My Story

I’m a pretty private person for the most part, and the thought of sharing my personal medical history on the internet was something that took a great deal of careful consideration on my part. But the more research I do, the more I find that the reluctance of women to share their stories is in part due to the fact that they have often spent years repeating their very personal medical details and symptoms to doctor after doctor, without getting the treatment they need. In many cases, these women are told that this is their “burden as a woman” or worse, not having their concerns taken seriously at all and told that – since the doctor can’t see anything wrong – it must be “in their head”. As personal as it is, I think it’s important for women who feel comfortable enough to do so, to share their story; if not online, at least to their family and friends, so that they may help raise awareness about this disease and help women get the care they deserve!

Background

I came into the world five weeks earlier than intended, at just 4lbs, 10oz in the height of the mid-eighties. Big hair, leg warmers, “Back to the Future”… you get the picture. After losing their first child, a 15-week premature little boy whose time on this earth was a mere ten minutes, my parents were relieved when a brief stint in the NICU allowed me to gain some strength and a little bit more weight. I was healthy and had no complications. Shortly thereafter, they took me home and beefed me up to the point where I looked like a little Sumo wrestler within several months. With two taller-than-average parents, everyone assumed I’d be an Amazon. By grade 1, I was one of the tallest in my class, and by ten years old, to my personal embarrassment and to the delight of my relentlessly teasing friends, I hit puberty: acne, awkwardness, breasts, the whole bit. At 11, I started my period. It was a nightmare; I had to change my super-heavy duty overnight Always about four or five times during the school day. Even then, I leaked constantly. I was the jacket-tied-around-the-waist girl, the one who soaked through the sheets at friend’s houses during sleepovers, and I’m pretty sure my parents had to dip into my education fund to pay for the abundance of pads I was using. I was fortunate enough that my Mum had educated me on getting my period before it happened, but there were times when I seriously thought I might die from the amount of blood I was losing, and that the golf ball-sized clots I was passing certainly had to be vital organs. Managing my menstruation, and the emotional havoc that came with it, was not easy for an 11-year-old.

When I got to high school a few years later, things had only gotten worse. Now, along with the tsunami-esque 10+ day flow, I was also dealing with debilitating cramps, nausea and vomiting, severe mood swings, and blinding migraines (which lead to more vomiting). On average, I would have to stay home or go home sick about two times a month. My Mum knew the drill: Motrin, heating pad, and bedside barf bucket. My family doctor at the time prescribed me Anaprox (Naproxen sodium) for the pain, which did nothing. Super strength Motrin (400mg) was the only thing that touched it. Even then, all it did was make my pain slightly less unbearable. Note: this next part might seem irrelevant to endo, but will become important later: when I was 16, I bent over to do something at work, and I felt a searing pain on the left side of my lower abdomen. When I would press on the area, I would feel a painful lump, which from my knowledge of basic anatomy, I was convinced was my ovary. After being referral to a thoracic surgeon, it was determined that I had an inguinal hernia where my ovary had slipped through the tear in the muscle wall. Although this type of hernia is much less common in women, premature birth can affect the development of the muscle in this area, causing an increased likelihood of a hernia. I was pretty scared when I was told that if the hernia wasn’t repaired, it could cause my ovary to be strangulated and die, since I knew I wanted to have kids one day. The specialist surgically repaired the hernia, and I had some relief, but I never really stopped feeling the painful lump when I applied pressure.

