Bad Gas!

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As much as I’d like to giggle, I’m not talking the *funny* kind of gas.  I’m referring to the Carbon Dioxide case trapped in your body after a laparoscopic surgery. Approximately 35-80% of patients who undergo a laparoscopic surgery complain of shoulder pain.  It is reportedly supposed to last for up to 72 hours, but some women have the ongoing pain for longer (mine lasted a few days longer).

During a laparoscopic surgery, Carbon Dioxide is injected into our abdomens to create a distended abdomen, a big balloon, so the surgeons can look around inside without all of our crammed organs in the way.  Some of that gas remains in our systems after surgery, causing pain. There are a few theories as to what causes the post-op pain in our shoulders:

1) your shoulder hurts because the trapped CO2 gas;

2) the CO2 gas causes “cellular death” and nerve irritation, which travels upward and manifests in the form of severe shoulder pain.

Whatever the reason: it hurts (seriously, the worst pain I’ve ever felt; paralyzing pain)! The Phrenic Nerve traverses along  the neck, between the lungs, and down into the diaphragm.  Carbon Dioxide induced pain can travel up this nerve and settle around cervical nerves.  Also, if you have CO2 gas trapped between your liver and diaphragm, it may cause further pain to your upper abdomen and shoulder.

Surgeons and  facilities can take steps to try to reduce this pain by removing as much of the gas from your abdomen prior to closing you up.  Some facilities even take great care in monitoring the temperature of the gas during the procedure (studies are out there to confirm if this actually makes a difference).

Whatever steps are taken, you may still experience shoulder and abdominal pain and discomfort. It’s normal. You’re not dying.  You will be okay…AND it will get better.

Tips for Dealing with the Pain:

1. Walk around a lot (well, as much as you can post-op)! It seems to help work out whatever is going on in there. I did a lot of slow laps around the apartment. Besides, this helps you avoid blood clots…

2. Use a heating pad!  Put it on the shoulder that hurts.  It truly did help me.  Personal tip : avoid cold packs or ice – only made it excruciatingly worse for me!

3. If you can, lay flat on your side.  It’s supposed to help.  Another personal tip: When I tried to lay flat, it only cause severe and sudden pain in my shoulders and lungs.  I did a lot of sitting up and laying back on a stack of propped pillows. Flat was not my friend.

4. Use Gas-X.  Oddly enough, began to make me feel better, faster.  You may want to check with your doctor if this is okay for you.

5. Drink warm beverages: peppermint tea, lemon tea, or even a glass of ginger ale.

If I ever have to have another laparoscopic surgery, this is the post-op side effect I will dread the most.  But knowing about it, and expecting it, will hopefully make it easier to bear.

Are you scheduled for a laparoscopic surgery and this blog has scared you? I’m sorry.  Please, please, pleeeease talk to your physician about it.  They’ll put you at ease.  I wasn’t aware of this side effect when it occurred (if my surgeon told me, I was too out of it to remember) and just wanted to let you know, in case you didn’t…

Resources:

Buzzle

Center for Endo

Steady Health

U.S. National Library of Medicine

Videoscopic Institute of Atlanta

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

Share Your Story : Angela

Angela

Angela was 29 when she found out she had Endometriosis.  Now 32, she continues to have pain and problems, despite several excision surgeries.  She lives in Darwen in the United Kingdom and she and her fiancé are the proud and happy parents of their fur-baby, Alfie. They continue to push on and live, despite these difficulties.

Angela’s Journey: I’ve always struggled with painful and heavy periods since the age of about 14. I was used to going months without one and then the floodgates would open and the Hell would start again. When I was 18 I was diagnosed with Polycystic Ovarian Syndrome. To be fair I was quite lucky with my symptoms. Yes I put on weight but thankfully I didn’t develop excess hair. It was manageable. I was prepared for potential fertility issues but I wasn’t overly concerned. And then it all went wrong. So so wrong.

Around November 2010 and my 27th birthday I started experiencing severe discomfort and pain in my pelvic area (or my noo noo as I call it – you will see I’m a little bit ‘special’ as this blog progresses!). Sex started to become painful and then there was the bleeding. Without wanting to be gross or too graphic for those of you with a sensitive tummy, I bled heavily for about 3 months. There was no let up. I will admit that I was terrified, especially after making the mistake of Googling the symptoms. After losing my mum to breast and ovarian cancer the year before I really should have avoided the internet at all costs. I trotted off to the doctors convinced that I had cancer and was most probably dying. The GP referred me to the gynaecologist at the local butchers, I mean hospital, who in turn referred me to a specialist at a neighbouring hospital. This specialist turned out to be a fertility specialist – not really what I needed but he said I needed a laparoscopy, which he duly carried out.

