Free Endo Webinar: Dr. Leslie Wakefield

Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Are you available to attend a webinar on Thursday, June 27, 2019, at 1:00pm (Pacific Standard Time). Join them for the free online webinar featuring Dr. Leslie Wakefield. Dr. Wakefield will be discussing how how physical therapy can treat Endometriosis symptoms.

Registration is free, but is required. So sign up today!

A huge thank you to the Endometriosis Family Support Group for all that they do!

SAVE THE DATE! 2020 Bloomin’ Uterus Endo Walk

2019 Bloomin' Uterus Endometriosis Awareness Walk
2019 Bloomin’ Uterus Endo Awareness & Support Walk; photo by Richard T. Reyes

Save the date!

The Worldwide EndoMarch announced Saturday, March 28, 2020 as the date for next year’s walk. And although we aren’t affiliated with their march, we do like to have it on the same day.

Solidarity!

So, save the date: Saturday, March 28, 2020

Further details to follow.

…let the planning begin!

Feel Good Fridays

Back of Lisa's Endometriosis Journey tank top which shows each year of surgery and where endo was found
Back of shirt

As is my customary Friday morning tradition, I found myself back at my favorite bagel place for my breakfast and an almond milk hot chocolate. As I waited for my wares, I noticed a woman waiting in line eyeballing the front of my shirt.

If you haven’t seen the front, it’s a wonderful design, created by a friend, representing my insides after my Endo surgeries. Ha.

Front of tank top showing fun cartoon of uterus, no fallopian tubes, and a resected intestine
Front of shirt

Once she paid for her bagels, she walked right up to me with a big smile.

“I was standing in line reading the back of your shirt,” she said. “So then I had to try to read the front of your shirt to see what it is.”

“Oh?” I prodded.

“You’ve had quite the ride,” she said, with a li’l bit of sadness in her voice.

“It sure has been.”

“I’m familiar with the disease…” she said, leaving it open-ended.

Familiar? Did she have it? Does her daughter??? She looked to be in her sixties. “Are you?” I prodded further. “Do you have it?”

“No,” she smiled, “but I’m an OB nurse.”

We talked for a little while longer while we both waited for our bagel sandwiches and beverages. She seemed surprised at how extensive it could be, how entwined it can get, and how often my surgeries were warranted. I let her know that my pain levels were in a good place since my last one. She placed a warm hand on my shoulder, “I hope it stays that way.” And we said our goodbyes.

Such a wonderful way to start a Friday. And now? On to today’s Feel Good Friday’s quote:

“Finding healthy coping mechanisms are as essential as breathing fresh air

Find what works for you.

Do it with zest and fervor 

Unapologetically” 

― Renee A. Lee

For me, striking up conversations, spreading awareness about Endo, and making connections is a huge part of my coping mechanism and self-administered therapy. That being said, I know it’s not for everyone. What helps you cope? Let me know in the comments below!

I hope you have a wonderful weekend.

Love, Lisa

Blogs I Updated This Week:

Endo & Liver Function: added a 2019 study of a 42-year-old woman who complained of right quadrant pain, vomiting, and nausea. Turns out she had the super-rare Endo on the liver!

Share Your Story: Jenny12

quote that reads I have always had heavy, painful periods since age 9.

“Jenny12” is a 39-year-old woman living in New York. Officially diagnosed with Endometriosis five years ago, she shares her journey with us today.

Jenny12’s Journey:

I have always had heavy, painful periods since age 9. After many OBGYN’s trying different B.C. I finally had my first lap surgery 5 years ago, and was told stage IV with some adhesions on bowels that were unable to be excised. Did not really help with the pain with my periods, so I was then given Mirena, that was a huge mistake.

As a result the Mirena embedded in the wall, and once removed, I bled for 2 months straight, and a walnut sized tumor grew. I then had an ablation done (Sept 2017) to remove the tumor to try and control the bleeding. I was okay for about 1 month, and the tumor started to grow back. I then had a full hysterectomy (May 2018).

I was okay for about 5 months, and then the pain in stomach (so horrible) I went for a endoscopy, and the Gastro Dr. believes I have endo on the duodenum, as there was tons of food at the bottom of my stomach after a 20 hour fast, so slow digestions when the endo is inflamed in that area.

