An EndoSister shared a page with me describing a new clinical trial for women suffering with Endometriosis pain. It’s a vaginal ring that delivers *some type* of medication. There wasn’t much information on the site about what type of medication…
If you’re interested in seeing if you qualify for the clinical trial, you can submit your application by answering a few questions on ResearchMyEndo’s site. Once you’re talking to a representative, be sure to ask questions like what type of medication is it (pain medication? GnRH agonist? GnRH antagonist? potential side effects? options to leave the study, etc.) AND (most importantly), you may not want to read any further of this blog entry because I don’t want to reduce your chances of being accepted if researching the product is a disqualifying factor.
I will never tell you what to do, or not to do. The decision to participate in a clinical trial is wholly yours. It may help your symptoms. There’s always a risk with clinical trials…who knows what side effects await you. BUT…it’s a personal decision. Don’t make it lightly – but do feel free to make the decision that is right for you.
A domain owner search of ResearchMyEndo’s site simply shows that the domain is owned by GoDaddy and was purchased in April of 2019. So, I can’t actually snoop around to see what pharmaceutical company, if any, has sponsored the site…
The ONLY clinical trials currently recruiting I could find dealing with a vaginal ring and Endometriosis involved Ferring Pharmaceuticals and a drug known as Quinagolide. In the past, there were studies using vaginal rings to deliver leuprolide (yep…good ol’ Lupron) and Danazol.
Quinagolide is a “non-ergot-derived selective dopamine D2 receptor agonist” used to treat elevated levels of prolactin (a hormone secreted by the pituitary gland). Prolactin has been shown to have over 300 functions in the body, including the “reproductive, metabolic, regulation of fluids (osmoregulation), regulation of the immune system (immunoregulation) and behavioural functions.”
According to Drugbank, the most common side effects of Quinagolide use include “nausea, vomiting, headache, dizziness and fatigue that usually appear in the beginning of initial therapy. Less frequent side effects (1 to 10%) include anorexia, abdominal pain, constipation or diarrhoea, insomnia, oedema, flushing, nasal congestion and hypotension. Orthostatic hypotension may result in faintness or syncope.”
According to Google Patents (filed by Ferring Pharmaceuticals), a pilot study was conducted of nine women to test Quinagolide in humans. The women had several of their Endometriosis lesions removed and biopsied, and additional lesions were left inside their bodies but marked with a silk knot and photographed. One week after surgery, these women began treating with Quinagoilde orally for four months and underwent exploratory surgery again. The marked areas were excised and biopsied (any adhesions were also removed). The surgeons who performed the laparoscopies believes the treatment significantly reduced the severity of Endometriosis in the patients. The study boasts that “the quinagolide treatment induced a 68% reduction in size with 35% lesions vanishing after 18-20 weeks treatment…The quinagolide may significantly decrease the blood vessels (vascularisation) in the endometrioic lesions; indicating increased tissue degeneration and hence reduction of the endometriotic tissue on a microscopic scale.”
On to the clinical trials (if you can’t tell, click on the trial title to be directed to their Clinical Trial page for more info):
First posted in October of 2018, the purpose of this study is to test the efficacy of quinagolide (aka Norprolac) being released via a vaginal ring in the hopes of treating moderate to severe Endometriosis-related pain. Some participants will receive a placebo treatment. The sponsor of this study is Ferring Pharmaceuticals, who acquired worldwide manufacturing, marketing and distribution rights of Norprolac back in 2004.
It’s estimated this study will be concluded by April 2022. It’s recruiting now. You can contact Global Clinical Compliance for more information. They are currently recruiting in Arkansas, California, Florida, Illinois, Iowa, Louisiana, North Carolina, Pennsylvania, Texas, and Virginia.
This study is not yet recruiting. It is again sponsored by Ferring Pharmaceuticals and will investigate the effectiveness of the quinagolide ring to reduce lesion size (assessed by MRI) in women with Endometriosis, deep infiltrating Endometriosis, and/or adenomyosis. It is expected to start recruiting participants in June of 2019 and complete in December of 2020.
You can contact Global Clinical Compliance for more information. It appears they will be recruiting in Denmark, Germany, Italy, and Spain.
Again, I have no way of verifying if the trials I found are related to the trial offered on ResearchmyEndo. But…be sure to ask questions and only do what you feel is right for you.
Before I close, I do want to point out an area of frustration for me: ResearchmyEndo’s definition of Endometriosis (I snapped a screenshot and highlighted it for you)…Not only does it (wrongfully) identify Endometriosis as the lining of the uterus (it’s SIMILAR, but not the same), BUT they severely downplay the seriousness and severity of recovery of a laparoscopy. And I specifically despise the fact that the surgeon will “sometimes remove endometriosis tissue.” UGH! Crappy definition. And sub-par care! Meh…
Clinical Trials – Randomized Trial Assessing Quinagolide Vaginal Ring for Endometriosis-Related Pain (RAQUEL)
Clinical Trials – Quinagolide Vaginal Ring on Lesion Reduction Assessed by MRI in Women with Endometriosis/Adenomyosis (QLARITY)
~ 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
May was a fun one. I was curious if I’d skip yet another period. OR if having skipped my April period would lead to a hellish May visit from Aunt Flow.
