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

A smooth sea never made a skillful sailor.

memegenerator.net

Sleep is overrated right? I did manage to drift off around 3:00 a.m but then woke up just after 4:15 a.m and could not sleep. I had a pillow under my legs as they kept cramping all night. My calves are literally so sore when I'm moving. Even having then elevated my ankles hurt and then the spasms shoot straight up  my calves. Then there's the thigh pain. Literally, a lot of people don't realise the other aches and pains that get triggered when you're having a flare up. My shoulders feel like I have a bag of potatoes strapped to my bag, especially between the shoulder blades. Tender breasts, not to mention a lovely heat rash under them which I'm currently staving off with  Zinc Oxide.

To keep with my promise I made this year below you'll find three photo's of me over the course of this morning. Honestly, I've had a little cry because the pain has just floored me. My back, pelvic area, ovaries, abdomen, just everything is so sore. I'm hoping that this all just means that my body is still regulating itself as I am off treatment at the moment.

Feeling completely overwhelmed 8:00 a.m

Meltdown over. 

Exhausted and fed up 9:15 a.m

Please, I just need a little break 10:43a.m

OK, I had to take a break there. Using my breathing techniques after I had a little outburst. Sometimes, although I try to stay positive in my mind my situation just drowns me so releasing that energy and letting it go rather than bottling it up is the best way I've found to deal when this happens. It's not a regular occurance because I do tend to let things build in my head (which I'm working on) but dealing with it, just recognizing the emotions I feel is a much healthier way of coping.

So I am once again partially horizontal, attempting to study but honestly can't concentrate. Irritated and frustrated but I am reminded time and time again that it's only temporary. Just like a storm this too shall pass.
Meanwhile, I will read, try to nap and hope I feel a bit better later on. Looking forward to seeing my Mum this evening. The weather is looking good enough for a BBQ and of course the World Cup final is on. Mum is up for Germany, Rodney Argentina so that in itself will be entertaining for me.

Summery blue toenails. Cramped and swollen legs elevated now.

My wonderful boyfriend Rodney is starting his holidays today and I'm looking forward to spending some quality time together. I don't care if it rains.

Wishing you all a lovely, restful Sunday. Love to my endo Sisters and thank you for all of your kind words and support.

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.

kent.edu

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.

etsy.com

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.

Twitter.com

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.

Pinterest.com

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.

endo-resolved.com

Stay positive my Sister's. Hope you're all well. Love to you all.

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.