Feel Good Fridays

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Happy Friday!

I have a lot of little good things happening in life.  Unexpected and sudden happy things.  Which leads to today’s quote, by Research Programmer, Norm Papernick:

“Those who can laugh without cause have either found the true meaning of happiness or have gone stark raving mad.”

I absolutely loved this.  Thanks, Norm, for such a fun-loving and wonderful quote!

Have a great weekend!  And laugh!

Yours, Lisa

UPDATE : Tampons Taboo?

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If you recall, we wrote about tampons and the potential for chemicals and processing which may be harmful to women.  Didn’t read it?  You can, here.

Well, there’s been some recent developments.

Procter & Gamble (they make Tampax) and Kimberly-Clark (they make Kotex) have conceded to public pressure to disclose some ingredients of their feminine hygiene products.  You can read the online ingredients of each here:

Always

Kimberly-Clark

Tampax

Now if you ask me, these disclosures are sort of a slap in the face.  “Fragrance ingredients” and “Fragrance ingredients like those found in other women’s products” is not a disclosure at all, merely a description.  Likewise for “superabsorbent material”…what makes up the super absorbent material?  They’ve been able to placate some outcry by a partial disclosure, but Congressman Maloney continues her legislative efforts for full disclosure of the ingredients.  Women’s Voices for the Earth will also continue their fight for full disclosure.  Change.org still hosts a petition for full disclosure, which you can read and sign here.

Full disclosure…

There’s a study released by the University of La Plata in Argentina, showing that tampons, pads, and gauze may have carcinogenic ingredients.  You can read the Huffington Post’s story, here.  A video was also created by Now This:

We use these products every month.  We deserve to know what we are either inserting into our bodies or pressing up against our fleshy bits.

Resources:

Always

Change.org

Huffington Post

Kimberly-Clark

Tampax.com

The New York Times

Women’s Voices of the Earth

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

Share Your Story : Amy

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Amy was 29 years old when she learned she had Endometriosis.  Now 38 and living in New Jersey, she has turned her personal battle with Endometriosis into a campaign to help others.

Amy’s Journey: My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

It is now 24 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.

I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is these doctors I went to had never thought about listening to me and looked at me as if I was faking as if I just wanted pills or something other than to be pain free.

Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.

I soon went on Lupron and had every side effect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.

Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.

I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.

In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realize how severe my disease actually was.

The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.

Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan!

Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.

We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments”.

In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF.

Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The chlomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative. It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.

All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practices, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease. The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new!

The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked.

I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for the doctor to get me cleaned up and alleviate my pain.

Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.

The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.

In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!

We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy – doctor’s office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this. All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favorite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.

And we did, in July 2012. This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert in Brooklyn, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.

The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I’m not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.

Unfortunately, the last appointment I had with my favorite OBGYN, felt like many others I had previously, with no help in sight. That was November of 2013.

In February of 2014, I was lucky to find another OBGYN. He was very sweet and reminded me of my first experience with the doctor who got me. I was happy to have someone in my corner again.

In 2014, I went to a specialist in robotics surgery, my OBGYN referred him, not because he was an endo specialist but he was good at the surgery. I was so displeased with this Dr’s attitude and lack of empathy. I felt like he was doing me a favor for seeing me. I was literally crying in his office, he was one of those cruel people who don’t know endo and thought a hysterectomy was my only choice for a “cure”. I was in tears when I called my husband about it. By the time I reached my husband’s office, he was on the phone with Sabrina from Dr K’s office. The doctor is an endo specialist in NYC. She was so helpful of what we needed to do and how she would be in our corner as far as fighting our insurance company for coverage. I was in a much better mind frame after lunch.

That very evening, I had the honor of going to The Blossom Ball to volunteer, this event was hosted by Padma Lakshimi and her Dr, Dr Seckin. It was amazing, so many people supporting the endometriosis cause and I met a lot of fancy shcmancy people. SO with Endo girls all around me I felt empowered to do what I needed to do.

We waited until April of 2014 to make an appointment with Dr K, he does excision surgery and the initial visit, since not covered by insurance is a 100% out of pocket cost. We felt very comfortable with him and he really understood the disease and knew what needed to be done. His office administrator also knew her role in getting the surgery approved with insurance.

So here I was June 2014, getting yet another surgery, this time with a true specialist of the disease to excise ALL OF IT. I woke up from surgery and the results were very good, they removed all of it. I was diagnosed as a stage III of IV stages. Now the trick was to not get it back. I quit caffeine (which is a trigger) immediately and have not turned back to it to this day.