I am also having pain at 3 of the port sights where during the hysterectomy instruments were used, and I am being told by the OBGYN they believe this pain and swelling is because I have endo in the scar tissue, and the only fix is surgery to remove the scar tissue at the sites, and there is no guarantee that I will not have more endo in the new incisions?

I now have to track the pain, so I know when the cycle is, and account for a soft food diet, easily digestible when it comes, as to minimize the pain. And as for the incision pain, I have been told to try PT for abdominal stretching, and pelvic floor exercises before scheduling more surgery. NEVER ENDS. I have not been able to find any info. on endo on the duodenum? Thanks.

If you would like to reach out to Jenny12, send her an email!

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I want to send a special Thank You out to Jenny12 for being brave enough to share her personal story, struggle, and journey with us today. I’ll be doing some research for Endo no the duodenum and keep you posted! And we’re all hoping you’re able to find further answers and relief!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: RDS

blonde woman laying on couch clutching lower abdomen in pain.  Photo courtesy of USDA blog
Original photo courtesy of USDA; re-edited by Lisa Howard

RDS is a 40-year-old woman living in Turkey, struggling to find answers and the medical care she needs.

RDS’S Journey:

I have had issues with my lower abdomen for years. It was always worse during my periods. Three weeks ago a new pain came on my right hand side. I thought it might be appendicitis, so I went to the emergency department. The doctor’s first performed an ultrasound, but couldn’t get a good view of the appendix. It was agony them pushing and searching for the appendix. In actual fact the appendix was behind the ovaries. Because the pain was intense they suspected appendicitis and performed a laparoscopic appendectomy.

Whilst operating however they discovered the reason why they couldn’t get a good view of my appendix: It was literally stuck to the right ovary. They said only the end of the appendix was inflamed and there was something around my ovaries. They cleaned that up, consulted a gynecologist, removed the appendix, then stitched me up.

I wish my Turkish was better to understand what was around the ovaries but I highly suspect endometriosis. The doctor’s did not give me any other advice ( it was a public hospital. In and out like a conveyor belt) and I was sent home. But I’m still getting pain and I think a gynecologist is the next point of call.

Our Response to RDS:

Hi RDS! I don’t have your email or a way to get in touch with you, so I hope that you can find this blog entry.

If you do find this, please email me. My gynecologist and excision surgeon is here in the United States, but he’s from Turkey. Perhaps I can ask him for any recommendations of where you might go to seek the medical care you need.

*

I want to send a special Thank You out to RDS for being brave enough to share her personal story, struggle, and journey with us today. We wish you all the best in seeking your medical care and answers. And will be praying for you.

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.



Share Your Story: BMW

photos of Endosister, BMW

BMW has asked that I share her Endometriosis journey with you today. She was diagnosed when she was 13 years old and is now 32. We live in the same area, so I look forward to getting to know her better!

BMW’s JOURNEY: 

Where to begin… As I lay curled up in the fetal position holding my stomach with one hand typing with the other. I find myself just wanting to talk to someone anyone… Wait no not anyone someone who understands. I’m in pain.

And not take a ibuprofen and lay down pain. But mental and physical anguish.

I deserve an Oscar, an Emmy, shoot I’ll take a Tony. Every last one of us who fake it. No not sex but like we deserve a kindness award for not breaking balls when it comes to that. But fake being fine. Fake that smile of “I’m fine” when in reality we are not. Hollywood has nothing on us!!

I was diagnosed with this unwanted guest at 13. My father died a year before from cancer. Before I was diagnosed I was in and out of the hospital. My mother was told numerous times that my pain was in my head. I was lucky though my mother had suffered the same pain prior to having me. She fought for me! She didn’t care how many doctors said it was nothing she knew it was real. I on the other hand began to think I was crazy. I mean they are doctors they know stuff. I was 13 what else was I suppose to think. My first surgery was at 14. I was on my period and in pain but they did the procedure. They found the pot of gold or pot of never ending poop,  depends on who you ask.

Even after being diagnosed I was informed that I didn’t look or act sick. When I heard this I always wondered what does Endo sick look like? My Dad worked with last stage cancer. We didn’t find out until it had spread everywhere almost. He didn’t “act” sick. But I was told if I wanted doctors to believe me I had to look the part.

