Progestin making you bloat?

One of the messages that I try to convey to my readers is that you MUST listen to your body. The other message – which is a mucher harder one to convey and certainly harder for my readers to follow through on – is to be your own advocate. Sometimes your physicians are not as educated about hormones and birth control options as they should be. But as a sufferer of endometriosis you know that birth control is the first line of defense for reducing period pain. In some cases, its used to abolish your period altogether so that by eliminating your cycle, you eliminate the pain that comes with it.

The first time I went on birth control was at the age of 14. Birth control in the late 90’s were not what they are today. I mean, for the most part it was just a bunch of hormone and a whole lotta side effects. I gained about 40 lbs and that is NOT the age you want to be feeling overweight. I stopped taking the pill out of self consciousness but eventually resumed the pill a year later simply because the pain was too unbearable. Nevertheless I have been on many forms of birth control for over 20 years. Some worked, others didnt, and sometimes they start out working but lose its efficacy over time.

After my second lap in March 2018 I was put on Visanne. Technically I was supposed to go on it before my surgery but I forgot (oops!). The idea with Visanne is that its a progestin-only oral pill, so the goal is to reduce the estrogen in your body and hence reduce the bleeding/pain and growth of endometrium (which is found in your uterus) and endometrial lesions (potentially outside of your uterine cavity). In addition, I was asked to take them continuously to abolish my cycle altogether. It didn’t work!!!! Not only did it NOT WORK but it made me feel bloated and gross and unattractive. Over the course of 6 months I was having constant endo-belly. I mean, everyday, all the time. I literally had to buy a whole new wardrobe to accommodate my wider midsection. Ladies this is not the way of life!! So I did what no patient should do… I stopped taking it and switched to the pack of old birth control pills I was taking (and loved!) before my surgery. I knew it was only a month before I was scheduled to see my new specialist so really, what could be the harm? Initially I think the results were psychosomatic but I instantly felt more human. Then, the physical symptoms followed. The bloating over the course of 1 month was dramatic. Well,.. at least it felt dramatic.

 

 

 

 

Once I was able to sit down with my new specialist (new because I moved across the country from Vancouver to Ottawa), we looked at the big picture. Not only was visanne not impacting my hormone cycle, but it was bloating me. Then you add in that I have ulcerative colitis and it paints a better picture of why my body may not be absorbing the pill format of the hormone. That’s when we brought in Mirena – a progestin-only IUD. Without going into details about the procedure or the discomfort, the fact of the matter is Mirena is doing what its supposed to do. Month over month my periods are lighter. I’ve heard it takes about 7-8 months before its completely unnoticeable but I’m not there yet. I still feel period cramping without the bleeding, but i’m only 4 months in. Moreover, the progestin in this format is isolated to my pelvic cavity which means it doesn’t have the opportunity to bind to progesterone receptors near or on my gut. I’ve had zero bloating (minus the occasional endo belly which I mitigate with my diet) for 3 months at least.

Remember. The goal is to listen to your body and challenge your doctor when you KNOW your quality of life is not optimal. Think outside the box. Read up on options and present them to your doctor. And above all, if you ever have any questions please message me. You can email me, or DM me on social media (@crampmystyleblog).

This is me today!

Endometriosis versus Erectile Dysfunction – the numbers are staggering

A lot of my posts are drafted for days while I gather stats, and mull over the most politically correct way to convey information without sounding too bias or uninformed. But every once in a while I get the motivation to write something off the cuff; something that comes from my innermost emotions and bubbles up into (what I think is) a profound piece.

This morning while making some eggs I put on a TedTalk for some daily mojo. This morning it happened to be Ashley Judd’s Ted Talk: How online abuse of women has spiraled out of control.  It is a very candid tale of women who are being called such names as C–T, Bitch, and other slanderous titles on social media, with the depictions of abuse and rape mixed in. It wasn’t the most uplifting topic per se, but her delivery was so empowering. It got me thinking about a topic I tend to gravitate to in my brain but so often have to mute my feelings on the topic depending on my audience. That topic is how women have to deal with periods and period pain, yet if this was a male dominant problem we would have found the solution centuries ago.

The reality is this. Refute me if you’d like but I’ll smash it with stats.

About 5% of men (0.5 in every 10) experience erectile dysfunction at the age of 40, and the percentages go up with age. This mere but loud 0.5 in ten men were blessed with a drug called Viagra which showed promise in the early 1990s and was launched by Pfizer in 1998. Thereafter three other comparable PDE5 inhibitor drugs have come on the market to assist with erectile dysfunction. These drugs, in varying degrees cause headaches, nausea, flushing and potentially some vision problems. These in my opinion are low concerning side effects and you’d be hard pressed to get a day off work for any of them alone, let alone together. A simple google search will show you that the erectile dysfunction treatment market was $7 Billion in 2017 and is estimated to hit $7 Billion in 2023. Sadly these are the numbers in which pharmaceutical companies, therapeutic companies and CROs are invested in. One person alone will take one oral pill half an hour before sex, and it is recommended that they should not take more than one a day. That doesn’t preclude them from taking a single pill EVERY DAY! If you add up how many pills a man might take in his lifetime, thats a hot commodity and a booming market. But it can come to a pharma company’s detriment if the price of such a drug can be prohibitive to repeat orders. Thus, drum roll please…. Pfizer now offers a generic brand for only $20 (as compared to $63 USD  for the name brand).

Ladies I cannot tell you how much this makes me mad.

Women in Canada alone, which is a fairly accurate representation of the world, suffer from a number of diseases which cause infertility. In 2009-2010 the prevalence of infertility in Canada was 15% (ladies, thats 1.5 in every 10 women) and I’m sure the numbers go up with age, although not reported. Fertility, of all the women-centric issues, gains a lot of attention from the vantage point that women are meant to be child rearing. And if we can’t accomplish the one thing we should be good at (or rather, if we are willing to spend money to rectify this issue) it creates a very expensive market for IVF and various other hormonal therapies.

But let’s take fertility off the table for a second. What if I don’t want to have children? What if I can’t have children and don’t want children? What if I want children but have decided its too much for my body? Likewise, what if I’m not ready to start having children yet?

 Around 80% of women experience period pain at some stage in their lifetime. You can suffer from period pain from your early teens right up to the menopause. Most women experience some discomfort during menstruation, especially on the first day. But in 5% to 10% of women the pain is severe enough to disrupt their life. If your mother suffered period pains, you are more likely to suffer too. In 40% of women, period pain is accompanied by premenstrual symptoms, such as bloating, tender breasts, a swollen stomach, lack of concentration, mood swings, clumsiness and tiredness. – women’s health concern

Woah ladies. Let’s back up a second here. So, 80% of women (8 in 10 women) experience period pain at some point in their lives, 5%-10% (0.5-1 in every 10 women) have pain severe enough to disrupt their lives and 40% (4 in 10 women) have period pain accompanied with a number of symptoms that should be worth taking a day off work. Yet if we take a look at medications to treat painful periods (dysmenorrhea), we have a plethora of birth control pills that alter our moods, our weight, our cycles and prohibit us from getting pregnant should we choose. Other stats have reported even higher percentages of dysmenorrhea up to 20%. twenty percent of women!! (2 in every 10 women) – thats 4 times the amount of erectile dysfunctions!!

