I had the pleasure of attending the an endometriosis information day held at UCL in London on 6th October 2012.
It was run by Endometriosis UK (the UKs leading endometriosis charity). I know that many of you either live too far away or were unable to attend due to illness, so I consider it my pleasure to provide a summary of the day, and the information provided.
Firstly though I highly encourage you to attend the next Endometriosis UK information day if you are able. It was a really enjoyable, informative and positive day. Although it was a long day, all of the seminars were insightful and the Endometriosis UK staff and volunteers were an incredible help – a shining example of how this disease can bring out the best in people.
Crucially though this was my first experience of meeting and talking to other endometriosis sufferers (in person at least), and I made a lot of new friends. So the day became as much about chatting to others about the experience of endometriosis as it was attending the seminars.
I really can’t do the day justice, but I’ll do my best.
The day was broken up into an agenda with a choice of sessions, so I attended the following:
- What is endometriosis?
- Medical treatments & endometriosis pain management
- Disability & work issues
- Diet and nutrition
- Surgical treatment of endometriosis
- Endometriosis UK summary
What is endometriosis?
The first seminar was a lesson on what endometriosis is, including some fascinating insight into the illness that I wasn’t aware of. I was expecting to know a lot of the information discussed, but came out of it really illuminated and positive.
Best summed up with some details that resonated with me:
- Women with endometriosis that also experience pain as a direct result 40 to 70 per cent
- Affects all races and background types, does not discriminate
- Present in up to 50 per cent of women having difficulty in trying to have children
- Endometriosis is possible in men (occurring rarely when men receive treatments for certain types of cancer, this is due to oestrogen-based treatments).
Causes of endometriosis
To become pregnant our bodies allow sperm to travel up the fallopian tubes in order to enable eggs to be fertalised. It’s this same route that allows blood to travel there too. It’s very common for blood to be found in the pelvic cavity (outside of the womb) what sets us apart as sufferers of endometriosis is our bodies tendancy to allow the cells in the blood to allow this material to remain and grow where it shouldn’t. This retrograde menstruation is the cause of most women’s endometriosis.
Our body’s blood vessels can also allow endometriosis cells to travel elsewhere in the body too, perhaps into the legs, arms or even the lungs or brain. This is a process known as desemination.
Immunological factors are a big cause also. What this means is your genetic likelyhood for your body to break down the cells from the blood that can end up in the pelvic cavity. In healthy women this works as it should. In endometriosis sufferers our bodies don’t attack the cells as they should and areas of endometriosis can grow (and bleed) trapping more blood in the pelvic cavity and causing inflammation.
Surgery can also be a cause of endometriosis. Historical operations (such as ceasarians) can leave scar tissue that cause endometriosis.
What does endometriosis look like?
Broadly there are five categories to how endometriosis presents itself:
- Spots or blisters
- Chocolate or white cysts
- Tissue sticking (adhesions)
We saw some very interesting pictures of the pelvic cavity with explanations of the differences between a normal womb and ovaries and how this looks with endometriosis in its mildest to its most severe form.
These pictures were taken looking down from the navel, and although I had seen these sorts of pictures before they really took shape with the consultant there to explain what we were seeing in context.
We saw how the spots and blistered caused by endometriosis could pepper the inside of a woman, leaving red, white or dark areas.
We also saw more severe pictures of how the endometriosis can cause the organs in that areas to stick together – basically what should have been an open space, with the ovaries, uterus, bowel and fallopean tubes all spaced freely within the cavity could be inflammed and covered in endometriosis. There was old, trapped blood that pretty much engulfed the area like some sort of sinister filling.
The pile up of old blood really did look like melted chocolate – I can see why they call them chocolate cysts.
Found out that it’s possible to diagnose endometriosis using an MRI or ultrasound scan which I wasn’t previously aware of. Laparoscopys very much remain the gold standard for diagnosis, but in the right (experienced) hands it can be recognised in women prior to diagnostic surgery. This could allow a woman with mild endometriosis to only have one surgery to treat the endometriosis, rather than one to diagnose and a further to treat, as there are always risks involved with operations.
Here are some of the questions asked at the end of this session:
I have paraphrased a lot of the answers in all of my Q&A sections to give you a sense of it. These are not completely accurate, I just wanted to give you a sense of the answers provided. Italics are not my words.
