1. Tell us a little about yourself (name, age, where you're from)
Hi! I’m Caitlin and I’m 23. I was born and raised in Boston, Massachusetts. I’m currently a Clinical Social Work (Mental Health/Trauma) student living in Baltimore presently.
2. When did you first show symptoms of endometriosis?
I’m not really sure if my first periods at 12 were bad, but by 15 I knew something wasn’t right and I shouldn’t feel this bad, or exhausted!
3. When did you first seek medical attention for your symptoms?
I was 16 when we went to my pediatrician and asked about my pain with periods.
4. What treatments did the doctors first try?
First we tried a birth control, which made me VERY moody! After 6 months of that not helping, she said, I think you have Endometriosis and sent me to a well known specialist who got me in pretty quickly. In my first visit with him, he said “I’m 80% sure you have Endometriosis, and I can get you better” and scheduled my first laparoscopy for one month later. It was so fast, and new to me.
5. When were you surgically diagnosed with endometriosis?
I was surgically diagnosed with Endometriosis in December 2008. They found ‘Stage 1 Endometriosis with clear and red lesions in the posterior cul de sac, and on both uterosacral ligaments.’ He used ablation to remove the lesions. My appendix also looked abnormal, so they ended up removing that too.
6. Were your symptoms relieved, and if so, for how long? Did you use hormonal suppression after surgery?
The strange thing was, my most severe symptoms (GI related) were alleviated post-operatively, but I had some new ones come up such as stomach pressure, severe pain with having a BM and a lot of stomach bloating. I was told that they got everything, and I was fine. That these symptoms weren’t from my Endo and I’d have to deal. I was offered continuous birth control, which I was told I “could stay on until I decided to get pregnant” or Lupron. I chose continuous birth control.
7. Have you had any subsequent surgeries?
So after that doctor offered me no other solutions to my existing pains, I decided to leave his practice. I stuck with a really great GYN, who didn’t surgically treat Endometriosis but helped explore options with me. In the fall of 2009, I went to college out of state and was planning to play Division 3 soccer just for fun. I had no idea everything would come tumbling down. We had intensive training and I literally could not run! It caused an awful pain in my left side. So, I was allowed to do all the other exercises. It was crazy how my body physically was becoming fit, but I was so sick – vomiting, in so much pain, so exhausted. So I spoke with my GYN and the school nurse, and they advised me to stop soccer and go home. I waited out a few more weeks, and come mid-September, I medically withdrew. I expected to be ‘okay’ post-surgery and that surgery gave me even more issues than I ever thought. It was an extremely hard time, and the school was not helpful in terms of finances so I ended up with $6,000 worth of debt for 3 weeks. So over the next year, I explored many options – went to a GI doctor who did an endoscopy (I ended up having erosive gastritis from NSAIDS, causing weight loss & pain) and colonoscopy. Went to a Urologist. No answers. I found another doctor who seemed promising. He was very anti-lupron, and helped explore some other options with me (physical therapy, diet changes, different meds…) before I decided surgery was needed in May 2011. That surgery showed: “Filmy adhesions of the sigmoid colon to the left pelvic wall, moderate GI adhesions of the ileum to the right anterior abdominal at the lower quadrant and mid quadrants, and a 1x1 cm peritoneal window at the interior margin of the right uterosacral ligament” but NO evidence of Endometriosis. So I stayed on continuous birth control, and things DID get better. I left to study abroad in England in September and I did pretty well over there. It wasn’t til spring 2012 that I started feeling worse. To make long stories shorter- I thought I found a truly great doctor, after researching about excision, and had surgery in November 2013. She “saw no Endometriosis, no scar tissue, nothing.” She said my issues weren’t Endometriosis. She offered me no answers, only mirena and (thankfully) pelvic PT. So I started pelvic PT in January 2014, and got my mirena out after a month of worsening pains. My GI symptoms almost immediately worsened off of birth control for the first time in 5 years amongst other issues. After an annoying hemorraghic cyst came up in June/July, I decided to have it removed and realized, why do two surgeries (the cyst and then eventual excision?), I contacted Dr. Robbins in Maine and scheduled my 4th laparascopy which I had August 7th, 2014. He found Endometriosis in newer locations than before: my bladder, uterosacral ligaments, rectum and cul de sac. He also repaired my ovary and suspended it to prevent adhesions, and did a presacral neurectomy!