Within those stats above, we know that certain diseases such as PCOS, Adenomyosis and Endometriosis can dramatically affect a woman’s life and certainly throw a curve ball in pregnancy. PCOS affects 6-10% of women in Canada (0.6-1 in every 10 women); Adenomyosis has no stats on prevalence because the number of misdiagnoses confound these results but the numbers are upwards of 14-44% of women; endometriosis affects 10% of women (1 in every 10 women). And while some of these women may be counted twice in these stats, the reality is there are no medications for adenomyosis and endometriosis; nothing to treat the pain, nothing to solve the root of the cause, and absolutely no cure.

Endometriosis comes with a tagline: It takes 20 years and 10 doctors to be diagnosed with endometriosis. 

Pardon me, what other disease comes with staggering stats attached to it like that?!? That’s insane.

For most women who suffer from pain and are not ready to conceive, the remedy is birth control as mentioned above. This is intended to help regulate the cycle and to reduce the symptoms, but as many writers have shown recently, the bleeding from birth control is not your period nor should it be deemed normal. Furthermore, if conception is not on the cards, surgery tends to be the gold standard for diagnosis and for treatment although NOTHING cures either of these diseases.

In 1985 a drug by the name of Lupron was released into the market for prostate cancer. Ladies… prostate cancer. We don’t have a prostate. The mechanism of action is to shut off the production of sex hormones and thus the drug was repurposed in 2001 for treatment of endometriosis. Again, similar but different than the birth control pill, the treatment is hormone based and is intended to shut down the hormones that seemingly have a play in exacerbating endometrial growths. While some women have found reprieve in this drug, many more have not. We always caution women to think about their own bodies and make informed decisions about their healthcare with their loved ones and their practitioner. If Lupron seems like the best drug for you, do it girl! The reality however, is that Lupron comes with a price; literally and figuratively. Unlike the blue pill our male counterparts can take to float their boat (if you will) with few side effects, our three injections (injections! not pills by the bedside) reportedly may cause…

these…

  • hot flashes, excessive sweats
  • gastrointestinal problems, nausea, vomiting
  • decreased libido
  • muscle or joint pain
  • weakness
  • breast tenderness/pain and/or vaginitis (infection or inflammation of the vagina)
  • emotional changes such as feeling depressed
  • headache/migraine
  • upset sleep
  • nervousness/rapid heart beat
  • edema (swelling, water retention)
  • weight gain or loss
  • skin reaction at the injection site such as itching, redness, burning, and/or swelling
  • acne
  • menstrual cramps (dysmenorrhea)

and these…

Side effects reported after the drug was available for sale
(postmarketing) include:
● convulsion
● liver problems, including serious liver injury
● serious allergic reaction (anaphylaxis and anaphylactoid)
● inflammation of the lung (interstitial lung disease)
● pituitary apoplexy; symptoms include sudden headache,
vomiting, visual changes, problem with eye muscle movement
(ophthalmoplegia), altered mental status, and sometimes
cardiovascular collapse

Ladies, holy fuck! convulsions? Liver problems? come on?!? hey if this is working for you and the side effects are minimal, power to you girl. But this is not acceptable and NO MAN WOULD ACCEPT THIS.  Lupron’s oral counterpart, Orilissa, seems to be gaining more traction by endo warriors and has way less side effects apparent. But the price tag on these medications is thousands of dollars with a full stop on how many we can have, and how long it will actually work.

The last time I went to see my doctor I had a Mirena IUD put in and this elicited all kinds of depression. I was depressed. My vagina was depressed. And forever will I feel like an android is living way up where no man has been before. Literally, I feel like the little android arms are hanging on to my cervix for dear life so not to plummet to its death through my birthing canal. It sucks, and everyone keeps telling me I’m going to love it. I am not even using it for birth control I’m using it to stop my periods and try to prevent the endo lesions on my diaphragm from poking a fucking hole in my lung. That’s a real thing! I was told it would take up to 9 months before the android would start to prove itself worthy and I was cautioned that the process would cause cramping and light bleeding. What I didn’t know was that I would have chunks of endometrial tissue excreted from my lining and out my vagina. I also had not appreciated that many women before me experienced this ’tissue issue’ with or without an IUD but with the common denominator being endo or adeno. I was not worried, I chalked it up as part of the game. Can you imagine a man being ok with chunks of tissue falling out of his dick? And thinking ‘well it’s all part of the game’ (*shrug*)??? Hell no! How did this become a new norm???

So we come full circle under the banner of what we as society have deemed acceptable for women and what men seem to take for granted. And somehow, both Ashley Judd and I focused on vaginas. I knew we were meant to be friends. LOL.

 

Listening to my body – part 2

It’s hard to tell whether I will lose some followers on this one, just because of how complicated this journey is getting. So I left off on part 1 telling you that my 1) entyvio infusions were being moved from 8 weeks to every 4 weeks 2) Im due to meet my Endo specialist and 3) I’ve taken the liberty of switching off of progestin-only Visanne (oral birth control) to a estrogen-progestin oral birth control called Minovral which seems to be keeping me on my cycle and has reduced my endo-belly.

Let’s start off with my endo visit exactly a week ago. For the sake of public scrutiny I will avoid mentioning names of my doctors. Let’s call my Endo specialist ‘Dr. E’ for now. Skipping ahead past the routine questions, Dr. E had a resident doctor come assess me first. To be fair, I took a cancelation endoscopy for an hour after this appointment so the doctors were rushing on my accord. The resident was interested in my birth control path, and agreed that putting myself on some form of birth control was the right idea, and certainly if Minovral had helped me in the past it was a good option. She also reiterated that I would use it to skip my periods as I had been, to reduce the ‘cycle’, and eliminate the bleeding which in turn should reduce new endometrial growth. This is key to the understanding of how the disease works. However, where we disagreed is her plan to attack the pain. She was comfortable assessing whether the birth control itself would reduce the pain and then we could address next steps in two weeks. My thinking was that birth control hadn’t worked in the past, Visanne certainly didn’t work, so going back to birth control as the line of defence was practically moving backwards. She called in Dr. E to help with the issue. I wasn’t being irate, I was being rational and she appreciated this. Meeting Dr. E was like meeting a celebrity. He has a fantastic reputation in the community and has overcome tremendous feats for women suffering from endometriosis that I was admittedly somewhat star struck when he walked into the room. Mom helped me gain my composure to address the pain question and this prompted him to get me to lie on the table and see where the pain is located.

Upon inspection I was able to show him that my lower left side, right around where my stitch for the ovarian suspension was, always hurts. Always. Every examination Ive had since my excision in March has resulted in me wincing in pain every time a doctor pokes in that general area. This was a red flag for Dr. E. He then asked me where my upper pain resided so I showed him the right side under my rib (which one could say is my right side of my diaphragm). Practically, this would align with the diaphragmatic endometrial lesions that were cauterize during my excision. Scientifically however, lesions on the diaphragm (so I learned) do not express pain on the diaphragm but refer pain to the right shoulder. This is where we paused for scientific clarity.