Ok, back to my agonizing menstruation: I do recall one occasion while at an appointment with my family doctor (GP) to discuss my pain and symptoms, the term “endometriosis” was mentioned by the doctor. He prescribed me oral contraceptives (Tricyclen, I believe) and never followed up on the situation after that since my periods became a bit lighter and more manageable, although I’d still be home from work or school once or twice a month. My doctor (of whom I am no longer a patient) told me this was just a normal part of being a woman, and some women just “have it worse than others”. This was compounded by my Mum and girlfriends sharing stories of their own difficult periods or troubles of family members and other women they knew. I really believed that I just had the bad luck of being one of those women who had it worse. Fortunately, my pain and symptoms were never dismissed by anyone, and I was never told it was just “in my head” like many other women have been. However, back then, I only had pain during my periods. If I only knew then what was to come…

One particularly horrifying memory I have was attempting to use tampons for the first time. I had joined the swim team in grade 10, and was determined to excel. I was the first one there at 6:00am before school doing crunches and push-ups before practicing laps. My coach was impressed with my dedication and not being naturally athletic like both of my parents, I was pretty proud of myself. In the back of my mind, I was terrified to get my period, because I knew that when it came, I would be forced to wear tampons, which I had tried quite unsuccessfully (and very painfully) once or twice before in an attempt to deal with my high-volume flow. When the time came, I prepared myself appropriately for the pool, and things were going along fine… at first. My male coach asked me to come out of the pool so we could work on my kicking technique. When I got out, to my horror, I noticed that the water snaking down my leg had a reddish tinge. I was leaking. Oh. Dear. Lord. The coach asked me to hop up on the low diving board on my stomach. I froze for a moment, then did as I was asked, not knowing what else to do. The coach stood behind me and proceeded to move my feet in the manner he wanted me to kick. The last thing on my mind was kicking. I’m not sure how much gore my coach actually saw, since he never said anything, but it didn’t matter. I can’t begin to describe how absolutely mortified I was. I finished the practice, changed and left and never came back. I was too embarrassed to approach my coaches, both being male, which lead to severe shame for quitting. Several months later, my coach saw me at a school event (I successfully avoided him until then), and approached me to ask what happened. I was probably the colour of a tomato. I said something like that it was “very complicated” and didn’t elaborate. The embarrassment and shame of this incident still haunts me to this day. Many women with endo have shared similarly horrifying menstruation-related stories.

Learning How to Fight

Into my early twenties, my menstrual cycle seemed to even out a bit, and my symptoms were not as severe. I had been on the pill for (regrettably), about 7 years. Even when I took a break from the pill for a year, my periods were bad, but not as bad as they were in my teens. Back on the pill though, I found myself spotting occasionally before my period. Shortly after the bleeding started, I experienced pain during my gynecological examination, causing severe pain in my pelvic area. It was a general, raw-feeling pain throughout my midsection that made me feel nauseous. The pain lasted a few hours, then dissipated. Every time I would think about going to the doctor, I would have little or no pain or bleeding for a couple of weeks, so I thought maybe it was just a result of the pill I was taking, since spotting was a common side effect of this one (Yaz). Fast forward a few months: now I was experiencing the same intense raw pain and other period-like symptoms outside my period. This would occur at random days throughout my cycle, with no apparent rhyme or reason. I also began having sharp twinges of pain on the left side of my pelvic area, right around where the hernia pain had been. I finally went to my doctor in August of 2013 (I began seeing this doctor in 2010 after several issues with the previous one). I explained my symptoms and how much pain I was experiencing. He wanted to send me for an ultrasound right away, but said that due to wait times (ah, Canada – “free” health care comes at a price), it would likely be at least a month before I could get in, and advised me to go to the ER if my pain was really unbearable, and that they would do an ultrasound on the spot.

A few weeks later, I had an intensely painful episode. I attended the emergency room at the direction of my doctor, since the pain was unbearable and as I was scared and anxious to know what was going on inside me. Tests ruled out an ectopic pregnancy. The ultrasound revealed a cyst close to 3cm wide on my left side. When I went back to see my family doctor for the full results, he reiterated that they had found a cyst, advised me that it was on my left ovary. He said that a certain type of cyst (follicular cyst) can form when an egg is released from the ovary and the follicle doesn’t break down properly. The follicle can fill with blood but usually breaks down on its own after one or two cycles. My doctor said he would schedule me for a follow-up ultrasound in two months to see if the cyst was still present. I made an appointment with my gynecologist for after the second ultrasound, just in case.

