Share Your Story : Josi

bigstock-Don-t-Give-Up-Phrase-On-Blackb-4003414-300x200Josi is 19 years old and lives in Torrington, WY.  She was diagnosed with Endometriosis just two months ago.  Like so many women, just knowing there was a cause to her pain gave her a little bit of peace of mind and she has begun her journey toward relief.  Josi hasn’t let this pain stop her from living, as she recently married the love of her life and is moving forward with hers!

Josi’s Journey: I started vomiting constantly and experiencing bad pain at 11 years old. I thought it was anxiety, and didn’t get it checked out for a couple years. At 14, I finally had a scope done to reveal a hiatal hernia. I thought, “finally, this is the cause!” And began taking prescribed medicines for acid reflux and IBS. Nothing helped. Another scope. Nothing new.

The doctors then thought it must be my gallbladder, or my stomach emptying too slow – and thus began tests and CT scans and swallowing of awful liquids. Nothing. December 27th, 2012, my gallbladder came out. And everything got worse. Now all the food I eat gives me diarrhea and I get nauseous. Six months later, I was sent 9 hours away to a surgeon who performed a partial Nissen Fundoplication – he wrapped my stomach around my esophagus on June 4th, 2013. Finally, after six years, I could lay down without vomiting (I used to sleep sitting straight up.) This was supposed to fix everything.

I then got engaged to the love of my life and married on July 5th, 2014. The pain had been growing, and now I couldn’t work and was in bed often, with my hot lamp and recurrent hot baths. An old therapist referred me to a women’s clinic and I eventually had my diagnostic laparoscopy on October 29th, 2014. “Endometriosis Confirmed.” Yes! An answer! Pain will be better now, she scraped the tissue out!

It is now almost New Years and pain is still horrible, I am almost halfway done with Lupron Depot. It is a horrible drug, and hasn’t helped yet. I am so elated to know where my pain has been coming from for now 8 years. The problem I thought was fixed was actually 2 problems, one fixed, one still in hiding. I am frustrated, confused, and utterly and demonically hormonal, but I have hope. Now that I have the answer, I can begin this journey to relief.

Words of Advice for Us: Don’t give up. Surround yourself with people who BELIEVE you. My mother doesn’t want to hear about any of this. So I have to be careful with her. That’s okay! Realize that some days, it is okay if you don’t clean the whole house or climb a mountain. You are breathing, you are alive. You are a conqueror by doing so.

The Last Word: It has been life changing to open up to other women who suffer the same thing. I have friends who “have been there.” So, when they tell me that it will be okay, I can believe them. Don’t be afraid to open up! ♡ All my love and support.

If you wish to contact Josi, you can send her an email: jackson.josi14@gmail.com

I want to send a special Thank You out to Josi for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!   Keep us posted on your Lupron Depot treatments, hun.  I’ve got one more injection before I’ve wrapped mine up; just know that it gets a little bit easier as the months go along…

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

My Endo Tattoo

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It’s finished!  My tattoo memorializing my diagnosis and excision surgery of Endometriosis.  It’s fresh, hot off the presses, and still gooey, a bit wet and shiny, but I didn’t want to wait before sharing!  I’m sure there will be better photographs in the future. 🙂 I love it, so very much.

If you don’t yet know what Endometriosis is, it’s an invisible, chronic disease that effects 176 million women worldwide.  Implants grow inside of our abdomen, causing severe pain, inflammation, bloating, and other complications such as scarring that weaves our organs together. Doctors can surgically remove the growths that permeate our abdomen, but they grow back and subsequent surgeries are required.  Many women control their symptoms with diet and supplements, but it doesn’t work for all women.  And there is no cure to Endometriosis, nor effective treatments. More info can be found here.

A bit of history and meaning of my tattoo:

Owl

I have a special sort of anatomy…a septated vaginal canal with a dual cervix, but only one uterus. “What is that,” you ask. Your vaginal canal is likely a singular “tube” (I like that word…haha) leading up to your cervix.  Mine is split in half: I have a left side and a right side, and likewise have a left cervix and a right cervix.  Both are fully functional and operational 😉  I require two tampons during my cycle (one on each side) as well as two pap smears each year (again, a left pap and a right pap).  TMI? Too bad! Take your left hand and form an O with your fingers, now do the same with your right.  And put the two O’s together.  Voila : my special anatomy!  These two big O’s remind me of owl eyes (I obsessed on owls after my dual cervix/canal discovery…)

So, for my tattoo, I have an owl.  It represents my lady bits. 🙂 Owls are also associated with change, wisdom, intelligence, and death (interpreted by many as a “life transition change”).  All of which I have gained since my Endometriosis diagnosis, which has also drastically changed not only my emotional life, but my physical well-being, diet, and mindset.

