting out of the lesions, and is not always safe to do and not always possible either.

Depending on where that deeper endo is could mean major surgery on bladder or bowel or ureters, or intestines or colon or vagina or ovaries. just depends what it is growing on or in.

If the bladder then ideally you would need the help of a uro endo specialist surgeon, if bowel then a colorectal surgeon.

It may not be pssible to get all these specialists on hand at the same time for the one op.

So they may decide to operate on you in stages or over several ops.

Or it may be that soe if removed and some is too tricky to remove and you are left with some lesions still active and untouched.

You could have hundreds of lesions and most of them are tiny pin prick sizes or some could be much larger and more visible. Eitherway the best chances of them being seen and operated on are if you are actually on your period when you have a surgery or just recently finished a period. What you don't want to be is shut down by BC pills or GnRH drugs when you have the bigger op as this means that most of the smaller lesions which can be just as painful, cannot be spotted by the surgeons as they are not active and bleeding or irritated at the time of the op and they are missed from being tackeled,

It is tempting to go on the drugs that stop your periods while you wait for surgery, because the pain is a lot to go through, but if you can survive on pain meds alone and not take drugs to stop your periods in the meantime then your chances of a successful operation are so much higher.

Again depending on what the op entails, you might expect to have another laparoscopy as you had before, but the surgeon regardless of how skilled he is, might prefer to give you a laparotomy (big hole) op so they can really explore your gynae region and get at those awkward hidden nooks and crannies where endo lesions can grow and cause trouble. Usually this is in the POD or pouch of douglas (the space behind the vagina and womb and in front of the bowel.

In the big hole op it will either be a gash across your bikini line or from your belly button down to your bikini line. Either way recovery from that op is a lot longer than for a lap op.

Inside the recovery time is about the same probably 10 weeks or so before you can start lifting weighty things like shopping bags and small toddlers, but the tummy muscles can take several months to mesh back together strong enough to be pain free when exerting strain on them. I've had both ops, the big hole tummy muscles took about 5-6 months before I could pick up a small child in weight, to give you some idea of time scales. I am absolutely fine in the tummy muscles department now two years on, and the scar is barely noticeable.

I still have endo in the bladder and in the bowel, but the op made a huge difference generally speaking to the endo pain levels. I had excision on some lesions and a lot of laser work done (which feels like extreme internal sunburn sting afterwards which turns itchy like healing sunburn does but for a lot longer because you can't put after sun on it.) Rather annoying but didn't need pain relief after a couple of weeks.

Lap op I was just an overnight stayer, but some ladies are out the same day (but don't expect to be recovered for at least 3 weeks more likely couple of months).

Big hole was 3 days stay in hosp for me, some need a bit longer, some less, depends on what was done, what your risk factors are, how soon your bladder and bowel get working again, whether you have a catheter installed and other factors like blood pressure etc.

But definitely not something you get over quickly. 2 months off work minimum, may be longer depending on your job. At 8 weeks post op I was just about able to drive, but it still hurt a lot looking over my shoulder to reverse etc, pulling on my wound ouch.

Bending down and standing up again not easy at all, infact most things you do that you need tummy muscles for including going to the loo are very uncomfy and very tricky to master after the big hole op, so don't expect a miracle speedy recovery after 7 layers of muscle have been cut through. Having said that, given time, you will recover back to the strength you had before the op.

As for waiting lists, it entirely depends on operating room waiting lists for all ops, not just gynae ones, and also the availability of the specialist surgeons at that right time, so you might be lucky and it's within a couple of months, or unlucky in your area and end up waiting many more months.

This is the website for the list of all the UK accreddited endo centres which do have the specialist edo surgeons on staff for severe endo cases.

You might want to try and get referred to one of them if one is near you. Or see how the 1st op goes and how much can be done in that allocated time frame in theatre, and if more specialist work needs doing later then refer to one of the endo centres at a later date.

bsge.org.uk/ec-BSGE-accredi...

[worth71 in reply to Impatient]

Impatient - my consultant is on this list, he has told me where my endo is and that it is severe, he didn't discuss any other treatment/surgery options other than the hysterectomy, he said pop me on hrt if I needed it, I asked about the hrt/endo grow back he said that it was a myth and completely un true! I think he shouldve said its unproven maybe. I expected so much more from him when I knew he was on this list of specialists, i just felt i couldnt question him as he made me feel as if I had no clue what I was talking about and how dare I question his knowledge. I've already had my pre op on Tuesday, the nurse was brilliant and told me to tell him I'm not sure and to ask for what I want, I told her I feel I'm being pushed into a hysterectomy becasue of my age and the fact ive had children, id gladly have my womb taken tomorrow but im not happy about the ovaries and bowel side, and he never said how he would remove the endo, i also feel this is the cheapest option for the nhs. I don't have a date for it yet but am seeing this consultant every 1-2 months in his endo clinic xx

[Sara2013]

Thank you everyone for your replies, it makes me feel a little less alone in this. If i find a specialist, would i need to see him privately or just ask to be put on his waiting list?

