Has anyone been in this position? So, 4 years ago I had major surgery! Very little was explained really, other than I had Fallopian tube removed! I was never discharged from under BSGE and for 4 years have been under 3 monthly consultations. They did almost fall to 6 monthly last year once I’d been fobbed off to pain clinic! Anyway, I just thought the NHS was just ridiculous, as I was bounced between Zoladex and the combined pill with no real relief! Well, my Endo progressed to cause PID, which caused a mass I have to abscess which caused sepsis! I have been ill for about 6 weeks! I’m stuck between a rock and a hard place as been discharged to my consultant who’s off ill! So I’m stuck nowhere! I spoke to my GP today who kindly informed me that the reason I have never had repeated surgeries like most people, is because I’m more or less inoperable! My pelvic cavity isn’t accessible and neither are my organs due to severe adhesive diseases! Now I have an abscessed mass and they don’t know how they’re going to remove it, or even if they can! Anyone else found themselves in this position?
Dilemma! : Has anyone been in this position... - Endometriosis UK
Dilemma!
That’s a lot to take on board from your GP after so long. Have you requested copies of medical records? I’m amazed (probably shouldn’t be though) this has never been discussed with you. Did they say when consultant will be back?
I had hysterectomy last month, there were a lot of adhesions, and lost blood because of parts difficult to access, only second ever op and lap was this year as well. I spoke to GP today and he’s contacting consultant as I’m still getting bowel issues. There was no mention of this apart from rectovaginal endo. I have suspicions, but hoping not.
Well, after the first surgery my consultant did kind of say ‘I’d never rush you into surgery’ but other than that, no! I do know my surgery was extensive, it was 6 hours long, had a couple of complications and ended with a relatively long stay in hospital, but no one had suggested that no further surgery was an option. I just thought my consultant was dragging his feet. I asked the GP today why don’t they just go in and drain the abscess and the honest truth was what I got in response. I not easy accessible, and it wouldn’t be simple draining it, never mind removing it! That is why radiology just want me watched via scanned with absolutely no proper plan in place other than long term antibiotics for now! It’s definitely a tough pill to swallow! All I’m allowed to do now is rest and I hope I heal! My bodies took a battering and I’m medically anorexic through illness!
I hope you get yours sorted, this disease is a pain! Xx
I really hope they get a better plan in place soon. At least the GP has been honest even if a bit late, seems you have to ask the right questions.Are the antibiotics keeping it stable or are you getting worse? I’d be surprised if there isn’t a consultant somewhere that would know what to do, might be worth researching other experts.
My GP used the term anorexia on paperwork to gastro back in September/October because of weightloss. Nothing shows on scans, but adhesions don’t really very much.
I’m less than 6 and a half stone! I just dropped weight fast! I am stable on antibiotics, in that, if I’m on them the infection is kept at bay! But I don’t seem to be gaining any weight, or feeling much better! I did stop them over Christmas so I could have a drink and I nosed dived fast! So I’m back on them!
Supposedly it’s the radiologist who has requested that this be the line of treatment for now? You learn something knew everyday because I thought it was consultants that decided, but no, turns out it’s radiologists?
Xx
That’s a lot of weight, you can’t have any strength like that. Do you take probiotics? Could be useful but not at the same time, otherwise the antibiotics will just kill the good bacteria. Might help the immune system a bit.
Interesting about radiologist, I suppose they are still consultants and probably quite experienced at this, but it’s not an ideal solution.
🤞 for a better year 😀
I have been taking probiotics throughout my course! Likely been killed off but have likely had some effect! I’ve been forcing food and water through the nausea! I did get to a point I could stomach anything but quickly got some antisickness off Drs!
Yes it’s bizarre! They even decide what scans are best! It was after the 5th Dr felt my pelvis that they discovered the huge 6-5-6cm mass, the radiologist deemed I needed an ultrasound! I could’ve kicked them! Having a full bladder, a pelvic infection and an abscessed mass is no fun! After that it was deemed an MRI, so could’ve bloody skipped the ultrasound! Then, just to stick with antibiotics and rescan in 6-8 weeks to see if infection has gone? And that’s there plan? Gotta love the good old NHS! It’s always helpful! Lol xx
I don’t get ultrasounds most of the time, such a waste in the long run.I think they are likely giving it this time because of covid as well. It’s awful as your life is just on hold for longer. I really hope they get this sorted for you very soon.
