So 12 weeks post sepsis I’m now being taken seriously!

[Heloo85]

So, the last I heard is they was testing me for cancer, and referring me to MDT! After 11 weeks of being fobbed off! Seeing a gynea to be told I probably just had the clap.. that’s why I almost died from sepsis! Point blank refused antibiotics and told I didn’t have a mass... I got a phone call from my consultants secretary booking me in for an appointment of Friday morning, the day after my MDT, before they’ve even discussed me.. So now I’m assuming my tumour markers showed cancer! Pissed off doesn’t even come close!

[Spireite]

The CA-125 test can go up because of endo, adeno, fibroids, ovarian cysts. I don't have cancer, I have adeno, chocolate cysts, stage 4 endo, my CA-125 is raised.

If I've read your post right, your consultant is ringing you the day after the MDT are discussing your case? If so, sounds like you'll be getting told what they've said in the discussion, whilst it is fresh in his mind.

[Heloo85 in reply to Spireite]

I’ve to go in face to face the day after the MDT! I have stage 4 endo, I don’t know what bloods I’ve had but there’s not just CA125, there’s about 3 tumour markers for ovarian masses!

I have Endo back on MRI, a couple of 1cm nodules, which they are aware of, I also have a fibroid, so I’m hoping they haven’t used the CA125 to sh*t me up for nothing!

Xx

[Spireite in reply to Heloo85]

I've had face to face appointments since the back end of last year, and I have another next week. Just my consultant recognising that we were not going to be able to discuss anything fully over the phone, to the point where I was happy to commit to surgery. Try not to worry.

[Heloo85 in reply to Spireite]

Can I ask, where about are you in your Endo path? When was you diagnosed, is this your first, second, third surgery? I know you say stage 4, is it deep infiltrating, do you have any other organ involvement, bladder, bowel? Are you under BSGE?

The reason I’m concerned is because I’m complex, hence the reason I’ve been under pointless 3 monthly consultations for 4 years..... My consultant fobbed me off for 12 weeks after discharge from hospital after sepsis! I was due a rescan at post 6-8 weeks discharge! He had set one up, for 6 weeks time at that point, and booked me in for a telephone consultation with the results on 10th of March! But... I by-passed him, went to GAU, had my scan there, they said cancer markers, MDT, now, although my actual follow up was booked in for 10th of March, pre-GAU, it’s now actually tomorrow.

I’ve asked you those questions because im trying to work out if I have in anyway been handled correctly! Pre-lockdown I very much almost got him to agree to another lap, after he swore my Endo had not emerged! Then lockdown I was shoved on to telephone consultation where I remained until hospitalisation and even then had to fight to be able to go in face to face, to just be fobbed off

Xx

[Spireite in reply to Heloo85]

First lap, only put on the list mid Dec, done third week of Jan, NHS but at a private hospital. Cancer marker had increased yet further in Dec. His words were, I'm not concerned, but I also don't want to leave it ' Already diagnosed with endometrioma and 'fibroids' from USS, so the lap was originally sold as removal of right ovary (which is what he wasn't happy about leaving) and tackle the endo.

Lap ended up purely diagnostic because it is such a mess in there. His words 'You have endometriosis, BIG time' and 'That requires a whole different level of surgery to remove it'. He's saving the gory details for next week, but I've already skim read my notes before I left hospital, and I've read the letter to my GP. The 'fibroids' don't get a mention, but I have now been diagnosed with adeno instead. My ovaries are stuck to each other, and well and truly welded to the back of my uterus, my left ovary is stuck to my rectum which is pulled up behind my uterus. No mention of my bladder being involved in the GP letter, and I didn't get past the other stuff in my notes once I'd got the gist of what we'd be discussing at follow up. I'm hoping the mention of ureterolysis on the discharge paperwork was just standard procedure stuff, and I haven't got this damn stuff trying to silently kill off a kidney. I had a hemangioma appear on my liver on the scan that got me the referral to this guy, and I'll be asking for clarification that it is just that, and not endo as well.

I'm 49, there is up to 35 years of damage in there. My GP has usually responded with a prescription for iron tablets, and the first gynae (not BGSE) I saw over this was only when I'd been bloated for a month and my CA-125 over the line where you become an automatic two-week referral. Scan was done by a trainee. Consultant was pretty useless and arrogant, didn't take a proper history (she thinks I've had only two pregnancies, because she failed to ask about 'any other pregnancies', that rang immediate alarm bells) her internal was horrendous, bruising my pudendal nerve in the process (felt like I was sat on a tennis ball for a week!). I was diagnosed with fibroids and 'a simple cyst' albeit a 10cm one. One of the drugs she suggested (Esmya) was inbetween temporary and final ban (my current consultant has expressed his shock she offered it, and his relief I didn't try it), she was willing to refer me for UAE (which I'm not eligible for) or do a total hysterectomy because I was nearly at menopause age and 'taking my ovaries would prevent me getting ovarian cancer in the future'. Made an abdominal hysterectomy sound like a six week recovery and, with HRT, I'd think it was the best decision I'd ever made. I opted to watch and wait (because I didn't feel I could trust her) and she wasn't bothered about keeping an eye on the cyst, so she discharged me. No mention of endo being a possibility, no mention of a lap. Good riddance, can you imagine her trying to tackle a hysterectomy on me!

