I feel that this forum mostly consists of people acknowledging each other’s struggles but more often than not without any real answers or solutions (because we just don’t have them) and in a similar way to how reddit got together to change Wall Street with investments, or BLM protested and got the worlds attention, Extinction rebellion to a degree , Im wondering if we can do something too.
I’m just done with so many women struggling without any real answers. We close the whole country down to protect the economy for covid and yet this is a disease which makes us ill from everyday through to every month and there still isn’t much done. So many women who have a lap without any change or doctors saying the most stupid things or palming us off. We just come on this forum and get replies of “I feel the same but I don’t have any solutions except to have a warm bath”. It’s crazy that we have to deal with this! I feel that we need to do something.
Sometimes I think about women and young girls who don’t have access to even a hot water bottle let alone painkillers, where nobody knows about it and some kid is just completely suffering with only rejection and absolutely no medical help. It’s really hard for me so I can’t imagine what some people go through. 176 million women worldwide have endometriosis and that’s only who have been officially diagnosed.
I feel like we really need to do more than what we’re doing. If we don’t then it’s going to be a very slow change. There are so many of us all over the world. We can do something. Even if you’re too ill to walk then you can write. We know how to endure and struggle and we have a lot of power to make a change. I personally want solutions over empathy.
I’m pretty sure if there was a progressive disease that caused intense pain in men’s balls and caused infertility and sickness then more would have been done already.
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Beech33
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This forum is just for support. I run a group who's primary aim is to guide women to appropriate care via all the NHS guidelines and standards that are in place and there are many of those. But many of the GPs and consultants haven't even heard of them. So there is a disconnect there that we try and bridge through members educating doctors when they go in and lay down how they should be treated with their evidence in hand. So education of doctors is key point 1. But we can only help women to care by having an understanding of their own medical history as this determines what guidelines/standards should be applied to them, where should they be treated etc, in secondary or tertiary care, which criteria do they meet? But we are not allowed to ask any questions about medical history so it's a non starter on here. I just get complaints come through from Admin when I try to help by asking such questions. And we are not allowed to give links to helpful resources.
The other key point is the understanding of the disease itself and endo must be one of if not the most complex disease in existence. It is a systemic disease of the immune and endocrine systems that manifests as the lesions we know, usually in the pelvis, but there is so much else going on that researchers are still trying to unravel. The more they find the more questions are posed as it is so exquisitely complex. Contrary to what is often claimed there is a lot of endo research being undertaken.
So really all we have as patients is to learn and educate our doctors to try and force them into action but as you have discovered this is not the forum for it due to the limitations on what we can discuss/share. There is very little admin moderation and rarely any real answers or solutions although there are sometimes inaccurate answers that can actually be very harmful.
Well you are doing something so it shows how important it is. I feel that if we got more people together to do more then there’s more chance of a breakthrough. For example if people were aware of the challenges in the service you provide then it could help with what you’re doing.
It’s difficult with one or two people but if more people decided to turn the power in their endurance into action then maybe we could help with things like government recognition for disability rights or more pressure on doctors to be better educated on it. Seeing teenage girls on here is motivating because they’re really at the beginning of it and the thought of them
enduring it for 30 years isn’t right. There’s more we can do if we actually put action to it.
Yes I agree. I and our members are acutely aware of the challenges in the service my group provides (if that is what you meant - we do have over 7000 members) and why I have learned every guideline/standard etc inside out to enable us to work with the NHS, RCOG, RCGPs etc for better education and we are making great strides. But good luck in what you want to do - but as said this wouldn't be the forum for it really.
I have tried to improve services at my GP surgery by explaining my experiences of their care and the ways they could improve. I think (although it's tough) we as patients need to feedback when things go wrong so it gives them the opportunity to improve. If we don't they won't be aware.
Totally agree with you BTW.
Can I help you with anything? I have done a lot of research regarding natural ways to slow the progress of endo and manage the symptoms. Happy to share the info if you send me a DM xx
Hello, I would be very interested in reading the research you have done into natural ways to manage endo symptoms - would you be happy to share? I have been hoping that things will ease off as I approach menopause (I'm 44 and show signs of perimenopause), but my symptoms are getting worse, and I am experiencing episodes of acute pain that are unbearable more often...I have been looking at the medical options, but have also gone back to considering other natural approaches, which ultimately I would prefer.
Am I right in thinking that March is endometriosis awareness month?! I remember hearing quite a lot of coverage in the news last year. The more women that feel empowered to speak up and raise awareness, the more other women will seek answers, and so knowledge will grow. With more awareness will come more pscientists wanting to tackle it, and more understanding from funders. Here’s hoping!
As started, there’s 176 million suffers worldwide and also, a few that haven’t been diagnosed. I don’t know the standard lap time, my diagnostic lap lasted 5 mins, because I was so severe, but I bet all in all, pre-surgery, lap and recovery is 2/3 hours!
