So, after my last experience, of once again, almost dying due to lack of any common sense from consultants, I have decided that after this surgery I will be self discharging myself from any clinic regarding Endometriosis! It would appear you have to almost die in order to get them to intervene, so that’s what I’m planning on doing! I am going my own way, regardless of the state of my health!
I will no longer be listening to their BS, taking their poisons, and will be looking into better ways of dealing with this disease!
Twice now it’s almost cost me my life, and twice they’ve never prevented it, so, no point attending their shitty follow-ups!
That’s my rant over!
Written by
Heloo85
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I'm so sorry that you are unhappy with the treatment you have received. You can ask for a second opinion if you don't feel like your doctors have addressed your health issues.
You can also make a complaint if you are unhappy with the treatment you have received, you can do this via the PALS (Patient Advice and Liaison Service) at your local hospital.
Please do reconsider attending your follow up appointments, even if you are not happy with their recommendations, it is useful for you to know what they have to say, should you decide to get a second opinion.
Please have a look at the information on our website, this has details about the different treatment options that are available, this may help you to decide what is best for you and will enable you to discuss different options with your doctors endometriosis-uk.org/inform....
You may also find our support services helpful, as well as this forum we have a Helpline and a network of support groups around the UK, details of these can be found on our website endometriosis-uk.org/get-su....
Best wishes
Lynne - Endometriosis UK
Hi Heloo85,
It sounds like you've had such a frustrating time. I'm really sorry to hear that it's been so difficult. You're so right to feel angry.
You're certainly right that what you think and feel really and truly matters. One major component of our health care is self-advocacy. It's good when we can speak up, be heard, and find out who the next best person is to speak to.
If you've hit a "brick wall" down one avenue, please do consider trying different avenues - speaking to different GPs, different consultants with different specialisms, and checking resources for leads.
Endometriosis is a specialism, and new information is coming out in research each year. I think there's a long way to go before there's a perfect health package for people who have endometriosis. But, maybe we can find ways to cope, using what is known - after working to get at that information.
Thank you! I am frustrated, I have been on this Endo journey for 5 years, after being fobbed off for many years before! And only because this time I wasn’t standing for it! Which then resulted in ending up at BSGE, surgery, then on 3 monthly consultations for 4 years to almost die! I don’t think it has anything to do with them not knowing anything, it’s simply more to do with not caring! I went every 3 months, told them how I was feeling, and went for regular ultrasounds, which it turns out, although wasn’t clear, actually told me they where! 😂
So even in the face of symptoms and scans, it still took almost dying for them to act! My first surgery, I had a Fallopian tube removed (turns out they only removed part of it), this surgery I need now is to take an ovary! I mean, this is the slowest hysterectomy/oophorectomy in history! But they won’t take it all! And I know it isn’t a cure, but surely, they know themselves, the more surgeries they end up doing, the worse it’s going to be! My dad only had one abdominal surgery and 10 years later almost lost his life to a strangulated bowel, so I’m aware of the risk of surgeries! But at the same time, my first surgery was actually not because of Endo itself but because my Fallopian tube was actually wrapped around my bowel, suspending it! This surgery is because my ovary is attached to my bowel, and is infected! I don’t want to keep having these problems of organs wrapped around or stuck to my bowel, I know exactly where that can lead.
Be persistent, call sec every other day 😂 I felt like I did last year, although the qty is a bit exaggerated.
I’ve had a referral to another endo centre, although when I asked if they wanted my medical records they put the referral to general gynae. That’s changed now 😂
More seriously it’s horrendous, they aren’t that overworked and they chose a career that is supposed to care, it’s making a mockery of the NHS.
Put in a complaint, I’m in the process of this, I’ll be stepping it up a gear next week as putting together a letter to CEO.
The thing is, what do these ‘experts’ even know? Less than us who have to suffer! So, last time I tried progesterone, I bled so much I was hospitalised in under 2 weeks! The combined pill causes me to break out in pre-cancerous lesions! Zoladex? The side effects are intolerable! We can have surgeries, after surgeries, after surgeries and it still won’t solve the problem!
Don’t get me wrong, Drs p*ss me off too, but there’s not really much on offer! I am mad that the ignored the bowel situation and more than likely just left this ovary adhered to my bowel 4 years ago, and I almost died, because of it! But someone, at this point, needs to come up with something that actually works for people like me and you!
None of the medical treatment as eased my pain! I refuse to take painkillers for the rest of my life! At this point it’s pretty hopeless! Xx
Can’t deny anything you’re saying at all, it’s horrendous. I’ve had similar thoughts. The only consultant that seems to put things down properly for me is the pain dr. It’s more difficult for him in picking up the pieces, he couldn’t even say I’d got it wrong about Gynae when he flicked through the notes. He’s listed on the BSGE site as pain specialist. I’ve told him I don’t want medication for ever either.
