It’s true!  One in ten women struggle with this condition.  

Yet with so little still known about the disease, it’s so easy to get confused by different claims and myths around it.  Here’s my take on the main nuggets of (mis)“information” that you may hear when you’re on your endo journey.

IT’S JUST BAD PERIOD PAIN.

Probably one of the first myths you’ll hear, and sadly not just from friends and family but this is also something I’ve known to come from the mouths of some in the medical profession.  Which beggars believe in this day and age;  when the very people you turn to, probably after years of symptoms, gaslight you and your symptoms.   Endometriosis is not “just a bad period”.  I mean yes, it’s a bad, bad period but it is so much more than that.   Did you know that period aren’t meant to be painful?   A small amount of cramping for one or two days, maybe, but anything over and above that isn’t right.   It doesn’t mean you’ve got endometriosis but it does mean that you may need to do a bit of investigation as to why you’re experiencing this pain.   

I know the pain I’ve experienced from my endo is almost indescribable.  (Apologies if you’re eating…)  I always describe the pain as if someone has a coat hanger wrapped around my uterus and is simultaneously twisting it and pulling it down.  And that isn’t just pain in my abdomen; there’s also pain right down my right leg and into my lower back.    And that’s just the pain at menstruation – there’s also a lesser pain mid-cycle, too. 

And that’s just the pain – there’s also the bleeding.  (Again, apologies if you’re eating)  Did you know that ‘healthy’ menstruation is bring red blood, without any clots? Not too heavy?  Maybe lasting a few days?   Well with endometriosis, not only is the blood dark and full of clots but it can go on for days. 

So yes, it’s kind of a really, really, REALLY bad period.  But calling it such diminishes the symptoms of endo beyond recognition – inferring that it’s something that will pass, something that other women wouldn’t worry about or something that is fundamentally normal (and beautiful).  It is none of these.   That’s like saying that a brain tumour is just a bad headache.   

There’s no cause.  Everything has a cause.  It’s just that Western medicine can’t pinpoint an exact cause just yet.  The trouble with this myth is that is adds a sense of hopelessness to the list of crappy mindset stuff you’re already feeling.   It DOES have a cause – there is a reason you’ve got endometriosis.  Eastern medicine may explain it (I totally believe it does).  Even if you don’t know or believe what your cause is, there is a cause and you can get to the bottom of it.

If you have minimal disease, you’ll only have minimal symptoms.  I have never really been able to figure out why endometrioses has been classified like it has.  Its classifications suggest a progressive illness, or at the very least an illness that gets more severe in different classifications.  But it really isn’t.  

I was diagnosed with stage 2 endo in my mid-20s.  There are four stages, with stage 1 being classed as the most ‘minimal’ endo and stage 4 the most ‘impactful’.   I couldn’t fathom how I could be experiencing the levels of pain and fatigue I was experiencing (amongst other stuff) when I “only” had stage 2.  I was almost embarrassed to admit it was stage 2 because, to my layperson’s mind, it sounded to me like it wasn’t much at all.  It was almost like it was adding fuel to the “just a bad period” fire.  

Endo doesn’t work like that, though.  Stage 1 is almost a different illness to stage 4; it simply denotes the amount of endo and the existence of other issues like cysts and adhesions.   But stage 1 endo can be more painful than stage 4 endo.  Fertility tends to be more impacted by stages 3 and 4, yet my laparoscopy showed endo on my ovary and I was told that this did impact on my fertility.  So no, the ‘stage’ of your endo has NO link at all to the symptoms you experience.  

PREGNANCY IS A CURE FOR ENDO.  

There is kind of a shred of truth to this in that, for some women, pregnancy can see the end of their endo;  sometimes it never returns sometimes it does.  But let’s be clear – it isn’t a cure and it should not be seen as a cure if for no other reason that the issue of pregnancy in itself can be a huge trigger for women with endo.  One of the first things we worry about when we get the diagnosis is the impact on our ability to conceive and to pile even more pressure on an event that is so impacted by stress and anxiety (and endo) anyway is not helpful.

In fact, the ability of women with endo to get pregnant is another myth; all too often we’re told that we can’t get pregnant with endometriosis, or that it will be really difficult.  But that isn’t necessarily true – it all depends on a range of factors:  such as what stage of endometriosis you’re diagnosed with, your age, you other symptoms and your general health.  Also, just because you’re diagnosed with a certain stage in certain places, that doesn’t mean that you can’t do something about it.   Many women have successfully reduced their “fertility-limiting” endo and gone on to have children.   Everyone is different and if you’d like to explore this avenue then it is better doing so sooner rather than later, as it can take time.  

Just because you’ve got endometriosis does not necessarily mean that you can’t have children.    And just because you may get pregnant with endometriosis does not mean that your endo will disappear. 