The NHS seems to struggle with gynae issues for some reason.
I’ll eat, nothing like I was, but pain/nausea will hit a couple of hours later, rarely straight away. So I’m careful and try to judge it, but the darned chocolate cake or chocolate gets in the way 🤣, I tend to end up regretting it 🤦♀️ and eating less the following day. Overall I know a seven and eight year old whose eating more than I am and one of those can be picky.
It just feels wrong this way.
I seem to only get ultrasounds! That was my very first pelvic MRI in my life! I think that’s why they struggled at my first surgery! They went in completely blind! I had a lap diagnostic at a private hospital! He opened and shut me in 5 mins, didn’t stick around to even take pics! Sent a short letter to refer me to BSGE, explaining I was a priority without even explaining why! Just that I had a cyst and bowel involvement. So I got put down for intermediate surgery! I waited a year! No scan, nothing! Well it shocked them! They even left me last on list for that day thinking I’d be in and out in an hour! 6 hours later, 3 surgeons, an abdominal drain, kidneys stented, catheter full of blood, I think they regretted that mistake 🤣.
My gynea care has been a mess! I have even started to lose the ability to walk over the last couple of years, but supposedly all my scans were clear? Can’t have been endometriosis? Well now I know why!
Xx
I nearly had a hysterectomy, I was last on list too and they ended up not being able to complete it due to endo adhesions to bowel. They did manage to remove cysts/tubes and a year on I'm not really back to how I was before. I was told there may be problems due to adhesions if I need the hysterectomy in future but they just discharged me so there is only the GP who has very little info and had to ask me what I had had removed in the end ....
The way the NHS behaves is irrational! Do you have children? I don’t, not sure if that plays into their decision to leave me hanging! I did approach my gp once to ask if I could go to another surgeon or get a second opinion as to be fair, the last 4 years has felt like they’ve used me to fund the hospital via parking charges.. my response was “you can try but they may not take you on”. Again hinting at the not suitable candidate for elective surgery without actually telling me straight! My appointments were bizzare! I’d go, either my consultant or one of he’s colleague would ask how I was, I’d be like ‘just the same, nothings changed’ then it would be like ‘keep on your pill and I’ll see you again in 3 months’ 🤣! You haven’t missed much being discharged back to your Dr! I was quite relieved when I almost got put on 6 monthly follow-up.
I also had VIN 3. Was supposed to be on 3 monthly consultations for a year, then 6 monthly for a year, then once a year for life! After the 2nd 3 monthly review got moved straight to yearly!
I swear, I don’t have any faith left in the NHS! You’re on your own when it comes to health!
Surgery is definitely not a cure, that’s for sure, but neither is Zoladex or the pill! In hospital, as an emergency with PID/septic abscess, I was told I just needed a marina coil! A device that increases the risk of PID, in a patient susceptible to PID? Who can’t take progesterone because it sends her endometriosis in to kill mode! I’m like you.. I give up! They clearly have no idea what they’re doing or how to fix it! Which means people like you and me suffer! Xx
It is though, very common, that 6 months after treatment, patients are referred back under GP care, and only if/when they need to be seen again because of reemergence of disease are they then referred back under BSGE! It’s standard NICE guidelines! Out of everyone I have known that has had/have endometriosis, I am the only one who has had sustained follow-up, and 3 monthly is the shortest follow up time! But they’ve never quite explained as to why I needed such follow up either? Never mind really sat down and discussed any future treatments, any plans, or what the hell they was watching me closely for!
Just weird xx
That’s incredible they didn’t do an MRI first, especially a BSGE centre, that’s a consultant being way too confident. It’s certainly a lesson learned but at your expense.I’d consider getting all records and when it’s really bad going to a different A&E with them. That way a second opinion without any interference.
Ultrasound has never picked up anything apart from fibroids, not even ovaries, even then only three fibroids.
I must have been quite lucky, the consultant who did lap (private) arranged MRI afterwards to go with referral, not that the referral was difficult they shared the same secretary in the NHS gynae dept 😂
Potentially you may have a claim, care was way under the standard it should have been and still is.
I’ve never had children either.
