Endometriosis UK information day report 2014

A plushy womb

Last Saturday I attended the yearly information day about endometriosis hosted by Endometriosis UK. The information day was an opportunity to learn more about the latest developments in endometriosis trearment and find out the latest advice from endometriosis consultants and patients.

As ever it was a neat opportunity to meet and talk to lots of other women with endometriosis. This event couldn’t have happened without Endometriosis UK, so if you were enable to come to this event, please consider coming along next year or supporting the charity through donation or membership.

Please note

I’ve written up an account of the day as completely as I can, just as I did for the 2013 information day and the 2012 information day. Naturally it doesn’t compare to actually being there.

I’ve had to paraphrase some of what the speakers said (I couldn’t always hear everything), so what is written here does not represent the views of the speakers or Endometriosis UK. I apologise for any inadvertent mistakes.

Always discuss any changes to your treatment plans with your doctor and consultant as they know the best treatment for your personal circumstances.

With that in mind, here’s what we learnt on the day.

The day was broken up into an agenda with a choice of sessions, so I attended the following:

Introduction to Endometriosis UK

We started with an introduction to Endometriosis UK with the new CEO Jane Hudson Jones. We learnt the goals of the charity; to offer empathy, empowerment while being evidence-based with ease of access to support.

We got a outline of the team that works for the charity and some evidence of their work which includes; 31 support groups 17 online support groups and a helpline with 17 volunteers.

7.5 years is still the average for diagnosis, so a key goal is to reduce this figure for women with endometriosis, and to improve the treatment and care of women who already have it.

With that in mind, the charity is working with the RCOG to adapt a course for medical students including a module on menstrual disorders.

Preempt trial leaflet

We also learnt about the partner research projects that Endometriosis UK are involved in, including:

There a lots of different ways to help the charity, you can become a member, make a donation, volunteer or fundraise. Have a look and see what you can do. We heard about the fundraising efforts done this year too, like the pink pants challenge and the all the mad pants tea parties that have taken place.

Endometriosis UK are also working with the department of health to get health funding for regional volunteer development. There’s also the the work they’re doing with the Royal College of Nurses, where they hope to create a leaflet about endometriosis for nurses to refer to.

Royal Surrey Hospital will be the first in the country to put together an accredited course for (through the university) with a module called “caring for women with endometriosis”.

Endometriosis UK are also continuing work with the Scottish Parliament to get improved care for women with endometriosis considered in legislature. They’ll do their best to push anything they progress in Scotland out to the rest of the UK.

They also want to do their best to improve their efficiency internally, getting the best out of people and improving what they do now with the resources they have now while still maintaining diversity.

The aims for this information day was to provide us with high quality information to increase our understanding as patients, so we can share information with others and feel able to ask questions with the people running the sessions.


Endometriosis: anatomy, presentation, diagnosis and symptoms 

For everyone new to the illness we heard the definition of what endometriosis is and how it can effect the pelvic cavity. It was nice to see a mention of adenomyosis, which is a similar condition, except it’s the womb lining grows into the muscle of the womb itself rather than outside it.

Endometriosis is common, it effects 5-10% of women, and mostly affects them in their middle age years. It is rare for endometriosis to be present before periods have started.

The risk factors are:

  • Not getting pregnant
  • Women with short cycles
  • Heavy menstrual bleeding
  • Peaks at age 40 to 44
  • If you have family history of endometriosis.

The risk reducing factors include being on the combined oral contraceptive pill.

There may be some immunological factors to why some women get endometriosis. We’re not sure of the reason, but there must be a genetic contribution. This means that endometriosis commonly doesn’t always make sense. We don’t have the same symptoms from woman to woman and we don’t know why some women get it and some don’t.

It could be that women with endometriosis have a more sensitive immune system, causing the difficultly that some women have. This is because it is normal for blood to gather in the pelvic cavity (to escape through the fallopian tubes), but something about endometriosis patients means our systems react more and create the right sort of climate for endometriosis to grow.

It can very in severity, with mild symptoms meaning lots of spots all over the place. Severe cases can mean the complete distortion of the pelvic cavity, with organs sticking together. In that regard endometriosis is rare in the sense that the pain or symptoms don’t always relate to severity. You can have a mild case where the patient is in agony, and a severe case where they don’t feel anything at all.

There are also cases that develop after surgery, for example a caesarian section, where endometriosis can start and the symptoms for the patient is pain around the surgical scar.