As you can see, I was pleasantly surprised! My period cramps never got above a 2 out of 10! My lower back pain was intermittent on my period at a low 1 out of 10. And I did receive a twinge of pain when I coughed on my period, toward the lower right abdomen area. I only took two over-the-counter Ibuprofen for my mild period cramps and back discomfort on the first day of my period. I had to remind myself, “Why suffer with this pain?” And they killed the remaining discomfort and cramps. TWO IBUPROFEN!
My other pain during May while NOT on my period?
May 8th: I woke up at 6:30am with mild lower abdomen cramps, a 1 out of 10. Nothing to be concerned about, but something to note. It only lasted a few minutes; and I wondered if it was gas or poo-related.
May 9th: I did it again; I ate too much. A buffalo bacon cheeseburger AND onion rings? I mean, I didn’t finish them…but I most certainly should have stopped eating sooner. This led to discomfort at my staples, 2 out of 10.
May 10th: an odd, burning type of discomfort near my staples that lasted a few minutes, 3 out of 10. About an hour later, it was a quick series of diarrhea and poops; so I figure that discomfort was most certainly poo-related.
May 12th: I woke up with mild discomfort at my staples; likely related to the night before’s angry bowels…
May 13th: this was a new one: a weird discomfort in the area between my belly button and my lower ribs. Similar to the location of my pre-surgery pain, so of course I quirked an eyebrow and monitored this one with extra vigilance. The discomfort was only a 2/10. And didn’t lead to a big poo or anything horrible. It didn’t last long, either.
May 14th: a repeat of that throbbing discomfort between my belly button and lower right ribs; it was a 3 out of 10 and lasted several minutes when I woke up. It occurred again that afternoon. It happened again twice more that afternoon…and I found the trigger. CHERRIES! By going through my food journal and timestamps, I realized it MIGHT be cherries causing me some type of gas pain. So…I stopped eating cherries…
May 22nd: I, again, ate too much. It was yellow curry with chicken; I mean, how can you NOT eat to much? Well, I haven’t learned my lesson and received my usual staple discomfort, 3/10.
And my May poos? ZERO PAIN the entire month. No glass being dragged through my guts. No cramps while I poo. No need to bend over in two and cry while sitting on the porcelain throne.
May 7th holds the record for the most poos in a day: seven and two bouts of diarrhea! SEVEN!?! I hadn’t poo’d well the day before…and this was just my body’s way of suddenly purging all the leftover crap that was still in my guts! Seven…I was exhausted that day. LOL
What were the lessons I learned in May? 1) STOP EATING TOO MUCH! Just take your time, eat slowly, give your body time to adjust to the volume of food, and STOP EATING. Push the plate away, drop the fork, get a doggy bag. 2) My body’s not ready for two drinks a day. It may not lead to that agonizing pain I had in January…but it leads to some poopy issues. 😉 Just leave it to one drink…
If you’d like to read my day-by-day play-by-play May pain and food journal, please check it out below:
If you’d like to see my Poo Chart, please check it out below:
I don’t know about you…but even after my surgeries and recoveries, sex can still be painful with deep vaginal penetration; mainly when my husband boinks up near my cervix.
Sometimes it’s enough to knock the wind out of my sails and we have to stop.
Why does it hurt? It could be related to Endometriosis or adhesions. But it’s more likely due to my abnormal anatomy: I have two cervix, side by side. Deep sex has always been painful to me; I only learned it was abnormal after my Endometriosis diagnosis! We’ve adjusted our sexual positions and found several that are doable without deep penetration…but…let’s be honest: I miss some of the many positions we can no longer do.
But there’s hope!
Have you heard of the Ohnut? It’s relatively new and was specifically made to help with that sort of deep-penetration pain. It’s like a sleeve/barrier that wraps around the penis (I can’t type that out without snickering….) and prevents total penetration. It’s customizable in length, too, if not 100% of the device is needed.
I received ours today! It retails for about $70, but we budgeted it into our finances and hope it’s worth every penny. I’m grateful my husband is willing to give this device a try; a lot of the online reviews from men were positive. Many said they couldn’t feel a difference or didn’t feel like they were being robbed of the experience. And we both look forward to trying it out (insert sheepish grin here).
Expect a review hopefully on the coming weeks. Coming? There’s a pun in there somewhere …
I am continuously amazed at the strength of those I know: friends who have been through so much pain and trauma, yet continue to find the positive. Find the strength to move on. Have the stamina to embrace and help those in need.
Today’s quote is for you strong ones. You broken ones who continue to lift your head up and continue life, one step at a time.
“The sun shall always rise upon a new day and there shall always be a rose garden within me. Yes, there is a part of me that is broken, but my broken soil gives way to my wild roses.” ― C. JoyBell C.