YOU CAN’T HAVE ENDO IF YOU’VE HAD A HYSTERECTOMY   

This is the myth that breaks my heart the most, because this is the myth that can potentially cause the most damage.  Let’s be VERY clear about this…  you don’t need to have a uterus to have endometriosis, so the removal of the uterus is not a cure for endometriosis.  For some women it can ease the symptoms but in most cases, they come back and sometimes pretty quickly.  

You can also have your ovaries removed as part of your hysterectomy, which technically lessens the risk of the endo symptoms returning HOWEVER, this puts the body into an early (and forced) menopause.  This obviously impacts on your hormone levels (that’s the point), but the knock-on impact of this is an increased risk of osteoarthritis and brittle bones, hair loss etc etc.   So most doctors will recommend a course of HRT to counteract these symptoms but guess what… that will then pump your body full of oestrogen, which will then encourage the return of the endo.  

So many women report feeling as though this is their last resort, or only option purely because their doctors simply don’t know what else to do.   This is one of the biggest travesties about our illness. 

MYTH-BUSTING THE MYTH-BUSTING

All that said, there are a couple of common “myth-busts” that I disagree with.   This is my current favourite;

YOU DON’T NEED TO GET A DIAGNOSIS TO GET TREATMENT.   

So one myth-busting website I saw (and no disrespect, because I actually really like this site), used the analogy of a car;  if you were driving down the road and your car lost power, you wouldn’t accept the mechanic just poking around trying random things without knowing what was wrong (sic) so why would you do that with your body.   Agreed in so far as Western medicine goes HOWEVER, with “massively improved” waiting times for endo diagnosis still averaging over 7 years, why on Earth wouldn’t you try to get better during this time?  

I realise it’s easy for me to say this because I got diagnosed 20 years ago.  I had no first-hand experience of alternative or Eastern medicine at this point and all of my skills and knowledge has been gathered since my diagnosis.  I can’t say how I would have felt at the time if someone would have said I could get rid of all the pain, the bloating, the bleeding and everything else before I got the diagnosis.  Now?  Well, I wouldn’t hesitate but I’ve had 20 years of successes, learning, appreciation and witnessing the impact Eastern medicine can have.

So in regard to this myth – it’s TRUE you do not have to wait for your diagnosis to seek help.  It’s not the same as a car because Eastern medicine doesn’t need work on a diagnosis basis – it uses your symptoms (ALL of them) to identify the root causes itself.  As a Therapist, I would follow exactly the same processes and protocols whether you had your diagnosis or not.  So it makes little difference to me if you’ve been diagnosed with endometriosis. 

The risk is that your symptoms clear before you get your diagnosis, so you may never formally have had endomitosis.  Are you happy with that?  That has to be your own, personal choice.  But at least you know you have a choice…

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Michigan State University researchers have identified a potential genetic target for treating an especially painful and invasive form of endometriosis.

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Living with my diagnosis since the age of 15

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A woman went through an artificial menopause at the age of 19 to help treat her painful condition.

Student nurse Kia Morne, now 21, suffers with endometriosis.

It’s a gynaecological condition where tissue similar to the lining of the womb grows in other areas of the body, most commonly, but not exclusively in the pelvic region.

This tissue responds to hormones in the same way as the lining of the womb but, with no outlet, it can cause inflammation, scarring and adhesions, leading to severe pain and many other symptoms.

Kia started having symptoms when she was 14, before her periods came at 15, when she suffered with abdominal pain, nausea and bowel problems.

She began fainting a year later, due to heavy bleeding during her period.

Over time doctors misdiagnosed Kia with food poisoning, allergies and irritable bowel syndrome.

The classic symptoms of endometriosis include severe pain during or between periods, very long, heavy and irregular periods, bowel and bladder problems, back and leg ache, and pain during or after sex.

Extreme fatigue is very common and fertility may also be affected. Misdiagnosis is common, resulting in delays to accurate diagnosis, unnecessary tests, and sometimes unnecessary surgery.

But Kia was finally diagnosed when she was 19 after switching to a female GP and undergoing keyhole surgery called a laparoscopy.

“There are many misdiagnoses, so I felt a sigh of relief that my illness finally had a name,” said Kia.

She added: “Suffering with endometriosis is a continual struggle.

“You feel embarrassed the condition is to do with your periods, then you have to be believed and then you have to be diagnosed.”

In a trial and error treatment routine Kia was first put on the contraceptive pill, but it did not help her symptoms.

She was then given a course of injections that brought on a medically-induced menopause.

The use of these drugs is usually limited to six months because of the side effect of thinning of the bone, Endometriosis UK say.

The injections are GnRH analogues, with brands including Prostap and Zolodex, which are synthetic hormones that bring on a temporary menopause.

The ovaries switch off and temporarily stop producing eggs and the hormone oestrogen.

