Living in Pain Isn’t Living…

By Ady_Hopeful

2 min read

Pandemic, divorce, anxiety, npd survivor, depression, and last but definitely not least endo. I was entering my mid-thirties and all of a sudden I felt hypochondriac. My mind and body were hijacked. I no longer felt myself.

Where it all began

I began my endo story at the age of 11, my periods were heavy, painful, I dreaded going to school in fear I would stain myself. I thought to myself this is part of it and just did my best throughout the years with pain meds, teas, heating pads, you name it. After getting pregnant, I started with sciatic pain, then with my c-section things just took a turn for the worse.

My symptoms hit like an avalanche

I had constant low back pain, pelvic and hip pain, leg and foot numbing, recurring UTI, painful bowels/IBS, heavy bleeding, painful intercourse, fatigue etc. Now I am 35yrs old, and I found I need to purchase a walker to take my 11yr old daughter to Disneyland. I looked online for the best-looking one due to fear of being judged. I found the trendiest looking one and decided to hit the buy button. I knew that not purchasing it meant I would end up limping after our trip. I had to remind myself that it was worth it to not feel the pain after.

What I am experiencing is real and valid

Now my life is constant planning and even purchasing depend underwear for heavy bleeding. After seeing so many doctors primary, obgyn, gastro, nephrologist, spine/nerve, acupuncturist, etc., I find myself constantly advocating for my health seeking answers. Reminding myself that I’m not crazy. My symptoms/feelings and impact from endo on my life are valid.

Chronic pain has become a way of life

I have so many more stories like the Disney one but the truth is that I have become desensitized to the pain. I had to get morphine at the ER to see what it is to feel no pain. Chronic pain just becomes a way of life, and as you are told just drink Tylenol you begin questioning yourself, am I exaggerating is this even real? I had to seek a support group and I am new to this forum because I know its real and all of you out there are living this with me. Living in pain isn’t living, but pain reminds us we are alive and I am hopeful that things will get better. It's not easy advocating for oneself, but it's the only way. Stay strong y’all!!!

