Hi! My name is Rhonda and I am 26 years old. I guess I'll start from the beginning...
I was rather young when I first started my periods - 11. I remember it very well. It was awful. I was out sledding with friends and the pain was miserable. I was in bed for over a week. My periods have always been terrible and I'd have to stay in bed for at least a week, missing days off school at a time. My mother always told me it ran in the family and everyone else dealt with it and made it through - I was no different.
I was miserable. I became pregnant when I was 14 with twin boys but I had a lot of complications. I was put on bed rest when I was 4 months. I had a weak cervix, pre-term labour since 4 months with home monitoring and daily medications to stop the labour. Then, at around 7 months, I got HELLP syndrome (which has to do with hypertension and liver/kidney functions - basically my liver and kidneys had had enough of the pregnancy and couldn't handle the stress it was putting on my body any more and began to shut down). I was rushed in for an emergency cesarean section at 33 weeks. Everything worked and my kids are healthy and happy, almost 12 years later.
Once I had my kids, my periods became worse and worse. At one time, probably 4 years after my pregnancy, I went to a free clinic and was put on birth control. That lasted maybe a year. They kept switching the pills depending on what they had and it was just killing me to have to keep switching. I went on with my life, one a month. I would be in bed with terrible cramps for about a week and my periods lasted 9-11 days. I would start heavy and have to use a pad and a tampon and switch about every hour for the first 3-4 days, then it would get lighter for about 2 days, then stop for a day, then start heavy again. I was nauseous and my cramps were mainly located in my lower back and sometimes my abdomen. I dealt with this just because I knew nothing different. My mom always said all the women on her side had terrible periods. She would give me Naproxen when it was really bad but that didn't seem to help. The only thing that helped was sleep because when you're asleep you can't feel the pain. But, the problem was getting to sleep despite the pain.
Okay, now we're fast forwarding to when the real problems started. Last year, in January, I was out with a friend to dinner. Everything was normal. I had a couple drinks and ate some food, came home and went to bed. Now, I was due to start my period any day. I went to sleep around midnight but at 3:30am I woke up with a terrible stomach cramp. I thought maybe I had to go to the restroom so I got up but it didn't work so I went back and lay down. By this time the pain had increased to this sharp, crazy, stabbing pain, all in my lower abdominal area - I couldn't pin point where exactly it was. I was drenched in sweat and felt like I was going to pass out. Instead I started vomiting. I woke my husband up because I was beyond scared. I had no clue what was happening. I thought maybe I ate something bad at the bar and he went on his way to work at 5:00am. I was still throwing up and at this point couldn't even get out of bed. My friend, who slept over, heard me crying and came in my room. I remember telling her I thought I had the flu or something and not to come too close. She stayed and got the kids on the bus for school for me but then had to go home, so I was home by myself. That whole day, I was scared out of my mind that I was going to die. I couldn't keep anything down and couldn't stop vomiting and the pain was unbelievable. I have never felt this intense pain in my life. My husband came home from work and saw how pale and sick I was. I tried to sleep on and off through out the day. He kept telling me I needed to go to the emergency room by I didn't want to. Finally, at about 9:30pm, he gave me the ultimatum that either I get in the car and go or he was calling an ambulance, so I went. We had to call my mom to stay with the kids. I couldn't get up to get to the car and ended up doing somewhat of an army crawl because I couldn't straighten myself out enough to walk. A sharper, stabbing pain came on at this point. I couldn't handle any more pain.
We got to the ER and I barely made it inside. The lady at the front desk made me stand there and give her all my info (I remember this because, honestly, I was pissed that she was making me stand there when you could look at me and see I was about to pass out). A few minutes later, long enough for me to get to a seat and sit down, they called me to go get my vitals. The nurse asked if it could be period pains and I said no way, I've never had them this bad before (I forgot to mention that at about 2.00pm that day I started my period). She took my vitals and my heart rate was sky high and irregular. I then had to have an EKG where it showed on paper my heart rate. That got me into a room super fast, thank God, although they later found out my heart rate was out of whack because of the amount of pain I was in. So they did test after test. I had an MRI scan and had to drink stuff so they could look at my bowels. I refused any pain medication because I was afraid I was dying and wanted to be coherent and know what was going on. Finally, they asked if I'd ever had ovarian cysts before - no, I had not. They did an ultrasound and came back and told me I had one cyst on my right ovary and one on my left. The one on the right was larger than a grape fruit and pushing on some organs. It was all jacked up. At this point, I took the pain meds because I knew I wasn't gonna die.
They made me an appointment with a gyno the next morning. This lady was evil. Still in incredible pain, she took no care and said that since I couldn't sit still for the exam (like I had a choice! My God, the pain level was a 20 on a scale to 10!!) she couldn't do surgery laparoscopically because she could tell if the cyst was mobile or not. I had to wait 6 months and see if I still had pain and if I did she would do the surgery. WHAT!? 6 months with this pain!? I found a new doctor. He said I could wait and see if the cyst burst but because of the type of cyst it was, he didn't think it would and if it did, it would hurt more because of the size.
He scheduled my surgery for February 21st, 3 days before my birthday. He said he found endometriosis everywhere, that mine was the worst case he'd ever seen - stage 4. I had bands and adhesions everywhere. I had one band that wrapped itself around my ovary and a huge cyst and pinned the cyst and ovary up with my bowel to the right side of my abdomen. He thought that's why I had so much pain. He tried to clean out as much as he could but he wasn't prepared for what he found when he opened me up. He put me on birth control 2 weeks after my surgery. I bled for 2 months straight and got a hernia from when he cut one of the band's that was attached to the abdominal wall, right above my belly button. He was cold, uncaring and just kept pushing the Lupron shot. I changed doctors.
Since my surgery, I've still been miserable. I have this constant pain in my lower back and recently I've been getting sharp pain on either side by my ovaries. My new doctor told me to stop taking the placebo pills in my birth control so I wouldn't get a period which helped, but now, this constant lower back pain is all I feel. I go in soon for an ultrasound then we'll go from there. If I have another cyst, she'll schedule me for surgery, if not, she wants to try Lupron. I don't want the Lupron - I've done my research and it terrifies me to be honest. I just want some relief from my pain and want my life back.
I have since been offered an opportunity to be part of a drug study through Violet Petal . It's for a new drug called Elagolix that may help with the pain of endo. I still have a bit of research to do before I make any decisions though. I also found out that I now have calcification in my right ovary but I'm not sure if that is connected to the endo or not.
Thank you for sharing your story Rhonda. Your story took me back to my flare up which happened in almost the exact same way. I understand how scary it can be but then, I already knew I had endometriosis. To not know must have been far worse. I hope you find some relief soon.
Can anyone relate to Rhonda's story? Have you tried Lupron? Have you read about the side effects of it and decided against it? Have you had children and then later on discovered you have endometriosis? Remember, everyone of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please email it to me at firstname.lastname@example.org along with a photo and I'll pop it on to here for others to read.