Upon going for the second ultrasound in October, the technician advised me that the cyst was still visible. When I went back to see my family doctor, he had a medical student working with him. The student came in alone at first, and went over my chart. He advised me that the radiologist believed the cyst to be an endometrioma. I was really anxious because I didn’t know what that meant, but it didn’t sound good. I started asking questions and the student went to get the doctor, who explained that it is tissue normally found in the uterus that has somehow spread into the pelvic area and formed a cyst on my ovary. I asked if it was possible that I has endometriosis in addition to the endometrioma, and he said it was possible, especially considering the pain I was experiencing. He said that the only way to know for sure was through surgery, and said I should discuss it further with my gynecologist. He prescribed me Tylenol 3 for the pain, which did nothing at all to relieve my at-times excruciating pain and discomfort.

My gynecologist, who has an excellent reputation as one of the best in my city but mainly focuses on obstetrics (delivering babies), spent time discussing my options with me. which he said is typically agreed medicinal intervention as the first course of action with suspected endometriosis . The three options he gave me were: a) Min-Ovral oral contraceptive (levonorgestrel ethinyl estradiol, a.k.a. Seasonale, Portia, Alesse); b) Lupron (leuprolide acetate, a.k.a. Lupron Depot); and c) Visanne (Dienogest). He explained the pros and cons of each, and I will give a brief synopsis, but please visit ‘Treatment Options’ for a more detailed description (this page is currently under construction, but stay tuned).

Min-Ovral is a combination of progestin (levonorgestrel) and estrogen (ethinyl estradiol), used as a contraceptive method to prevent pregnancy. It is used to prevent ovulation (the release of an egg from an ovary). It also causes changes in the mucus of the cervix, which can make it difficult for sperm to penetrate and fertilize the egg. It can also be used continuously to suppress menstruation and thereby reduce symptoms cause by endometriosis.

Lupron Depot or leoprolide is a medication that has been designed to mimic the actions of gonadotropin releasing hormone (GnRH or LHRH), the hormone released from the hypothalamus gland in the brain. The hypothalamus uses GnRH to send messages to the pituitary gland in the brain, which then sends messages to the ovaries in women, and the testicles in men, telling these organs to produce the sex hormones estrogen (in women) and testosterone (in men). Normally, GnRH comes from the hypothalamus in pulses, leading to the production of estrogen or testosterone. If GnRH came from the hypothalamus all of the time (rather than in “pulses”), it would have the opposite effect and “turn off” hormone production. This is used to suppress the production of estrogen in endo patients, therefore limiting the estrogen available to “feed” the endo. Patients can only be put on Lupron for a short period of time (usually a maximum of six months) and it can have very strong side effects, such as hair growth, weight gain and severe depression. Estrogen add-back therapy in small doses is sometimes used to mitigate the effects of Lupron.

Visanne or dienogest is a form of progestin therapy. Dienogest belongs to the class of medications called progestins, medications that act like progesterones (female hormones) in the body. They are produced by the body and are necessary along with other hormones for normal female sexual development and for the regulation of the menstrual cycle during childbearing years. Progestins reduce the effects of estrogen on tissues such as the endometrium (lining of the uterus) and the breasts. By reducing the effect of estrogen on the endometrium, dienogest helps prevent the endometrial tissue from growing and spreading, thereby helping to reduce pelvic pain in theory.

My gynecologist advised me that whichever treatment we decided on, we would review my progress in six months and decide on the next steps from there. I decided to go with Min-Ovral, the option with the least side effects, while discussing with my doctor the possibility of revisiting the issue after doing some further research. He also prescribed me Ketorlac (Toradol) for the pain, which also had no effect whatsoever.

Research, Research, Research!

