Gratitude doesn’t have to be saved up for the big events in life, it is something you can practice everyday. In fact, the more you begin to notice and be thankful for the small stuff, the more you are likely to begin to look out for things which bring you positivity. It’s time to learn to dwell on the good.
Why should I practice Gratitude?
You’ve had a long week at work and you feel worn out and exhausted, it can be so easy to mark it down as a crappy week. It can often be a struggle to pinpoint any positive moments and it’d be easy to mark the whole thing down as a negative. Now imagine, at the end of each day thinking about three small things that made you smile. They could be tiny moments: seeing a pretty flower by the curb, the sound of birds singing or the warmth of the first sip of coffee as you sat at your desk ready to begin your work. These are all things we can be grateful for, the tiny stolen moments that triggered a smile or a spark of warmth during a difficult day. The more you notice these moments, the more you will begin to look out for them. To make a note of them each time they happen. The more you write them down, the more you will begin to realise that the week wasn’t so bad at all, there was plenty to be thankful for.
What are the benefits?
Where to begin? The benefits are never-ending. A more positive outlook on life, a new sense of excitement for the little things, better sleep, a more compassionate nature, better moods, stronger immune systems! Practising gratitude also helps in becoming more present, to be more aware of surroundings and events happening in that moment. Rather than just drinking a cup of tea, you will start to anticipate and appreciate the magic of having the moment to yourself to drink the delicious warm mug of your favourite drink as you write your to do list at the beginning of the day. Remember to spend some time reflecting on why each moment gave you happiness, how it affected your mood and what it was about that exact moment in time that you are grateful for. Gratitude shifts the anticipation of negative outcomes to positive and creates a surge of feel good hormones including dopamine, serotonin and oxytocin.
If ‘we’ the 176 million women across the globe with Endometriosis do not fund and conduct this project then no one will.
This work needs your funding, backing, support, and umf to make a meaningful impact on the lives of women around the world. Donate today and contribute in giving the lives of 176 million women with one of the most chronically painful disease hope.
If we don’t conduct this research study and project then a positive and impactful change will never happen in our lifetime or for the next generation of women and young girls growing up and developing Endometriosis.
If we can work out what puts the disease into remission then we can be closer to realising what causes it and free women across the world from the grips of this chronic disease.
Even if you can not financially support, share this page 10 times, email it, post it, tweet it, send it to your local government, send it to that rich Auntie/Uncle, send it to a celebrity or influencer, send it to your local/national press. Together we can all make an impact.
Why does the Endometriosis Hope Study matter?
Women are taking their lives due to the condition, with a reported 50% of women with Endometriosis feeling suicidal. The Endo Hope Study is passionate that no woman with Endometriosis needs to feel neglected, at a loss with life and without hope. No more women should lose their jobs, relationships, wombs, reproductive organs, dreams, and lives because no one is funding research to investigate the factors that put the disease into remission. Factors that have been self-reported by women for centuries, but whose voices haven’t had the platform, validation or respect to be heard. The Endometriosis Hope Study is driven to find the answers and give hope back to millions of women across the world.
The Endometriosis Hope Study is a groundbreaking piece of research and is the first of its kind to investigate the common remission factors of Endometriosis in one study.
Analysing all possible factors from the fields of medical, surgical, pharmaceutical, nutritional, physical movement, psychological, alternative healing and alternative therapies. Working to harness the collective wisdom of the Endometriosis crowd to discover the answers to the question: ‘which factors put Endometriosis into remission.’ The research results will help women across the world have their voices heard and reclaim their bodies and lives from the debilitating chronic disease.
But what is Endometriosis? I hear you say
‘Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. Endometriosis can affect women of any age. It’s a long-term condition that can have a significant impact on your life.’ (NHS)
Chronic pain in your pelvic area and or back
Pain which stops you from doing your normal activities
Painful during and or after sex
Pain when peeing or pooping
Blood in your pee during your period
Heavy monthly period flow
Did you know?
Endometriosis affects 1 in 10 women around the world.
It is reported in the top 20 most painful conditions a person can experience.
It takes between 7-10 years on average to be diagnosed.
50% of women in the UK with Endometriosis end up feeling suicidal.
Women with Endometriosis lose on average 6.3 hours a week due to their disease.
In the UK the average woman over a 7 year period will lose £40,000.
The average woman with Endometriosis in the UK will lose £5,000+ a year in lost earnings due to time off work.
There is no known reported cure or treatment which puts the disease into remission in medical or academic literature.
The vast majority of Endometriosis research focuses on surgical, hormonal and pharmaceutical solutions for the symptom management of the disease.
Yet… no one is researching the 1000’s of cases reported by women who have put their Endometriosis and or Adenomyosis into remission.
There are thousands of cases self-reported by women, GPs, MDs, healers and therapists who have put the disease into remission or completely healed Endometriosis. Simply Google ‘healing Endometriosis’ and in under a second 4.4 million hits appear. Yet no one is investigating these ‘medical miracles’.
We can no longer ignore this injustice; endometriosis treatment is a matter of women’s health rights, sexual rights, and reproductive rights. The ongoing ignorance about it is simply compounding this injustice, and the Endo Hope study aims to address this.
Let us look into these injustices against woman kind further…
90% of women experience Pre Menstrual Syndrome (PMS) with many experiencing reduced fertility and chronic pain, of which Endometriosis and or Adenomyosis is one of the leading causes.
