Endometriosis: My Story

I've been laying low for a couple weeks... And though this is long and maybe even a little TMI, I want to share why: it's part my story, part PSA. It's a fitting time to share, because March is Endometriosis Awareness Month.

pssst: after you finish reading this post, read my one year update.

If you've followed my personal page on Facebook, you probably have seen my posts about endometriosis. What I've never clearly stated, though you may have guessed, I have suffered many years from this disease. Over the course of at least 12 years, two ER visits, four gynecologists whom all brushed me off, I suffered in sometimes excruciating pain. About two years ago, I finally stumbled into a Facebook group called Nancy's Nook. There, I learned so much more about endometriosis and I learned that the "gold standard" of treatment is laparoscopic excision surgery performed by a well trained and skilled surgeon. These surgeons are far and few between. In fact, many gynecologists and doctors are still taught old wives' tales about the cause and the treatment of endometriosis (i.e. retrograde menstruation) while in medical school. Many women are prescribed a drug called Lupron which is in fact a chemotherapy drug with horrible side effects. And yet it only disguises the symptoms while the disease itself worsens. Others are put on birth control, advised to have a hysterectomy, or told to get pregnant. None of these options work. Or sometimes they are just simply told that the pain can't really be that bad and it must be in their head. Some women do have ablation surgery by their gynecologist but it is unfortunately not as effective as excision.

So, why am I sharing all of this? Because, as often is the case with endometriosis, I became my own advocate. And if my story helps even one more woman to become her own advocate, I will be thrilled. 1 in 10 women suffer from endometriosis and it costs billions of dollars per year in lost productivity, as well as medical care. The economic burden of endometriosis is comparable to other more well-recognized diseases such as diabetes or rheumatoid arthritis.

The wealth of knowledge shared by the women, especially Nancy, in Nancy's Nook, taught me so much. I learned what my best course of action was and sought out the closest surgeon to me. I was excited to learn that one of the best in the field was in St Louis.

Lots of catching up on my tv shows. Lots of reading -- I finally began the Harry Potter series! Lots of herbal tea, water, less pain pills than before, and finally incorporating essential oils into my healing. This was pretty much week two of recovery.

Dr Patrick Yeung has been in the field for several years and he started the St. Louis Endometriosis Center (which is part of SLU, St. Louis University) after starting and running a center at Duke University. Prior to that, he worked with Dr Ken Sinervo, arguably one of THE best in the field of endometriosis.

I had excision surgery on February 15th with Dr Yeung in St. Louis and just cannot say enough good things about him and the staff at SSM St Mary's hospital. He said I was one of the more challenging cases he has worked on, specifically in regards to my left ovary and fallopian tube. He ended up removing my left ovary and tube altogether. They were pretty much fused to my pelvic wall and were very difficult, even for Dr Yeung's expertise, to remove. Turns out I had a left ovarian cyst of 12cm and a right ovarian cyst of 8cm. (After an ultrasound a couple weeks prior to surgery, they thought those cysts were 6cm and 3cm. So nearly twice what the ultrasound showed). He was able to repair the right ovary. Both cysts were "chocolate", which means they were filled with endometrioma.

His work was only beginning though. He had many spots of suspected endometriosis in various locations that he worked on cutting out (those are sent for a biopsy to confirm endo). He told me before he ever went in, he would stay until he was satisfied he had gotten it all. No matter how many hours it took. I believe it ended up taking him nearly 5 hours. He originally thought it would be more around 2.5-3 hours.

He said I've had endometriosis a very long time and was probably in significant pain; but that I've built a pain tolerance against it (none of which was at all shocking to me).

He called it stage 4, with no hesitation. There are only four stages of endometriosis.

He had planned on an appendectomy and good thing, too, as my appendix was in terrible shape. It was ballooned up and not healthy at all. He even called in a general surgeon to help him, partly because he had to remove a piece of the cecum as well.

However, Dr Yeung said he was very pleased with the outcome of the surgery. And I even went home the same day, to sleep in my own bed that night. Dr Yeung is a phenomenal doctor and surgeon. His office staff is absolutely wonderful and the staff at SSM St. Mary's is incredible. Every single person on the surgical team that I met (they all came by the room to introduce themselves over the course of the morning prior to surgery) was kind, had wonderful personalties, and were above and beyond helpful. My nurses were just as amazing.

My tribe. They showed up. Above is just a small look at the food, flowers, and gifts that came into my home while I recovered. The groceries, deliveries, and help given to us while I recovered was immeasurable.

I started my journey with Dr Yeung nearly one year ago. His wait list is quite long; however, he is absolutely worth the wait. I've already been able to hear his post surgery thoughts as he requested it to be recorded so that I could listen to it when I was up to doing so. I also have photos from my surgery. All of this speaks so highly to me of the caliber of his care and is in line with his very pointed view that women with endometriosis must be their own advocates.

I would highly recommend anyone who even suspects they or someone they love has endometriosis to join Nancy's Nook and learn more about this disease. If you're in the STL area, I would encourage you to see Dr Yeung. Otherwise, the Nook has a list of carefully vetted surgeons who will be the same type of surgeon with the similar type of approach to endometriosis as Dr Yeung. And, I'm always happy to answer more questions by message if anyone would be interested.

If you're a fellow endosister, or suspect you might be, go out and educate yourself and be your own advocate. You are worth it. Living in the pain is not. And you don't have to live in the pain. P.S. I'll be sharing some resources with responsible information in the next blog post. There are excellent resources out there for us, but you have to know how to sift them out from the bad science and old wives' tales.

#endometriosis #endosister #endowarrior #endometriosisawarenessmonth