Michelle from Virginia was diagnosed with Endometriosis when she was 36. Now a year later, she shares her Endo story with us.
Michelle’s Journey: Hi. My name is Michelle. I am sharing this story to help others with endometriosis. I have a very unique story.
In 2003 I came out of the military with a rare bone tumor called fibrous dysplasia. This was and still is in my pelvis. It’s something I went through many years and it took having my third son to put me in a state of barely walking, getting infusions, many rare surgeries at John Hopkins to get the help I needed to walk day-to-day.
In 2012 after having my third son I was having lower back pain and the pain seemed unbearable! Move forward to 2016 after both hip surgeries and pelvis surgeries I was having unbearable pain again and the Hopkins doctors were concerned it became malignant so I had a scan that showed ovarian cyst large enough concerning my pain, and after Christmas I was given an ultrasound and told I had two that seemed like chocolate cysts.
By February and March they did lower scopes since I was having bowel issues too. While that came out fine, I found a doctor that specialized in endometriosis and felt I had it. I knew the pelvis pain wasn’t from fibrous dysplasia and with that condition it made it hard to know exactly how much. I went ahead and scheduled surgery for hysterectomy and removal of cysts. So surgery was supposed to be 4-5 hours and it ended up being 9-10 hours. I had it mid-June. Apparently, I had one of the worst cases they have seen.
All my pre outpatient tests did not show the endometriosis on my intestine, rectum glued to my uterus and a more concerning part deep down in my uterus. I’m 2 weeks post op, stayed in hospital for three days. While I have stitches on my stomach, the inside lower is the concern of healing properly. Post op is up and down. Before surgery I was at gym 3 days a week so I have been walking each day but I still have a lot of pain. I feel like my endometriosis was over a scale I’d 10 always. Right now my lower back pain has since lowered significantly and while this not a cure I feel like this surgery for me really did benefit me. I did end up in hospital not even a week after due too breathing problems. Due too all the gas in stomach and upper. I had no issues passing gas and pooping but that was a goal I was determined to meet because I heard that is terrible. The upper gas was hard, and I had a breathing treatment for 10 days. I’m am 16 postop and sleeping is hard. I wake up with pain but in stomach and that sounds normal. My doctor is shocked if how much walking I’m doing but I feel like I’m slow and to be honest I didn’t start driving until a couple days ago and with three kids I don’t go far right now. Lifting is no joke. You have to have someone for 8 weeks to lift so your bottom doesn’t get messed from everything they did.
We have military, my school, and police department support and it has really helped. I have had many surgeries on pelvis for my dysplasia tumor but this one has been the hardest to experience and endure. Your body gets beat up and there is not physical therapy, only pelvis floor therapy which is something you do later on if you have rectum damage. I will have to go on a medication to help prevent more endometriosis. I only my ovaries left and that is bittersweet but I have also realized how lucky I am that I got three with endometriosis as the doctors are in disbelief and say I was blessed.
I think every case is unique and so a treatment has to be in the best interest for you. I hope this gives some insight on the treatment for it.
Words of Advice for Us: Don’t lose hope. If you have a chronic pain seek medical attention and don’t be afraid of getting a second opinion.
The Last Word: I would say If you have chronic pain and it’s hard and challenging by nighttime don’t rely on pain meds find a solution but seeking a better treatment.
I want to send a special Thank You out to Michelle for being brave enough to share her personal story, struggle, and victories with us today. As you say, “Don’t lose hope.” You’re not alone in this battle. You are a beautiful, brave, and strong woman. Thank you!!!
And if YOU would like to share your story, I would love to share it! The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.