Right out of college I started working in the hospitality industry and my hours were all over the place. I would sometimes work from 3-11pm and then have to be back at 7am the next morning. I would even work an overnight shift which occasionally was followed by a same-day 8 hour shift. My circadian rhythm was completely thrown off (although I didn't know much about that at the time) and I started to deal with a lot of hormone imbalances. My weight was fluctuating, my cycle became irregular, I was experiencing pelvic pain for the first time and I was chronically exhausted. I had no idea what was going on with my body and spent the next few years in and out of doctors' offices.
The scale would go down 10 pounds from Monday to Friday and then back up another 8 or so by the end of the weekend. I had never experienced anything like it. Even though I consistently got my period, I never knew exactly when it was going to come or how long it was going to last. I would experience mid-cycle spotting that would often last up to ten days and my periods would usually come about every 21 days -- it was the worst. I was anxious to visit friends because there were so many occasions when I would spot so badly, I would bleed through my clothes, or onto sheets or couches while I sleeping.
On top of being embarrassed, it was starting to affect my sex life. I would experience random sharp pains in my pelvic area and sex became so painful that it was ultimately unbearable. At first, I would mentally try and push through it, but my muscles would begin to spasm so much, it felt like they were creating a wall. Even my gynecology exams were painful and I would dread going to them, but my desperation for answers pushed me through it. At one point, a doctor thought I had an extra bone in my pelvis but the x-ray showed everything was normal. The only diagnosis they could give me was dyspareunia, which is just a term to describe pain with sex but no reasoning behind it. Oh and of course, most physicians pushed different types of birth control on me because that seemed to be the only solution to all my hormone issues.
Next, I was referred to physical therapist. I spent months going to pelvic floor physical therapy trying to stretch and relax my pelvic muscles which let me tell you, is as uncomfortable as it sounds. How are you supposed to relax when you have a therapist you barely know trying to stretch out your vagina?? And then the exercises they have you do at home with different size dilators -- ugh. even worse. To paint you a picture, which I'm sure most of you aren't interested in but I am going to tell it anyway -- it was like sticking a candle stick up there and forcing it to stay in place for 15-20 mins while my body was literally rejecting it and trying to push it out as quickly as possible. A year later, I was still left without any clear answers and thousands of dollars in debt (because of course health insurance doesn't cover any of this). I was overwhelmed, frustrated and honestly, ashamed of my body.
And that was really the worst part about the whole thing -- that I was so ashamed that I couldn't even talk about it. While others where going on about their sex lives and stories I had to pretend that everything was normal with mine. And it wasn't just me -- my boyfriend was obviously affected by this as well. And although he was respectful about the whole thing, I don't think he fully understood what my body was going through and at that point neither did I, so we just ignored it for awhile. I continued to try different versions of birth control as that was really the only option I was given to help "fix" my cycle issues. So when I stopped getting my period altogether, I figured it was better than the alternative and just accepted this as my new normal. No spotting, no period, no sex drive, sure I'll take it. It wasn't until a few years later when I began to become more mindful about what I was putting in my body, that I started to question the connection of it all.
While in nutrition school at Bauman College, we talked a lot about the negative affects that birth control can have on your body. It depletes you of so many vitamins and minerals, it masks hormone imbalances and alters your hormone levels. I was SO intrigued. I immediately got off of birth control and again my body started going through some crazy shifts. For the first time in my life, I started breaking out along my chin and mouth, hello hormonal acne! I would get so stressed out and start crying every time I was about to get my period, my emotions were all over the place. The spotting came back but my periods didn't at first. It took a few months for that to happen and again they were extremely irregular. I felt like I was back to square one, the difference? This time I was determined to get answers AND I was ready to talk about it.
