Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

**

I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.

It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.

I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!

The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.

As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)

From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).

The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.

I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.

So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them. 

I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were  going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.

Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat  on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!

The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)

I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.

In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).

I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.

On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?

The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.

😊

At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted 

**

Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:

On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?

The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.

In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.

In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.

In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.

On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.

My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July 2018 during an excision surgery Dr. Kurtulus discovered a pair of Endo lesions on my small intestine . He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


Toilet with toilet paper

The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

Lisa Howard making a face at the first sip of SuPrep

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

Doodle of bowels

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

Diagram showing the portion of bowels removed during surgery

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor
Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


Doodle of Endo

The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


Photo of Lisa Howard recovering in hospital

The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

Hospital chart showing I farted 3 times since 11/28/18

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

Chart comparing bowel movements and pain between November and January

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤


Dollar signs

The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance paid per contract
$1,687Endo Excision Surgeon Bill Insurance paid per contract
$2,082.19Pathologist Bill Insurance paid per contract
$3,416Colo-rectal Surgeon Bill
Insurance paid per contract
$2,800AnesthesiologistInsurance paid per contract
$683Asst Surgeon: Excision BillInsurance paid per contract
$285Asst Surgeon: Colo-rectal BillInsurance paid per contract
$2,250My co-payI paid in full
$235,429.60Total(updated 4/4/19)

Camera

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂

Comparison photos of July 2018 and November 2018 Endo lesions on bowel

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Camera

Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!

(Updated May 17, 2019)


Pain & Poops: Then & Now

Happy poop with daisy on it's head

Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.

If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.

Embrace this discovery with me! Here’s my pain journal summary for November of 2018:

Summary of November 2018 pain and symptoms

And here’s my pain journal summary for January of 2019:

Summary of January 2019 pain and symptoms

I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!

Table of poops for Nov 2018 vs Jan 2019

Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.

If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.

But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.

Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.

Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.

(Updated April 5, 2019)

Purging my fears

Skull with gears instead of brain

As you know, this blog isn’t just a place for me to research and write about Endometriosis, or to share stories of other EndoWarriors…but it’s also my therapy.

And today I need to just let some stuff off of my chest:

Late yesterday afternoon, I received the final official confirmation that my bowel resection surgery is all approved by my insurance company.  November 26th is 10 days away. And it’s going to happen…

Prior to yesterday’s official proclamation, I was 100% purely excited.  “Get this damn disease out of me,” has been my honest response, followed by, “I’m not scared, I’m in good hands, I’m ready.”

Now? I feel as if I need to crawl into the depths of my nerve-wracked stomach.  I want to pull all the warm darkness around me and just shiver.  I’m scared.  I want to cry.  I want it to be over with.

All of the “What Ifs” come bubbling up.

What if they don’t find anything?  Even though there are photographs of big endo lesions on my small intestines…this is still my biggest What If.

What if we need to reschedule surgery because of (fill in the blank)?

What if they find more Endo and have to take MORE of my guts than originally intended?

What if I need an ileostomy bag?

What if the surgery doesn’t resolve my current pain?

What if my bowels don’t heal right, I leak, and have to go back in?

What if I suffer from future bowel blockages due to scar tissue?

What if I don’t wake up…?

I know in my heart-of-hearts that everything will be okay.  I’m in wonderful surgical hands.  I trust my surgeons completely. They’re incredible.  I’ll receive great care at Scripps Memorial Hospital for a few days until I’m released. My Mum will also be with me while I’m there.  And yet I’m still fucking terrified.

I’m terrified I’ll be perceived as weak in the hospital.  There’s a specific shoulder pain that comes with abdominal surgeries that makes me howl in pain.  It’s a noise I cannot suppress…  And for days after my prior laparoscopies, I am unable to get in and out of bed alone.  I cannot sit up without help.  I can’t use the bathroom without someone to help me get up and down.  I’m sure the nurses know this and are used to it, but I’m still worried I’ll be “that patient.”

And to top it all off?  I may very well be on my period during my surgery…

When friends, co-workers, and family members ask me, “Will this surgery fix you?” – I have to take a breath.  Then I have to tell myself I’m not broken.  THEN I explain (again) that this is an incurable disease.  That I hope it fixes it for a long while.  That I hope this specific surgery removes the source of my current pain.  