Thanks again, x

[Romeo123 in reply to Sara2013]

Hi Sara, sorry to hear your situation it sounds very similar to mine, I had suspected endometriosis and had a lap in January, I was expecting them to do what what was needed and that be that but unfortunately they said it was too severe and would require another operation, the consultant told me all this literally when I'd just come round so come the next day it was a complete blur. I was beside myself as we were TTC, I had to wait 6 weeks to get a follow up appointment and was told I would require open surgery to sort it, they said the waiting list was a max of 18 weeks but in leeds where I was the waiting list was been pushed to the limit, to cut along story short because we are TTC and time isn't on our side we decided to go private. The operation took 3 hours, involved work on my bowel, bladder, a lot of unsticking and removed of cysts from my ovaries. I was in hospital for 5 nights, however I don't think I would have been in as long on the NHS but my consultant was renowned for been cautious. I'm now 3 weeks after the op and I'm feeling a lot better, I still can't drive or run a marathon but I'm on the mend, I would say depending on what you do you would require 4 weeks off work.

I'm not sure about your situation but if you are TTC be sure you a consultant that understands endometriosis and fertility.

[Impatient in reply to Sara2013]

you ask your GP to refer you to the specialist on the NHS for a consultation, they may take you on as an NHS patient or they might only now do Private surgery , it varies, but the first enquiry should be through the NHS if at all possible after all you have paid in advance your national insurance contributions for free health care.

[Edsmom]

Hi, I'm in the same situation as you where I had a lap to diagnose endo last Sept. they found I have stage 4 severe endo with extensive coverage on my ureters, bowel and pouch of Douglas. Some of this was laser treated during the diagnostic lap.

I was then put on Zoladex for 6 months. I have waited 23 weeks for next op which is on 21 May, my periods returned in April.

I'm booked in to have ablation and excision of endo, I'm on the day surgery list but not sure if I will be staying in overnight?

I am anxious about my op as I have so many unanswered questions. I've seen 2 different consultants at my hospital who have said there's only one surgeon who can do my op, hence the long wait!

In previous discussions with another consultant they've mentioned operating on ureters and possibly bowel, which could mean a stoma. I'm hoping to discuss this with the surgeon on the day of op as I haven't met him yet!

I hope you get seen soon, you're not alone. Xx

[Sara2013]

Thanks for all the messages. X

[Juleyanne]

As a sufferer of extensive endo and adhesions including numerous surgeries ie lap and hysteroscopy (tubes removed in separate ops) then later found tube stump stuck to bowel and other side ovary stuck to bowel and endo had moved into stomach) I can wholeheartedly sympathise with your plight. I am peri menopausal but still getting right sided pinching and nerve pain together with bowel problems, hip pain and low back pain which is with me all the time now but some fluctuation in intensity plus fatigue. I was told after lap and hysteroscopy that it was all removed although due to proximity to bowel 'as much was removed as was safe to do so'.

I later found out after an endo support meeting talk with top endo adhesion gyne that there is indeed much confusion as to whether hysterectomy (once child bearing years over) is likely to be effective. It is apparently not always the answer and only stands a chance of working for some if absolutely every single bit of endo and adhesions are removed and the only way to approach it is through radical 'aggressive' surgery (which sounds a bit scarey!) and often bowel ressection if bowel is affected which is often the case. One thing that the endo adhesion consultant mentioned which really stayed with me is that if hysterectomy is performed it is best to remove ovaries as there is a much higher risk of cancer in women with endometriosis! So removing ovaries is best practice, although of course this is an emotional and difficult choice for a woman but as there is a link between the two, keeping ovaries is a gamble probably not worth taking longterm.

[MoonlightB]

Hello I have stage 4 endo and I had to have 2 laproscopies within the space of about six months. It actually took them a year to give me my first operation. The surgery itself isn't so bad and you are usually out of hospital the day after. Under general anesthetic I had 4 incisions, on in my belly button and three around the bottom of my tummy. They fill you full of gas and insert a camera so they can see what they are doing/ what the problem is. They then do any procedures that they need to do. If you are older or have children they will probably recommend a hysterectomy instead. I am 31 and they were adamant about preserving my fertility.