Kia felt the treatment’s full force of side effects – hot sweats, dizziness, headaches, mood changes, hair loss, bone and joint pain, skin reactions, sleep issues, fatigue, nausea, memory issues, blurred vision, bloating and swelling.

She also has hormone replacement therapy to help alleviate some of the side effects.

The only way to determine if a person has endometriosis is through a laparoscopy and excision is widely seen as the gold standard for treating endometriosis, where the disease is cut out.

Kia has now decided to have the surgery and she also wants to freeze her eggs for the future.

“It is odd to be thinking of children when it is something that I’d think about so far in the future,” she said.

Endometriosis does not necessarily cause infertility but there is an association with fertility problems, although the cause is not fully established. Even with severe endometriosis, natural conception is still possible.

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A charity is calling for more awareness of endometrioisis after 20 women from North Somerset were hospitalised with the chronic condition last year.

NHS Digital data shows Weston Area Health NHS Trust admitted 20 women and girls to hospital with a main diagnosis of endometriosis in 2018-19.

Of these, at least one was an emergency case, with a patient arriving through A&E or rushed to hospital after visiting their GP.

Endometriosis is a chronic condition where tissue similar to the lining of the womb grows elsewhere in the body, such as around the ovaries.

The tissue sheds in the same way blood does during the menstrual cycle, but it has nowhere to escape, which causes inflammation, pain and a build-up of scar tissue.

More than a million women aged from puberty to menopause are thought to be affected by endometriosis, with an estimated cost of £8.2billion to the economy.

According to charity Endometriosis UK, it takes an average time of seven-and-a-half years for women to get a diagnosis.

Chief executive Emma Cox said more awareness is needed among healthcare practitioners and the general public.

She said: “Many people don’t even realise the pain they are suffering isn’t normal after years of being told they must have a low-pain threshold and to put up with it.

“No-one should have to suffer for years, possibly losing their job and chance to have children because of endometriosis, yet, heartbreakingly, it happens all the time.”

There is no cure for endometriosis and it can be difficult to diagnose, and treatments can include painkillers and contraceptives, and in extreme cases, a hysterectomy.

The average age of patients admitted to Weston Area Health Trust in 2018-19 was 36.

The trust says the main symptoms of endometriosis are painful, heavy or irregular periods, pelvic pain and painful bowel movements.

If women find they have symptoms of endometriosis which are impacting their lives, they are advised to see the advice of their GP.

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Surgery or ART? A dearth of strong evidence reported at Campus meeting to favour specific infertility treatments in cases of endometriosis.

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Women have been urged to share their experiences of living with endometriosis to aid an inquiry launched by MPs.

Approximately 1.5m women suffer with the condition, which can cause severe pain and negatively affect quality of life.

The inquiry is by the All-Party Parliamentary Group on Endometriosis with support from Endometriosis UK, the leading national charity dedicated to the issue.

Hull West and Hessle MP Emma Hardy is the vice chair of the Endometriosis APPG.

She said: “This inquiry launched by the APPG and supported by Endometriosis UK will see patients and healthcare practitioners work together to share their experiences and advice with the Government.

“By working together, we shall be able to offer the government a list of recommendations on how to raise awareness and to treat sufferers of Endometriosis.

We need to make sure that all of the 1.5m women that suffer with endometriosis can access the right care they need at the right time and help stop the mental and physical trauma this disease can cause.”

Endometriosis is a condition that is finally gaining national attention after years of being misunderstood and undiagnosed.

It occurs when tissue similar to that which lines the uterus grows on other pelvic organs, such as the ovaries or fallopian tubes. Outside of the uterus, endometrial tissue thickens and bleeds.

These cells react to the menstrual cycle by building up, breaking down and then bleeding. However, where cells in the womb leave the body through menstrual blood, the blood caused by endometriosis has now way to escape, causing inflammation and the forming of scar tissue.

Many sufferers complain of abnormally painful periods and cramps that prevent them from going about their daily lives.

Other symptoms include pelvic pain, pain when urinating and difficulty getting pregnant.

Endometriosis is also known to take on average 7.5 years to diagnose.

Emma Cox, CEO of Endometriosis UK said: “This inquiry is a welcome opportunity for the government and NHS to get real about the impact of Endometriosis on individuals and society, and to take it seriously.

“The inquiry provides the government with the opportunity to deliver recommendations for much needed improvements for the diagnosis, treatment and support of 1.5 million women living with the disease – and reduce the suffering of future generations.

“We urge all people with endometriosis to take part in the survey. This is a huge opportunity to push for real change for people affected by endometriosis and shape the way care is delivered in the future.”

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(Reuters Health) – The AbbVie drug elagolix, already used to treat the pain of endometriosis, can significantly reduce the chances of heavy menstrual bleeding caused by uterine fibroids, according to the results of two studies reported in The New England Journal of Medicine.

Uterine fibroids are non-cancerous growths in the uterus that can cause problems such as pain, pressure, heavy periods and infertility in as many as half the women who have them. They are very common, particularly among African American women.