I had one issue: how do you look like you want to rip your own insides out. I did end up acting though I began to act “fine” I thought if I could pretend hard enough the pain would stop. Or at least everyone but my mother would stop looking at me like I was a drama queen when I said I hurt. I was put on birth control at 14. It gave me menopause symptoms. Night sweats, heat flashes, you name it I had it. So they changed my meds to the birth control shot. And boom no more periods. But now I was depressed and scared because I was still in pain. So they gave me two types of antidepressants. Which gave me suicidal thoughts and ended up with me being locked up for about two weeks in a mental ward. So in roughly two years I lost my dad, I lost my mind, and I lost myself. I began letting Endo control me.

At 15 I had my second surgery because I was still having pain. The doctor informed me and my mother that the Endo had spread “everywhere”?!? I was not sure what that meant. He showed us photos pointing out red dots and saying that it was endometriosis. My pain was cause by a dot was all I could think. He informed us that there was nothing he could do. He put me back on the shot. He did mention the pregnancy might help with the pain. Yep he told a 15 year old girl that having a baby might help. Needless to say my mom was quite pissed. He smoothed it over by informing her that I most likely would never be able to have kids.

I was sitting right there.

He said it so casual, I cried when I got home my mom reassured me that 1.That the doctor was an ass. 2. Nothing is written in stone. I, in return, pretended to be fine.

Endometriosis had just shoved me in the locker and dared me to tell someone. By sixteen I was mentally drained I had two laps, many different meds I put on antidepressants and topamax. And I started dating. I wanted to be normal and I was for the most part. At 16 I honed faking it. I became a flake because I didn’t want to tell anyone I was in to much pain to go out. I sucked it up and pretended if my boyfriend so me in pain I played it off. Because “No guy wants a sick girl” yep someone told teen me that. I felt so small I didn’t want to be sick. I wanted to be okay, I wanted to do what my friends did and not pop ibuprofen like candy to attempt to get through a day.

But I wasn’t okay but again I pretended. Endo was pushing me around and I was letting it. I stayed on the shot for seven years. After getting off I didn’t have my a period til two years after I stopped the shot. Then bang the pain increased. So they gave me the ring. I was 23 Great I thought I just have to keep one up there at all times.

I got married at 23 and moved cross country my husband is in the military. Still pretending I was fine. I stopped telling doctors I was in pain. One told me I had to have a period to clean myself out. (Yea, sounds real stupid right?) So I believed him I did it and by the third month I couldn’t get out of bed. I was alone in Washington State I knew nobody. My husband was on deployment. I was in so much pain I had to crawl to the bathroom I couldn’t make it to the kitchen at all .I was pretty sure I was dying or an alien was gonna jump from my stomach. By day four of only eating crackers that I had in my room and drinking water from the faucet in the tub because I couldn’t stand at the bathroom sink. The alien jumping out of my stomach started to sound good. I was terrified but I never said a word not to my husband in emails. Not to my mom in phone calls not even to my friends in phone calls. I would tell them I didn’t feel “well”. I acted as if the pain hadn’t changed.

When I did inform a female doctor of the horror I had gone through, she assured me it was normal sometimes females have”bad” periods. I tried to explain but swallowed my voice maybe I was overreacting. Endo had taken my voice again. Maybe it wasn’t “that bad”.

Looking back I could slap me! It was bad; it hurt inside and out. But I remained silent.

I got a new doctor who told after I explained to him my pain that I only needed to have a period to have a kid. And since I wasn’t trying to at 24. I could keep the ring in. So I did and life went on and so did I. I worked and cried in the bathroom when the pain got bad. I pushed through I had to I wasn’t gonna be weak.

Who wants a sick wife, friend, co-worker, employee. Nobody.

So I still let the pain bully me into silence. At 30 me and my husband decided to try for a baby. I removed my ring. And all hell broke loose! From period anxiety to bleeding bellybuttons. My symptoms are worse. And it’s scary doctors still don’t listen.

But I’m not going to be quiet anymore.

I lapse into faking it from time to time. But in all honesty I’m tired of being in pain. I’m tired of remaining silent because people might look at me strange. The hell with them!

