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Endometriosis is more than just period pain

The Australian Institute of Health and Welfare has just released a report on Endometriosis – “Prevalence and hospitalisations”. I thought it was important to talk about this and share this information in a previous post.

When I did post this information on social media, with an explanation about endometriosis being more than just period pain, someone had commented and congratulated me for acknowledging that endometriosis has other associated symptoms as well.

One of the things I see with media reporting on anything to do with endometriosis, is that they always refer to endometriosis as just being about period pain. So I wanted to talk about the importance of recognising that endometriosis is more than just period pain.

Endometriosis has many other associated symptoms and is more than just period pain, which it is often portrays it as in the media. Endometriosis flares can happen at anytime and aren’t always related to a woman’s menstrual cycle.

Have a listen to my latest video post about this subject and some other useful information to know about endometriosis.

Endometriosis Facts Teenagers are not too young to have endometriosis

Teenagers “Are Not” Too Young To Have Endometriosis

Teenagers are not too young to have endometriosis. Many teenagers and young women are missed and dismissed when they mention they have period pain. Period pain may be a sign that a young woman has endometriosis.

Endometriosis has been found in very young girls, especially as some are getting their period as young as 9 years old, or younger. They have found endometriosis in girls as young as 7 years old when looking for causes of abdominal pain.

Endometriosis and The Causes of Period Pain Can Be Hereditary

Just remember that endometriosis can be hereditary and if someone in your family, or yourself, has endometriosis, or has pad period pain, then there is a good chance a daughter could have this problem too.

Early Intervention and Treatment is Crucial

Early intervention is the key to treating and managing this disease. If your daughter is experiencing period pain, you need to see someone who specialises in endometriosis not just your GP. Do not ever be fobbed off by any healthcare practitioner, or just get told to put the young girl of the pill.

I often get really upset hearing stories of young girls told that they are too young to have endometriosis, or that period pain is normal and just to put up with it.

Young girls are often told to put up with the pain, go on the pill and “We will deal with it when you are ready to have children”

The problem with BS statements like this is that the longer the disease is left there the more damage it can do internally. By not getting early intervention and the right treatment early enough, it could also affect a young girl’s future fertility and potential to even have children. It makes me so angry hearing things like this.

Contraceptive Hormones Do Not Fix Endometriosis

The pill does not regulate menstrual cycles and it can mask and then exacerbate conditions such as endometriosis. The pill does not regulate a proper menstrual cycle. The pill causes a withdrawal bleed and not a proper period. Women with endometriosis need certain types of hormones to help with the suppression of the disease, but only after proper investigation, diagnosis and treatment of the disease first.

Make sure that young girls are properly assessed for the causes of period pain and then managed properly moving forward. Period pain is not normal and young women can be suffering endometriosis.

No matter what anyone tells you, teenagers are not too young to have gynaecological issues such as Endometriosis and PCOS.

We Need To Stop Telling Women That Period Pain is Normal

We need to stop telling young women that things like period pain, irregular periods and absent periods etc are normal. They are far from normal and early intervention and early management could save them a lifetime of heartache and fertility issues later on.

There Is Help Out There

If your daughter is experiencing period pain, or there is a chance that she may in fact have endometriosis and she needs help, please call my staff and find out more about how I may be able to assist you in getting your daughter the right care and management moving forward.

Take care

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate

-The Endometriosis Experts

-The Women’s Health Experts

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Asking the Right Questions about Period Pain & Gynaecological Issues.

All to often women have gynaecological disease states “missed” and “dismissed” because their healthcare practitioner was not asking the right questions about period pain and gynaecological issues.

I didn’t know how I was going to start this post, or begin to talk about what I am about to talk about, other than I got some inspiration after a text message, and a phone call later on,  from my eldest daughter some time ago.

I will talk about that soon. But let’s talk about some of the phone calls and messages I get from people every day and how some of these messages gives me a heads up into what may be going on for these people and then getting them in for a proper consult and the right help.

Every day I get phone calls, emails, Facebook messages etc, from women (young and older) who are experiencing period pain, menstrual issues, and other related symptoms and nearly all of them have the same story.

“I have been to the GP and I have had blood tests and scans and they say that there is nothing wrong”. This is what I hear all so often.

It happens so often and it is like there is a script written for these poor women who just want to get out of pain and get some sort of normal life back. I get so annoyed when I hear this repetitious line. Not at the people telling me, but knowing that these poor women really haven’t been investigated properly at all and probably won’t be unless they come and see me.

I remember I got a text that I really wasn’t expecting, as it was from my eldest daughter.