Are women with endometriosis more likely to get autoimmune diseases?
Yes, women with endoemetriosis are more likely to develop (and inherent) autoimmune diseases, and vice versa.
What happens if you do nothing to treat endometriosis?
Some women do not experience problems with endometriosis, some do not experience pain or other drawbacks, so in these cases it makes sense not to treat, certainly not to perform surgery or other treatments. Some women progress with endometriosis without much difficulty. It really does depend on the person and their quality of life.
What is the “peak age” of endometriosis?
40-44 is generally where the most endometriosis is present in the body. Not always, again everyone is different, but by that age (and prior to the menopause) women have had the most monthly cycles versus someone who is younger, so more cells have been trapped, and more damage may have been caused, leading to more problems.
What happens if there a woman had a laparoscopy to diagnose endometriosis and evidence of endometriosis found? What’s causing the pain?
This is the million dollar question. So many possibilities. In young teenagers it could simply be painful periods. There could be bowel or bladder problems, or IBS. There are hundreds of reasons why, and there’s no simple answer. Really does need to be worked out based on the age and symptoms of the patient.
Does endometriosis cause thrush?
Is there a link to endometriosis and polycystic ovary syndrome?
How long could it take endometriosis to change from mild to severe? (untreated)
The severity of endometriosis as a disease refers to the amount of inflammation or adhesions in the affected area. It doesn’t always match the severity of the symptoms of the pain caused, so it really does vary from woman to woman. Could be months or years, depends on the patient.
If someone has hormonal treatment to stop periods completely, can endometriosis get worse?
Yes it could get worse, but this is a good way to treat endometriosis, to slow down its growth in combination with surgery. This is a good approach.
How can endometriosis of the lungs be diagnosed?
Quite frequently patients with endometriosis of the lungs will report coughing up blood. If lung endometriosis is suspected without this though then CT scans of the lungs could be performed and identify it that way.
Is endometriosis a disease or a condition?
Endometriosis is both. It is a condition if it is present in a person and it not causing problems. It is a disease if it is present and causing issues to that person.
Would early diagnosis of endometriosis limit or prevent further pain and problems for a woman in the future?
This is difficult, because of the way that endometriosis is diagnosed and treated at the moment. With other diseases (such as cancer) it makes sense to diagnose and treat early. Endometriosis is such an unpredictable disease which presents differently in different people, and since surgery is still largely needed to diagnose there are risks involved, and you increase that risk every time you operate. More operations could mean more risk to the patient so you have to weigh up the need to operate against their quality of life. As we discussed earlier surgery can cause endometriosis too.
Medical treatments & endometriosis pain management
This was a very interesting talk on all the different types of hormonal treatments for endometriosis. I knew a lot of it, but it was interesting to see some of the other treatments that I knew a lot of you have either tried or are trying there too.
When treating women with endometriosis the following is always taken into consideration:
- Fertility plans
- Extent of disease
- Location of disease
We were then talked through all the different hormone treatments given to women with endometriosis, and the associated painkillers. A lot of this talk was stuff I already knew, as you start to become really familiar with the different treatments available during your diagnosis and then treatment of endometriosis. However it was really useful to find out about some of the other treatments (that I know some of you are on) and crucially it gave even more context on why we get the treatments we do.
We learnt how (as mentioned above) sometimes surgery isn’t the first option. Consultants don’t want to open people up if its not totally necessary so they’ll look at factors above and perhaps start someone that particularly young (where endometriosis symptoms haven’t presented yet, perhaps painful periods) with painkillers.
After endometriosis is suspected/confirmed (perhaps prior to or alongside a laparoscopy), many UK-based women will be put on one/a combination of the following treatments:
e.g. paracetamol, diclofenac, ibuprofen, codeine etc.
Combined oral contraceptive
To reduce bleeding during periods (when taken with breaks) or stop them entirely (when taken without breaks).
3-monthly progestogen injections, which often stop periods altogether. Recommended for treatments of six to nine months, with breaks.
Progestogen implant which lasts five years, reducing bleeding and occasionally stopping periods altogether.