Researching endo was nearly all I did in my down time for the next several months. I would probably at least have my Master’s in endometriosis if it were a formal program of study, and likely progressing toward my Ph.D. at this point! Many of the books and resources I used are listed in the “Toolkit” section. A few main points I learned in summary:

1. There are very few resources for women with endo, and in general, the medical community has not given it the attention it deserves so you MUST advocate for your own care;
2. Medication of any type has not been shown to get rid of the endo that is already there and is not typically a long-term solution;
3. You need to see a gynecologist that specializes in endo, NOT just a regular OB/GYN, especially if you need surgery;
4. There is no cure for endometriosis, and the only possibility to get rid of it is with excision surgery performed by a gynecologist who specializes in endo and is highly skilled and experienced in laparoscopy. Even a hysterectomy alone will not necessarily rid you of the pain caused by endo.

After about four months of being on the Min-Ovral steady with only one period, I experienced very few side effects. It was great not having to deal with my period for three months! However, I also experienced no relief of my pain and other symptoms. In fact, pelvic pain was now something I experienced every single day, to a greater or lesser degree, ranging from about a 4/10 to a 9/10. My family doctor had prescribed me Tramadol (Tramacet) since the previous medications were not effective at providing me any pain relief. For a little over a month, the Tramadol left me almost constantly nauseous, but did help make the pain at least somewhat bearable. It made me vomit almost daily for the first little while, and the only thing that seemed to help (without dumping even more pills into my body, as someone who tries to avoid taking pills unless absolutely necessary) were the Gravol natural ginger soft chews. I almost came to the point of refusing to take the Tramadol due to the side effects, because the nausea and vomiting was taking its toll on my daily life and only aggravating my pain. These symptoms gradually faded and now I only rarely feel nauseous in the morning if I’ve eaten acidic fruit on an empty stomach.

I knew that the Min-Ovral was supposed to suppress estrogen production and therefore hopefully suppress the growth of any new endometrial implants. I wasn’t sure if it was actually supposed to help with the pain though, so at my next appointment, I asked my doctor about it and he said in order for him to consider it effective, it should have been helping my pain as well. Since it had not, he wanted to talk surgery.

I asked him about his surgical technique, and he said he would be going in via laparoscopy and cauterizing the areas where endo was present (EEEK!). I asked if he performed excision, and and his reply was, “Unfortunately, we don’t have a laser“. My heart sank and my stomach felt sick (and this time, it wasn’t from the Tramadol!). He said his secretary was on vacation and would call to book the surgery the next week when she returned.

Now I was on a mission. Many of the endo experts say that cauterization is one of the worst things you can do, as it may provide some reliefs in the short-term, but is only superficial and cannot reach the deep endo below the surface. It can actually mask the lesions due to the discolouration caused by burning the top layer of tissue. This means that if and when, after likely several surgeries that provide no lasting reliefs, a woman is finally referred to a gynecologist that specializes in endometriosis, that doctor will have a very difficult time finding and excising the endo as a result of burning and scarring. Because of this, the she may never get the relief she seeks, even in the care of a specialist. It’s like trying to fix a mold problem in a house that’s been devastated by a fire (this is my analogy and I think it’s pretty accurate if I do say so myself 🙂 )

Having a background in biology, and having done my fair share of research papers in university, I feel lucky that I had the knowledge to do my homework and the skepticism not to be pushed into having a surgery I wasn’t comfortable with by a doctor who doesn’t specialize in endo. Even many educated people feel that if their doctor says something, it’s gospel because they are the expert. But after all the reading I had done (and no, this doesn’t make me a doctor and I certainly don’t claim to know it all by any stretch!), I felt like I needed to advocate for my own care, and I wouldn’t settle for the apparent second best – you know there’s a problem when even the doctor himself says “unfortunately we don’t have a laser”! I also happened to have a chance conversation with the receptionist at my eye doctor’s office who said her doctor advised her to “get pregnant as soon as possible because that would cure the endometriosis” and although she hadn’t planned to, she was going to do it!!! (…I just…don’t even have words for this), which reinforced how much I needed to fight to get the best care possible, because obviously, this disease is not being taken seriously enough in the general medical community and women are being told things like this in lieu of proper treatment.

