We tell our friends we can’t come and visit them as we feel sore and in pain. They sometimes think it is an excuse not to see them and that we don’t really enjoy their company. We tell our partners that we don’t feel well enough to have sex that it causes pain and they assume we no longer want them or find them attractive. We go to the doctor and explain that we have severe pain and they put it down to being overemotional and sensitive and just bad period pain or IBS. Fabulous! Where to from here? What now?
I have had this feeling of complete isolation with Endo. It is a scary place because no-one seems to really get it. They don’t get what the pain feels like, they don’t get the up and down emotions and they just don’t get that their “not getting it” makes it so much worse. We feel silly, perhaps that we are just imagining or creating the pain. Perhaps we are just weak and don’t really know pain? No, that can’t be it, cos this REALLY hurts……
Endo affects us on so many levels that are often hard to define to people. We can’t express to people that we simply feel sore and don’t want to do anything. That we want to crawl up into a little ball and go to sleep for hours and not face the world or any of its cruel judgement. We feel damaged, broken and somehow completely alone. So alone…..
The hardest one is actually the whole relationship side. We have extreme emotions. This makes us “high maintenance” towards our partner. They don’t always understand why one minute we are laughing and having fun and the next we are crawled up on the floor crying like the world is going to come to an end. Then, we have the added thing of soreness during sex. This makes it really tricky. We know that intimacy is important to keep our relationship on balance and happy. Our soreness during sex puts us in a predicament. Either we simply have sex and put up with the pain…. or we tell our partner that we are sore and disappoint them by not having sex at all….. Or we tell them we are sore, that we can try and have sex but then we feel they are constantly worried about hurting us and not really enjoying it. Boy, how complicated is that?
It affects us at work. The problem is, Endo is not visible and it shows no signs to anyone that we even have it. The pain is inside us and it is debilitating and yet no-one can see it or appreciate its severity. We explain to people that we have Endometriosis and we get given blank looks of: what? It is especially hard when we talk to men about it – which is not only embarrassing but they don’t seem to get it anyway! We get tired easily, we get overwhelmed easily which makes us emotional and then we can get snappy with people. The boss then turns around and says: What is wrong with you? Maybe you need to just take some time off! Great, now he thinks I am just an emotional wreck!
The worst thing about Endo is actually diving into the emotional abyss. Let me explain. So, we have Endo and it has all these horrible effects and possible results on our lives. This makes us unhappy, so we get angry; the anger leads to higher emotions. We feel isolated, we feel misunderstood and this makes us even more upset and emotional. It just spirals down and down from here. Then the pain gets worse cos we are now angry and emotional and we clench our abdominal muscles and then we feel like there is no end and we hate everything about our lives and we hate Endo and we get more emotional and angry and then….. oh boy…… the spiral just keeps going down and down and down. It is hard to get back up and take a breath!
So, my advice from a fellow Endo sufferer:
Take the pressure off yourself
The problem is we want to be the best that we can be – all the time. We want to be the best partners, the best at our jobs, the best friends and so forth and so on. This is an awful lot of pressure to put on ourselves. We need to just accept that 2nd best is also okay. We are only human and that what we can do is the most we can do, even if it is not always 100%. Do you really think your partner will love you more for being all upset that you cannot please him sexually or do you think he would be happy with you just being easy going and happy and explaining that maybe some other game would be okay? The more emotional you get around him, the less he will get it – sorry ladies but men don’t cope with emotional stuff well :). Learn to just let some things go a little. Our constant desire to be perfect and do more, be more makes us unwell. Give yourself time to get there and you will in the end.
Believe you can
Endo can be overcome and you can get better. Believing this is half the battle. When we go down our emotional spiral, it is because of those nasty thought that tell us we aren’t going to get there, that our lives have changed and we will never have what we want because we have Endo. THIS IS NOT TRUE! You can have everything you want in life, it might take a little longer but you can do something every day to get there. Just take little steps on a steady basis, rather than huge steps (creating more stress) for a shorter time frame. Endo can be overcome with the right mindset and making sure you have balance in your life – real balance between work, play, diet, exercise and most importantly fun and enjoyment of life! Take time to enjoy the little moment along the journey!
Find some “Me time”.
No-one around you seems to get it and there are all these pressures from everyone. Just get away from all of them! Tell them you need some time off, some time away and take it. Go for a walk or meditate in a big park. Escape for you. There are heaps of ways to get some “me time”. You can take up something creative, read a book in a park, take a long bath or even just take a train to somewhere you have never been and explore the countryside. You deserve it and need it! Now take it! A great one is a health weekend away – just fabulous!
Don’t be a victim
Many of us have only just begun our journey with Endo and this is the hardest part, as the future described by doctors is often very grim. Endo can control your life, IF YOU LET IT but you can make the choice. Accept your limitations but NEVER give up on your dreams because of it. This will just make you angrier and ….. the emotional spiral all over again! We all have the power to heal ourselves and to make our lives complete with Endo and all going well WITHOUT Endo. Understanding the condition and thereby beating it, is the first step – luckily I am researching all of this and you can find the information on this blog….
I would love to hear your story and what your personal experiences have been with Endo…..:)