I actually did go to a different A & E and had a consultant colposcopist jumping at the bit to take me on....... Illegally! Under NICE guidelines I’m not to be touched by anyone bar BSGE! And my god, that was more dire than the BSGE! 1) I had to diagnose myself! 2) the only thing I was told, not even that I had sepsis, that ‘all being well I'll be going home tomorrow’. 3) I just needed a marina coil even though they increase the risk of PID, and I was in hospital with PID, TOA + Sepsis. 4) 1 of the gyneas on-call mistook my cervix for my uterus! 5) it took 5 different gynea Drs to eventually stumble upon a huge mass!
Then, illegally discharged me after promising they’d contact my consultant, who, although is quite useless at times, is one of the best surgeons in the field, completely did a u-turn and put on my discharge note ‘Kim can contact her own consultant’.
Just when you think the NHS can’t get any worse, it goes and surprises you!
God, ain’t even pointed out how dire the care assistance were, and there complete illegal behaviour, covering up there mistakes by lying! Not to mention taking a blood pressure reading from the calf in a septic person, which massively risked a clot, but they knew more!
If I could afford it, I’d go abroad for treatment! Probably the US! I just need a lotto win first
Xx
The guidelines aren’t a legal document, just purely guidelines that can be ignored if it’s in the patients best interest. CCG’s base their spending on them, but even then it’s just a guide. A doctor is responsible for patient health with the GMC their governing body. Most respect guidelines as being beneficial, but it’s the same with drugs, they can prescribe off licence medication, but have to explain all this to the patient. Not all gynaecologists/consultants even if experienced want the hassle of more governing rules.By going with BSGE there is an expectation of treatment. I know the name of the endo nurse from their website, but never had any contact from her. A lot of guidelines seem to be avoided anyway. Given your circumstances they should be contacting you on a regular basis for support.
You can get healthcare in Europe paid for by the NHS, Switzerland has an excellent healthcare system. There are criteria but you may fit these. The NHS hates this, if you raise it with GP they may start pushing a bit more for you.
If the doctors have lied, you can
report them to the GMC. The CQC is the healthcare bogey man equivalent and they jump very quickly when you get them involved 🤣
Sorry bit long winded 🤦♀️, can you tell I’ve encountered these before 🤣
God, you have. But from my research, and I’ve refreshed this morning, anyone with DIE should not be touched by anyone other than BSGE! I even confirmed it when I phoned my consultant, after the Colposcopist at the hospital refused blank to refer me to my consultant. You see I lived in Darwen when I was diagnosed, I moved to Skipton after surgery, stayed at Burnley BSGE because the next nearest one was Wakefield! I fell ill quickly, therefore went to Airedale, my local A & E! I do know they have one consultant who has an interest in Endo because he did my VIN surgery! Instead I was given head of colposcopy! Pretty sure with complicated Endo a colposcopist was the last Dr I needed 🤣! But they ain’t guidelines! Anyone with moderate/severe Endo, complicated by bowel, bladder, kidneys, liver MUST be referred out of secondary care ie bog standard gynaecology departments, and under BSGE care, by law! They are the only gynaecologists that have specialist trained colorectal surgeons and urologists. A bog standard gynea can only refer you on, not work as a multidisciplinary team xx
You see it on here all the time! ‘My lap didn’t discover endometriosis what should I do?’ And people reply with ‘you need a referral to a BSGE centre, they’re specialists in ‘diagnosing Endo’. Actually, no, they’re specialists in treating the most complex of cases, of endometriosis! Around 5000 a year, in 17 centres! A multidisciplinary team of specialist surgeons, nurses, pain management teams, to make risky surgeries, far less risky! Even when I told Drs at airdale my disease is complicated and aggressive, they was like, nah, be reyt, i can cure you, you just need a coil! Those centres were set up for a reason! Xx
Totally agree that it must be the right surgeon/s, and the centres were set up to treat the worst cases of endo, definitely a good thing 😀 It still amazes me they didn’t do an MRI. My regret is not having one right at the beginning, but I do understand why not as symptoms did only appear superficial.
If drs didn’t follow guidelines and anything did go wrong and shown they hadn’t, their licence could be in jeopardy. If I found a surgeon who was amazing but not part of a centre, I’d be weighing up which would suit me best. As patients we still have a choice, well as much as if that particular surgeon would agree to take someone. 🙂
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