Feel Good Fridays

no

This one goes out to all of ya who have to say no to many events, happenings, parties, or even yourself. Self-care is so very important. And you should never feel guilty for having to decline an invitation or cancel plans because *you* need to rest and take care of your body.

“Let today mark a new beginning for you. Give yourself permission to say NO without feeling guilty, mean, or selfish. Anybody who gets upset and/or expects you to say YES all of the time clearly doesn’t have your best interest at heart. Always remember: You have a right to say NO without having to explain yourself. Be at peace with your decisions.”
― Stephanie Lahart

I hope that you ARE able to care for you, first.  And I hope you have a beautiful and relaxing weekend.

Love, Lisa

Feel Good Fridays

A super rainy week in Southern California, and I just love the weather!!! So, here we are, a Friday – the end of another week. February is halfway over – are you ready for March?

On to today’s quote. Another one chosen at random, and if it was meant for you today – then so be it.

“If people refuse to look at you in a new light and they can only see you for what you were, only see you for the mistakes you’ve made, if they don’t realize that you are not your mistakes, then they have to go.” 
― Steve Maraboli, Life, the Truth, and Being Free

This may be easier said than done, but it can be done. And sometimes it is absolutely necessary for your survival. You have to take care of you, first. If you don’t, how can you care for others?

I know today’s Feel Good quote may be a bit of a downer, but I need you to understand that we are worth the effort and the love. And others cannot get passed the past and judge you for it, cut them loose. Surround yourself with those that unconditionally love you. Move on.

I love you guys. And wish you the best weekend possible. ~Lisa

Share Your Story: Melanie

Melanie Rossiter is writing a book about Endometriosis (which is available on Amazon) and wanted to share her Endo journey with us today.

Melanie’s Journey: This story is taken from the introduction of my book ‘Reclaiming Feminine Wisdom: An Empowering Journey With Endometriosis’.

My struggle back to health began two weeks after the birth of my second child. I had to have postnatal emergency surgery for a retained placenta, which was followed by pain, adhesions (scar tissue sticking tissues or organs together), and endometriosis.

All this happened whilst attempting simultaneously to look after my new-born and one year old. At the time I kept a big smile on my face, replying, “everything’s fine” to the outside world, whilst my health began disintegrating before me. Not to mention the cascade of hormonal fluctuation from having two children so close together, I wondered if I was literally losing my mind; I would find myself half way through a sentence and completely forget what I was going to say.

There was no time to process the trauma from my postnatal experience, and so it just dripped out over the coming year, with unexpected twists and turns, and eventually some amazing gifts arose from the experience.

Prior to having my children, I had always had some degree of pain around my periods, but I managed them fine, and they never altered my life. It was only before the birth of my first child that they were becoming increasingly more painful. I was very lucky to conceive both of my boys quickly as it was beginning to look like I had endometriosis. Whilst pregnant, there was no pain because my periods had ceased, although this isn’t always the case when pregnant for all with the condition.

My mum had also had painful periods, and I was led to believe it was normal and told to take painkillers as that was what my mum did when she had her period. This is a story that plays out in many households around the world. My grandma had painful periods and so menstrual health was an issue that played out with the women in my immediate family, and I’m not sure how far back through our ancestral line. Women have painful periods, right?  

Well no, pain whilst menstruating is not normal, this was a revelation for me. Throughout my teenage years and twenties, there was usually a degree of discomfort or pain, depending on the month, but luckily, at this time it didn’t have any control over how I lived my life.

If you grow up believing that periods are supposed to be painful and this is true for you in your experience, you do not question it. I had no education on what having painful periods meant from a holistic or medical point of view, I just thought it was what happened to all women.

The wake-up call post-birth of my second child happened after continually going into triage in hospital with jelly-like pieces of tissue from my womb; I did not realise that this was placenta at the time. I wasn’t sure because I had been told after birth that my placenta had all come out, the midwife even offered to show it all to me after the birth. We were always told to go to triage if we had any postnatal bleeding or problems, but I was repeatedly told to go home and wait to see if it would clear on its own. Eventually I ended up feeling I needed to push for a scan as my intuition was telling me something serious was going on and the wait-and-see approach was beginning to wear thin.

Finally, after a few visits, one of the doctors agreed I needed a scan and he began to take it more seriously. He said he would put me through as an inpatient rather than an outpatient to try and speed up the process. The doctor was pushing the radiology department for it urgently but they kept replying that they were very busy; but I was on the list. He told me it was likely to be around five days before I would be seen.