19% of the Male population experience erectile dysfunction can lead to an inability to get and keep an erection for sexual intercourse and therefore reduce fertility.
There is 5 times more funding into erectile dysfunction than there is into premenstrual syndrome symptoms such as dysmenorrhea. And on top of that, there has been £0 spent on research into finding solutions and or cures for women with Endometriosis who have chronically painful sex. So, yes, the lack of research into Endometriosis is a sexual rights violation, a women’s rights violation, and reproductive rights violation. The Endo Hope Study is working to bring these violations to the forefront and bring new knowledge, voice, empowerment, and hope into the Endometriosis arena.
What are the outputs of The Endometriosis Hope Study?
-A book titled ‘Endo Hope Study: x factors of radical remission of Endometriosis.’
-An online library of Endometriosis remission hope case studies.
-An online library of Endo Hope literature for the community to help increase their knowledge on Endometriosis and have access to the most up to date research.
-The project is looking to recruit young people and train them up as community action researchers, who will play a vital role in engaging the Dorset Endometriosis community and their networks in the study. They will be collating their stories, writing them up and uploading them to the database and website and learning how to code narratives. Providing vital opportunities to young people.
-A minimum of 50 Endo Hope podcast episodes featuring interviews with women, surgeons, healers, and therapists all sharing their experience of Endometriosis remission.
-A minimum of three journal articles that document women’s Endometriosis remission case studies.
The wellbeing and health of women and thus the health of society is in your hands…
The Endometriosis Hope study is being conducted at The University of Plymouth under a PhD. program in the School of Nursing and Midwifery, by Bridie Appleby-Gunnill MA, BA (hons), who is a woman with Endometriosis. You can read the full research proposal by clicking here>> . The Endo Hope Study has been inspired by and aims to follow a similar methodological approach as Dr Kelly Turner’s research into stage 4 Cancers radical remission factors, click here for more info >>
For further questions and donations please email firstname.lastname@example.org
“My mind is clearer and I have more energy, but the years of not being treated mean I’ve had to drop out of veterinary school and my dream career,” she said.
Anna Turley MP, a member of the All-Party Parliamentary Group for Endometriosis which will carry out the inquiry, said: “It wasn’t until I was hospitalised and had the diagnosis that I realised how little attention endometriosis receives, how limited research funding is, and how many women are misdiagnosed.”
She said the data gave “millions of affected women a voice” and the APPG would be calling on the government to act.
Tayla Marshall, 24, from Northamptonshire, is one of those who relies on pain relief to cope with her symptoms.
She has been through multiple operations and two chemically-induced menopauses and she is now addicted to strong opioid medication.
“I worry every day about my opioid intake. I take 50ml of morphine sulfate, Fentanyl patches, Naproxen and 30mg of amitriptyline and although I’m not addicted in my mind, my body is physically dependant on this now.
“If I went a day without it, I would start to experience nasty withdrawal symptoms.”
Because her condition is so severe, Tayla is considering having a hysterectomy when she’s 30.
“I have six years to try for a family,” she said.
“But my last relationship ended due to the impact of endometriosis. I wasn’t able to be intimate with my partner very often, unless I was dosed up on medication.
“I am also in a position where I have reduced chances of falling pregnant naturally and carrying a baby.
“I have sort of managed to get my head around the idea of not having children but it breaks my heart every day.”
What is endometriosis?
It is where tissue like that in the lining of the womb grows elsewhere in the body – often around the reproductive organs, bowel and bladder.
Like the womb lining, the tissue builds up and bleeds every month, but with no way to escape the body, the blood is trapped, leading to inflammation, pain and formation of scar tissue
There is no cure, but treatments can reduce symptoms
They include hormone treatment, pain relief and surgery – including hysterectomy
In the UK it takes an average of 7.5 years to be diagnosed
Emma Cox, CEO of the charity Endometriosis UK, which helped gather the women’s testimonies, said: “It cannot be overstated the devastating impact this condition is clearly having on people’s physical and mental health.
“Without investment in research, a reduction in diagnosis time – which averages at a shocking 7.5 years – and better access to pain management, women will continue to face huge barriers in accessing the right treatment at the right time.”
Some women choose to undergo a hysterectomy and early menopause in a bid to stop their symptoms.
Michelle Middleton, 42, from West Yorkshire, recently underwent the operation to remove her ovaries, womb, fallopian tubes and cervix.
She says it is her last hope: “I just want rid of everything,” she said.
But she added: “The risk is that I’m no better and that there’s damage and it gets worse but you have to have hope.”
Minister for women’s health, Caroline Dinenage said: “I urge clinicians to play their part in breaking down the ongoing stigma around endometriosis by ensuring they follow NICE guidelines and encourage employers to rise to the challenge by creating supportive and flexible ways to help those living with these conditions.”
In the second episode of The Endo Hope Podcast, I had the please of interviewing Internal Feminine Arts creator Aliya Galim. Aliya works with women to heal their womb wounds, by using the tools of Shamanism, Somatics, Kabalah and Toasism. We talk about the womb wounds of Endometriosis and how you can use these tools to reclaim your health and healing from the disease. Dont forget to like, subscribe and share, to help spread the Endometriosis Hope word with the world.
The books and practices referred too in this episode can be found in my online Endo Hope Library page by clicking here >>
You can find all of Aliya’s latest workshops, courses and retreats by clicking here>>
Sign up to my weekly newsletter to stay up to date with my work and get the latest podcast stright in your inbox by clicking here>>
In this first episode of the Endo Hope Podcast I introduce to you the work which I am doing and talk to you about the Endo Hope Study. You can click here, to read more about the study and how you can get involved and support it. Drop me a comment below with your questions. Don’t forget to like, share and subscribe so you never miss an episode.
