Can it ever be normal?

For the past few days I've been having a "normal" period to give myself a break from the hormones and the Cyklkokapron. In theory it sounded fantastic. Oh my body will have to readjust. Some magical Endo fairies perhaps will have come along and made it all better. I'd like to say I was drunk when I had my profound idea but no, I was in my full senses. What on Earth was I thinking?

I already have pain with the medication I'm on so it seems a little bit Sado-Massicist to want this pain right? That's not what I was going for at all. For so long now I have just been thinking and thinking (in case you're not getting exactly how messed up my head is over this) thinking about ways to allow my body to naturally have a cycle again. You see from all of the treatments I have been on over the years it's knocked me completely out of whack and I am a great believer in "Natural Remedies".

I know, go ahead laugh. Because at times we have no choice but to take these scary GNrH Analogues or have surgery and it's all not very natural. I mean to say given a choice I would lean towards alternative remedies such as herbs, homepathic, TCM and Acupuncture but I do admit that sometimes you have no choice but to go to the hospital as the pain and situation are both too great for you to be waiting to see if a remedy will work.


Thursday and Friday of this week have been my absolute worst. There has been tearing, shredding and back wrenching pain so familiar and yet also new. The boyfriend grows concerned when he sees me in pain like this. Over the years we all become masters at hiding out pain but it does show in the eyes.

I am hyper-anaemic and therefore I get very dark cicrcles under my eyes when Im losing a lot, a sign which doesn't go unnoticed. Then there's the fact that he can just see through me so when he asks I'll give an honest answer.

I've been wondering if there ever will be a pattern I can hold too, some sense of normality or will I just have to keep waiting and wondering when the next haemorrage is going to occur, never knowing if I'm ovulating because 1. My Doctor's can never pinpoint on my blood tests the right time of the month 2. They're not keen to do anymore surgery as they want to preserve my fertility 3. The fertility clinic wont look at me until the Gynae Clinic remove the Endo and get a handle on things there.

I'm in a vicious cycle alright, only there are two puppetmaster's in this show and I think it's time I cut the strings.

Love to my Endo Sister's
XxxxxX

Midweek rant

Feeling somewhat frustrated on Tuesday afternoon trying to make my way through a very busy City Centre in hail, rain and shine (this is Spring in Ireland lads) I felt the familiar twins of a cyst twisting on my ovary, pinching me, building pressure and taking my very breath away. I can be as stubborn as a mule at times so I won't given and sit down when I feel that pain although this could also be due to the fact that I would consider myself to have a lot of inner strength (I'm the year of the Ox, might have something to do with it?). I did however pull my snood up over my nose, take some deep calming breaths and did my best not to publicly break down crying. Would have been mildly embarrassing. This was the first incident the boyfriend has actually witnessed and to give him the credit he's due he didn't freak or overly fuss. It can be incredibly difficult for people to get that balance just right but I think he managed it ok. I got through the initial waves a pain and spasms and it wasn't until later that evening that the cyst finally burst. I am prone to fluid-filled cysts and have been to A&E a few times because of them.
(If you have any signs of symptoms of cysts you should present to your Doctor of Hospital)
I get these quite regularly and some are worse than others but it's amazing how much pain we can actually handle. So, when I stumbled upon this graphic during the week I found it incredibly apt and I just thought it sums up alot of the time how women say to me they feel.

We'd love to say "up yours" to Endo, to our uterus, to our tubes, ovaries, wombs, colons, appendices and any other part that aches and gives us terribly unbearable pain. This should be put on a t-shirt. It's eye-catching enough to get people talking anyway.

On Monday I began taking Cyklokapron. It's something I do not like to rely on or have to use but it's time as I've been suffering with menorrhagia again. That and Primolut have become the only two "solutions" for me. According to my Specialist they need to be as conservative as possible with their approach. They must try to preserve my fertility and apparently there are only so many times they can "rotate" the ovaries.

Everytime I attend the hospital I see a different member of the team with a different viewpoint, a trying to make a name for themselves. When you're eighteen they want to operate and pump you full of drugs and hormones and damn the long term effects but ten years later when your chart is one of the biggest the have, when nothing's worked for you, when even the specialist has said "I dont know what to do with you" you feel like you have become a nuisance to them. You're now that black mark on their record.

Should it be this way? Of course not! But how does one person make that change?
By saying;

Stay strong my Sister's. Love you ladies XxxxX 

Ah insomnia, how are you?

As I mentioned earlier I've been having a bit if a rough day. I didn't really sleep at all last night and today I felt so sore and my muscles felt so heavy that I knew I was over tired aswell.

