How to cope with endometriosis and manage it moving forward

Endometriosis can be a challenging condition to deal with, both physically and emotionally. But with proper interventions and proper management and treatments after diagnosis, you can be shown how to deal with the associated symptoms of endometriosis and improve your quality of life. Please have a read of some of the best ways to cope with endometriosis.

Endometriosis can be painful disorder that is characterized by tissue that behaves like the lining of the uterus but that grows outside the uterus. Endometriosis is really normal tissue growing in abnormal places. This tissue can be found in various places, such as the ovaries, fallopian tubes, and pelvic lining, and even in or around the bladder and bowel.

Endometriosis affects around 1 in 10 women and girls and those are only the ones diagnosed. This mean these figures are grossly under-diagnosed and downplayed with many women not being diagnosed properly and those that do not even know they have the disease. Endometriosis can cause symptoms during the reproductive years, between the ages of 12 and 60, but it can show up in young girls under 10 years old too.  Many people with the condition remain undiagnosed and many more and missed and dismissed with many taking up to ten years or more to be diagnosed.

The main symptom of the condition is usually pelvic pain typically associated with the menstrual period. While women can experience some discomfort during their menstrual period, some of those with endometriosis describe pain that is worse than usual. For some it is actually unbearable. There are also other symptoms such as painful periods, pelvic pain, ovulation pain, pain with sex, chronic fatigue, irritable bowel like symptoms, bladder issues and pain and bleeding on bowel movement. This is why all women need to know that period pain is not normal, because many times, period pain can actually be a sign that a woman has an underlining gynaecological conditions such as endometriosis

There is no cure for endometriosis (not yet anyway), but there are treatment options and lifestyle changes that can ease your symptoms so that the condition does not interfere with your day-to-day life. The main thing with endometriosis is to manage the disease and try and create a quality of life moving forward. While there is no cure for endometriosis, it is possible for women to become asymptomatic (meaning having no symptoms) and this requires the right treatments and management of the disease and to see the right people from the beginning. Again, it all gets back to who you are seeing and their experience with knowing about endometriosis. This is one the biggest issues women face when trying to get treatment. Many just do not know much about the disease at all and why women are left to deal with the horrible symptoms. But with the right treatment and management, women can have a better life and be able to cope with this horrible disease.

Before we look at proper management for women with endometriosis, it is important that all understand the facts because there is so much misinformation out there and this is part of the bigger issue for women with this disease.

The Facts About Endometriosis

  1. Period Pain IS NOT Normal
  2. A significant portion of women with Endometriosis are asymptomatic
  3. Symptoms DO NOT correlate to the extent of the disease
  4. The only way to diagnose Endometriosis definitely is via surgical intervention
  5. There is NO cure for Endometriosis
  6. Having a baby will not cure endometriosis
  7. Endometriosis does not always cause infertility
  8. Endometriosis is Estrogen Driven and is not caused by Estrogen dominance
  9. The Pill, or Contraceptives DO NOT fix endometriosis
  10. You can have Endometriosis at a Young, or Older Age
  11. Hysterectomy does not cure endometriosis
  12. Endometriosis requires a multi-modality approach to be managed properly. You need a team for proper management
  13. Endometriosis IS NOT an autoimmune disease
  14. There Are Hereditary and Genetic links
  15. Endometriosis can cause many other issues in the body
  16. The first line approach for hormone therapy should be the use of progesterone only options
  17. Endometriosis needs to be excised (cut out) by an advanced laparoscopic surgeon, who has had extra years of specialised surgical training, and who specialised in the excision of the disease and specialised in the disease itself. Surgery should be performed by anyone other than an advanced laparoscopic surgeon and not by just a regular gynaecologist
  18. Not all women with endometriosis have suffered sexual abuse

 

What Women Can Do To Help Manage Endometriosis

1.Seeing the Right Specialist & Surgeon

First and foremost make sure you have seen someone who specialises in endometriosis and the management and treatments moving forward. You also need to make sure that your first surgery is your best surgery and that you have seen an advanced laparoscopic surgeon to ensure you have had the proper surgical intervention. This is many women’s biggest issue as they have not seen the proper surgeon initially and they aren’t seeing someone who specialises in the management of the disease moving forward.