For a ‘minor’ operation, it knocked me off my feet and the recovery hurt like Hell. When I went for my follow up appointment he told me I had IBS and should lose some weight. Now I will admit that I had started to pile the weight on. My tummy was permanently bloated. I wasn’t fully convinced but was happy to have an answer, even if I doubted the answer given. I took the medication prescribed and then more problems started. Prior to taking these pills, I’d not had that many toilet troubles, but I soon did. As soon as I threw the pills away, these troubles stopped but the pain persisted and increased. This started many, many appointments with what I can only describe as a bitch of a GP who kept saying it was just IBS and I was over-reacting.

Eventually I was sent for an internal ultrasound scan. There I was told I had enlarged ovaries and the PCOS was active but there were no tumours and no endometriosis. By this point I was really starting to wonder what on earth was wrong with me. I began to worry that people would think I was imagining it or putting it on. In time I was referred to a gynaecologist at a local private hospital (although as an NHS patient). The man I was going to see had come highly recommended so my fiancé and I were feeling hopeful, especially after the first meeting with him. He seemed very understanding and sympathetic and said I needed another laparoscopy. So again I was put to sleep and prodded about with, and again the recovery was not fun. Thankfully my lovely man looked after me and spoilt me rotten.

The follow up came and the surgeon told me that he wasn’t surprised I was in so much pain as I had endometriosis. He showed me some scary pictures of my insides and then we discussed what my options were. By this time I’d had enough of the pain and it was agreed that a hysterectomy was an option, but first I had to take a 6 month course of Zoladex injections which would shut my ovaries down to see if this helped the pain. To cut a long story short, the injections did not help at all, just put me into a false menopause. So a full hysterectomy was booked and on January 31st 2013 I went into theatre and was removed of all my dreams of ever having children, removed of a large part of my feelings of femininity and removed of my sanity, internal thermostat and my control of my emotions.

In March I went to see the surgeon again and explained that the pain had not stopped. He did not seem surprised by this and said he suggested that I may have endo on my bowel and possibly IBS as well so he referred me to a colleague of his. This colleague was a brusque Yorkshireman who seemed to have no interest in what I had to say. He just booked me in for a colonoscopy (even now the words ‘bowel prep’ fill me with dread and make me hope that I am in close proximity to the toilet) and that was that. The colonoscopy showed nothing at all and so it was back to square one. I was then referred to a new surgeon – supposedly the best in the field of endometriosis in the area where I live. In March 2014 he carried out yet another laparoscopy which confirmed that the endometriosis was still there and that there was remaining ovarian tissue left behind after the hysterectomy. Then it was a 3 month course of Zoladex again which helped a little bit and showed the surgeon that the endo was still active.

Yesterday I saw the surgeon again and I will be having another laparoscopy to remove the ovarian tissue and any endo that he finds. It is looking like this could be the last surgery as each procedure is getting riskier and to be honest, they don’t seem to be working. Due to the nerve damage that the endo has caused, I will also be referred to a pain management specialist. Everyone always asks if Mick and I will adopt in the future and the honest answer is probably not. I always wanted children, but after going through all of this, I just want my life back. We want to travel and get back all the years that this disease has taken from us. We have accepted that children are not likely to be part of our future, but I will never rule it out 100% – plus a naughty little pup called Alfie keeps us on our toes at the moment.

Words of Advice for Us:  Listen to your body. You know when something is right so stick to your guns. The number of doctors who tried to make me think that I was imagining it was ridiculous. I had to fight to even get diagnosed and treated. Persistence pays off so don’t take NO for an answer.

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

Send her an email: collinsona@yahoo.com

Follow her blog: angelatheendoprincess.wordpress.com/

I want to send a special Thank You out to Angela for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you!!!   Angela, always enjoy the company of your fiancé and fur-baby. Live! And may your upcoming pain management treatments offer you some peace.  Please keep us posted.

 

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

Yours, Lisa.

EndoInvasion : Stages

A stage with the Bloomin' Uterus logo centered on it in a spotlight
Our Uterus : center stage!

So there are four “Stages” of Endometriosis.  It’s the doctors way of categorizing the depth of the EndoInvasion in our bodies.  It was developed by the American Society of Reproductive Medicine.   Diagrams of the various stages can be in an article published in Fertility & Sterility back in 1997.