One co-worker even said, “I feel so bad for you because you’ve had so many health problems over the past few years.”  I wanted to smack her and yell, “I don’t have health problems.  I have Endometriosis.”  Such a knee-jerk reaction.   But I felt like she never really listened as I explained the illness, what it can do, why it can require so much surgery.   And it just hurt.

But having to explain it over and over again gets exhausting.

I pooped today.  The third time since 6:30 this morning.  And I cannot adequately express the agony of it.  First the right side (where my constant pain is) screamed.  Then the broken glass and barbed wire scooted across my lower abdomen…where it met up with the burning side of my left lower abdomen (which burns every time I have to shit) and finally killed me on the way out with a piercing pain.  Sitting on the toilet at work, trying hard to breathe through it and not cry out while tears escape the eyes…No good. No good at all.

Ten more days of nerves, and wondering, and playing this damn game in my head.  Ten more days of constant pain.  Ten more days of just really wanting it to be over with already.

I AM scared and nervous.  I’m in good hands.  I’m ready.  And I’m excited.

9 days, 18 hours, 59minutes, and 15 seconds to go…

And for some reason, as always, acknowledging and writing out what the heck is upsetting me always does help…at least a little bit.  So, thank you for being here to read this.   

The Bowel Resection is Coming!

Diagram of the human large intestine
The red circle is the approximate area where my Endo is

If you’re one of my dedicated readers, you’ll remember that I had my third Endometriosis excision surgery on July 18th of this year.  You may remember that during that surgery it was discovered that I had a few big ol’ chunky Endo lesions on my bowels (where my small intestine and large intestine meet) that couldn’t be superficially removed.  A colo-rectal surgeon was brought into my surgery and advised that a bowel resection should take place.

The only problems?

  1. I hadn’t prepped for a bowel resection (oh man, it’s a whole process for the few days leading up to surgery);
  2. The colo-rectal surgeon wasn’t in my insurance network.

The plan?  That surgeon was going to apply to become a member of my network and I’d have my bowel surgery with him as soon as everything was legit.  I met with the colo-rectal surgeon on August 8th for a consultation (oddly enough covered by my insurance since he poked his head into my surgery) and had a discussion of our future plans.

I was told in August that the network acceptance process could take anywhere from one to three months.  So, I sat patiently…for a while.

A month passed.  Then I called my insurance company to see if there was anything they needed from me to speed along the process.  Nope.  Then I called my colo-rectal surgeon’s office to ask the same question.  Nope.  Big fat nopes all the way around.

So I waited another month and then googled my medical group assigned by my insurance company.  On their webpage was the name and telephone number of the Director of Networking – the person to whom inquiries were to be made if you were a physician looking to join the medical group.

So what did I do? I called and left a voicemail message.  A week later, I left a second message.  And a week after that, I left a message with her secretary.

The day I left my third message…she called me back. The Director! I don’t know what I expected, but certainly not what happened next.

She apologized for not calling me back sooner but stated she was having my medical history and records pulled to review.  She found that there was no mention of any pending referral or need for a bowel resection; which wasn’t unheard of since the surgeon wasn’t (yet) an in-network physician.  BUT Dr. Schutzel (my soon-to-be-colo-rectal surgeon) likely wouldn’t be approved for another three months. Early 2019!  I wanted to cry.

I briefly filled her in. Well, that’s a flat-out lie – you know I can’t do anything “briefly.” I mean, look at this blog entry already!  Anyway…she heard me out. All of it.  And offered a suggestion:  have my gyno-surgeon put together a written request explaining my need for a bowel resection and why we wanted it to be this particular out-of-network surgeon (rather than one of the four already in-network).  Then needed to tack on a copy of my July op report, and the Directory may…and I stress the word may…be able to get a one-time-only approval to have the out-of-network (aka yet-to-be-approved) surgeon covered by my insurance to do my surgery.

I gushed my appreciation and thank yous to her and hopped on the phone with my gyno’s office.  They prepped the letter the next day and sent it off!  A few days later: *abracadabra* I get a phone call (which I missed) and listened to in my voicemail.