2.Watch your diet

Eating the right foods may provide some protection from the symptoms of endometriosis. The role of diet in endometriosis has been investigated in recent years due to the influence of diet on some of the processes linked to the disease, such as inflammation, prostaglandin metabolism, and estrogen activity. Many of the so called endometriosis diets out there are now outdated and have outdated nutritional and dietary advice that don’t really help much at all. Women need to adopt an anti-inflammatory (grain free, primal, ketogenic style diet) to help with settling any inflammation in the body and also helping the immune system. This also needs to include prebiotic and probiotic bacteria to help with digestive function, immunity and gut health.

Certain environmental estrogens such as preservatives, plastics, pesticides and insecticides that can be ingested through certain nutrients have been suggested as risk factors for exacerbating endometriosis too.

Excess body fat, now known as obestrogens (because it is estrogenic) needs to be controlled and managed through diet and exercise too. We know that estrogen drive endometriosis and that any estrogens (dietary, body fats, environmental etc) needs to be regulated and controlled.

3.Boost intake of omega-3 fatty acids

Researchers have also found that the type of fat included in your diet makes a difference in your risk of endometriosis. Studies have shown that people whose diets were heavily laden with trans fats increased their risk of the expression of endometriosis by 48 % when compared with individuals who ate the least of these. By comparison, women whose diets were rich in omega-3 oils lowered their risk of endometriosis by 22 % compared with those who consumed the least amount.

Eating foods high in omega-3 fatty acids, such as salmon, flaxseeds, almonds, and walnuts, may be helpful for endometriosis. Women should also be supplementing with Omega 3 oils too. Just remember, it is all about reducing inflammation.

4.Exercise

Often, people who experience pain fear exercising, in case it causes more problems for them. But over time, regular physical activity may decrease the pain and discomfort that you feel. High-intensity exercise and resistance training can help to reduce the symptoms of endometriosis.

Exercise may help those with endometriosis in many ways, including:

  • encouraging the circulation of blood to your organs
  • maintaining nutrients and oxygen flow to all your body systems
  • decreasing estrogen production
  • reducing stress
  • releasing endorphins in the brain, which are pain-relieving, “feel good” chemicals

Women who regularly exercise may be likely to have the symptoms associated with endometriosis. Research has shown that those who engage in frequent high-intensity physical activity have fewer symptoms of  endometriosis than women who do not participate in regular exercise. High-intensity physical activity, such as running, swimming, weight training etc, may be beneficial for reducing your symptoms.

Low-intensity exercise, including Yoga and Pilates may provide some relief in endometriosis, too. Yoga and Pilates can stretch and strengthen your muscles, help with core strength, help with circulation, which all may be beneficial for pelvic pain management and stress reduction.

5.Managing Stress Levels

Stress is a big factor in any disease and can make any disease worse. Not only can stress be exacerbated by endometriosis, but so can endometriosis symptoms be exacerbated by stress, in a never-ending cycle. Endometriosis could contribute to making your stress levels worse, due to the impact that the associated symptoms have on all aspects of your life, including family and personal relationships and work.

Stress management, Counselling, Mindfulness and Relaxation techniques can help to reduce stress that exacerbates endometriosis-related symptoms and pain.

Women with endometriosis need to manage stress by using mindfulness and relaxation techniques. These can help you to increase your awareness of your body, refocus on something calming, and reduce the activity of stress hormones and inflammation in the body. It is all about learning coping mechanisms and what works best for you, not what works best for others.

6.Try complementary medicine and therapies

Many women with Endometriosis find symptom relief from using a range of different complementary and alternative medicines. The Royal College of Obstetricians and Gynaecologists also recommends that women try natural medicines to help with the management of endometriosis and the associated symptoms. There is now some good research to support many natural medicines treatments such as acupuncture, Chinese herbal medicine, vitamins, omega 3 oils, probiotics, chiropractic/osteopathy, yoga, pilates and more.

