For some reason today I'm feeling like sharing a retrospective pictorial regarding my ENDOMETRIOSIS...it very well could mean nothing, but I'm hoping that my seeing it as a past part of my life means it will soon truly be a PAST part of my life rather than it is at the present.
This is one of my first Katie, the bloat, pictures EVER from a few years ago.
I took this picture the day of my hysterectomy, the evening of the day I had it done and I'm holding a stuffed doggie that came with one of the flower arrangements I received.
I love this next pic, it is the day after my surgery. I just love the sense of relief, deep relief, that is all over my face. I still feel an overwhelming sense of freedom when looking at this picture.
During a healing session with my astonishingly amazing teacher, while being so incredibly bloated, we both came up with the most perfect name for the journey on which I currently find myself. I also love the layout and composition of this picture. It marks the beginning, to me, of this deep process of BRAVE HEALING.
The next two photos are of my incredibly largely, and painfully, swollen belly. There are not words yet to describe how much pain this bloating caused. Not only physically either, emotionally and mentally it was painful and exhausting because people question, judge and assume that I'm pregnant. That is incredibly difficult to deal with when I've already had a hysterectomy making that no longer feasible.
These next three photos are from my last endo-related hospital visit, also the only hospital visit during which I've been admitted. It was exhausting, painful, frustrating, scary, worrisome, vulnerable feeling. I was blessed to be in a beautiful hospital with a great private room with a very nice view and a tv with quite an assortment of movies available to watch.
I had been toying around with the thought of piercing my nose for a few years now. I began thinking more seriously about it and wanted to research and find out whether there was any significant meanings to which nostril was pierced...come to find out that the left nostril is associated with the female reproductive system and health....ummmm, really?! Literally once I learned that I made an appt at a piercing shop. It was one of the best decisions I've made in my life. It has helped me so much, it was another magical ingredient to this perfect concoction that has melded together to land me
in this place of betterness.
All of a sudden after a meeting with another teacher of mine, my Katie had shrunk down in size at a great rate and by a large amount. The difference was a relief - physically and emotionally, not to mention very exciting!! The last two pictures are from that time.
Well, that's it tonight for pictures, but now I'd like to share with you a very important piece of writing that intelligently explains what this disease is, the author bravely shares her story and then she states why we MUST research until there is a cure. The author is a very brave, wise and beautiful endometriosis survivor, advocate and eloquent spokeswoman.
(This chunk of writing isn't short, but I find it important for me to share and hope you take a few minutes to read it. I guarantee most of you will learn something and maybe it will open your eyes just a little more)
The author is Nancy Peterson.
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 scoldingsabout 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.
******
Well tonight's blog ended up being an interesting combination and quite long at that, so thank you readers for putting in the time tonight to read. Blogging is such an awesome platform for information to be transmitted not only freely but easily. I have found great joy and a sense of both release and purpose in the blogging I've been doing.
I BLOG FOR ENDO AWARENESS!!
~namasté and good night all...and get all those so. cal peeps, aren't y'all grateful for the rain tonight!!
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