I spent the majority of this illness blaming me. Hiding scared and alone. Not because I was actually alone but because I was ashamed of being in pain. Ashamed of being scared and looked at as weak or not good enough. Or seen as over dramatic. I will be damned if my nieces or God willing my daughter goes through what I went through. Nope!!!

Somebody is going to listen to me.

Words of Advice:

Don’t remain silent! Don’t let anyone make you feel crazy or less than because your in pain. You are more than your pain if you wanna cry. Then cry, scream , yell. Just don’t let the bully win.

If you would like to reach out to BMW, you can email her directly.

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I want to send a special Thank You out to BMW for being brave enough to share her personal story, struggle, and strength with us today.  We are so glad you will no longer remain silent!!!

Memo that reads "Tell your story"

And if YOU would like to share your story, please submit it to me.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Feel Good Fridays

Thunderstorm clouds on the horizon
photo by Kevin, Colorado Clouds Blog

Here we are again! A Friday! Already!!!

Earlier this week I was in a little Facebook chat bubble with one of my local EndoWarriors, Heidi. Heidi has been a HUGE part of my life since we came together and she’s a very active member of our Bloomin’ Uterus San Diego support network. She also hosts supoprt group meetings and events at her house, finds time to run our Instagram account, and is such a strong source of strength and encouragement to our Sisters! Thanks Heidi! FOR EVERYTHING!

I’ve been relishing the mostly pain-free life since my November surgery. And every little tiny prick of pain sends me deep into a “Oh no, is it coming back already?” thought process. The poor April ultrasound results don’t help and I’m eagerly awaiting the July follow-up ultrasound.

But, I ran to Heidi and we had a little conversation yesterday during a moment of doubt. Heidi has had some glorious results from pain management and physical therapy and I figured she may very know the fear I was feeling:

Text conversation with Heidi.  Me: "Do you almost fear all the shit just coming back and rendering you incapable gain?  I do." Heidi: "Oh man, yes hunny!  Every twinge of back pain makes me think it's coming back again.  It's this stormy cloud just over the horizon that's taunting me. I'm so grateful for where I'm at & I just have to remember how hard I fought to be here, & try to enjoy each moment.  We got this, & we're beasts."

See? SUPPORTIVE! Heidi is amazing. And, she’s right: WE GOT THIS AND WE’RE BEASTS!

But yesterday’s moment has led to today’s quote search. It captures the fear I have. It gives it a visual that many people can relate to; a fear that gnaws at the fiber of their being. I suffer from a painful chronic illness, and although I’m in a wonderful position right now, I still have these fears:

“That’s the point. This healthy-feeling time now just feels like a tease. Like I’m in this holding pattern, flying in smooth circles within sight of the airport, in super-comfortable first class. But I can’t enjoy the in-flight movie or free chocolate chip cookies because I know that before the airport is able to make room for us, the plane is going to run out of fuel, and we’re going to crash-land into a fiery, agonizing death.” 
― Jessica Verdi, My Life After Now

Okay, so it might be a little dramatic…but it really captured how I feel about this relentless disease. Endometriosis.

I have my Sisters, my Warriors, my Family to get me through these moments. I’ll enjoy the in-flight movie and complimentary cookies. I’ve embraced having my nights and weekends back to enjoy. And maybe…just maybe…I can acknowledge these fears when they bubble to the surface and let them go.

May we all be able to do such a thing.

Love, Lisa

PS – Heidi, I love you so very, very, very much.

An Evening with Dr. Kurtulus

Flyer for Living with Endometriosis presentation.

On June 5, 2019, the Marine Corps Community Exceptional Family Member’s Program hosted Dr. Mel Kurtulus of San Diego Women’s Health (my excision surgeon!) and I for a discussion about Endometriosis. I am so grateful to Dr. Kurtulus for setting aside time from his busy schedule, sharing his personal time with us, and to the members and crew of the Exceptional Family Member’s Program for allowing he and I this opportunity.

There were about a dozen folks who attended the nearly two-hour meeting at the Marine Corps Recruit Depot in San Diego. We all sat near one another, including Dr. Kurtulus, in a very casual and intimate learning experience.

Dr. Kurtulus began with an explanation about what is known about Endometriosis, covered a few theories of the illness, the various stages of the disease, and how it affects each woman differently.