I knew that there were a few specialists with private clinics in the U.S. accepting patients from out of country that were willing to pay out of their own pocket, but the ones I looked into would cost between $20,000-$70,000 for surgery, hospital stay and aftercare. My health is the most important thing to me – without that, you have nothing. However, $20,000 is a lot of money I’d prefer not to shell out if I can be treated at home. I spent several days researching and calling just about every endo specialist in Canada – of which there are about 10 (there are many gynecologists that treat endo patients, but would not be considered specialists). Considering that the population of Canada is roughly 33 million, with approximately half being women, and about 10% of those having endo, that’s 10 doctors for 1.5 million women, or a doctor to patient ratio of 1:150,000.

Most specialists outside of Ontario, the province where I reside, did not accept patients from outside of their province, even if my provincial health plan would allow it due to the high volume of patients they already had. Some doctors required the patient to have already been diagnosed by laparoscopy, or to be referred by a gynecologist. My list of options was growing shorter and shorter.

A Light in the Dark

Finally, I came across a particular doctor based at the Ottawa Hospital. His receptionist informed me that he decides which referrals he accepts, and how quickly they are seen based on urgency. She said that a family doctor’s referral was acceptable, and the more information, the better. As my gynecologist’s receptionist had not called me back yet to book my surgery, I called to see if he ever makes referrals. I was met with a pretty clear “no”. I didn’t want to exclude my gynecologist in my care or lose him as a doctor, but I also didn’t want to lose my chance at being seen by an endo specialist. I felt extremely torn.

I made the decision to ask my family doctor for the referral. On the day of my appointment, I went armed with all of my information to present a compelling case. My doctor was apparently compelled, because he gave me the referral. Even though it was just a small step, I was one step closer to getting in to see an endo specialist, and getting the proper treatment to deal with this disease! After I got the referral, my next big hurdle was being accepted as a patient by the doctor. I wrote and faxed his office a letter than detailed my issues and my concerns, focusing on the facts. I wanted him to be able to make an informed decision on my case, but I also recognized that he is extremely busy and has many other patients in his case, so I kept it concise (clearly a tough feat for me). And then I waited. Patiently, but it was agonizing – literally.

In the meantime, I tried to manage my daily pain as best I could. I was getting through the day with ThermaCare heat wraps (the neck ones fit on my pelvic area like they were made to go there!) and my Tramadol, but some days even those didn’t allow me to function. I was using more sick days at work in a few months than I had in the few years prior. I knew I couldn’t continue on that way for much longer. I was also going to be heading to Tobago for a field course for the MSc. in Wildlife Biology and Conservation I’m completing part-time, and you can’t take sick days in the field. I saw my family doctor and asked if he could prescribe me something stronger for my really bad days. I had read that doctors were really reluctant to prescribe endo patients with narcotics, despite the debilitating pain they are in, when they would readily prescribe narcotics to patients experiencing comparable pain levels on the (albeit subjective) 10-scale, e.g. back pain, groin pain, etc. The last thing I wanted was narcotics. Far from the euphoric feeling some people describe, the few times I’ve been prescribed them post-surgery, they have made me feel dreadful. When I was given Dilaudid, the only liquid narcotic available after my jaw surgery, I opted to forgo it rather than deal with the accompanying nausea and grogginess. But I couldn’t continue to miss work and life events due to pain any more than I absolutely needed to. My doctor reluctantly prescribed 40 Percocets, and told me to use them sparingly. After six months, I still have about 15 left, taking only a half tablet when I really need it.

My pain had made me a shell of my former self with respect to physical activity. I used to run, do yoga, go hiking, and participate in a variety of other activities. Since my endo got worse, I’ve had an extremely difficult time feeling ok enough to be physical, both pain-wise and energy-wise. This is unfortunate, because when I do partake in physical activity, my pain subsides almost completely during it. While in Tobago however, I had no choice; 5:30am rainforest hikes, bird surveys, and countless marine snorkelling surveys kept us moving all day long for 10+ hours a day over the better part of two weeks. I had a few bad days, but was able to cope for the most part with pain medication. Being there was really amazing, because the gorgeous scenery and physical activity kept my mood up and my pain at bay; I didn’t have time to worry about my endo because we were so busy! It was hard work, but I loved every second of it. I vowed that when I got home, I would try my best to sustain these positive changes in my day-to-day life. I was able to do it for some time, but it eventually gave way to the grind again and I was soon back to being in too much pain to exercise regularly.

