Even the orchid has an Endo face...

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During the night the pain began. Slowly at first, just a small ache. Nothing to moan about. Gradually, the pain increases. I can feel it right down to my ankles which are now swollen. I elevate my legs for a time before attempting to go about my day. I think I manage pretty well, getting study done, some household chores and I even manage to gett my wall art up before I start feeling that overwhelming tiredness. The fatigue appears as if from nowhere, yet I know it's been building. My legs are sore and my ovaries are beginning to pull. It's time to get my water, pillows and a nice cup of tea. I settle in, as comfortable as I can get and manage to write up an assignment.

ladycarehealth.com (I'll let you know if this works for me)

As I am writing this post I am somewhat horizontal, packed up with pillows and cushions to keep my legs elevated (courtesy of Rodney). Dinner has just been made, which I can't even eat because I'm so bloated and uncomfortable there just isn't any appetite there. A movie "Afterlife" (fairly decent) is about to go on before we watch Brazil -v- Holland (I've a soft spot for the Dutch) play for third place in the World Cup, which of course they win.I have taken painkillers of course but we're all used to our usual merrigoround with Endo. Keeping myself calm and trying to remain relaxed is the key for me here so the pain doesn't take hold.

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Hoping to have a BBQ tomorrow, with my Mum coming over to watch the final game of the World Cup with us (Germany -v- Argentina, Ozil -v- Messi,) I've promised Rodney I'll cheer for Argentina although if Ozil does score I will be quite pleased. Let's hope it's a fair and intersting game.

Being completely restless I decided to watch "Cracks" after falling in love with Eva Green as you do when you watch Penny Dreadful.

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I must say she's only continued to get better with each role I've seen her in.Yes, I know I'm not really discussing Endo here but one can only attempt to describe pain so much until it becomes upsetting. I found the following on twitter and just had to share it with you lovely ladies.

(twitter.com)

I will wrap this ramble up with a goodnight to you all as the clock approaches 1:00 a.m. Beyond tired now I will head to bed, sit the pillow under my legs and read my latest JD. Robb until sleep comes. 

Till tomorrow, football and hopefully a less painful day.

XxxX

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

Best explanation I've come across

One of my Endo Sisters shared this picture of Dr. Cook's "Stop Endometriosis and pelvic pain: what every Woman and her Doctor need to know."

I've not come across a better way to sum up Endo and that's just the first page.
Love it.

Check up - left Ovarian Cyst

After many weeks of trying to deny that everything's been ok with regard to my left ovary I finally gave in and went to see my Doctor on Monday. I've been having severe pelvic pain, radiating from my left ovary outwards. My lower back has been especially achy, my left shoulder is like a brick and the pressure I've been feeling in my pelvic area has been at times quite intense.

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I am really lucky to have such a good rapport with my Doctor. He is very understanding and thorough, doesn't take any BS and I would like to think is very upfront with me. I explained my symptoms and after some routine tests and a pelvic exam he concluded that I most likely have a large cyst on my left ovary. While I had suspected that this was the case I felt very relieved to have the diagnosis. He prescribed me painkillers and antibiotics three times a day for a week.

I'm under strict orders not to do any heavy lifting, over exerting or gymnastics

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 (there goes my big plans for the week :-) ) If the cyst doesn't calm down with the treatment then he wants me to go to hospital. I've has many cysts burst in the past and I am prone to fluid-filled ones so I'm not very eager to go running to A&E. Fingers crossed though everything works out well. I've had some pain today alright but so far I don't feel like anything is about to pop.

While I was with my Doc I also broached the subject of "coming off" my Primolut N as my migraines are increasing again. In his opinion, he thinks I should stay on it for the moment as the weigh up between the haemorrhaging I experience and the migraines are not really a balanced choice.

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I know he has a point and it's true I've been good in getting off the rest of the hormone treatments I was on so of course it's best to suffer the migraines instead of the prolonged bleeding, anaemia and crazy hell that would occur should I cease the progesterone treatment.