It read “Hey Dad, is endometriosis hereditary?”

To which I replied “Yes it can be, why?”

I anxiously awaited the next reply and thankfully she was asking on behalf of a friend. But this poor friend had been experiencing really bad period pain and had basically had blood tests and scans and been told that everything was normal.

Apparently one of the scans showed some fluid in the Pouch of Douglas (POD), which can actually be a sign of endometriosis and inflammation. Worse still, this poor girl’s mother actually has endometriosis and nobody is putting two and two together and asking the question “I wonder if the daughter may have it too?”

Well, there is more than a good chance that she does have it and thank goodness my daughter actually knows the signs and knows that scans and bloods tests cannot diagnose many gynaecological issues, especially endometriosis.

Lucky my daughter also knows that you need to see an advanced trained laparoscopic surgeon who specialises in the excision of endometriosis and has done years of extra surgical training to specialise in these disease states. The good thing is that she knows that you cannot just see a regular gynaecologist to get this done.

But, not everyone is as fortunate as my daughter to know this and help her friend to come and see me to help her see my surgeon and then I can help her with management of the disease, if found (which is highly likely) after the surgery.

The other good thing is that my daughter knows there is no cure for endometriosis and that surgery isn’t going to fix the problem either. She knows it will help, and is needed, but after the surgery, the management post surgery is the most important, for disease states like endometriosis.

Unfortunately not many people know this and don’t have the disease managed properly post surgery. Women with endometriosis and some other inflammatory gynaecological issues will need a team approach, or a multimodality approach  post surgery, because even with the best medical intervention, it really isn’t enough and why so many women have the disease and symptoms return, or may still be in pain and have other recurring symptoms.

There is never a one treatment, one pill, fix all approach to disease states such and endometriosis. This is where so many go wrong.

One of the main issues for women can be that they really have not seen the right healthcare professions, especially the right surgeon and unfortunately this is many of the women that have had surgical intervention. This one is so important.

Whenever I get messages from women in pain, or I consult with women who have period pain and all the other associated symptoms, there are some standard questions I ask, to know if they have been given the right information, been diagnosed properly, or seen the right surgeon.

  1. I always ask “what tests have you had done?” – I know that if they have only had blood tests and some scans, then these women have not been investigated, or diagnosed properly.
  2. Then I usually ask “Have you just seen your GP, or have you seen a specialist?”– Most of the time many women have not been referred onto a specialist and have only just been seen to by a GP. This is one of the biggest issues women face when it comes to gynaecological conditions. GP’s are just general practitioners. They are not gynaecologists and definitely not advanced trained laparoscopic surgeons. The best thing any woman can do is ask for a referral to a specialist and a good GP should know to do this anyway. This is one of the biggest reasons that women from all over the world take up to a decade to be diagnosed with disease states such as endometriosis. On a daily basis women are missed and dismissed and told there is nothing wrong, go on the pill, or that they have some inflammatory bowel condition, when in fact they have endometriosis, or adenomyosis, or some inflammatory gynaecological issue. Btw, this isn’t to put GP’s down, unfortunately this is what happens to so many women and why it often takes up to a decade for women to be diagnosed with diseases such as endometriosis. This is an unfortunate fact and it needs to change.
  3. Then I ask “Have you had a laparoscopy?”– One of the most common responses is “What is a laparoscopy?” and that way I know they haven’t had one done. A laparoscopy is the gold standard investigation of the pelvis and the only way to properly diagnose disease states and causes of period pain, such as endometriosis.
  4. If the woman has had surgery I then ask “was the surgery done publically, or privately?” – This will tell me a few things. It will let me know if it was just done be a public surgeon, who probably isn’t an advanced trained laparoscopic surgeon. The issue is that there really aren’t that many advanced trained laparoscopic surgeons that do public work, and even if you strike the jackpot and do happen to get one, there is a good chance they are only in a teaching role to instruct a trainee surgeon to do the surgery anyway. But mostly women do not get an advanced trained laparoscopic surgeon in the public system. It is sad, but true unfortunately. Many times the first surgery in the public sector is purely investigative too and no excision (disease removal) is performed. This means that the woman has to come back for further surgery, or surgeries.
  5. If they the woman has had surgery done previously by a private specialist then I usually ask “Who was the surgeon that did your investigation and surgical procedure?” – Sometimes I can ask if the surgeon was an advanced trained laparoscopic surgeon and the patient usually will respond to not knowing, or even know what I was talking about. That usually gives me a clue that it most probably wasn’t, but then I can go and check the specialists qualifications online and see if they are, or most probably aren’t, an advanced trained laparoscopic surgeon who has done years of extra specialised surgical training.

