Endometriosis UK information day – October 2013

I attended my second Endometriosis UK information day a little while ago in Coventry, and despite arriving late, I did my best to write up a detailed account of the day and an overview of the information discussed at all of the seminars and discussion groups.

Endometriosis UK is the leading endometriosis charity in this country (and the host to these information days), and they normally hold one information day a year explaining their work and progress, as well as providing tons of information from consultants, pain specialists, GPs and nurses. I was pleased to see that this year they’re continuing their work to invite nurses and other healthcare professionals to the day to better their understanding of endometriosis and its impact on women.

If you’re interested, I also attended the last the same information day last year, and wrote up an account of that day too. Some of the information repeats from one year to another so I won’t spend too much time repeating that and I’ll highlight what I’ve written about previously.

I did miss the introduction from Endometriosis UK, and the report on the findings of the UK-based studies into endometriosis and its effects. I have provided links to more information (either my own, or links provided as part of the sessions) if you wish to know more.

Please note

My update is an overview of the day, and as such I have had to paraphrase some of the information. This means that in some cases (especially specific questions and answers listed) I have not written the exact words used, and as such may have gotten the meaning slightly wrong. Please speak to your health professional before regarding any of the specific advice on this page.

Here’s some quick links to the subjects covered on the day.

Endometriosis anatomy, presentation, diagnosis and symptoms

The day opened with a superb introduction into the medical basis of endometriosis and was a great overview into how it presents in patients and what symptoms it causes. Very useful for those in the audience who were still quite new to endometriosis and a great refresher for those of us who know this detail intimately.

It was led by Shareen Khazali (a consultant gynaecologist), and he opened the discussion by commenting on how great it was to see some men in the audience (obviously there to support their partners). He took this moment to remind us all that it’s possible for men to get endometriosis too (although extremely rare).

He also reminded us that endometriosis can be found places other than the pelvic region, in severe and potentially quite rare cases it’s been found on the sciatic nerve, brain and lungs.

We learnt about the first person to name endometriosis (Von Rokitansky in the 1800s) and the chap (John Samson) who first thought of the theory of retrograde menstruation for a possible cause of endometriosis in 1920. We still don’t know what causes endometriosis definitively, but the this theory (where menstrual fluid travels up the fallopian tubes enabling endometriosis to grow in the pelvic cavity) was one of the first possible theories produced.

It was also really nice to hear so many mentions during the day of endometriosis’ sister condition adenomyosis, where the womb lining tissue grows in the muscle of the womb. This continues to be even harder to diagnose than endometriosis, as it cannot be seen as endometriosis can and remains a hidden, and equally painful disease.

What causes endometriosis?

We still honestly don’t know. I talked about the possible theories at some length in my last endometriosis info day update.

We’re not even sure if it runs in the family or has a genetic background, but we can at least determine that you do seem to be more likely to have it if someone close to you in your family does, such as your sister. There are still many mysteries when it comes to who gets endometriosis for example immunology must be a factor, to help explain why in sets of identical twins (with comparable genetic makeup) one twin develops it and the other doesn’t.

Symptoms and presentation

I particularly appreciated Mr Khan’s honesty, openness and humour when talking about endometriosis. He asked us to call out the main symptoms of our illness, aware that we knew these details all too well. On the point of pain he noted that we needed to change the idea that pain (particularly pelvic pain and period pain) is normal. He added that if your doctor ever says that the pain you’re experiencing is normal – run – it’s just not.

We took a moment to discuss the difficult issue of painful sex and fear of intimacy as a result. He noted that this symptom and its effects are not often talked about as it’s hard to talk about. It’s a deeply distressing and upsetting effect of endometriosis that effects relationships and ruins lives.

There was also a mention of heavy bleeding during periods as this is something heavily associated with endometriosis, although again we’re not really sure why there’s a link between heavy bleeding and someone being diagnosed with endometriosis.