A physician’s suspicion of Endometriosis may be raised by a complete medical and symptom history. A physical examination may take place, in which the doctor may feel scar tissue, abnormalities, or even nodules. An ultrasound may also be ordered, which could show the presence of cysts, Endometriomas, and misplaced ovaries (or other organs). These may further bolster a clinical diagnosis of Endometriosis. Some physicians may follow-up the ultrasound with an MRI, which may (or may not) further strengthen such suspicions. Those results, however, may be skewed because of the skill level of the radiologist; if they don’t know what they’re looking for Endometriosis-wise, the scans may appear normal. And…imaging studies don’t always indicate the presence of Endometriosis.

If a clinical diagnosis of Endometriosis is even remotely suspected by a physician, an exploratory laparoscopy should be conducted. It’s the ONLY way to receive a diagnosis.

But, as you very well may know, not all doctors are equally skilled. It is SO VERY IMPORTANT that we, as patients, do our research, due diligence, and everything we can to ensure we receive the BEST medical care we can. Unfortunately, we have to be our own advocates.

Although laparoscopy surgeries are considered far easier to recover from, a lot of surgeons around still do the ol’ laparotomy method. Tiny incisions versus a big ol’ incision? Think of the healing process and risk of infection differences. I know that, in some cases, a laparotomy may be medically required in extreme cases, but unless you’re one of those extreme cases: JUST SAY NO TO LAPAROTOMY. Why?

I took a little visit to the Wikipedia Time Machine this morning:

  • 1809: the first successful laparotomy was performed without anesthesia;
  • 1910: laparoscopy was first used on human subjects (on dogs in 1901);
  • 2000: the DaVinci robotic-assisted laparoscopy was approved by the FDA.

With the advancement of medicine and technology during the 210 years since the laparotomy was invented, why in the world would you choose a physician who ignored the laparoscopic or robotic-assisted laparoscopic methods? (Again, unless you specifically had an extreme medical case that required a laparotomy.) I’m forever going to imagine surgeons who elect to do laparotomy over the more modern surgeries available as wearing chaps and a cowboy hat.

And if you can, the benefits of a robotic-assisted laparoscopy may be what you seek: surgical tools with 360-degree articulation, the use of Firefly® Fluorescence Imaging, and the added bonus of insane magnification of the visual field. There are also exciting prospects on the horizon of using AR (augmented reality) and dyes during robotic-assisted surgeries to help surgeons visualize hard-to-spot areas of the body. Ask your doctors all the questions. Find one that does the method you prefer. I’ve only had robotic-assisted laparoscopies…so I cannot compare results. But I’ve been told by many people that my recoveries were faster and scars were much smaller.

Some surgeons only do ablation. Some do ablation and excision. Some only excise the lesions. Some say they excise when they, in fact, truly ablate. Excision surgery is considered the gold standard for treating the disease. Dr. Kurtulus drew some great visual aids for us, demonstrating the iceberg effect some Endometriosis lesions may present. He also shared video footage of a recent surgery where he excised both surface Endo and deep infiltrating Endo using the robotic-assisted DaVinci method. Again, ask your doctor questions. What techniques do they use and why?

Also, it’s important that you seek copies of your operation report AND pathology report. IF there is NO pathology report, question why! Does that mean they simply burned away the lesions and there was no physical lesion to send in to biopsy? Last night we learned that not all lesions ARE Endometriosis, and it’s important to know the results of the surgical pathology.

Surgery may not be an option you wish to pursue. Or it may not be something your body can handle. Now what? What other options are available to you? Well, your physician may try out various painkillers to see which may help you. Ibuprofen, Midol, Tylenol, Naproxen Sodium? Those don’t work? Your doctor may move up to others such as Vicodin, Percocet, Tramadol, etc. But with the opioid crisis…they may not. The pain pills may help…or may not.

They may have you try birth control pills, an IUD, implant, or depo provera. Stopping, or controlling, your periods may help with your symptoms. Then again, it may not. And there’s a likelihood of side effects.