I went through another 10 or so OBGYNs the next couple of years and it was like pulling teeth trying to get any additional time with them or even having them request hormone panels on my behalf. I again questioned PCOS, Endometriosis, Estrogen dominance, really anything I had ever read about and it was all dismissed. I finally got a full blood panel done and found out that my FSH and LH levels were high and my testosterone levels were almost non-existent. Shocker that I had no sex drive whatsoever. The doctors response to these results? "Well there's a chance you could be perimenopausal but since you haven't once talked about wanting kids, then it shouldn't matter". Was she FUCKING kidding? I had met this doctor once in person and this was her over the phone follow up call with me. I immediately broke down and couldn't believe someone (especially a doctor) could be so cold. I don't want kids RIGHT now but that doesn't mean I never want kids... AND how could she make that assumption after one 15 minute appointment?! I was furious.
So I went to another doctor and another and did more blood work and more blood work. I was in and out of Kaiser so much that year and kept pressing for answers. I wasn't going to give up. I got more ulatrsounds - an abdominal one, a transvaginal one, and a sonohysterography which they claim is painless but I legit started screaming when they tried to do it (they use saline to fill up a balloon type device that expands in your uterus) so they had to stop. Eventually they convinced me to do a hysteroscopy which is like a colonoscopy but through your vagina instead. That one I went back and forth about because I was so nervous about the pain. I swear the only reason I was able to go through with was because I took a muscle relaxant, used tons of essential oils and my boyfriend was in the room with me holding my hand and distracting me by playing Drake. :) The conclusion? Everything looked normal -- there was some polyp tissue but no actual polyp. I asked multiple times to get a copy of the results but to this day was never able to obtain one.
All the while I was doing everything I could to get my hormones back on track. I was reading books like WomenCode, Beyond The Pill, The Hormone Cure, The Hormone Reset Diet, The Sex Issue, I was going to therapy, my boyfriend and I even tried sex therapy for a few sessions and I was really focusing on what I was putting into my body. I did a 21-day hormone reset diet, started adding more fiber and dark leafy greens, took new tinctures and supplements like Vitex and a prenatal, started seed cycling and taking collagen. Slowly I was noticing changes. My hormonal acne began to go away, I wasn't feeling constantly bloated and my weight, although higher than normal, was stabilizing. My sex drive was completely back and I had more energy overall. I started tracking my periods and over the course of about 4-6 months was able to not only predict exactly when they would come but for how long and even extend it from 21 days to 24 days. The spotting became less and for a couple months didn't happen at all! I was able to start managing the pain around my period, however, I was experiencing cramping during my ovulation phase but was unclear if that was normal or not. I was trying to get to bed around the same time each night and wake up around the same time, making sure I got a full 8 hours of sleep.
I was doing everything in my power to stay on track but sex was still an issue. Not only was it a bit awkward now after all of this, but the pain was still there. Sometimes it would be ok while other times it still felt like there was this wall inside of me. Even though my body wanted it, it would still hurt at insertion and if it even got too deep. I began to open up to friends and family about it more at this time and although mainly supportive, I did receive the occasional, "you've been dealing with this for how long and your boyfriend is still with you?" "wow, what a great guy". These comments were hard to hear. The lack of concern regarding my health was extremely hurtful. Does anybody deserve to be having this relationship with their own body? Yes, he is a great guy, but trust me, our relationship was put through many tests during these years.
It was during this time that I had another big transition in my life. I lost my job and went back into the crazy world of hospitality, working whatever hours possible. At this time I decided to start this new business and found myself eating whatever was in front of me. It's no surprise many of my symptoms came rushing back. I went to one more doctor before my benefits ran out and did a full hormone panel again and again questioned the pain and spotting. During the exam she was able to pull up the previous hysteroscopy results and informed me that there was in fact a polyp in my uterus and this was likely the cause of the mid-cycle spotting. WHAT? They told me they didn't find anything?? I was so confused and frustrated. She asked me if I wanted to get it removed but said in order to do so I would need to get another hysterocopy with a new doctor. This was because she would need to confirm the polyp herself before performing the surgery, and the previous doctor wouldn't be available for another few months. Wait, so let me get this straight. I have to go through another day of excruciating pain just to confirm something that we ALREADY know to then come back and get put under to actually get this thing removed? I know it might sound worth it to you -- but at the time I wasn't ready to go through that pain again. The upside? My hormone blood test results looked good and I was determined that the rest would just fall into place once I got everything else back to normal.