It was the Director of Marketing…calling me after hours to let me know that the request had been APPROVED and the next step was to coordinate the surgery date!

OMGOMGOMG

She did it!! We did it! But I never would have known it was possible if it weren’t for her taking the time to review my records, listen to my tale, and offer the suggestion!

Literally less than a week from the day we spoke to the day she called to let me know it was approved!  I’m so grateful to her and my gyno’s office!

The following morning, I called the colo-rectal surgeon’s office to see if they needed any information from me.  By lunchtime the same day…everything was all set up:

My bowel resection is scheduled for Monday, November 26, 2018, at 7:15 in the morning!

And to make things even better?

  • It will be a robotic-assisted laparoscopy, using the DaVinci system (which is what’s been used for my three prior laparoscopies); Aaaaaaaaaaaaaaaaaaaaaaannnnnnnd…
  • Dr. Kurtulus, my Endometriosis excision surgeon (and gyno and incredible human being) will be scrubbed in and at-the-ready to take a peek under the hood to look to see how I’m doing since my July surgery! And to excise any Endo they may spot along the way!

The double-whammy!!

I’m so comforted by the fact that my medical care team fought for this to be approved and scheduled so quickly.  But the super-duper comforting thought?  Dr. Kurtulus, my gyno and my surgeon, made himself available (and insisted on being present) for my colo-rectal surgery.  And influenced the decision for the surgery to be robotic-assisted.

And…this entire endeavor is a huge reminder on why we should be persistent and self-advocate.

Now here’s my question to you gals and guys:  If you’ve ever had a bowel resection, do you have any tips for surgery prep, recovery, or diet?  I have my pre-op packet and I’m sure I’ll receive a whole slew of post-op instructions…but I also like to hear your experiences and suggestions.   If so, drop me a comment below! Please!!

I’m so excited. So ready.  So appreciative!

Endometriosis & The Bowel

Diagram of human bowels

As you may know, Endometriosis is not limited to just your reproductive bits & pieces.  It can implant, grow, and fester in many places; the bowel included.  But what does that mean? How do you know if it’s on your bowel?  Today’s blog will go into that…Read on, dear Reader…read on.  Word of warning : I will be using words like fart and poop! Why dance around the subject with flowery words when I feel like I’m a giggly 12-year-old girl?

It is estimated that between 5-15% (and some even doctors guess it’s actually between 3-34%) of women with Endometriosis suffer from Endo on their bowels.  Bowel Endometriosis may affect the colon, the rectum, the large intestine, the small intestine, the colon, or the sigmoid colon.  The implants may be physically located on the bowels, or even just located adjacent to them in areas like the Pouch of Douglas, uterosacral ligaments, or rectovaginal septum. The close proximity of the inflamed and irritated lesions may be enough to induce bowel Endometriosis symptoms.  And these symptoms may also be caused by adhesions pulling or twisting the bowels.

Symptoms

Many symptoms worsen while a woman is on her period; however, many women also suffer from these symptoms all of the time…and some lucky few don’t suffer from any symptoms (aka Silent Endometriosis).  Endo on the bowel can cause pain in the abdomen, bowel, rectum, or rectal bleeding (especially while menstruating). You may feel pain while sitting, farting, pooping, or even having sex.  You may even suffer from difficulty pooping, constipation and/or diarrhea, or a sense that you haven’t fully voided after pooping.  Other symptoms may be that you feel full after eating just a small amount of food, suffer from bloating, lower back pain, cramping, nausea, decreased appetite, or vomiting.  There’s even a link between bowel Endometriosis and infertility, although a 2017 study indicates that women who undergo excision surgery may have increased fertility.

Bowel Endo and/or adhesions may cause a partial or full intestinal blockage.  If this occurs, constipation will worsen.  If completely blocked, you can suffer a perforation or tear in your colon which may lead to an infection (which may be fatal…read about Emelia).  If the blockage is severe, surgery may be required to clear it or resect (remove a portion of) the damaged bowel.