I was honoured to have my poem (below) feature on the Hysterical Women blog (click here to visit)
‘Poem To My Surgeon’
My name is Bridie, my disease is endometriosis
You’re a gynaecological doctor, you disease is oblivi-osis
You may be qualified, experienced, and able
But that does not make you the right man on my operating table
Five surgeries in, and you tell me you’re tired of seeing me in…
I come round from my surgery and you’re looming over me
Telling me unexpectedly, that my only options are pregnancy, or face a hysterectomy…
Just give me a minute while I let this sink in…
OK, so I’m 30… single… and freaking out
No man to shack up with, no healthy womb to rent out
My thoughts obsess on finding true love and it all working out
Me, my baby, my love and no endometriosis
We ride off into the sunset with a positive prognosis
But February has arrived and no baby inside…
That milestone came so fast
Doctor… I think I have failed your task,
The year you gave me to get up the duff
Or face my womb being removed from inside of me
Is looming in my face,
And I am left feeling like a female disgrace…
1 year, 12 months, 365 days you said
But clocks ticked, loves left, and emotions became dead
But hang on…
You, doctor, have misinformed me
My options were not only pregnancy or face a hysterectomy
I feel cheated, abused and bruised by you
The year I spent feeling consumed by pressure to conceive and negativity
…I owe it all to you
I say to you Endo Sisters to read up, clean up, and improve your mood
For you are your own endo specialist
For you are your own body specialist
For you are your own life specialist
And this medical mistreatment has got to stop
For we women who suffer from endo, are not a surgery one-stop-shop
Listen to us, work with us, and help us to live our lives
For this disease is less powerful if we are enabled to thrive
So to you, doctor, I write this poem
I do not blame you, but ask you to realise and reverse your medical wrongdoing
Be part of the change, and medical suture
Join our endo movement and contribute to our future
This information summarizes what adenomyosis is, the main signs and symptoms and current ways of managing it. It is intended for those who may have adenomyosis.
What is it?
Adenomyosis is defined by the finding of endometrium (the tissue that normally lines the inside of the uterus/womb) within the myometrium (muscular wall of the womb). The cause is not known, although there are several theories. One theory is that it has a hormonal origin, another is that it may be due to disruption of the myometrium. Adenomyosis can be found in women of all ages, including adolescents. It is often found in women with endometriosis.
What symptoms are associated with adenomyosis?
Women with adenomyosis often have particularly painful and/or heavy periods (Pepas, L. et al, 2012). However, women with adenomyosis may have no symptoms.
How is it diagnosed?
Adenomyosis can be difficult to diagnose but increasingly pelvic ultrasound and MRI are being used. With transvaginal ultrasound, considerable training is needed to recognize the ultrasound pattern in the diagnosis of adenomyosis. With MRI, the findings are less dependent on the person doing the scan, but requires an observer who is expert in reporting (Dueholm 2007). Adenomyosis can be easily confused with fibroids on both ultrasound and MRI. You may want to ask to be referred to someone who is experienced in recognizing and identifying adenomyosis in imaging/radiology. Adenomyosis may be a reason for continuing pain following surgery for endometriosis.
How is it treated?
Surgery (hysterectomy) has been the conventional treatment for adenomyosis for many years. However, increasingly a medical approach is being used.
Medical treatment for adenomyosis-associated pain includes anti-inflammatory medications and hormone therapy such as the combined pill, progestogens ( oral ands intramuscular ), agonists (e.g. Zoladex and Decapetyl) or levonorgestrel-releasing intrauterine devices (LNG-IUD e.g. Mirena).
A study investigating the long term effects of a LNG_IUD concluded that it helped with relief of symptoms for up to two years, after which time efficacy decreased ( CHO 2008).
Uterine Artery Embolisation (UAE) may be an option. However, the National Institute of Health and Care Excellence (NICE) encourages further research into the effects of UAE compared with other procedures to treat adenomyosis, particularly for those wishing to maintain or improve their fertility (NICE IPG 473). UAE involves injecting small particles into the blood vessels that take blood to the uterus, via arteries in the groin. The aim is to block the blood supply to the adenomyosis so that it shrinks, which may then relieve the symptoms. During the consent process, patients should be informed that symptoms may not be relieved, that symptoms may return and that further procedures may be needed. Patients contemplating pregnancy should be informed that the effects of the procedure on fertility are uncertain.
In the last few years, there have been several studies using high intensity focused ultrasound (HIFU) ablation therapy for adenomyosis, with up to two years follow-up. All of the studies conclude that this therapy may be a safe and effective non-invasive alternative to treat adenomyosis (Wang 2009, Zhou 2011, Zhang 2013). The study by Wang suggested that the severity of symptoms correlates with the extent of adenomyosis, and that ablating sufficient volume of adenomyosis may provide greater pain relief
Magnetic resonance imaging-guided focused ultrasound (MRgFUS) has been used in a few small studies for those with focal adenomyosis. These studies suggest that clinical improvement in symptomatic adenomyosis is achievable within a short period of time after treatment with MRgFUS. MRgFUS is a non-invasive, day-care procedure, requiring no admission, and having a low complication rate (Kim 2011, Fan 2012 ). MRgFUS may be a promising alternative to hysterectomy for the patient with adenomyosis who wishes to preserve her uterus. A number of reports of successful treatment have been published that also show the feasibility of pregnancy following MRgFUS (Rabinovici 2010).