We where then shown some photographs of what endometriosis looks like. In a normal pelvic structure (which is rather like a basin) the womb should be in front and the fallopian tubes reach around the back of the womb with the ovaries behind.

Endometriosis on pelvic MRIs

What does it look like? 

  • Superficial spots
  • chocolate cyst (endometriomas)
  • deeper scarring (fibrosis)
  • nodules
  • organ tissue sticking to each other (adhesions)
  • Bilateral endometriomias “kissing ovaries”.

Then the keyhole surgery process (laparoscopy) was explained, where the patient is put under a general anaesthetic, and three to four small incisions are made (one in the belly button) and gas is used to inflate the abdomen so the consultant has space to work using a laparoscope (small tube with a light source a camera). Then the endometriosis is excised using small instruments. The consultant may also use a instrument in the womb to manipulate it and move it around as needed, to give them further room to work.

Then we were shown in an image of endometriosis on an ovary. Endometriosis usually looks like a black spot in the tissue, but how it looks can also be very varied, it doesn’t always look like this but this is perhaps the most common presentation.

The objective of the surgeon operating is to identify the endometriosis and remove it, we also saw a picture of what scarring (fibrosis) looks like and a picture of a stage four case. It was also interesting to hear why we often get endometriosis in the Pouch of Douglas, this is because it is the lowest dependent point below the uterus, where most of the pelvic blood can settle.

Where can endometriosis be located?

  • Anywhere apart from the spleen
  • ovaries
  • surface of pelvic organs
  • between bowel and vagina
  • appendix
  • bladder
  • navel
  • caesarian section scars etc.

Symptoms

  • Painful periods
  • painful intercourse
  • pain with bowel motions
  • constant pelvic pain
  • infertility
  • fatigue
  • monthly rectal bleeding
  • monthly blood in urine

The consultant spoke at some length about using scans for endometriosis diagnosis, which was fascinating. I’d always heard that laparoscopy is the gold standard for diagnosis (this is part of the NICE guidelines for our care). However this consultant had extensive experience of examining endometriosis on both MRI scans and trans-vaginal scans. The idea was to reduce the amount of invasive surgery so that laparoscopies can be mainly used for treatment and not diagnosis.

Endometriosis on transvaginal scan

They did state that scans are useful in severe cases (stage 4), and less useful in mild cases. Seeing endometriosis on any type of scan requires specialist training and a lot of experience it may not be something that a lot of general radiographers can do. They hoped that this knowledge (mainly practised in specialist endometriosis centres) could be spread more widely and become more normal.

Physical examinations are not an ideal way to diagnose either, as the consultant may not be able to feel anything and this can be painful for the patient. So patient feedback, symptoms and medical history is often more useful.

Treatment options vary between medication and surgical routes, but ultimately should be based on your needs and desires and whether or not you plan to start a family.

Endometriosis is not a condition that’s going to disappear after treatment, reoccurrences are quite common and this specialist suggested that all the patients in the room should be treated by a dedicated endometriosis team.

Medication treatments can include:

  • NSAIDs
  • combined oral contraceptives (COCs)
  • progestins
  • GnRHa analogues (injections)
  • Mirena IUS (80-90% reduced periods and in 15% of patients it stops periods completely).
  • Fertility treatment (surgery and then IVF)

The mirena

The advice offered was if you find a contraceptive pill that works for you, and you don’t have many side effects, stick with it. For example if you get migraines with auras or any other neurological problems, you shouldn’t just put up with these symptoms, you should get them looked at. There might be other options for you.

GnRHa (injections) treat endometriosis by creating a “temporary menopause”. It was stressed that you shouldn’t take them for a long time without taking Hormone Replacement Therapy (HRT) as they can cause bone density problems. I recommended duration to start with would be three to six months.

Pain management teams should involve:

  • A multi disciplinary team
  • pain specialist
  • psychologists
  • nurses
  • occupational health

There are treatment options without medication too, such as:

  • Physiotherapy
  • Cognitive Behavioural Therapy (CBT)
  • exercise
  • pain management

Endometriosis is a very diverse disease effecting people in different ways, so a pain management team becomes extremely useful, working out the specific needs of the patient, and this team-led approach can help to manage the long term pain caused.

We finished this session by receiving a reminder about the Pre-empt clinical trial that we might want to take part of. We don’t scientifically what causes endometriosis to come back, so this trial aims to find out a bit more about this. By seeing how patients get on following surgery with four different treatments. This is a three year questionnaire to find out this information.