That’s a lot of hours worth of surgery with not many knowledgeable gynaecologist surgeons to hand....
There’s 3 types of Endo! Superficial, ovarian Endo and DIE. Some with mild disease, others with severe disease, and no Dr knows what he’ll find when he goes in because someone with mild disease is shouting more than someone with severe disease!
It’s not known to cause death in the vast majority of cases! But, I’ve almost died a few times from the infections my severe disease causes! How does a Dr differentiate, also only x amount of MRI scans, that are needed to diagnose other diseases too!
As much as I feel fobbed off, and believe me, I have been, the truth is we do not have the time, never mind resources!
How many people on here, and don’t get me wrong, I feel sorry for them, have laps that find mild disease or no disease push for further laps? Believe me, if they had severe disease, no surgeon would miss it, not even a blind one!
1% of those 176 million have severe disease! Severe disease damages organs! They’re the ones that should be at the front of the queue in my opinion, regardless of their pain! It will cause irreversible damage which may not hurt now, but will in time to come when their bowel, or bladder or lungs or whatever are damaged by this disease!
You gotta remember, those exceptionally talented gynaecologists with extensive knowledge in Endometriosis, who are at top of their game surgically are also oncologists! And people with mild disease, or no disease try to force their way into see them?
Some advanced excision surgeons might also have oncology sub specialism but endo is a completely different specialism. The usual sub-specialism is Reproductive Medicine with the advanced ALAP or equivalent, neither of which include oncology. Top endo specialists need to specialise in just endo and personally I wouldn't be operated on by anyone who's main specialism is cancer. Most of the top ones I am aware of are advanced endo excision surgeons and not oncologists, present or past.
When you say no Dr knows what he (or she)’ll find when he goes in because someone with mild disease is shouting more than someone with severe disease, that certainly shouldn't be the case in many cases. There will often be indicators to suggest severe disease such as nodules felt on clinical exam (the most common location) and/or large cysts in association with typical symptoms. Pelvic mapping with pre-lap scans (TUS/MRI) will usually locate deep endo so that they will have a good idea what to expect by which time they should already be in a specialist centre with the surgery carefully planned. That is where education is vital so that those seeing women with endo know how to do a thorough clinical exam and how to identify typical symptoms that are often written off as not endo related (IBS, back, leg pain etc).
Severe disease can be missed at a lap even by the most advanced surgeon as it might be retroperitoneal and not show at all.
I’m sorry for your advanced endo. I would say it’s not good practice to turn on women who are shouting loud due to their suffering. Sometimes advanced endo causes no symptoms and sometimes a tiny bit will cause a lot of pain so it’s very complex and nobody is the same. It’s shooting yourself in the foot to blame women for pushing for help. But you can go down that road if you choose...
My surgeon said I was between stages 1 and 2 but I’ve had this since I was 14 and have intense symptoms including my legs and bowel. I can’t run for longer than 10 minutes because it causes a flare. Lost three jobs due to sickness, ended up going self employed to avoid the doubt from managers but then I end up losing money each month from taking days off, had an implant to stop my periods, came off it and haven’t been able to conceive. Had a lap which doesn’t seem to have done anything as nothing has changed, still got intense bowel pain too. So just because someone is in a lower stage doesn’t mean they don’t need treatment. I agree that advanced patients should go to the front as is the same for every disease (that doesn’t mean people who are in less severe stages should be shamed for pushing for treatment) but I’m not going to stop pushing for treatment as it’s heavily affecting everything in life.
Hi, totally agree with you here. I know I’ve had symptoms before get my first contraception as a teen. Then staying on the implant for years to be told heavy and painful periods are normal where no mention or concern to refer me to a specialist was ever mentioned just iron tablets as I am anemic. I’ve been thinking myself lately that if a person were bleeding constantly internally or externally this is considered serious. I bled for 3 months straight before and still did not get advise or referral. I have been to A&E with extreme pain to be asked what do you want to gain from this visit as I was not pregnant they did not want to know. I finally got a referral after being firm with my GP last year and saw an NHS gynaecologist but I got told the most incorrect and untrustworthy information like surgery is a complete NO if I want children which I know is not true after researching it more afterwards and as I’ve not had children having the coil in would require a hysterectomy to take it out!? I thought no this cannot be true. My internal and external ultra scans came up ok and I requested a MRI and blood tests to check my hormones but got told NO waste of time and left it there. I’ve paid out my own pocket for a second opinion at a private practice self referral which did help to some extend and started saying this condition is starting to really make me feel low to then be told the most rudest of things like invest in a treadmill (I’ve put on weight over the years probably from the implant as I generally eat a balanced diet and found it very hard to loose it as I suffer from extreme fatigue constantly bloated and currently been bleeding on new form of contraception for 8 weeks straight hence my self referral) because of my current weight I am limited which I am trying to fix but living in a flat during COVID it’s not easy to excerise. Ive been told just loosing weight will help it as it’s what made it happen in the first place which is not true as I was a very skinny healthy weight before and still had pain and bleeding. So it’s not easy to get diagnosed when your overweight and just makes me feel even worse. I want to help and raise awareness on this and tried to have decent conversations with GP and specialists but I’m getting g so many conflicting information I am not sure who to trust as realistically the longer this goes on the more unlikely I can try for a baby in the future. The Female reproductive organs are very important and something needs to be done to help all of us struggling. Let me know if I can be of any help.