So I took my nighttime medications around 20:45 thereabouts and nothing. No relief nor hint of the sweet release of sleep
 I feel like a snake curled up, head in the air, ready to strike. My Mum has been absolutely fantastic today. She never makes me feel guilty when my Endo flares up and I can't do basic chores. She actually told me to "stop saying sorry". Do as you're told I guess.

Anyway, I digress. Here are some photos of my"Endo face ",  taken about two hours ago".

Stay strong my Sisters. Love you all. XxxxX

Mini Rant (not enough energy for a full one)

It's 20:00 here in Dublin, Ireland and to be quite honest I have been about as useful today as a butter knife to a T-bone. Since last night I've been in a considerable amount of pain which over the day has been exhausting every inch of me. At this very moment my back aches, my pelvis obviously, my thighs, shoulders evenot down to my ankles are sore. I feel like someone came in a kicked me around for a while without my knowledge. Or lije I'm being slowly squeezed out by thorns or wire of some sore. It's sharp, pointy evil shooting pain. This picture actually helps a little to describe it.

I know this may read like a massive whine and plead for sympathy but do not mistake me. When you feel like you have a dozen knives slicing through you and ten hands tearing you apart all while you try not to vomit, keep taking in fluids and cling onto your last bit of sanity so you don't pass out, the last thing you're looking for is someone staring at you with an "oh you poor thing" face. Girl power and all but ease.up a little lads.

I pledged to keep writing especially on the bad days when the pain is freshly in my mind so I'm afraid you're all getting it both barrels. There have been comments on my FB page of the same name as tjis blog saying some very supportive and sweet thisng's. One word that keeps cropping up however is "brave". It's not brave to show my face through this process. I think rather you, the reader, are the brave one, you don't know what you're about to witness or read. It's my goal to spread awareness about Endometriosis so we need to stop hiding and end the silence.

I am utterly shattered so I am going to bid you farewell for now and I'll update soon.

Hello Endo my old friend

I made it through Paddy's Day without an incident. My lower back was achy and as usual the ovaries were fighting over who loved me the best, although showing it through pain is not ideal for me.

Cut to 22:00 thereabouts, my Endo starts attacking, a flare up I'll call it for now. In keeping with my no holes barred approach this year here's how I'm looking right now. (Pic's below)

Not a comforting site I know. But I will get through it. I have an amazing family around me and some very understanding friends.
Let's hope this flare up doesn't out stay it's welcome. Other than that life is good.

Love to my sisters and their families.

Stay strong
XxxxX

Talking to Endo

You've been a part of me for so long that sometimes I can forget you're there. But then you remind me by doing your usual trick. Hurting me the way you do, on this daily basis I am trapped. I am your prisoner. Your hold over me is strong and for you to go is not an option.

We've tried different treatments over the years to help us have an amicable separation but you just won't let go.

You've scarred me for life, you tire me out and you don't apologise to anyone. I have to make the excuses for you all of the time.

Through the agony, blood, sweat and tears I have cursed your name many a time. The stronger you are the weaker I feel.

I knew our paths would cross from an early age. You have tortured my family for years. First, my Mother then my Aunt and now me.
There are 176 million of my Sisters you have tortured along your way and you will continue to do do.

But, what you didn't count on, what you're not prepared for is us fighting back against you.

Yes, my dear dear Endometriosis you may be part of me but you do not define me and I am going to fight you all of the way. Of course some days you may be more powerful than I but I will conserve my energy and remain positive. I will speak out against you. I will encourage any Woman who has your symptoms to be checked by a G.P please and I will pledge here and now that I will never stop fighting you or supporting those in the medical and non medical communities who are constantly researching and testing treatments out and are also trying to develop an early detection test for the future.

This battle is far from over my friend. You see I am what we call an Endo Warrior, backed by my family, friends and Endo Sister's and you well let's just say your number's almost up.

You can't isolate me anymore. I've a strong network of support and love shown to me each and everyday. Even when you are pulling my body apart and stabbing my back. When you cause me so much pain I faint, or I can't eat or sleep I just think to myself words my very wise Mum comforts me with "It won't always be this way".

Sometimes you hurt me more that others but I will bear it. I will get through. Because you don't get to control me anymore. I'm taking back a piece for me. I'm trying to find my strength again with you.

But in the meantime, I will tell as many people as I can about you. Educating people about what you are and do is my goal as always. The more the public are aware, the more this taboo about Endometriosis will be lifted.

You are my demon I must fight. Constantly having little jibes at me. But I will not fight you alone. #Endometriosis #Endo

Love to my Endo Sister's XxxxX

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.