Fatigue was another symptom mentioned, and interesting fatigue with endometriosis can be caused by other things (perhaps other interconnecting illnesses) but it was nice to see this mentioned and talked about. He added that it was normally the case that fatigue was normally caused by the amount of energy used to cope with the body being in pain all the time.

There was also discussion of pain with bowel movements and bladder problems, so he took this point to remind us of the extremely close proximity of the womb and ovaries to these areas of the body and how endometriosis can be found there too.

How to spot and treat endometriosis

What followed next was an extremely enlightening explanation of what endometriosis treatment is like from the doctors perspective. Mr Khan did his best to explain to us quite how hard endometriosis is to recognise prior to surgery, how it masks and masquerades as many other different things. It was a really interesting speech and it certainly helped to explain some of the back and forthing a lot of us have to do between a lot of different doctors before we find something that fits.

Opening someone up for a surgical diagnosis (which is normally how endometriosis patients are diagnosed) does have inherent risks, so doctors will do their best to establish a certainty of endometriosis before putting a patient through that. Remembering as well (as I wrote in my causes of endometriosis section from last time) that surgery can invite more endometriosis.

He used the example of how illogical endometriosis can be, by talking to us about IBS (something that many of us are misdiagnosed with before endometriosis, this is often because if there’s a list of possible causes for someone’s discomfort and pain endometriosis is one of the most problematic in regards to treatment and diagnosis, it’s easier to rule out the other possibilities first.

It’s also not helped by the fact that there isn’t a set way to treat endometriosis, that works every single time and that is consistent from patient to patient. He used the example of gall stones here. Everyone acknowledges and understands and can see a gall stone, everyone in the medical community (and outside of that community) agrees on how to treat that.

Wouldn’t it be great if endometriosis was that simple? He also added hopefully that if you reach the last step of an endometriosis diagnosis, have surgery and nothing is found he remarked that chronic pain is a long journey, it could be any number of things, so just because endometriosis isn’t found doesn’t mean that nothings wrong with you. He gave a more detailed answer on what happens if you have a laparoscopy and nothing is found in the Q&A session.

Surgical treatments of endometriosis

We heard about some of the different classifications of grading endometriosis, there are many different scales. The one we’re all used to is the commonest one where the severity of the disease is numbered one to four (with four being the most severe). A newer grading system concentrates on fertility. Interestingly though none of the grading systems consider the amount of pain that the patient is in.

Here’s a picture of the Enzian scale which is used by surgeons, so they can compare the presence of endometriosis in different patients.

Enzian scale for endometriosis

Again, like last year we saw a lot of pictures (and some video) of what endometriosis looks like and some examples of surgery being performed. This included a video of a very serious case of endometriosis, where the patient had already had nine laparoscopies and two laparotomies.

Mr Khazali said that the problem with endometriosis that it’s like an iceberg. It goes far deeper than what you can actually see. So sometimes just burning of what you can see of the endometriosis just treats the superficial damage. Ideally to get the best possible chance from your surgery you’ll want to remove as much of the disease as humanly possible.

He added that if you wanted to make sure that you surgery was of a certain standard (or if you were suspected of endometriosis and nothing was found) ask for a DVD of your surgery that you can pass on to another consultant. That way you’ll have a permanent record of what happened.

Myths about endometriosis

  • endometriosis doesn’t equal infertility
  • it’s normal to have pain
  • [X] or [Y] causes endometriosis
  • hysterectomy is the cure (sometimes helps, although it is effective it does in the case of adenomyosis)
  • hormones cure endo (only help with symptoms and treatment)

Finally he finished his talk with two further thoughts. That we’re going to beat endometriosis by empowering patients with the information they need to demand the right treatment.

He finished with a word of caution, to be careful of some alternative therapies, to be on the look out for expensive treatments or people asking for a lot of money for a solution or a cure. There are better ways of managing and coping with the pain and some people act on our desperation to be fixed.

Surgical question and answer session

This overview does not completely reflect the information from the day or the consultants exact words. Please speak to your health professional for advice, only they know you and your personal circumstances.

