Chapter 44: Interview with Sara Beaudoin

This is the first installment of a new series on my blog- interviews with other members of the endometriosis community. Not everyone experiences endometriosis the same way, so I wanted to share other peoples' experiences so that readers can know what signs to look out for. I hope to eventually expand this to talk to medical professionals in the endo community too.

My first interviewee is Sara Beaudoin, founder of Dot Period Clothes. Sara will share her experiences with endo symtoms before and during pregnancy as well as her inspiration to start her own company. I have Dot's endo yellow hoodie and I love it! It is the most comfortable thing I owe.

1. When did you first learn that you have endo?

I was 18 and I woke up in the middle of the night from excruciating pain in my lower abdomen. I thought I had to pee really bad and I made it to the bathroom but then I knew something was wrong and at that point I wasn't able to walk. I had to crawl from the bathroom to my mom's room. Later on at the hospital, there was a doctor who was asking me questions, one of the questions being: "Is sex painful?" To which I replied "No." And the answer confused him after reviewing all my other symptoms. He left and I really started thinking hard about his question and I realized that yes, sex WAS painful. But I was so used to the pain with intercourse that I just thought it was normal, that I wasn't doing it right, or that it was the position or something. It turns out I had Endometriosis, and the pain that woke me up in the middle of the night was a ruptured ovarian cyst.

2. What are your symptoms?

Painful sex, to the point that I developed FTP regarding intercourse. (Fear, tension, pain). I would be afraid of it, because I knew that just one thrust that was too deep or too hard would be like a knife stabbing me. I have cried during sex because of it. Related to that issue, is pain with bowel movements. Years and years of painful BM's, crying and praying in the bathroom through the pain and then finally a doctor suggested that I start taking Magnesium daily. One week later the pain was gone. I was so happy, but at the same time so mad that I had suffered for so long. So that and the painful sex was related because there are endo lesions somewhere between my vagina and rectum which is why intercourse can hurt. Also, sitting down too fast or too hard would cause me the same pain. I had laparoscopic surgery but that also made the symptoms worse. Not even a year later after that, during my period just walking would be excruciating. The impact of my feet hitting the ground would resonate deep in my pelvis area and hurt so badly. I was barely able to tip toe some days. After that I got on hormonal birth control to minimize the symptoms, for almost 7 years, which came with it's own set of symptoms unfortunately. Another symptom has been SIBO (Small Intestinal Bacterial Overgrowth). Endo and SIBO come pretty much as a pair, something I did not know until this year when I started working with a Certified Women's Health Coach who diagnosed me and specializes in that. For 6-7 years of having "endo belly" and having horrible bloating after eating and looking super pregnant, I discovered that it wasn't "endo belly" it was SIBO and that was also years of unnecessary suffering that I endured. I cried with joy when my test results came back positive, but I was also upset that no one, and no doctor had ever said... "Oh, you have Endometriosis, and you have horrible bloating issues... you need to see a GI doctor..." or anything to that regard. I will forever be thankful to Jessica Duffin, WHC who diagnosed me and suggested I see a GI doctor. I would not have been able to get this far along in my pregnancy had I not started treatment for the SIBO and started to manage the symptoms. During flares I would look more pregnant that I do now at 6 months! Can you imagine what would have happened to my body if I hadn't gotten the bloating down? I would have exploded!

3. How has endo affected your pregnancy?

Endo has affected my pregnancy first and foremost, mentally. I was terrified when I found out I was pregnant. I wasn't trying, in fact, what I was and had been trying for 3 years was to get my health insurance to cover a Deep Excision surgery with a specialist. That was what I wanted to do before I started trying to have kids, get rid of the endo. So when I instead found out I was pregnant, it was so unexpected and I was so afraid of the unknown and what that would mean with my Endo that I think I was in shock for a few days. Afraid of an ectopic pregancy, Endometriosis pain with pregnancy, and I still have some fear about pain with delivery. Will pushing the baby out cause me the same pain that I would experience going to the bathroom? I don't know, my OB said that it's possible, but I won't know until I'm going through it. Thankfully, so far with this pregnancy I have just been surprised over and over again with how perfectly it's going and how healthy the baby is. I'm now 6 months and getting close to my 3rd trimester and the Magnesium is helping as well as it usually does. Constipation with pregnancy is already common and with my Endometriosis and SIBO on top of all my organs moving around it's making it a little difficult. But the pregnancy sort of acts like hormonal birth control so that has helped with some of the symptoms.