To our knowledge HIFU and MRgFUS are not performed for adenomyosis in the UK, although the latter is carried out in some cases for women with fibroids.
There have been a few non-randomized studies of conservative surgery, termed ‘adenomyomectomy’ (excision of the adenomyosis) suggesting that this may relieve symptoms while conserving the uterus (Takeuchi 2006, Sun 2011). One study (Wang 2009 ) concluded that surgical and medical treatment (GnRH agonist ) combined gave a lower symptom-relapse rate than surgery alone during the two year follow up period. Adenomyomectomy is an advanced surgical procedure and in our opinion patients considering such a procedure should ask about the experience and outcomes of the surgeon (Pepas 2012). There may be a role for hysteroscopic endometrial resection or ablation if the adenomyosis is superficial, involving less than 3 mm of the myometrium.
In our opinion greater accuracy in diagnosis of adenomyosis and increased efforts to offer alternatives to hysterectomy would be welcome.Information about alternatives should be available to patients before, during and after consultations, to assist in decision making.
References and further reading
Champaneria, R., Abedin. P., Daniels, J., Balogun, M., Khan, K.S. Ultrasound scan and magnetic resonance imaging for the diagnosis of adenomyosis: systematic review comparing test accuracy. Acta Obstetricia et Gynecologica Scandinavica 2010
Cho S. Nam A. Kim H. Chay D. Park K. Cho DJ. Park Y. Lee B Clinical effects of the levonorgestrel-releasing intrauterine device in patients with adenomyosis . American Journal of Obstetrics & Gynecology. 198(4):373.e1-7, 2008
Pepas, L., Deguara. C, Davis, C, Update on the surgical management of adenomyosis.Curr Opin Obstet Gynecol.August 2012
Original article taken from Endometriosis Foundation of America, read here
What is endometriosis?
Endometriosis is a disease that affects one of the most unrecognised parts of a woman’s life, her period. It is a very personal and intimate aspect of women’s health and can be thought of as a disease of menstruation. Endometriosis occurs when tissue similar to the lining of the uterus (endometrium), is found in regions outside of the uterus, in other words, where the tissue should not be. It affects around one in every ten women and is mostly unrecognisable, misdiagnosed, and mistreated. Currently, there is no known cause of endometriosis.
Where can endometriosis be found?
Generally, endometriosis is found in the pelvic cavity. It can attach to any of the female reproductive organs (uterus, fallopian tubes, ovaries), the uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus/vagina, and rectum. Endometriosis can also be found, though less commonly, on the bladder, bowel, intestines, appendix or rectum.
MYTH: Endometriosis can first occur
in women over 20
FACT: Endometriosis can occur when girls first experience their period3
Who is affected by endometriosis?
Endometriosis affects women mostly in their reproductive years (25-35 years old), which are arguably their most productive years, and can even affect those in their youth, starting as early as the age of 11.
What is the impact of endometriosis from a global perspective?
Endometriosis can impact all aspects of life– school, careers, finances, relationships, and overall well being. Approximately 176 million women worldwide are impacted by this disease, and an estimated 1 out of 10 women suffer in the United States, however many remain undiagnosed. Endometriosis affects women equally across all racial/ethnic and socioeconomic backgrounds.
Heavy menstrual flow
Bowel and urinary disorders
Nausea and/or vomiting
Pain during sexual activities
MYTH: Pregnancy cures endometriosis.
FACT: There is no cure for endometriosis. People usually experience a reduction of symptoms during pregnancy because of increased progesterone in the body.
What are the possible causes of endometriosis?
While multiple theories regarding the cause of endometriosis exist, there has been no proven cause that can adequately explain every aspect of endometriosis. Below are some of the proposed theories and beliefs regarding endometriosis:
Sampson’s Theory suggests that retrograde menstruation (the backward flow of menstrual debris) plays a part in causing endometriosis. However, it is now understood that 90% of women have retrograde menstruation and only 1 in 10 have endometriosis. More research is required to determine why retrograde menstruation affects women differently.
Meyer’s theory has also shown that endometriosis can be present during fetal development and may simply be activated at puberty when estrogen levels increase in the body and periods begin.
Endometriosis is not contagious and cannot be passed from person to person through contact.
There is likely a genetic component to endometriosis. Girls who have a close female relative are 5 to 7 times more likely to have it themselves, but more research is necessary to fully understand the genetic characteristics of endometriosis.
The immune system and the body’s inflammatory response also contribute to endometriosis, although these mechanisms are poorly understood.
MYTH: A hysterectomy will cure endometriosis
FACT: There is no cure for endometriosis, and most women undergoing a hysterectomy will still experience pain.
How can endometriosis be diagnosed?
Laparoscopy & Pathology Report: The only way to verify endometriosis is to undergo a diagnostic laparoscopy with pathology confirmation of biopsy specimens.
Lab testing does not test for endometriosis: There is no test for endometriosis, meaning patients cannot have their blood, urine, or saliva tested to confirm the disease. Using anti-mullerian hormone (AMH) as a marker for ovarian reserve and fertility, and in turn, a suspicion for endometriosis, is a connection starting to be proposed amongst the scientific community, but more research is certainly needed to see if this could be employed in labs. It is a subject of study as AMH is the primary hormone released during folliculogenesis, which is the making and releasing of follicular cells that go on to be mature eggs in the ovaries. Thus, it is of great interest to reproductive specialists, with a possible connection to endometriosis.