I just thought I'd chance my arm, see if I was "doing better". It's been frustrating me really badly of late how much this chronic condition affects my day to day life. Some days just finding the willpower to get out of bed is a monumental task. When my pain is what I would call "bad" I can't concentrate on anything, I'm extremly irritable and really you do approach at your own risk.

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I know I talk a lot about staying positive and I'll stick to that as I frmly believe it can and does help in the long run to cope with this illness, or most really I suppose. I never said you couldn't have a bad day, week or feel irritated at times.

It's all about getting up each day and carrying on, doing our best, making good choices and being kind to ourselves.

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Love to my Endo Sisters.

Andie  

XxxX

Happy Mama's Day

A lot of my transatlantic friends are celebrating today and rightly so.

For those of you who are feeling a little down today or are wondering if it'll ever happen to you. Keep the faith I say. Whichever faith is completely up to you, staying focused on your goals and remaining positive is the main enemy.

Wherever you are and however you're feeling today tale a moment to be thankful for your Mum, Gran, Aunt or other strong female presence in your life.

Enjoy your day ladies.
Until next time
XxxxX

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

Alternative remedies for chronic pain (1)

Like me I'm sure you've been through the wars with this illness and when it comes to talking about pain relief I'm usually the first one to roll my eyes because not a lot has worked for me. It dawned on me one day that my G.P had put me on medication that's also used for Cancer pain and that kind of freaked me out. I have always had a keen interest in the alternatives to convential medicine. I have tried accupuncture for my Endo with successful results, I must actually make a new appointment. My therapist actually told me that there was a "mass" over my right ovary and after what happened on Tuesday I'm inclined to believe her even more now.

I have also tried herbal and homeopathic remedies. Personally, Chaste Tree (Vitex agnus-castus)

(seeknatural.co.uk)

 and Yarrow (Achillea millefolium),

(Etsy.com)

taken in tincture form can sometimes ease my bleeding and the symptoms of PMS but this does depend on the cycle and what medications I'm taking the effects vary. For my pain I have found that Belladonna works great for me. Its a dangerous herb so do not try to cultivate this yourself. Buy from a reputable health store please.
Herbs like Ginger are great for nausea and Nettle tea is an old remedy my Mum used to give me for cramps. It eased the pain I must say and I was really skeptical at first. Again in depends on your pain levels. We're all different. Nowaday's I wish a cup of Nettle tea would do the trick. But I'll stay positive and kick this Endo in the butt. I don't want to get stuck in the negative pain cycle. It looks a little like this and I'm sure we can all relate to it at some point or another;

You are best to talk to your healthcare professional before beginning any course of herbal or homepathic treatment. 

I've heard many people tell me now aboue TENS machines. I have as of yet to try one out. I think I'll do some research into it and decide then. For now here's a little bit about the TENS machines;

How tens pain relief works

At high and low frequencies, tens machines activate opioid receptors in the central nervous system. Opioid receptors have various functions, including the production of analgesia (pain relief), sedation and euphoria. When a tens machine is turned up to a high pulse rate, it causes neurotransmitters (chemicals) in the spinal cord to send messages to the synapse in the brain. This causes the spinal cord to block the pain gate, by producing pain relief (analgesia). At a low frequency, tens pain relief machines also stimulate serotonin receptors in the spinal cord. This causes serotonin to be released in the brain. Serotonin helps to relieve chronic pain.

How effective are Tens Machines

Various research has shown that using a tens machine is an effective way of easing pain, if it is used correctly. The results vary according to the type of pain. A study done abroad surveyed the effects of tens pain relief for labour pains. 71% of participants said tens machines had provided effective pain relief for their labour pains. Most of the participants said they would use a tens unit for pain relief in the future. For more TENS machine info, go here  http://www.tensmachines.ie/

Scared yes, foolish perhaps, stubborn most definitely.