In Tombstone, Arizona there is the “world’s largest rose tree.” It was planted back in 1885. And it’s something I grew up visiting often. A gigantic mass of twisted, thorny, beautiful roses. HUGE. It blooms wildly for a few short weeks in the spring, before the desert heat takes over. May we be a conglomeration of rose bushes together, deeply rooted within one another, holding each other up when needed. May we be a continuous reminder of our strength, beauty, and worth; even during the hot summer months of our lives.
Have a beautiful weekend.
And if you ever do make it to Tombstone to visit this beauty, stay at the Larian Motel! Say hi to the gal behind the front desk for me. ❤
Our friends at the Endometriosis Family Support Group will be hosting a free screening of the EndoWhat? documentary with a live chat room so participants can discuss the film as they watch it together!
Want to attend? It’s going to be on Thursday, May 30, 2019, at 6:00pm PST. You must register online to get access to the webinar. Register now before you forget!
I started mine off my locking my keys in my Jeep. Ha! A great way to start a holiday weekend. 🙂 So, I calmly called AAA and waited for their tow truck driver to swing on by. 15 minutes later (and a lot of frustrated grunting from the driver) and my vehicle was opened and I was reunited with my precious keys.
How’s your day goin’?
Today’s rocky start led me to today’s quote. May it give you a bit of peace and insight, too:
“Maybe it’s not about having a beautiful day, but about finding beautiful moments. Maybe a whole day is just too much to ask. I could choose to believe that in every day, in all things, no matter how dark and ugly, there are shards of beauty if I look for them.” ― Anna White, Mended: Thoughts on Life, Love, and Leaps of Faith
May you have a wonderful weekend, regardless of what’s going on. But if you do need someone to talk to, you know I’m right here for you.
Blogs I Updated This Week:
Bladder & Endometriosis: added a May 2019 study of a 40-year-old woman who suffered from two years of right flank pain. After several tests and imaging studies, she was found to have an Endometriosis lesion inside her right ureter.
It’s a tattoo on my back. It’s the state motto of Kansas. It’s engraved on a plague at the Apollo 1 launch site, honoring those who fell. It’s used on Pall Mall cigarette packages.
What the heck is it and what does it have to do with Endometriosis???
“Ad astra per aspera.”
Many years ago (yes, before my Endo diagnosis), a friend helped me find myself once more. I had been lost and floundering and he pulled me out of a deep, dark pit. He came to visit for the weekend to make sure I was okay. Before he left, he wanted to make sure I remembered our long talks, our soul searching, and our discoveries.
It was to be memorialized in a tattoo. The only condition was whatever phrase we both chose, it had to be in Latin. So we scoured the internet for our independent phrases. And I found this one: Ad astra per aspera.
I’d seen it translated in two ways:
To the stars through difficulty; and,
Through thorns to the stars.
And I knew I had to have it.
When I was a little girl, I was molested by my grandfather on numerous occasions. While going through counseling as a young teenager, my counselor would have me draw and she’d analyze my drawings. One day, I drew a rose growing out of a fly-covered pile of poop. She reminded me that something beautiful could grow out of the worst, most disgusting, conditions. And that I was the rose.
The phrase reminded me of that rose. It encompassed my sexual abuse, my divorce, my losing myself. I could – no – I WOULD rise up. Through thorns to the stars!
And every time someone asks me about that tattoo, I have a renewed sense of strength. I can, and I will, rise to the stars.
And it’s made moreso relevant because of my Endo diagnosis. Through thorns, through difficulty, through a fly-covered pile of shit – we continue to reach up toward the heavens, the stars, to beauty and vast possibilities. Yes; that means you, too.
You are beautiful. You will endure. And you will flourish.
Always remember that.
…and to that friend from many moons ago, thank you. You know who you are…
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.
I hope you all had a wonderful week! Mine has had wonderful ups and laughable downs, but here we sit at the end of the week! Happy Friday!!!
Today I’m inspired by the tenacity of my fellow EndoWarriors. Women who have been handed a nasty hand of cards, yet continue to move forward, stand tall, and are not afraid to reach out for help or comfort when needed. Even on the downer days, wrapped up in a heating pad, popping pain medications, rubbin’ on CBD oil, or crying in a ball on the floor: that inner strength remains.
We lift one another up. Hold each other when we’re down. Fight for one another when the cause arises. We are a sisterhood. An army. A mighty force. We are incredible. And moreso with the bonds we’ve forged.
Dungeons & Dragons & Donuts: Added our January 20, 2019, adventure (Sorry we’re a little behind…). Find out how tabletop gaming can help people deal with a chronic illness, forge friendships, and disappear into a fantasy realm for a few hours once a month.
Endometriosis & the Lungs: Added a May 2019 publication of a woman who suffered from recurrent collapsed lungs NOT during her period; yet received a surgical diagnosis of thoracic endometriosis. Your symptoms do NOT have to coincide with your period. Also added another May 2019 publication of a woman who suffered repeat collapsed lungs during her period.