Imaging testing is helpful but not definitive: Despite popular opinion, clear evidence of endometriosis is not visible through computed tomography (CT), magnetic resonance imaging (MRI), or even ultrasounds. While imaging tests, pelvic exams, especially rectovaginal exams, can all indicate suspicion of endometriosis, they cannot confirm it. Nevertheless, it is common practice to obtain a pelvic ultrasound and MRI before undergoing laparoscopic surgery for endometriosis.
The big issue at hand: It takes on average 10 years from symptom onset to receive an accurate diagnosis of endometriosis in the United States. This is due to a lack of knowledge among the general public and medical community. Unfortunately, many endometriosis patients are misdiagnosed, often multiple times, leading to unnecessary and inappropriate treatment. This is why it is so crucial to spread further awareness of the disease and support research and funding.
What are the treatment options?
The gold standard of treatment for endometriosis is minimally invasive laparoscopic excision surgery, keeping in mind a few of the below details.
“Deep-excision”: Deep-excision is performed during laparoscopic excision surgery, where the surgeon carefully excises or removes, the ENTIRE lesion from wherever it is found. This includes the tissue beneath the surface. Endometriosis acts like an iceberg – despite the disease being identified above the surface of the tissue, the majority is implanted into the tissue below the surface. This is why it is so important to find a surgeon who removes lesions in their entirety. For information about identifying a proper excision surgeon and preparing for your visit to the doctor please visit this page.
“Cold-excision”: It is ideal to have surgery with minimal use of heat and electricity. Often times, surgeons will use techniques such as ablation (lasers that destroy the disease) or cauterization (burning off the disease) to “burn off and destroy” endometriosis lesions. However, this increases the chance of not fully removing the endometriosis lesions and risks damaging the surrounding healthy tissue. This does not mean that lasers and high-energy devices cannot be used during surgery, as they can often be helpful for coagulation (stopping bleeding), but they should not be used for removing lesions themselves.
Other forms of surgery: To reiterate, other types of surgery include ablation or cauterization. Both of these only remove the tissue on the surface but neglect the tissue growing beneath the surface. In most cases, ablation/cauterization surgery will not be effective for long-term management of endometriosis because the tissue remains below the surface. Excess scar tissue can also form using these methods due to the high energy and heat applied to surrounding healthy tissue. In many cases, the inflammation following ablation and cauterization can be another source of pain. This is why excision surgery is the gold standard for treatment. If a patient is considering surgery, it is important that they ask their surgeon the method for removal.
Hysterectomy: It is a common myth that having a hysterectomy will cure endometriosis. There is no cure for endometriosis and a hysterectomy is rarely the best treatment. Most endometriosis is located in areas other than the reproductive organs. If you simply remove the uterus and do not excise the remaining lesions, the patient will continue to have pain. Decisions regarding a hysterectomy should be made with a doctor experienced in treating endometriosis and should only be performed if agreed upon by the patient. For more information, see “Endometriosis and Hysterectomy.”
How can symptoms be managed?
Treating the symptoms, not the cause: There are many ways of improving endometriosis relief, but it must be noted that these forms of treatment do not treat the endometriosis itself, but rather serve to alleviate some of the symptoms caused by the condition. These include:
Low-Dose Oral Contraceptives
Hormonal intra-uterine device (UD) (Rather than copper)
Painkillers such as non-steroidal anti-inflammatory drugs (NSAIDs)
Gonadotropin-releasing hormone (GnRH) therapy, such as Lupron
Changes in diet
Not everyone is the same: While all of the above options could be helpful to relieve symptoms, every patient will benefit differently from each treatment. What may work for one woman, may not for another. Endometriosis is a disease that still requires much more research and knowledge.It is crucial for each patient to trust her own judgment, work with her physician, and find the pain management strategy that works best for her if she decides to explore alternative treatment measures.
Seckin Endometriosis Center Endometriosis Resource: drseckin.com
Sampson, J.A., Metastatic or Embolic Endometriosis, due to the Menstrual Dissemination of Endometrial Tissue into the Venous Circulation. Am J Pathol, 1927. 3(2): p. 93-110 43.
D’Hooghe, T.M., et al., Endometriosis and subfertility: is the relationship resolved? Semin Reprod Med, 2003. 21(2): p. 243-54.
Goud, P.T., et al., Dynamics of nitric oxide, altered follicular microenvironment, and oocyte quality in women with endometriosis. Fertil Steril, 2014. 102(1): p. 151-159 e5.
Seckin, T., The Doctor Will See You Now: Recognizing and Treating Endometriosis. 2016.
Even though the prevalence of endometriosis (severe menstrual pains) is well documented in women living in developed countries, studies on the prevalence of the daunting disease among African women are wanting.
There is high misconception that endometriosis hardly affects women of African descent.
Endometriosis, according to medical experts is the abnormal growth of endometrial tissue, similar to that which lines the interior of the uterus but in a location outside of the uterus.
Endometrial tissue is shed each month during menstruation.
The tissue may be attached to the ovaries, fallopian tubes, exterior of the uterus, the bowel or the other internal parts.
According to medicine as hormones change during the menstrual cycle, these tissues break down and may cause painful adhesions or scar tissues.
