My ectopic story and experience

[tinyjewel]

I just wanted to write about my ectopic journey when I was ready to. So how it started was I had been VERY active in sports prior and was bleeding (just thinking it was my period) and my work is also very strenuous, so I just figured I was sore from being so active. I went to get a massage the next day and almost threw up when she touched my lower back and I had no idea why. I then had such horrible back pain during the night (which was already happening the week prior) that I was crying and couldn’t sleep for almost three nights in a row, which never happens to me. I sleep well and my back literally never hurts. I took myself to the Urgent Care doctor and what at first appeared to be kidney problems, turned into a pregnancy diagnosis. I was in shock, to say the least. I then went to work for the next week and felt awful at work. I was pale, wincing in pain and had to chug handfuls of Tylenol.

I then began to bleed very heavily and knew something wasn’t right. I went to the Emergency Room and had bloodwork and an ultrasound done. However, they couldn’t see anything in the ultra sound yet because my numbers were pretty low still 300-400?. The emergency room just told me to come back if I kept bleeding and had pain. Which I did, continuously and was hoping that every day it would just go away.
I started to wonder if I was just having a miscarriage because I had never bled so heavy in my life. I called the emergency nurse line, and they told me I should come back in for another ultrasound. This was about a week after the first one. The ultrasound technician found the ectopic and I had to go back to the emergency room for my first round of Methotrexate. I was very nervous, but persevered and wanted to just have the bleeding stop.

I experienced a lot of pain after the first treatment. I bled more than I had before (which I didn’t know was possible) and it shocked me and sort of freaked me out. I had very large clots that came out for weeks. I also had a “smell” to myself. My boyfriend couldn’t smell it, but I smelled different. My body odor and my blood smelled weird and there was no amount of baths I could take to make it stop.

After I did a lot of labs and bloodwork, my numbers weren’t going down fast enough (my numbers didn’t drop enough after day 4) and I had to do another round of Methotrexate. I did everything by the book the first time; I didn’t have any folic acid or folate and I hardly ate all because I was in so much pain and was very lethargic. I also drank only decaf green tea, but much to my dismay, I had to have a second round of Methotrexate. The second round went smoother at first, and then I had horrible pain later that night, that I couldn’t get to go away with Tylenol and baths. (I know baths are not recommended when you could have a rupture, because you could faint, but I was so desperate and had my boyfriend keep an eye on me) The pain was so severe, I went back to the ER in case I had a rupture. This was my third time in the ER. I was then hospitalized for two days as they kept an eye on my bleeding and more importantly, my pain. The pain finally subsided on day four after the second round of Methotrexate. I was released and sent home. I kept having sharp pelvic pain every now and then for the next two-three weeks, as well as bleeding but no clots. I finally stopped bleeding and finally my numbers went down. All in all I think I bled for eight weeks or longer.

The entire experience was intense and scary. I still don’t feel like myself at times and still feel lethargic and low energy. I feared a lot of things during my ectopic: my mortality, the methotrexate, the “is this normal pain or a rupture” thoughts, the loss of a child and many other thought and emotions. I tried my best to only take it a day at a time and not to let negative thoughts consume me. I also just tried to rest as much as I could and drink a ton of water.

I had great doctors and medical staff that were very supportive, thank goodness. I had friends and family calling to check in on me and a partner who was also scared but helped me to go through it.

I missed ten weeks and counting of work. I am scared to go back to work, to exercise (which was my LIFE before) and this experience changed me as a human. I just wanted to write all of this because when I was going through it, I didn’t find a lot of information about how other people felt physically and emotionally.

If anyone has any questions, just shoot me a message I would be more than happy to discuss my experience, or your experience with you. Hang in there, you are not alone. It is hard but you can do this. I hope my story helps you in some way. Everyone's stories have helped me to heal and I might be able to do the same for others.

[Tweetypie29]

Thank you for sharing your story and I’m so sorry you had such a hard time. I really hope that you start to feel better soon. Please could I ask what your HCG levels were and did they continue to rise? What level were they when you had your first methotrexate injection?

[tinyjewel]

Yes, I was at 490 when I got my first injection and it rose by the 4th day after when I recieved another lab to 706 (which it is normal to have a rise) However, when I got another lab done a day or two later it only dropped to 611. My number wasn't dropping at the speed its should (from 706-611, they said it should drop down more than 30% after day 4), so they gave me a second injection. The day of my second injection I was in the 500's and it continued dropping each blood draw after (day 4 included). It took another 3 weeks thereafter for it go down to a negative number.

There are some women who have to have more than two injections, etc. There are some women surgery doesn't work and have injections, and vice versa. It all is really relative to each individual.

But the most important lesson I learned was to just have grace with yourself and know that you can do this, even if it's weird, scary, painful and unknown.

Methotrexate was annoying, but it really it wasn't the end of the world. I was just nervous about it in my head. I thought to myself, if I ever had cancer, I would also have to do chemo (and that is a much higher dose of Methotrexate) and if someone with cancer can do it, I can do it.