‘There’s NO WAY insurance will cover this. Order a self-test kit off Amazon.’ I BEGGED the doctor to refer me.’: Endometriosis warrior details chronic illness journey, ‘I know my body best’

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“I remember sitting in my car, crying and devastated. I eventually pulled out my phone to call my sister to tell her the news, maybe she’d be able to give me some guidance, and console me on the fact that I likely had an illness I’d be stuck with for the rest of my life.

This was 2.5 years ago. I was newly 24 years old and had just gone in for my first ever pap smear. But I also had some issues I wanted to bring up with my doctor. Over the years I had been experiencing increasingly painful periods, some so bad I felt like I got punched in the gut, doubled over in pain, and like I’d almost pass out. Plus, strange abdominal cramps between cycles, intense bloating, pain lasting days after sex, and flows so heavy I could go through a super plus tampon in an hour. I always thought it was just a painful period, or something I ate, or that the pain was normal. Surely, all women must go through this and it was just me not handling it well.

Courtesy of Melina Sergent-Mouth

But then I started learning more about the condition my older sister had. ‘Endometriosis.’ She told me her symptoms and I thought, hmm that sounds like me, too. And then I saw a commercial from speakendo.com and it listed my symptoms and suggested talking to your doctor about it. So naturally I scheduled the pap and intended to bring up my concerns then.

Only, the appointment didn’t go as planned. I thought I’d bring up my concerns and she would refer me to a specialist surgeon, which was (and is) the only real diagnosis and effective lasting treatment. But that isn’t what happened.

I laid down on the table, with my legs spread open, and I felt the worst pain as she inserted the cold metal speculum and cranked it open. I started to tear up. Not only was a stranger getting personal with my personal bits, but it was excruciating. As she looked around inside me, I brought up the symptoms I was experiencing and suggested that it sounded like endometriosis. After telling her about all my pain, she proceeded to stick her finger in me and wiggle it around. After she was done, she said that her finger and my vagina moved around just fine, which meant if I had endometriosis, that it was nothing serious. Then she proceeded to Google ‘endometriosis’ and print me out a packet explaining what it was. She told me that birth control was my only option. I told her I’m Catholic so I didn’t want to pursue birth control, and that between my sister having issues with birth control and my reactions to medications that I believed it would not good fit for my body. I asked her if she would refer me to a surgeon and she told me that no, surgery was only needed for severe cases and to come back to her when I was ready for birth control. I left the office crying and devastated. I felt like I was left with no options. That’s where I ended up crying in the car on the phone with my sister.

Courtesy of Melina Sergent-Mouth

Several weeks later I found myself on the couch watching Netflix, and sick with a cold. I had gotten a cold every 1 to 3 months since I was in high school at least. And this time, I was FED UP. So I started researching hard!  I joined some (amazing and supportive) Facebook groups for people with endometriosis. One option I had was to fix my diet, but without knowing I was already following it (no gluten and especially no soy amongst other things). I could work on my hormones but I wasn’t sure where to start. I had heard that there were certain chemicals in a lot of home products that contained endocrine disruptors which would affect my hormones and fertility, and then switch those out for harsh chemical free ones. So, while still sitting on the couch, I ordered a Thieves cleaning kit from my friend. I had no time to waste.  I also heard about supplements I could take and promptly ordered some from my friend too. I also could find natural ways to relieve some of the pain, such as through hot packs/water bottles, essential oils, and CBD. These were what I could do while without birth control or surgery.

Courtesy of Melina Sergent-Mouth

But what I really wanted was someone to believe me, and to help me pursue what’s best for me. Over the next several months I started paying attention to my symptoms more and realized I had many that aligned with adrenal disorders: intense fatigue, racing heart that would last an hour multiple times a day like a panic attack except it wasn’t anxiety triggered, low blood pressure, severe dehydration with frequent urination that wasn’t my blood sugar, dizziness upon standing, and gastro symptoms. So, again, I made an appointment with the same doctor. I called and specifically told them I wanted to talk about adrenal concerns. They asked me which ones, and so I listed some symptoms. But when I got to the appointment, I was made to fill out several anxiety and depression forms. Finally, the doctor came in and I told her my symptoms and asked her to refer me to an endocrine specialist. She said, and I quote, ‘No one will see you for those symptoms… you need to see a therapist.’ I pleaded with her!  Practically begging her to refer me. And she told me it would make her a bad doctor to refer me to a specialist for the small symptoms I had. Only it didn’t feel small to me. I’d end up stuck in bed for days with such low energy that I could hardly function. I then asked if she could send me for proper blood testing if she wouldn’t refer me. She told me there was no way insurance would cover it and I could order a self-test kit off of Amazon if I really wanted to. I bawled. I started crying so hard! How is it that I have these symptoms and she doesn’t believe me? How is it that I can’t function like my friends and yet my symptoms aren’t severe enough? How is it that I am not worthy of the help I desperately need?