Blue Lotus Blossom:

While researching things for my tattoo, I was fascinated to learn that lotus blossoms are “born” in mud & grime.  They rise up each day up out of the muddy waters and unfurl their petals, clean as a whistle.  Beautiful.  And each day they retreat back into the murky depths, only to be reborn in the morning, again beautiful.  Blue lotus blossoms are held in ancient Egyptian culture as a sign of rebirth and renewal.  And Buddhists believe it symbolizes victory of the senses, spiritual wisdom, and intelligence.  I have been given a second chance in life since my surgery and treatment.  For the moment, I am pain-free, and now know what that feels like!  I have been reborn, renewed.  And also since my diagnosis, I have learned, and continue to learn, SO very much!  Not only about my condition, but about myself.  And continue to grow.  The blue lotus blossom also personally represents to me that great beauty can come out of the worst of situations.  A necessary element in my tattoo.

Barbed Wire:

As any Endometriosis sufferer knows, it hurts like hell.  Many women refer to it as barbed wire tearing up their insides.  It’s true. It’s what it does feel like.  So, the barbed wire represents the pain of this disease.

Yellow Ribbon:

The yellow ribbon stands for hope and raising awareness of Endometriosis. hold

Drop of Blood:

For each surgery I have regarding my Endometriosis, a drop of blood will be added.  It will be a way for me to not only keep count, but to remember.  And to endure and thrive.

If you haven’t seen the Sneak Peak photos of my first session, you can see them here.

A HUGE thank you to my artist, Will Novotny, of Bad Influence Tattoo.  Not only did he design this glorious beauty, but asked questions about it’s meaning, Endo, and was, as always, charming and witty throughout the entire process.  If you’re ever in the Fountain Valley, CA area and crave some ink, I will always highly recommend him.

Do you have your own Endometriosis tattoo?  I’d love to see it!!

Resources:

BadInfluenceTattoo.Com

BuddhaNet.Net

Buzzle.Com

LotusFlowerMeaning.Net

Macrameowl.Com

SpiritAnimal.Info

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Share Your Story : Courtney

Courtney

Courtney lives in Canada, and was diagnosed with Endometriosis a year ago, when she was 28 years old.  Now 29, Courtney makes beautiful jewelry and donates a portion of her sales to Canadian charities that deal with Endometriosis and other women’s health issues.

Courtney’s Journey: 

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…

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 intercourse and during gynecological examinations, 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! 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 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!

Words of Advice for Us: The 4 Most Important Things I Have Learned in my Own Research on Endo: 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.

The Last Word: Educate! Advocate! Be Heard! I cannot stress these enough! You really need to educate yourself as much as you possibly can about your disease so you can make informed decisions about your care! I continually hear heartbreaking stories from women who have understandably followed the guidance of their doctor, only to have had to endure horrific side affects from medication, unnecessary and ill-performed surgeries, and borderline emotional abuse from not having their pain and symptoms acknowledged and understood by their doctor. There are a handful of specialists that unofficially specialize in endo and are amazing at it (there is no official sub-specialty for endo in gynecology, although there should be as the disease is so complex and poorly understood), so make sure you find one. It may require a lot of researching and even travel on your part, but trust me, it’s worth it!!! Get connected to support groups online and in your community – they are invaluable! Especially when you feel like your partner, family, friends, regardless of how supportive they may be, cannot truly understand your disease, because they don’t have it. Us endosisters get it and can support each other, demand better care, and make our voices heard!

Love and hugs, Courtney Splendometria Jewelry Co.

 

If you wish to contact Courtney, you can reach her the following ways:

Follow her blog: http://splendometriajewelry.wordpress.com/

Send her an email: splendometria@gmail.com

And if you wish to purchase her jewelry and donate to various Canadian Endometriosis / Women’s Health Charities, her Etsy store is here.

 

I want to send a special Thank You out to Courtney for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!  Please keep us posted on your progress and upcoming surgery!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays (early)!

lotus-215470_640I will be gone for the holidays this Friday, so I’m posting today!

Today’s quote is by author and motivational speaker, Dr. Masaru Emoto:

“If you feel lost, disappointed, hesitant, or weak, return to yourself,

to who you are, here and now and when you get there, you will discover yourself,

like a lotus flower in full bloom, even in a muddy pond, beautiful and strong.”

Dr. Emoto has also done numerous studies on the effects of positive and negative speech on water.  The results are beautiful and can be seen here.

So please remember : be good to yourself.  Speak and think positively of your condition.  And you are beautiful and strong!

Much love to you. And happy holidays.

Yours,

Lisa

Suicide & Endometriosis

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I find it interesting that both the Endometriosis Awareness ribbon and the Suicide Awareness ribbon are yellow ribbons…

Today while perusing Facebook, I ran across a post where a Virginia Endometriosis Awareness group had posted that there’s been 8 women who committed suicide this year due to their Endometriosis.  Where they got their stats, or if it’s just in VA, or…national…or global…I don’t know.  (For clarification on these statistics, see the Comments Section below). But, I do know that that’s 8 too many…and I was struck dumb, literally frozen in my chair struggling not to cry.