I didn’t know my Stage level and had to ask my doctor.  My Endometriosis was Stage 4, the most severe it can get. Probably because it was brewing inside me undetected for nearly 2 decades. Ugly disease. (Update: As of June 6, 2019, I’ve now had a total of four excision surgeries; each one classified my illness as Stage 4).

The interesting things about Stages: the Stage Level doesn’t necessarily dictate our symptom or pain levels.  Someone with Stage 1 can have severe pain, while someone with Stage 4 may not even realize it.  Just one more mystery o’Endo.

So what are these Stages?  Here ya go:

1

Stage 1 Endo (Minimal) : subtle growths and implants that may be present.  These are considered superficial implants.  No adhesions (spiderweb-like scarring) are present yet. Evidence of inflammation may be found.

2

Stage 2 Endo (Mild) : Spots (implants/leions) are beginning to take shape and form over your body’s organs and tissue.  There are more than Stage 1, and are deeper in the body. Adhesions may have begun to form. The lesion colors can range from clear to black.

3

Stage 3 Endo (Moderate) : Same as above, but implants and cysts are present, usually on the ovaries. The lesions may be deeper.  Adhesions may be in greater number.

4

Stage 4 Endo (Severe) : Same as above, but many more solid masses of Endometriosis, as well as deep implants.  One or both ovaries have entrometriomas (a blood-filled chocolate cyst), and extensive adhesions are binding organs or tissue together.  The bowels, bladder, and other organs may also be involved.

Regardless of what Stage of Endo we are (or were at the times of our excision surgeries), all EndoSisters share this invisible illness.  And we all share the desire for better treatments and a cure to be found.  We are all in this together.  We all suffer together.  And we’ll get through this…together.

(Updated June 6, 2019)

Resources and More Info:

Endometriosis Foundation of America

Fertility & Sterility – (Article; 1997) – Revised American Society for Reproductive Medicine classification of endometriosis: 1996

Johns Hopkins Medicine

Healthline

Merck Manual 

Wikipedia

I <3 my Robot

In June of 2014, my surgeon opted to perform a robotic laparoscopic surgery to remove the cysts from my ovaries.  Little did we know, the surgery would progress into an excision surgery to remove Endometriosis implants that we didn’t know existed inside.  A traditional laparoscopic surgery is performed through a rather large incision in your abdomen, while robotic is done through small “ports” (incisions) where robotic tools are inserted and the doctor operates at a remote station, controlling the wee robotic arms. AND there’s pictures!

The surgeon’s plan was to go through my bellybutton, extending it a little bit with a small incision, remove the cysts, and close up my bellybutton (a single incision laparascopy). Voila: done.  However, it was discussed that he may need to open up multiple ports if things “weren’t as they seemed” once inside  (the middle image below).  Which is exactly what needed to be done.  The robotic surgery avoided the traditional, large incision (first image below).

single-incision

It was amazing being wheeled into the operating room and there’s this gigantic robotic spider looming in the room.  And the surgical staff, nurses, and anesthesiologist were all light-humored and it was a phenomenal experience falling asleep.  Not so phenomenal after we were home and the drugs wore off…but…that’s besides the point.

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What IS the point, you ask? I ramble!

I find it absolutely incredibly amazing that surgeons can operate on someone who is lying down on a table, while the surgeon is seated further away, looking through a viewfinder, with tiny little controls operating even tinier little robotic arms inside my belly!  Surgeons can even do this remotely : for example, doctors in New York performed an hour-long surgery on a 68-year-old patient in France. Tiny Little Robot Arms! Amazing!!

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See the wee tiny robot arms doing their business? 🙂 These are my insides! Bwuahaha.

It’s been almost five months since surgery.  My bellybutton still isn’t normal (I don’t expect it ever will be) and I love my wee tiny port scar on my right hip.  It was not an easy recovery, but if I ever do need to go back in for excision surgery or a hysterectomy, I will certainly be insisting on the robotic version!  Dr. Mel Kurtulus is a brilliant surgeon and he genuinely cares about his patients.

Now, if they could just perfect the procedure of having to inflate our abdomens with Carbon Dioxide, that would a huge improvement.  Not only is the bloating unbearable, but the shoulder and rib pain caused by the gas and dying nerves is completely the worst pain I’ve ever been in. More info on that can be found here.

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Day 1 post op vs. Day 9 post op. And 5 months later, no regrets!

Remember…robots are our friends.

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