The elagolix treatment, if approved by the U.S. Food and Drug Administration, could give women a new option for dealing with the bleeding. Current treatment sometimes involves injections given monthly or every three months. Elagolix is a pill whose effects appear and fade much more rapidly and predictably. The new studies did not directly compare the two treatments.

“This does provide a different approach and many women may prefer that,” lead study author Dr. William Schlaff of Thomas Jefferson University in Philadelphia told Reuters Health in a telephone interview. “We know it’s effective for at least six months. If that can be prolonged, it could act as a bridge to get to menopause, where hormone levels drop naturally.”

“But if you’re 32 years old (with a fibroid bleeding problem) this may not be a bridge you want to use for 20 years,” he said. Such women may want to consider a hysterectomy or some other option.

The two new studies – which were identical – followed a total of 790 women with a menstrual blood loss of more than 80 milliliters (about 2.7 ounces) per month.

At the six-month mark, among women getting placebo treatment, 8.7% in one study and 10% in the other saw their monthly blood loss reduced by at least 50%.

When the women were given elagolix alone, the success rates were 84.1% in one study and 77% in the other.

The treatment suppresses ovarian sex hormones, increasing the odds of osteoporosis. So in some women, doctors also gave hormone therapy to compensate.

With that hormonal “add-back therapy,” monthly flow was still reduced by at least 50% in 68.5% of women in one study and in 76.5% in the other.

Add-back therapy alleviated decreases in bone mineral density caused by elagolix but it also increased the number of hot flushes in both trials, and in one trial, it increased the likelihood of spotting between periods, the researchers found.

Most side effects of the drug “were considered by the investigators to be mild or moderate in severity,” they reported.

The studies, known as Elaris UF-1 and Elaris UF-2, were financed by AbbVie, which sells the drug under the brand name Orilissa.

The 300-milligram twice-daily elagolix treatment would cost more than $47,000 per year, according to prices on goodrx.com. In contrast, monthly leuprolide injections, which are an established treatment, costs roughly $7,000 per year.

Compared with placebo recipients, elagolix recipients with add-back therapy also had higher levels of the oxygen-carrying protein hemoglobin in their blood and were more likely to have their periods cease altogether.

They also tended to score higher on quality of life questionnaires.

Schlaff, who chairs the department of obstetrics and gynecology at Thomas Jefferson, predicted that if the drug is approved for fibroid bleeding, it will change the way women are treated.

“A lot of women want to use oral medication” instead of periodic injections, he said. “Women are going to say, ‘I don’t want to commit to a 1- or 3-month dose.’ Or they may want to start with one and move to another.”

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Stem cells responsible for repairing the womb following menstruation can also promote endometriosis and endometrial cancer if they become dysfunctional, researchers have found.

Such malfunctioning stem cells also can reduce the chances of success for women undergoing in vitro fertilization (IVF), the study shows.

The researchers’ findings were reported in “Endometrial Axin2+ Cells Drive Epithelial Homeostasis, Regeneration, and Cancer following Oncogenic Transformation,” a study published in the journal Cell Stem Cell.

Using a technique called in vivo lineage tracing in female mice, investigators from the Hunter Medical Research Institute in Australia and their colleagues discovered that stem cells located at the base of special glands found throughout the inner lining of the womb (endometrium) are responsible for replenishing the endometrial tissue that is lost during menstruation.

In vivo lineage tracing is a technique that allows scientists to label and follow specific cells inside an organism. In so doing, the team discovered these stem cells contained high levels of a gene called Axin 2, which has been found to be active in cell types from other highly regenerative tissues.

When the researchers specifically destroyed Axin 2-positive stem cells in the wombs of female mice, they found the endometrium was no longer able to repair itself and became highly dysfunctional. Moreover, when investigators introduced cancer-associated mutations into these stem cells, the cells started to malfunction and to fuel the development of endometrial cancer.

“What we are able to show is that if you cause mutations in these cells, you get endometrial cancer,” Pradeep Tanwar, PhD, lead researcher and senior author of the study, said in a news story.

“What we now hypothesise is that when women have endometriosis, what they have is an expansion of these mutated cells. These cells end up going into the abdominal cavity. Because they are so highly regenerative — because these are the cells that are repairing the uterus in each cycle — they start making uterine-like tissues in the abdominal cavity — which is what endometriosis is,” said Tanwar, also an associate professor at the Hunter Medical Research Institute.

Tanwar also believes the malfunction of these stem cells could be the reason why women undergoing fertility treatments fail to conceive.

“Some women have repeated failed IVF cycles because their endometrium is too thin, and the embryos cannot implant,” he said. “We now know that these cells in these women are going to be defective, and that is why the repair is not happening properly,” he said.