Out of all the natural medicine therapies, Acupuncture and Chinese medicines has been the most researched and have shown to be the most beneficial to those suffering this disease and its associated symptoms.

Certain strains of prebiotics and probiotics have also been shown to help with the immune system, microbiome, bowel, and digestive associated symptoms of endometriosis. Probiotics have also been shown to not only help with digestive and immune function, but also with the psychological function as well. It does need to be specific strains of probiotics though.

Just like with medical treatments, when it comes to complementary medicines, it is important to find someone who is a qualified practitioner and who specialises in endometriosis. Just like in the medical model, this can also be hard to find.

7.Medications

Your endometriosis specialist can provide you with a list of treatment options for endometriosis and outline the risks and benefits of each. They will take into account your age, your symptoms, whether you want to become pregnant, and any treatments that you have had previously. It is important to manage pain and inflammation so that you can have a life and to be able to function daily.

You may need to use different forms of pain medications on script, as well as those that can be purchased over the counter. Please ensure you speak to your healthcare provider about setting up a pain management plan when using medications

You will also need to look at hormone therapy to help slow down the growth and expression of the disease and microscopic implants and also help with the associated symptoms of the disease. Hormones will usually be in the form of progesterone only medications and gonadotropin-releasing hormone antagonists and agonists. You may be prescribed other hormones depending on your individual case and symptoms.

Although all of these hormone therapies are effective at treating endometriosis, but,  they all have different side effects. You need to talk to your doctor and pharmacists about the side effects and risk factors of any medications and hormones that you are taking.

In Summary

It is important to know that women with endometriosis will need a multi-modality, or team approach to deal with this disease. The team you need and modalities that you will need will be dependent on your individual symptoms. Try and find healthcare professionals that can offer you a multi-modality approach for ongoing care and support and who also have a team of other people who specialise in the disease too. Again, the approach that you and your specialist choose to take will vary depending on your signs and symptoms, and whether or not you would like to become pregnant in the future.

Before starting any treatment, it is important to know all of your options and the potential outcomes of all of them and to know that the people that you are seeing are specialists in endometriosis and know how to manage the disease properly. That can often be the hardest thing to find and why you need to do your homework and see people who are specialists in this area of medicine.

Regards

Dr Andrew Orr

Reproductive Medicine and Women’s Health Medicine Specialist

-No Stone Left Unturned

-Period Pain IS NOT Normal

 

Incontinence, Bladder issues and Weak Pelvic Floor

Incontinence is often an embarrassing condition that will have more than a third of people suffering in silence because they are too embarrassed to seek treatment. Both men and women can suffer incontinence. Although patients don’t die of incontinence, they often can’t live a fully productive life, they may have to curtail their workload or change jobs. Many factory workers and school teachers are only allowed set times for toilet breaks, so patient with urge incontinence may have to change jobs. Patients who work in the military or the police force may have to resort to desk jobs. Too many women with incontinence stop having sexual intercourse, either because they are afraid they will leak during sex, or else they actually do leak, either at penetration, or at time of orgasm, which can be very disastrous. While men can also suffer incontinence, I am mainly going to focus on the causes of incontinence in women for this post.

Many people don’t seek treatment because they also believe that surgery is their only option. Nothing could be further from the truth and surgery should only be used as a last resort once conservative methods have been used and aren’t working. Even then, the surgical approaches used today are less invasive, are very effective and the recovery is very quick. It is not like it was 10-20 years ago. Keyhole surgery has really made major changes in this area and new surgical techniques are so highly effective.  I know people want to avoid any surgery, but sometimes it is needed and these days the recovery rates are so quick. A few days out of your life for recovery, can actually change your whole life. I just do not understand why anyone would put up with a life with incontinence, prolapse, or weak pelvic floor, when these issues are so easily fixed these days. I know many patients are so amazed at how easily their incontinence issues was fixed and how amazing they feel in getting their life back again. No more leakage when they laugh, cough, or exercise.