4. Tell us about Dot Period Clothes, how you got the idea, where you hope the company will go in the future, etc.

I had been focusing on trying to get health insurance to cover a Deep Excision surgery with an Endometriosis specialist. A surgery that is $15,000 out of pocket because health insurance does not cover deep excision, they only cover laparoscopic ablation which burns the top of the lesion from your organs but then leaves the rest below in your tissues. They actually use the same surgery codes for both of those procedures which is why it's so difficult and why the excision specialists remain out of network. So one day I thought about selling t-shirts to raise money for my surgery, and then I started Googling Endo t-shirt, period t-shirts, etc... and I couldn't find anything on the market that was similar to what I was thinking of. From there I thought to my self, how is it that there are no companies that make comfortable period clothing for women? We have pajamas, we have lingerie, we have swimwear and sportswear... but no period wear... why? When every month out bodies go through a menstrual cycle, and I know first hand how uncomfortable clothes are at that time, and honestly, all the time for me due to the Endometriosis. I had not worn jeans in almost 9 years. Leggings were the only pants I could wear, ever, and I would fold them down underneath my belly. So my brain just started spiraling with this idea of period clothing, not just t-shirts, to fund my surgery and then go on to fund other women's surgeries, because I knew I was not the only one who could not afford $15,000 cash to get the care the needed that would increase their quality of life. So, while the company has not even been up and running for a year, I hope that it will continue to steadily grow to start gaining profit, that surgeries can start to be funded and that we will spread awareness and confidence around women's bodies so that the young girls that come after us aren't ashamed about painful sex, or try to hide or deal with their symptoms because they think it's normal. I hope that menstruation is no longer taboo and that by wearing our periods on our sleeve we will eventually shorten the length of time it takes for girls to be diagnosed with Endometriosis.

5 Any advice for women who think they have endo?

My advice to anyone wondering if they have endo is to follow their gut and not ignore it. Above all be your own advocate and learn about your body so you can tell the doctors what you need. Don't let the doctors tell YOU. I was diagnosed and had surgery for Endometriosis in 2008... in 2017 a female gynecologist told me she didn't think I had Endo... the frustration and lack of education is real when it comes to Endometriosis. So you have to basically treat yourself and fight to receive the gold standard of treatment which is Deep Excision. My #1 thing would be to start off with diet first, getting on an anti-inflammatory diet and following the Primal Food Pyramid, interviewing doctors until you find one that will listen to you and take you seriously and diving into the Endometriosis community and doing your research. There are no silver bullet one and done fix all approaches for this condition. It is a whole body disease and everything is related. With that said, dive into community because you will find the most help there but DON'T also just take their words for it either. There were countless posts and stories and pictures after picture of "Endo Belly", so I thought that's what was going on with me and nothing would help until I got my Deep Excision surgery... well, that was false, and just with Diet alone I was able to reduce my painful bloating by 75%. That's a lot when you are having flares that don't allow you to stand up straight, walk, or sleep. So keep looking for answers, keep listening to your body and remember that it is a process, it takes time and patience and you have to allow your body the time to start healing. Pelvic Floor Therapy is also highly recommended for painful penetration during sex and endo lesions, there are so many resources out there... just remember, you won't get them from your doctor. You will have to search them out.

I hope you all learned as much from Sara as I did! I had no idea what SIBO was and I definitely have some more reading to do about the connection between endometriosis and SIBO! If you or anyone you know would like to be featured in this series, please let me know!