Help with MRI results / treatment pathway (inc bowel endo)

[Scoutybob]

Hi all -

Please can you have a look at my MRI findings below. Any help on other people's experiences or what my surgery/treatment pathway might look like I would really appreciate it.

I'm trying to decide whether I should wait it out for NHS surgery and what that might look like or bite the bullet for private as I'm concerned about potentially leaving this 18 months to progress.

I have now been signed off from my general gynae as he's put a referral in to BSGE clinic due to what he's stated as substantial bowel involvement and extensive active DIE

Thanks so much

- Mild to moderate adenomyosis

-Both ovaries retracted medially and tethered to a shallow plaque on uterine torus (kissing ovaries)

- Involvement of distal sigmoid colon with tethering to the ovaries and posterior fundus

- Short segment serosal plaque along mesenteric margin on the distal sigmoid colon (approx 27mm)

- Bilateral tubo-ovarian endometriotic complex which form a horseshoe shape in the POD

- Right side complex extends into POD to left of midline measuring 73mm

- Left ovary numerous endometriomas measuring up to 27mm

-Small hydrosalpinx/fluid between both ovaries

- Cardinal ligament and parametrium distortion

- Mild tethering of mi sigmoid colon to uterine fundus

- Small simple cyst in right adnexa and a small pocket of fluid in between uterus and left pelvic sidewall

[MichelleFelton74]

Jeeez they done make it easy for us do they. You have to have a medical degree to understand what’s wrong with you. Mine was exactly the same. I have a large cysts that apparently looks like a ‘Christmas tree’ projection on mine. I was told early December and got my op 2 weeks tomorrow. I can’t remember anything I was told as I expecting to be told I had ovarian cancer! Long story! Is there anyone you can speak to get a phone call with dr of consultant to explain them all and to find out how long approx wait is. Good luck, I’m going to have to ask when I go in for an update on what’s going on in there!!

[Lindle]

The uterine torus or 'torus uterinus' is a ridge at the back of the cervix where the uterosacral ligaments attach; these are bands of connective tissue that go round each side of the bowel and attach to the sacrum to support the bottom of the uterus. Although not mentioned, these are likely to be affected with deep endo. 'Kissing ovaries' means that the ovaries have been pulled to the back of the uterus by adhesions and stuck to each other and to the uterus. The 'distal' colon is the part of the bowel that goes down towards the rectum and the 'sigmoid' is the last part that joins the rectum. The 'fundus' is the domed-shaped top of the uterus. The 'serosa' is the outer layer of the bowel and the 'mesentary' is a fold of tissue that joins the intestines to the pelvic wall. A 'tubo-ovarian endometriotic complex' is when the ovaries and tubes become stuck with adhesions to become one mass. A 'hydrosalpinx' is fluid in the tube. The 'POD' is the pouch of Douglas, which normally is a space between the back of the cervix and the bowel at the rectosigmoid colon but when this becomes full of endo fibrosis it is called 'obliterated'. 'Endometriomas' are blood filled cysts in the ovaries caused by endo. The 'parametrium' is an area of tissue deep between the uterus and pelvic wall.

Putting all this together you have what is called rectovaginal endo which is classed as severe. Yours is very extensive and what is referred to as a frozen pelvis, where the uterus, ovaries/tubes and bowel become stuck to each other with endo fibrosis (diseased scar tissue) and are immobile. You will have an obliterated pouch of Douglas. This will require the most skilled of surgeons to operate on in a specialist endo centre, hence being referred to one on the NHS. If looking at private it must only be in a dedicated specialist endo centre with a multidisciplinary team of the best surgeons. There are only a few such centres and you should be looking at around £10 - £15K or more.

[Scoutybob in reply to Lindle]

Thanks so much for this. Incredibly helpful. Would you have any sense of whether I might be looking at a hysterectomy?

The general gynae seemed to be saying it needed to be nhs rather than private due to having critical care units and that the bowel element of surgery could be v risky and therefore needed to have critical care there. I seem to be reading that the private BGSE units can do it though so I’m a little confused on whether private is an option?

[Lindle in reply to Scoutybob]

Whether or not a hysterectomy is required depends on individual circumstances. Fertility would be the first consideration but at the same time in such a complex case it can be very risky or considered impossible to dissect out the uterus/ovaries without significant risk to other structures and organs, especially the bowel. They will go through all of that with you.

It is important to have the surgery in a centre with critical care available - usually the large university hospitals. But be aware that many BSGE accredited centres don't have this - there are so many NHS centres now in small hospitals that really aren't set up for such complex surgery. You need a centre that is commissioned by NHS England - they have their own list of a few over 30 centres, so around half of those on the BSGE list. I'm awaiting the updated list from NHS England. It sounds like your consultant is aware of this which is refreshing.

There definitely are one or two private centres that would have the right facilities - it's not allowed to mention them but a famous one in London has which incidentally isn't on the BSGE list, but is accredited by the equivalent robotic society. I run a UK guidance group - again it's not allowed to give the link on here with it being a charity but you'll find it on my profile. You can ask for feedback on there.

[Scoutybob in reply to Lindle]

Thanks so much this is the info I’ve needed. My referral is to a University Hospital so it sounds like he’s done the right thing. My concern is the waiting list for surgery at that hospital could mean im waiting up to 18 months and what that looks like for progression of the endo in the meantime, particularly on my bowel. That’s why I was considering private options but obviously only if it was the best thing to do.

[Cheesecrackers]

Hi, I'm unable to help I'm afraid but hope it's OK to follow as I've just had MRI back with some similar findings, although I don't know all the details, I haven't yet got a copy of it myself which is seems you have, did you ask for them? It's very useful to hear about the need for critical care, I feel a little more armed with info for the next gynae appt, thank you for sharing.

[Scoutybob in reply to Cheesecrackers]

My general gynae was very honest that this was out of his remit but seemed very clued up on correct procedure for further referral which has helped. I asked in the MRI result appointment if I could have a copy of the results.

[BloomingMarvellous]

Lindle is bang on here. With such extensive endo it is super important that all your needs are considered. Whatever you do ensuring you are in the absolutely best place for care has to be the topmost priority. Understand totally that you are baulking at an 18 mth wait. Sometimes you can forward that by saying you are happy to be timetabled at anytime especially relatively short notice ,so that it gives them the max opportunity to find a slot. Granted that maybe less flexible than some surgeries because of the number of team who will necessarily involved.