On my most recent follow-up with Dr K, in January 2015, I was diagnosed with adenomyosis, this is where the inner lining of your uterus breaks through the muscle wall of the uterus. Nothing you can do to fix it other than removing the entire uterus. Such is life I guess.

As of today I feel good. I am currently on birth control to control my hormones and to stop my periods from being so awful. It has helped some. I am sure I have a long road with my endometriosis, but I embrace it as there is nothing else I can do … other than help others. That is what I intend to do!

I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.

Words of Advice for Us:  Be your own advocate, always! Never give up on yourself.

Last Words: Thank you for being a voice!

If you wish to contact Amy, you can do so the following ways:

Join her Facebook Group : Our Journey with an Incurable Disease

Follow her blog : Our Journey with an Incurable Disease

Email : akuiters@gmail.com

I want to send a special Thank You out to Amy for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you for all that you are doing for the Endo Community.  And again, thank you for being brave enough to share! Yours, Lisa.

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

Yours, Lisa.

Share Your Story : Nat

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Nat was 22 years old when diagnosed with Endometriosis.  Now 33, Nat wants to share a very important message to the Endo Community, crossing gender barriers and reaching out to an often-neglected group of EndoWarriors.

Nat’s Journey: We need to stop making illness about gender – a.k.a I’m a boi with endo. Under my list of illnesses/disabilities, I mark endometriosis as being one of the most debilitating pain wise. I mean yes I’ve been pretty much out of action this past week thanks to vertigo, but that pales in comparison to the pain of a first full day of menstrual bleeding that chose this morning to kick in and sent me crawling back under the covers. I’ve gone from anti-vertigo meds to the strongest painkillers I have in the flat that aren’t codeine and a heat pack being applied across my tummy in order to just sit up. And believe me when I say that I WISH I lived in America and could go buy a tub of Aleve rather than a tiny pack of NINE of the same effing tablets for £5 (around $8 USD), yes that’s right for NINE of them.

It’s this time of the month I often choose to look online and remind myself that I’m not alone with this debilitating condition which can leave me in bed/on the couch/doubled over. But it never ceases to annoy me that there is always a level of ‘Endo Warrior Girl’ posts and emphasis on being a ‘girl’ or ‘female’ on these posts.

Now don’t get me wrong, I know Endo is a disease that comes with being born with female genitalia, but that doesn’t mean that all of us who have it identify as female. There are people out there like me, who are Genderqueer/Non-Binary who are Endo Warriors, there are Trans* Men who are Endo Warriors. We are valid victims of this debilitating disease and yet we are often not included in the messages of solidarity you find. I still have a womb, I still have debilitating cramps, heavy periods, difficulty gathering the spoons to force myself through that time of the month. I still feel pain when I ovulate. I know the way in which Endometriosis cripples, because it cripples ME.

So this post goes out to all the Genderqueer/Non-Binary/Trans* individuals who like me feel forgotten by a movement that forgets we can have the same disease as those who are cisgender. I feel your pain, I want you to know, that you aren’t alone. I’m sending so much love and recognition your way as I grab a cup of tea, adjust my heat patch, and stick Netflix on whilst waiting for it to be time for my next dose of painkillers.

And a P.S. to my Endo friends in the UK of all genders, if you’re looking for a decent heat patch that you can wear on the go, I recommend Wilko’s own brand. I had an emergency pack of them because they were cheaper than other brands, and they are by far the most effective I’ve used in years.

Words of Advice for Us:  Please remember it’s our reproductive organs that make us Endo Warriors, not our genders. I have endo and am genderqueer, neither male or female but somewhere in between. Trans* Men with endo are warriors too.

Send Nat an email: halfbloodme@gmail.com

Follow Nat’s blog here : http://Scribblenubbin.wordpress.com

I want to send a special Thank You out to Nat for being brave enough to share with us today.  You are beautiful and brave. And thank you for bringing into light a much needed and neglected topic of conversation.  Thank you!!!

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

Yours, Lisa.

2016 Endo Events Around the Globe

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Here’s a collection of events for 2016 Endometriosis Awareness that I’ve found.  I will update this as often as I find a new event!  If you have an event and you’d like to add it, please drop me a comment below with a link.