Diagnostic Tests

Just like any case of Endometriosis, the first step toward diagnosis is a detailed medical and symptom history.  A physical examination may follow and one possible indicator of bowel Endo is a tender spot inside the vagina near the rectum (this may indicate Endo on the Pouch of Douglas).  Dr. Redwine explains the cul-de-sac (aka the Pouch of Douglas) involvement a little bit better,

“When the rectum is involved by endometriosis, it frequently scars forward to the back of the uterus, causing what is known as obliteration of the cul de sac. This indicates the presence of deeply invasive disease in the uterosacral ligaments, the cul de sac, and usually the front wall of the rectum itself with what is called a rectal nodule. The disease can occasionally invade the rear wall of the vagina as well.”

Studies indicate that women who have an obliterated Pouch of Douglas are three times more likely to have bowel Endo than women without an obliterated cul-de-sac.

Transvaginal ultrasounds may also be beneficial if a physician suspects bowel Endo – women who have ovarian cysts have a 30% chance of having Endo on their bowels.  New studies are finding that transvaginal (and transrectum) ultrasounds may be able to “pick up” bowel lesions as masses on the screen and that they may hold a distinct shape of their own.

A CT scan or MRI may be conducted of your pelvic region to rule out other obstructions or masses, as written in this interesting article on the usefulness of pre-diagnosis with imaging studies.  Likewise, a colonoscopy, sigmoidoscopy, or barium enema may be used to rule out other GI illnesses; however, they often show up negative for Endometriosis.  That’s because the Endo most-often resides outside the bowel…not the inside…so these tests cannot detect Endo.

Unfortunately, the only way to confirm a suspected case of bowel Endo is to cut you open, look inside, and biopsy the lesions.

Treatment

Like all other forms of Endometriosis, the treatment is pretty much the same:

  • Patience – the Wait & See method – if the symptoms are bearable, ride them out.  Be patient.  Literally, wait and see what happens…or wait for your next excision surgery;
  • Medication – pain killers, NSAIDs, aromatase inhibitors, GnRH antagonists, birth control pills/IUD, or other medications may offer a reduction in symptoms; and,
  • Surgery – an excision surgery to remove the Endo implants from the pelvic cavity and bowel.  The implants may be shaved from the exterior of the bowel, or a deeper-removal of the lesions may be necessary.  Some women must undergo a bowel resection to remove a portion of the infected bowel if the Endometriosis is too deeply-implanted in the bowel.  Your Endo excision surgeon should enlist the help of a colorectal surgeon for this process, as there are risks of serious complications with bowel surgery.  Many women return to a higher quality of life after their excision surgeries.

And, as usual, recurrence is always a possibility…

Misdiagnoses

Dr. Doron Kopelman wrote, “Endometriosis has been described as the great masquerader,” which is so beautifully and (unfortunately) accurately written.  Endo on the bowel may be misdiagnosed and dismissed as many other GI issues.  Here are a few examples of common misdiagnoses:

  • Appendicitis – Endo in the ileum (lower right abdomen) causes pain which is often mistaken as an appendicitis.  The symptoms of an appendicitis can include right-sided abdominal pain, constipation, diarrhea, loss of appetite, and bloating.
  • Crohn’s Disease – symptoms include constipation, diarrhea, rectal bleeding, and abdominal cramping.
  • Diverticulitis – when pouches within the intestine become inflamed, infected, or bleed, the symptoms may be pain, diarrhea, constipation, tenderness, rectal bleeding, and cramping.
  • Gastrointestinal carcinoma – a small tumor within the intestines which cause very similar symptoms and/or blockages as bowel Endometriosis.
  • Irritable Bowel Syndrome (IBS) – symptoms of IBS and bowel Endo are very similar, including frequent constipation and diarrhea.  Dr. Kevin Sinervo addressed the 2013 Medical Conference hosted by The Endometriosis Foundation of America and discussed IBS and Endometriosis.  
  • Ischemic colitis – caused by an inadequate flow of oxygenated blood to the intestines, symptoms can include cramping, diarrhea, vomiting, and abdominal distension.
  • Pelvic inflammatory disease – symptoms may include abdominal pain and pain during/after intercourse.
  • Ulcerative colitis – symptoms of ulcerative colitis include an urgency to poop, diarrhea, bloody stool, and abdominal cramps.

And if this weren’t enough?  Think of the possibilities : a woman may have both Endometriosis and any of these (or other) conditions.  One does not negate the other.  And just because you have symptoms of bowel Endo doesn’t mean you have bowel Endo…

SCIENCE!