I’ve also realised that at A&E asking for intravenous painkillers they think I’m addicted, should have shown them the two bottles of Oramorph I still have 🤦♀️
I’ve now managed to potentially prove that my thoughts about CPAP enhancing what was there backed up and prove gastro wrong 😀. It can give a slight win.
Everything you’re saying here have you put it to gynae? I’d send it all to the secretary and watch them jump. They’ll know they’ve really screwed up this time.
I told the consultant directly how he’s screwed up and all he kept trying to do was blame me and backtrack which didn’t work either.
I really hope the researchers at Edinburgh are successful and find that the medication works and pdq.
You are incredibly strong, and deserve much better without all the crap.
I have a 15mm Endo growth between my bladder an uterus, on MRI and was told ‘yes but it’s tiny’. Yes but that was 10mm 3 months ago, so it’s grown by 50%! It’s not going to stay tiny is it? Lol!
Comes to something when even with disease present on scans they shrug it off as if it’s nothing 🤣! That’s without the fact that we all know, scans mean nothing! They do not show the whole story, as they do not show the adhesions, which is by most part, the most painful part of this disease, and the most potentially life threatening!
Have a look at ARD! Adhesive disease! It’s people who unlike us, have no disease, sometimes not even previous surgeries, end up with a mass of adhesions for no real reason, end up in chronic pain!
Now we have disease, either active, or even if we’re lucky and in remission, have damage caused by that said disease! But still make out we ain’t suffering, can’t possibly be that, it is all in our heads...... Pfft! Hate Drs! Xx
Doesn’t look like it’ll stay tiny 🤦♀️ I ignored GP’s when they three fibroids showed up on ultrasound, that to me confirmed gynae issues and demanded referral. 😂 Fibroids needed up numerous and in difficult places, didn’t show on any scam.
I reckon you should show the gynae this thread might hammer home a bit more. They need a wake up call.
Fibroids, like Endo, grow because of high levels of oestrogen! I too have a fibroid! Another one you’ll find common among Endo is a liver hemangioma, they also grow in response to oestrogen!
But the Drs are wrong, treating the disease will not treat the damage the disease causes!
If you’re very lucky, and in early stages of disease then yes, those medical treatments will work! But if you’re end stage, not a chance! They may lesson pain by removing inflammation, but they won’t cure it!
What can cause adhesions to grow:- disease, infection, surgery! I mean, I’ve got disease, that likes to trigger massive infections, that then needs surgery! Surely, the right thing to do, seeing as they probably knew this ovary was stuck to the bowel all along, and a cyst was then noted back in 2019 on this ovary, was to treat it before it caused a massive infection, not after! Grrr! That’s what annoys me! But then again, what do they really care? It’s not them that has to suffer the consequences of their own actions 😡 xx
Totally agree, damage has to be handled differently, if endo is dealt with quickly that will reduce things.
The first consultant I saw who diagnosed endo asked if I’d ever had a bad infection as it can go hand in hand. I really wish he specialised more in endo, he’s experienced with the condition but has interests in cancer and vulva clinic.
I’m using the ‘I want to work like you are and sit in a chair properly’ that will also be in the letter 😂
I’ll be making sure to be as blunt as I can.
I’m still surprised you are on a long, low dose of antibiotics to really knock it on the head.
Women with endometriosis have a significantly increased risk of lower genital tract infection, chronic endometritis, severe PID and surgical site infections after hysterectomy. They have more colony forming units of Gardnerella, Streptococcus, Enterococci and Escherichia coli in the endometrium. In the cervix Atopobium is absent, but Gardnerella, Streptococcus, Escherichia, Shigella, and Ureoplasma are increased. They have higher concentrations of Escherichia Coli and higher concentrations of bacterial endotoxins in menstrual blood. A Shigella/Escherichia dominant stool microbiome is more frequent. The peritoneal fluid of women with endometriosis contains higher concentrations of bacterial endotoxins and an increased incidence of mollicutes and of HPV viruses. Endometriosis lesions have a specific bacterial colonisation with more frequently mollicutes (54%) and both high and medium-risk HPV infections (11%). They contain DNA with 96% homology with Shigella. In mice transplanted endometrium changes the gut microbiome while the gut microbiome influences the growth of these endometriosis lesions.
