Paid Menstrual Leave

A few days ago my attention was drawn to an article in an Irish newspaper about "Paid Menstrual leave".
Apparently this situation already exists in many Asian countries and the topic was putting it to Women to gain their response as to whether they would approve of such sick leave being brought into the workplace. The writer of the article seemed to take the idea of this extra leave as an offensive situation, that it would be singling women out, giving their bosses an excuse to let them go or perhaps not hire them at all because they're too fragile to work.

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I have to say this irled me some. I feel that women such as ourselves could benefit from having these extra paid sick days because we suffer from a conditioin which we can't help that does cause us to call in sick more often than other co-workers. It's not a case a special consideration but I think one of understanding. A lot of women I have spoken to over the years have lost their jobs because they had to ring in sick so often due to the pain they were in. I'm not suggesting for a moment that this paid leave would put an end to all of that but I do think it would be a good place to start. Creating awareness and raising a level of understanding is a first step in our battle against the ignorance of this disease.

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You don't need to shout it from the rooftop's and I'm sure you could find a discreet way of dealing with it in the workplace between yourself and your boss. Obviously the details would need to be refined. But the general idea does appeal to me. It would allow Women who suffer with Dysmennorhea, Endometriosis, PCOS or other pelvic issues a bit more leeway when it came to their periods. Some women experience such pain that they need to be hospitalized. Others I've talked to are on such strong pain med's that they wouldn't be able to drive their car to get to work or operate machinery or sometimes even walk with the pain. I think is a step in the right direction.

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I do find however that other Women are often the ones who look down at Women who suffer with their periods. It's like they can't possibly comprehend that you could be in that much pain. We should stick together not try to tear each other apart. Everyone suffers in their own way and everyone has their own story.

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Stay positive my Sister's. Hope you're all well. Love to you all.

XxxxxX

Real Men Wear Yellow

Happy Friday everybody!

So I've been having a lot of different debates and discussions about Endo with people of all walks of life, all ages and surprisingly both sexes. The amount of  men I've have spoken to in the past two weeks all of whom are currently single that have taken an interest in this illness has really given me hope for the future of Endo. I know, I know I sound preachy but one guy in particular said "if my Girlfriend/Wife was going through this I'd want to know the signs and symptoms even if she didn't so I could help her get diagnosed". I continued our conversation and explained what March 01st was representing. He had no at all getting involved. So I thought I would dedicate this post to my very nice, caring Irish friend and the below pic is quite appropriate.

It got me thinking that while we may be afraid to broach the subject when entering a relationship due to the complicated nature of this illness if more people as a whole were aware there would be a greater understanding and much less taboo.

I'm sure parents who have had Endo do make their daughters aware of the illness. Well my Mum did anyway right from the start and believe you me she watched me like a hawk with regards to any signs I was showing that something was not the average shall we say.

I know in the future, if I ever do take that plunge and have a biological child (there is a very strong genetic link of Endo in my family, my Grandmother, my Mother and five Aunts)  I would make them aware girl or boy of this illness. Too many young girls suffer with horrendous amounts of pain needlessly, all because they think it's a "normal" part of being a woman. They feel embarrassed about seeing their Doctor about their periods as they are afraid they will be told it's something they just have to deal with or that they're making something out of nothing. If I had a son I would certainly want him made aware so he could be knowledgeable and pass that wisdom on.

We need to create a link, throughout families, friends and our extended circles that will continue on for generations. This year is our year to #EndtheSilence so let's do it!

A powerful statement by great advocate for Endo, Nancy Peterson 2014

I was invited to say a few words at the March in DC, but health precludes my travel. So am sharing a few thoughts here 

When I was diagnosed in `1969, I had pain and one hospitalization after another for 17 years, without a diagnosis. I did however experience multiple scoldings about pelvic exams not hurting as I tried to exit the exam table with the ratcheted speculum still in place and some psychological dismissal because its just her period.

Today, 44 years later, instead of prompt diagnosis and prompt treatment, we see diagnostic delays averaging 9 years. Nine years of pain, psychological dismissal, and disregard of severe pelvic pain. We have not come very far at all.
Making things worse, some are advocating that we not treat “minimal” disease at all. After all, it’s minimal, right? Well any endometriosis lesion can cause significant inflammation of the lining of the pelvis (aka peritoneum). Try living with a couple grains of sand in your eye for a lifetime? It is the same kind of inflammatory response. This kind of misogynist approach to endometriosis care is outrageous. It is steeped in “there is not enough money to treat all 180,000,000 women worldwide” for their endometriosis. Let me tell you, if 180, million men worldwide had unbearable pain during sex, bowel movements and exercise, and were offer as treatment, femininzing hormones, surgical castration or pregnancy? It would be an international emergency to which we would transfer our combined defense budgets. We would not be having this misogynist conversation regarding enough money. 