Some people never seek treatment believing that incontinence is just a normal part of life. Again, this is not true and all and I encourage anyone with incontinence to come and talk to me, or you pelvic floor specialist, so we can help treat you and can also refer you to the right people for treatment and management if needed. I know my pelvic floor/urodynamic surgeon is amazing and what he can do for women and these issues is amazing too. Then I just help with the management and strengthening moving forward.

Like I said before, surgery isn’t always needed. Many times conservative measures such as pelvic floor exercises, core strengthening, bladder toning, topical estrogen therapy, internal TENS (electrostimulation) and pulse magnetic therapy can all product fantastic long term treatment to this often debilitating condition, without the need for surgery. There are also some special rings and other devices that can be used to prevent leakage and support prolapsed bladder and also vaginal prolapse causing incontinence. Men with incontinence also have options at hand and these can also be explored well before surgery is needed. What people need to be aware of too, is that if you have been doing all the conservative treatments, and they aren’t helping, then it is time to get some surgical intervention. I think people think that pelvic floor exercises with fix all bladder and pelvic floor issues, and this doesn’t work, then there is nothing that can be done to help them. I need for all women (and men) to know that there is always help for bladder and pelvic floor issues and you just need to see a specialist, not just your GP.

On a natural medicine level, acupuncture has been shown to be very effective in the treatment and management of pelvic pain, prolapse and incontinence. Anyone with incontinence should be using acupuncture as part of their overall management. There are also Chinese herbal medicines that can help with toning the pelvic floor and bladder to help stop incontinence. Yoga and Pilates may also help toning of the pelvic floor and help managing incontinence, pelvic floor and post-surgical management of prolapse too.

Incontinence and bladder issues are defined as needing to pass urine more than 8 times per day, leakage of urine through cough, sneeze, urge, or without cause. It is important to seek help if you notice damp underwear, need to use pads because of leakage or are constantly running to the loo to pass urine.

There are many different types of incontinence with the main ones defined as stress incontinence, urge incontinence and voiding dysfunction/incomplete emptying. There is also mixed incontinence (mix of the 3 main ones) and also a term called overactive bladder syndrome which can be a mixture of all forms of incontinence. There are also inflammatory bladder conditions that cause incontinence such as bacterial cystitis and interstitial cystitis. Physical issues such as previous surgery, childbirth and prolapse can also cause incontinence too.

The first task for the clinician is to find out how severe the incontinence is, based on the frequency of leakage, whether the woman finds it necessary to use incontinence pads, and if so how many pads. Some patients may prefer to change their underwear more frequently, while others may tuck tissue paper inside their underwear, and just throw away the tissues whenever they are damp.

The classic feature of stress incontinence is that the patient leaks with coughing, sneezing, laughing, running, playing sport or lifting heavy objects

The classic feature of urge incontinence is that the patient rushes to the toilet with an urgent desire to pass urine, but as she gets to the loo and is taking down her trousers, the urine comes away from her- sometimes before she has even sat down. Unfortunately these patients cannot predict when these bladder spasms will come upon them, and therefore can’t really tell when they are likely to leak.

Nocturia is defined as being woken up by your bladder needing to go to the toilet- as opposed to being woken up by a crying baby, a snoring husband, or menopausal night sweats. However nocturia is age dependent. Nocturia is defined as waking 1 or more times per night if under 60 years of age

Typically this patient Voiding dysfunction/ Emptying difficulty has to strain to commence voiding (called “hesitancy”). She may also have observed that when she compares herself to other women urinating in the toilets at the movies or in airports, her stream seems poorer than others with the urine dribbling out more slowly. She will often also describe the sensation of incomplete emptying and may need to go back to the toilet within a relatively short time to re-void. Sometimes she will leak as she gets off the toilet, which is how she realises that she is not empty. This is called post-micturition dribble incontinence.

