A lot of the information about endometriosis, is more about it’s symptoms, time to diagnosis and future fertility outcomes. While it is necessary to educate people about these things, nobody is really talking about the serious complications of unmanaged endometriosis. This is not to scare people, or create fear, but at the same time it does need to be talked about and for all concerned to know how serious this disease state can be at its worst.
We know that many women are missed and dismissed when it comes to endometriosis. It often takes up to 10 years, or even more for some women, before they are definitively diagnosed. Some women are never diagnosed and end up suffering a terrible life because of it. Some women with endometriosis are asymptomatic (meaning no symptoms) and often only get diagnosed as part of fertility evaluation, when they may be having trouble conceiving.
The symptoms of endometriosis are easy to see
The symptoms of endometriosis are very easy to see, if someone knows what they are looking for and knows the right questions to ask. Sure, a definite diagnosis via laparoscopy is still needed, but there are some very clear-cut pointers that a woman may have the disease. But due to lack of education and lack of true experts in this area means that lots of women are missed and dismissed, and that is a fact.
The vicious cycle of mismanagement
But while there are inadequacies in the healthcare profession when it comes to endometriosis, not all mismanagement can be blamed on healthcare professionals. There are people who are not seeking proper help soon enough, and some not at all, and this can lead to long-term complications too. We also have women trying to manage their own disease through advice of friends, social media groups and Dr Google as well. This then creates one hell of a mismanaged cycle that does not help anyone.
I can see the issues from all points of view, especially those who suffer the disease. But as a healthcare professional with a special interest in Endometriosis, I have had my fair share of non-compliant patients too.
While many have been let down through mismanagement, lack of funding and education, being missed and dismissed etc, there are many women who are self sabotaging as well. I have seen many not take on advice, recommendations and proper management of their disease, that could help them, then these same people scream high and low that the system has let them down. There are some who are just happy to live with the disease, as it is their only way of seeking attention. This is a fact also and we need to talk about it.
This is what has prompted me to do this post so that all concerned get to know what the serious side of mismanaged endometriosis is. Sometimes it is only via the serious harsh side of reality, that all concerned may actually get some help and some serious attention be bought to this disease state.
The common symptoms of endometriosis
We know that many women suffer greatly at the hands of this disease. Women with endometriosis can get the follow common symptoms:
- Period pain
- Pain with intercourse
- IBS like symptoms
- Gastrointestinal issues
- Chronic constipation
- Chronic diarrhoea
- Pain on bowel movement
- Bleeding from the bowel
- Chronic abdominal pain
- Severe bloating (endo belly)
- Chronic bloating
- Aversion to foods (even if they are not the trigger)
- Ovulation Pain
- Ovary pain
- UTI like symptoms (with no infection present)
- Migraines and headaches
- Chronic pelvic pain
- Pelvic and rectal pressure feeling
- Musculoskeletal pain
- Chronic nerve pain
- Fluid retention
- Iron deficiency
- Mood swings
- Mood disorders
- Other symptoms
Early intervention and management is crucial
Women’s lives are greatly impacted by this disease and it is important that not only healthcare professionals understand this but also sufferers of the disease. Early intervention and proper ongoing management is the key to helping this disease and everyone needs to be aware of this. Being missed and dismissed, or waiting too long to help, can really have some serious consequences if this disease is left to grow and spread and cause serious damage in the body
The serious consequences of mismanaged/unmanaged endometriosis
While we have talked about the common daily symptoms that many can put up with, we also need to bring attention to just how serious this disease can get. Let’s face it, it can and does spread like cancer and it can spread to every organ in the body. It has been found in the joints of bones, fingers, in the liver, around the lungs, around the diaphragm, around the heart, on the bowels, on the bladder, on the ovaries, on the pelvic, in the fallopian tubes, one the retina in the eyes and it has even found in the brain.
There is no doubt that this disease can be very devastating for anyone who has it, but what happens in the worst cause scenario, if it is left unmanaged.