Finally went back to the GP after a few more flares, told them what I thought of the previous gynae, and asked for a referral to a larger hospital, possibly for UAE. GP rescanned me, cyst was diagnosed as endometrioma, 'fibroids' still there but smaller, and I thought I'd just been referred to a standard gynae. I did a little digging, he's BGSE. So far he's been good. Saw him just before the first lockdown, had telephone consult over the summer (once scan had reopened) and everything face to face since. Only thing that has driven me nuts is the hospital's ability to lose my blood forms, and ringing to book me for a scan with less than 24 hours notice, offering me only one appointment option, but telling me they'll have to postpone my consultant if I don't take it. I lost five weeks alone to a missing blood form, but the consultant pulled that back by a week once he'd got my results. Except for the speed and efficiency with which they got my lap booked in and done, the rest has been head-banging. I'll see what next week brings, but it suspect I'm looking at induced menopause in the short-term, and a total hysterectomy. Big question will be if I've got to have a stoma as part of that.

I've been here before with an ENT condition, so rare it is one in a million stuff. GP pretty useless, only got a referral because they were baffled. Consultant got it straight away, but then let her registrar loose on me, who repeated the nasal endoscope because he'd never seem an real case of it, not because I needed it (so excited he forgot to use anaesthetic before he did it...), MRI to rule out the huge list of nasties that were possible causes, referral on to Neuro who was honest enough to admit I was only the second he'd seen with it, and that treating it with drugs would be trial and error. I'd done my research, he was happy to listen, and I got a referral through for my eventual cure pretty quickly after that, though I had to try (and fail to get any benefit from) some of his drug suggestions to qualify to be part of the trial. Sounds pretty straightforward, but it involved many phone calls chasing up appointments, particularly for tests, and taking two drugs that made my life difficult and miserable (whilst doing screw all).

I've learned to play the game, there appears to be no such things as straightforward, and nothing is quick, particularly with Covid. A friend has just had to coax her consultant into action for a gallbladder op that got cancelled on the day just before 1st lockdown. Not heard a thing since, despite her leaving a message on his secretary's answer phone. Told her to persist, and take it up with the GP practice referrals person if still nothing. Telephone consult, scan and pre-op all now booked in.

A long exhausting battle, always. Though given the chats I have with people in the US, with the ENT problem, I'll take that over what they've got to navigate, any day.

[Heloo85 in reply to Spireite]

You sound like me, 5 years ago, but you’re slightly older than I am! I too had my first lap at a private and it was open and shut, referral to BSGE! Funny enough, I also had an hamangioma in my liver on an ultrasound, that has either disappeared or been ignored! I questioned whether that was Endo! I had bilateral ovary, fallopian, ligaments, bladder, bowel involvement! I had a 6 hour surgery just over 4 years ago! I hope they sort you out, and you don’t end up like me, just going to follow up, after follow up, after follow up for years! They have denied, up until now that my endometriosis had returned.. I have no idea of the pathology of my Endo, but it must be severe if I’ve been on follow up for 4 years! I think, seeing as my pain kicked up again relatively fast after my last excision, that it returned fairly quick, and I’ve been living with it again, for years.

It is back on scans! I have a few nodules around 1 cm on MRI they suspect is Endo! But they ain’t sure what this ovarian mass is!

If you’re done having children, I would say, go hysterectomy! It may not cure you, but if your Endo is anywhere near as aggressive as mine (which it sounds like) excision won’t do much either! I am dying for one! I want it all out!

Onto the CA125, anything can increase it! Endo itself, infection, period, cancer, but it is just a basic marker.... There are specific cancer tests that do narrow down the likehood of cancer! And I hope they’ve had the common sense to use them! I will ultimately find out tomorrow!

But hopefully, you get sorted ASAP! The NHS atm is hard work! Xx

[Heloo85 in reply to Spireite]

What I meant is I was diagnosed with Stage 4 DIE sub Aggressive Endo 5 years ago! I have subsequently been under this consultant for 4+ years, on 3 monthly consultations, and although just fobbed me off for 12 weeks, he knows me and has all of my records and test results from now to back at original diagnosis!

So, the fact he’s no longer fobbing me off and in fact rushing me in is actually causing me great concern.. Because believe me, it’s very much unlike him when it comes to me! 🤣!

But hopefully, fingers crossed, it is just Endo! But I have been super poorly and pained recently! Since almost dying from sepsis, I just can’t recover! I’ve had rashes all over, a cold sore that took 2 months to heal, and my head/face is constantly burning, hot flush but without the sweat burning, but temp normal on thermometer!

I’ve only 2 days to discover my fate! Fingers crossed! Xx

[Moon_maiden]

I’ll keep fingers crossed it isn’t cancer. Let us know how you get on. 🙂

[77yellow]

So sorry that you have had to battle to be heard. Tumour marker bloods can be elevated in benign conditions and are not totally reliable for a cancer diagnosis. Fingers crossed that the MDT and appointment give you some much needed answers and hoping it's not cancer x