Please consider coming onto the trial if you’re offered it at your local hospital, as without medical science we can’t beat this disease.


Treatments of endometriosis – Q&A

Last year you mentioned you were working on a blood test for endometriosis, what’s the progress on this?

Yes, we have approximately ~149 women in trial. This is a study of protein analysis to find out if there’s something distinctive in the blood of women with endometriosis. While this work could be promising, we also need to be aware that this work should be a fine balance, we don’t want to over diagnose endometriosis or under diagnose it.

What percentage of women are still pain after a hysterectomy?

Not a high percentage. This is a hard question to answer but to give you an idea I’d estimate up to 30%. After surgery in general it’s not uncommon to still experience with pain when the problem has been removed, because of the pain pathways to the brain that have already been long established.

Is the pre-empt study open to all age groups?

Yes, as long as you’re not planning to conceive, it’s open to all.

Do you have a counsellor available in your specialist endometriosis team?

We have access to one, and other non-physical medical treatments, but not one as part of the team.

What about the mini pill for treating endometriosis?

Yes, that’s a progestin pill that I mentioned in the treatments before.

What advice would you give to someone who does not have access to or does not live near a specialist endometriosis centre?

We’re lucky in the UK in that they’re dotted around the country fairly evenly. The advice I’d give you is to go to your doctor and ask. Take some information along about your nearest centre, and go armed with information to take to your GP. As you are an NHS patient you have the right to ask for treatments appropriate for your care. Your GP may want want to refer you, but you do have rights to treatment.

Can you take the mini pill continuously?

Yes.

If you are taking GRNHa analogues, can you take it for longer than 3-6 months if you’re on HRT?

Yes, you should be able to continue, as long as you take HRT this should be okay. Sometimes GPs don’t like this because of the bone density risk. If you’re experiencing pushback, ask you consultant to get in touch with your GP to help relieve their concerns.

Do you see patients on a routine basis at your endometriosis centre?

Yes, but this is a balancing act. It’s our job to balance resource and need.

The process in our centre would be to organise an ultrasound scan with a specialist firstly, then see a nurse that same day and discuss your symptoms and quality of life with them. The nurses key and you can develop a close relationship with them. You keep in contact with us through the nurses, and they are available when you need them for advice. We space out routine appointments when we’ve gotten you to a place where you’re comfortable, and we offer our patients an open appointment should they need to return in the future.

Ultimately, we want to get the patient to a point where they are comfortable, but they can of course return.

You mentioned stages, does this mean endometriosis is a progressive disease?

Stages have come from the models that they use in America, it’s hard to explain how this works, but basically we count up each lesion and based on the size/severity they have a value and we add it all up to a total, but broadly:

  • Stage 1 – peritoneum effected
  • Stage 2 – effecting ovaries and endometriomas of up to 2cm
  • Stage 3 – 3 cm endometriomas
  • Stage 4 – starting to stick things together (adhesions) 

Can you give any information on the occurrence of endometriosis? How much reoccurrence is regrowth and how much is due to endometriosis is being left in our bodies, perhaps endometriosis that cannot be seen?

If endometriosis is left when you operate or even if you remove it completely it can come back, it doesn’t necessarily mean that endometriosis is a progressive disease.

Bottom line, why it continues to be there doesn’t matter to the patient, their symptoms and pain is what matters to them, so we choose to focus on that.


Other treatments & pain management

The was a really fun and funny talk about pain management and why we experience pain. I’m not quite sure how she got such a tricky subject to be funny, but she did! I won’t be able to get that great tone across, so I’ll stick to the facts 🙂

This was led by a specialist in endometriosis management and care who was based in Worthing, and it started off with a quiz with prizes, she asked what the scientific name was for:

  • painful periods
  • heavy periods
  • colon pain

Of course the answers are:

  • dysmenorrhoea
  • menorrhagia
  • I can’t remember what the name for this is, so I’d appreciate someone leaving a comment 🙂

This consultant specialised in pain management, but also did surgery, she pointed out that 1 in 3 women with endometriosis don’t experience any pain at all.

And pain means that:

  • 7.8 million in UK are effected (2012)
  • accounts for one in six GP visits
  • training in chronic pain for doctors/consultants is just 13 hours (and gynaecologists don’t receive any!)

