Day 4 of Endometriosis Awareness

Day 4 #theendophotochallenge2018 on Instagram
Diagnosis;

After seven years of suffering heavy periods, fainting spells and numerous days off from school I was finally diagnosed at age 18 through surgery, laporscopacally, with #stageivendo.

Even though I have a very strong family history of Endometriosis my G.P kept dismissing even the idea of me having it.

I started showing symptoms at age 11. Don't let this happen to your daughter /sister/significant other/family members.

#endometriosisawareness #endoaware#1in10 #176millionwomen #weneedacure#spoonie #chronicpain #chronicillness#invisibleillness #endopain#endosymptoms #endodiagnosis
#chroniclife #endolife

Hope, strength and an Endoplation

Many of you are trying to conceive, some of you may have already so congratulations. For the rest who wonder if we'll ever experience that particular joy my advice is to keep your chin up. Almost every other day I see women on my support groups announcing their pregnancies and continuing to support and wish the rest of us luck. There is one thing we can all hold onto through our difficult times whether or not your aim is to become pregnant. There still remains;

The bonds we have created because of and in a way despite this illness are incredibly strong. Most of us will never meet face to face but we outline the most intimate details of our lives. Why? Because it's not giving out, complaining or moaning. Simply swapping information with someone who is going through or has gone through what you may be experiencing at that particular point in their life. However, sometimes explaining to people can be a right pain. How do you make others understand?


Whilst browsing through my usual support group pages I came across this photo and thought I'd share it on with you all. It gives a really good explanation of Endo or Endoplation if you will, what we go through and comes very close I think to describing how it feels. Please, take a moment to read it, share with your partner or familial support. Maybe even that friend who doesn't quite "get it". I believe this is a very powerful statement and by educating people we can hope to not only create awareness but perhaps even to help some other women get diagnosed. Who knows?

Ours is a battle. A constant, uphill struggle. Yet many of the women I have met with this illness are among the strongest I know. We can cope with a lot more than we give ourselves credit for and while the emotional pain of infertility can't be overlooked we strive to fight on.

Love to my Endo Sister's as always,

XxxX

It's time to begin

It's official. I have gone one full week without a flare up or extreme pain! (I've had some pulling on the left ovary but it's minute) I'm feeling quite positive about this recent new lease on life. I'm not currently on any treatment either which is a nice break to be honest. I haven't taken any Primolut now for over two weeks and the headaches I was getting have already disappeared. I know I'm prone to migraines but it was everyday with the tablets.

I digress. I want this post to show really how positive I feel both mentally and physically at this very moment in time. There are several contributing factors to my attitude. I've mended friendships, begun new ones, strenghtened bonds and am in a loving relationship. I've also let some people go, woken up to alot of bs and I think, as corny as this is going to sound, grown as a person.

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I've never really been able to find the words to describe how having this illness has affected my mental health. Physically, yes fine, I'll talk no bother at all. But when it comes to opening up about what's going on inside the noggin, well that's a completely different thing already. I've created a safe for my mind. Only I hold the keys and only I decide who gets to see inside.

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Until now. It's been a very long and bumpy road, from first symptom to diagnosis and at times I have literally broken down not knowing if I'll ever feel pain-free, ever conceive, ever have a somewhat "normal" period (not one that lasts over 13days), ever have times where I can forget about my illness and just live. Just be me. Not the girl who has Endo and can't move because she's in such extreme pain or is so tired from blood loss that she has no energy or is going through depression because it's all just too much.

I have lost friends because of my illness. They would reach their limit of asking me to go out for coffee, or a movie, even just a chat and I would be crippled with pain. But, me being me I didn't fully explain what was going on with me because I didn't want them to look at me or treat me like I was sick. In truth, I was afraid if I told them about my Endo that they would walk away. Turns out the joke was on me. Not telling them realised my fear.

Over the years I have found my own coping method as I suppose everyone does given any difficult situation. I have had relationships. Some lasted quite a time, some were very brief. I remember having "the talk" with each boyfriend. When you are dating for a period of time and things get serious, naturally you start sharing your ideas for the future. I always felt it best to explain my illness early on, be up front and get it out there. This, I felt would avoid me getting in too deep. (I have a really terrible fear of being hurt due to past experiences. I'll deal. It's a work in progress). Especially as there's a huge question mark over my fertility. They all reacted well; mainly because they didn't fully comprehend what I was telling them. "Oh you have bad periods? Doesn't every girl?" Eh, not like this.  All of them at some point later on would come to me and want further discussion which of course I was happy to oblige. That's when the talking would get serious. I remember one guy actually looking it up on the internet the evening after I told him and then ringing me with a list of questions asking me about all of my symptoms so he could check them off one by one and suggest treatments for me. He was not a qualified Doctor and became a bit too controlling. It was too full on for me but probably his way of coping. Needless to say that ship sailed a long time ago.