Online/Everywhere:

EndoChallenge – Month of March 2016

Endometriosis Awareness 100% ONLINE Younique Party – March 14, 2016 – March 24, 2016

Holistic Support for Endometriosis – March 13, 2016

March Into Yellow – Month of March 2016

Yellow Tutu Tea Party – March 19, 2016

Argentina:

Buenos Aires – La Marcha de Millon de Mujeres La Endometriosis 2016 – March 19, 2016

Australia:

Adelaide – EndoMarch Adelaide – March 19, 2016

Brisbane – EndoMarch Brisbane – March 19, 2016

Hobart – EndoMarch Hobart – March 19, 2016

New South Wales : Newcastle – Endometriosis Fundraising Event – March 5, 2016

Perth – EndoMarch Perth – March 19, 2016

Sydney – EndoMarch Sydney – March 19, 2016

Botswana:

Gaboron – First Ever Botswana Endometriosis Awareness Walk – March 19, 2016

Canada:

Ontario : Toronto – Endometriosis & Fertility – February 20, 2016

Ontario : Toronto – Naturally Speaking, it’s Endo – March 5, 2016

Ontario : Toronto – Endo What Canadian Premiere – April 21, 2016

Germany:

Sachsen-Anhalt: Halle (Saale) – EndoMarch – March 19, 2016 (or their Facebook page)

Greece:

Attica : Filothei-Psychiko – EndoMarch Run/March – March 4, 2016

Hungary:

Budapest – 3rd European Congress on Endometriosis – November 17-19, 2016

Ireland:

Dublin – Endometriosis Information Day – March 12, 2016

Italy:

Rome – Marcia Mondiale Per L’Endometriosisi (EndoMarch) – March 19, 2016

Malaysia:

Pantai Hospital KL – I Am Still a Woman (guest speakers, showing of a documentary, release of an EndoSister’s cookbook) – March 19, 2016

New Zealand:

Hamilton – Purple Walk – March 9, 2016 (contact Insight Endometriosis for more details)

Tauranga – Purple Walk – March 16, 2016 (contact Insight Endometriosis for more details)

Nigeria:

Abuja – Endometriosis Walk Abuja – February 18, 2016

Puerto Rico:

San Juan – Medical and Integrative Care for Endometriosis Workshop – March 12, 2016 (email here for more information).  Expert panels in clinical care, mind-body connection, and labor law; opportunities for discussion and questions; Lunch&Learn with experts; Updates of research on endometriosis.  Sponsored by Fundacion Puertorriqueña de Pacientes con Endometriosis

South Africa:

Johannesburg – ENDOmetriosis Worldwide March – March 19, 2016

Spain:

Barcelona – EndoMarch – March 12, 2016

United Arab Emirates:

Dubau – Emel Symposium on Endometriosis 2016 – March 4-5, 2016

United Kingdom:

England : Birmingham – Glamour’s Belly Dance Night in Aid of Endometriosis UK – November 26, 2016

England : Brighton – The Brighton Marathon – April 17, 2016

England : Leeds – The Primrose Ball – March 5, 2016

England : London – Worldwide Endomarch UK (Facebook  page or Eventbrite registration) – March 19, 2016

England : London – Endo What European Premiere – March 21, 2016

England : London – The British 10K – July 10, 2016

England : London – Pink Pants X London Challenge – October 1, 2016 (can’t go? Sponsor my fellow blogger, Claire, and her team!)

England : Manchester – EndoMarch – March 19, 2016

Scotland : Glasgow – Endo What Glasgow Screening – March 23, 2016

Wales : Swansea – EndoMarch – March 19, 2016

United States:

California : Beverly Hills – Q&A with Dr. Sonia Rebeles – February 24, 2016

California : Huntington Beach – OCEndoMarch – March 19, 2016

California : San Diego – The Wellness Institute of America & Bloomin’ Uterus Endometriosis Workshop – February 24, 2016

California : San Diego – Bloomin’ Uterus Walk – March 26, 2016

California : San Francisco – Cycle to San Francisco EndoMarch – March 19, 2016

California : San Francisco – EndoMarch – March 19, 2016

California : San Francisco – Endo What San Francisco Screening – April 13, 2016

California : Spring Valley – End Endo! – February 27, 2016

Florida : Cape Coral – Starbucks Endo Awareness Fundraiser at Dante’s Coal Fired Pizza, 900 SW.Pine Island Road, Cape Coral,Florida 33991 – February 25, 2016 from 4pm-7pm (show up for the fun!) Email Rose for more info here.