All those 5 questions can tell me much about what some of these poor women have had done, or haven’t had done, and then I can formulate an appropriate treatment plan and management for these women moving forward.

It is always hard explaining to the ones that have had surgery before that they haven’t seen the right surgeon and that they are going to need further surgery. The hardest thing for me is seeing women on support pages about to have their first surgery and I always worry that they aren’t seeing the right surgeon and if they don’t, there is a good chance that they are still going to be going through the same issues, over and over again, until they find the right person to help them.

If only I could see all these women before they did anything, so that they can be given the right information and the facts and be managed properly.

The good thing is that when I do get to see women who chose to see me, I can explain to them the facts and the right information and then why and how with a proper surgeon, that it can make a huge difference to how they are feeling and their recovery and management post surgery.

I can also explain how surgery really is necessary, but is only a small part of their overall treatment and management of their disease moving forward. I can also explain the facts around their disease moving forward too and make sure that women under my care are given the right information, the right investigations and right management going forward.

This is why my initial consultations take about an hour and a half and we go over everything from their health history, medical history, hereditary issues, diet, lifestyle, surgical intervention, medications, natural medicines, blood tests, scans, investigations, sleep, sexual health, libido and everything that a woman needs to know about her particular issues.

It is also about listening to a woman’s concerns and complaints and really hearing what she has to say and is experiencing.

Then I formulate a treatment plan and management and 20 page report of findings for them for what we are going to be doing to help them moving forward.

I also give them a step by step treatment plan of treatments and medicines etc they will need too. That is why my motto is “No Stone Left Unturned”, because there is no stone left unturned and I also make sure they see the right people (surgeons and anyone else that they may need to see).

If there are things that I can’t do (surgery etc), I make sure that my patients only see the best people, in my trusted network,  and then I can help manage their disease state alongside other specialists and medical interventions.

I wish I could see every woman before they went for any investigation, or surgery, so I can point them in the right direction and help them manage their gynaecological condition properly.

This is why I am so passionate about doing my posts on social media, or giving time for charity events to talk about women’s health issues and gynaecological issues such as endometriosis, adenomyosis and PCOS.

It is why I do healthcare practitioner education and seminars to help educate them better too, so that they can help their patients better and not miss and dismiss them.

I just hope that I can help those who have not been heard and that have been missed and dismissed. I also hope we can get people to listen to the things I have presented above and also help women get a voice, be heard and get government listening and get more education to younger women too.

Lastly, I cannot say it often enough….. Period Pain “IS NOT” normal and if you, or your daughter, or your sister, or your mother, or cousin, your best friend, or anyone you know has period pain, especially bad period pain and other symptoms, please, please, do not tell them that this is normal.

Period Pain is not normal and women who are experiencing period pain need to see someone who specialises in women’s health and gynaecological conditions, so that they can be investigated properly and have their issues managed properly too.

If you do need assistance with a women’s health issue, you can make a booking to have a consultation with me. Please call my friendly staff to find out more.

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Care Advocate

-The Endometriosis Experts

-The Women’s Health Experts

What Affects a Menstrual Cycle Part 2 Common Gynaecological Factors

What Affects a Menstrual Cycle – Part 2 (Common Gynaecological Factors)

There are many things that can cause disturbances to a woman’s menstrual cycle and on my previous post I discussed how Non-Gynaecological factors, such as diet, lifestyle etc, can be contributing.

In this post I will discuss some of the common gynaecological conditions that can cause problems with women’s menstrual cycles.

The sad thing is that many of these are often overlooked and often masked by putting women on the contraception pill. The other issue is that many are led to believe that the pill is the answer to their issues, when sadly it isn’t.

Many of these common gynaecological conditions continue to become worse while having their symptoms masked and exacerbated by these hormones.

Even more disturbing is that many women are not heard when speaking about menstrual issues, menstrual pain and other factors that do in fact interfere with their daily life on both a physical and emotional level.

Lets look at the common gynaecological factors that can affect a woman’s cycle.

  1. Endometriosis – is one of the most common causes of period pain and it caused by abnormal growth of endometrial cells both inside the uterus and outside the uterine lining. The exact cause is not known.While period pain, clotting, ovulation pain, pain with sex, pain on bowel movement, IBS like symptoms etc are commonly talked about, many women with endometriosis are asymptomatic and would not even know they had it.It is commonly missed, misdiagnosed and overlooked by healthcare practitioners and is why it often takes up to 10 years for the definitive diagnosis to be made. There is no cure and now it is thought that genetic factors and parental mode of inheritance is a predominant part of this disease. We do know that estrogens drive the disease and make it worse also.