There have been several studies about bowel Endometriosis, different treatments, different surgeries, various diagnostic tools…and the fact that even post-menopausal women can develop bowel Endometriosis (with or without hormone replacement therapy).  Numerous studies!  They can be found below in the “Resources” section of this blog…scroll down.

A 2016 study followed the case of a 40-year-old woman who had a previous hysterectomy.  She was having bowel issues and a colonoscopy revealed a mass insider her rectum.  It was removed and biopsied, and diagnosed as Endometriosis.  This means it was INSIDE her bowel…The authors urge surgeons to be thorough in the removal of Endometriosis in any abdominal surgery, as recurrence an always happen, even post-hysterectomy.  They also urge patients to follow-up with any recurring symptoms.

A Jan. 2017 study offers an alternative to colorectal resection, if the situation merits it.  Rather than resecting a portion of the bowel, the authors of the study (published in Fertility & Sterility) offer a technique knows as The Rouen Technique, which removes nodules of Endometriosis found within the rectum. Of the 111 women in the study, most stated they had improved gastrointestinal quality of life.  Two of those women had a recurrence of the rectal Endometriosis within 2 years: one opted for birth control treatment and the other opted for a second excision using the Rouen Technique.  Although this study is self-admittedly weak (no control groups), you may want to print out the article and discuss this possible technique with your healthcare provider.

A Feb. 2017 study follows a 43-year-old woman who suffered from rectal bleeding and constipation.  She also had bloody stool during her periods, and burning rectal pain.She had suffered from constipation for several years and had just taken laxatives, abdominal pain, felt like she never quite cleared her bowels when she did poop, and had abdominal bloating.  Sh’d never undergone surgeries in the past, and hadn’t been diagnosed with any chronic illnesses.  The day of her visit, she didn’t have any abdominal bloating or pain, and her vitals were all normal; her rectal examination was normal.  She underwent a colonoscopy to rule out any causes of her symptoms: some of her sigmoid colon appeared red and angry, which a biopsy revealed as chronic inflammation.  She was also found to have hemorrhoids.  A second colonoscopy was performed and deeper tissue samples were taken; these newly-biopsied deeper samples were found to be Endometriosis.  A further medical history review found she had a history of Endometriosis (although how this was confirmed without any prior surgeries is beyond me).  She opted for a hysterectomy, removing both ovaries as well. Her symptoms disappeared.

A March 2017 case study was of a 58-year-old woman who suffered from chronic diarrhea and post-menopausal bleeding.  During a routine colonscopy, they found a mass extending from her rectum to her sigmoid colon.  Biopsies led the physicians to believe it to be Endometriosis.  A laparoscopy was performed, the mass was removed, as well as her uterus, cervix, Fallopian tubes, and ovaries.  Endometriosis was also found on her cervix and the tissues between her uterus and bowel.

An April 2017 letter to the editor featured in Ultrasound in Obstetrics in Gynecology focuses on using high-intensity focused ultrasound energy to burn away deep infiltrating endometriosis that has infiltrated the rectosigmoid colon.  Many of us read “ablation” or “burning” and run away, but (butt?) in some instances, it may be the best option in order to avoid a total resection.

The International Journal of Surgery Case Reports published an article in late 2017 about a 46-year-old woman who went to the hospital because she had been throwing up, was constipated, and her abdomen had been swollen for the past two days.  Physicians suspected a small bowel obstruction and confirmed it with imaging studies.  The corrective was performed that same day and they found that endometriosis deposits had strictured (pinched off, so to speak) her small bowel.  They removed the affected section of bowel and biopsy confirmed the endometriosis diagnosis.  The obstruction cleared up after surgery and she was referred to her gneycologist for further managmenet of her Endo.

In January of 2018, the Kaohsiung Journal of Medical Sciences wrote about a 43-year-old woman who had a medical history of chocolate cysts after an excision surgery and had (for the past two months) been having lower left abdominal pain and didn’t poop as much as she had been.  Her lower abdominal pain didn’t seem related to food or pooping, and she experienced bloody poop mostly during her menstrual cycle.  A physical exam of the lower left abdomen, as well as an internal exam (with a finger) were normal.  A colonoscopy found she had a mass inside her intestines.  It was surgically removed, along with a portion of her intestines, and confirmed as Endometriosis via biopsy tests.

