Ending the silence. Waging the war on Endometriosis.

Month: June 2017

Endo Warrior: Ashley Cawood

Endo Warrior: Ashley Cawood

Endo Warrior: Ashley Cawood Finally at  24 I got the possible diagnosis only because my periods were so bad I was bed ridden. Or I would end up in ER even without being on my period from pain. It got so bad I would have […]

Endo Warrior: Paige Gibbons

Endo Warrior: Paige Gibbons

Endo Warrior: Paige Gibbons My name is Paige, I am 28 and I’ve experienced endo symptoms since I was 16. Like many endo sufferers I didn’t get a diagnosis for years, for me it took about 7 years. Doctors didn’t believe me, they thought I […]

Vital Message

Vital Message

Why you got to be SO cruel

Oh Emergency room, I forgot how much I loathe you, just KIDDING. I will always remember that. It’s no secret that I am trying to conceive, so when having Endometriosis and Adenomyosis I legit live in a fear of what can potentially happen to my body. In the past, I would pass on going to the ER, even if that meant potentially losing an ovary (I am not trying to be insensitive, but I would legit lay there if it meant going to the ER). SO now that I am trying to conceive I am trying to ensure the best possible care for my body by checking to make sure I do not lose any of my reproductive organs, due to it already being hard enough.

I get to the second ER of the night, since I left the 1st for being a 4 hour wait and I am hunched over in so much pain, I check in and I have a seat. I ask them to re-heat my heating pad and was informed that they could not do that. I asked why and someone insisted on saying they do not have a microwave due to the staff setting too many fires with it…. COME ON. That is a complete load of shit, so they offer me a heated blanket instead. Well, I got just a regular old blanket, which clearly is useless…

When I am finally admitted, I do the urine screening to confirm I am not pregnant, but I guess my red sea pouring out of me was not a good enough hint that I was not, which I get it…it is proper procedure. A male doctor comes in to do my exam. At this time I was alone and he is sitting at my bed side staring at me blankly… The first question: why are you here today? I give such an insightful answer; I stated to him where my pain was located, having nausea, no diarrhea, no vomiting, took no medication at all, drank only 1 bottle of water that day, my recent surgery, what was preformed, my medical history and most importantly my concern of having a rupturing cyst potentially. He stated, “Well that’s no emergency”, I just about fucking LOST it. Yes, I know I cannot die from endometriosis, but this pain is not normal and trying to get pregnant I wanted to ensure the safety of my reproductive organs. He proceeded to do a pelvic exam where he practically put all his weight on me, bursting into tears I asked him to get his hands off me and to not touch me, that I was done. He walked out awkwardly.

A nurse came in and I inquired about my heating pad since I was now admitted. She reported that she could not heat my heating pad due to cross contamination in the microwave, but she would contact the OB GYN department and have them send their heating pads. I asked the nurse what was going on with the doctor and I was informed they were sending me a new doctor and I asked why, for which she stated, “just to make sure your story lines up, everyone is seen by 2 doctors for that reason”…. WTF does that even mean?! The nurse comes in with two heating pads, both do not work. I shit you not that is what my luck comes down to, so I asked again about my heating pad.

Finally, a nurse was able to heat my heating pad after consulting with a new female doctor, who ensured that my concern was being heard and she would like to do an ultrasound. After everything was completed with my IV fluids and Toradol I was able to go home safely knowing I was going to be fine and will follow up with my specialist. But it’s not easy swallow that pill of how we are treated; I HAD to be my own advocate in that situation, I had to hit them with knowledge, all the knowledge that I found my very self. And you know what, as angry as I was, I knew that it would be used for the perfect fuel to continue spreading awareness.

Knowledge is POWER

In recent events for the Endo community, a fellow warrior had passed away (may you rest in peace Allison Kimberly) and the amount of support is absolutely incredible and how flooded Instagram became. It goes to show how strong our Tribe is. Conversely, it became heartbreaking that the wrong information was provided, which will give her no justice at all. Allison Kimberly was neglected and pushed aside by a hospital, which I will not mention on APRIL 3RD. Yes, I said April and with it being June, it was by far not her last post on Instagram. This does not excuse her for the way she was treated, but our approach needs to be different and that starts with the truth. We are dismissed too much as it is. We will only dig ourselves a bigger pit with false information. SO, continue to advocate for ALLISON, yourself and our fellow warriors.