Hi all, forgive my absence I've been having a rough time with my Endo of late. So bad that on Tuesday morning I actually gave myself a fright. For a few days previous I had an intense pain in my right side. Not a familiar pain, like a sharp stabbing pain just under my last rib. Too high I thought for it to be connected with my Endo and I had planned to see my G.P Tuesday evening if the pain did not ease. 

{I know many people would say to go straight away to the hospital if you have a sudden intense pain but when you are experiencing pain daily and you are accustomed to a certain amount of unexplained intense pain I think you can become a little bit complacent about things. Well I can only speak for myself but I think this is the reason I don't run to A&E each and every time I've a new pain as I'd be in there every week and that's not the life I choose to live. My apologies if this offends anyone, it's not my intention.}

So with that in mind I was minding my own, doing some chores when all of a sudden this tearing pain just floored me. I mean literally. I fell to the floor with the pain. It shot right through my body, spasmed around my back and even into my legs. I was clutching my abdomen having no idea what was happening to me. It felt at if someone was twisting my ovary and pinching it until finally I felt what I can only describe as a "pop" or a sudden "burst".  The pain lasted several minutes with such an intensity I had to focus on my breathing, using techniques I have learned over the past few years. Of course it would be a day I was at home alone. I couldn't even get to my phone from where I was. I just had to ride the pain out. Those minutes felt like flaming hours. It was intense to say the least and one of the worst pains I've experienced in sometime. 

Ten times worse than this picture could depict. I would have taken the barbed wire I swear. 

When I was finally able to move I noticed there was a lot of blood, clots and tissue has passed. It was a scare to say the least. I must point out that I did not proceed to the Emergency Room. I rang my hospital and spoke to someone from the Gynae Team. I have in my possession Cyklokapron and Primolut and was advised to take these to stop the bleeding as that's really all they would do for in hospital. When I described my symtpoms it was loosely agreed that it was an ovarian cyst that had ruptured. The person I spoke to obviously will not be named and they couldn't assure me that staying at home was my best option. They encouraged me to come in for a scan but having been through this process several times before I felt fairly confidant that the pain would pass with the clots. 

Today I am much better. Even yesterday the pain was completely gone from my right side.

I found out from my pharmacist that the painkillers prescribed my my G.P are no longer on the market as there were not enough people on them. I have decided to return to a homepathic remedy I know well. Touch wood, all is going well today. I managed to get some sleep last night which I really needed and between my boyfriend looking after me, then going to visit my Mum and Sis. I have so much support and I am eternally grateful for them. 

Family Support

I have mentioned before in my posts how important I feel it is to have support from your family while going through the mind blowing, body ripping, emotionally draining fight that can be Endometriosis.
Now I say "family" but this dynamic can come in all shapes and forms. You don't need to be blood related to be family.

Family to me are the people who love you unconditionally but will put you up on your bull without qualms. They are the ones who will comfort you and laugh wildly with you at inappropriate things. They never judge you, but accept you for who you are and you likewise them.

For me, my family are the ones who I can be 100% open with. I'm not afraid of who I am with them. My illness is not a seen as a weakness but when I have bad days there us no guilt there. I guess it's acceptance of who I am, entirely. My quirky sense of humour, shyness, choice language and intense passion for Rugby are all parts that join up to make me the person I am and to not have to answer for that is to feel safe and wanted.

It makes going through this battle with my body more bearable. When I feel as if the pain will never end and like pieces of me are literally being torn apart. When I'm burning up or passing out or my legs refuse to hold me anymore because all of me energy is focused on getting past this, getting through and for me avoiding the hospital because I am sick and tired of the "routine", knowing I have the love and understanding of my family, my supporters, the people I would trust with my life really does make all the difference for me.

Even if you only have one person that you feel this way about. It's one person who completely understands you and accepts you for you and that is priceless.