Florida : Disney World Resort – Alison’s Run to Beat Endometriosis at the Disney Princess Half Marathon – February 21, 2016

Georgia : Atlanta – 5K Walk for Healing Charity Event for Endometriosis – March 12, 2016

Illinois : Chicago – 5th Annual Fighting Fiercely Endometriosis Awareness Expo – March 12, 2016

Illinois : Oak Brook – The Daffodil Society Endometriosis Awareness Event – June 25, 2016 through June 27, 2016

Kentucky : Elizabethtown – EndoMarch – March 19, 2016

Minnesota : St. Paul – EndoSupport Group – meet the first Thursday of every month

New Jersey : Deptford – Beef & Beer Fundraiser – March 6, 2016 (to raise awareness for Endometriosis on March 6th from 4:30-7:00PM at the Mantua Fire Hall (Deptford, New Jersey). $20.00 per person with door prizes and auction.)  For more info, check out this page.

New Jersey : Egg Harbor City – Endometriosis Awareness and Support Walk – July 23, 2016

New York : New York City – Endo What World Premiere – March 16, 2016

New York : New York City (Rockefeller Plaza) – EFA on TODAY – March 19, 2016

New York : New York City (Central Park) – Winning & Grinning Women’s MORE/SHAPE Half Marathon – April 17, 2016 (email winningandgrinning@gmail.com for more information)

New York : New York City – The Endometriosis Foundation of America’s 7th Annual Medical Conference, Basic to Complex : Passionate Care for Endometriosis – April 17, 2016 – April 19, 2016

New York : New York City – The Endometriosis Foundation of America’s 8th Annual Blossom Ball – April 19, 2016

New York : New York City – TCS New York City Marathon, Run with the EFA! – November 6, 2016

North Carolina : Charlotte – 5K Walk for Healing Charity Event for Endometriosis – March 19, 2016

North Carolina : Charlotte – Charlotte Endometriosis Awareness Walk – March 19, 2016

Oklahoma : Tulsa – Tulsa March for Endometriosis – March 19, 2016

Oregon : Portland – EndoWomen of Oregon – Cause & Event 5K Walk – October 2, 2016

Pennsylvania : Bethlehem – Endometriosis Happy Hour Benefiting The ROSE Project – March 3, 2016

Pennsylvania : Hershey – Endometriosis Mini Conference – March 19, 2016

South Dakota : Sioux Falls – Endometriosis Support Group – May 12, 2016

Tennessee : Kingsport – An End to Silence 3K: A Run for Endometriosis – March 13, 2016

Washington : Spokane – Missing Piece/ENDOvisible Awareness Fundraiser – March 13, 2016

Washington, DC : Capitol Hill – EndoMarch – March 19, 2016

Zimbabwe:

Harare – Stopping Silence Campaign Event with guest speakers – February 27, 2016 (email here for more information)

Bladder & Endometriosis

Illu_urinary_system

You’ve likely heard that Endometriosis can grow in all sorts of places inside the body.  Well, the bladder and urinary tract are no exception.  Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.

Symptoms

Common symptoms women may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee.  Some women also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…).  This urine-blood may not be perceptible to the naked eye and require a lab test.  And as usual, many women only have these symptoms during their periods; others have them 24/7. It should also be noted that many women with bladder Endo don’t present any symptoms.

Some women may have Endo growths on their urethra and/or ureter, which may compress or block some or all of the urethra/ureter.  This blockage can back urine up into the kidneys, causing damage and pain.  It may also make it difficult to fully empty the bladder when peeing.

How to Diagnose?

Your physician may perform a vaginal exam and feel for nodules or to see if you suffer from any tenderness or pain to his/her touch.

A urine analysis may be ordered.  This lab work may help rule out other causes of symptoms, including bladder infections or other bacterial infections.

Transvaginal ultrasounds may be performed.  In some cases, a CT or MRI scan may help diagnosis infiltrating Endo; however, it may not always be seen in these imaging studies.  Do understand that imaging studies are not always reliable or accurate when trying to identify and locate Endometriosis.

If the Endo is actually inside the walls of your bladder, a cystoscopy may be performed.  That’s when a tiny camera is maneuvered into your bladder to visualize any implants. If any are seen, samples of your bladder tissue may be taken for biopsy.

If Endo is only on the exterior of the bladder, it might only be detected by performing abdominal surgery, whether it be laparoscopy or laparotomy.

If Endo is located on or near the ureter, your surgeon may remove the lesions from the affected areas.

How to Treat?