In males these symptoms most commonly occur when the prostate gland is enlarged- causing a relative urethral obstruction and making it more difficult for the urine to get out. These men have chronic high residual urine, so they end up going to the toilet very frequently in a vain attempt to empty out. They often dribble urine onto their clothes. When such men have prostatic surgery they usually find that their urine flow rate returns to normal and they usually stop dribbling.

We will also need to explore how inflammation of the urinary bladder leads to suprapubic pain, and consider the two main causes of this, Bacterial Cystitis and Interstitial Cystitis .It often feels difficult to treat incontinence in the presence of bacterial cystitis, because such patients are overwhelmed by frequency and urgency of micturition and they may experience disabling suprapubic pain. It is fixable with the right treatment though. It all gets back to who is managing you.

On the other hand, a separate cause of Urinary Pain, called Interstitial Cystitis, does not usually cause much incontinence at all- it just causes suprapubic (bladder) pain with severe frequency and urgency of micturition.

The overactive bladder (OAB) is a clinical syndrome, not a urodynamic diagnosis. It comprises frequency, urgency, and nocturia, with or without urge incontinence.

Gynaecological conditions such as Endometriosis and Adenomyosis etc can also cause issues with bladder and pelvic floor.

Please read my post on Atrophic vaginitis as this is also another cause of weakness in the pelvic floor and bladder and could be a cause of incontinence.

No matter what sort of incontinence you have, there is always an answer and a solution to your problem. Not all solutions are surgical either. More often than not some conservative treatments, some exercises and some acupuncture is all that is needed. Sometimes all some women need is some treatments with estrogen creams to help with tone in the vagina, bladder and pelvic floor

Surgery and now bionic devices are always an option for those whom have tried conservative options and aren’t getting the desired results. Surgery is often used because of quality of life issues. Again surgery these days is so effective and less invasive and the recovery is so much quicker due to keyhole surgery and new surgical interventions.

If you are experiencing incontinence or bladder issues, please book in and see me, or a good pelvic floor/urodynamic specialist, so you can be evaluated properly and see what is going on and implement the right treatment strategies to get your quality of life back again. Many times there may be an easy non-invasive treatment for your particular issues. Even when surgical intervention is needed, these days even this is less invasive than it used to be and the recovery and results are very quick.

Please read my post of Atrophic Vaginitis as well as this all ties into this area too, especially for those women in the menopause and post menopausal time of their life.

 

Regards

Dr Andrew Orr

Reproductive Medicine and Women’s Health Medicine Specialist

-No Stone Left Unturned

– Women’s & Men’s Health Advocate

Period Pain “IS NOT” Normal and Doctors in Australia and The Rest of The World Need to Start Listening

Millions of women around the world are told that period pain is normal and then go on to endure years of suffering and even infertility because it. Some women have endured so much pain and been “missed” and “dismissed” by so many healthcare professionals so many times that they have taken their own life because of it. It just should not happen and it needs to stop.

One of the major causes of period pain is Endometriosis, or its sister disease Adenomyosis. This crippling disease can cause period pain, pelvic pain, joint pain, pain with bowel movement, irriatbel bowel syndrome, pain with ovulation, swollen painful belly (known as endo belly), chronic fatigue, anaemia, heavy painful menstrual flow and can lead to infertility. Some women will quite literally not even be able to work due to debilitating symptoms of this disease.

It is estimated to affect 176 million worldwide and affect one in ten women, but that is only the ones diagnosed, so those figures are grossly understated. The facts around the disease are also grossly understated and poorly understood by many and why so many women are “missed” and “dismissed” by all the so called healthcare professionals they have seen. The other issue for a significant portion of women with the disease, is that they are asymptomatic (meaning no symptoms) and do not even know that have it. Many of them may never be diagnosed unless they are having problems falling pregnant, and even then many of them are not investigated properly to see if endometriosis is the cause of their long-term struggle to have a baby. It really is disgusting on so many levels. There is no other way to put it.

Of those one in ten women actually diagnosed many of them have taken up to ten years, or more, to be diagnosed and have their disease “missed” and been “dismissed” by multiple healthcare professional during their debilitating journey to find an answer for their sufferings. It is a nightmare of epic proportion for women world wide and the nightmare needs to end and healthcare professionals and everyone else needs to become educated and start listening to women and getting the message out there that “Period Pain IS NOT normal”.

