In December of 2006, I was diagnosed with endometriosis after a laparoscopy. I turned 21 about one week after my surgery. Since then, I have been on multiple hormonal therapies, none of which worked until I went on Nuvaring in 2011. It worked for about 6 months, then it stopped working, so I was put on continuous low-dose birth control. That is no longer working, so my only option now is surgery.
Here are some of the physical effects:
- I have chronic migraines when not on depo-leupron or a successful hormonal therapy. Since my current therapy is no longer effective, I have one migraine a month that lasts for approximately three days. I cannot get out of bed, endure sound or light, or eat when the migraine is at its peak. If I recognize the migraine (as opposed to a stress headache or sinus headache, which I also have), and treat it early, then I can sit like a zombie and watch t.v. until the migraine passes, and manage to eat toast and drink water. But I cannot drive, go to class, or go to work. As my current therapy becomes less and less effective, the migraines will increase until they last for two to three weeks.
- I have chronic pelvic pain. I am on pain medication for another condition, which dulls the pelvic pain, but in the mornings and after meals, I have sharp severe pains. I have to sit quietly or lay down until they pass. I cannot take non-steroidal anti-inflammatories, which treat both inflammatory pelvic pain and migraines, so my treatment options are limited. As my current therapy becomes less effective, the pelvic pain will increase until it is constant.
- I have irregular bleeding. I am recently divorced and have started dating some, but I cannot predict my bleeding patterns, and that interferes with possible dates, not only for the obvious reasons, but also because of the migraines and pelvic pain associated with bleeding.
- I am lactose intolerant. I was not lactose intolerant after my surgery in 2006. I began being lactose intolerant again in 2009 when my endometriosis symptoms began to be more severe. I have other dietary limitations due to the inflammation, including tolerating small amounts of soy or meat proteins. As the inflammation increases, I will be able to eat less and less.
- I am infertile. I have been infertile for two years because of tumors on my ovaries. As I'm sure you can imagine, this also interferes with my ability to date. When I have my next surgery, I may have a short period of fertility during which I can have children. I am considering harvesting and freezing my eggs, but I can't afford it. I also couldn't afford hiring a surrogate, so I will probably never have my own children. I am 27.
Our stories are very similar. I become sterile at the age of 26 because I had to have a total hysterectomy because the endo had gotten out of control (my intestines were attached to the back of my uterus, my left ovary was infected and swollen to the point it was actually larger than my uterus, endo and adhesions had completely wrapped around my ureters). It was a mess. Even without taking HRT, endo continues to come back! I had a laparatomy in 2011 and within 6 months I had emergency surgery for a bowel obstruction caused by adhesions from that surgery. I feel like I am constantly going in circles. I am on daily pain medication but as you know the longer you take it, the less effective it is and then what do you do?? Thank you for sharing your story and participating in Blogging for Endometriosis! I feel so much better knowing I'm not alone!
ReplyDeleteHello! Your story sounds almost exactly like my friend Joann, who has had multiple surgeries. I'm afraid that's where I'm headed. I left my (abusive) husband last June and I had back surgery in July, so I haven't had appropriate treatment for my endo besides birth control. I'm scared about what they'll find when I go to my GYN next week.
DeleteAlso, I'm really sorry to hear about your situation. Do you have a good specialist? There is a nonprofit research center in Florida - http:/WWW.endocenter.org You should try to contact them and see if they will help you since your case is more severe. I'm considering contacting them. I'm also continuing to do research on endo and will try to post research updates on this blog.
DeleteI have been lucky enough to volunteer with the ERC for the last several years! I actually helped run the GirlTalk program for awhile! Amazing organization! I have been to both the Center for Endo Care in Atlanta and the Duke Endo Center in Raleigh. I am lucky enough to have an amazing local doctor who knows just as much about endo as any of the specialists I have seen so I consider myself very blessed! I go for an appointment next week to see what is the best step to take!
DeleteJamee,
DeleteI'm glad to hear that you are receiving excellent care! I contacted the ERC to get info on specialists in my area, so I will be contacting them to see if they accept my insurance and are taking new patients. I need my 2nd laparoscopy before I go to grad school, so I am trying to get the ball rolling. Good luck on your appt next week!
Allison, you might consider seeing Dr. Cook. You can Skype if you don't live in the area. (I'm four hours and traveled to see him)
ReplyDeletehttp://www.vitalhealth.com/
I am sorry you've suffered so much. I lost my marriage too after he got abusive and had an affair. Life with Endo is so complicated.
Diane, thank you for your suggestions. I will look into Dr Cook and the website. We all share in our suffering. I'm sorry to hear about your ex husband. I hope you are surrounded by love and support. People do not realize that endo affects every part of our lives.
Deleteon the dating front -- my ex-huband eventually admitted that part of the problem was he had trouble dealing with my illness.. i actually understood that, i was just annoyed he didn't say that BEFORE the wedding!!
ReplyDeleteBUT, i later found an amazing man who loves me for who i am and sees beyond my illnesses. when we started talking, even before our first "real" date (met at a party), i sent an email telling him EVERYTHING about my physical issues and saying i only asked that he be honest with himself. he replied, "Not scared off yet!". as we dated, i checked in a few times on how he was dealing with my illnesses...he never stopped saying he loved me even with the messy parts. when i had back surgery, he spent FIVE hours in the recovery room when they couldn't find me a bed. he's picked me off the floor. he's held me when i cried. last month, after two years together, he asked me to be his wife.
i'm not really writing this to sing his praises (i do that plenty on my own blog!). i just want you to know that there are men out there who have big shoulders. never give up and always remember you ARE worth it!
Thank you for sharing your story with me! I know there are amazing men out there. I'm glad you found someone to surround you with love and support.
DeleteAlso thank you for blogging and helping increase awareness about endometriosis. We deserve more than false theories and medical misrepresentation and being told by multiple doctors there's nothing they can do or we're faking it or it can't be endo or worse. Its time to put an end to endo.