The Hunter researchers spent seven years “exhaustively testing” their findings, Tanwar said. He said they collected and banked gynecological tissue samples from hundreds of women treated at the center.

Given the wide implications of these findings, many scientists around the globe have reached out to congratulate the team on their discovery, he said.

“There have been so many questions about these conditions, and this has given us a framework to start addressing those, and — hopefully — come up with some answers,” Tanwar said.

“There is huge potential in the study, and there is huge potential in what we are doing. This cell is affecting many of these gynaecological diseases, which are mainly uterine based,” he added.

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Endometriosis is a chronic pain disorder that affects an estimated 1 in 10 women around the world between the ages of 15 and 49. Yet, despite the disorder’s prevalence and often debilitating pain, women suffering from it tend to be either dismissed or offered a limited number of treatment options. 

But a new study from researchers in Spain may change that. The research team has demonstrated, using a mouse model, that a moderate dose of THC could not only reduce pain associated with endometriosis, but could even be effective at reducing internal cysts associated with the disorder.

Not a Modern Medical Mystery 

While discussions of endometriosis may have become more common in recent years, with women voicing their first-person accounts of the disorder, the disease itself is far from new. Descriptions of the disorder appeared in medical texts as far back as the late 1800s, and despite a better modern understanding of what causes endometriosis pain — the inflammation of endometrial tissue that has grown outside of the uterus on a woman’s ovaries, bowels, or pelvis — the cause of endometriosis itself is still unknown.

As for treating the disorder, women often face challenges from the start, not only because endometriosis symptoms present similarly to other disorders, like pelvic inflammatory disease, but also because endometriosis pain is often dismissed as merely menstrual pain. After diagnosis, treatment options for endometriosis range from over-the-counter pain relief, like ibuprofen, to hormone treatments to, in severe cases, hysterectomy.

Mice and Medical Marijuana 

In search of better options, a team of Spanish researchers turned to mice and the psychoactive component of marijuana — THC. 

“With a lack of effective treatments, women with endometriosis usually rely on self-management strategies,” the study’s senior author Rafael Maldonado, Professor at the University Pompeu Fabra of Barcelona, Spain, said in a statement. “Although cannabis comes with a large number of potential side effects, its medicinal properties could provide pain relief in endometriosis and other conditions.”

The researchers implanted endometrial tissue around the pelvis of an experimental group of female mice, in order to mimic endometriosis symptoms, and left a control group of mice untouched. As with endometriosis in women, the afflicted female mice began to demonstrate pain and anxiety symptoms, as well as cognitive impairment and the development of endometrial cysts. Once these symptoms were established, both groups of mice were given daily 2mg doses of THC over a 28-day period. 

More Than Pain

The team found that the mice with endometriosis experienced decreased pain in their abdomens as a result of their THC doses, as well as lessened cognitive impairment. While this study certainly isn’t unique in connecting cannabinoids with pain relief, the team did find another surprising effect of the THC dosage: cyst inhibition. The researchers found that endometriosis mice had smaller endometrial growths after completing the THC regimen. 

Swing and a Miss 

Despite the promising results of the study, the researchers were still unable to determine THC’s effectiveness in several key areas of endometriosis, including anxiety, fertility, painful intercourse and extreme menstrual cramps. However, following this study the researchers have partnered with the Gynecology Service of the Hospital Clinic of Barcelona, Spain, to begin conducting clinical trials of this approach in women with endometriosis. 

With any luck, positive results from this impending clinical trial could finally spell relief for the tens of thousands of women suffering from endometriosis.

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Endometriosis is a painful condition where the lining of the uterus grows on other parts of the organ such as the fallopian tubes. The new study, published in eLife, shows initial results from treating endometriosis in mice with cannabinoids – suggesting they can alleviate symptoms of the disease.

The researchers say this new finding will pave the way for further clinical research.

The findings have led to the start of a clinical trial in collaboration with the Gynecology Service of the Hospital Clinic of Barcelona, Spain. The trial will evaluate the possible benefits of the naturally occurring cannabinoid ∆9-tetrahydrocannabinol (THC; the main psychoactive constituent of the cannabis plant) in women with endometriosis.

Endometriosis cannabis treatment

Endometriosis is a common, chronic and painful disease caused when the lining of the womb – the endometrium – grows outside of the womb cavity. These growths affect reproductive organs and can cause pain, infertility, anxiety, depression and result in a considerable impact on quality of life. Treatment options include surgery or hormone therapy, but these are not always effective and often have significant side-effects.

Rafael Maldonado, Professor at the University Pompeu Fabra of Barcelona, Spain, said: “With a lack of effective treatments, women with endometriosis usually rely on self-management strategies like dietary changes or exercise. Although cannabis comes with a large number of potential side effects, its medicinal properties could provide pain relief in endometriosis and other conditions.

“Since medical THC is available in some countries, the findings of our study may be of interest for gynecologists and pain specialists who manage the treatment of women with endometrial pain.”