Other pharmaceutical options may include Lupron Depot, Orilissa, Letrozole, Danazol, etc. GnRH agonists, GnRH antagonists, or other drugs that affect the body’s production of chemicals, or how they respond to estrogen, etc. – many of these have side effects that might be unbearable to some – and many may only be taken for a limited amount of time. And these medications may, or may not, help with your Endometriosis symptoms.

Many of us EndoSisters refer to medications as band-aid fixes. They mask symptoms. But sometimes ANY relief from your pain and symptoms is good relief. Every person is different; the choice is yours. Don’t be bullied into a decision by your doctor.

We also briefly discussed lifestyle changes and alternative medicine: an anti-inflammatory diet, acupuncture, pelvic floor therapy, meditation, pain management, CBD oils, etc. Find what works best for you. And the need for finding support, with any illness, was highly recommended.

The evening was brought to a close with the sound of Taps playing in the distance somewhere on the military base. Contact info was exchanged, as were hugs. And the promise to do this again sometime was made.

Here are some key points I took out of last night’s event:

  • Never be afraid to ask your physician/OBGYN/surgeon questions about their practice, techniques, and beliefs. 
  • If the surgeon only does laparotomy surgery (and you are not an extreme case that requires it), find another doctor. Find one who dose either laparoscopy or robotic-assisted laparoscopy. Without the extreme medical need, there is no reason to undergo the laparotomy procedure of literally the early-1800s…
  • If the surgeon only does ablation/cauterization/burn away the lesions: find another doctor.
  • If the surgeon usually only does ablation/cauterization/burn away the lesions, but will excise “for your case,”: find another doctor. They’re likely not skilled enough to properly and thoroughly remove all of your endo.
  • If your doctor insists you use drugs before they’ll even consider surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), find a different doctor.
  • If your INSURANCE insists you use drugs before they’ll approve surgery (i.e, Lupron Depot, Orilissa, Letrozole, etc.), BUT your doctor wants to do surgery; ask your physician to push for a peer-to-peer review with the insurance company. Your doctor will have to justify why your surgery is medically necessary as opposed to treating with the medications. There may be a fight ahead.
  • Seek alternative treatments such as acupuncture, nutritionist consults, pelvic floor therapy, meditation, etc. Every little change we can do may affect our well-being.
  • It will be nearly impossible for the great surgeons to affect the medical community around them. Doctors are set in their ways; may lack the time to go to proper training; and may pursue more cost-effective/timely methods (ablation vs excision, etc). It is up to us, the patients, to research our physicians, find ones that are well-suited to our needs, and pursue our own proper care.
  • Track your pain and symptoms, and discuss those findings with your doctor. Bring a copy for them to review and keep; and a copy for yourself to review with them. Thoroughly cover all areas of concern.
  • Find support. Lean on one another. Ask questions. Share experiences. Know you’re not alone.

And most importantly? Each and every one of us has the power to influence those around us. Spread awareness. Share stories. Speak up about your illness. Fight for better care. Teach your doctors…some WILL learn. And learn from your doctors.

Cause ripples.

Again, I am so very, very, very grateful for an incredibly informative and uplifting evening.

New Clinical Trial for Endometriosis Pain

Icon of doctor and patient for clinical trial

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):

Randomized Trial Assessing Quinagolide Vaginal Ring for Endometriosis-Related Pain

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.

Quinagolide Vaginal Ring on Lesion Reduction Assessed by MRI in women with endometriosis/ adenomyosis

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…

Screenshot of Researchmyendo.com's definition of Endometriosis

Resources:

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)

Drugbank – Quinagolide

EndometriosisNews (2016) Intravaginal Ring to Possibly Treat Endometriosis Shows Potential in Proof of Concept Trial

Ferring – Ferring Acquires Norprolac

Google Patents – Use of Quinagolide in the Treatment of Endometriosis, Pain and Cancer

Journal of Controlled Release – (2016) A Novel Approach to Administration of Peptides in Women: Systematic Absorption of a GnRH Agonist Via Transvaginal Ring Delivery System

Journal of Obstetrics & Gynaecology Canada – (2015) Vaginally Administered Danazol: an Overlooked Option in the Treatment of Rectovaginal Endometriosis?

Patientwing – clinical trials of quinagolide vaginal ring for endometriosis in the United States

Whois – domain search

You and Your Hormones – Prolactin

~ 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