Gonadotropin releasing hormone analogues (GnRHa)
Cause a temporary menopause. Usually reserved for more severe endometriosis presence in the body (used for three to six months at a time). Careful use required as it can lead to bone density problems.
We also learnt about the side effects of all the medicines. Essentially there are pros and cons in every treatment, so our existing quality of life, the severity of our endometriosis and the symptoms is causing us is weighed up against the side effects of the treatment.
I have always known this as my doctor and consultant have always made a point to explain all the pros, cons and risks to me at every stage of my treatment. I realise that not everyone is so fortunate. This session was either an affirmation that your course of treatment was taking you on the right path to recovery, or it gave possible new options that some women weren’t aware of. Lots of us left with questions for our consultants, and patient empowerment is a good thing.
Endometriosis and pain management
This was a very interesting, (but sadly brief) talk through the considerations for pain management. We were running out of time for the session and a tired audience needed a break.
However, we heard about how there are some practical ways to live with the pain of endometriosis, with the ultimate aim to be improving a woman’s quality of life.
For example therapy can help to encourage a women to dissociate certain activities with pain. Trying to undo all the rewiring that endometriosis does to our bodies, so that thoughts of moving, bending and well let’s face it – sex – are decoupled from pain and associated with something more pleasurable.
Chronic pain has a risk to become more centralised, tricking the brain into thinking pain has spread to where it may not actually exist, caused by years of pain draining the body.
Being in constant pain annoyingly can also promote more pain, as your muscles tense, spreading the pain further. Pain is a vicious cycle – endometriosis causing pain, and then causing spasms which can spread, even effecting the pelvic floor muscles. It’s important to treat and recognise not just the endometriosis pain but separate and treat that other pain it creates in this horrible chain reaction.
We also learnt about the importance of pacing. Basically not overdoing things. It sounds so obvious, but a big part of pain management is to even our activity so that you’re doing a gradual or moderate amount of activity evenly through the day rather than pushing yourself too hard to do one particular thing. We all know how pushing our tired bodies too far can store up problems for ourselves for later. It’s one of the eternal problems we face.
Here are some of the questions asked at the end of this session:
What do you think about complimentary therapy?
I have my doubts. When they are scrutinised in medical studies they simply don’t stand up to evaluation. There’s little evidence to prove that these treatments work.
What about exercise, is it a good idea if it causes pain?
Moderate, or gentle exercise is good. Remember pacing, even out your exercise so you’re never doing more than you can manage. It’s a bit different for someone else who doesn’t have chronic pain, but resist the urge to go the extra mile.
Work and disability issues
This was a very interesting talk on trying to work with endometriosis. As I found out through chatting to so many people throughout the day lots of women with endometriosis are unable to work, and at the very least many women find it very difficult. It was during this session in particular that I was particularly impressed with how the endometriosis community really sits up to support each other as we heard some tragic stories of women relating their experience and difficulties with life and work. What was most sad was how universally endometriosis was robbing many capable women from the stability that comes with a career.
We were shown a pie chart featuring the results of a UK survey of women with endometriosis. Here are the two stats that stuck in my mind
- 17 per cent lost roles due to endometriosis
- 37 per cent had to alter their work due to endometriosis
We also found out some of the financial costs of endometriosis to the economy (these figures were originally in Euros, but I’ve converted them to Pounds – correct at time of writing).
- £7,728 per year per women due to lost productivity
- £2,511 per year in direct healthcare costs
So it’s really in our employers best interest (after training us and enabling us to do a certain role) to make sure we’re as happy and productive as we can be, despite illness.
UK law only protects four named diseases automatically as a disability. These are cancer, HIV, Multiple Sclerosis and blindness. All other illnesses and diseases are graded by the the experience of the individual because illness can be so subjective and presents its symptoms different in people. So we talked about the recent UK petition to get endometriosis recognise as a disability and how that could be empowering and helpful for some who are really struggling and present difficulties for those people with endometriosis who are managing.
We were asked for examples of work support we had experienced, and we heard some positive stories about employers who had supported their employers through flexible hours, occupational therapists, staggered work after surgery. Through this we received some hope from people who were further along in treatment had gone from being unable to work to being able to return to full-time work. We had a breakout discussion which including topics like, having to move away from beloved career and when to mention illness to an employer.