Somewhere around this time, I started to notice that, along with the deep pain, I was also now experiencing a severe burning pain and tightness. In early June, I received the call I had been waiting and hoping for: Dr. Singh would consider my case and wanted me to come up for an appointment with the nurse on his team, Karen (an RPN). I was extremely grateful, but asked if it was at all possible to see the doctor during my visit, since I was coming from a fair distance away, and although I was more than happy to travel for any appointments, if they could do their best to ensure that I wasn’t coming up unnecessarily, given the distance and expense (i.e. traveling all the way there only to be told that I need more tests or something before they can proceed with treatment). I was informed that the RPN appointment was actually a fast-track, and that there was a 90% chance I would see the doctor on this visit. I was given an appointment for September, which seemed somewhat far away, given my daily suffering. I was put on a wait list in case an appointment became available sooner. In summary, I was given an appointment in July, but since they forgot to schedule me an ultrasound the same day and had no openings when I called to ask if I needed one, I had to go up again for my original appointment in September. Aside from that oversight, the administrative staff has been extremely helpful and patient with me.

At my July appointment, the RPN went through some of the medical intervention options, and while I listened patiently and graciously, I had made sure I was well versed and I was straight forward: I made it clear that surgical management was my top priority. The RPN was sympathetic and commended me for doing my research. She went through my history and asked a lot of questions. I broke down crying when we discussed my fears of being unable to conceive or carry a child.

When the doctor came in, he went over a few things and asked if he could perform a pelvic examination. Immediately, he advised me that he could see that I had a retroverted uterus, commonly seen in patients with endo. He also diagnosed me with pelvic floor dysfunction, a secondary condition sometimes associated with endometriosis. In all my research, I had heard of this; pelvic floor muscle spasms were claimed to be the worst pain imaginable by a number of women, even worse, they claim, than childbirth. It can result from the muscle tension that occurs involuntarily with chronic pain. Even though I knew about this condition, and actually consciously tried to breathe through my pain and relax my muscles since I was terrified of getting these spasms, tensing these muscles is often subconscious.

Dr. Singh also gave me an injection of pain medication into the area where I was experiencing the sharp, shooting pains on my left side where the cyst was. He was not convinced this wasn’t related to my inguinal hernia and subsequent operation several years prior, and wanted to see if this helped with my pain at all. After the exam, he indicated that there were three major things he needed to address with me: 1) the endometrioma cyst; 2) the pelvic floor dysfunction; and 3) the deep pain I was experiencing daily. He said that he understood my hesitation to go the medication route, and put me on his wait list for surgery. In the interim though, he wanted to put me on Visanne since I would be waiting for surgery anyways.

I left this appointment feeling heard and respected as a patient for the first time since I started this battle. I started on the Visanne, and made an appointment with a local pelvic physiotherapist. After several sessions with the physiotherapist (which I affectionately refer to as ”vag physio” – seriously, you have to laugh sometimes, otherwise you will go insane), which included internal and external tissue work and at home exercises, I began experiencing relief from the pelvic floor pain and tightness. Although I was still dealing with the deep “raw” pain as I referred to it, having relief from the burning pain and tightness was huge. I was able to reclaim a part of my life I had lost. Despite everything, this felt like my first real victory against endo.