Courtesy of Melina Sergent-Mouth

I ended up leaving the office and when I looked up on my online chart to see what they had written, it simply said I had made a visit to talk about ‘anxiety.’ I was furious and vowed never to go back to that doctor again. In fact, I went off of every supplement I had been taking, I ordered a health symptom tracker, and for the next three months I diligently recorded my symptoms daily. I also spoke with a friend who too was told she had endometriosis and that birth control was her only option and she suggested I see someone who could help me track my cycle through what’s called the Creighton Method (often used for Natural Family Planning), and then that person would refer me to a naturopath in Seattle who specialized in women’s health issues and endocrine disorders: the exact things for which I was needing support. I finally felt some hope.

Courtesy of Melina Sergent-Mouth

3 months later, and 3 cycles tracked I met with Dr. Cathy Brinton in her small Seattle office. I described everything from the past 3 months that I had tracked. She believed everything I said and took diligent notes. She pulled detailed diagrams up so I could point to my exact pelvic pain, and she even had a chart and paint strips so I could tell her what my bowel movements looked like. 2 hours of talking and no poking or prodding later, she printed me a referral for a blood draw with every test that I had needed for years. After all, while I had been paying specific attention to my symptoms for three months, I realized I had had many of these symptoms for at least 8 years and no other doctor in high school or beyond would test me. Then, we stood up and she gave me a hug. I left that office crying too, but this time tears of joy. Someone finally believed me. Someone finally was going to help me figure it all out. Someone was going to help me feel better.

Courtesy of Melina Sergent-Mouth

After receiving the results from what was undoubtedly the biggest blood draw of my life, I had a follow up with Dr Brinton. She informed me that my iron, vitamin D and B-12, omegas, testosterone, and cortisol levels were not where they should be. I was anemic, with depleted vitamin D levels, who also likely had PCOS: Polycystic Ovarian Syndrome (shown by the elevated testosterone levels). In addition, I likely had endometriosis (endo for short) as I had suggested previously, and my adrenals were unstable (I still have not found the correct term but basically my cortisol levels spike and drop throughout the day as opposed to start high and gradually decrease throughout the day and then replenish at night). I cried again. Everything I had been going through, was FINALLY validated. She put me on a myriad of supplements to help correct my hormone, vitamin, and cortisol levels naturally and sent me on my way.

Courtesy of Melina Sergent-Mouth
Courtesy of Melina Sergent-Mouth

Over the next two years (that’s now) I have met with Dr Brinton every couple months to do smaller blood tests and adjust what’s necessary. It’s helped me control my symptoms tremendously. But there’s more. A little over a year ago I was referred to pelvic floor physical therapy to help with my constant pelvic pain. It feels like there’s a bowling ball in between my sit bones that my vagina is trying to hold in. And so those muscles burn, you know like after a long good work out? Except this happened daily and was definitely not a good feeling. I had just gotten married to my amazing husband, Mitch, and we struggled to have sex. Every time we tried, I would be left with excruciating pain, my bladder would seize up and burn, and I’d have severe pelvic floor and abdominal pain. So, I began pelvic floor therapy (I’ll refer to this as PFT). They should really tell you before hand what that means exactly (basically your PT sticks her fingers in there and moves them around to essentially massage the muscles internally. With permission of course. But still a warning would have been nice). Anyway, from her I learned that in addition to endo and PCOS I also had vaginismus (pelvic floor muscle spasms making insertion difficult), vulvodynia (chronic vulva pain), and Interstitial Cystitis (IC also known as Painful Bladder Syndrome/ PBS). And yet again, I was floored that my first doctor didn’t think I had anything severe and that I only had one option.

From here I began using a dilator set (a set of silicone tools in increasing sizes that kind of resemble some sex toys) to help get my muscles to learn to relax and help with insertion and PIV (Penis in Vagina) sex again. I still use those to this day along with bi weekly PFT appointments.  In addition, I changed my diet once more to help with the IC. Turns out there are a lot of triggers that vary person to person. For me this meant no more sugar or alcohol (er, I do sometimes, I just now know my consequences are bathroom trips every 5 minutes in addition to bladder pain lasting days) and I needed to work on lowering my stress which is a trigger for me. Plus, I now have to use a seat cushion wherever I go. It’s got a strip cut out down the center so that when I sit, I can relieve the pressure on my perineum and muscles. I also now make sure I always have access to a bathroom in case of a sudden flare.