The overall consensus seemed to be to honest, mention it when you feel comfortable and talk about it with your HR department and line manager as much as you are able. Illness (particularly chronic illness) cannot be held against you at the application stage of a job. An employer is not allowed to ask about sick leave from your references. Existing employers have a duty of care to you as someone they have trained, developed and employed.
We talked about how many of us found talking about illness to our colleagues difficult. There seems to be an even spread of difficulty between male and female line managers. The taboo-like nature of the illness makes it difficult to talk about, but especially so with male colleagues. Either way a real lack of understanding and empathy can develop.
We also discussed how the different types of work we do has a huge part of how well we manage to continue working. Many of those able to adjust worked in offices, but those doing really active roles requiring a lot of energy (such as nurses and teachers) seemed to have the most difficult time with remaining in work. We shared how we felt a sense of responsibility for our work, and how feeling in control while taking quite powerful painkillers made our duty of care to people and work we were looking after that much harder.
What is a disability?
Disability was described as a mental or physical impairment defined by law as something that has a 1) substantial 2) long-term and 3) adverse effect on ability to perform normal day to day activities, whether this is full-time problems or problems that come and go as they please.
Therefore an employer must take reasonable adjustments, in order to do so they as a business needs to consider.
- How illness effects you
- Your role and what adjustments can be practically made
- The business, and the type of work you do.
We heard that it’s not always possible for a business to make adjustments, and this is usually because of the last factor above. The most important aspect I took away from this session was how we were in a room full of people who understood each other. Final advice: always give yourself enough time to recover fully.
Nutrition and diet – what should I eat with endometriosis?
I must admit that I don’t have a lot of interest in changing my diet for endometriosis, but this talk about a low hormone diet for endometriosis was actually very interesting, and had a lot of rational thought behind it.
It was given by a nutritional nurse, who herself had suffered with endometriosis for 30 years, she added that the menopause was a walk in a park by comparison!
There are three main reasons why your diet can make endometriosis worse:
- Hormone imbalances
- Nutritional deficiencies
Then she talked us through the five main stages to a hormone balancing diet:
- Improving your diet
- Supplements and other natural remedies to let control the pain
- Controlling the levels on oestrogen
- Improving the way your liver works (by giving it break)
- Boosting the immune system
Here’s a brief summary of the discussion – there was so much information that I had a job keeping up with it all. Ask me for more information in the comments!
Eat organic where possible
It’s coming down in price and has no pesticides, your body doesn’t need those extra chemicals – it also makes it harder to digest
Use organic dairy if you must eat dairy
Cows in mass-produced farms are artificially kept in calf to produce more milk and this introduces more oestrogen to your diet
Eat natural yoghurt
Unsweetened, add fruit to it if you want something tastier in there
Reduce your intake of saturated fats
Such as butter, cream, margarine – try nut-based butters instead or coconut oil as an alternative
Avoid red meat
But try not to cut it out entirely, aim for once a week as the iron is good for you
Replace saturated fats with unsaturated fats
Such as olive oil, nuts and seeds – also a good source of omega 6
Drink lots of water
Six glasses water a day! Basically try to keep jugs and bottles of water everywhere to remind you.
Have a good start to the day
Warm water with a slice of lemon – try not to sweeten it
Increase fibre intake
Fibre balances hormones by taking a lot of it out of your system
Wean yourself off it slowly to prevent withdrawal symptoms. Caffeine encourages peaks in your energy levels, which only leave you feeling tired and needing another burst.
Try to avoid it entirely for two months of the year if you are able to give your liver a break. People say red wine is good for you, but the good ingredient is in red grape juice so drink that instead. Aim for 1-2 units a week, save as a treat!
Sugar creates insulin and insulin is a factory for oestrogen. Avoid sweeteners too which are actually worse – replace with fruits
Balance blood sugar
You want an even energy level throughout the day rather than peaks and troughs, do this by eating small amounts regularly to keep your energy even – aim for breakfast, snack, lunch, snack, dinner
The seminar ended with three book recommendations if you’d like to know more, they were:
- Take control of your endometriosis by Henrietta Norton
- Reclaim your life by Caroline Levett
- Endometriosis and other pelvic pain by Susan Evans
Laparoscopic surgery for the treatment of endometriosis
This was a really interesting session on the different types of surgical treatment for endometriosis. I actually found it really compelling to see the perspective of the operations I’ve had from the surgeon performing them rather than as a patient.