In Dr. E’s opinion, one should be pain free 6 months to a year after a thorough excision like the one I had. While the cauterizing did not effectively remove the endo on my diaphragm it should have – along with skipping my periods – significantly halted any growth or spreading of those implants. Dr. E also mentioned that doing surgery on a patient is usually refrained from IF the patient has NOT had this time frame (at minimum) of no pain, as it may point to other explanations of pain rather than it being a direct cause of the implants. Yikes. We agreed that we would order some scans to physically examine the state of the implants (for preparation of any future surgery) but that our primary goal (kind of what I was gunning for in the first place) was to address the pain.

Here is where my life turned upside down. Dr. E told me that there is a Neuroscientist who believes the body can learn to address pain in a constant fashion, even when the body doesn’t meet protection. For more information on this concept, Dr. Lorimer Moseley has created this fabulous video called “Tame the Beast”. (This link will open the video in a new window). Under this concept, Dr. E has administered a pain blocker to many women like myself who are feeling pain in an area that is perfectly healed and not in danger. With my eagerness, Dr. E’s Resident administered two long needles into my nerves associated with this over-firing of pain. It was such a weird feeling. Ugh! I was told that if it is the problem, I should get a rise in pain initially and then the pain should go away within 24 hours, for 4-6 weeks! Note that the pain did go up after the injections but only if I really pressed on the nerves. The pain went away 100% after the first 24 hours and I can happily report there has been no pain for ONE WHOLE WEEK!!!! With regards to the upper pain, the theory is this could also stem from the same problem but given its complex location I would need to be given a neuromodulator (similar overall function of the pain blocker). BUT we decided to hold off as this area is still under scrutiny by my GI.

Perfect Segway…

After this appointment to which I was numb from emotion, I quickly drove over to the hospital down the street for my endoscope. So, this was ordered by my GI (Lets call him Dr. G) to reexamine my pancreas and get to the bottom of this recurring acute pancreatitis. In some ways this would also help to rule out the theory of endometriosis on my pancreas but the rest was up in the air.

When I was about to be sedated the GI (Call him Dr C), asked me if the episodes of pancreatitis ever happened before I started on entyvio. The answer was no. He then told me that a recent publication (2018) showed 4 cases – two adult and two paediatric – of pancreatitis linked to Entyvio (Vedolizumab) and he suspects this may be the case with me. The endoscope was quick and dirty. When I started to come out of the fog, Dr, C waited behind to explain to me that the endoscope looked fine: no inflammation on my pancreas, no scarring, no signs of damage. This substantiated his theory that it could be from my medication and that if my infusion frequency has been moved to every 4 weeks this could exacerbate the pancreatitis. On this front, I have left it to Dr. C to let Dr. G know, and contact me for next steps. The challenge there will be having to take me off a medication that is working for my Colitis and figuring out which other medication will work.

Stay tuned for part 3.

Listening to my body – Part 1

With so many things happening to my body at once, I spend a great deal of time discerning between endometriosis pain, ulcerative colitis pain, anxiety, stress and just an off day. I run out of spoons a lot, and I am starting to look at my body with disdain – something I don’t even want to admit to myself. To put this all together Im starting to become unfamiliar with the body Im living in. Truth be told the last year has been one of the toughest emotional roller coasters of my life (even worse than that time my first husband cheated on me). But everything is coming to a head now…

Ulcerative Colitis

I have met with my GI. He has sat with me and taken all of my specifics down. He was wonderful. He listened to me talk about how my body feels over the course of 8 weeks between infusions and agrees with me that they should be moved to every 4 weeks. This should mitigate the symptoms that creep up around week 5. With the looming possible Primary Sclerosing Colingits (PSC) he wants to ensure we do a colonoscopy every year, with intermittent Calprotectin testing and blood work to stay on top of the whole system.

Pancreatitis

He also wants to get to the bottom of my pancreatitis. We talked about the possibility that this could be endometriosis infiltrating the pancreas. His explanation, which I agree is sound, hypothesizes that the endometrial lesions would have to infiltrate deep enough into the pancreas to cause a blockage or some physical inflammatory response for this to be the cause of my elevated (spike in) pancreatic enzymes. That being said he is willing to look into it, have me looked at by a pancreatic specialist and communicate with my endo specialist to have my body examined from different angles/groups of thought.

Endometriosis

Well, see the rest of my body wants to cooperate but my endometriosis is still a stubborn bitch. On Jan 10th I finally meet my endometriosis specialist and will hopefully get clarity on the chronic pain I have down below, the periods that are still happening despite the Visanne, and the diaphragmatic pain that’s a thorn in my side (figuratively and literally).

Leading up to the holidays my endo belly was killing me! I was almost at 3 weeks of the most uncomfortable endo belly. I mean, I went online and had to buy new pants that would allow for the extra circumference I just developed. And with no sight of this going away, I was getting super depressed. Nothing I tried helped. I thought at first it might be soy milk but I took that out of my diet. I am on gluten free, dairy free, sugar free meals so what the heck was causing this? I wasn’t doing anything out of the norm, and I could tell it wasn’t colon inflammation.

On Christmas Day my uterus decided it wanted to give me a full on period – the first one I’ve had in over 8 months. FML! I knew the Visanne wasn’t working as I was still having a ‘cycle’ without the bleeding. Now… this?? Screw Visanne, Im done. I decided to stop the visanne altogether as it wasn’t providing me any help whatsoever. Three days into the bleeding my period pain was way too debilitating and I had to put my thinking cap on. I wasn’t going to be seeing the specialist for another 2 weeks so think fast. I decided that since birth control is usually the first line of defence against period pain, I decided to pop one of my Minovral oral birth control pills. This way I was getting some sort of hormone into my body, despite it also having estrogen there.

My other line of thinking was that maybe visanne – or rather the lack of estrogen – was somehow behind this outrageous endo belly. This theory was based on nothing at all, other than listening to my body and knowing how it might be reacting to certain changes over time. In case my specialist thought this theory was crazy, I catalogued my belly over the course of a few weeks leading up to my appointment.

 

One day off Visanne
Two days off Visanne – no difference yet 😦
One week off Visanne – things are looking up!
Two weeks off Visanne. I feel human again!!!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

So now I wait…

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Leaning on your spoonie support system

Talking through endometriosis, ulcerative colitis, hysterectomies and more

Rachel Egan, I am so delighted to be interviewing you today as I think your story, while complicated, will resonate as a whole – or in parts – to a lot of people. To give people a background, I was admitted to the Vancouver General Hospital almost exactly a year ago with what I thought was the flu. 3 days in, the gastroenterologist dropped a bomb on me that I had severe ulcerative colitis and treatment would be discussed shortly, as well as pain management and next steps. In a flurry of emotions I reached out to the one health-related facebook group I was part of – the BC Endometriosis facebook group – and cried for help. “Does anyone here also have ulcerative colitis? I just got diagnosed and I need advice”. Rachel DM’ed me and introduced herself as having both diseases – endometriosis and ulcerative colitis. She calmly asked me what the doctors had told me already, which was that they would be putting me on asacol, prednisone and keeping me for a few more days to make sure the medication was a good fit. From there Rachel began telling me her story, provided me with the best perspective – a patient perspective – and became my voice when I was losing my own.

Rachel, thank you so much for allowing me to share your story with others. First off, many women with endometriosis are always curious how I was diagnosed with UC because we all share so many bowel symptoms. I think sharing your diagnosis would help others. Do you remember how you were diagnosed?

I’ve been sick most of my life.  I struggled with depression as a teen due to feeling sick and achy all the time.  I was stuck in a bad cycle of trying to get my doctor to take me seriously and it being told: “You’re an anxious person, of course you feel sick all the time.”  Fast forward to being a mom of a 3 year old toddler who needed surgery. The stress hit me like a tonne of bricks even though the doctor told me it’s usually harder on the mom than the child having the surgery.  The stress caused the colitis to flare up with continuous blood for a months. My GP at the time said, “Oops, I think we missed something”. I cried. FINALLY he admitted it wasn’t all in my head! It took 3 long months, but we finally figured out that it was UC.  I remember my first colonoscopy in its entirety. Prior to my scope, I researched what UC would look like on the camera. I remember watching the camera on a huge tv screen and right away saying, “Fuck…that’s not a healthy colon is it?”. Again the wave of relief that came over me.  Something had been wrong all those years! I finally had an answer!!

Its funny how we remember all the little details of a diagnosis because it’s so validating. Unlike myself you were diagnosed with Ulcerative colitis first. What medications did they put you on?

I was first put on mezavant and salofalk suppositories for 9 years; on and off entocort and prednisone the last few years.  Mezavant was working really well with no side effects but after a somewhat predicted flare from a surgery and the stress of quitting smoking, the doctors closely monitored me with the addition of Imuran and salofalk enima’s.

And what are you taking now for the UC?

I’m currently on 8 oral Salofalk pills, 3 oral imuran pill, with salofalk suppositories and enimas as needed. Thankfully I experience minimal side effects from all the drugs with the worst being nausea post imuran pill.  This was easily remedied with taking a dose at night and sleeping through the nausea.

And then all of a sudden you found out you had endometriosis. Do you remember how that went?

I had such extreme periods my whole life, and it had gotten to the point where I couldn’t even stand up straight without being in intense pain. My left ovary had shown a large cyst in a scan, and with me pushing for a hysterectomy (I was anemic due to blood loss from periods and UC), my gynecologist agreed that an exploratory surgery would be a good idea.  We had agreed that removal of my uterus would be a good idea to combat anemia and would try and keep both ovaries. Unfortunately my left ovary was mangled from the cyst and it had to be removed. I remember waking up from the surgery, hoping that a diagnosis of endometriosis was going to happen, hoping that it wasn’t all in my head again! I had such a huge wave of relief when my doctor spoke to me about the deposits she found and she tried her best detaching my bladder from my cervix!  Unfortunately she was only able to deal with what was at the belly button and down so we weren’t able to eliminate the pain above it.

One thing we talked about while I was still in the hospital was learning how to discern between the diaphragmatic endo pain and the colon pain. After a year I can probably describe the two but it’s still tough. What about you?

I was looking forward to a hysterectomy because maybe I would finally be able to tell the difference between the two diseases.  Some things I observed was that the endo and scar tissue created a bad ripping and tearing sensation in the abdomen, sharp lightning bolts and hot pains, and dull chronic pelvic floor pain. With endo you can feel tired but have some energy because you can still eat.  With UC, when it is bad, the body is weak and intestines are spazztic. The body just can’t absorb anything nutritional from food so one just becomes weaker. But what they share is ‘keel over below the belly button cramping’.

I know I find it hard not being able to take NSAIDS. The one thing that has always given me some relief from endo pain – especially the diaphragmatic pain – is Naproxen. But I can’t take it anymore because of the UC. What about you?

Pain relief is difficult for me as well. I cannot take NSAIDS either due to UC, and I have to limit acetaminophen because of the impact it has on my liver (due to being on imuran).  This leaves me in the world of narcotics, which really means I suck it up until i’m in tears. Fear of narcotic dependency always looms over my head so I avoid taking it at all costs.     

There are so many things we have to be careful of when dealing with both diseases. I was in so much pain post endo surgery #2 and was in the ER seeking relief. They were really hesitant to give me narcotics as i had previously been in that emerge numerous times for pain relief, so they gave me some sort of anti-inflammatory.  I reluctantly took it as I was desperate for relief. I ended up with what we thought was a bladder infection a few days later and needed antibiotics as well. That antibiotic is now on my allergy list because it caused such a bad reaction. The combination of NSAID’s and antibiotics put me into a full blown UC flare. My entire colon was inflamed.  It was horrible, and I was bedridden for months. I will never take a medication to ‘please’ a doctor ever again. I should trust my gut instinct and know that I know my body better than an ER doctor does.

Let’s talk about the hysterectomy for a second. More and more women of all ages are having hysterectomies as a therapy for endometriosis. My specialists have never mentioned this as an option, and it’s a big decision. How did you get there with your doctor?

I was anemic from the UC, and my periods were so painful and heavy (2-3 days of going through heavy flow tampons every 20-40min). I physically couldn’t handle a period anymore. I was so blessed to have a child, but my body was done and it was easy to rationalize with my gynecologist that it was in my best interest.  So this was part one of my hysterectomy, removal of the uterus and left ovary. Part two happened 2 years later after my local Gynecologist said he wasn’t skilled enough to do my surgery due to it’s impact on my bladder. I started going to BC women’s hospital where I was on Visanne for 1 year. This worked well for a year, and then gradually quit.  I was unable to stand up straight again, I had to use a scooter to do groceries. My quality of life was poor again so we decided to give Lupron a try before removing the last ovary. It was a horrible experience being on Lupron (still dealing with the side effects today), but it did show that my pain settled a bit with hormone suppression. This was enough to convince my surgeon that it was a good idea to remove it.   So surgery 2 happened. My right ovary was dug out from my abdominal wall (it took them awhile to find it) and they removed endometrial deposits from my pelvic floor and bladder, and all the way up to my diaphragm.

The past couple years I tried to immerse myself in yoga and meditation, but even gentle motions like yoga was causing tremendous amount of pain.  This may be because the excision surgery and massive UC flare put me on bedrest for a few months. The lack of mobility was the perfect storm for adhesions to form possibly fusing organs together again.  I’ve tried pelvic floor therapy, which did help with some of the lower pelvic floor pain, but the sharp stabbing/tearing pains remain.

It was so brave of you to have a hysterectomy at such a young age. Are you free of endometriosis now, or are you still haunted with pain and symptoms?

It’s a daily struggle for me.  I’ve recently had confirmation that UC is in remission!!  Yaaaay!! But i’m in a lot of pain from my bladder/kidneys/diaphragm.  The pain has taken me to the hospital a number of times. We first thought it was bladder infections and kidney stones. My cultures always come back negative, and scans show no stones.  Just crazy flank pain attacks with a huge loss of blood and protein. My family has helped me advocate for answers and we’ve been able to eliminate everything regarding the bladder and Ureters thanks to a recent hospital stay in a big city hospital .  

We’ve been able to eliminate endometriosis inside the bladder and ureters.  We are now waiting on a second consultation with a kidney specialist. The ideas swimming around right now as to what It could be are a rare kidney disorder, endometriosis on the outside of my bladder, ureters, kidneys, and large intestine or something called loin pain hematuria syndrome.   Currently the hardest part is not knowing what’s wrong. I’d like to know if what’s happening is going to destroy my kidneys, or if it’s just something that we’ll have to manage the pain for.

In the meantime, how do you cope with the endo pain?

Honestly, i’ve embraced the 80 year old Rachel and live life slowly and carefully.   I draw in help and support from my amazing family. I’m really blessed to be so close and have them fight the good fight alongside me.  I’ve had to swallow my ego, and learn that help has to come from lots of people and not just one. It really does take a village, and i’m super blessed to have the help and support to keep things slow and low for myself.    

What about the UC? How do you manage to keep it under control?

I take my medications as directed, adding the extras when I seem to start flaring.  I’ve been through a few GI dr’s due to them relocating, and my newest doctor and nurse were able to help me understand the importance of enimas.  If ¾ of your large intestine is flared, and you’re only slightly healing from oral medications, suppositories aren’t enough to reach the other 1/4 of your intestine. I was in a cycle of continuous flares due to only using oral and suppositories.  Enimas along with imuran were able to get things back on track. As icky as people find Enimas, USE them! They work!

One of the main reasons I keep reaching out to you is because when I am down, you always lift me up. I have not moved across the country and we still have never met in person but I depend on you. I don’t know how you stay so positive, and I will continue to love you for that. But if I could ask you to give one piece of advice to others out there with chronic illness, what would it be?

When times are hard, reach out to other and do things that make you feel good inside. Don’t save your energy for all the “have to’s”, use that energy for self care.  Visit friends and family, go for a walk or swim, and don’t give into the internal self critic of ‘you should be doing this or that instead’. Take every single person’s offering of help that comes your way.  One way that people help me if they don’t live close, is a simple text a few times a week, checking in to see how i’m doing is awesome. It gives me the opportunity to check in with myself and see if i’m struggling emotionally or not.   If you’re not strong enough to find the words to communicate with a dr, ask a friend or family member to join you on appointments. If your ‘helper’ knows what’s happening to you and your body, they can offer support and ideas to the dr or help you remember what you really wanted out of the appointment.  

There are very few people who truly understand what it’s like to go from dr to dr to dr and all of them struggling to find answers. I’m so grateful to have you, Anusha, in my life!  You help make it a less lonely place to be. You’re not only empathetic and understanding, but you can make a girl laugh when shit gets real scary!

Hopefully all my readers have found a little bit of clarity through this interview. Please leave us any questions or comments as both Rachel and I are here and eager to help others.

Periods and Poop

Why we need to listen to our bowel symptoms

So many young women have approached me about endometriosis – and its related symptoms – to help determine if they have the disease. Because of their age, the vast majority have been told by their doctors that it is likely they have endometriosis but it has not been confirmed through laparoscopy – the only way to confirm endometriosis today. In almost all cases, however, the number one symptom that is consistent with all these young women I have spoken to is increased diarrhea during menstruation.

Over 90% of women diagnosed with endometriosis actually present with GI symptoms as their initial symptoms. Bloating is the most common presenting symptom, and is typically reported by 83% of women with endometriosis” – Lagyndr.com

Not only is this so common, it is a leading factor in misdiagnosing these women with either IBS before the diagnosis of endometriosis has been made. But why is that? Why do we poop more during our periods? Why arent doctors being more diligent in finding the right cause?

OK lets start with ovulation…

Estrogen and progesterone – both naturally occurring hormones in the body – play a role in reproduction (aka sex hormones). Leading up to your period, during ovulation, estrogen is at its peak levels to stimulate the release of an egg. “From then on, oestrogen levels begin to fall. Meanwhile, after ovulation, progesterone does the opposite of oestrogen and continues to rise; this is in order to prepare your womb for the fertilisation of your egg.” – Emma Thornton.

Menstrualcyclegraph..fw

Progesterone can typically cause a bit of constipation but when levels of progesterone are depleted so quickly toward these last two weeks it can release its constipating effects and as result can stimulate some diarrhea (or rather, increased gut motility). While most women between the age of 18-40 are on birth control to help with the pain, the levels of these hormones are usually not as controlled in women with endometriosis and thus symptoms like cramping and diarrhea still break through.

Then you start bleeding…

It has been shown that cramping associated with menstruation is linked to prostaglandins – a hormone-like substance found in the tissue that are signaled to contract to facilitate the shedding of your lining (thus your period). Unfortunately, prostaglandins are found in basically any tissue that is able to contract (aka inflammation) and therefore when the body sends signals for them to contract, it most likely also results in contraction of your bowels. We all know cramping of your bowels is a sure way to stimulate some poop. Note that “Higher levels of prostaglandins are associated with more-severe menstrual cramps” and these higher levels are associated with a number of possible hormone-related issues such as Endometriosis. For those of us who have endometriosis on other parts of our bodies such as our thoracic cavity, we also notice cramping there too. Ouch!

Now lets talk about the gut…

In parallel we know that estrogen hormone receptors are found within the gut. There are several different interactions between estrogen and the gut that we are just beginning to understand, one of which may be the interaction of estrogen with estrogen-metabolizing bacteria residing in the gut which may promote certain side effects such as bloating. Gut microbiota shifts (lower lactobacilli concentrations and higher Gram negative
bacteria levels) have been demonstrated in a primate study of endometriosis, although the mechanisms linking these remain unclear.

We also know that medications such as the well known drug Lupron work by blocking Gonadotropin. “Gonadotropin releasing hormone agonist (GnRHa) stimulates the
production of follicle-stimulating hormone and luteinizing hormone thereby suppressing estrogen production making it a common treatment for the estrogen-driven disease, endometriosis.” If you are not familiar with Lupron and other drugs that work by this mechanism, they put you into chemical menopause which results in a laundry list of potential side effects. However we have seen that by this mechanism – by suppressing estrogen production – certain symptoms such as diarrhea may become tolerable.

Now you talk to your doctor and the conversation goes like this…

“I have painful periods and with it I get a lot of diarrhea” – the doctor glazes over the part about your painful periods and goes right to the diarrhea. First thing, lets get you a colonoscopy to see if there is any inflammation in your colon. Dr. Ken Sinervo from the Center for Endometriosis provides a wealth of knowledge about this very topic here. In a nutshell “As many as 8% of endometriosis patients with bowel symptoms may eventually be diagnosed with inflammatory bowel disease. IBD is usually characterized by abdominal pain, constipation, diarrhea, or alternating bouts of constipation and diarrhea as well as intestinal cramping.” You may be saying this sounds like you but your doctor said they didnt find anything. IBD is very distinct when looking through a camera. The gastroenterologist can see particular parts of your lining (Ulcerative Colitis) or throughout layers of your bowel (Crohn’s Disease) that are massively inflamed from physical ulcers formed therein. If the gastroenterologist doesnt see this they may order a fecal test called fecal calprotectin, which will test for inflammation specific to the gut through a biomarker that can be found in your stool. If both come back negative, and your doctor is thorough, they may choose to monitor any subsequent flare ups by ordering recurring calprotectin tests and measure the potential escalation in inflammation.

But my doctor gave me antidepressants and shooed me away…

If your doctor doesnt know how to look for the signs of endometriosis or doesnt feel the need to put you through a colonoscopy they may diagnose you with something called IBS. IBS is very similar to IBD but in lieu of physical lacerations in your colon you have a faulty gut-brain signal which means your brain is sending your gut these signals to poop. Accordingly to Dr. Sinervo:

Irritable Bowel Syndrome (IBS) is usually treated with dietary changes to avoid food triggers, and increasing dietary fiber. In some patients, stress can be a trigger. Avoiding stress or learning to deal more effectively with stress may help reduce the number of episodes. Exercise is beneficial for many patients. Medications are necessary for some patients. These may include anti-depressants, anti-spasmodics and other medications. In addition, medications that work better for patients with predominantly diarrhea or constipation are also available and have been shown to be beneficial for some, but not all patients.

Lets get technical for a second…

Both IBD and IBS, while they have different signature features, affect the gut. The goal then is to slow down the gut motility – the speed at which food moves through your gut – to try to reduce the number of bowel movements you have in a day. One hot topic at the moment is the gut microbiome. Many women with endometriosis experience something called ‘endobelly’. People with IBS or IBD have similar bloating without the catchy name. If a food diary is kept on hand most patients will identify certain trigger foods that will result in massive bloating. TMI Alert: this bloating is not something you can fart out, it needs to be dissipated over time. Why does this happen?

There is a community of bacteria that live in your gut – known as your gut microbiome. The bacteria have been around since birth, and each person has a unique microbiome based on their diet, their environment, their immune system and a wealth of other factors. The important thing is that you want to keep your gut microbiome healthy, meaning you want to keep particular strains of bacteria in higher quantity – the ones that have a protective nature – and you want to keep other bacteria like sugar-loving bacteria low in population. Antibiotics are a sure way of killing both the good and the bad bacteria, which is why so many of us in the medical community are really against shotgun approaches that render the host (thats you!) without any defense. Nonetheless, after your doctor has guided you on some diet changes such as low fiber and perhaps to stay away from dairy and red meat (other foods that cause bloating and inflammation) you might notice that your bloating is controlled and your diarrhea is not so bad. This is great! Lets not knock it, but it doesnt mean you dont have endometriosis. It just means you are killing off the bad bacteria in your gut – the ones that feed off dairy and sugar and in turn cause massive bloating. These bacteria – if fed properly – would emit gases that cause your bloating. Not convinced? Try taking some capsules of activated charcoal when you are really bloated. The charcoal absorbs any gaseous toxins and removes them through your poop (your poop will be black from the charcoal), and in turn will relieve the bloating caused by these gases.

But the pain is back (or never left)…

If the dietary changes are working for you, stay on them. Because even if you do have endometriosis you will eventually want to adhere to what’s known as the ‘endo diet’ or the ‘inflammatory diet’ which is similar to what you have been doing: no dairy, red meat, or gluten. For those of you with diagnosed IBD, you can follow along in my journey converting from a low residue diet (full of rice, bread and pasta) to one that is low in gluten. But what about the pain? All of a sudden you have to scream for someone to listen to you because, while it’s great that you are not pooping ten times a day anymore, the period pain is still unbearable!

Unfortunately at this time the only way to diagnose endometriosis is through a laparoscopic surgery where they will take a biopsy of the tissue and will remove any endometriosis that can be found while they are inside of you. In Canada and many other countries you need to have had 1 year of failed pregnancy to be referred to a fertility clinic where they then assess your eggs, fallopian tubes and other hormonal factors. Putting the pieces together they can make a case for surgery to make an official diagnosis. For women who are too young to be trying to have a baby, or choose not to have a baby, you will need to be referred to an endometriosis specialist who may or may not want to operate right away but instead help with pain management until it is too unbearable. I know I am painting a very sad picture right now but this is the reality. And to be honest I don’t know the process in other countries.

The first step in pain management is birth control. I know…, they suck! But the reality is that getting your hormones in check will certainly help with the pain. You may need to experiment with a few different types of birth control to see which one fits you best. If estradiol-progestin birth controls dont mitigate the pain, the next step might be to try medications that only contain progestin. Reducing the estrogen content in your body by removing the chemical mimic (estradiol) might help with the pain as well. In fact, along with the progestin-only birth control they may suggest getting rid of your cycle altogether by taking the pill continuously. The hope is that by eliminating any spikes in estrogen which would occur during your cycle this would completely stop menstruation and any side effects that come along with it.

Now it’s time for surgery… 

During the surgery you will be put under. The laparoscopic surgery makes three tiny holes in your abdomen and leaves very small scars. There is no telling where the doctors will find your endometriosis but the goal is to remove anything they can see. The point of me dragging this blog on for so long is because in a small percentage of women the endometriosis may be found on or around the bowel which may have contributed to the diarrhea in the first place. That contractile tissue we talked about earlier would have been contracting against your bowel which would have definitely produced some painful diarrhea.

When the endometrial tissue is gone all we can do is hope for the pain, cramping and pooping to be reduced and then we continue the journey from there. Part of the reality is having an official diagnosis which in some ways does bring a sigh of relief. Always looking at the positive 🙂

Please reach out if you have any questions!

The Reuleaux of my health

The meaning behind the logo

For the last 20 years I have been trying to better understand and ‘treat’ my endometriosis with surgeries, birth control pills and pain medications. In the latter years I started to get wiser about the effects of nutrition and thus started to explore dietary solutions to mitigate the symptoms associated with endometriosis, namely the inflammatory diet. 20 years later, I found out that I also have ulcerative colitis, a form of IBD (Inflammatory Bowel Disease) that was present for years without rearing its ugly head. The triggers expressed themselves as common symptoms associated with endometriosis (bloating, diarrhea, pain/discomfort) that lead most endo women to be (mis)diagnosed with IBS (Irritable Bowel Syndrome). All it took this time was one trigger – perhaps a glass of red wine – that flared the colitis so badly that it was enough to show up in stool workups and a colonoscopy. To understand how they diagnosed me for UC see my article here: Part 1 and Part 2

While endometriosis is not an autoimmune disease, there are a number of co-morbities, suggesting women with endometriosis may be more prone or susceptible to developing autoimmune diseases. Likewise, 25% of people with one autoimmune disease are likely to develop a second autoimmune disease. Part of that equation is genetics, some of it may be due to epigenetics (the lingering genetic effect from your ancestors), some of it of course may be environmental including the things we eat. Yet while there are billions of dollars going into understanding the mechanisms behind autoimmune diseases, there are not enough doctors who specialize in understanding the underlying causes of inflammation,… as a whole.

Up until recently my life was regaining momentum; with another endometrial excision surgery behind me in March of 2018 and rapid improvements through biologic treatment for my Ulcerative colitis. But then on July 1st 2018, I woke up knowing something was wrong. I had not eaten or drank anything funny the day before, I didnt overly exert myself, but my hormones were off, my spoons were run up, and I started to feel achy in my upper abdomen. Needless to say this pain went from a 1 to a 9 throughout the course of only a few hours and I ended up back at the hospital for what was the beginning of the journey into the investigation of my idiopathic pancreatitis. Note that I have not been definitively diagnosed with anything yet, but the doctors are puzzled as to whether they are seeing true pancreatitis, autoimmune pancreatitis, an abnormality somewhere along the upper digestive tract or if this is endometriosis on the pancreas (spreading from the known implants on my diaphragm). You can read about this journey in Part 1, Part 2 and Part 3.

What my life now comes down to is a Reuleaux triangle  – the middle part of a Venn diagram (the fatter, black outlined ‘triangle’) – where I can reduce my three diseases down to its commonalities and start to treat them together. For the first time in my life I can start thinking about the big picture and stop trying to interpret all the different nuances of each of the diseases. While each of them have their particulars (for example NSAIDS are great for endometriosis but increase ulcer bleeding in colitis patients) that need to be well understood, perhaps looking at whats causing inflammation for one disease could assist with reducing the inflammation associated with the others (aka a holistic view).

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My Reuleaux Triangle

The best (hidden) meaning for the logo though, is the perfect triangle in the middle of the reuleaux triangle – the Greek symbol for ‘change’. Honey, if there is one thing I am determined to do from this day forward, it is to change. Not my core being (I like who I am) but …

Change my mindset of how to look at these diseases.

Change my approach on how to combat these diseases.

Change the way I feel after a doctor tells me I’m insane or that I dont have any options.

Change the way I look at, and feel about, my body – the one I believed was flawed.

Change the way I carry myself.

Those are hereby here in writing so that if I forget my way, I can come back to remind myself.

Needless to say, through my journey of targeting my reuleaux triangle I hope I can continue to bring knowledge and experience to others who are diagnosed or looking for answers for undiagnosed autoimmune diseases and chronic illnesses.

What does my child have to do with this?

Why so many of us dont want to talk about Endometriosis

I really hesitated in writing this article for fear that there might be backlash. But I have discovered recently that the more I am honest with my posts, the more people are speaking out. So with the risk of making some of you angry, the trade off is to make more of you feel less alone.

When I finally reached out on social media I found that nobody – with the exception of a few powerful endosisters who have found their way – were not keen on commenting on posts or making themselves obvious sufferers of the disease. This corroborates the sentiment of several endometriosis R&D companies who say they feel lack of support from endometriosis patients as we dont stand up and fight for the cause. Instead, we as patients evidently become quite defensive about new drugs and gimmicky solutions that ‘may’ help our pain or furthermore, ‘cure’ our endometriosis. But it cant be because of periods. For Christ Sake the IBD community is VERY vocal and you cant get us to shut up about poop talk. What sets us apart?

When I was 14 I was loosely diagnosed with a disease called endometriosis – a disease which would cause ‘heavy and painful periods’. I was an anomaly as I later found out, because here are the lame stats that go along with the disease:

The average diagnosis takes about eight to 10 years. During that time, women typically go through seven to 10 doctors. Yet, endometriosis is quite common. An estimated one in 10 women have endometriosis. That’s an estimated 176 million women worldwide. – Danielle d’Entremont, CBC radio interview 

No other disease that I know of comes with a statistic of failure to diagnose, unheard cries for help, and years of life altering pain; permanent damage to the body and the ego. While I continued the journey of “heavy and painful periods” from my teens into my 20s, I came to realize why women dont like to speak out about this disease, despite the 1 in 10. In order to explain, I will use my own story.

I was 27 years old, married, with a house and two dogs – a good life. My husband at the time was a chef, and I was home alone most of the time. What I wanted more in life, unknowing of its challenges, was a baby. I wanted to be pregnant, I wanted to raise this child and I wanted what every woman was supposed to want – a family. We tried, and tried, … and tried. Looking back I should have bought pregnancy tests in bulk. Failed month after month made me skeptical of why this could be happening. We werent old, we didnt do drugs, we werent sick. I spoke with my family doctor who told me that it could be a number of things preventing me from getting pregnant but that the only way I could get proper care was to have 2 years of failed pregnancy as a trigger to refer me to a fertility doctor. I did what any woman would do – I lied. While it had only been shy of a year since we had started trying to get pregnant I told the doctor it had been well over two years. That was that, papers were signed and I waited to see the specialist. The first appointment with the fertility doctor was on my own (as most things were back then but thats a whole other story). We looked at blood work, habits, body weight, etc. The second visit was with my husband, then a follow up to let him know his swimmers were in good condition. He was off the hook. Which meant more focus on me. An internal untrasound revealed that I had very low egg count, and one blocked Fallopian tube. If any of you haven’t had the ‘champagne’ before, its a procure where they stick a needle along the inside of your Fallopian tube and push through it a bubbly fluid that should leak through the other end if the tube is functioning. Mine… was blocked. How do they unblock it you ask? They push the fluid through at a higher rate and hope it dislodges whatever the f%&k is blocking it. I cried like a child! Despite this quick fix, months went by without getting pregnant and the doctor finally pulled the trigger on doing a laporascopic surgery to determine and remove the endometriosis. In this case they book the OR for 1 full hour so that if any endometrial tissue is there, they remove it at the same time since they are already inside me. When I woke up from surgery the doctor told me I had stage 2 endometriosis and that he removed tissue from my ovaries but he didnt feel comfortable removing the tissue from my bladder. Note, the surgery was an excision surgery, not an ablation which didnt exist at the time.

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In the months leading up to the surgery, I will admit to the public for the first time ever, I had left my husband and knew I wasnt trying to get pregnant anymore but decided to go ahead with the surgery in silence in hopes it would give me a few years of pain-free life. During my consult with the surgeon I asked him what was to follow. He said the surgery would give me a 3 month window to get pregnant and then it would all start growing back again. I delicately asked if he would continue to care for me even if I gave up on trying to conceive, and his answer was,… No. In his practice, the only concern was conception; not endometriosis management. I went along in silence for 5 more years, with steady pain, hoping that was the last of my endo, until I couldnt anymore. The endo came back last Summer with full force and I cried with mercy to thousands of women who would listen to my story online. I needed to find an answer to a fairly aggressive endometriosis growth rate (bladder, colon, ribs and diaphragm) from those who had been through the snakes and ladders of various drugs and surgeries.

Over the last year I have shared my story and I have met some of the most wonderful women who suffer (and have suffered) in silence either 1) over their infertility or 2) their struggle to get a diagnosis because they have no desire to get pregnant. In both cases, women feel ashamed of their bodies, their lives, their inability to DO or WANT the one thing we as women are supposed to do – bear children. On one hand we fear the shame of telling our families and friends that our bodies are too sick to bear children. On the other hand, we feel scared and threatened that we will be judged for not wanting to provide a life to this world. In both cases, we lose. And when there is a loss, it is too hard to talk about it. This is why, we women with endometriosis (PCOS, adenomyosis and several other women-only diseases) suffer together – in silence.

There is no treatment, there is no cure, there is no screening method and there are very few specialists who know how to treat us. My goal, as a writer and an endowarrior, is to help bring awareness to the disease so that women who have daily pain and anguish can soon be recognised as strong, courageous, and fearless.

Dont tell me what to do

Working on you, when you are ready

I refuse to be called a millennial and in the grand scheme of things I dont think Im that stubborn. But I have noticed a trend in my life: that I can only do things when I am ready. For instance, when I was 12 years old my father brought home a copy of The Wealthy Barber. To this day this book continues to be recognized for its illustrated wisdom of teaching thousands of people how to save and invest their money. Dad had just started to learn about this at a greater scale and thought it would be fun to teach me how to grow my money at a young age. Surely if I had listened and followed back then I would be fairly wealthy. But it was the LAST thing on earth I wanted to be learning or practicing. We continue to laugh about this today as Dad makes every attempt to teach my younger cousins and now my nephew – any last ditched effort to get the young ones to invest. At the age of 35 I would commend myself for how money smart I am, but only because NOW I have an interest.

Over the last month I have been in a dark place. My diaphragmatic endo took over my life, putting me into the hospital three times in one month. I have been nothing shy of spoiled with love by my social media family as well as my real family and friends. Each one has taken a vested interest in finding me comfort but up til now, I wasnt really ready to think about how to reset my life. I was more focused on being angry. I have slept more in the last month than I did in my teenage years. My boyfriend and my mother have taken turns flying across the country to take care of me. And while little victories (healthy blood work, no diagnosis of something fatal, etc) make them exceedingly happy all I can think about is the pain and how angry it is making me. One afternoon mom suggested – after reading some rather basic endometriosis blog articles – that I should incorporate deep breathing exercises into my daily routine. What did I do? I tore her a new one. “I dont need you to read blogs I already read 20 years ago, telling me to do things I already know. I need you to find me a specialist”. She knew I was angry. She rested my head in her lap and let me cry and cry and cry. I knew yelling at her wasnt fair. And while everything she said was correct, I wasnt ready.

The remedy for my sanity was to fly back home for a while. I live in Vancouver but Ottawa is where my soul is. I had a flight booked already, so nothing in the world was going to stop me from getting on that plane. For two weeks, while I was at home I took some much needed time to listen to my body, listen to my surroundings, and start to take in cues. The first thing I did was breathe. Yes, exactly what mom had told me to do, but this time I was ready. Lets be honest, breathing doesnt really help when you have diaphragmatic endo because it hurts like hell. So instead, I do breathing exercises  1) to understand my limitations and 2) to build the muscles around my diaphragm SO THAT if and when I get a collapsed lung I will be in the best shape that I can be. Its not much, and again, it doesnt create miracles, but its something. On the daily I try to do 5 long, deep breathes, roughly twice a day.

In addition to my deep breathing, I am also finally ready to make some other positive changes.

  1. Eating greener – Note that with my Ulcerative Colitis I started out on a low residue diet for nearly 4 months and then started to bring in root veggies which are healthy and low in fiber. I maintained this diet for another 4 months which has brought me to a very stable state (ie no sign of inflammation or irritation in my colon alongside Entyvio infusions). My body is finally ready to take the next step. On the advice of a social media friend I am slowly starting to bring healthier food back into my diet. She provided me with a suggestion to start with a handful of leafy greens per day, and wait a full 24 hours to see if it sits well. Mission accomplished! Now I am incorporating a handful of leafy greens into every meal. Once I am confident that this will not cause I flare, I am going to start replacing some rice with Bulgar, and then start to slowing bring in new veggies; keeping a diary along the way.
  2. Being liable (Myfitnesspal) – Ok so I am horrible for apps. I utterly detest the apps that require me to input my meals simply because they need the data, and I get nothing in return other than some simple graphs. But I also admit I have never understood calories except for the brief year in highschool when I was gaining weight from the pill and decided to starve myself. That was a good lesson on how not to obtain calories. But in all seriousness while I am trying to reduce pain, stay healthy and be whoever it is I am supposed to be, I am basing it on no metrics whatsoever. I decided to download myfitness pal. Yup, I definitely have to input my meals but it tells me when I am eating something good or bad, it gives me goals to achieve and shows me how much impact a little walk can make. If nothing else, it is making me very aware.
  3. Forgiving –  I am learning to forgive people for telling me how they think I should live my life. I am forgiving people for not taking me seriously before. I am forgiving the world for giving me two autoimmune diseases. I am forgiving my body for being flawed. I am forgiving my soul for taking times to cry. I am forgiving my dog for passing away when I needed her the most. I am forgiving my colon for being sensitive. I am forgiving my body for being too strong; and at times for being too weak. I am forgiving people who love me the wrong way. I am forgiving the medical industry for not pouring more money into endometriosis research. I am forgiving healthier people for thinking there is a diet that will cure ulcerative colitis. I am forgiving.

My new sistas!

The Support Network of Spoonies

It has been 23 days of constant (chronic pain) and sadly I dont see a light at the end of the tunnel yet. I am trying my very best to live, and breathe and be positive but some days are better than others. To say the least I have been spoiled by my friends and family and I admit they have seen some of the best and worst of me lately.

Two days ago my mother kept coming into my room (she flew across the country to take care of me) to show me new blogs she has come across reporting on ‘ways to cope with endo’. We still think its thoracic endometriosis so she has gone full fledged google monster. While I should have been thinking ‘wow look at her taking an interest finally’, my brain went straight to anger mode. I said to her ‘these are things I have known for 20 years. Find me a doctor who can remove this from me, thats how you can help’. Yeah I literally said those things. I love her to death and dont know what I would do without her but sometimes – especially in these moments of frustration and exhaustion – I get mad at the band wagon jumpers who assume I havent googled everything from here to Mars.

Needless to say while I did apologise, Ive found that the best way to keep me positive is by reaching out to the community of spoonies that just ‘get me’. I recently, before experiencing this marathon pain, rebranded myself and started reaching out to others who have both colitis and endometriosis. In such a short period of time I have made friends over instagram and twitter, along with a fantastic support system on several facebook groups.

My way of helping you, while thanking them, is to introduce you to some of my new friends.

Meet Erin, aka The Herbivore Kitchen. She is a local to me – right here in Vancouver, BC. I started following Erin on instagram and fell in love with her meal ideas. When I found out she was local, we quickly started chatting over email and hopefully will meet in person one of these days. She has inspiring endo-friendly meals but has given me inspiring words through her email hugs.

Meet @mycolonaintcute on Intagram; A Welsh Londoner who has held my hand through some big ups and downs lately just by being there for me. Her meal ideas are fantastic for both flare and non-flare times. And most of all she has a great sense of humour.

Meet @lowfodmapchatherine who is a recent friend but is helping me – with her words and her delicious low fodmap menu ideas, how to turn my colitis diet into a healthy one. Check out her instagram when you get a chance.

Meet The Heatpad Queen, a beautiful soul showing the most gruellingly honest parts of having endometriosis and other autoimmune diseases. She has created a wonderful network on instagram and through her blog.

Meet @one_spoon_at_a_time_ another beautiful soul on Instagram who is battling motherhood with Crohn’s Disease. Beware her pictures are absolutely stunning. And best of all she’s another local here to BC.

Meet @mygreencolitis who has been capturing her own going green pictorial journal as a way keep motivated. Meanwhile she has been holding my hand, both in the journey of eating well with colitis, but in finding my way. If you are a UC patient looking to go green, this Instagram will totally motivate you.

I thank all of you for being a part of this journey from far and wide.