    Endometriosis can only be diagnosed by surgical intervention. For more information please read my posts on endometriosis and also visit the Endometriosis Australia website.

  2. PCO/PCOS – Polycystic Ovaries/Polycystic Ovarian Syndrome is one of the most common caused of menstrual cycle irregularities, or ceasing of the menstrual cycle.It is mainly caused by insulin resistance and it also runs in families. There are two types of presentation with this condition. One is just having the cysts on the ovaries and the other is just the syndrome without the cysts.These days it is common lobbed under the one condition called PCOS.Along with menstrual cycle disturbances, it can also cause mood swings, hair growth/hair loss, acne, ovulation pain, infertility, anovulation, weight gain/weight loss, pot belly, fluid retention and much more.

    Diet and lifestyle changes are the number one treatment for this condition. Scans can pick this condition up, but can also miss it too.

    It can be diagnosed via surgical intervention and sometimes-extreme forms of this do need surgical intervention known as “Ovarian Drilling”

  3. Fibroids – Also known as myomas are benign growths that can occur inside and outside the uterus. Up to 40% of women over 40 years old have fibroids.They can cause problems with irregular uterine bleeding, heavy long bleeding, bleeding in between cycles, anaemia, pain with sex, problems with urinating and back pain.They can also cause infertility and miscarriage.There are 3 types of fibroids (intramural, submucosal & subserosal). They are thought to be caused by excess estrogens and problems in hormone metabolism.

    They can be removed surgically and some small ones embolised.

  4. Polyps – Are benign overgrowths, or bulges, of the normal tissue lining the uterus into the uterine cavity.They can cause irregular bleeding, heavy bleeding, bleeding after intercourse and infertility. Some women have not symptoms at all.Polyps may also be found in the uterine cervix. Polyps are usually attached to the underlying tissue by a base or stalk, and they vary in size.They can basically act like an IUD and stop implantation and therefore need to be removed in order for a woman to fall pregnant.

    Polyps only rarely contain cancerous cells

  5. Adenomyosis– Is very similar to endometriosis by the fact that it causes pain, irregular bleeding, heavy bleeding, bloating, lower abdomen pain and can affect the day to day functioning of woman all over this world.Adenomyosis growth penetrates deeply into the uterine lining and also inflames the nerves inside the lining. It cannot be seen visually and some special high contrast scans and MRI can pick it up, but not always.Usually a biopsy is needed to diagnose it. Medically the only way to properly get rid of Adenomyosis is via a hysterectomy.In the meantime, mostly anti-inflammatories, some hormones and other forms of pain management are given to provide symptomatic relief.
  6. Thrush– Vaginal thrush is a common infection caused by an overgrowth of Candida albicans yeast.This yeast lives naturally in the bowel and in small numbers in the vagina. It is mostly harmless, but symptoms can develop if yeast numbers increase.Symptoms you may experience if you develop vaginal thrush include vaginal discomfort – itching or burning, a thick, white discharge with a ‘cottage cheese’ appearance and yeasty smell, redness or swelling of the vagina or vulva, stinging or burning while urinating or during sex, splits in the genital skin that can cause bleeding and irritation.The condition is mainly treated with antifungal creams, pessaries and probiotics.
  7. Cancers – In 2008, a total of 4,534 new gynaecological cancers were diagnosed in Australia; this equates to an average of 12 females being diagnosed with this disease every day.On average 4 females in Australia die each day from a gynaecological cancer each day.The most commonly diagnosed gynaecological cancers are uterine cancer, ovarian cancer, cervical cancer, vulval cancer, cancers of other female organ and placenta and vaginal cancer.All can cause irregular bleeding, but some may not present with any symptoms at all.

    Proper diagnosis and early intervention is the key to any gynaecological cancers. For more information on diagnosis, symptoms and treatment please refer to the cancer council website.

There are other conditions that I haven’t discussed because of focusing on the main gynaecological conditions that can affect a woman’s cycle. I haven’t gone into the treatments of these disease states and will go into this at a later date.

What I will say it that early intervention is the key to any disease state in the body and seeing the right people is paramount too. Please know that many of these disease states will require a multimodality approach and please remember that there is always help out there.

Never put up with period pain, or menstrual irregularities, or be told the symptoms many women face daily are normal. The value of a second, or third, or tenth opinion is crucial for some people to get help and to find the right person to help.