Taken from the NHS website, I’ll follow with the link! But every time I end up with a pelvic infection it’s cause is clearly an STI? 😡
I’ve just read actually, that in mice, Endometriosis was almost reversed by the use of antibiotics!
The diagnosis of PID, just like Endometriosis cannot be diagnosed properly without a lap to differentiate between an STI or Endometriosis!
People, including Drs, have no idea! Abscesses can form out of the irritation Endo can cause, especially in deep infiltrating! Your risks of both infection and cancer is increased with Endometriosis xx
I’m sure I’ve seen that somewhere. I’ve thought about asking GP about a low dose for a month to see if it helps. Next time I’m in touch I’ll ask. Sick to death of contacting them at the moment.
I’m sure every time I had them in 2019 for uti things felt easier for a time, not so many last time. They rarely refuse my requests 😂
It has to be metronidazole! No other antibiotic is effective! It was discovered in America and as of late 2019 it was meant to hit human trials! It’s recommended that you take probiotics alongside them! I may ask my gynea, as 2 very severe infections is enough to warrant a long dose of antibiotic therapy! I mean, I take their toxic ideas ie Zoladex! Xx
You should ask, I doubt they’d say no, don’t think they’d dare. It’s likely the best way to tackle it and if it doesn’t help it’s unlikely to make things worse. Give Sec a call Monday.
I always take probiotics, with antibiotics take them at a different time otherwise the antibiotics will just kill the probiotics. I think people only build up resistance because the body lacks the right flora to fight in between taking antibiotics, it’s a vicious circle.
Read that! She had a large bowel obstruction, couldn’t figure it out, was sent away with metronidazole, reported she actually felt better, but a month later the symptoms returned, and was later discovered to have Endo!
1) they thought there was nothing wrong.
2) antibiotics were fob off
3) they actually cured her symptoms while she was taking them
4) symptoms returned after they was stopped and it was that point they realised it was Endo!
Actually, scrap that idea! The longest anyone’s used metronidazole is 4 months and ended up with convulsions! Maybe not the miracle drug that it is being made out to be 😭xx
Funny enough though, my first major ‘infection’ as in PID, resulted in almost 6 months worth of antibiotics! I would get better then within a week or 2 of finishing the 2 week course the symptoms would return! Hence the lap, which discovered Stage 4 Endo! This time was the same! Except Drs wouldn’t give me more than 6 weeks of antibiotics, but are now questioning if I need more! Again, got better, stymptoms returned within a few weeks of stopping them! There’s definitely something in this theory! I think Endo uses infection, or creates infection for its benefit! Xx
A sleep consultant last week doing Q&A on a webinar suggested SIBO last week. Didn’t think to mention it to dietician, forgot about it. Having looked it up one of the suggested treatments is metronidazole. Has to be some sort of link. I’m going to phone the dietician and ask for a test if they do them on the NHS otherwise will ask GP for those antibiotics
They said they found in mice that the bowel was the main driver! If the gut was healthy, it stemmed the Endo! If it wasn’t, then it would drive it! It’s definitely an Avenue to get back in control when really suffering! I bet it could cure those who are mildly effected! It’s just unlikely to be a cure for us with severe disease! Each time I’ve stopped antibiotics the symptoms have come back!
I’d say my diet is good! I am currently underweight, but normally a good weight! Up until my first surgery I was very active, kept horses, after remained moderately active, with walking! Not sure what else I can try! Xx
I’ve left a message for the dietician and gastro. Secretary of gastro was awkward and said any complaints need to go back to complaints, she knew who I was 😂. Eventually managed to ask about a SIBO test. At least I’m getting infamous 🤣
Dietician sent me some protein powder with vits/mins, might be worth asking for some to try.
Although I haven’t ridden for quite a while I used to race & work with Arab horses.
I make my own protein shakes! With fresh fruit, protein powder, full fat for calories and nuts ect! Have done for years to keep weight on!
I was 7st 7 up until I was 25! Never a pound over or under! I am petite so that was a healthish weight... Then I dropped like a stone to 6st 13, never a pound under, or a pound over! Nothing changed, diet or exercise level! I did just drop to 6st 5 and managed to pull myself back thankfully! I’m currently 6st 12, which is still a pound under my normal weight 🤣.
My identical twin sister is about 9-10 stone! We grew up the same, ate the same, did the same! Only difference is I started my period early! I was 11! She was about 13!