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Kimberli Davino Member
<inline-mention username="Ady_Hopeful" user-id="4827144"/> - firstly, just wanted to welcome you to this community. We are so glad you are here and so happy you chose to share your story here with us all. This community is the best of the best. I hate knowing we are all suffering, but knowing we are in this together, sure is helpful. Honestly, reading your story, almost felt like I was reading my own. I could relate to all of those things as a kid and now at 34, still can relate. It took years before I could truly believe that what I was dealing with was real and valid. Doctors tend to like to make us think we are crazy and making stuff up. Many have told me to just go to therapy, that therapy was all I needed to feel better. It is angering the treatment we receive and how many truly are not well educated on endometriosis. Being our own advocate is the most important thing in the world! And I am proud of you for knowing that and doing that for YOU! I know you have been through so many doctors, have you seen an endometriosis specialist yet? How have you been feeling lately? What helps you manage your symptoms the best? Sorry, so many questions I know. Haha! -- By the way, I loved your last line, "Living in pain isn’t living, but pain reminds us we are alive and I am hopeful that things will get better." SO very true and such a great way to look at it. So glad you have found this community and are here Ady! Know, we are always here for you. So please reach out anytime you need to vent, cry, complain, chat, whatever it is. We are here <3 Sending you the biggest of hugs! -Kimberli (team member)
Ady_Hopeful Member
Thank you so much for the support. Currently I am seeing an obgyn and well also acupuncturist. Is there a difference between obgyn and endometriosis specialist? I’ve been low energy and fatigued. I had to give up coffee due to the recurring UTIs and well been following some of the recommendations on here. What helps me manage my symptoms gee that’s a good question, I’ve had to readjust my lifestyle to what makes me feel better, and taking note of what doesn’t make me feel good, for example the coffee. I do go to therapy as well to work on the chronic toll it takes on me. I think the hardest part has been when I have limited mobility due to my nerve pain and I have to be cautious those days to not withdraw socially or get down. Yesterday I couldn’t even sit on the floor to play barbies with my daughter due to my leg pain and so I had to talk to her about accommodations mom needs-play on the couch-and its hard seeing her sad face, but she understood and in the end she was like oh its ok mom. I guess being vocal with my family, friends and employer has also helped me. Sometimes its hard because it almost feels like in my head I heard them saying-“What now?” you know? Thank you for being so welcoming. 😀
1. Ady_Hopeful Member
 <inline-mention username="Keri Wiginton" user-id="2054949"/> Good to know I will definitely look into that site. Thanks for sharing!
2. Kimberli Davino Member
 <inline-mention username="Ady_Hopeful" user-id="4827144"/> Can't say it enough, proud of you for making those decisions and deciding what you felt was right for you to focus on right now. I have chosen no meds too right now, and just really working on my diet. But like I said above, I think I am going to look into therapy. And I am intrigued by acupuncture as well. Keep up the good fight warrior. And keep us posted on how you are doing too. <3 -Kimberli (team member)
Kiwiplumeria Member
 Thank you for sharing your story! I am cheering you on, and can relate to many of the things you share, including nerve issues and IBS. As a mom of two little ones, I, too have had to modify certain activities, and noticed that if I do what is best for me, it works out well. The kids adjust and take on the energy that I bring to it; if I accept myself and say to myself, hey, it's ok and good to take it easy today, they (I know I am lucky in this!) go with the flow. My endo is stage IV and I will have major surgery this September. One of my goals is to cheer on other women who are going through endo. So even though we haven't met, I am your cheerleader and so proud of you. I too have been wondering about what makes someone an endo specialist; OB/GYN's have different levels of experience, mine is affiliated with a well-known hospital where they are planning to create an Endometriosis Center soon. I want excision/ laparoscopy for my surgery so they can send the results to the lab for pathology. Sending you much love and blessings on your journey ahead. You are not alone. 
1. Ady_Hopeful Member
 <inline-mention username="Kiwiplumeria" user-id="6124578"/> Oh wow it just comes to show how much one has to advocate for ourselves I mean I can only imagine everything you went through prior to surgery, during surgery and post surgery. I’m glad that you are seeing great results from it. I think that for me it has been a struggle to work on my eating/exercise and not see any results due to the inflammation. It can get a bit discouraging at times. I had to put a pause on pushing for endo surgery due to my other surgery and using up my PTO, but hopefully in the near future I can be evaluated as well. Wish you the best!
2. Kiwiplumeria Member
 Yes, you are right, we become our own advocates. I can relate to the eating and exercise bit. I was working out so much regularly, eating healthy, and still looked pregnant. I feel and look much better now. It's encouraging that there are good doctors out there who know how to do excision, which reduces the inflammation. I hope you can get evaluated, too, to get some clarity. Wishing you good answers and options up ahead, and a great support system for your healing journey.
Ady_Hopeful Member
I hope everything goes well with your surgery. I recently stopped my birth control portia pills and have been feeling so much better without them. We’ll see how sustainable it is. Thanks so much, I appreciate you and cheer you on as well.
1. Kimberli Davino Member
 <inline-mention username="Ady_Hopeful" user-id="4827144"/> was scrolling through stories and came across yours. Just wanted to check in on you and see how you have been doing. Have you still been finding relief without your BC!? I hope so! Sending you big hugs <3 -Kimberli (advocate)
Ady_Hopeful Member
<inline-mention username="Kimberli Davino" user-id="2055071"/> So far I don’t have any more breakthrough bleeding and I can manage it a bit better. However, I still have bloating, occasional back pain and a about 2 days of heavy bleeding. After my gallbladder removal I have been trying the mediterranean diet as well to help with inflammation and other symptoms. That part has been harder, but trying! Thank you for checking in on me! 🫶🏼

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