I was underweight as a teen and still got it so they don’t know what they’re talking about there. Mind you, I was told I was too young for endometriosis at 30. It doesn’t fill you with confidence when a doctor doesn’t know what they’re talking about.
I completely agree, it makes me so angry that there isn't more funding for research. Diseases with an impact on a similar number of people have 4x...6x....10x more funding. As a quick comparison, diabetes is often considered as having a similar impact on women. A search on gtr.ukri.org/search/project... which lists UKRI research projects brings up 29 projects for endometriosis versus 1,649 for diabetes. Chron's disease affects only 115k people in the UK (according to NICE). A search for this brings up 16,035 projects (although surely this can't be right!?). While I am not suggesting that diabetes or Chron's are any less valid than endo and my quick searches are not highly scientific, as a comparison it is clear that endo is chronically underinvested. I have searched for other chronic conditions and I can't find any other that has so few projects listed.
I feel like educating doctors etc is just papering over the cracks, when the key issue is that even consultants that specialise in endo are hamstrung by the lack of knowledge. I am lucky to now be at a hospital that has great endo care but even so, if I had a pound for every time they say "it's not well understood."
I also want to do something but I don't know what. I feel like if we could get everyone in the Endo community to write to their MP....
I also feel like pharmaceutical companies would invest in research if there was more awareness - there must be a lot of money for them from a chronic illness if they could develop a drug.
I was pleased that this got 100k+ petition.parliament.uk/peti... so will be considered for a debate but then I heard some reality TV petition got 300k and got depressed.
Be the change you want to see. If you are going to make some noise, I'm in.
I personally believe that in terms of treatment/management educating doctors on how to identify symptoms, carry out appropriate diagnostic tests and a knowledge of when to refer on to someone with the right skills is absolutely key in controlling both numbers of undiagnosed, diagnostic delays and appropriate treatment as early as possible so as to reduce numbers of those who go on to develop severe disease. I'm not sure how that is just papering over cracks.
Educating doctors on how to treat the disease based on what we know now and research into the aetiology/pathogenesis to further that knowledge are different issues.
In terms of research it's not about numbers of studies but their quality. In the same way as there are relatively very few surgeons who have dedicated their lives to treating advanced endo (which might take decades to perfect with utter commitment to that one specialism) there will be very few immunologists/endocrinologists/aetiologists etc in the world who have dedicated their lives to collaboratively delving into all the exquisite complexities of endo who are equipped to do the research and in doing find yet more complexities to try and unravel. I would say that Chrons and diabetes are far less complex with far more able to study those diseases. Those few who truly have the knowledge to study endo must be so disheartened to repeatedly hear that little research is being done .
Actually I have heard researchers say the same. It is underfunded and more needs to be done. I have seen so many Gynaecologists and they say the same. "I'm sorry, there is not enough research and we just don't know."
I am sure you didn't mean to imply that no more funding is necessary but if you truly believe that there has been enough, you have been phenomenally lucky with your treatment and your body's response to it and I salute you.
I also apologise if I implied that raising awareness is not important. 100% that is one of the battles and in itself would hopefully lead to more research.
All research is likely to be underfunded if we wanted to have millions of researchers working round the clock trying to find the cause of endo but it is a fact that money won't but those millions of researchers needed. A leading US surgeon agrees that there is much research being undertaken despite what is often claimed to the contrary. Clearly the researchers you have talked to disagree. But I doubt there will ever be a cure unfortunately hence why most research is into treatments. Those working on the potential root cause (s) - immunomodulation for example and all the challenges that then brings with it - will be so highly specialised that there are probably very few in the world qualified and who have chosen that specialism. My point is that money can't buy them.
There is something we can do now. There is a debate in Parliament on 18th October on increasing research funding and the charity has launched a Write to your MP campaign which is here: secure.endometriosis-uk.org...
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Endometriosis or something else? 
Can endo have anything to do with sleep problems?
I'm in pain everyday! Is this normal? What can I do? 
Just saying hi and offering any support anyone dealing with endometreosis needs if I can xx