I have a weird metabolism me! I don’t seem to store much in the way of fat, but build muscle! People generally gain more weight with being less active, due to inactivity brought on by chronic disease... I am the complete opposite! The more inactive I become the less I tend to weigh! No idea why xx
It’s good you’re aware of it, the medical profession need to do something ASAP to help you. Sent of letter to CEO, recorded first class. I will do what I’ve told them I’ll do. 😂
I’ve also mentioned that women with gynae pain are treated appallingly, March is endo month, there is nothing on the CCG about the hospital being a BSGE center or endo. I didn’t mention that maybe it’s fortunate there isn’t a mention of them 🤣
This is their opportunity to get their house in order and accountable.
I’ve just asked my Dr for metronidazole! Told her about the research! Anyway, it’s not about pain!
Yes, right, I am reluctant to treat my pain! I refuse to spend the rest of my life on painkillers! So much so, I take none! I mean, I can’t take many for various reasons anyway! My option for pain relief, is paracetamol 🤣. BUT I do actively try to treat Endo itself! I have had 5 courses of Zoladex there or about! I tried the mini pill, it caused me to bleed so much I was hospitalised within 2 weeks! I don’t know what it is about my particular Endo, but my consultant actually advised against it, and well he was right! So hello, combined pill back to back! I ended with a precancerous lesions of the vulvar and THE worst chronic thrush infection in the world, so I had to discontinue that..... To end up almost dying again! 🤣! At this point I’m out of treatment options, so how the hell are they going to manage me from now to supposedly ‘cure’ which is menopause? That’s what I’ve asked them today! 🤣 xx
Good for you, give them something to get their minds on.
Haven’t heard from mine but they have until end of play tomorrow.
I don’t want to live on pain killers, Drs hate opiates but when you fight to get proper treatment to get off painkillers they run the other way.
It must be harder with limited options. I tried desogestrol for about a couple of months before lap, didn’t do much, neither do the painkillers anyway.
I’ve got jab tomorrow, not looking forward to it, but once I can work it’ll likely be a requirement
I went for a walk around park, and I’m literally in agony! Can’t even stand up, and I’m worn out to the point I can barely keep my eyes open!
What’s masking the pain going to do!? It’s actually only masking the damage Endo is actually causing! They need to treat the disease, not the symptoms! I wonder how many make it to menopause to find out that their symptoms have magically just gone! I bet not many who have had serious disease that hasn’t responded to treatment!
If they don’t do anything now, what are we going to be like in 10 or 15 years? I mean they ignored me for 4 years, until I almost died, to go ‘ffs, if we have to!’
I’m honestly done, I’m not standing for it anymore! They think we’re just stupid! Oh here, take your pills, like a good girl, that pain relief will cure you! 🤣
That’s exactly how I feel, 😂 I think gynae realises he screwed up by not keeping me in the loop and assumed everything would go away. I find I’m avoiding things if it’s likely to cause issues, not good either.
Everyone here has a right to a better life. If they listened the first time it wouldn’t take some years to get anywhere. The first thing a GP should consider is gynae when a woman turns up with abdominal/pelvic pain, absolutely ridiculous.
The thing is, the first thing they think of is the clap! I’m not even joking, I’ve had it from every Dr! What has surprised me the most this time, is thats what gyneas think too 🤣!
How anyone gets a diagnosis for something serious, is beyond me! I mean forget the red flag that is sepsis, that I’ve had twice, my first ‘explosion’ of PID was horrendous! I had litres of clear fluid falling out my private parts, I couldn’t leave the house! I was peeing myself, pooing snot and blood, I actually thought I had cancer! They thought I had chlamydia 🤣 xx
I need this information! We need to make a stand for serious suffers! I had ‘symptoms’ for years until that explosion.... It was obvious it wasn’t ‘chlamydia’ and again, for a whole year before this sepsis I was saying to my gp that I could feel my health declining, I am loosing weight! I was actually back randomly passing out too! It was obvious it wasn’t the clap ffs!... Although I say I just exploded, what I mean is I had symptoms of something going on for a very long time before hand that went ignored to the point it lead to a medical emergency! To be fair, all diseases, if left long enough, will do that! Ignoring me is not getting any of us anywhere! I almost die, then they have to go in! Why not just treat me before that point?
I have gone to town! I am going to print off that information and hand it to my consultant! Honestly do not get it! This is our life they’re ruining by making shitty decisions! I honestly think they think we are taking the piss! Xx
I think they are becoming bureaucratic idiots and forgetting about the Hippocratic oath they take on becoming doctors. They are too afraid to do what’s right these days in case it affects their pockets and the other pies they have going. GP’s all have sidelines funded by the CCG’s.
Whether it’s out of hours work, businesses that ‘create’ that feeling they are helping, which believe me is a huge failure. Since I told them never to point me in the direction of their crap same day be seen by a GP, that is unlikely, to be from your own surgery, they haven’t.