I had a follow-up visit with the RPN and Dr. Singh in September, and in the morning before that appointment, I had an extensive transvaginal (internal) ultrasound performed by Dr. Margaret Fraser. Dr. Fraser is one of the most intelligent, sweetest, most caring doctors I have ever encountered. Her bedside manner was impeccable, and she genuinely cared about me and my case, which was very refreshing. During the ultrasound, an ultrasound tech and a student were present, and she narrated everything she was doing for their benefit, and also mine. The areas that she discussed during the imaging were ones I had seen referred to frequently in the literature: the pouch of Douglas, bowels, rectovaginal septem, etc. Dr. Fraser spoke with me about my case and my struggles during the examination. She applauded and encouraged my advocacy, which was inspiring. I am really fortunate that I was on a course of Prednisone, a strong anti-inflammatory steroid at the time for unrelated nasal congestion which had incidentally really helped with my pain, or else I think this exam would have been a LOT more painful. At the end of the examination, Dr. Fraser told me that only certain structures are visible in the ultrasound, and of the ones that were visible, no endometriosis or “deep disease” was observed in these areas. Many other parts of the pelvic region however, are not visible by ultrasound, and therefore it is unknown how severe the disease is in these areas without physically looking inside.

At my appointment with Dr. Singh a few hours later, he reiterated that no deep disease was observed on the ultrasound. Because of this, he said that I could consider having surgery with a certain gynecologist in Windsor that had trained alongside him. I felt very anxious and asked why he would not be doing the surgery. He explained that due to the fact the disease didn’t appear to be extremely advanced, and because of the long wait times for surgery and costs and time associated with travel, it wasn’t fair for me to wait – unless I felt very strongly about having him perform the surgery. My answer? “I feel very strongly!” Dr. Singh considered it a moment, and then agreed to perform the surgery himself. He even sat down with me at the computer and showed me YouTube videos of exactly what he’d be doing! I was so relieved.

At the Present Moment – Present in the Moment

Since then, it has been nearly two months and I have yet to receive an exact date for surgery, only that it will likely be in March. This is ok though, because I knew this going in and I feel very grateful that Dr. Singh has taken me on as a patient. I continue to do research, exercises at home, and do my best to stay active. I also meditate, do yoga and journal, and of course make jewelry as outlets for my stress and anxiety – two things which only make my pain worse. I used to feel like endometriosis consumed my whole life, touching every corner of it and effecting everything I care about. Now, although it plays a big role in my day-to-day life, I do my best to not allow it to define me. I have a good life, and I am grateful for everything in it. I am even grateful for my endo, because it’s given me an opportunity to learn and grow. My advocacy, practiced through conversations with women and through my jewelry, has really helped me come to terms with my own disease, and has made it something to discuss, and no longer something to hide. I am learning more every day from my research, other women, and myself. One thing I have learned above all, is that we can’t give up this fight – the fight to raise awareness, inform and empower so that we may seek better care for ourselves and those around us. Because we deserve better.
#Endostrong #Endoawareness #endosisters #endohappy

Update: I got my surgery date! Not until March, but it’s a light at the end of the tunnel!

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5 thoughts on “My Story

  1. Thank you so much for sharing your story!!! I wish you all the best in the coming months as you prepare for the surgery. Praying that you will find answers and have a speedy and successful recovery following your surgery! This website, your products are fantastic! I wish you well with your health and your business endeavors!
    -Andrea

    Liked by 1 person

  2. Ha! I was a premie, too! 3.5 months early, weighing 1 pound 15 ounces. I don’t have a retroverted uterus, BUT do have a septated vaginal canal with a dual cervix! And was always that gal with the tree-trunk-pads and a sweater tied around my waist. 😉 Oh, I just feel SO much closer to you, EndoSister! ❤ Keep us posted on your surgery, Love! Yours, Lisa.

    Like

    1. That is so incredible that you were sooo tiny and survived!!! Obviously you were put here to do important work, Lisa 🙂 Wow, I have never even heard of a dual cervix – crazy! I feel so much closer to you too, endosister!! Thanks so much for sharing my story and for all you do to raise awareness!!! Your kind words brought me to tears (the good kind) and I feel so grateful to have connected with you! – Courtney xo

      Liked by 1 person

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