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.
One thought on “Share Your Story: Zoe”
Stay strong. Thank you for sharing. I was diagnosed with Interstitial Cystitis in 1995.