THC improves symptoms and growths

The team studied mice with endometrial implants in their pelvis to mimic endometriosis in humans. Those with the implants were more sensitive to pain in their pelvis that can also be associated with emotional and cognitive alterations – similar to symptoms seen in some women with endometriosis.

The team next found that mice with endometriosis had similar anxiety-like symptoms experienced by some women with the condition. This was measured by the amount of time the animals spent in open areas of a maze, as those with higher anxiety levels tend not to explore too far. However, their experiments could not reveal whether THC had any significant effects in treating this anxiety.

As endometriosis can be known to impair cognitive function in some women, the team also studied memory performance in the mice. They provided the animals with two identical objects and allowed them to become familiar with them. They then replaced one of the objects and timed how long the mice spent exploring the new versus familiar object, to give an indication of what the animals remembered.

The team found that memory was impaired in the mice with endometriosis compared with those that did not have the condition. However, mice treated with THC did not show this impairment, suggesting that THC may have a protective effect.

Finally, the team studied the effects of THC on the endometrium inside and outside of the womb, and found that mice with endometriosis treated with THC for 32 days had smaller endometrial growths.

First author Alejandra Escudero-Lara, a PhD student at the University Pompeu Fabra of Barcelona, said: “Together, our findings show that THC limits the development and symptoms of endometriosis in an experimental model, and highlight the interest of conducting further research to ensure the safety and beneficial effects of this treatment in women with endometriosis.”

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Affecting up to 100,000 women in Ireland, endometriosis is a gynaecological condition which causes pelvic pain and in some cases infertility. It can be difficult to diagnose and many women suffer for years before receiving treatment.

Caitríona McCormack has experience of this, she went through many years of crippling pain before finally being diagnosed.

“I had my first symptoms when I was 22 years old – I suffered with excruciating pain and ended up in A&E more times than I can remember,” says the Kildare woman. “They couldn’t tell me what was wrong as nothing showed up in my bloods or x-rays. I didn’t like taking painkillers because I believed they were bad for the body but seven years later I was still in an out of my GP every other week and eventually a friend saw me curled up on the sofa with a hot water bottle and said I needed help.

“I think I had become so used to the pain that it became my norm. But it was affecting everything, my hormones were up and down, and I was having mood swings. It affected my relationships with my family, boyfriend and my work was suffering. Until that point, I just kept going and didn’t see anyone when I was in a bad way, so I don’t think people really knew how bad things were.”

McCormack took her friend’s advice and sought medical help. After a laparoscopy and hysteroscopy, she was diagnosed with endometriosis and pelvic congestion syndrome. And while the initial treatment alleviated some of the pain she was going through, it didn’t last long.

“The doctor removed some endometrial tissue during the procedure, and I had some relief for about a year, then the symptoms worsened again,” says the 47-year-old. “I was prescribed the pill to help with the symptoms as well as different painkillers and anti-inflammatories. I was told that they would work, but they didn’t, and I ended up many more times in A&E over the years in dire pain. I put on morphine which finally took the pain away but the side effects (debilitating migraines and nausea) were dreadful – so I couldn’t take it.”

Things began to get worse for McCormack who developed a cyst on her uterus which was removed. But a week later, while visiting a friend in the UK, she haemorrhaged and was rushed to hospital. She lost so much blood that she was bedridden for a fortnight and the whole experience sent her body into shock and triggered depression.

360 degree turn of events

This episode preceded several more years of living with constant pain while trying a string of alternative treatments to try and bring an end to her suffering.

“For years I had continuous acupuncture and physiotherapy, tried Chinese herbs, pain management and healings from various types of healers all over the country but none of it really helped or worked,” she says. “Also, no one really talks about the financial aspect of being sick and self-employed in this country – most are too embarrassed I suppose – but the pressure was immense.

“I had two more laparoscopies and then five years ago it was time for a hysterectomy. This was the last option which I was trying to avoid at all costs. I still wanted children and I had met a few women at endo (endometriosis) conferences who had hysterectomies but are still in daily pain.

“My dream of having a family, even one child, was over. My relationship had finished, and I was too sick to be in another or take care of anyone else, much less a baby even if I was able to conceive. The grief of never having a baby was intense. I had to stop working, I just couldn’t do it anymore and was totally exhausted so I had to find a road to healing. I felt like my life was passing me by and I had no compass, no control over what was happening, it seemed like there was no light at the end of the tunnel and no end to this nightmare.”

McCormack says depression, anxiety and panic attacks became part and parcel of her life. “My first panic attack happened when I couldn’t drive after getting into the car – me, the one who travelled fearlessly around Europe on her own,” she recalls. “The constant pain kept me awake at night, so that combined with the cocktail of medication was taking its toll on me and mentally I was really struggling. I had always been a go getter and as a young girl loved to dance, run and play tennis – and I was a brown belt in Karate. Now I spent most of my time in bed, a 360 degree turn of events – it was pretty soul destroying.”