The following can be serious complications of unmanaged endometriosis:
- Haemorrhage from the ovaries
- Ruptured ovaries
- Ovarian torsion
- Obliterated fallopian tubes
- Ruptured endometrioma
- Endometrioma infection
- Pelvic infection
- Obliteration of the pelvic cavity
- Compacted bowel
- Obstructed bowel
- Perforated bowel
- Bowel haemorrhage
- Torsion of the bowel and intestines.
- Ureteral Obstruction (Blocked ureters)
- Renal infection
- Bladder obstruction
- Painful bladder syndrome
- Severe adhesions
- Significant scar tissue build up
- Significant fluid build up in the pelvic cavity.
- Multiple organs adhered together
- Diaphragmic adhesions
- Liver damage
- Perihepatic adhesions
- Pericardial endometriosis
- Cardiovascular events
- Chronic nerve pain
- Pudendal nerve neuralgia.
- Chronic musculosketal, or spinal pain
- Arthritic like pain and associated symptoms
- Chronic Migraine and neurological events.
- Malignancies and cancers (rare but more research being done)
- Recurrent miscarriage
- Absolute infertility
- Opioid dependency and addiction
- Death from opioids medications
- Complications from medications and hormonal treatments
- Psychotic disorders
- Suicidal tendencies and thoughts
- Death (rare from endometriosis directly, but can be from associated factors related to endometriosis and also taking ones own life)
Women with endometriosis need to see an “Endometriosis Expert”
This is why endometriosis needs to be managed properly and managed by a healthcare professional that specialises in the management of endometriosis and associated symptoms. You need to see and Endometriosis Expert.
People cannot treat, or manage the symptoms of endometriosis on their own. This is why it is so important to have the right care and also have a multimodality/team approach to endometriosis. No amount of google searching is going to help people treat endometriosis on their own. You need to find an endometriosis expert.
At the same time more education needs to be given to GP’s and other healthcare professionals about endometriosis. Too many women are being missed and dismissed because of lack of practitioner understanding and education at the front line. Women need to see healthcare professionals that specialise in endometriosis and endometriosis experts for this disease, not just a GP. Women also need access to advanced trained laparoscopic surgeons who specialise in excision surgery, not just a regular gynaecologist who is not advanced trained. I have talked about this often.
Endometriosis is not just about period pain
Lastly, we need to educate ‘all’ that endometriosis is not just about period pain. Endometriosis can present with many different signs and symptoms ranging from gastrointestinal symptoms, extreme bloating, bladder issues, bowel issues, IBS symptoms, migraines, fluid retentions, pain with intercourse, pain on bowel movement and so many other symptoms mentioned before. There is also the long-term impact on fertility for up to 50% of women too.
This is why early intervention and management of teenagers presenting with the disease symptoms is crucial. The longer the disease is left, the more damage it can do and all women deserve to be mothers (if they chose) and deserve a normal happy life. We also need to recognise the psychological impact of the disease and how this can present in someone with the disease as well.
Women are dying because of being mismanaged/unmanaged
Let’s face it, there are women dying because of this disease. Maybe not as direct result, but definitely indirectly. No woman should ever be pushed to the point where she cannot handle her pain and symptoms any longer and be only left with the choice of taking ones own life. This is exactly we need to bring more education to all about this disease. This means both healthcare practitioners and people with the disease itself too.
People need to be managed properly and by professionals. We need to start bring education and attention to this, so that people do not try to manage this disease on their own, and practitioners are held more accountable for dismissing women as well. Because if we don’t the complications of this can be very severe and sometime they can be fatal also.
Endometriosis awareness month is next month and I want to see all women with endometriosis being managed properly and seeking the right help. There are endometriosis experts out there who can help you if you have the disease and the associated symptoms. No woman should be doing this on their own.
Let me help you
If you so need help with managing endometriosis and the associated symptoms of endometriosis, please give my staff a call and find out how I can assist you. I have options for in-person consultations and online consultations. I use a multimodality/team approach and I also work in with some of the best medical healthcare professionals and surgeons in the country. I will always make sure you get the best care, best support and best management possible. I will also hold your hand every step of the way and make sure your every concern is listened to as well.
-No Stone Left Unturned
-Master of Women’s Health Medicine
-The Endometriosis Experts