Many patients have had successful results treating their bladder Endo with hormonal treatments and pain killers.  If those do not work, you know the drill : surgery to remove the implants.  If the bladder wall has been infiltrated with Endo implants, a portion of the bladder wall may need to be removed.

Other Causes of Symptoms?

If you suffer from these symptoms, you may not have Endo on/in your urinary tract or bladder; however, may be suffering from some other ailment.  Interstitial cystitis mirrors the symptoms of Endo on the bladder.  And it is possible you suffer from both IC and Endo.  Cystoscopies are also important procedures to help rule out bladder cancer.

Studies and Science

A 2007 study published in the Journal of the Society of Laparoendoscopic Surgeons compared the symptoms of bladder Endometriosis with the similar symptoms of interstitial cystitis.  It also confirmed that one patient may suffer from both conditions.  It concludes that if a patient complains of persistent pelvic pain, even after surgery or medication for Endometriosis, the physician should look into testing for IC.  It may be that there are unresolved Endo implants on/in the bladder, or that the patient suffers from IC, or both.  Just one more thing to be mindful of.

A 2008 study published in the Journal of the Society of Laparoendoscopic Surgeons stated that 1% of women with Endometriosis suffer from bladder Endo.    Six women were studied.  Of those six, all received transvaginal ultrasounds and two received cystoscopies.  All underwent laparoscopic surgeries; two had to have their bladders resected (a portion of the wall removed); five of the women had Endo implants removed.  All reported relief of symptoms after surgery.

A 2010 study published in Human Reproduction followed 75 patients for five years after their Endo excision surgeries from their bladders.  All 75 women stated they did not have recurrent symptoms after surgery.  None suffered from their pre-operative symptoms.  None!

A 2012 study published in Urologia Internationalis, which reviewed literature from 1996 to 2011 regarding endometriosis on the bladder and urinary tract.  After review of the literature, it stated that 0.3% – 12% of women with Endo have bladder or urinary tract Endometriosis.  It concluded that collaborations between gynecologists and urologists are highly advisable in diagnosing and treating bladder Endo.

A study published in 2016 reviewed the records of 53 women who underwent surgery for urinary tract Endometriosis.  A stunning 72% of the women were positive for Endometriosis on their bladders!

A January 2017 article in European Urology stated that women who have bladder endometriosis need multidiscplinary care: urologists, radiologists, and gynecologists all need to work together.  And if you’re looking for photos of what Endometriosis looks line on the bladder, click the article link here.

The International Surgery Journal published an article in January 2017 of ureteric obstruction.  A patient had a ureteric colic (aka a urinary tract obstruction) for the past month, which increased in severity and radiated from her left loin to groin.  Imaging studies suggested the obstruction was a calcification, or what’s known as a ureteric stone.  Surgery was performed: the hard mass was found within her left ureter, as well as adhesions to peritoneum, left fallopian tube and ovary, left iliac vein, and sigmoid colon.  The surgeons removed her fallopian tube and ovary, removed the lower portion of her left ureter, and performed what’s called a psoas hitch procedure (where the bladder is slightly moved and attached to the psoas muscle) to make up for the lack of the lower ureter.  The removed ureter mass was biopsied and confirmed to be Endometriosis.  The authors suggest that women that suffer from cyclical flank pain (during their cycle), pain while urinating, urgency to urinate, have frequent UTIs, or have an elevated levels of red blood cells in the urine should speak with their doctors.  A urologist may need to be involved, as well as CT scans, intravenous urograms, and MRIs may aid in the detection of any obstruction.  A ureteroscopy and biopsy may better confirm the suspicions.

Another January, 2017, article (published in Port J Nephrol Hypert) was of a 29-year-old woman who had complaints of infertility and painful periods.  Testing revealed she had a Stage II kidney injury and an ultrasound confirmed a blockage of both of her ureters.  An MRI didn’t reveal what caused the blockage, so a laparoscopy was performed.  She was found to have Endometriosis, causing a frozen pelvis, and Endometriosis lesions were impeding her ureters.  Surgical intervention, followed by hormonal treatment, and she hadn’t had any recurring Endometriosis symptoms at a 3-year follow-up, but she did continue to suffer from numerous UTIs and poor kidney function.  The damage was done…

A February 2017 study followed the case of a 22-year-old woman who had been complaining of frequent urinary tract infections and pain.  She had an ultrasound and two cystoscopies, and a mass was found within her bladder.  An MRI confirmed the mass was 3×4 cm and a biopsy confirmed Endometriosis.  She underwent surgery (both laparoscopic and transurethral) to remove the lesions, as well as resect a section of her bladder, as it was stuck to her uterus.  At her six-week post-op appointment, she was symptom free.