Before endometriosis, McCormack had loved yoga and now at an incredibly low ebb, she decided to give it another go. “One day I dragged myself to a restorative yoga class with others who were ill with cancer, arthritis, fibromyalgia and other illnesses,” she says. “After the class my pelvic pain had eased, I had forgotten how powerful yoga is. I continued going to the class and got back on to my mat at home, doing various breathing practices to help relax my body and support and strengthen my mind.

“I continued my daily practice in tandem with counselling, a healthy diet which supported my liver, daily herbal supplements and doing reiki on myself as I’m a reiki master – and I gradually started to improve.”

She now runs Yoga Ireland and Authentic Reiki Tera Mai (in Dublin and Kildare). “I still have my bad days, but they are vastly reduced, and the pain is much less. My hormone balance, mental health and mood are all much improved and if I feel unwell, I do some breathing and mindfulness which helps me cope and I always feel better and more energised for it.”

Lucille Cassidy from Dunfanaghy, Co Donegal is a chartered physiotherapist as well as both a Pilates and yoga teacher. She runs Sandhill House, a retreat centre for health and wellness. “I now see my yoga practice as an opportunity to breathe deeply, move consciously in a way which feels good and to use the movement as medicine to nurture all parts of myself; body, mind, heart and soul,” she says.

“Aches and pains are eased, muscles and joints are lengthened and after a yoga practice, I always feel more grounded, calm and relaxed. It soothes my nervous system, balances my energy and helps to relieve stress and tension.”

What is endometriosis?

– Endometriosis is a gynaecological condition which causes painful periods, pelvic pain and sometimes infertility.

– It affects up to 100,000 women in Ireland and is commonly found on the ovaries, behind the womb and close to the bowel.

– Like the lining of the uterus, it bleeds during a woman’s period and this can cause pain.

– Endometriosis on the ovaries can lead to ovarian cysts and severe endometriosis can cause pelvic scarring and adhesions – this makes the pelvic organs “sticky” so an ovary can get stuck to the back of the womb or the bowel can become attached to the ovary or womb.

– Treatment includes surgery and medication.

The post Living with endometriosis: ‘My dream of having a family was over’ appeared first on MyMedicPlus.

An estimated 11 percent of women between the ages of 15 and 44 are affected by endometriosis, a painful disorder in which tissue that normally lines the uterus grows outside the uterus. “The tissue often travels backwards from inside the uterus, through the fallopian tubes, into the pelvis and becomes trapped in the pelvic cavity,” Dr. Edward Tangchitnob, an OB-GYN with Emanate Health in Southern California, tells SheKnows. “[This can] lead to scarring, inflammation, and cysts.”

Although the illness is different for everyone, some of the most common symptoms are painful periods and bleeding between periods. There are four stages of endometriosis, with stage one being “minimal” and stage four being “severe.”

To help understand the differences between the four stages of endometriosis, we spoke with women’s health experts about how the symptoms vary and how the different stages affect the women diagnosed.

Stage One

Based on surgical findings as set forth by the ASRM (American Society for Reproductive Medicine), Dr. Rebecca Brightman, a private practice OB-GYN in New York and educational partner for SpeakENDO, explains that stage one is considered “minimal disease.” Women with stage one endometriosis have small implants and lesions, and minimal scarring or adhesions.

“It’s important to note that women may feel severe pain and discomfort in this stage, along with stage two,” says Dr. Tangchitnob.

Dr. Brightman also emphasized that just because stage one is considered “minimal,” it certainly doesn’t mean it’s painless. “The stage of disease or extent of disease does not always correlate with the degree of symptoms,” she tells SheKnows, adding that women with stages one and two can be severely impacted by the symptoms of disease.

Stage Two

Dr. Brightman says stage two is also considered minimal “with implants collectively measuring less than 5 cm and confined to pelvic organs.” In women with stage two endometriosis, adhesions are minimal if present.

Doctors may find more implants deeper in your body compared to stage one, according to Dr. Tangchitnob.

Stage Three

Stage three is considered “moderate.”

Dr. Tangchitnob says doctors will likely find deep implants in this moderate stage, in addition to an endometrial cyst or two on at least one ovary. “These are called ‘chocolate cysts’ since they are filled with endometriosis fluid and blood,” he explains. “These cysts are caused by endometrial tissue that attaches to the ovary, shedding blood and tissue.”

In women with stage three endometriosis, doctors may also find filmy adhesions, or bands of tissues, binding your organs together when they shouldn’t be connected. “Many think that this binding could cause the stabbing pain and nausea that many women cope with,” Dr. Tangchitnob tells SheKnows.