There’s a misconception among some people that pain is “not a big deal” and “it doesn’t kill you” and can be “fixed by pills”, but pain is very important to the patient, and although it’s not-life threatening, it has a huge impact on that person.

She mentioned if you’re in a lot of pain because of chronic illness – don’t go to A&E – they don’t know how to treat that sort of pain, they’re equipped to do with acute pain, and won’t understand the complexity of your illness.

Getting a diagnosis for the pain can take a long time, as there are a lot of things to rule out, and your doctor has to send you for all sorts of tests. While you wait for the answers your pain threshold is changing. Pain threshold is all about experience, if you feel pain frequently, it takes less pain over time for your pain response to be started, it create a pain repetition. You can handle more things with pain, but it also takes less than a regular person for your pain to start.

Pain threshold graph

This means the endorphins (your body’s natural pain killer) are not produced as well in people with long term illness, or the amount you can create is reduced. This is why doctors are so keen for you to exercise, because exercise is a reliable way to generate natural pain relief.

Some ideas for this are cycling (which supports your body weight) and swimming which is a low impact exercise.

Exercise gives you strength and makes you confident. Even if you don’t feel that you can manage exercise, research shows that if you gradually increase the amount of exercise you do, it reduces pain and the amount of tablets you have to take.

How to manage life with endometriosis 

You can do this with the Adress system:

How to manage life with endometriosis

A – achieving small goals
D – balanced diet
R – relationships and input
E – exercise and other extras (acupuncture, yoga, massage, relaxation techniques.
SS – solving sleep issues.

This is important to do, because although we operate and remove endometriosis as the last talk said, there are well known pathways in your system that keep going even when the issue is removed (think about phantom limb pain, and how people can feel like their arms are still there, even when they’re removed).

There are three main treatments for endometriosis

  • Reducing the pain and bleeding
  • Suppressing ovulation
  • bladder and bowel care.

Let’s cover each of them in turn.

Pain and bleeding

Wow uterus, sorry for not getting you pregnant. No need to throw a temper tantrum

Periods can cause symptoms in itself, and this is quite normal because of the hormonal changes, this can mean symptoms and diarrhoea, so it’s not that surprising that we experience both of these symptoms very frequently with endometriosis.

First thing we’ll do is look at what pain relievers to give you, we’ll normally start with anti-inflammatories (like ibuprofen and diclofenac) they’re the logical place to start. Although some asthmatics cannot take this type of medicine).

All pain killers can have side effects, and some of the stronger opioids can lead to people being dependent on them. We want to find something of you that causes fewer symptoms than the pain itself!

We’ll also try to relax the spasms you can experience in your bowels, with muscle relaxants like buscopan, which you can buy over the counter or get on prescription.

Suppressing ovulation 

Endometriosis loves young women, and it loves oestrogen. It’s rare to see new cases after about the age of 45.

Treatments include:

  • Oral contraceptives
  • Progesterone
  • GNRH analogues
  • aromatase (an enzyme inhibitor)

The last one is because endometriosis can create it own oestrogen (from our own testosterone) using an enzyme called aromatase. There are medicines to stop this, but they’re really strong. These drugs are also capable of causing bone issues and they’re same drug as used in testicular cancer. So you’d need to take HRT to level out your bone condition.

At this point she had a number of knitted props inside a mock pelvic bone, to show how packed the area was and how much was in there (urine systems, bowel, sexual organs). All it takes is for one thing to play up there to make the whole area uncomfortable and flare up other symptoms.

Common problems are:

  • 60% of endometriosis patients also have endometriomas
  • Extremely common to have bad constipation too (she showed the bowel as it should be (a small sock) and swollen up as a big scarf).

The bowel flaring up, and the other pains and spasms we have in that area explains the “pregnant” bloated belly that so many of us have to deal with.

Bowel care

We’d treat issues with the bowel with:

  • Bulking agents (and things like bran cereal)
  • softners
  • stimulants
  • ormoties (lactulatose) –

The last one is a high sugar sugar, which ferments and can create a lot of gas this is itself can cause lots of discomfort, so try to avoid this option. It’s useful in pregnancy, as it’s one of the few bowel treatments that can be safety given to women while pregnant.

Some things you can try is to avoid foods on the high FODMAP list, and being mindful of the types of food you eat and avoiding the things that you know will cause you problems.