Ms Akosua Owusu-Efaa, a graduate of the Kwame Nkrumah University of Science and Technology (KNUST) who is an Endometriosis patient said she spends approximately GHâ‚µ 700 on pills and pain killers during her menstruation period every month.
Narrating her ordeal to the Ghana News Agency (GNA), the 30-year-old engineer at the Community Water and Sanitation Agency, said she was diagnosed when she was at the final year at the university.
When asked about her marital status, the visibly perturbed lady said she married when she was 28, but got divorce in 2015.
According to her, she could not always stand the excruciating pains during sexual intercourse, a situation which has dried up her sexual desires.
‘My husband always accuses and rains insult on me whenever I refuse to give in to his sexual pleasures.
‘Sexual intercourse is something I hate in my life because during sex the pains are too much to bear,’ Ms Owusu-Efaa stated.
She pointed out that experience of pains varies between women, with most patients experiencing pains in the area between their hips and at the upper parts of their legs.
Some women may have this all the time while others only have pain during their menstruations, sex or when they have to free their bowels, Ms Owusu-Efaa added.
The most discomforting aspect of it is that most patients of the disease sometimes bleed from their rectum, cough blood and experience regular bowel blockage as well as experience certain discomforts when urinating.
Ms Owusu-Efaa who is the founder of the Endometriosis Awareness and Research Foundation Ghana, a non-governmental organisation, said severe cases of the illness might require open abdominal surgery to remove growths or a hysterectomy (removal of the uterus) and possibly or the parts of the ovaries.
Although the treatment has a high success rate, endometriosis still recurs for about 15 per cent of women who had their uterus and ovaries removed, she added.
She explained that her organisation is working to enlighten people on the condition through health awareness programmes and public education.
According to her, early diagnosis of the disease and effective treatment and the provision of accurate and up-to-date information on the disease is critical if not for total treatment it lessens the burden on patients.
Ms Owusu-Efaa said many young girls especially those in rural areas are suffering from the disease, but expressed regret that lack of funding is a major challenge impeding the work of the foundation.
She appealed to NGOs, philanthropists, religious organisations and well-to-do citizens to assist the foundation, to enable it contribute to global efforts in the conduct of medical research and public education in the country.
Dr Louisa Oteng-Gyimah, a Medical Officer told the GNA that endometriosis is not treatable but could be managed.
He said medical experts are unable to fully explain the reasons behind the close link between endometriosis and infertility.
Dr Oteng-Gyimah said infertility could be a helpful symptom in diagnosing endometriosis in women especially those who have difficulty in getting pregnant.
The private medical practitioner said pains experienced as a result of endometriosis could begin with the first menstrual period, and asked especially adolescent girls to seek medical care if their menstrual pain is strong enough to interfere with their daily activities.
Dr Oteng-Gyimah, who is a medical officer at the SDA Hospital in Sunyani, observed that medicine had not been able to detect why endometrial tissue grows outside of the uterus.
He added however, that several theories borne out of evidences of its recurrences seek to suggest its causes, which include hereditary as some endometrial cells may be present from birth.
A GNA Feature by Dennis Peprah
Sunyani, June 5, GNA – Read original article here
If you live in Ghana and have Endometriosis or think you might here is a link to Endometriosis Ghana Organisation, click here
Endometriosis is a disorder where the tissue that normally lines the inside of the uterus grows on the outside and sometimes inside the wall of the uterus (aka Adenomyosis). It usually involves the ovaries, bowel, pouch of Douglas, bladder, tubes, or the tissue lining your pelvis, though sometimes it can spread beyond the pelvic region. During your menstrual cycle, this displaced tissue thickens, breaks down, and bleeds. Because this tissue has no way to exit the body, it becomes trapped. This can lead to cyst formation, adhesions, and pain.
What Are The Symptoms?
Very painful periods (pelvic pain, cramping, lower back and abdominal pain)
Pain during or after sex
Painful bowel movements or urination
Infertility (though many women can still have children)
Chronic fatigue and chronic pain
Diarrhoea and constipation/IBS
Bloating aka endo belly!
Lower back pain
Nausea and vomiting
Urinary frequency, retention, or urgency
Allergies and other immune-related issues are also commonly reported
What To Do Next If You Think You Have Endometriosis?
1st: Get Informed
My biggest advice for you where ever you are based in the world is to watch the docu-film ‘Endo What’ it literally changed my life. I have watched it now 4 times, every time I cry, take notes, pause to take it all in, and invite my fellow endo sisters round so they can take it all in as well. You will feel educated, empowered, sad, acknowledged, mad and then go through it all over again! Click this link to watch the full film.
It is 3 A.M. my time, I have been up for the past hour vomiting sick because yet again I am forced to get back on birth control to regulate my hormone levels so that I can keep my endo symptoms and pain under control. Right now I’m thinking to myself, “WOW why does my body have to be put through all this”. These past couple of weeks I was off my birth control and I thought just maybe I could get pregnant, that didnt happen… I know I wasn’t fully dedicated to getting pregnant but it’s scary to know in the back of my head that it just may never happen for me. It’s a relief I have somewhere to share my anxiety and worries about my disease, I always feel like no one takes this serious. Thank you for being my safe place.
“For as long as I have had my period, pain has been a constant companion that comes along with it. An inseparable duo that would visit me every month, if not twice a month, for 7 to 9 days. Oh, how joyous I was to have finally become a “women” I thought doubled over in pain. ( I am being sarcastic, I actually hated every minute of my first period and every one since. Who comes up with this crap about it being a great time?)