I had a laparoscopy to diagnose endometriosis and nothing showed up, what now?

This is a frustrating scenario. Chronic pelvic pain is complicated. The right approach is to remind the patient that it may not be endometriosis, but your pain is still there and we’ll have to look through some other possible causes. Let’s tick them off one by one.

Usually the reasons for not finding endometriosis are for two reasons:

1) Person does not have endometriosis. The surgeon looked carefully and there was nothing to be found, (remember that video talked about above) and show it to someone else.

2) The endometriosis is in very unusual places I wouldn’t normally look, but this is very rare, e.g. sciatic nerve

It’s important to be open and honest with the patient. Okay you don’t have endometriosis, but that doesn’t mean that you don’t have pain, and there must be a cause, and we’ll look for other solutions. For example it’s possible that they have adenomyosis – remember it can’t be seen in the same way endometriosis can.

Another way to know might be using drugs (like Zoladex) to stop the ovaries, and that helps and provides relief, you may have endometriosis, and the surgeon has missed something, if it doesn’t help, you probably don’t have it.

Can you use a scan to diagnose endometriosis?

Yes, depends on the experience of the person doing the ultrasound. It requires specialised training to see and may be missed by a general ultrasound operator. We use ultrasound scans to diagnose endometriosis at the specialist endometriosis centres in the UK.

After having a laparoscopy to remove endometriosis, how long will it take for there to be regrowth?

30% of patients will recur within five years, but a lot of that depends on the amount done during the first surgery to remove – how much was done, how much was removed, and if much was left to regrow.

It also depends on the type of endometriosis too. For example there is an eight fold decrease in the regrowth of endometriosis of the ovaries for example of surgery is performed.

Hormonal treatments for endometriosis and pain management

This talk, while extremely interesting covered hormonal and pain killing treatment for endometriosis, and I wrote up extremely detailed notes on all the drugs involved on a very similar session last year.

However I did appreciate the reminder that the quality of life and the symptoms that the patient is experiencing often doesn’t relate to the extent of severity of the disease.

The basics of this talk described how treatment is based on the specific symptoms that someone is experiencing. How endometriosis is driven by hormones, and how most women experience symptoms that are easier to cope with during pregnancy or after the menopause. So most of the hormonal treatments for endometriosis rely on recreating (or educing) these two very different hormonal states.

Most treatments involve getting rid of or stalling the period, so that pain lessens or stops. You can read about the write up I did of the different hormonal treatments and types of pain killers.

One of the slides was of a very interesting, (but very generalised treatment course table. I’ve done my best to recreate it here, but basically you’ll work down one of the columns (tailored by your health professional), and naturally any steps that you don’t want to take, you don’t have to.

Fertility not desired Infertility
oral conceptive, mirena, progesterone laparoscopy
gnrh, HRT add back IVF
laparoscopy
hysterectomy

Pain management in endometriosis

This talk was provided by a GP who used to work as a Gynaecologist, (who has worked on a lot of endometriosis cases) so she provided a fascinating insight into the front line of general care, and how much an observant and knowledgeable mind at a general practice can make a big difference to woman coming in with their very first experiences of pelvic pain. She was clearly getting a lot of women on the correct endometriosis care pathway much more quickly than normal.

She felt that she was making the biggest difference in general practice too, as more women come to GP services first, she described her job as a gatekeeper role, and she wants more GPs to learn about gynaecological issues as a result.

She gave us the example of three patients with different pelvic pain issues:

  • 16-year-old pupil who has come in during an emergency appointment, in a lot of pain, experiencing very painful periods
  • 35-year-old teacher, also with very painful periods, trying for pregnancy, stressed about her work and having to take time off work due to illness
  • 42-year-old who has been in pain all her life, struggling through life, and has now lost her job and is subject to financial problems

All of these women shared the same issues. They found themselves not able to enjoy life, all were in pain, and all of them were sad about not being able to reach their individual goals.