High FODMAP list

Bladder care 

Another important issue with treating endometriosis, the symptoms of bladder issues are:

  • Burning sensation, irritation when passing urine
  • cramps (can use buscopan)
  • urine retention

A common thing that many women have with endometriosis is interstitial cystitis. Your bladder gets inflamed and it’s commonly treated with antibiotics, but this isn’t an infection, it’s more like inflammation.

Sometimes you can’t pass urine, because your bladder is overfilled and will make the muscle holding the urine in spasm, and then it can’t open properly and let you pass water. For this we actually suggest self catheterisation (putting a tube about the size of a tampon into the vagina to help you relieve your bladder and go to the bathroom. It can be done by nurses and doctors, but we recommend teaching our patients how to do it, because then it’s less stressful, and there’s less chance for infection. Finding your own anatomy is always the better way.

A self catheter

You can also get sachets to put in water, that you drink and can help reduce the acidity of your urine that will relieve the irritation in your bladder. You can buy these from most health food shops.

What pain relief would you suggest for endometriosis on your diaphragm? 

That’s unfortunate, that’s a really tricky type of pain to treat. The only real pain relief is to remove the endometriosis that’s causing it. Normally it’s better not to remove at all, so only consider this if you can’t manage.

Self catheterisation sounds really scary, can you really do it yourself? 

It’s really not a big deal once you know how to do it. You can buy pre-sanitised tubes to take around in your handbag and it’s much easier to put them in yourself. Think about how you you learn to put in a tampon.

My mirena is causing a lot of pain, how long until my body accepts it? 

The Mirena is a good solution for endometriosis, and it gets used to treat lots of things because of it. We don’t know why it causes so much pain for some women but might be because your body regards it as a foreign element. Especially for women with adenomyosis. If your body fights against it too much try using something else. I’d recommend giving it a good trial of six months to give it the time to see if it gives you decent pain relief.

Why this length of time for the mirena?

It does take some time for your body to adjust to the progesterone. My experience is that at least six months is a good test. So do try and persevere for at least that long. If there’s no change in your symptoms past six months there may not be much benefit for you.

My mirena is still making me bleed two years in, should I take it out? 

It depends. It may be good for your endometriosis pain, but in your case it may be thinning of lining of your womb so much that you can bleeding too much. Depends on your situation, if your bleeding is manageable, and the mirena takes away some of the pain perhaps stick with it. If there’s no pain improvement, it might be worth stopping it.

Is there any way to reduce inflammation with bladder issues?

There isn’t really a way to treat the inflammation of the bladder. You mentioned you were on two different antibiotics, so I’d switch between the two antibiotics you’re on once every week, and keep cycling them as you do now.


Managing symptoms and developing coping strategies

In the afternoon sessions (after lunch) we got to choose two sessions out of a total of four. The sessions I did not attend were on fertility and working with endometriosis, instead I went to the sessions on managing symptoms and managing relationships – a psycho-sexual approach. If you want to read about the working with endometriosis session there’s a great overview on this site.

This was a session lead by support team leader and volunteers. It was about sharing our ideas and experiences about what we find helps us manage with endometriosis.

Information sharing we learnt, was extremely important because some things work for one person but don’t work for others. We all experience things differently don’t we?

This session was about group work, so we formed groups of about five and discussed among ourselves, and then shared them with the whole of the room once we’d finished.

How do we manage our endometriosis symptoms?

  • Pain management (Using things like the pain toolkit)
  • Start a website to detail your experience
  • Lifestyle changes
  • Yoga & meditation
  • TENS machine
  • Acceptance
  • Distraction from pain
  • Acti pad (pain relief) apparently sold them in Boots and online
  • Kneeling chairs and daylight lamps
  • Pain diary
  • Research online
  • Having a supportive partner (and pet!)
  • Myofacial massage
  • Diet changes
  • Hot bath using epsom salts, dead sea salts
  • Reflexology
  • Swimming
  • Naps
  • Laughter
  • Heat therapy
  • Medication
  • Walking
  • Cycling

We’d tended to have a little discussion about some of the points raised too. For example your body can get used to painkillers and medication, so it’s important to find other ways to copy too.

On changing diet (e.g. gluten free and diary free). The advice was to find your own level for what to change and to introduce changes to your diet gradually so it didn’t become too challenging for yourself (or too expensive).

Working with endometriosis

This was a big topic, the group leader asked if anyone has had to change jobs or amend how they worked because of endometriosis. A number of people had mentioned having to change their careers to do something that worked better with endometriosis. For example one person who had a quite active job had moved to a desk role within the same company. It was nice to hear examples of supportive employers.