At tender age of 14, I was blessed to have joined this club at last. The pain I felt during my period was absolutely normal right? At least in health class that’s what they had been jabbering on about. I attended an all girls school, even though I was in pain, I was expected to participate in gym class, athletics carnivals, swimming carnivals and the like, having your period was no excuse “We all get them here, your not an exception” I would have to beg my mum to let me stay home or write me a note for not participating even though she was on the “I think your being over dramatic” boat. I thought that was the worst of it. Boy, was I wrong.
Though out the following years of high school my symptoms began to grow worse. I remember having a few episodes of being in so much pain that I would faint in class and have to be carried to the sick bay by a teacher and my younger sister. Another time, a student and a teacher found me on the bathroom floor during English class. Needless to say, I had a few episodes like this that would result in a phone call to my mother on multiple occasions and on those multiple occasions she would deny that there was anything wrong with me and I was simply being a “hyperchondriac” or “being over dramatic” and insisted I was fine. I wasn’t. She was furious with me one day for getting my step dad to pick me up after one of these episodes. I still to this day don’t understand why she was so upset with me.
I always felt like there was something wrong with me. That It wasn’t normal to experience THAT much pain during your period. Despite what my mum thought, I thought it was best to seek out some answers for my self and made a doctors appointment. My mum told me over the phone on my way to the clinic “there is nothing wrong with you, you are completely healthy, you just have a low pain tolerance” she was right about them not finding anything and at about 15 years old I was told “some women just get bad cramps” by a doctor. Mum was right I begrudgingly thought to myself.
For years the symptoms kept coming and slowly getting worse. At 16 I scheduled another appointment with a different doctor and they listened to me complain about my “pelvis feeling like its on fire” and “vomiting, breaking out in a cold sweat and fainting from the amount of pain I am in” and they scheduled a blood test to check if I was pregnant and an STI check. This kept happening every time I went to a doctors clinic to discuss my uterine pain and other symptoms associated with hormones. Then when I was 18 they decided it was time to give me an ultrasound. FINALLY. I thought. They will find something for sure.
Now, when I went in for this ultrasound I had to drink a litre of water 30mins before hand. I can tell you, If there was a hell, waiting in the waiting room to be seen with a full bladder was close, but when I got into the room and they lubed up my belly and stated pressing down on my bladder to “get a good look” that, that was my hell. It took every ounce of my consecration not to pee myself. When they finally told me I could “relive” myself I was in turn relived. When I came back from the most glorious visit to the toilet I was told that it was time for an “internal” scan. What?!?! The sonographers holding up this wand. I felt the colour drain from my face… how had my doctor neglected to inform me of this quite confronting practice? My relief was shortly lived and I was back to feeling uncomfortable as I lay there watching the sonographer lube up this camera wand. I had to keep reminding myself to relax. I can tell you that I was far from relaxed about the whole ordeal, but we got there in the end and that’s another uncomfortable experience I can say I lived though. Just like a Pap smear only bigger…
The results from that ultrasound were nothing other than two little cysts hanging out on my left ovary. “Shouldn’t be causing you pain, women can have hundreds and feel nothing” ok toots, I get that, but I AM in pain and I’m starting to get tired of the run around I thought to myself what actually came out was “ but I am in pain?…” so they started me on the pill. It was going to lessen my pain apparently. 2 years later though, next ultrasound, hundreds of the little cysty fucks all over both ovaries and that’s how I got the diagnosis of PCOS… But wait, the plot thickens.
Years go by. I leave high school, go on to uni, go onto getting a full time job at the same time. Only, instead of crushing goals, my body feels like it’s crushing itself. I have to take multiple sick days, miss most of my classes, have to play catch up, jeopardise my job all because of this disease I didn’t yet know I had. I remember one particular day being alone at work and just huddling up in a ball on the floor in pain sobbing trying to get it together so I could get on with the day.
This goes on for sometime and no one can figure it out “geez you get sick a lot, must have a poor immune system” I’m at a loss and for 2 years I am utterly depressed. No one understands what I am going though, no one listens, everyone thinks I am lying or faking these illnesses or being over dramatic. I feel so alone. Why am I like this? Why can’t I just feel healthy? What am I doing wrong? Why doesn’t anyone just understand? I was at my lowest of lows. I felt like I was drowning and that things for me would never get better and I was doomed to be stuck and in pain with this grumpy uterus ( I often refer to my uterus as Freddy Kruger, as I honestly think that if my uterus was a person that is who they would be) at 25 sex began to become unbearable, even using a tampoon was causing pain that it never did before. It was getting worse.
It took me 4 appointments with the gyno before I was able to convince them that I needed a laparoscopy to diagnosis what I was expecting to be endometriosis ( I expected I had endo since I was 16. When I first read the symptoms for endometriosis, I cried. That was my life. There was a name for what I was going through)
The day of my laparoscopy rolled around and I was nervous about the whole procedure as I had never had something so invasive done ( excluding the sonographer and the camera wand) but I was determined to find answers.
When awoke in the recovery room I remember just being out of it and asking for more painkillers and laughing ( obviously the laughing gas had me in a good mood) then once I was actually conscious the surgeon told me that I had stage four endometriosis that was everywhere. They were showing me photos of where it it was growing in my body, all over my uterus, ovaries, bowls, pouch of Douglas, bladder, kidneys and get this. My left ovary was stuck to the wall of my stomach and they said it was like cement. They were trying to flush it for what felt like hours. I know I should be horrified by what they are showing me and telling me but I’m just so fucking happy that I’m not the crazy one, that what I was feeling all along was justified and having that answer, finally having that answer for why I felt so shit all the time was there. I had it.