We learnt about how important a workplace is for a surgeon, how it’s as important that they are comfortable and relaxed when trying to perform surgery as well as the patient. This involves things like a comfortable environment, ergonomic equipment and good training. All meaning better surgery and better results.
We hear about how surgical options for endometriosis have improved in the past decade, made possible by better training for surgeons, growing awareness of the disease (leading to more specialists treating it), and the work that Endometriosis Centres (managed by BSGE) are doing for the treatment of severe endometriosis, by being on the forefront of research and data gathering on the disease and its treatment.
We saw some more photographs during these sessions and they were more graphic than the earlier ones, showing some really severe cases of endometriosis with a lot of the organs melded together, and lots of painful looking red spots.
I’m not in the least bit squeamish, but I have noticed that thinking about surgery (particularly thinking back to the pain of my last laparoscopy) and seeing pictures of it does provoke phantom pains, so I had to neck some painkillers during this session.
However it was really interesting and vitally important to see the disease that we’re fighting in context, in a big picture in front of me. It seemed more tangible somehow, like I was putting a face on a invisible enemy.
We learnt again about how many surgery is considered for patients around their particular circumstances, and how certain (quite extensive) hormonal treatments (such as temporary menopause are considered to make things “less angry” for surgery. We often miss out on this sort of context as a patient, hearing the detailed rationality of treatment plans was a comfort.
Here are some of the questions asked at the end of this session:
Ablation and incision are both used in surgery – which is better?
Ablation basically means destroy and incision cut away. Generally incision is better, but it depends on how deep the endometriosis is. It’s useful to cut it away to see how deep it goes. To remove it, see underneath and size it up. If you just destroy you don’t always see how far it goes.
How many laparoscopies can a woman have?
There isn’t really a limit. The fewer amount of operations a woman has the better though, there is less risk to her that way.
I am due to have surgery, how quickly will it grow back?
Depends on the scar tissue there and if it is causing pain. Often scar tissue may not be the cause of pain. That said endometriosis growth is unpredictable and depends on the other treatments the woman is receiving. If you take it all out there are generally better results many months or years later. Leave any and there’s a higher chance it will grow back. So it’s variable. Months in some women, years in some, possible recovery in others.
What are adhesions?
Something sticking together, could be organs or the pelvic wall, but not everyone experiences pain from this.
Is surgery the right treatment for mild endometriosis?
Yes, hopefully there wouldn’t be a second time for surgery. Hopefully your surgeon will be prepared enough to diagnose and treat at the same time, while discussing the risks to you.
Cutting or laser which is better?
Depends entirely on the surgeon and the experience of the equipment. It’s best for the surgeon to use what they are most comfortable using, you’ll get the best results that way.
What’s better for endometriosis treatment? Open surgery or keyhole?
Keyhole is better. You’re working with a magnified picture and an HD camera. You can see better. Also you’re working in a closed cavity which when you’re used to working like this makes it much easier to see. Also there is less risk to the patient and quicker patient recovery.
How do you refer to endometriosis centres you mentioned?
Your GP needs to refer you. Go to the BSGE website, look at the list of centres and find the one nearest. Generally only the worst cases are considered to get the most information possible about the extremes of endometriosis. We’ll give more opportunities to other patients as a result from the data we gather. We’ll improve treatment more broadly.
Can I ask to be treated by my choice of consultant?
On the NHS you cannot ask for who to see, you can can ask to be referred to a place of your choice near you. You cannot specify who treats you. Different hospitals manage referrals in different ways, so it may not the the same everywhere, but you should be offered a list of places for referral. However there are changes coming to the NHS soon, and we’ll have more information on the process as a result in the coming months.
Endometriosis UK – the day in closing
Endometriosis UK are a fantastic charity really punching above their weight. It’s due to their hard work and tenacity that I was even able to experience such a supportive and enjoyable day. I really encourage you come along to the next one and support them via membership if you can.
They also have an endometriosis awareness week in March (4th-10th) which we should all be finding a way to take part in.