I must admit that I’ve been in the throes of depression, but blame it on my Lupron Depot.  Depression is something new to me, and I’ve only had it since I’ve started my treatment.  So I’m looking forward to it leaving my system after my last injection and getting out of this Pity Party mood.

But I have also been contemplating the endless cycle that is Endo: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, and snake oils.  I could easily see where suicide would creep into the minds and hearts of women who have just endured too much.

Which breaks my heart even further.  We need to uplift ourselves, and our fellow EndoSisters.  We must continue to forge and hold onto hope. Suicide is not the answer.  Life is worth living, regardless of our pain…

There have been no formal studies of a link between Endometriosis and Suicide.  However, the constant pain, hopelessness, and depression that many EndoSisters suffer from could easily lead to that outcome.  Scouring the internet for details, stats, or studies has proven fruitless.  Just endless blogs and forums of Endometriosis Sufferers contemplating suicide and reaching out for help, or discussing the past suicides or attempts of other EndoSisters.  That alone tells me of the gravity of this problem.

If you are having suicidal thoughts, please call a Suicide Prevention Hotline in your area:

Australia : 13 11 14

Bangladesh : 01985275286

Canada : 1-888-353-2273

Cayman Islands : (345) 949-0290

Ireland (Republic) : 116 123

Ireland (Northern) : 08457 90 90 90

New Zealand (within Auckland) : 09 5222 999

New Zealand (outside Auckland) : 0800 543 354

United Kingdom : 0800 068 41 41

United States : 1-800-273-8255

San Diego, CA Suicide Hotline: 1-800-479-3339; (619) 641-6992 TDD

Or email me!  lisa@bloominuterus.com.  Or you can join the Facebook group “Shoulders for Sisters,” a suicide prevention group for women with Endometriosis.  Follow the link here. We are in this together and you are NOT alone.

Resources:

ChronicHealing.com

DailyStrength.org

EndEndoForever.com

EndoChick.WordPress.com

Endometriosis.LiveJournal.com

gov.ky

Hormones Matter

Kaan Pete Roi

Kokomoperspective.com

Lifeline.Org.Au

Lifeline.Org.Nz

MedHelp.org

National Suicide Prevention Lifeline

PopGoesTheFeasible.com

Papyrus

Samaritans.org

SuicidePrevention.ca

Wikipedia.com

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Share your story!

Have Endometriosis? Share your story here!

Bloomin' Uterus

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So it hits me last night that I want to allow YOU to interact with the readers of this blog!  If you feel so inclined, SHARE YOUR STORY!!!

I’ve started a page (click here) that allows you to submit your information to me, and I will post it on the blog! Nobody else will see it until I publish it.  Only submit what information you are comfortable with!  And I will only publish what contact information you allow me.  I will not use or sell this information for ANY other purpose than to post on the blog and share your story!

Interested?  To get started, click here!  OR you can click on the “Share Your Story” link in the upper right of this page!

I’m excited!!!!

Yours, Lisa

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Camping with friends

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So this weekend was my first camping trip since my surgery, diagnosis, and diet change.

What an experience.  I figured it was only ONE day & night so I’d just eat my old camping food (MREs or dehydrated MountainHouse foods).  I brought fruit and nuts for snack foods, too. And plenty of water.

Boy, what a mistake.

Friends were cooking fajitas over their camp stoves, which I resisted.  Other friends made beef & cheese tacos for everyone.  Which I also resisted.  What I didn’t resist were the Fritos… or the beer…or the Bisquick pancakes in the morning.  I didn’t end up eating an MRE, but did enjoy the MountainHouse Chicken & Rice meal…So here I was with plenty of wheat-based products, a bit of dairy, processed foods and sugars…which I have been avoiding as much as possible for the past six months.

But today, today my stomach is hosting a riot!…The only way to really learn that the Stove is Hot is to touch a burner…only make that mistake once.

Next time I know better: I’m packing an ice chest with my salad, my tea fixin’s, fruit, nuts, turkey dogs, and a few other “easy to haul/easy to fix” meals appropriate to my EndoDiet.  I fear I’ve become that “high maintenance camper…”

But, it’s okay.  What’s better for my body is better for me!

What do you guys pack food-wise for your overnight adventures?

End of rant! I hope you guys are all having a wonderful week!

Yours,

Lisa

Endo Foundation Fundraiser Update!

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Sooooooo close to the goal for my Bloomin’ Uterus fundraising efforts for my March 2015 Endo Walk and the Endometriosis Foundation of America!  I wanna make this little thermometer EXPLODE!

If you’re interested in donating, or would like to purchase a Bloomin’ Uterus Endometriosis Awareness button, please click here for more info!  All donations and button sales go straight to the coffers of the Endometriosis Foundation of America. I don’t get a cent!

I’m SO excited! Never in my wildest dreams would I have thought this possible!  Creating the logo, purchasing the buttons, and making this happen has been such a wonderful experience! I’m so overwhelmed with gratitude! ❤

Together, we can fund a cure.

THANK YOU!!!

Yours,

Lisa