A study published March 2017 reviewed over 300 cases of ureteral Endometriosis.  You can read that study here.  Another study published in January 2017 states that ureteral endometriosis should be suspected in all cases of deep infiltrating Endometriosis.

What now?

If you are having these or similar symptoms, talk to your doctor.  A little conversation can go a long way.  And, yes, you may have to endure yet another transvaginal ultrasound, a pelvic exam, or other diagnostic tests…but peace of mind is a glorious thing.

*Updated March 13, 2017*

Resources:

Endometriosis UK

European Journal of Obstetrics & Gynecology and Reproductive Biology – (Abstract; March 2017) Laparoscopic Management of Ureteral Endometriosis: A Systematic Review

European Urology – (Article; Jan. 2017) Bladder Endometriosis: A Rare But Challenging Condition

Gynecological Surgery – (Abstract, May 2016) Deep Infiltrating Endometriosis Affecting the Urinary Tract – Surgical Treatment and Fertility Outcomes in 2004 – 2013

Gynecology and Minimally Invasive Therapy – (Abstract; Aug. 2016) Laparoscopic Excision of Bladder Peritoneal Endometriosis

International Journal of Reproduction, Contraception, Obstetrics and Gynecology – (Article; Feb. 2017) Combined Transurethral and Laparoscopic Partial Cystectomy for the Treatment of Bladder Endometriosis

International Surgery Journal – (Article, Jan. 2017) Unusual Case of Upper Urinary Tract Obstruction: A Case Report

Journal of Minimally Invasive Gynecology – (Abstract, Jan. 2017) Laparoscopic Management of Ureteral Endometriosis and Hydronephorsis Associated with Endometriosis

Karger – (Study, 2012) Diagnosis and Treatment of Bladder Endometriosis : State of the Art

Livestrong

Mayo Clinic

Medscape – (Study, 2010) Surgery for Bladder Endometriosis : Long-term Results and Concomitant Management of Associated Posterior Deep Lesions

Nezhat.org

Port J Nephrol Hypert – (Article, 2017) Rare Aetiology of Obstructive Kidney Injury: Bilateral Ureteral Endometriosis

Urology Surgery – (Blog, 2009) Ureteral Stricture

US National Library of Medicine – (Study, 2008) Bladder Endometriosis : Possibility of Treatment by Laparoscopy

US National Library of Medicine – (Study, 2007) Patients with Chronic Pelvic Pain : Endometriosis or Interstitial Cystitis/Painful Bladder Syndrome?

~ 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

New book added to our library!

heal

Heal Endometriosis Naturally Without Painkillers, drugs, or surgery, by Wendy K. Laidlaw.

Synopsis:  What is Heal Endometriosis Naturally ? Heal Endometriosis Naturally is NOT just another “how to” on alternatives. This book is NOT just about eating more healthily – yet it will explain how eating in a new way will help. It is NOT a ‘quick fix’  – yet this book will show you how easy it is to maintain the natural approach and get out of pain for good. Heal Endometriosis Naturally is a Road Map to a Pain Free Body. Pain is a symptom of a much bigger problem that is a little harder to see, but a lot easier to heal when you know why and how. Inside this book you will find the road map detailing the 12 basic principles I used to heal my endometriosis naturally after suffering for over 33 years. Heal Endometriosis Naturally shows you how to: * Eliminate underlying triggers of endometriosis  * Get rid of the debilitating pain within three menstrual periods * Dissolve and eliminate cysts and adhesions * Beat chronic fatigue

If you’d like to borrow this book for a month, read it, and return it, click here to enter our library and place a request!  Or just check out the library for a vast assortment of other books available!

Feel Good Fridays

trash

It’s Friiiiiiiiiiiiday!  And I’ve been having a stressful week, so this week’s quote is about…stress!  Brought to you by Danzae Pace:

“Stress is the trash of modern life-we all generate it but if you don’t dispose of it properly, it will pile up and overtake your life.”

So, it’s true : we all have stress in our lives.  Some a little, some a lot.  And we all have to deal with it, or it WILL win.  Breathe. Meditate.  Get away.  Color. Watch your favorite show.  Listen to music. Walk the dog.  Cry.  Something.  Let it all out and give it some release.  I need to take some of my advice this weekend 😉