I told my surgeon after an lengthy discussion about my uterus and what have you, that I had been fighting for I diagnosis since I was 14-16 She said in most cases it takes women 8-10 years to get a diagnosis. Wait a minute, back the fuck up… 8-10 years?! So women have to suffer this long before getting any sufficient treatment? How is that even legal? It baffled me. It still does.
So, in a nutshell, that’s my story. It was a lengthy fight, but doctors are slowly becoming more aware and more is being done to create awareness of this wretched invisible disease that effects 1 out of 10 women in Australia. Endo/PCOS sisters if something is wrong, seek answers. If your not happy seek a second opinion. I cannot stress enough how important you and your health are. Fight for your right to have answers and treatment for a better, healthier uterus. All the power to you warriors
““You’re finally a women now,” as I recall my mother saying with the proudest look on her face as she held my hand as we walked to the restaurant to have dinner dinner with the other ladies in our lives to celebrate the day I got my period. As my stomach spun around in circles wanting to let out the spaghetti I’d just ate and my legs shook with pain underneath the table, I smiled wondering if this was really what being a women felt like.
The years went on and the pain only got worse as each month went by, a new symptom every time, a handful of them all or only some, a sort of lucky dip of nausea so severe I couldn’t eat, migraines to the point of vision loss, unable to sleep or being only able to sleep, pain medications, fainting spells just from severity of pain, fetal position on the floor screaming in agony because the heat pack on my stomach was merely just something else to squeeze in hopes of relief. Bleeding or not bleeding, the pain was there. Numerous sick days off from school and work, not being able to go to be with friends because I was sitting in the bottom of the shower watching the blood pour down the drain, replaying the comments in my head from other people about how I am overreacting, I am overemotional, I am overdramatic, that its normal, that it’s the hormones, that its just part of being a women. I endured.
Hospital visits, doctor’s appointments, just to walk out with a new bottle of pills or just a comforting sigh of “this is normal,” “Again Kiara?” Not only just symptoms but sex, masturbation, papsmear tests were painful. This can’t be normal and if it is, why? I felt like I’d been cheated in life, by being a women this is what you must endure, I became spiteful, angry and confused. At some point I contemplated children, maybe a hysterectomy would be an option since no one and nothing is helping rid me of this pain.
As I grew older and became used to this normality, of this gamble of waking up unaware of whether id be able to leave the house that day, whether id be able to leave the bed at least, losing or quitting jobs/courses/school because I was having too many sick days, too many days off. I refused to accept that this was normal and begun the cycle of doctors, specialists, hospital visits and appointments again to try to find someone who may listen to me, who may understand, who may not look me up and down, rolling their eyes.
I remember the day I found out about Endometriosis, I read blogs and articles about the disease and in that moment, I knew that’s what I had, I knew my body and I knew that this was no longer “normal”. To get someone to listen to my self diagnosis was the next part and I had already gone my whole life being dismissed, and now I’ve just self diagnosed myself. Do you really think anyone will listen and take me seriously now? Misdiagnosed and misjudged, I cant remember how many times I got told I had an urine infection, or kidney stones, or bowel issues even when the tests came back negative, or when I had absolutely no symtoms of the suggested diagnosises.
A local female gynaecologist was the first to ever let me speak and actually listen. A routine papsmear and my story was all it took and I was booked in for surgery within a months time. I felt an enormous weight lifted off of my shoulders, even if it wasn’t what I thought it was, maybe they will find something else when exploring inside my tummy, they may well find a cure to my pain.
Dizzy and disorientated after the surgery and yet I was smiling because the endometrioses was found and removed. Smiling not because I had the disease but that I finally knew what my body was telling me all along, I listened and I didn’t give up despite years of being told I was wrong. Most days are still a struggle as I never know what’s going to get thrown at me when I wake in the morning and of course, some days/weeks are worse than others. Having the right answers now helps me to And although knowing full well that endometriosis is incurable and the disease will continue to grow back even when removed, that surgery is now a normaility every few years to me, to this day I am still proud and happy knowing I stood up for myself and my body when I knew in my gut (literally though) that something was wrong.”
““I love being a female and having a female body it’s an extraordinary and powerful thing to inhabit. However there’s some experiences and stories which some don’t share. This is mine.
Periods are a funny thing we all love to hate them … I am I right. However mine have been a rocky road since I could remember, the pain, moods , breakouts and body aches take there toll each month. After suffering with agonising pain each month I decided to see my doctor. I was then put on the pill, which fixed a few of my monthly symptoms. Although the pill made me emotionally unstable and at times a completely different person. The painful cramps still didn’t ease, in fact they became worse. After countless doctors appointments and many agonising days at work I finally decided to say one last thing. To which my doctor said there was no point in investigating my issue. That my pain will subside as I get older or that I potentially have endometriosis, Or have a child. I left this appointment with a script for painkillers and a referral for an gynoclogist ( after I asked for one )
So my journey unlike Bec was a shorter experience yet it doesn’t take away from the fact we both had to fight for our bodies, that we weren’t being listened to.
So, I have two very important things to say about this.
1. As woman we should listen to or bodies. We know what’s “normal” for us as individuals.
2. Our lives are too short to be be dictated by pain.””