Sometimes it can feel like we have lost a large portion of our lives to endo. To many, the largest portion seems to be the time before being diagnosed. It is like being stuck in a nasty state of limbo. There is an ever present pain and yet, whenever you go to a doctor or a gyni, there is no answer. There is no resolve. It feels like we can’t move forward because we don’t know what is wrong with us. It is frustrating and it can make one feel incredibly isolated. Doctors make out like we are just making things up, that “period pain” is normal and inevitably we simply get told we have a bad case of irritable bowel syndrome.
For some women this waiting time can be as long as twenty years! This is scary stuff and during those twenty years, the only solution seems to simply be to diminish the pain… which means taking painkillers on a continuous basis. This is how we westerners typically deal with our pain, don’t we? We need a label, something distinctive to tell us what we have. It is only then, after having a word, a made up “condition” or “disease” that we feel we can move forward.
I know many women who have years of anger and resentment about this period, this “delay” period of not being diagnosed soon enough. It is as though not having a label has created anger for not knowing what they have.
Personally, I feel that anger is more about how we are treated, rather than the lack of diagnosis.
When we go and see doctors with pain and we simply get told that we are making it up, that our pain is “normal” or that we are exaggerating, it makes us feel ignored, like we are idiots or that we are silly. Unfortunately, sympathy is not something we get. So, we become angry for being treated like “nothing”. We may start to cry or get angry right at the doctor, to really try and stress how bad our pain is, how much we are suffering. This often simply makes it worse, as then we might be prescribed anti-depressants or are told we have “emotional issues”. Instead of getting respect for enduring huge levels of pain and understanding for our struggles, most doctors will often simply recommend synthetic hormones or painkillers to try and resolve our issues.
I used to be angry at my doctors and gynis who recommended things that made my body worse. I was angry that such misinformation exists and that so many women out there are suffering unnecessarily, taking nasty synthetic drugs each and every day. It saddens me more now. I had to let the anger go. It was not helping or healing my body.
I think the anger was more about me. About that deeper inner sense of me that longs to gain respect and be noticed and taken seriously. It was about wanting to be recognized and appreciated and not just being dismissed as yet another woman with “painful periods”. I wanted some real answers and I wanted someone to actually acknowledge that needing to take painkillers all day long was simply not normal! I think it came back to that feeling, you know the one… where you feel wrong for being demanding, where you feel lost and alone and like you are needing some direction from someone, a professional, and yet you don’t get it. It is a deep sense of loss in not being heard. Quite simply, like you are yelling out for help and no one is helping you, no one is reaching back to help you, no matter how much you seem to scream in pain or yell for some recognition of it all. You are alone in this massive big pool of ice, desperately reaching out for someone to pull you out and yet, there is no one there, there is no solid stick to pull you out! So, you are left in that nasty pool, screaming in pain and wondering why.
It is actually quite easy to get angry about this. I know. I was angry about this for years. I was angry that my doctor didn’t know what was wrong with me. I was angry even when I got a diagnosis. Angry that I was simply told to take this hormone treatment or the contraceptive pill or that a hysterectomy was my last resort and that those were my only options. I was never told about natural healing or natural options for my endo. I had to find out everything on my own. I had to fight back and demand more, before I got any real answers!
I had to be strong, before I could really get strong! ( both mentally and physically)
We need to love ourselves enough to demand more. We need to insist on what we want and make our own decisions for our body! We need to learn which doctors we can trust, which doctors give us enough respect and which actually really appreciate what kind of pain we are in.
Being that strong is incredibly challenging when we are in daily pain. It is exhausting having to judge whether a doctor is really helping us. It is hard to trust any inner voices because we are so clouded by a dark cloud that looms over us, each and every day… it is the cloud of excruciating pain!
In my experience, my emotions of anger were deeply connected with my endometriosis pain levels. When I got angry, it would flare up. It didn’t matter what I got angry about, it would flare up. I learnt that anger was simply not my friend and that at some stage, I would have to let it go. I would have to accept that change takes time. I would have to make a point of focusing on things that made me happy, that were positive as those emotions made me feel good, made my endo pain go away.
I know there are many things to get angry about when it comes to endometriosis. The length of diagnosis, the poor solutions and the endless bout of false information or misinformed doctors.
However, with all of us uniting through the internet and support groups we are making changes. We are slowly altering the ways things go, for other women. It does take time to make changes happen in the world but we are all part of that change. We are all sufferers of this condition and simply by that fact, we are part of a statistic that will gain attention, by those numbers alone. Endometriosis is becoming much better known and there is heaps more information out there than there was when I first got it!
By us all uniting and sharing our experiences, through the various treatments we have tried and succeeded or failed in, we are helping more women. Those women, will be able to share those experiences with their daughters and friends and we essentially can gain an amazing thing…I like to call it the Endometriosis Women’s Revolution! It is a little bit of the “girl power thing” mixed in with the good spirits of sharing about endo!
The more women that fight and stand up and say “no” to Lupron, the more women that say, “I know that period pain is not normal”, the more women that say, “I am not having a hysterectomy as it doesn’t definitely cure endometriosis!”, the more our voices will be heard.
So, girl, be strong, we are in this together and know that there are better options for you… you just gotta keep researching and healing. You are important. Your voice deserves to be heard and trust me… you are incredibly strong!
This Post Has 9 Comments
I strongly believe that just focusing on hormones is a short term view on healing endo. The core of it is still out of balance. Get him to focus on your liver and you will see much better results. It is a long process but never give up sweets! Here for you 🙂
I can relate!!I think I spent alot of years angry. Then I took it into my own hands and did research. It was all trial and error. I did have the surgeries and did have a hysterectomy. I still have pain but not as bad since I don’t have a period. I think you start to get past the anger and then something or someone digs it back up in you.
I know now I am going down that path. I changed doctors to a natural approach. He does not think it is endo. He thinks it is hormones. He is trying to balance them. It was not going well and it is now evident to him that I can not tolerate them. Now we need to try another approach. I have been taking the supplements for inflammation and so far it has not made a difference yet.
My headaches are worse. SO.. yes it is fustrating. But healing is a long process. I have to be honest I have started taking some meds again to just get through the bad days.
Thanks for your message.
Thank you Mechelle! Thanks for the encouragement and support and for always being active on facebook 🙂 It is great to get comments and feedback!
Well said! So, so many of us can relate. Thanks for sharing your heart with us and for giving us a place to unite and share our stories, natural remedies and ask questions. You’re the best!
Great post. Reminded me of myself with the anger and blame.
Also, even though you can have severe endo without a lot of pain, most docs don’t listen until you’re writhing in pain. I had stage III and not that much pain. I had 4 docs tell me I didn’t have endo, without listening to any other symptoms at all.
I’ve heard of Bicarbanate of Soda before for this pain !
Great post! Yep, I’ve been annoyed that I was misdiagnosed for so many years. But, I also believe that timing is everything. We eventually adopted twins…..maybe if I was diagnosed earlier, that wouldn’t have happened?? Who knows. It is what it is, right?!
I actually finally wrote out my endometriosis journey on my blog. Felt freeing!