At least two women talked about becoming self employed, and how endometriosis had caused them to adjust their career ambitions (sometimes for the better) as they now received for flexibility (as they were their own boss).

Ultimately we heard that a big part of working with endometriosis is learning to say “no” to avoid overdoing things and exhaustion, and working full time with this illness in particular means knowing and understand what you can and can’t do.

The group leader reminded us that we have rights under UK law, and your employer should be able to (depending on the type of work that you do) to assist you to remain in work, and perhaps have better flexibility for you when it comes to taking time off. We were reminded that wherever we worked, we had a right to discuss options with our HR manager or line manager confidentially.

Living at home

Then we were asked what tips we used for managing at home. A number of people mentioned that asking for help had become more important, and how we shouldn’t rule out paying for help too (for helping with household chores, like ironing as one lady suggested).

One lady mentioned how lowering expectations was important, you just have to let go of the higher standards you had and appreciate you can’t do as much as you once did.

Stepping back from life back and finding time to relax was mentioned as being really important too. One woman shared the story of how she had taught her young child that she needed to lie down and have quiet time now and again.

This was an example of acceptance, you need to get to a point where you can start to be open about your illness and how it affects you. Sometimes, this issue can be quite hard, for example when do you mention it when you’re dating?

Another lady mentioned that blogging about her experience had helped her greatly, she could write down all her thought and feelings and knowing she’d said it somewhere relax a bit more.

There were also some tips for the managing energy and fatigue, such as using light alarm clock to reduce the amount of grogginess you feel in the morning, or evening and kneeling chairs, which can encourage good and less painful posture while you work.


Endometriosis and relationships – a psychosexual approach

The next section was about relationships, and the foundation of relationships, this was led by a specialist nurse in endometriosis.

The nurse started by introducing herself and expanding on some of the points raised in the earlier sessions. For example, she mentioned that the grading system for endometriosis had originally come from the standards used for cancer and it was likely that eventually the staging may be gotten rid of an replaced with two categories; endometriosis and severe endometriosis.

Because of the topic of the sessions, and it being about communication, we broke out into groups and we had to speak to the person next to us, find out why they were here, learn a bit about them, find out if they had endometriosis and how long they’d had it, then they’d introduce us to the room and vice versa.

The point of this was to indicate that we all have similar stokes, sharing information and not had much chance to really relax and chat up until now.

The nurse explained that she practises mainly in group work, but also does work one to one. Basically living with endometriosis means increasing the awareness of those around you by working together as a team.

She explained her long term goal is to help you figure out the best treatment and care pathway for your individual circumstances.

She also talked about how years of illness had made some of the women she knew with endometriosis, afraid to look at or touch their bodies, the emotional impact of this disease has a huge impact and often doesn’t get as much care and time as the physical symptoms.

She also suggested that there are some new thoughts about how endometriosis starts and where it comes from typically retrograde menstruation is suggested as a possible cause, but it might be that all women are born with the cells that can leads to endometriosis and it goes into remission for most women, but gets bad for some women, however we really don’t know.

We then went back to our group to discuss:

How does endometriosis effect your life and relationships? 

We had a big brainstorm of a lot of issues, here’s what we came up with. 

  • It reduces your independence
  • Its hard for people to understand when you’re in pain all the time
  • Can be extremely hard to talk to your partner about it
  • It’s hard to listen to others with children
  • Guilt is a huge factor – for lots of reasons
  • We work hard trying not to be a victim, but sometimes we are
  • Social obligations are hard
  • Being tired all the time – can’t do what you want to, can’t function
  • There are questions from others about “why are you not better?”
  • Can make your very irritable and when makes you annoyed with yourself too, all because you’re in pain
  • It’s import to adapt to your disease and accepting and find a way to live
  • Explaining endometriosis – “what’s that?” I haven’t got half an hour to explain it (we wish we could hand out flashcards)
  • Feeling very angry at a lot of things (and why wouldn’t you be?)
  • Friendships falling to the wayside so people stop asking
  • Sex – hard with pain and fatigue – and theres little/no desire to
  • Feeling unattractive – lots of us have a bad body image
  • When you’re dating – when do you bring the issue up?
  • When you’re a parent you experience guilt about not being the parent that you should be
  • Your partner frequently feels powerless, not being able to do anything when you’re in pain
  • There are some positives – endometriosis can bring you and your partner closer together
  • Endometriosis takes away your independence – harder to manage jobs, relationships and social commitments
  • A lack of understanding from others – we’re not cured, there is no cure and this is hard for people to accept
  • Unable to talk about it to most people so it can make you feel very isolated
  • Frustration and stress are there too as equally important emotions
  • Can’t be yourself with your friends as you’re always in pain
  • You can even become jealous of your friends – because they’re able to live normally
  • There’s guilt about taking time off when you’re already taking a lot of pain