This illness has stopped me from living the life I want to live, unfortunately I am just existing.
This last talk reminded us all of the background of why we were there that day, to raise awareness of endometriosis, to help others who are finding things difficult. To make things better for anyone suffering because of it. Endometriosis is not life threatening, but it is life destroying.
Things are improving, but there is still much more we can do for ourselves and others with this illness. The messages I took away from the day was the following.
That endometriosis is indiscriminate – it affects all races, all social backgrounds, partners, friends and sufferers alike. There were lots of men at the information day, and I was comforted by the presence of so many friends, partners and loved ones of sufferers taking an interest in their care.
Not everyone experiences endometriosis in the same way, but Endometriosis UK are determined that no woman should experience it alone. I encourage you to come along to the next information day. Regardless a huge thank you to the Endometriosis UK staff and volunteers (and all the lovely people that attended) for a remarkable and humbling day.
I wasn’t able to attend this day due to distance and cost so thank you for this post. Good to find out what is going on for endo awareness. Sadly, there is very little support where I live in Northern Ireland. Endo UK covers all of the UK but there is nothing for us over here.
I was really interested in the diet aspects. I’ve discovered things that work and don’t work for me but have never followed any guidelines or anything. Have you found anything that works particularly well for you?
Thanks for replying – really good to know you’ve found it useful. Sorry to hear about the situation is Northern Ireland – have you asked Endometriosis UK about more support for you? I know that all of their support groups are run by volunteers so if there’s not enough support in your area you could always setup your own support group with help from them.
I’ve also attended a couple of their virtual support groups which I’d also really recommend if you’re unable to find any support near you. It’s the same for me, I live too far away from a support group so the information day was really important.
If I am honest I have not been able to find anything that really helps me diet wise, but I’m not keen on changing my diet because I eat pretty well anyway and don’t drink, smoke or drink very much caffeine.
However if it’s of help I can email you a little bit more information on the dietary stuff that I picked up on the day. I didn’t want to republish information that was someone else’s work, but I can scan it and send it to you.
Definitely useful. It’s so important to get people talking about this and sharing information. We have a volunteer-led support group in Belfast and I’ve heard of the virtual support groups but haven’t been involved in one yet. I might give it a go.
My options are pretty limited as I have a very sensitive stomach and since my last op I’ve had very little appetite but it always interests me to find out what others are doing. I would never have considered drinking tea as a source of help until I saw something about it helping relax tensed muscles and aiding digestion. I wouldn’t be without my peppermint tea now but I know that it doesn’t work for some people.
Thanks again for your post, I’m trying little by little to research things but having it all in one handy post is a real time-saver!
Thank you so much for posting the information on Endo UK Awareness! You did a great job of taking your notes and being able to let us know the information. It helped me out alot. I have been suffering with Endo for 20 yrs. and it is nice to know that we are not alone out here.
You’re most welcome. I have a few more mistakes to finish and I couple more pictures to put in so keep checking back and I’ll improve it as time goes on.
I actually got out a notepad and took notes just reading this – I plan to do a lot more research on these things and hopefully blog about them too! Thank you SO MUCH for sharing this, it was extremely informative. I’ll be sharing this post on facebook and twitter for now. I have never heard of anything even similar to this here in the states, which is rather depressing.
You’re so welcome – the talks were very very interesting and I learnt a great deal about the illness. In hindsight I will be bolder and take more pictures next time!
I’m definitely going to go again!
hi Michelle I found the info on the UK endo awareness very interesting I did not realize that such a support group existed. I tune into endohope on your site when I get a spare moment. I love reading about other peoples experiences I find myself saying that’s me I feel the same it makes me feel I am not alone. I love to go to one of the seminars but live to far away and also holding down a full time job but knowing I can catch up on your site gives me lots of reassurance and helps me to lead a normal life as possible. well done Michelle I am sure you have made a big difference to many peoples lives you certainly have made me understand my endo more than my GP thanks again will stay in touch Tina.
Thank you Tina. Positive comments about this website help to give me the energy to keep going and keep updating. I am going to be attending the next endometriosis info day next month in Coventry, and I will do my best to write the information from that day up also.
I’m so pleased that you’re able to work full-time with this illness that’s no mean feat, and I know how difficult that is! 🙂