She then described how endometriosis is explained to her from someone new to the idea and not sure what it is. How the locations of pain vary, but the description is always the same, stabbing pain in the pelvis, dragging sensations. She said how she always lets the patient try to tell the story, to shed light to her about what’s going on. She noted that she knows other GPs are pressed for time, but more of them need to listen intently before offering help.

Because in the case of endometriosis, the average time to diagnose involves seven to eight years of pain. Here’s some more statistics to put that in perspective. 38 per 1000 women are effected annually with chronic pelvic pain, that’s a rate of incidence that’s comparable to asthma (37 per 1000). One third of chronic pelvic pain is endometriosis.

Pain is often caused by the inflammation that endometriosis brings, this then causes scarring, and as the anatomy of the pelvis is so close together, organs start to stick together, and these areas are often close to nerves to there’s a neuropathic element to endometriosis too.

She then spent a little time explaining how pain works in endometriosis and how the pain signals from endometriosis are passed around the body, through the nervous system and to the brain, because understanding how endometriosis pain works helps us to treat it. Often endometriosis spots can start to get their on pain pathways too, or they could be close to a nerve, or even enclose a nerve causing more pain.

She then shared a great tip about having a good meal, then taking a couple of ibuprofen a couple of hours before having a mirena inserted or before a pelvic exam. Ibuprofen is an anti-flammatory and will help you tolerate the pain of both of these treatments.

It’s also important to understand how medicines work, that we follow the instructions properly and are mindful of long term side effects, and drug interactions (when we’re taking a lot of different medicines). This is because sometimes we’re so concerned about the pain of here and now that we take more tablets that we should , or we’re not aware of how they could effect us in the future. For example, renal function can be impaired over time by taking too much over Ibuprofen regularly over a long period of time.

Ultimately using all these pain killer treatments are about breaking the chronic pain cycle.

The pain cycle

It’s not just about painkillers though, other things in our life like relaxing, exercise, yoga, physiotherapy, and TENS machines all release natural endorphins and help manage pain. It’s not just about painkilling treatment, there are other things you can try too.

Because the management of pain has to be a multidisciplinary approach, not just with your health professionals, but from the multitude of things we as patients should try out too. Pelvic pain should have increased awareness in healthcare, it should involve gynaecology, pain consultants, and your own support team. We all need to look out for the hidden symptoms and agendas of endometriosis and help other people recognise them in others.

Finally, managing your own pain is important through pain management. So do try out courses like the Expert Patients Programme and The Pain Toolkit by Pete Moore.

Nutrition and complimentary therapy

This was a very interesting talk and the first of the day from a patients perspective. Emma talked us through her endometriosis diagnosis and treatment, which included two surgical procedures and six months of Zolodex and nine months of prostap. After all of these (successful) procedures and drugs Emma decided to stop surgical and hormonal treatments as she didn’t feel like she has a lot of control over her body anymore, so she decided to try and regain some control by finding other ways to manage her pain.

She did point out though that all everything she has tired subsequently has been off of the back of surgical treatments and she didn’t rule out further surgery in the future if her condition worsened.

Diet

Emma started off by trying the endometriosis diet. While she did notice an improvement, it came at the expense of eliminating anything that tasted nice :). She’s found a happy medium now, which basically involves really good nutrition, taking control of her diet and eating more healthily. It does work, but it’s also extremely hard work and primarily involves removing wheat, dairy, alcohol, red meat and sugar.

If you try this you have a decision to make about whether or not to eradicate or moderate something. Although she’s personally found that after eradicating something from her diet, Emma could slowly introduce certain things back in to a lower level that suited her.

Changing your diet is a long term plan, not an overnight thing, it’s a commitment, so do bear that in mind.

If you’d like to know more about nutritional treatments for endometriosis, I wrote some more detailed advice from a nutritional therapist that attended the endometriosis UK day last year.

Acupuncture

Emma said she was in a cynical mindset when she tried this. She was fed up (during bouts of surgery and hormonal treatments). But acupuncture has helped her personally with managing pain, and she’s found that some of the reasons she’s found it useful is because the treatment is tailored specifically to her needs for that day and how she felt at the time.

