On the inside

Inspired by many Endo Sisters I have decided to dedicate a post to the colourful world that is Endometriosis.

Be warned,these photos are from surgical procedures so if you're anyway uneasy about looking please feel free to read any of our other posts.

I have included my own surgical photos from my hospital chart to kick start us off.  I have stage IV Endo and as of yet almost 11 years diagnosed I still haven't found a suitable treatment. Surgically, my Doctors are being very conservative as the implants are too close to healthy tissues. Both ovaries adhere to the pelvic wall and bowel and I have had three surgeries to "rotate" them. I am currently looking into alternative medicine, in particular acupuncture and above all maintaining a positive attitude.

There is no cure. It's a life sentence alright but we have to speak up so Women know they shouldn't have to live with this pain. Love to my Endo Sister and Warriors XxxxxX

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.

How do I tell people?

Last night I was on the phone with a person I've only recently to get to know. So when he asked what it is that I'm doing with all of this Campaign-ing I got the usual response upon mentioning Endometriosis. "Endo-what?" I then had to think, what do I say to him? I don t know him that well. So I went with what Endo is and how it affects woman, tennagers and young girls allike. Explained that 1 in 10 Women will get it but many many women are walking around undiagnosed excepting that pain as a "normal" part of their lives.

 It got me thinking though. Explaining Endo to someone for the first time can be a bit of a challenge depending on who they are to you (your best friend, family member, co-worker, new boy/girlfriend or even an acquaintance) I mean in the level of depth you need to get, just how personal should you get. Well I would always say go with your gut and only what you're comfortable divulging about yourself.
Being well informed yourself means you can well-inform others about this "invisible illness".
You can find helpful information here;

http://endometriosis.org/resources/articles/telling-others-about-endometriosis/

They have some really good ways of putting the conversation together. Just have a look.


I think it's handy to stick to the basics first and then go from there, because no two people are the same so no two cases of Endometriosis are going to be the same. That's probably one of the first things I would go with. You don't want to overwhelm people statistics at the start. Reel them in slowly, haha I jest!

1 in 10 Women have Endometriosis and yet it's not spoken about nearly enough. This year we put an end to the silence!

Stay strong my Endo Sisters.

XXXXXX (Coco)

Endometriosis; It's not just about Fertility! Read on my single friends....

Why is it that when people say Endometriosis you automatically think "oh you can't have children" "you'll need IVF" or "you'll find it hard to conceive" etc.

That shouldn't be the first thing at all. Girls, teenagers and in some cases younger need to be made aware of the symptoms of Endo. I know when I attended my sex ed talk in school it wasn't discussed we were simply told about OCP's, Condoms and sexually transmitted diseases. Just the "basics" if you will to prevent us girls (Catholic school it was) from getting pregnant or contracting a disease.

My Sister however, younger by five years, was given a completely different talk at her school. It could have been because of the gap in years and improved information or perhaps something as simple as a different school. She said that her class were told about PCOS (Polycystic Ovarian Syndrome), Endometriosis and Ovarian Cancer. The girls were told what symptoms to look out for and when to go see their G.P

So girls, you do not need to be trying to conceive to be concerned about whether or not you have Endo. 

If you have painful, heavy periods with or without the presence of clots it's a good idea to talk to your G.P

Knowing what is painful enough is a difficult point to advise anyone on as we all have our own threshold for pain. There isn't really a scale with which you can measure up against. Feel free to use the above as a guide,

But keeping a log or journal of your cycle, dates, how heavy/light, how painful, were you constipated or had loose bowels/, any specific areas of intense pain around the pelvic area, is a fantastic tool and will not only help you keep track of your symptoms but it will allow your Doctor to see if there is any emerging pattern. You will basically be giving them a history without answering one question. Honestly if you haven't started one start today. It doesn't need to be long winded. Just the date, specific pain, flow, day of cycle etc. that's it.

One big symptom of Endometriosis that for some unknown reason gets overlooked given that there's such a connection to fertility is that it can be very painful whilst having sex. I know go figure huh. We'll talk about your ability to conceive but we don't want to discuss the actual act being painful for you. 

Painful intercourse (dyspareunia) is usually caused by the stretching and pulling of of endometrial implants and nodules located behind the vagina and lower uterus. The pain has been described' as a sharp, jabbing, stabbing or a deep ache. One women close to me described it as "a hot poker being shoved up inside her". For everyone's sake I'll take her name to the grave but I thought it made for a vivid picture.

This pain may be felt during intercourse but can also last from 24-48 hours afterward.

Some women experience this pain right throughout the month, others only around the time of their period. Just like some only experience the pain during deep penetration whereas others experience it through any form of intercourse.

\The only thing predictable about Endo is it's unpredictability.

No matter what stage of life you're at you're entitled to a satisfying sex life. (Once you're over the age of consent obviously). There are ways to avoid it being uncomfortable or painful and it depends on your own personal situation. It may take some time and a bit of experimenting but it'll be worth it in the end. Each person has separate needs. Find what works for you.

Yeah, I'm not going to lie Endo does cause a lot of problems, it can get in the way. You're trying to plan a vacation and end up fretting you'll have a flare up. But, we have to remain positive in our fight.

Remember girls, practice safe sex. OCP's may prevent pregnancy but they don't protect against STD's, HIV and AIDS. Dont' assume the guy will have protection. Be smart, bring your own.

Stay positive ladies and as always feedback is welcome. Love to my Endo Sisters. XxxX