So many women worldwide are suffering from period pain, pelvic pain, pain during sex, or infertility and endometriosis is the first thing that needs to be ruled out. Young women in particular have trouble convincing people they are having more than just bad period pain. So many young women (and older ones) are told just to “Suck it Up”, or “Deal with it”. Many mothers will even tell their daughters “This is just normal”, or “This is just what happens”, or “I have to put up with this, so you need to as well”, when in fact nothing could be further from the truth. Teenagers are not too young to have the disease and have it diagnosed and investigated either. Early intervention, diagnosis and management is crucial when it comes to endometriosis. The longer the disease is left, the harder it is to treat and manage, and left untreated can cause a woman years of debilitation and misery in every aspect of her life, years of surgery, years of pain killers and opiates, even after the best medical treatment. Healthcare providers and women around the world need to know that the longer it takes to diagnose, the longer the disease is there and the more damage it can do inside the body. Some women will have their lives crippled by not having early intervention. Some women have got to the point that they can no longer put up with the disease and being dismissed and have either attempted taking thier own life, or have succeeded in doing so. It is just so wrong that women get to this point.

The other issue that women face, once they are diagnosed, is that many of them end up seeing the wrong specialist to do their surgery. While most gynaecologists can do investigative surgery, many of them are ill-equipped to surgically remove the disease and actually do not specialise in the disease, or the excision of the disease properly. So many women have not seen the right specialist, who has not investigated and managed the disease properly and then left women to deal with the consequences of this inadequacy in their scope of practice. Women and healthcare providers need to be educated that women who potentially have endometriosis, or have a high likelihood of the disease, need to see an Advanced Trained Laparoscopic Surgeon, who has had extra specialised training in the excision of the disease and who has had extra specialised training in the management and treatment of the disease as well. Just because someone is a gynaecologist, or specialist, does not mean they are a specialist in the disease. This is also a huge misunderstanding when women require diagnosis and management of the disease and why so many are still left with crippling pain and symptoms, even after medical intervention. Quite simply, they have just seen the wrong person for the job and this also needs to be addressed in education and training around this disease.

This week the National Institute for Health and Care Excellence (NICE) in England has released the first ever guidance on managing this horrible disease that affects millions of women worldwide. They are hoping it will not only help GP’s and healthcare providers in the UK, but also GP’s and healthcare providers here and around the rest of the world too. NICE is calling for GP’s in Australia and the rest of the world to stop overlooking symptoms of this disease, such as bad period pain, so that women are not “missed” and “dismissed” for up to a decade or more. NICE are asking for endometriosis to be taken more seriously than it presently is and while that is starting happen here in Australia and the rest of the world, the changes have still been too slow. It really is just not good enough given that so many women are suffering from this debilitating disease worldwide.

One of my mottos is that “Period Pain IS NOT Normal” and I will continue to say this forever and a day and it is great to see national health care bodies like NICE actually backing that up and trying to get healthcare providers to do the same. While others are slow on the uptake, I will never stop in my quest to get women the help they need for this disease and will do my best to stop women being “missed” and “dismissed” and get them the help, care and attention they need and hopefully be a part of one day bringing an end to this debilitating disease.

Next week I will be in Sydney at a National Endometriosis Symposium shouting my message to healthcare practitioners as well. Let’s hope they finally start listening to the facts about endometriosis too. Let’s end the silence and get this information out there to everyone. If you do want to find out more about the facts about period pain and this disease, you can visit my webpage, or you can also visit Endometriosis Australia at www.endometriosisaustralia.org. I specialise in the treatment and management of this disease and want every woman on the planet to know that Period IS NOT Normal and that there is help out there.

 

Take care

Regards

Dr Andrew Orr

Reproductive Medicine & Women’s Health Medicine Specialist

-“No Stone Left Unturned”

-“Period Pain IS NOT Normal”