Advocacy 

An Advocate is ‘a person who pleads another’s cause, or who speaks or writes in support of something’. With advocacy we are making changes for the better. For the Endo Community, we are attempting to change unfair, discriminatory, abusive treatment, improving services and removing barriers which prevent access to full participation in the community.

What Advocacy is NOT: 

  • Creating conflict
  • A chance to get ‘even’ for the past wrongs

What involvement can you have

♥ Share your story loud and proud! via however you would like (WE WOULD LOVE FOR YOU TO SHARE IT ON OUR PAGE)

♥ Getting involved in the Endo events that are offered

♥ Purchase Endo What? Merch and donate it to a school or hospital

♥ Get involved in a video, blog post, podcast, etc.

There are so many options available, just ask a fellow sister and one is bound to help.

 

I wanted to end this post by sharing a video that I participated in during the very beginning of my journey. The amazing Casey Berna had created this video and the most incredible warriors took part. I cannot express how blessed I am for them in guiding me and in their support. Wherever you girls are, I am sending so much love and thank you for getting me to where I am today ♥

EndoTruths

The Uterus and the Duderus

The Uterus and the Duderus

‘The Uterus and the Duderus’ Podcast about Endometriosis By: Nik Bartunek and Paige Gibbons “Two ridiculous friends who love wizards and clowns. Paige has a chronic illness called Endometriosis, which is where Satan lives in her Uterus. “ The Back Story: The idea for my podcast ‘The […]

“The Doctor Will See You Now”: An Endo Book Review

“The Doctor Will See You Now”: An Endo Book Review

To all my fellow endo warriors searching for the right words to explain to their loved ones about your experiences with endometriosis, I have found the resource for you! This book, The Doctor Will See You Now by Tamer Seckin, MD, is the PERFECT tool […]

Preparing for Surgery

Preparing for Surgery

As if surgery is not stressful enough, prepping for it can become even more overwhelming. After having three surgeries, I would not say I am an expert, but I have learned each time around something new and more useful. Before I continue I want to say the things I am presenting have specifically helped me and I do not guarantee they will help you…

Prepping:

I am very anal when it comes to having things in place, but I felt comfortable having things ready a week in advance, that way I could relax. When it comes to prepping, it does not just mean having material things into place,  it also mean prepping your body. When I went to the CEC for my surgery I was sent a list of medications to avoid, that I believed was extremely helpful. The medications/supplements below will reduce the blood’s clotting ability for days and substantially increase the risk of bleeding or can interact with or be otherwise contraindicated to anesthesia and/or surgery. It is important to stop taking the following at least 2 weeks prior to surgery.

ACTIFED, ADIPEX, ADVIL, ALKA SELTZER, ALEVE, AMITRIPTYLINE, ANACIN, ANAPROX, ASCRIPTIN (ALL PRODUCTS), ASPIRIN (OF ANY KIND),

BAYER, BUFFERIN, BUPROPION

CATAFLAM, CHERACOL, CHROMIUM PICOLINATE, CLARITIN, CLINORIL, CONTAC, COPE, CORICIDIN, COUMADIN

DARVON, DIUREX, DOAN’S, DOLOBID, DRISTAN

ECHINACEA, ECOTRIN, EMPIRIN, EXCEDRIN

FELDENE, FEVERFEW, FIORICET, FIORINAL, FLUOXETINE

GARLIC (ALLIUM SATIVUM) TABLETS, GINGKO BILOBA, GOODY’S HEADACHE POWDER

HEPARIN, HERBAL SUPPLEMENTS & TEAS (ALL), HYDROXYCUT

IBUPROFEN, INDOCIN, INDOMETHACIN

KETOPROFEN

LORTAB

MAO INHIBITORS (SHOULD BE TAPERED/WEANED OFF AT LEAST 2 WEEKS BEFORE SURGERY), MEDIPREN, MELATONIN, MIDOL, MOTRIN

NAPROSYN, NORGESIC FORTE, NUPRIN, NYQUIL

ORUDIS, OXYCODINE, OXYCODONE

PAMPRIN, PERCODAN, PEPTOBISMOL, PLAVIX, PONSTEL, PROZAC

QUININE, QSYMIA

RELAFEN    VOLTAREN    WARFARIN-(COUMADIN), RUFEN

SINEAID, SINEOFF, SOMA

JOHN’S WORT, JOSEPH’S ASPIRIN

SUDAFED, SUPRENZA

TRIAMINIC, TORADOL

VANQUISH,   VITAMIN E (HAS ANTI-PLATELET PROPERTIES AND INHIBITS VITAL CLOT FORMATION; PLEASE CEASE AT LEAST 2-3 WEEKS PRIOR TO SURGERY AND FOR 2-3 WEEKS AFTER)

 I highly suggest taking Vitamin C daily a month prior to surgery in order to build your immune system because after surgery your body will be fragile. Two days prior to surgery I avoided solid foods and ate very light because I knew the intense bowel prep that was ahead of me would be not be good with solid food.