Stage Four

Stage four endometriosis is considered severe. “Women [with stage four endometriosis] may have at least one large ovarian cyst, along with a large number of dense adhesions that we typically find throughout the pelvic region,” says Dr. Tangchitnob. He notes that doctors also continue to find deep endometriosis implants in this stage and the pelvis often appears so scarred that the gynecologic organs are no longer mobile, possibly leading to issues with fertility and pain.

The Bottom Line

As Both Dr. Brightman and Dr. Tangchitnob emphasized, the stage of the illness doesn’t directly correlate with the severity of the symptoms. Women with stage one endometriosis may experience extremely painful symptoms, so they should never be dismissed simply because their diagnosis is classified as “minimal.”

While endometriosis causes excruciating and sometimes debilitating pain for certain patients, Dr. Brightman adds that many women with the illness are asymptomatic. “The diagnosis of endometriosis is sometimes made as an incidental finding at the time of surgery or evaluation for other medical problems,” she notes.

Although there isn’t a direct correlation between stage and symptoms, Dr. Brightman explains that women with advanced stages of endometriosis may be more likely to experience severe pelvic pain, as well as urinary and gastrointestinal symptoms, during menstruation.

“They may have irregular menstrual bleeding as well,” she says. “While the extent of disease doesn’t always correlate with infertility, those women with advanced disease may be more likely to encounter problems with fertility.”

If you’re experiencing symptoms associated with endometriosis, Dr. Brightman emphasizes the importance of being open with your doctor so you can work together on an individualized treatment plan that includes treatment options, goals, symptom management, and how to integrate treatment into your day-to-day life.

“Women often experience endometriosis symptoms differently and everybody’s needs are different. It may feel uncomfortable discussing these topics with your doctor, but it’s important that you feel empowered to do so, especially since endometriosis can easily go undiagnosed,” Dr. Brightman tells SheKnows, noting that it can take up to ten years to receive a proper diagnosis.

The post The Four Different Stages of Endometriosis, Explained appeared first on MyMedicPlus.

Endometriosis is known as a painful disorder in which the tissue that usually lines the inside of your uterus grows outside your uterus. Endometriosis involves your Fallopian tubes, the ovaries and the tissues that are lining your pelvis. It rarely happens that the endometrial tissue may spread beyond your pelvic organs.

With endometriosis, the endometrial tissue would break down, thicken and bleed with every menstrual cycle. But since the tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may develop. The surrounding tissue in your ovaries may become irritated, and they may eventually develop scar tissues and adhesions. Adhesions are abnormal bands of fibrous tissue that can cause the organs and the pelvic tissues to stick together.

Endometriosis can cause pain, especially during your menstrual period. Fertility problems may also develop. Good thing there are effective treatments available.

What causes endometriosis?

There is still no known cause of endometriosis. There is one theory that suggests that the endometrial tissue is placed in unusual locations because of the retrograde flow of menstrual tissues through the Fallopian tubes into the abdominal and pelvic cavities. The cause of this retrograde menstruation is not understood. However, retrograde menstruation is not the only cause of this painful disorder, as a lot of women who have retrograde menstruation do not have the condition.

Another possibility of endometriosis is that areas lining the pelvic organs have primitive cells that can form into other forms of tissue, like endometrium.

Symptoms

The main symptom of endometriosis is pelvic pain, usually linked with menstrual periods. Even though many experiences cramping during their menstrual cycle, those with endometriosis usually describe menstrual pain that is far worse than usual. The pain may also increase over time.

Common signs and symptoms of endometriosis include:

Painful periods or dysmenorrhea. Cramping and pelvic pain may begin before and it may extend several days into a menstrual period. You may also have abdominal pain and lower back pain.
Feeling pain during intercourse. It is a common sign of endometriosis if you feel pain during or after sex. You may also feel pain with urination or bowel movements. You are most likely to experience these symptoms while you are on your period.
Excessive bleeding. You may experience heavy menstrual periods occasionally or you may bleed between periods.
Infertility is also a sign of this disorder, endometriosis is first diagnosed in those who are seeking treatment for infertility.
The other signs and symptoms include diarrhea, fatigue, bloating, constipation, nausea, especially during menstrual periods. The severity of your pain is not necessarily a reliable indicator of the extent of the condition. You could be diagnosed with mild endometriosis with severe pain, or you could have advance endometriosis with no pain or you may experience a bit of pain.
Endometriosis is usually mistaken for other conditions that can cause pelvic pain like PID or pelvic inflammatory disease or ovarian cysts. It may be mistaken for IBS or irritable bowel syndrome, a condition that causes constipation, diarrhea, and abdominal cramping. IBS can accompany endometriosis, and this can complicate the diagnosis.
When to see a doctor

If you have the signs and symptoms of endometriosis, it is best to see your doctor immediately. Endometriosis can be a difficult condition to manage. An early diagnosis, an understanding of your diagnosis and a multidisciplinary medical team may result in better management of your disorder.

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