There is a cost implication to this sort of treatment naturally, but she said that taking 45 minutes out of her day every two weeks that was just for her, and her wellbeing might be something to do with the reason it helped her.

Exercise

Emma managed to exercise after surgery by setting herself an achievable goal. She wanted to run a 10k for Endometriosis UK. It was not a lot of fun to start exercising, but she did manage to run it. It’s all about building up what you can do slowly and being kind to yourself.

The upside of exercise is the more exercise you manage to do, the more energy you have and your sleeping patterns are better as a result. You have to be in the right place in your treatment for you to know when to give it a go.

It doesn’t have to be running either, it can be other things like yoga, pilates, swimming or cycling. There are plenty of choices out there, you just have to fund something that works for you.

Cognitive Behavioural Therapy (CBT)

Emma found herself beset with worries (even after treatment). Worries about life can often lead to depression, and she found that she couldn’t stop herself worrying about the future she attended CBT sessions to stop the negative thoughts. These sessions helped to “rewire her brain”, to stop the negative thoughts and help her think about things differently and in another way.

Through this she was able to gain perspective of her circumstances and learnt to relax as a consequence. If you wanted to try this you could ask for a referral through your GP (just ask!) or self-refer yourself to an appropriate course if you’d prefer to do that.

In addition there is a free scheme in the UK at your local library called Books on Prescription. These are CBT books recommended by the NHS, that cover a range of topics such as overcoming chronic pain, anxiety, chronic fatigue, low mood and depression. Just go to your local library and look out for the books on prescription self (normally near the health section) or ask a librarian to help you.

General tips for managing

  • Consider your lifestyle and what works for you and what you can personally afford.
  • Always consult professional bodies – make sure the people you go to for treatment have all the right accreditations
  • It’s about long-term management – if anyone says they can cure you be wary, we don’t know what causes endometriosis yet, so how can we know the cure?
  • Be honest with your care team – talk to your doctor and consultant about other things that you’re trying, share what you’re doing.
  • Endometriosis is a long journey, so don’t be afraid to try lots of different things to get your quality of life back.

Endometriosis: partners and support from others

This was a great crowd-sourced talk, that became like a shared group discussion towards the end. The basic idea was to understand how to get the support that suits you and how we’re already making use of lots of different avenues to support already – we’re all finding a way to manage on some level.

These are the points we settled on as a group, so each of the bullet points here was shared by an endometriosis patient.

Why do we need support?

  • Endometriosis is not a well-known disease (despite being so common) it’s also a hidden illness, no one could guess walking into the room that we were all sick.
  • Because it’s a hidden illness, it’s really important talk to those around us so they understand what we’re going through, there are few visual cues to help those around us of how we’re feeling.
  • It’s an embarrassing illness, talking about endometriosis often means sharing details about periods, sex, bladders, bowels and there’s still a real stigma about talking about any of those things.
  • We often need practical support as well as emotional support, because there are days where we can manage very little, and we often need help doing things.
  • By talking about is we’re an advocate for our illness and we provide information to others.
  • Endometriosis is a very draining illness, and it leaves many of us tired and fatigued, most of the time.

What does support mean?

  • That those around us gain a better understanding of what we’re going through.
  • That we’re not alone.
  • We’re able to mentor and show others who will fall ill with endometriosis after us the way.
  • Empowerment – despite illness, pain and fatigue, support empowers us to do more for ourselves.
  • Perspective on our illness is very important, by sharing things with others we gain insight on other ways to manage.
  • Hope 🙂

Where do you go for support?

