Last week was a very difficult week for me. I had been suffering from Endo pain, PMS, and cramping since April 30th. My period started on May 2nd and lasted until May 8th. Of those 10 days, eight of them were incredibly difficult. I want to say “unbearable,” but…with proper pain medication, heating pads, comfy clothes – it was bearable. I may not have been functioning very well, but I didn’t die. I’m still here. And the pain has ended…for this round.
Thank you to everyone who shared words of encouragement and support, especially after my Feel Good Friday’s post…which I don’t even remember writing. Ha!
But I wanted to share a series of emails with you today that I received during that time. I found it uplifting during the hardest days, and it helped me (and will continue to help me) hold onto hope. Christina has given me permission to share these emails in case it also grants you, or someone you know, much-needed encouragement and hope. I look forward to meeting her.
May 3, 2018, 10:07 p.m.:
I hope you are doing well.
I had the pleasure of reading a page in your facebook page about your journey with endo and your creation of a support group. I was involved in one many years ago myself, and admire the leadership it takes to start one from scratch yourself.
I am a 50 something year old survivor of Stage IV endo who also lives in San Diego.
I endured 3 surgeries battling this disease, 1 of which was 11 hours, was in hospital for 16 days with that one, and I lost a large part of my colon, among other bits.
I remember all too well the isolation at work and missing so many special events with family. The “excuses” that I made to excuse myself from many social situations due to pain and food intolerances that some people rolled their eyes at because of their ignorance of me not dealing with “period pains”…. I remember the intense physical pain, the fear of not being able to be “surgically or medically repaired”, the depression and despair from hopelessness and helplessness, the pain with sex, painful bowel movements, the flood like bleeding and shooting pains down my thighs constantly, the food allergies and IBS, the shame of not being able to bear children or function like my coworkers, I could go on, but I think you and all those with this disease can relate.
I am so glad to see you reaching out to learn from and help other woman struggling with endometriosis and all its cascading issues to connect with one another and support each other.
It is huge to be able to talk to someone who understands your journey.
Mine was a very rough 12 year ride, BUT I am fully well now with NO pain, and have a good life with my hubby of almost 30 years.
I am a certified Zumba instructor, a creative being, and enjoy meeting people and sharing my message of restoration.
I am happy to share my message of hope to all woman and young girls, dealing with this disease who feel worthless and hopeless.
My message to you is don’t give up! There is hope! I am evidence of it.
May 4, 2018, 12:25pm:
Thank you for such an incredible email! I love it when local’s reach out 😀
I am SO happy to hear you are no pain-free and living a wonderful life with the Hubs! May I share your email on my blog and on our private Facebook group? I really needed to hear it today, as I’ve been going through an incredibly painful last seven days. ❤
Thank you, Christina.
PS – Where do you Zumba? I’ve put on a few extra pounds due to my inactivity and would love to shed ’em in a fun way with someone who knows what we go through. ❤
May 4, 2018, 3:34pm:
I was teaching Zumba in a dance studio I rented in Del Mar, but I live in Scripps Ranch now so I am speaking with a dance studio up the road from me about renting from them twice a week.
Zumba is fun and doesn’t feel like a chore. I am not a gym rat and I don’t like treadmills (my add mind goes mental with one direction for 30 mins!)
Please do feel free to share our communication/conversation on your site. I am glad my email encouraged you and I hope it does for others as well.
My first surgery was 5 hours, next was 11 hours with a bowel resection, 3rd was around 2 hours for hyst. Each time my organs were glued to each other like a ball of wool (adhesions)…
I am sorry you have been having pain, and I do hope this pain phase passes soon. Red Raspberry leaf tea used to help me, and DRY (soy free) Vitamin E Avoid Vit E oils which often are soy based – used to help me a lot. I took 400iu a day (Vitamin shop sold the only Dry form of Vit E when I took it ). Hot water bottle wrapped in a pillow case cover so doesn’t burn your skin helps to relieve the muscle pain.
Stay away from soy. It is the enemy of those with endometriosis. I always avoid soy in any form – flour, tofu, fillers, oils. This article includes many of what I figured out I should take years ago that helped me
I remember that was so hungry for hope when I was at my lowest low. I had many lows, but one very memorable one…
One really desperate time in my bedroom, I was rolled up in the center of the bed in a fetal position, and through heavy sobs I actually prayed and said to God that if He wasn’t going to heal me, to just let me die…
I mean that’s pretty scary mentally that I got to that point. But many girls do. Some young girls even commit suicide in despair, especially after hysterectomies when they are unmarried, and know they will be unable to provide children to a future spouse.
Some healthy marriages even break apart because of the constant drama that endometriosis brings to the party. Those guys forgot the “in sickness and in health” of their vows!
It’s truly heartbreaking! And even thinking about how I felt, knowing these are common thoughts others feel, still brings tears to my eyes.
Anyway, my breakthrough came very soon after that desperate prayer! I was transformed into the new me! Hopeful, rearing to go again.
I had that third and last surgery with Dr Redwine in Portland, Oregon in 2010, and he MIRACULOUSLY found NO ENDOMETRIOSIS!
A BIG mystery since it was noted that they had to leave a substantial amount of endo lesions on my already resected bowel, on my previous post op report (by a Dr he personally knows very well in Atlanta – Dr Albee another expert)…
Only fibroids were found outside my uterus, which I’d instructed him prior to going under anaesthesia to just remove my uterus, since I had decided I was done with trying to have kids unsuccessfully.
I was shocked at hearing this excellent news – I was ecstatic! A miracle? Also lifestyle of avoiding ALL soy, eating organic and only grassfed meats among learning A LOT about health issues and foods etc.
I am VERY grateful for Part 2 of my life! Even 8 years later.
My personality is a go getter. I am a hyper Italian woman! J And this disease KNOCKED me to my knees!
The good thing it taught me was a deep and real authentic Compassion to those who suffer in ANY capacity.
My heart aches when I see ANY suffering.
This Endo experience journey – as rough as it was, brought that type of kindness to my heart and soul in an experiential way that cultivated love in me, that I would likely have never developed without this journey.
In life most of what we learn comes from EXPERIENCING things – good and bad. We don’t ENCODE information as well just “reading” about it, as much when we actually LIVE it or DO it…So to FEEL and Experience pain makes the issue or lesson, very relatable and tangible.
This pain stretched me way beyond my comfort levels in many ways. As an independent “Type A”, go getter, who didn’t like to ask for help, or admit weakness – it forced me down a path of needing help – of being vulnerable to my hubby and family….and MANY more people I didn’t want to be “weak” around – like a few non compassionate, catty colleagues.
My hope having gone through the transformative Endo fire is that it will benefit all those I interact with my life in some way, by not just exercising empathy, but heartfelt compassion, that’s come from a place of a shared pain experience.
Please do share this and the previous email. Women need to know healing is possible. I am restored and rearing to live again! I stand a high, on the mountain with my arms raised up in victory – where I hope you too will be someday soon too!
Maybe we can meet for tea or coffee sometime soon if you would like, or zumba.
Much love and healing to you.