I, unfortunately, went a few months without any health insurance so when I got it back again, I was ready to check in with a new OBGYN. After some training on my new health insurance, I learned that if I asked any questions outside of the normal wellness check than there was a chance my insurance wouldn't cover it and I would need to pay a large amount out of pocket (something I wasn't willing to do at the time). So I found a new doctor online, went in for a normal annual and tried to keep it as short and sweet as possible. I quickly informed her that these standard exams are extremely painful for me and she immediately asked, "why is that"? To be honest, I was shocked to hear here ask that -- no other doctor I had seen had ever asked me that. I got many, "I'm sorry to hear that" or "take deep breathes" or I remember one had no empathy for me whatsoever. Again, trying to stay within the normal wellness rules, I just responded, "I'm not sure" - which was the truth. I had NO IDEA why. I then let her know that I also spot in between periods so if I was spotting at the time that was normal. Again she asked, "why?" and I still responded with, "I don't know".
While doing the exam she was extremely gentle, and let me know she would be using a smaller cervical clamp (which I HIGHLY recommend you requesting if you have this issue as well) and was able to do the exam extremely quickly. She pressed around certain areas and asked me if they hurt which of course they did. She then asked if I experienced pain with intercourse and and I responded, "yup"! At the end of the exam she asked me if anyone had talked to be about Endometrosis. Umm...what? At this point I didn't care if this wasn't part of the wellness exam, I wanted more information.
I told her that I had asked about it years ago with all these symptoms originally came up and the doctors dismissed it. That I had done a little more research between now and then but never paid too much attention to it because I thought it was something I could eliminate from my list of things that were possibly "wrong" with me. I informed her about all my physical therapy and ultrasounds and the polyp that they originally didn't find but then was actually there. She asked me if they had biopsied that polyp and I said they didn't do anything with it. She seemed confused -- "why wouldn't they test it"? Unfortunately, I really didn't have many answers for her. She let me know that she specializes in Endometriosis and specifically in robotic laparoscopic surgery, giving me a pamphlet to look over if I was interested. She let me know I could call her with any questions and that although they can't confirm Endo until they actually go through with the surgery and biopsy it, she has been doing this for so long, she was certain that I had it. I couldn't help but break down as soon as I left the office. There were so many emotions running through my body at that moment. Was I really getting an answer after all these years and why did it have to take this long? I had to go down to the lab area to get some additional blood work done and I was a complete mess. The sweet woman who worked there handed my a box of tissues and as I said sorry for crying she quickly responded with, "never apologize for crying" which was exactly what I needed to hear at that moment.
I spent the next week researching as much as I possibly could about Endometriosis and learned about all the crazy long term effects that I had no idea even existed. From infertility to collapsing lungs and autoimmune diseases. I will write about this in a lot more detail soon. For now, I was deciding whether or not surgery was the best option for me. What were the risks? How likely was it to come back after surgery? Were there holistic ways to get rid of it? I decided that after all of this, I just needed to know if I did in fact have Endometriosis and the only way to find that out for sure was through this process. So last week I went through DaVinci robotic excision surgery for Endometriosis.
Four incisions later, my doctor found 8 points of Endometriosis which technically puts me at stage II. They were all located within the lower left area of my pelvis so although it wasn't as much as she normally sees, she said it makes sense why it was so painful. Luckily, my ovaries, fallopian tubes, and uterus all looked clear so it shouldn't affect my fertility. She also decided to do another hysteroscopy at the same time and was able to remove the polyp that was there. I was so relieved that I found this doctor and finally got real answers. My body is still recovering and I know I am not fully in the clear but this Thanksgiving I am so incredibly thankful for this body of mine.
To be continued...
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