  • The internet / Twitter & Facebook, websites and blogs.
  • Our husbands or partners
  • Our doctors
  • The fridge 🙂
  • Our therapists (CBT)
  • Our friends

A number of people shared their frustration about how they have to remind people that they are ill on a fairly regular basis . Even those that understand us have a hard time understanding that we have a long-term illness that slowly improves and won’t necessarily be fixed by each bit of surgery we have. Many people also shared they they felt their GPs didn’t understand either (or that they as patients knew more about endometriosis than their GPs). We talked about how this was a real shame, as we then started to lose trust in those of us that are treating us because they don’t seem to understand what we’re going through.

Two people shared their stories of being misdiagnosed with chlamydia. Health professionals (incorrectly) insisted their pain must be caused by that because of their younger age. They were tested for chlamydia and it was eventually ruled out and they were vindicated, but it was a shocking and demoralising story to hear.

Lots of people shared stored about the diagnosis progress and noted that raising their concerns and repeating the fact there was something wrong with them led to them being regarded as “whingey” by their healthcare staff.

Someone asked a question about if there was any media to explain what endometriosis is. I shared the fact that Pain Concern has done a fantastic episode of their podcast on the topic endometriosis, it comes highly recommended from me. 

Carole, the group leader reminded us that she would be doing a talk at TEDxBrighton about endometriosis shortly.

Who needs support?

  • Us
  • Our partners and family – we often get support, but those around us often don’t receive any support themselves, and don’t feel as though they can ask for any from us because we’re already struggling.

It is distressing for others around us who care for us to watch us suffering. A mother of a patient shared her experience of watching her daughters suffering both day-to-day and through her most recent surgical after care. She said that many people supporting endometriosis patients feel helpless and its heartbreaking to just sit there and not being able to take the pain away. She felt that modern nurses know the machines and equipment they have to use but have forgotten about really caring and enquiring about the people attached to them.

As the day proved though, there are great pelvic pain nurses out there, as proven by the nurses who came along to find out more at this information day.

Endometriosis & partners

We also heard some details about the Endopart study. Which is research that has gone into the impact of endometriosis on couples. The study interviewed partners and sufferers separately to find out how endometriosis was shaping their relationship. Crucially the study had a mix of new partners and people who were with the sufferers before they were diagnosed. You can find a summary report and list of recommendations from the study here.

A difficult topic is the loss of intimacy between couples, as endometriosis often means painful sex, and that is both hard to talk about and manage with. The group shared that there’s very little help available for this difficult element of a relationship, and there’s even less support for the husbands and partners and understanding and recognising their needs.

Four people in the room has been offered psychosexual therapy to help address the deep-rooted psychological problems that can arise about sex because of endometriosis. Many women find it incredibly hard to continue to have sex because of of the pain, and many have stopped desiring it as a result (and because of the side effects of their medication).

Other women talked about the immense difficulty in explaining the issue of endometriosis to a new partner, almost feeling like they had to disclose everything about their illness (and what life with them would be like). Some people felt this has to be done very early on into a relationship to give the person “the option to leave you” if they wanted to.

What does good support do for us?

How to get the most of the NHS?

The next part of the day was very UK-centric as it focused on how to get the best service and care from the NHS. This mostly involved learning to become an expert patient, and learning all that you can about your illness and symptoms. Once you’ve done that you’ll be in a better position to be more involved and engaged in your own treatment, this will enable you to make more decisions for yourself.

On a sidenote, the new Endometriosis UK website should be available in January 2014, which will host a bunch of new information and help on this issue.

What does the new NHS look like?

Here’s a great video that explains the new structure.

Basically the new (and existing) useful bits that will effect us as patients are:

Clinical commissioning groups (CCG)

These include GPs, practice managers, and patients. These groups decide how money for our local NHS area will be spent.

Health and wellbeing boards

These boards make recommendations to the CCGs about priorities and treatment. You can be be a part of this process by finding and joining your local Healthwatch group. Healthwatch is an independent patient advocacy board which patients can join and use to lobby for issues they wish their local NHS to focus on. Healthwatch reports to the health and wellbeing boards which is turn passes information up to the CCGs.

So, if you can during your treatment, if there’s something you want, or something you wish to be improved, you should get things down in writing, so that your letters, reports and experiences can be used to pass on to CCGs as evidence of what you’d like to change.