Courtesy of Melina Sergent-Mouth

In the middle of last year, I also started having more frequent episodes of extreme fatigue (so bad I couldn’t hold a conversation or stand for more than several minutes at a time) in addition to joint pain. I met with Dr Brinton and we discovered it was likely that I have either or both Chronic Fatigue Syndrome and Fibromyalgia. Dang, just add another thing to the list. We still don’t know what has caused it, but we suspect I’ve had them for years, and that stress (which I was experiencing at my part time job), and endometriosis were causing the flare ups. I ended up quitting my job, and switching up my supplement routine to add more B Vitamins and joint support to help with my energy levels. The combination has helped immensely and I’ve only had one flare up since in the past 4 months. I now work for myself from home part time (the other half is spent taking care of my now disabled self) helping other people, especially those with chronic illnesses go through their diagnosis journey, while helping them switch chemicals out of their home, take charge of their stress, and pursue natural options (such as supplements when possible).

Courtesy of Melina Sergent-Mouth

Also, I FINALLY got a referral to a well-known endometriosis surgery center in Gig Harbor, WA- the only well know facility in the entire PNW. With 1 in 10 women having endometriosis, it’s pretty shocking. It took 4 months just for my 1st appointment. And it’s been another 3.5 months to my surgery date (which is 2.5 years from the first appointment with that doctor who told me I didn’t need surgery!). At the appointment with the surgeon, she confirmed I had PCOS, and also assured me I likely not only had endometriosis but also adenomyosis (similar to endo, but specifically referring to the endometrium growing back into the walls of the uterus). Again, the confirmation was slightly heartbreaking, but so relieving. This specialist surgeon believed ME. I wasn’t crazy. Everything I have been experiencing has been validated. And now, Jan 29th, 2021 I just have another 2 weeks before my surgery where they will excise (cut out) the endo lesions in my pelvis and abdomen, and do ovarian drilling (poke holes in my ovaries to stimulate them and help with the PCOS and also fertility).  This surgery will hopefully reduce much of my symptoms for many years to come.

Courtesy of Melina Sergent-Mouth

With surgery and official diagnosis for endo coming up shortly, here’s what I’ve learned through my chronic illness diagnosis journey:

‘You know your body best.’ That’s become my mantra. Doctors are not the end all be all. If you know that there’s something going on with your body and/or mind, don’t let a doctor belittle you into thinking otherwise. Keep pursing options.
Share your story. If I hadn’t reached out to my sister, or starting posting on Instagram I would feel even more isolated, and I wouldn’t have learned that my story isn’t as unique as I thought it was. I also wouldn’t have had the knowledge or courage to pursue diagnosis and treatment fit for me.

Courtesy of Melina Sergent-Mouth

Google your symptoms. Yep I said it. Researching my symptoms has led me to get the proper treatment and validation I needed. Most of the time, you have to be the one to suggest to your doctor what’s going on. As I said before, you know your body best.

Find a community. Facebook groups have been a blessing. I’ve found a couple great endometriosis and women’s groups that have been super supportive. With that being said, don’t be afraid to leave ones that belittle you. Not all communities are equal.
Lastly, pursue what’s best for you. Don’t let your doctors tell you that pills and birth control are the only option. Sure, they work great for some people and I’m so glad for modern medicine. But for me and many others, supplements, dietary changes, PFT, and more have been a saving grace. For endo, surgery is awesome, but since it takes an average of 7-10 years to get diagnosed, we have to find a way to cope in between. Plus, it’s important you know your options and choose what’s best for you. You might have a condition that only allows you to use prescription medication (and again amen for that!) but don’t let someone tell you what you are and are not allowed to do to your body. It’s yours. And you know what your best route is.

Courtesy of Melina Sergent-Mouth

Lastly biggest shout out to my husband Mitch who has not only been supportive emotionally throughout everything, but who’s also there physically working, taking care of the house, and taking care of me when I can’t do it myself.”

Courtesy of Melina Sergent-Mouth

This story was submitted to Love What Matters by Melina Sergent-Mouth from Bellingham, WA. Follow her journey on Instagram and her website. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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