In November of 2018, I went through my own surgery to remove Endometriosis from my bowel. It had been discovered on my small intestine at the ileocecal valve (where the small intestine meets the large intestine). I had a portion of my small intestine, my colon, my cecum, and my appendix removed. And I’m glad it did as it had created a sort of twisted mass of my guts.

A 2019 study published in Hindawi focused on a 41-year-old woman who had a medical history of painful periods and had a prior appendectomy. She went to the ER with nausea, vomiting, acute pain in her lower left torso, and had complained of weakness, fatigue, and weight loss for the last month. Her abdomen was distended and tender. A CT scan showed a mass in her cecum and a complete bowel obstruction. It also showed that her ovary was stuck to her uterus and that her bowels were inflamed. A laparotomy was performed and the cecum mass was found to also involve the ileocecal valve and caused a full blockage of her intestines. Some of her right colon (as well as the mass) were removed. The mass on her ovary was also removed. Pathology reports found that the bluish mass in her cecum blocked 90% of her ileocecal valve, her colon wall was invaded with microscopic evidence of Endometriosis, and the mass removed from the ovary was an Endometrioma. At her follow-up examination, she was symptom-free.

What Now?

If you suspect you may have Endometriosis on or near your bowel, talk to your physician.  Get the ball rolling on diagnostic tests and specialist referrals.  Have patience and an open mind…

Now, if you regularly follow my blogs, you’ll know that I was worried that I may have it on my bowel.  I’ve got the symptoms (all of them except decreased appetite, nausea, and vomiting).  They had disappeared for about a year after my excision surgery, but have since returned.   My excision op report stated, “Cul-de-sac was also obliterated and was massively adhered with adhesions from Endometriosis.”  Of course I was concerned…I visited my gyno, a GI doctor, and a colorectal surgeon to discuss. BUT…without going in surgically to confirm my suspicions, I’m taking the “wait and see” approach.  It may be Endo…it may not.  My symptoms have drastically improved since the colorectal surgeon ordered me to take fiber…so we’ll see what happens.  Each doctor understands that if I do ever go in for another excision surgery, my bowels will be a priority to thoroughly inspect for Endo.

Thanks for reading!

Yours,

Lisa

*Updated March 25, 2019*

Resources:

American Cancer Society – Signs and Symptoms of Gastrointestinal Stromal Tumors

American College of Gastroenterology Case Reports JournalPolypoid Endometriosis Presenting as Colonic Mass

BMJ Case Reports – (Abstract; April 2015) Endometriosis Masquerading as Crohn’s Disease in a Patient with Acute Small Bowel Obstruction

Centers for Disease Control and PreventionPelvic Inflammatory Disease

Centre for Advanced Reproductive EndosurgeryBowel Endometriosis

Crohn’s & Colitis Foundation of AmericaWhat is Crohn’s Disease?

Crohn’s & Colitis Foundation of AmericaWhat is Ulcerative Colitis?

Endometriosis Foundation of America – (video) When IBS is Really Endometriosis on the Bowel

Endometriosis.orgBowel Symptoms

Endometriosis UKEndometriosis and the Bowel

European Journal of Obstetrics & Gynecology and Reproductive BiologyColorectal Endometriosis and Fertility

Fertility & Sterility – (Abstract; Jan. 2017) Functional Outcomes After Disc Excision in Deep Endometriosis of the Rectum Using Transanal Staplers: A Series of 111 Consecutive Patients

Gastroenterology Research – (Article; Feb. 2017) Colonic Endometriosis: Dig Deeper for Diganosis

Harvard Health Publications Diverticulosis and diverticulitis

Hindawi – (Article; 2019) Endometriosis Mimicking a Cecum Mass with Complete Bowel Obstruction: An Infrequent Cause of Acute Abdomen

International Journal of Surgery Case Reports – (Article, Sept. 2017) A Case Report of Endometriosis Presenting as Acute Small Bowel Obstruction

JAMA Internal Medicine – (Abstract; 1995) Intestinal Endometriosis Masquerading as Common Digestive Disorders