The peritoneum is the thin saran wrap-like lining of the pelvic cavity and the organs. Its role is primarily protective. If there is blunt abdominal trauma, infection, appendicitis, leaking organs it reacts swiftly and predictably. There is bloating, intense abdominal pain, nausea, paleness, restlessness, anxiety, (oh, you recognize that, do you) and every medical and nursing student on the planet has been taught to recognize these symptoms and respond quickly. A differential diagnosis must be made promptly and the peritonea quality pain treated with pain medication. In women with endometriosis we can somehow dismiss the intensity of her pain with the assessment, “oh, it’s just her period”. This is outrageous that we would ignore either in an ER or in a private practice, peritoneal quality pain without treating it. 
If the caregivers do not have the skill or interest in excising endometriosis, at least treat the pain. It is as intense as appendicitis. I know I have had both. Or better yet refer the patient to someone who can remove disease effectively. On our endometriosis boards on Facebook and other organizations, (where thousands of desperate women with endometriosis gather) we have identified less than 100 gynecological surgeons out of 52,000 in the USA who treat disease effectively, and yet most believe they can. Treating effectively is permanent relief of pain in one or two surgeries. This disconnect is a huge problem. Drugs do not treat endometriosis, they alter the normal hormonal state the woman tries to live in. Once, when giving a lecture on modern concepts in endometriosis, I had two surgeons confront me during the intermission. They said surgery was not necessary, they were curing their patients with triple dose danazol and then they stormed from the room.
When the lecture resumed the crowd interrupted and wanted know what the surgeons said. I told them they were “curing” endometriosis with danazol. I wondered aloud why they would think that. The nearly 100 women in the room shouted almost in unison, “Because we don’t go back”. So if caregivers are thinking they are helping their patients with medical therapy, perhaps they are not listening close enough, or their patients are not coming back.
In the 1980’s when I was managing the Endometriosis Treatment Program at St Charles Medical Center in Bend Oregon, we saw patients from around the world. They were all multiple treatment failures both surgical and medical. Seventy-five percent of them had been dismissed as neurotic. All had active, painful endometriosis as determined by independent board certified pathologists. Today, still I hear from woman after woman who has been told she has no disease and to seek psychological help. Yet when we manage to get her into the hands of a doctor doing advanced excision, she has active endometriosis and experiences dramatic long lasting relief. 

Women with endometriosis live lives of quiet desperation. They have learned to be quiet because most do not believe the quality and severity of their pain. Their support systems often abandon them because doctors could find nothing wrong. Yet they present with peritoneal signs and symptoms. Will we continue to turn a blind eye? Or can we have the necessary compassion for their plight? If we cannot surgically resolve their disease, could we consider referring them to someone who can? Or can we put them into a pain management program? They will not become addicted, they may become dependent, but at least they will be able to get up off the couch and put the heating pad away and resume living a life. Endometriosis is not a terminal disease, but despair can be and has been among women with endometriosis. I know of many, one is simply too many. 

What I believe we need are trained surgeons to surgically deal with lower stage disease everywhere, and referral centers for complex, deeply infiltrating disease. Hysterectomies do not cure endo, there are thousands of us that were fooled into believing that. It is unacceptable to continue to expect these women to cope with peritoneal quality disease without help and without relief. We are either part of the problem, or part of the solution. We cannot continue to ignore their plight. There is a significant body of data now showing that excision of endometriosis lesions restores lives. How long will we continue to ignore that?
One of my heroes is Sister Kenny, an Australian Nurse who developed physical therapy for the acute effects of polio. Her therapy and hot woolen packs prevented joint fusion and relieved pain. She was soundly trounced worldwide by orthopedic experts caring for polio patients for years. Gradually, there was recognition that she was right. When asked why she thought it took so long for others to see that suffering could be ended with simple changes in care, she responded: “When we speak with the voice of authority, we come to believe we are the authority”. When I read that, I thought, yes, despite evidence to the contrary. Well, there is evidence, plenty of it that skilled excision restores lives.

Lastly, another hero of mine is Margaret Mead a cultural anthropologist from the last century. She said: “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.” Be that small group, (180 million worldwide) that changes the world for women with endometriosis. Work with gynecologists everywhere to raise awareness of just how much this disease impacts lives and how inadequate many approaches are. Give them back their lives, their sexuality, their education track, their fertility, their love of life, get them up off the couch, and turn off the heating pads with truly effective surgical management of endometriosis. It is time to stop ignoring the destructive impact this disease has on women’s lives, the lives of their families, spouses, significant others. Actually, it’s way past time.