Towards the end of the session we talked about certain issues as a group, and one point made was the difficulty of male bosses and talking about illness to them. Although the nurse leading the session fed back that a lot of people found female bosses worse, precisely because they equated it to their (normal) period pain and their lack of understanding was often more hurtful.

Psychosexual aspects of endometriosis leaflet

There were a few parents at the information day too, and they talked about their guilt about not being able to help their child when they’re in pain. One women talked about how when she told her mother she couldn’t understand what she’d done wrong, as she never smoked or drank while she was carrying her.

This illness effects your partner too, it becomes all consuming for you and your partner can feel helpless. One partner mentioned that the invisibility of the illness was very hard, people don’t understand how poorly his wife is.

An earlier session talked about changing diet, but one partner pointed out that eating well is hard to do and much more expensive. Any change in diet for an endometriosis patient ends up effecting them too. It’s also really hard for us as patients to have the energy to eat well, we often don’t have the energy to cook and prepare a meal from scratch.

A number of people talked about the uncertainty of this disease how it was inconsistent and hard to plan around. This was also a issue in new relationships and life becomes about managing conflating expectations.

There are also still a lot of myths that exist, even as recently as this year. One woman pointed out that one doctor suggested that she should get pregnant as a form of treatment. The nurse also mentioned depression, and how it’s important to find time out of the every day to spend time with your partner or friends and talk about things, as your emotions are important too.

Wrapping up the day 

We finished the day with a big thank you to the Endometriosis UK staff and volunteers for their hard work. They really do work incredibly hard for us, whether it’s leading support groups, helping on the helpline, organising and taking part in fundraising and lobbying for our care at a local and national level.

A great big thank you to Endometriosis UK for another fantastic information day.

Don’t forget you can read my report on the 2012 information day and the 2013 information day too – they all have different topics and focuses and you can skip to the bits you want to read about.

Thanks for reading.

Advertisements

About endohope

My name is Michelle B. I've lived with endometriosis for eight years and Joint Hypermobility Syndrome for four. Trying to live and work with both illnesses as best I can.

17 responses to “Endometriosis UK information day report 2014

  1. Pingback: I attended the Endometriosis UK 2014 information day, and this is what I learned. | The Endo The World?

  2. sarah

    so helpful and encouraging!! Thanks for sharing!

  3. marie

    thanks for writing this up i found out more useful information .dont know where i would be with out all your info probable wondering why nothing makes sence ,so great big thanks .

  4. Thanks for sharing this, I really appreciate it as there is a lot we can take away from it.

  5. Thankyou for this, loads of great information, wish I’d been there x

  6. Thank you for writing this up again, I wasn’t able to be there this year so it’s great to read all about it. Good job!

  7. KateinUS

    Thank you so much. I’m having a recurrence of symptoms a year after most recent surgery, and reading about others’ strategies for coping helps a lot.

  8. Magda

    Thank you very much for sharing your account!

  9. Nicky

    Really well written & covered lots of different topics. Nice to hear people’s views & that I’m not the only one suffering. Thank you.

  10. Reblogged this on Endometriosis Pain and commented:
    I will try and attend this next year, I was going to go this year but I was too unwell with my pregnancy. Such fantastic information.

Leave a reply if you found this helpful

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Endohope

My name is Michelle and I've been living and working with endometriosis for seven years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease. You can read more about my story on my about me page.

Twitter

  • Someone gave me one of these today to help with pain. It's really helpful. https://t.co/Vm0TYLPhfx 7 hours ago
  • Unfortunately it looks as though the TFL "please offer me a seat" badge can only be applied for if you live in London. I'm applying anyway. 22 hours ago
  • RT @BBCWomansHour: 📻Now: Do you look healthy but have pain from a 'hidden' illness? A new badge to wear on public transport may help https:… 1 day ago
%d bloggers like this: