Living With Endometriosis

1 Year Anniversary of "Living with Endo"

2009-08-20T00:53:00.000-07:00

August 16th was my 1 year anniversary of starting this blog, amazing how the time flies. Here is to a painless and surgery-free year for all my endo readers out there. Love ya lots! <3

Endo News Updates

2009-08-20T00:33:00.000-07:00

Again... long time. I am sorry. Life has been busy, I have been out of town, working, playing and my big brother got married, what can I say?

Quite a few interesting and new developments have come about recently regarding endo research. Proellex, a "promising" new selective progesterone receptor modulator (SPRM) was undergoing phase II clinical trials for the treatment of endo and fibroids.

http://finance.yahoo.com/news/Repros-Therapeutics-Inc-bw-1930651958.html?x=0&.v=1

The trials were voluntarily suspended due to liver toxicity concerns of trial patients. I wonder when doctors are going to stop trying to mask the symptoms and start actually researching, finding a cause and then find a way to address the cause. You can throw all the cheese you want onto broccoli, but you still have broccoli, it is just covered with cheese. Yes, bad analogy, I know but it is true. BTW, I don't have anything against broccoli. It just is late and I had no other analogy ideas that sort of made sense.

In the UK news today, evidently an endometrial biopsy will detect the presence of nerve fibers specific to having endo.

http://www.dailymail.co.uk/health/article-1207541/Rapid-test-diagnose-common-womb-condition-endometriosis.html

Evidently it is almost 100% accurate (sounds too good to be true, also note that this is based on one small study with only 99 women). If it does prove to be accurate, this could be a great thing for women, an easy way to detect endo, hopefully preventing years of undiagnosed suffering and unnecessary surgeries. I am also a part of the Juneau Biosciences study which is looking for an endo gene to diagnose endo in the future using a very simple blood or saliva test.

How fucking easy would it be to be diagnosed by spitting in a tube? So much better than surgery, just for a diagnosis.

Obviously, surgery still will have a massive role in treating endo, as an immaculate excision removing all visible endo lesions along with a wide margin around the lesions is by far the best and longest lasting treatment option we have. We will still need all out laps, just not for the initial diagnosis.

Endometriosis Raises Risk of Preterm Birth By 1/3.

2009-07-01T14:54:00.000-07:00

It seems that not only are we high risk of having infertility, but we are also at a high risk of having our babies prematurely. A recent Swedish study shows that pregnant women with endometriosis have a one third higher risk of preterm birth of their babies than women without the disease.

http://www.telegraph.co.uk/health/healthnews/5709993/Women-with-common-womb-condition-at-risk-of-having-premature-birth.html

Women with endo are also more likely to suffer other complications of pregnancy and are should be treated as a high risk patient. This is not to say that women with endo cannot have healthy normal pregnancies and babies, just to make sure you and your baby are receiving the best possible care and treatment.

Happy Canada Day to all!

New Study Showing Quercetin Reduces Size of Endometriosis Lesions

2009-06-14T16:12:00.001-07:00

OK, I know. I have been neglecting this blog a bit lately, but I have been super busy with life. Quercetin is a flavanoid found in apples, red onion and both green and black tea. Apart from its many functions as a natural antihistamine, immune modulator, anti-inflammatory (cox-2 inhibitor), LDL cholesterol reducer, chemoproctectant among other things, it has recently been shown to help significantly shrink endometriosis lesions in rats:

http://www.ncbi.nlm.nih.gov/pubmed/19462895?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

This is such an amazing discovery in safely treating endometriosis symptoms! Yes, Lupron, Danazol, and continuous birth control pills can be effective for some people in managing the pain, but they do have significant side effects and negatively impact the estrogen dominanance situation. Given the choice of Lupron which produces a temporary menopausal state and can cause bone loss or Danazol which can have permanent masculinizing side effects or quercetin to reduce the size (and with quercetin also reducing inflammation and cancer risk), I will take the quercetin!

This is such a great discovery both for palliative endometriosis care but also for the nutrition/naturopathic medical communities, proving safe natural alternatives can be just as effective if not more effective than drugs. Keep up the great work!

Long Overdue Update

2009-05-07T16:02:00.000-07:00

Another big delay in updating, I am sorry :( I know. Recovery over the last month has been slow going to say the least. I have been incredibly fatigued and not sleeping well at all. For example I have slept about 8 hours in the past week. Yikes! I have also been having sharp shooting pelvic pains in the morning from about 5am-8am. Yesterday I suddenly had severe cramps for no apparent reason and nearly passed out at a gas station. Yes, the last 6 weeks have been pretty hard on me. I try not to complain and just get on with it, but it is hard. I certainly wasn't expecting to be needing to take Percocet 6 weeks or so post op or prescription sleeping pills just to get a few hours of sleep.

I saw my endo specialist last week, and she said it is normal to experience a lot of fatigue and shooting pains or a while after such a big surgery. She said to keep taking it easy and allow myself to heal. Pushing myself too hard will just slow healing down and will do more harm than good. The biopsies all ended up being endo, which was no surprise.

I have also enrolled in a genetic endometriosis study. All it involves is a phone interview, your operative and biopsy reports and a saliva sample. If you have been surgically diagnosed with endometriosis, check out this link: http://www.endtoendo.com/End_to_Endo/Endometriosis_Research_Study_End_to_Endometriosis.html
You never know, a little of your spit might go a long way in helping medicine treat endo more effectively, or better yet cure it! I have also been ruthlessly editing the wiki article on endo, lol and raising some very interesting points about Sampson's theory and general medical attitudes of doctors in the forums at www.obgyn.net. Another study I found of interest found biopsy confirmed endo in 4/36 female fetuses at necropsy. http://www.ncbi.nlm.nih.gov/pubmed/19358700?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

I have been on a bit of an endo awareness/accuracy kick lately. I go through my spurts of generalized frustration and disgust on how little doctors know about endo even though the information is there, and how ALL the MANY MANY myths continue to circulate.

Many pain free days! xox

Surgery and More

2009-03-29T21:34:00.000-07:00

I am sorry I haven't updated yet after my surgery. Much has happened :)

Surgery went well. It was longer and more involved then initially expected. Dr. W. did a deep excision of endo under the right uterosacral ligament (2 places), the posterior cul-de-sac, and the endometrioma in the right abdominal wall. The endometrioma actually went through to the peritoneum, and she could see a collection of old "chocolate" material with the laparoscope. Because the lesion was so deep, I ended up needing a mini laparotomy, not a simple excision. Surgery was supposed to take an hour and a half, and ended up taking nearly 3 hours.

I woke up and felt OK, just very tired and very stoned. I did not get sick :D (a BIG thank you to my anaesthetist. I didn't get to see her after surgery, but she was great! Know you are VERY appreciated!) I didn't stay in the PACU very long, I then went to my room. The first few hours are a bit of a blur. I might have been sleeping, but I might have just had my eyes closed, I don't know. I remember looking at the clock every 10-20 minutes or so. I also really had to pee, but I couldn't because I was way too dizzy when I tried to sit up on my own.

Eventually I was able to get up, and I also go my cell phone (dangerous). Evidently the guy in the room next to me couldn't feel his penis. And, I, in my highly medicated state thought it was the funniest thing ever and decided to text most of the people in my phone about it. At 2 am. Again, guys, I am sorry...

I couldn't sleep, so I ended up talking nutrition with the night nurse for quite a while. Damn, those heparin shots hurt. I still have bruises. I am really tired and this is starting to get random. I will continue in the morning if I am not so exhausted and sore.
xox

Surgery Today

2009-03-16T09:32:00.001-07:00

Today is the big day. I can't believe it is here. I go into the hospital at 12:15, and surgery will be at about 2:15 this afternoon. Even though I know everything will be OK, I am still really freaked out, again the emetophobia thing. I am also not too thrilled about having to have the surgery as an inpatient, but at least it is only one night and my doctor has requested a private room for the emetophobia to help minimize anxiety.

I think I just need to breathe, and try to relax, because I am just a little bundle of anxiety right now. I sure hope they give me some Valium once I arrive at the hospital to try and alleviate the knots in my stomach, shakiness, dizziness, difficulty breathing and the racing heart.

Any positive vibes anyone wants to send my way will be greatly appreciated!! I will update on how the surgery went and how recovery is going as soon as I am able.

Surgery Tomorrow

2009-03-15T14:29:00.000-07:00

OK, I am really starting to freak out a bit now. My surgery is tomorrow and feeling very very real. I have to be at the hospital at 12:15 and surgery is at 2:15 for an estimated hour and a half-two hours, and then discharged home on Tuesday if everything goes as planned. I know it will all be OK, but I am still nervous as hell, mainly again with the emetophobia issue. I don't care that they are cutting me open, I just don't want to get sick. I would rather die on the table to be honest, no joke.

I am presently on a clear fluid diet and drinking 2 pouches of Pico-Salax to prep for the surgery. It is so yucky with even yuckier effects. Not so pleasant. I am just tired and stressed out and rambling, don't mind me. I am trying to relax and breathe and minimize my anxiety, but it is hard. I am the type of person who analyzes things to death, so trying shut my brain off and relax is a very foreign concept.

Surgery on Monday and Emetophobia

2009-03-12T22:17:00.000-07:00

Wow, am I ever starting to freak out. Surgery is on Monday, and the nerves are kicking in, in full force. I honestly don't care that they are cutting me open, I am just such a severe emetophobe that I am terrified of getting sick. It puts me into full panic attacks.

I went in for an anaesthesia consult at the hospital on Monday, and the poor anaesthesia resident. He was so nice and helpful, and I kept grilling the poor guy about anti nauseants and less emetogenic anaesthesia and techniques, aggressive re-hydration via IV etc. This guy probably thinks I am a total nutcase, but I honestly would rather die on the table then feel a hint of nausea or God forbid get sick. I think I need some Valium...

Yellow Shirt Day 2009

2009-03-01T12:32:00.000-08:00

Tomorrow, Monday March 2 2009 is Yellow Shirt Day 2009. What is Yellow Shirt Day? It is an international effort to draw awareness about endo, give accurate information to the public and medical community, show support for your loved ones who suffer from the disease and to find a cure. It is absolutely unacceptable that the average woman with endo suffers for 9 YEARS before an accurate diagnosis is made. For a disease that affects an estimated 5-10% of cycling women, even 9 weeks is an unacceptable diagnosis delay. It shouldn't be that hard.
My other biggest peeve is that about 98% of gyns have absolutely no idea how to treat endo. They laser or cauterize the few lesions they can recognize and balk at you and prescribe even more hormones when you are back in pain 1 month later because they didn't remove all of the disease.

***To all the doctors out there and all current and future endo patients: Endometriosis can only be diagnosed with an EXCISION and a BIOPSY of the disease. Laser and cautery do not allow for biopsy, nor do they destroy the entire lesion, just the surface which leaves the "roots" in tact. Hence the disease is not treated. Lupron and Danazol are clearly not the answer. Sampson's theory is the biggest load of bullshit I have ever heard. Hysterectomy and pregnancy are not cures nor viable "treatments". Cramps and menstrual pain are not normal. They are common, but so is type II diabetes. Common and normal are two very different things. If you know something is wrong and doctors keep brushing you off, don't give up! There are endo specialists out there who can help you without injecting you with scary hormones or pressuring you into a hysterectomy that you don't need and won't help. Don't give up!***

OK, I am done ranting for now. I have a bit of passion on the subject :)
I am wearing yellow tomorrow. The question is, are you?

My Supplement Protocol

2009-02-24T16:44:00.000-08:00

I have mentioned before that I take quite a few nutritional supplements in addition to diet changes to support my endo and personal health concerns, and have recently added a few with the help of the ND.
Here is what I take everyday. It seems like a lot, but I believe that nutrition and supplementation is why I went from 18 months to 4.5 years between laparoscopies.

*This is what works for me, it may or may not work for you, this is not intended to cure, treat or prevent endometriosis in any person. I claim no responsibility whatsoever for your personal health, choices and/or actions in relation to this blog and my personal story and the therapies I choose to use. Consult your doctor and a naturopathic doctor or nutritionist before starting any nutritional or supplementation program. By reading this blog, you release all liability from the author, www.blogger.com and affiliates, and any and all products or doctors mentioned. *

My personal routine:

B complex 50mg 2x a day
CLA 1000mg 3x a day
Prenatal vitamin, 1/2 with breakfast, 1/2 with dinner (taking the whole thing at once makes me nauseated)
Organic cold pressed flax oil, 2000mg 3x a day
Organic cold pressed evening primrose oil 1500mg 3x a day
Calcium and Magnesium 400mg 1x day
Vegetarian digestive enzyme 1 before every meal
High quality probiotic 3 capsules in the morning
Estrosense 2 tablets 2x a day
Chlorella 3 tablets 2x a day
Traumeel oral drops, 15 drops 3x a day in water
Tissue salts Comb N, up to 6 tablets daily, as needed
Red raspberry leaf tea, especially during the luteal phase and menstrually.

In terms of nutrition, I do quite a bit there as well. I am a vegetarian, and try to have as much organic food as possible. I avoid wheat, sugar, alcohol, trans fatty acids, rancid or heated poly unsaturated fats and try to keep dairy and soy intake to a minimum. I make sure to eat lots of fresh fruits and vegetables, and at least dark leafy green vegetable a day. I use organic, first cold pressing oils, and store them in dark glass bottles away from heat and light. Organic raw nuts and seeds or avocado should also be consumed daily in moderation. Only whole grains should be consumed, whole sprouted naturally leavened breads are the best choice if you must have bread. Otherwise stick with brown rice, quinoa, spelt, kamut, oats, barley and rye. Avoid wheat and all processed flours and yeasts. If you must eat meat, make sure it is in moderation and organic, free range and cage free. make sure the animals are eating their natural foods, not a commercial grain feed or "livestock feed". Legumes, nuts, seeds, chlorella, and small amounts of soy or dairy can be combined with whole grains and produce for complete proteins.

Only 3 weeks left to go until surgery...

Happy Birthday to Me

2009-02-13T20:52:00.001-08:00

Yes, it finally came, the day I have been dreading... my birthday. I feel so old, it is disgusting. I am 26 and looking into everything anti aging that I can. I am seriously thinking about Resty or Juvederm injections in my lips, in addition to the additional work previously mentioned.

I am not looking forward to V-Day tomorrow, or SAD, singles awareness day. I have never had a good V-day, I always seem to be single when my birthday and V-day roll around. I wish it were easier to meet great cute funny smart passionate affluent successful sweet straight guys here. I like my space but at the same time I would like to finally meet the right guy and settle down.

In terms on endo pain, I did have some shooting and cramping pain today. I think I must have ovulated, because it was just on my left side and didn't hurt like my endo normally does. So I took some pain meds and curled up with my heating pad for a bit. I am sorry, I seem to be whiny and annoying again today.

*Takes a step back to gain some perspective*

Allergies, Allergies

2009-02-12T02:42:00.000-08:00

I decided to get ELISA allergy testing done, as a way to naturally help myself and reduce inflammation. Women with endo very often have undiagnosed food allergies, sensitivities, and candida imbalances. I got the blood work about a week and a half ago, the day before I got sick, and received the results back today. Wow I am allergic to EVERYTHING, gluten and yeast being the biggest two, although allergic to many other things including apples, blueberries, milk, mushrooms, olives (and oil), tomato, cocoa, black pepper, lettuce and pineapple among other things :/

WTF, I can't even eat lettuce anymore? It is a sad, sad day.

So I am planning on eliminating my allergies ASAP, so I will update as my with drawls go on. I am a nutritionist, so I do eat very healthy and follow the "endo diet" as it is, and am a vegetarian. So I am just going to have to be creative and come up with a plan. Tomorrow is my birthday (I am having a mid 20's crisis), however, so I will probably eat pasta and a mini gourmet cupcake, but apart from that planned cheat, I do plan on sticking to the new allergy protocol. Ice cubes and air it is. *Sigh*

Acupuncture Denied

2009-02-07T17:29:00.000-08:00

Yesterday I went in for acupuncture, but the yummy ND took one look at me and said no way. He was worried that because I have been so sick and hadn't eaten in a week that I would pass out on him. So I had a vitamin shot instead, which seems to be working because I am starting to feel better today. Ugh, it has been a week of hell, I seriously can't remember being so sick. My mouth really hurts today, it feels like it has been burned, which is strange because I haven't had anything hot since before I got sick. Whine whine whine... yeah... I'll shut up now and get back on topic next time.

Starting Naturopathic Treatment

2009-02-05T18:12:00.000-08:00

It has been a busy few weeks, so updating just hasn't happened lately. I decided to start naturopathic treatment, and am seeing a wonderful ND in the city. She has me on a few meds until surgery, along with acupuncture and B shots until surgery, then a more aggressive treatment afterwards. I don't want to suppress the disease at this point, because I want Dr. W to be able to remove all the disease possible next month (I can't believe it is only a little over a month away!) I go in for another acupuncture treatment tomorrow with an incredibly yummy ND. Who cares about all the needles when you can look at him?

I have also been crazy sick with strep throat this week. I haven't been this sick with strep for as long as I can remember, even when I was hospitalized with strep as a kid it wasn't this bad. I think it was the nausea, which doesn't normally happen to me with strep. 2 nights on the bathroom floor *shudders*. But I do seem to be getting better now that I have started antibiotics. I am also freaking out a bit because it is my 26th birthday next week. Eep! 26? When the fuck did that happen?

Lap #3 March 16, 2009

2009-01-13T23:11:00.001-08:00

I had my appointment with my endo specialist yesterday, and have officially booked lap #3 and excision of rectus abdominis lesion for March 16, 2009. The bad news is that I will end up staying over night at the hospital as well, so I plan on shelling out the extra cash to get a private room (vs the standard 4/room- yikes!) I don't think I could handle being with 3 other strangers recovering from their surgeries. I would be an anxiety nightmare, unless they doped me up with a lot of Valium, but I would rather not. She also recommends 2 weeks off work and life to recover, and 8 weeks before resuming all normal activities.

So at this point, it is just a waiting game until surgery. Hopefully the next 2 months will go by fast and the recovery even faster. Even though I have done this twice before, I still get nervous, so I hope everything goes easily and quickly.

Happy New Year! And Update

2009-01-08T14:05:00.000-08:00

Yeah... I know... it has been a while. Sorry, I have been busy. Christmas at home with my family was amazing as always. It always is so nice to go home. In terms of pain not too bad, except I woke up with an extra gift (my period) on Christmas morning, so the day was a bit of a blur of Percocet and Gravol to cope with the pain and nausea.

The flights... lol, delayed 6 hours on the way out, and right before landing on the way back, they closed the airport and we were rerouted to Victoria. Thankfully I was flying WestJet, so after waiting in a massive line up for 9 hours I was given hotel vouchers etc for the night before they got us home on a charter bus and the ferry free of charge. Such a long ordeal for a mere 1 hour flight.

I finally have my follow up appointment with Dr. W on Monday, and we should be booking surgery then. The lesion in my muscles was massive over the holidays. It hasn't been that big and swollen since it first appeared last summer. I will update the details again on Monday. Enjoy the new episode of Grey's tonight and have a great weekend!
xox

Christmas!

2008-12-19T00:05:00.000-08:00

I am so excited, one more day of work tomorrow and I fly home to Calgary on Sunday! I think I definitely need to time away to be with my family and friends and just get away from it all. I have been so busy with life that I just had the chance to do my Christmas shopping yesterday (and all finished in 2 hours, not bad). I normally love Christmas shopping and will spend quite a few days doing it, but this year there really has been no time. Next year I hope things will be a little more calm and less frenetic.

One new thing I am considering is naturopathic medical school to become an ND. It is a fascinating subject, but the big question is am I willing to put in the additional years of school? I am not sure yet, but will mull it over during the holidays. Sometimes you just need to think in a relaxed environment.

I am also so excited to see my baby niece again. It is so hard that she is in Cowtown and I am here. I can't believe she is 7 months old already! If I don't manage to get back on here before Christmas, I wish you all a very Merry Christmas/Happy Holidays and a very happy, healthy, prosperous, and pain-free new year!
xo

Update

2008-12-02T23:57:00.000-08:00

It has been a while, so I thought I would add an update. It has been an up and down few weeks, having some great days and some pretty horrible ones. On my good days, I try to have as much fun as I can. On my bad days, things have been pretty rough to say the least. I think I have had a couple of cysts rupture over the past few weeks. Not a pleasant experience. I haven't been sleeping well either, most nights I am too sore to relax and sleep. I am really looking forward to Christmas, I miss my family like crazy out here, so I can't wait to go home and just enjoy the holidays.

Labor Pains and Boobs?

2008-11-11T19:08:00.000-08:00

I am pretty sore today, have been having what I consider to be "end stage labor pain" type cramps. Not that I have ever been in labor, but that is what I imagine it would feel like. It is like your uterus is literally trying to turn itself inside out while simultaneously being stabbed with a sharp knife. Not so much fun. On a brighter note, today is my 5 year boobiversary of my implants. Even through all of this endo hell, I still have awesome boobs, lol. Happy Rememberance Day, and lest we forget.

Follow up....Next Year

2008-10-26T23:25:00.000-07:00

So I can't get in for a follow up until January 12, 2009, so I am a little pissed. First, that is a long time for me to be off of the pill (I take it continuously), which I very much rely on for multiple reasons, including endo pain relief. Second, it is so far away that I can't even guarantee if she'll be able to feel the lesion or not. If she can't feel the lesion, I'll have to wait another 3 months to get back in again before booking surgery. If that is the case, I will be having surgery next summer or fall. I am supposed to have my other "work" done next summer, not endo surgery! Maybe I am just having a bad day, but it is just really frustrating when you are in a lot of pain and nobody seems to care.

I also saw a new plastic surgeon this week regarding a revision of my rhinoplasty and the insertion of a small malar implant (which I am still debating. I have received strong advice to do it and not do it by very knowledgeable people, so we will see.) I definitely want my nose redone to fix the middle of the bridge and further refine the tip a bit more. I want to get this done next summer, but it will depend on whether or not I get in for lap #3 on time or not. Waiting is not fun, time goes by so slowly when you are in chronic pain!

Doctor Appointment Today

2008-10-08T12:27:00.000-07:00

Today I had another appointment with my endo specialist, and yes, the CT scan shows that the lesion is most likely endo. I will be looking at surgery probably in March. The good news is that the incision is likely going to be much smaller than I thought it would be 1-1.5 inches, plus the laparoscopy incisions, and can be done as a day surgery. Yay! Yes, surgery sucks, but I knew the surgery would be necessary, and this is the best possible outcome accepting that fact. So now my doctor wants me to go off the pill for a month or two so we can map the lesion, and then it is just a waiting game until I get in for surgery.

I am heading home tomorrow for Thanksgiving, it is a crazy 10-12 hour drive, but nothing that a lot of Starbucks can't help. I am so excited to go home for a visit- I have only seen my family once since I moved back to my current city in March. Happy Thanksgiving everyone! xox

Tough Day

2008-10-04T17:02:00.000-07:00

Wow, today has been a very bad day in terms of pain. I feel like an ovary has just exploded or something. It is bad. I had an appointment this morning, and after I finished I went to the mall, and started to feel a bit crampy, so I decided to go back home. About 10 minutes later, my pain was getting really bad, and by the time I hit Broadway I was ready to pass out and throw up. I am really not sure how I managed to get home, all I really remember is taking pain killers and Gravol when I got home, and falling on my bed. I see my doctor on Wednesday, I just hope it never comes back like that again-I thought I was going to die.

Tummy Update

2008-09-21T23:05:00.000-07:00

It's been a busy couple of weeks, and I am still in quite a bit of pain. My abdomen is constantly sore and crampy and I have sharp, stabbing pains where the lesion is. I makes it really hard to do everything that needs to be done because all I want to do is curl up in a ball and die. Dramatic, yes, but living with chronic pain is exhausting! I see my doctor in a couple of weeks, so hopefully she can do something to reduce the pain until my surgery. I can't believe we are almost through September already! It has gone by so fast! I am hoping to make it out home for Thanksgiving for a bit this year, so it will be good to get a way and just chill.

CT Results

2008-09-11T18:43:00.001-07:00

I got my results from my CT yesterday. They obviously found the lesion in my abs, but they also found ovarian cysts, which could be endometriomas as well. I go back to my specialist October 8, so I should know more then, as well as talk more about surgery.

I am not feeling very well today, I have quite a bit of abdominal and pelvic pain and am feeling nauseated. I am popping Advil and Gravol like candy to try to function through the pain and nausea. Hopefully I will start to feel better soon.

End of Summer Vacay

2008-08-31T19:06:00.000-07:00

I decided to take a last minute mini-trip out to the Shuswap Lake to visit my sister and baby niece tomorrow, who are out from Calgary. I didn't get a vacation this summer because I have been too sick, so I am excited, even though it is just overnight!

CT Scans and Cheekbones

2008-08-29T02:37:00.000-07:00

I had my CT scan on Tuesday, it was a lot easier than I thought- I didn't have to drink any barium, which was great! The iodine contrast IV made me feel kind of sick, but it went away later that day. I still don't know my results, they won't tell me what they saw, I have to see my doctor first. On a happier note, I booked a consultation with my plastic surgeon in Calgary for a cheek augmentation (malar implants). When one is going through all of this ugly medical stuff, it is always nice to have something pretty to look forward to.

CT Postponed

2008-08-19T13:41:00.000-07:00

Today I got a call from the hospital saying their CT is down, so now my CT is postponed until next Tuesday. So frustrating!

Abdominal Mass

2008-08-17T00:10:00.000-07:00

So for the past couple of years, my pain has been steadily increasing. About 1 month ago, I got really, really sick all of a sudden, and realized I had a hard mass in my right abdomen, just slightly above and lateral to my belly button. I had gone into work, and was sent home because I was so unwell. There was no way I would be able to see my family doctor, so I went to a walk in clinic near my house. Once I got there, she did a brief exam and sent me straight to the nearest ER, thinking I had an acute case of appendicitis. Once there, instead of waiting for hours before seeing a doctor, I had a private room, changed into a gown, and was seeing a doctor within 20 minutes.

After the med student had made his assessment, his supervising doctor came in to check me again. She was dead set that I must have PID (I don't, and I knew that, but she didn't want to listen), gave me the most painful internal exam possible, and left. The lab tech came in for 14 (yes, I counted) vials of blood, and a nurse came in regularly to test my vitals. After waiting for the blood work to come back, they realized that I did not have appendicitis, and was given a requisition for an ultrasound. She had no idea what was wrong with me. So I went home for the night.

The following morning, I got a call from the radiology department at the hospital to come in for an ultrasound. Usually my ultrasounds will take 15-20 minutes, tops, this one took an hour and a half (of scanning). After the U/S tech got all of his views of the mass, he left to show the attending radiologist. He came in, to "have a second look", and more and more doctors started to trickle into the room to look at me like a lion in the zoo. Ever see the Grey's Anatomy with the "pregnant" man with the teratoma? It was kind of like that. I was starting to freak out a bit because I was starting to think I had cancer or something. Finally, they decided that I have a large endometrioma (a cyst full of endometriosis) growing inside my abdominal muscle wall, which is quite rare. They think that some endo had been transferred in a previous lap. Usually if endometrial tissue gets transferred surgically, it is direct uterine endometrial implantation during a C-section. So what that means is that I am kind of a medical freak.

So I got back into see my endo specialist about 2 weeks after my hospital trip. She wants more views of the mass, and has me going in for a CT scan this coming Wednesday. The bad news is that this will likely need to be removed surgically, and it can't be done laparoscopically, so it will be a much more diffucult recovery and I will have a big scar. I am hoping that it will be possible for her to remove the mass and laparoscopically remove the typical pelvic endo all in one go. We will have to see what the CT shows on Wednesday.

A Little Background on Me

2008-08-16T01:43:00.000-07:00

I am a very normal 25 year old in a lot of ways. I love hanging out with my friends, shoe shopping, am busy with work, school and looking for Mr. Right. However I am dealing with a disease that causes me chronic pelvic/abdominal pain, severe fatigue, nausea, and a 30-40% chance of infertility. This disease affects an estimated 5-10% of women, yet it takes on average 10 years to be diagnosed. Common treatments include frequent surgeries, strong hormonal medications that induce an artificial menopause or masculinization, and castration. Not a very good list of options, to say the least! Symptoms range from severe menstrual pain, chronic pelvic pain, infertility, bowel pain, urinary pain, heavy bleeding, fatigue, nausea, pain with sex, internal bleeding, and immune problems. There is no cure, and very little research. What is it? Endometriosis.

Endometriosis occurs when the lining if the uterus (the endometrium) grows outside the uterus. This tissue (or implant) responds to hormones the way normal endometrial tissue does- it builds, and bleeds. The major problem with this tissue bleeding is that the blood has no where to go, so it starts to break down internally, provoking a huge inflammatory response that causes excruciating pain and internal scarring that can lead to pelvic/abdominal organs forming adhesions and literally gluing themselves together. This happens every month, so no wonder why us with "endo" are in so much pain!

One would think that being in this level of pain would be an alarming symptom for doctors to find in their patients, but this is often not the case. Doctors often play down the pain, saying we must be exaggerating our symptoms. They tell us it is normal, ask if we have tried Advil (are you fucking kidding me?), suggest it is psychosomatic or due to a "maladjustment with femininity"(the only maladjustment I have is that I am in pain!) and try to prescribe antidepressants medications. Or they just ignore you altogether. It is almost shocking to find a doctor who will listen and treat this disease appropriately. However, the ones who do are GOLD!
My first period was horrendous. I was in so much pain I was passing out and throwing up. This level of pain continued throughout high school until I started the pill in grade 12. It helped a bit, but I was still out of commission a shocking amount. When I was 19, I moved away to go to school. My symptoms only begin to intensify to the point where I was in so much pain I could not move. I was so nauseated and exhausted all the time, that I began to miss a lot of school. My new family doctor strongly suspected endo, and referred my to one of the top endo doctors in the country. This doctor wanted me to undergo a diagnostic/operative laparoscopic excision with biopsy, a surgical procedure, to give a definitive diagnosis. As I waited for surgery, my health continued to deteriorate to the point where I was expelled from school due my illness. I physically was in too much pain to get out of bed. I had my laparoscopy (lap) 2 weeks later in May of 2003.

My doctor did indeed find endo, not a lot of it, and it looked like nothing in the pictures she took, but it was very metabolically active tissue that can cause massive amounts of pain. Recovery was pretty easy, and I was doing pretty well for about a year. Symptoms slowly began to get worse, and I had a second lap in November 2004. Recovery was more difficult this time around. Since then I have learned so much about this disease. I started nutritional therapy, acupuncture, traditional Chinese medicine, among other things, and was doing quite well for a long time. Symptoms have been slowly creeping back up on me, to the point where I am today, facing endo surgery #3.