Choose and book

In the UK you have the right to choose where your GP refers you to, you should be given a choice of places you can go to for treatment. You can find out more about the NHS choose and book service here.

You can for example ask your GP to refer you to a BSGE endometriosis specialist centre (if there’s one in your area) if you’re GP isn’t made aware of what’s out there, they they can’t make a recommendation on your behalf about where you can go. So do your own research about what’s in your area. Doing this doesn’t just improve your care, but makes doctors aware of what’s out there for others.

NHS constitution

You should also find out about, read and understand the NHS constitution. It details your rights as a patient, your rights to access to care, second opinions and maximum waiting times for treatment among many other things.

You are also entitled to get a copy of your medical records as it involves your personal information and you have a right to either view it or get paper copy.

Self management

Doctors and nurses do a great job, but can’t be there all the time, so you must be use of other (often free resources) that are out there for you to look. Try searching your local Healthwatch site for information on free resources, support groups, and painand self management groups. However I can personally recommend The Pain Toolkit to help get you started.

General advice

  • Take control of your care because nobody else can, become a expert to that you can be involved in your treatment and care.
  • Management of endometriosis means different things for different people – find what works for you
  • you’re not alone
  • your experience and level of pain is real
  • get the information and support that you need to ensure that you get the very best out of the NHS

Fertility question and answer session

How long can you be on Provera safely?

As long as you need to. Unless you’re a teenager, then you could be at risk of some bone density problems as a side effect. Side effects of the drug are the are the main issue here.

How long is safe for you to be on the pill?

Taken continuously for around three months and stopping, and repeating three month take is normally what I’d recommend.

How can you get referred to a BSGE centre?

Ask your GP for a referral, if there’s one in your area.

If you have adenomyosis, can this affect fertility?

Well adenomyosis is more common in people who have already have children, so generally speaking no, we don’t think so.

If endometriosis doesn’t necessarily make you infertile, is it linked to reduced fertility?

Yes. We think this is because in patients with endometriosis, the hair on the fallopian tubes move more slowly and less efficiently, there was some research on this recently, but we’re still not completely sure why.

If you’re going to be having IVF treatment and are on Provera at the moment, how long should you be off the drug for before starting IVF?

One year.

Once you stop taking Provera, what the chance that the endo will reoccur?

100%. Provera doesn’t stop or remove the endometriosis, it simply makes it dormant. It does not take the disease away. Something else would need to be done to remove (such as  surgery).

So will starting IVF (and the drugs you have to take for that) make the endometriosis worse?

Difficult to know, but in theory the drugs you take work in a similar way to Zoladex, so in theory it should help while you’re trying to conceive.

TEDxBrighton talk about endometriosis

To close the day we got a sneak peak of the talk about endometriosis that was be given at TEDxBrighton the following week.  Carole’s talk was aimed at people who do not know what endometriosis is and the aim is to share it as much as possible so a wider audience understands the impact of endometriosis.

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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.

4 responses to “Endometriosis UK information day – October 2013

  1. Reblogged this on the best liar you know and commented:
    What a fantastic write up by Michelle B at ENDOhope from the UK information day. While it does have some UK specific references, the majority of it is useful regardless where you live. I thought the link to the study on how endometriosis affects couples was particularly interesting.

  2. This is brilliant thank you so much for putting this up xx

  3. Hi there, just became alert to your blog through Google, and found that
    it is really informative. I am gonna watch out for brussels.

    I will appreciate if you continue this in future.
    Numerous people will be benefited from your writing.
    Cheers!

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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.

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  • I'm taking a break from here until my family in Dominica are better. Things are still really bad. 1 week ago
  • My friends, an urgent plea from my family. They are starving and homeless after Hurricane Maria in Dominica bbc.in/2ypMPOn 3 weeks ago
  • Going to be quiet here for a while. my family are unaccounted for in Dominica due to Hurricane Maria. 😣 3 weeks ago
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