Journal of Ultrasound in Medicine – (Abstract; March 2015) Deep Infiltrating Endometriosis of the Bowel Wall

LivestrongGastrointestinal Endometriosis Symptoms

Mount Sinai HospitalIschemic Bowel Disease

National Institute of Diabetes and Digestive and Kidney DiseasesSymptoms and Causes of Appendicitis

Nezhat.orgBowel & Bladder Endometriosis Symptoms

OBGYN.netIntestinal Endometriosis

Oxford Journals Human Reproduction – (Abstract; Nov. 2003) Preferential Infiltration of Large Bowel Endometriosis Along the Nerves of the Colon

Oxford Journals Human Reproduction – (Article; 2010) Transvaginal Ultrasonography with Bowel Preparation is Able to Predict the Number of Lesions and Rectosigmoid Layers Affected in Cases of Deep Endometriosis, Defining Surgical Strategy

Pakistan Journal of Medical Sciences – (Article; 2016) Diagnosis and Surgical Treatments of Isolated Rectal Endometriosis: Long Term Complication of Incomplete Treatment for Pelvic Endometriosis

SciElo Brazil – (Article; July 2008) Epigastric Pain Relating to Menses Can Be a Symptom of Bowel Endometriosis

Science Direct – (Abstract; Nov. 2015) Bowel Complications in Endometriosis Surgery

Science Direct – (Abstract; Jan. 2016) Computed Tomography-Based Virtual Colonoscopy in the Assessment of Bowel Endometriosis: the Surgeon’s Point of View

Science Direct – (Abstract; June 2011) Is Pouch of Douglas Obliteration a Marker of Bowel Endometriosis?

Science Direct – (Abstract; Oct. 1994) Mucosal Changes in the Large Bowel with Endometriosis: a Possible Cause of Misdiagnosis of Colitis?

Science Direct – (Abstract; Dec. 2002) Sigmoid Endometriosis in a Postmenopausal Woman

Science Direct – (Abstract; Feb. 2016) Surgical Treatment of Deep Infiltrating Rectal Endometriosis: In Favor of Less Aggressive Surgery

Society of Laparoendoscopic SurgeonsLaparoscopic Management of Intestinal Endometriosis

Springer Link – (Feb. 2016) Letter to the Editor: Recurrent Symptoms of Gastrointestinal Tract Caused by Isolated Endometriosis in a Middle-Aged Female

Springer Link – (Abstract; May 1994) Small Bowel Endometriosis Masquerading as Regional Enteritis

The Kaohsiung Journal of Medical Sciences – (Article; Jan. 2018) Endometriosis, an Unusual Case of Rectal Mass with Bloody Stool and Bowel Habit Changes

Ultrasound in Obstetrics & Gynecology – (Article; Feb. 2011) Diagnostic Accuracy of Transvaginal Ultrasound for Non-Invasive Diagnosis of Bowel Endometriosis: Systematic Review and Meta-Analysis

Ultrasound in Obstetrics & Gynecology – (Letter to Editor; April 2017) Transrectal High-Intensity Focused Ultrasound as Focal Therapy for Posterior Deep Invasive Endometriosis

US National Library of Medicine – (Article; Nov. 2014) Bowel Endometriosis: Colorectal Surgeon’s Perspective in a Multidisciplinary Surgical Team

US National Library of Medicine – (Article; Dec. 2015) Colorectal Resection in Deep Pelvic Endometriosis: Surgical Technique and Post-Operative Complications

US National Library of Medicine – (Article; May 1973) Endometriosis of the Bowel: Role of Bowel Resection, Superficial Excision and Oophorectomy in Treatment

US National Library of Medicine – (Article; Feb. 2016) Relevance of Imaging Examinations in the Surgical Planning of Patients with Bowel Endometriosis

US National Library of Medicine – (Article; April 2015) Role of Colonoscopy in the Diagnostic Work-Up of Bowel Endometriosis

Wiley Online Library – (Article; Jan. 2016) Endometriosis and Irritable Bowel Syndrome: a Dilemma for the Gynaecologist and Gastroenterologist

Wiley Online Library – (Abstract; April 2015) Small Bowel Obstruction Caused by Endometriosis in a Postmenopausal Woman

~ 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