As I got into my twenties and began serious relationships the topic of having children would occur. I would flat out shut this down. I realise now it was out of complete fear, after having gone through fertility treatment last year and trying to conceive for the previous three I know now that I was terrified that if I allowed myself to want something that much, to even think something positive could come out of this situation that my heart would be broken.

thesun.co.uk

Of course I never talked to anyone about how I was feeling or I would have known the rationale of the situation. There are other options and getting stressed is not exactly going to help me out. My life became consumed about getting pregnant. It was, period, intercourse, ovulation tests, pregnancy tests, negative, period, repeat. You get the idea. Then the fertility medication (Clomid) came into play. This, for me was a horrendous experience. Because my ovaries were being over-stimulated I was subject to side effects. The mood swings were uncontrollable. Happy and laughing one minute, crying the next. Physical pain from both ovaries reduced me to bedrest for days, sometimes weeks. It was unbearable.

I came to think; "I can't do this. How can I look after a baby when I'm in this much pain?" I decided to stop trying, to come off the fertility medication and to focus on rebuilding myself. I've realised that for me having a child is not the be all and all of the world but having a quality of life is defintiely a good place to start. I have been fortunate enough to have a good support network and a few really good solid friends who have stuck with me. I am grateful each day for these people in my life because when the bad days come you certainly do find out who's actually willing to be there for you.

I'm feeling much better now than I have in years and the only things really that I've changed are my relationships, my attitude and ok maybe my hair. Do I know how long this reprieve will last? Of course not! But while I'm feeling this good I intend to make the most of it. The next time I have a bad day I'm going to look back on this and remember this very moment where I'm typing in my favourite spot in my apartment, my coffee's gone cold, dishwasher is clanking in the background and my boyfriend's brother Olly is over for a visit. We stayed up last night and shared some white wine and a lot of laughs. The previous night my Bobi stayed over and we watched American Hustle and sniffed each other's nails. Also last week my Bobi and her friend visited Rodney and I in our apartment. I cooked, we had some drinks, listened to music, joked laughed and even had a little sing song. All pain-free.

As always love to my beloved Endo Sisters.

XxxxX

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.

Etsy.com

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

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

Our first annual March for Endo 2014 (photos)

Although the event actually happened on the 13th of March, almost a week ago I am only now able to get the photo's to you. This is partly due to the fact that the photo's were taken on a Friend's camera and partly due to the fact I have been in considerable pain so it kept going out of my head.

Without further ado I give you photographic evidence of our March for Endo event 2014;

Mum and I (Both diagnosed with Endo, Mum had a hysterectomy at 32. I am currently fighting stage IV) Mum could not be anymore supportive of me if she tried. She is my biggest advocate, my counsel and my best friend. To say I love her doesn't even begin to explain it. I have a great respect an admiration for my Mum. She is one of my champions. She knew by my symptoms at an early age, having had Endo herself that something wasn't right and she fought hard until I seen a specialist and underwent tests, surgeries and treatments. Without her help I would have been waiting a lot longer to be diagnosed.

My Sister's (Kelly on the left Vicky on the right) Vicky is my baby Sister, my Bobi. She is the yin to my yang. Kelly is her best friend and has been "adopted" into our family. She is like another Sister. She is incredibly supportive of this cause as is Vicks and I love them both so much. They always make me laugh and smile. Neither, thankfully have been diagnosed with Endo. Due to our strong family history with Endo we do keep a close eye on Vicks and Kells is well aware of the symptoms.

A group photo on March night.

I have always been adamant that men should also get involved in spreading awareness of Endometriosis. A better understanding of this illness needs to happen. I don't know why women want to hide it away. As one of the symptoms can be painful sex you need to be able to speak frankly with your partner about Endo. I'm not saying shout it out on a first date or tell every guy you meet as you introduce yourself but it is part of us whether we like it or not. We need to accept it and then others will be able to accept us as we are.

All of my friends male and female are aware of Endometriosis, what it is, what the symptoms are, and the ins and outs of it. From the guys point of view the majority have the viewpoint that they are glad to know because if they were involved with someone who was displaying any of the symptoms and they weren't aware then perhaps they could encourage them to seek medical help and maybe get diagnosed. This is all hypothetical of course but it's a good point I think.

Well that's enough of that. We will continue to raise funds for the EAI through the sale of our charity t-shirts.

As always, stay strong my Endo Sister's
XxxxX