They are the ones taking the p, we’re only trying to get help.
I put down on the questions form, given that women are needed to keep the human race going with the gynaecological aspect wouldn’t it make sense to do things much quicker to help. 😂🤦♀️
I know, and all the snowflakes are always screaming that they should be paid more! Shouldn’t they be forced to do their job first 🤣.
I don’t feel guilty anymore, I just hound them, and I don’t care! They should feel lucky people like us exist, as without us, they wouldn’t have a job!
But I think that’s the problem! The number of people who have a severe diagnosis is relatively small! About 1%! That’s not enough to keep them all in work, so started telling the world it was depressed and anxious (it’s on tv all the time, brainwashing people). If they treat us to cure us, we are out of the system! Best to do half a surgery then keep me on ‘follow up’ than do a proper job the first time around, and discharge me! He gets paid for every follow up I attend, except I don’t get treatment, just left to almost die! It’s a sorry state of affairs to be fair! And it’s all based in greed! Xx
There isn’t enough structure to get things done efficiently, not that everyone or everywhere is like that and there are very good people They forget they need patients 🙂
I don’t think the gynae will forget me in a hurry 🤣
Sorry you are suffering I saw you mention the antibiotic I actually trialled it on myself didn't ask advise from a doctor cause like you say what do they know I took it with priobiotic it didn't do anything for me I took it for two months seems it only works on mice they don't recommend you to take it because not enough people know.I'm trialling the mirena and this will be my last chance to treat endo then it's back to natural treatment I don't know my stage as I get different opinions from everyone my endo started suddenly and your right about surgery it can make it worse also these specialist are specialist in removing the endo but don't have any other knowledge o hope you feel better emotionally soon and find some way to come to terms with your diagnosis I've not had specific endo surgeries I started my own research and made a decision not to have surgery app the best
I agree, surgery should be last resort! And it’s not as though I’m knife happy! My father almost died 10 years post surgery from a strangulated bowel, then sepsis after they removed the nectrotic bowel! I am fully aware of the risks, hence why I don’t want repeated surgeries.
I had pain and severe symptoms from a young age that I actually ignored, but I actually wasn’t diagnosed until I was 31, after I woke up in a puddle and thought I’d peed myself! I had lts of clear fluid falling out of my private bits! And I mean, I filled a pad with the stuff in seconds, after which I actually started to pee myself, then started the pooing snot/blood! I was convinced I had cancer at that point! I looked like I was having an alien, because only one half of me looked pregnant! I was massive on left side! At this point, my gp was fobbing me off, even reluctant to give me antibiotics because my chlamydia test was negative! I went back and said ‘here love, I’m pretty sure I’m not supposed to be able to grab my Fallopian tube!’.. She panicked and sent me for an ultrasound! While waiting I went downhill, at this point thought I had sepsis, so went A & E to discover I did have sepsis markers but they sent me home because it was a ‘virus’. The next day I had the ultrasound, which went back as an emergency to GP who didn’t understand the meaning of it, so advised me to go to GUM clinic, which I did that day and it was discovered I had a bad bacterial infection! I left with treatment for PID, then phoned a week later to told although I definitely had an infection, it wasn’t an STI! This then prompted my GP to send me to a gynea to see what was going on! At this point I was sure I had cancer 🤣! I needed 6 months worth of antibiotics to clear that non-sti infection! A lap was performed and I was opened, then shut, at a private clinic, because my Fallopian tube was causing a large bowel obstruction! No surgery was not an option.
I am in a huge amount of pain, daily, but do my best to try remain healthy, my diet is healthy, I stay as active as I can! No where near the athlete level of fitness I was before all that happened, but more active than most pain free people! I have treated my Endo with every single medical treatment on offer! And tried to ‘manage’, which is pitiful to the level of manage I could do before all that! Until I ended with Sepsis again! Except, now, my ovary is attached to my bowel, infected, which may result in a colostomy when it’s removed! Again, can I go without surgery?
I have tried diet, exercise, vits/mins, medical treatment AND surgery, and my problems worse now than it’s ever been! There’s literally not much left to try, bar a hysterectomy/oophorectomy xx
I can’t have progesterone! I don’t know what it is about the pathology of my Endo but it’s been sub-classed as aggressive! Me and my GP thought we was being clever, thinking my consultant was wrong, and decided to go with the mini pill over the combined! I bled so much that I was hospitalised in under 2 week! It’s not for me! I was on the combined pill back to back when this endometrioma cyst thing started to form on my ovary! I don’t respond to hormone treatments! Hence the antibiotic idea! Because I do seem to get severe infections for what is no known reason! Xx
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