Around the time of our engagement my endometriosis had really kicked in and was so bad that I was in daily agony. I started gaining weight, had to eat constantly and had lower back pain all the time and standing/walking for more than 20 min was impossible. At the time I didn’t know what it was, every Dr. I went to said I was perfectly fine. In addition, I was fatigued and I believe my thyroid and adrenal hormones were off even though the famous endocrinologist looked me in the eye and told me I was in perfect health (I wanted to slap him). When we got engaged we figured it would take about 6 months to plan our wedding. It was a family affair and we involved our immediate families and we assigned tasks.
During one of the planning meetings with family I remember I couldn’t sit still because my lower back was killing me. I would go to our bathroom and lye on my yoga mat and stretch my back and come out. I remember cooking for the meeting the day before in agony; let’s just say the food wasn’t very appetizing. Over those six months things started getting worse. I still made it to work and managed to put in a full day with the help of over the counter painkillers. The hypo symptoms in the morning were so bad that I rearranged my daily tasks so that I spent morning at my desk instead of the lab. Walking to a different building for meetings at work was difficult and I would drive instead of walk 10 min. Sitting straight on a chair was close to impossible. With all this going on I still went ahead with the wedding in the hopes that I will start to feel better.
A couple of months before the wedding I was tested for H. pylori and it was positive. I felt slightly better after the antibiotic treatment but the endo pain was the same. However, I was not going to let my illness get in the way of getting married. At the end of a work day I can barely lift my head from the headrest of my car seat.
The wedding day arrived which started at 6 in the morning. I had told my sisters to carry food for me at all places I was at prior to the reception so I can snack. We had the wedding service in the morning, followed by a picnic and picture session. It was a beautiful sunny day and by the end of the church service I was beat. During the ride to the picnic location I rested a little bit in the limo and out we were in the sun. By the time the picnic was over I was dead. I can recognize the pain face of pictures taken towards the end. My husband was the only one that recognized my pain face. Before the reception I took Advil and took a nap. Picture below taken at the picnic.
During the reception I took more painkiller. I wore sandals, there was no way I was going to manage high heels. My bridesmaids wore high heels even though I had asked them not to and they towered over me. That was the least of my worries. I sat for most of the dancing and would get up every 20 min and pretend to dance :) The wedding party was high energy (except for me) and they were drank and on the dance floor all night while I sat and watched. My husband was out there too dancing for most of the night.
If you see the wedding video you can't tell I was in pain but that is what Endometriosis is all about. You look health from outside while your insides are killing you.
Oh my gosh, what a nightmare! And by the way... from that picture, you look amazing in that dress! Gorgeous! :)
ReplyDeleteThe pain of "invisible illness" is so awful. Very few people understand, or even will try to sympathize for long. I sometimes wish it showed up in bruises or something at least.... so that it would be something that people would understand and see. Not for sympathy... but to get them to stop being angry or disappointed in me for not being or doing all that they think I should... when I'm doing my best and it just isn't enough. So hard!
You know, ever since my latest RE told me that he's almost positive I have endo... but doesn't want to test because it "wouldn't make a difference anyway" ... I've been more and more convinced that it's true. This sounds so much like me. I used to think all the pain was from the PCOS, but others I've talked to don't get all this pain all the time. I'm not even sure what to do about it at this point. Just tired of fighting everything.
Thanks Coco. I understand what you mean. I even get insensitive comments from my mother even though time and time again I have told her when I am in pain and what my pain is all about. It is difficult to make people understand and I am slowly learning to live with it.
DeleteMay be it is worth to do at least one surgery and see if endometriosis can be found. Especially if it affects the organs around (colon etc). It is hard to advocate for surgery for me since surgery did not take away the pain. It minimized it after the 2nd surgery and may have contributed to finally getting pregnant. I don't regret doing it but I am not ready to go there again.
Hope you are doing well and find some relief.