In the last month, I have been conducting interviews with my past practitioners to gain insight for the book I am writing. And as I compare and contrast my experiences, I began to notice how different practices made me feel as a patient and as a person. Some of my reaction has to do with the training practitioners receive in there different fields and how they are taught to approach disease and sickness. Some of my reaction has to do with what each practitioner believes as a person and how they generally interact with other human beings.
I found myself reacting very severely to the label of Endometriosis. And I felt labeled most often by those working in the realm of conventional medicine.
Western medicine utilizes a reductive diagnosis process. Meaning, they will reduce problems down to one specific diagnosis. Which makes perfect sense to get to the bottom of the issue, to think “When I figure out what is wrong with me, we can start fixing it.” Except, for me, it feels like being shoved in a cage and locking the door.
You are Endometriosis. You have pelvic, abdominal, and lower back pain. You have imbalanced hormones. You will battle depression. You will have trouble getting pregnant. This what I was told at 14.
Yes, endometriosis cells were found. But the label of endometriosis and all the other labels felt like being handed a death sentence. At 14, I believed what I was told; you will have a life of pain, hormonal issues, depression, and by the way, good luck having children.
Dealing with conventional medical practitioners I felt like they would read my chart and run the endometriosis script. Laporoscopy, Lupron, pain pills. That will buy you a few years, and we will do it all over again. In the meantime, here are some hormones and mood stabilizers to keep you sane.
With holistic practitioners, I felt they considered the endometriosis as only a part of my diagnosis and treatment, but really listened to me. I didn’t feel like a label. I felt like a person who would really like the pain to go away. A person who would love it if I weren’t in bed for 2 weeks out of the month. A person who wasn’t irritable and cranky. Who wasn’t yearning for a nap the moment I woke up.
A person who has a voice and feelings and just wants to feel understood.
I now have a team of people who treat the whole me.
I can’t encourage you enough to surround yourself with a team that truly listens to you. Do not settle for practitioners that only treat the disease. You are a person and deserve to be treated like the unique human being that you are.
I am proud to say, that after 17 years of living the label of Endometriosis, I found a team of alternative medical practitioners whom I love, and who helped me get my life back. I am no longer in pain, my hormones are balanced, and depression is a distant memory. I am living a life AFTER endometriosis. I continue to share my thoughts and path to wellness because I want there to be positive information available.
I just came across your blog and love it 🙂 I’ve conquered much of my pain through natural methods as well and agree that endometriosis needs to be addressed as a whole body healing — both physically and emotionally. Good to see positivity associated with this disease.
Much love to you.
Aubree, great to know there is another out there utilizing holistic healing methods! Xoxo
I came across a post on my facebook page and clicked on it which took me directly to your page and this article. I am a 27 year old African American women and was hit with the indescribable, unknown pain of endometriosis while I was in 8th grade sitting in class. Of course at the time I had no idea what was wrong with me and was terrified, my body temp rose, I started to sweat and couldn’t walk and was very embarrassed. The schools nurse had to come and get me with a wheel chair because I couldn’t walk and my mom and friend had to come and get me and carry me into the emergency room. Of course that wasn’t the day I was diagnosed, those er doctors could care less, they threw me some ibuprophin and sent me on my way and it wasn’t until I was in high school and the pain happening every month at the beginning of my period that my mom said enough is enough, I believe you have something called endometriosis and took me to the doctor, and once again the doctor didn’t really seem to care wrote me a proscription for birth control said it should help get rid of or minimize the pain and that was it. over the years ive done my own research and finding help from a doctor that really cares just seems hopeless. I really don’t want to have surgery, but I really want to have a child one day, but to know that may never be possible, just the thought has me crying many days, I cant even pass motherhood maternity or a pregnant women without getting teary eyed. The pain from endo is so severe for me and I just want to die because I hurt so bad. But im glad to know that there are other women out there with the same problem because I have no one around me that understands my pain and heart ache. Your article has made me feel a little bit better today and has encouraged me to not give up hope in finding alternative help with my endometriosis. I live in Woodbridge, Virginia, do you know of any alternative medical practitioners in the area. Thank you so much, for speaking out and giving me a little hope. 🙂
I had a friend that gave me your website……………..And I am happy she did!!! I am 24 years old and was recently diagnosed with endometriosis. I have a very high pain tolerance and I let it go way too long. I have enjoyed reading your posts because you get it! I have a very supportive family and friends including my boyfriend. I have had the mind set, ” I can handle the pain, I can handle being uncomfortable, I can handle the medication…..so hopefully I can have kids.” But to tell you the truth the pain effects everything!!! I can’t ride horses (which is a huge part of my life) I can’t run, sometimes I can’t even sit at my desk at work. I have tried birth control and steroids…………….Hasn’t done much. I have heard three times now that I need to have a hysterectomy…..but I’m not ready to give up. You have given me hope!!! I am praying for the day I can climb back on a horse and rope steers without pain, I praying for the day I can run down the gravel road, and I Pray every day that the good Lord will eventually bless me with a family. Thank you for being an inspiration!!!
Thank you for sharing! You have been through so much, keep fighting and searching for the answer that is right for you.
I was diagnosed with endometriosis in 1986 by an MD that didn’t even know what classic endo looked like. Luckily he sent some samples to the pathologist where it was confirmed. I was seeing the chief of OBGYN at the hospital I was employed at and thought I was in good hands. The cautery that he performed on the entire surface of both ovaries set me up for surgery every 1.5 years for the next 15 years since I am an adhesion former. One year I had 3 surgeries and was awake under general anesthesia for one of them. I saw 5 MD’s before my hormonal imbalance was diagnosed properly – DR number 4 the late Arnold Kresch,M.D. Took an interest in my case and once I was beyond his expertise he referred me to an excellent REI MD that cared for me from 1991 to July of this year when he decided to go back into teaching MD’s. This was a man of great knowledge and research as well as compassion. He never gave up on me even when I suffered for 8 years with chronic pain requiring injectable meds and care by a pain management specialist. It was on his watch that I had the awareness under anesthesia and he understood the effects of that holding my hand through a very dark and difficult time. I never stopped reading and searching for answers. Over time I established a good medical support team which I know was a big part of my healing. It was trial and error finding the right people but by utilizing many modalities eastern and western my symptoms were managed and my last surgery for endo was in 1998 and in terms of the endo and chronic pain I have remained 95% pain free ever since. I am now 52 and starting to head into menopause but not 100% there yet so still take low dose provera daily.
What I would like to say is that there is hope for healing … Anyone on this journey should seek out support groups and should establish a relationship with a good medical team. You will need someone in your corner cheering you on when you feel like you just can’t face another day. For those providers that don’t care or listen to your concerns ….. Move on keep researching who the best MD’s are for your medical problem and don’t give up until you find someone who you can work with and includes you in decisions. As I was recently interviewing new MD candidates I realized that I allowed Endo and the anesthesia awareness to control my life …. I missed out on relationships and having a family and now it’s too late. Heed my words don’t let this happen to you. Endo and the awareness will always be a part of my life but I can choose the quality of my life now and not let it control me. It’s time to live!
Keep spreading the word! There is life after endo,