Please remember that period pain IS NOT normal and neither are many of the menstrual irregularities that many of you face daily. There are always treatments and help out there too.

Take care

Regards

Andrew Orr

-Leaving No Stone Left Unturned

-Women’s and Men’s Health Crusader

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Follow-Up Reply To Rust Never Sleeps & Neither Does Endometriosis

After my post on “Rust Never Sleeps and Neither Does Endometriosis” I was overwhelmed with such lovely messages from some amazing people

Wow, there really is so many people out there suffering this horrible disease. As I said, I had someone very special and dear to me that was riddled with Endometriosis and put up with it for 20-30 odd years. It was so bad and luckily I was able to help her get it sorted properly.

I help people with endometriosis everyday. I know how it effects you physically, emotionally and on every level possible. It is such a terrible disease to have. I also know many people who have it don’t know they do have it until that start to try and have a baby. Then they come and see me and we find it. Many people are asymptomatic (no symptoms).

Unfortunately when it comes to endometriosis we really only hear about those who have the really have the bad pain. Unfortunately so many of you who have read this, or have contacted me about this, have the pain side of it.

But please take heart, you can get your life back with the right treatment. I do know many of you aren’t seeing the right people, or not getting the right treatment for this. So many of you get overlooked, or passed over, or misdiagnosed, or even just plain old ignored. It is disgusting and should never happen

Endometriosis really does require a multi modality approach to treat it and help manage it properly though. There really isn’t one thing, or a magic pill. I wish there was. I wish I could give you all that.

Through many years of studying this, years of treating this and just knowing what to do and what works and what doesn’t, is why I know this disease well. Endometriosis needs a multimodality/team approach to manage it effectively.

There is no magic pill. You really do need to look at the individual, assess that individual and then use a multi modality approach with everything from diet changes, lifestyle changes, help with emotions, help with the acute pain etc and really look at what is fuelling the pain and fuelling the endometriosis. The number one diagnostic and investigation for endometriosis and to help with acute pain will always be a laparoscopy too.

I do know it is hard for you all. I really do. Not everyone knows how to treat this properly and manage the symptoms properly as well. I wish they did. I really do. I know many of you have said you have tried everything and many times I find out your haven’t, or may have only just tried a few things in combination. You need to do it all properly and at the same time.

Some of you have really just seen the wrong people, been given the wrong advice and really just seen a crappy specialist, or surgeon. It really saddens me. So sorry for you that have. I really wish I could help all of you.

I do know many women who say they got relief from the hysterectomy and I have to say I sometimes have to tell people that only they can make this decision,  if it is really affecting your life. But I do need to let women know that hysterectomy ‘Does Not’ cure endometriosis. It will cure adenomyosis, but not endometriosis. Endometriosis is not in the uterus, so taking out the uterus is only going to help adenomyosis and also stop period related symptoms.

But if you are going to have a hysterectomy you need to know the facts and know that endometriosis will still be there.Sometimes the endo has really spread to other parts of the body so hysterectomy really doesn’t solve that at all.

If you are going to do any surgical intervention, it needs to be done by a good surgeon who is an advanced trained laparoscopic excision surgeon. It also needs to be done intravaginallly and via laparoscopy. That is how I make sure my patients get it done. Sometimes that is not always possible, but when it is, that is the better option.The recovery is much better and there is less impact on them and their body. It is hard to make those decisions though.

It is hard to help from afar, but if you do want my help, I do online consults so I could help you. I do help and assist people all over the world and online platforms (zoom, skype) now offers a medium to do that.

I can’t give advice over the internet because of legal and professional ethical reasons, so I do need to see people, or at least Skype them to be able to give advice. It needs to involve a consultation.

It is so much easier if I can see you in person, especially those that live here in Australia. Flights are cheap these days and I have the best surgeons and team working with me. I really do have the best endometriosis surgeons as part of the team I work with.

I know how hard this must be for you, a very special loved one had very bad endometriosis as well. Luckily now, with the right treatment and after 30 odd years of getting nowhere, she is finally feeling better.

If you would like to book in a consultation with me, please call my friendly staff, or using the automated emails system on the website. Let me hold your hand and care for you and assist you in every step of the way to better health and a better way to live daily.

Please take heart. Know that you are not alone.Know that there really is help out there. I know this disease can be beat with the right treatment. Know that I hear you and what you are going through and will always be here to help educate people about this disease and hopefully find a cure to this horrible disease one day.

Looking forward to helping you if you need my help and pointing you in the right direction

Regards

Andrew Orr

-No Stone Left Unturned

-Women’s and Men’s Health Advocate