Preparing :

Must Haves

Clothing

Recommend very loose-fitting clothing, no bands on pants, etc…

  • Tunic Shirts (My personal favorite because of how flowy they were and far from being fitted)
  • Buttery soft leggings (Stray away from the athletic ones, they have a tighter band)
  • Loose Dresses (If you do not want a pant)
  • Easy Lounge Bra ( Victoria Secret makes a super comfortable one, it has no metal to it, no underwire, which became a life saver with it being super soft and NOT tight at all, plus has a longer band which prevented my belly binder from rubbing)
  • Seamless Shorties (Hands down the most comfortable undies ever, I am fucking obsessed, I don’t know about you, but I get very irritable after surgery and hate even the slightest wedgey)
  • Extra Undies (in general you want a lot of panties on hand because of bleeding after the surgery and the bowel prep)
  • Slippers or slip grip socks (already so uneasy, trust me last thing you want to do is fall)

Medications

  • Gas-X (it supposedly helps with break down the gas pain that will be in your shoulders)
  • Stool softener (the struggle with constipation after surgery is real, this is so important to have)
  • Throat lozenges (The breathing tube will leave your throat incredible scratchy)
  • Ibuprofen
  • Vitamin C (definitely take before and after to help build your immune system)
  • Prescribed medication; pain and nausea (have someone fill it during your surgery, so you have them immediately when you go home)

Personal Products/ Hygiene

  • Pads (cannot have anything in your vagina for 2-6 weeks)
  • Non-scented bacterial soap (I used this a couple days when I could clean my incisions)
  • Baby Wipes (trust me when I say your asshole will be chapped after the bowel prep, wipes will give you comfort after that as well as cleaning up blood after surgery)
  • Butt Paste (if you are super uncomfortable)

Creature Comforts

  • Heating pad (Pelvic Pain Solutions have amazing heating pads that are microwavable, I have two, traveler one and the diaper one because it heats all the right spots) I definitely recommend having 2 because abdominal pain and the shoulder pain that will occur
  • Belly Binder (it is a Velcro abdominal corset looking piece, that helps with putting pressure on the abdomen *life saver when coughing, sneezing and going to the bathroom)
  • Body Pillow, actually a shit ton of pillows to surround yourself by
  • Tablet/ laptop
  • Headphones
  • Hair Ties
  • Reading Glasses (the nausea medication caused me to be temporarily have blurry vision to close up things)
  • Soft blanket
  • Stuff animal
  • Clean and soft sheets (want to come home to a clean and comfortable room)
  • Tape recorder or note book (to have notes regarding your surgery)

Food

  • Broth
  • Jello
  • Ice Pops

Pretty much anything that is not solid is good to have 2 to 3 days after surgery, because you will be bound up bowel wise. Solid foods will cause more intense constipation pain.

Final Thoughts

ASK for HELP! I can not stress enough how important asking for help at a time like this is. Our support system needs to become involved in this process along with us because we are only one. I utilized my support system in picking up my medication, taking notes after surgery (since I was not going to remember jack shit), helping me bathe, go to the bathroom, etc… I know we may feel like a nuisance, but you legitimately should not be doing things on your own and you should  accept as much help as possible in order for your body to have less strain on it during the healing process. As for the information provided above, please do not hesitate to ask questions. I have the document saved on a check list, but the blog would not allow me to attach it. I hope this has reduced your stress in at least the slightest way.

Wishing you all the best recovery process,

Chelsea♥

 

 

 

Endo Warrior: Jessica Oxenreider

Endo Warrior: Jessica Oxenreider

Endo Warrior: Jessica Oxenreider It starts when I was seven years old.  I woke up with blood in my undies.  Thinking I was dying I ran to my parents.  After months of tests, brain scans, pills, and blood draws they came to the conclusion that […]

Endo Warrior: Kimberli Davino

Endo Warrior: Kimberli Davino

Endo Warrior: Kimberli Davino Age: 28 Diagnosis: Endometriosis Since the age of 12, I have had painful periods and migraines. At the time, these were “normal” symptoms according to my doctors. I am now 28 and over the years my symptoms have progressed. I was […]