8. How many total surgeries have you had, and do you plan on any in the future?
I have had four now, one excision. I’m hoping there aren’t any more, but am happy I now have a doctor I trust and who knows what to look for and how to remove it!
9. How are you doing today?
I’m so happy I trusted myself, found support groups on facebook such as Endometropolis where I learned about excision, the research and doctors who truly care. If I had listened to my last doctor, I have no idea what would have happened to me. My surgery worked out perfectly, as I start grad school in a few short weeks. I was really nervous that I would have to struggle through school until I could have excision. My doctor gave me hope, and believed in me and proved that I did not make these symptoms up; my endometriosis was VERY real and active. I’m very excited for my future and my career, and also want to incorporate Endometriosis awareness into it. I’m trying to start a Baltimore area support group, and do something to raise hope. It makes me so frustrated that I could’ve been better a long time ago, and my doctors mislead me for so long.
10. If you could tell fellow Endo Sisters one thing, what would that be?
I would say trust your body. You know you best. Always, always get another opinion and do your research!
11. If you could tell medical professionals one thing, what would that be?
NEVER tell a patient to “deal with pain”! That is not okay. I was told that by numerous doctors. Thankfully I’m very head strong and don’t take no for an answer, but some patients really do trust in their physicians.
12. What would you like the next generation to know about endometriosis?
I would like them to know painful periods are not normal and not something you should deal with. I’d love for them to know about excision, and how successful it can be as well as the co-existing illnesses (IC, Adenomyosis, PFD…) that go along with Endo. I hope that more providers will start doing excision and steer away from Lupron/hormones especially in young women like myself.
13. Has living with endometriosis brought about any positive things you may not have experienced without living with this disease?
It has made me a lot stronger and I think has made me work even harder to get where I have in terms of my career and schooling. School was my big distraction from pain, and gave me a lot of hope. I have also met a lot of wonderful people around the country and world who are some of my closest friends. Endometriosis and pain pushed me to fight harder, and to raise awareness and education to make sure the future generations don’t suffer or feel lost.
14. Please describe any awareness, advocacy, or support efforts, and how this changed your outlook.
I’m planning to start a Baltimore area support group, and hope that we can have some in person meetings. Ideally, I’d love to start a walk or something to raise awareness since so many (especially women!) don’t know what Endometriosis is, how serious it is or about excision. I’m still recovering from my excision surgery but plan to start these things ASAP!
15. What do you recommend to women who are looking for help?
Joining the facebook group “Endometropolis” – it’s more of a research based group, but I learned so much wonderful information! That was where I first heard about excision and thought “huh?! Why didn’t my doctors do this!? Hormones aren’t my only option?” Endopaedia.info is another great resource, as well as the centerforendo.com! The internet is such a powerful tool, especially for a disease like this that is far too common but ignored. Always do more research and be informed. I’ve heard from many doctors at 22 and younger: ‘we can remove your ovaries’, ‘try lupron’, ‘get pregnant’ or ‘just deal’. I’m so glad I did more research and didn’t listen to them, otherwise I would have given up. Don’t be afraid to reach out to others – whether it’s online in support groups, to your friends, teachers, family or doctors.
Thank you Caitlin for sharing your story!
For our list of recommended support groups, informational websites, and specialists, check out our Resources page. Endo Sisters Healing Together meets in Sharon, MA every second Saturday of the month. Join our Facebook group to learn more!