I am still shocked looking back at this. I should have taken myself into A and E. However, because I did not at this point class myself as an emergency, I didn’t go. I did not want to waste their time if I was wrong, and at that time I didn’t feel that I was in an emergency situation to the point where it could be life threatening. To be fair to the doctor, he did say I could try going to A and E, but it was more of a suggestion than something I needed to do.

I did not realise the risk I was taking by waiting, and lo and behold on day four I went into hospital with another section of placenta and was incredibly “lucky” that I was in hospital because when I went to the toilet, I began haemorrhaging and, before I knew it, I was shaking on a trolley with doctors pushing needles into my arm and an emergency operation ensued. It’s amazing what you remember when you go into shock, I remember the dingy hospital lights blaring at me and the doctors voice which seemed to fade into the background of the commotion. He told me “everything will be fine, you are in the right place” and I remember picturing my newly born son and thinking that I didn’t have time for this, I needed and desperately wanted to be with him. I couldn’t understand why it was happening and I felt frustrated that I’d made it clear that there was a problem before, why had no one really listened?

The significance of my body waiting for the exact moment I could get help quickly was not lost on me; I was very lucky to be in hospital at the time it happened. The trauma of this, of course, could have perhaps been avoided if I had been investigated seriously with my concerns. I kept seeing a different doctor every time. They could still see on their records that I had been in more than once and could have contacted the A and E department for their advice in this situation or whether to send me across—hindsight is a wonderful thing. I got a “sorry” from the hospital staff as I was waiting for the operation, but it was over my proceeding journey with endometriosis that I would experience time and time again how women are not heard or feel patronised by some gynaecologists who talk as if they know more about a woman’s body through the textbooks and classes they attend than the women themselves living in them.

You may feel this is a little harsh, and of course I am not talking about the experiences of all women in medical settings, but this is how I’ve felt many times. It seems I am far from alone. I wondered if I was going crazy and if it was just me that felt that there was an injustice in how I was being dealt with. It felt like there were still hints in the medical setting of a historical era of eye watering ways in which women have been dealt with by doctors. The diagnosis of “hysteria” and “it’s all in your head.” Science writer Abby Norman, who also has endometriosis, explains her own experience and research on this in her book, Ask Me About My Uterus. (You will find my thoughts on how we might have been taken away from some of our feminine wisdom in this book.)

I would later know all of this trauma to be the beginning of some beautiful discoveries, and the path towards a deeper calling.

It was after the emergency surgery and a few months of breastfeeding that my “period” returned. There was no blood, only extreme pain in my abdomen that had me in A and E. I did not know it was my period at the time, I had no idea what was wrong, and I was sent home with opiate painkillers as many women with endometriosis are.

This type of painkiller can cause constipation, which could potentially make the discomfort worse than it already is. I realised that it was happening every four weeks, so I felt it had to be related to my period, even though the pain was also around my stomach and navel area too and it continued for several months. What ensued were many hospital visits and anxiety around what was happening in my body, whilst desperately trying to look after a new baby and a one-year-old. I never really asked for help. Like many women, I felt I should be able to get on with things; after all, that’s what women do, right?

That’s what I’d witnessed many women in my life doing. I felt I needed to be strong, or what I assumed was strength at the time. Of course, strength would have been to show my vulnerability and ask for help. We must speak out, the large numbers of us who have endo (or other female conditions or traumas); silence does not beget change or awareness. By speaking out, we allow others to do the same, and when women gather in support, we can be a powerful force. It’s hard to heal in your own silence.  

With no bleeding and just extreme pain in my abdomen, I believed that after surgery to remove my placenta, my womb may have had some adhesions, resulting in a condition known as Asherman’s syndrome, although this was never confirmed.

If I was bleeding, it wasn’t able to leave my body and so I feel it could have caused retrograde menstruation which could have added to my already suspected endometriosis.

The theory of retrograde menstruation leading possibly to endometriosis was acknowledged by Dr. Sampson. The blood containing endometrial cells travels backwards into the fallopian tubes and pelvic area and stays there as a lesion (displaced/abnormal tissue). This is thought, however, to happen with many women when menstruating and whereas the immune system of many women’s bodies clears it up, for some women, the cells remain outside the pelvis, and the hormonally sensitive tissue that is not where it should be follows the same cycle as the womb lining at menstruation. Bleeding into the pelvis when a woman menstruates, resulting in inflammation and pain.

However, retrograde menstruation does not explain why endometriosis lesions have been found in female foetuses. Or why some teenage girls have endometriosis (I will begin to refer intermittently to this condition as “endo”) in their younger years or from the first cycle. Or that it has been found rarely in men. Also, the endo cells are said to be “like” the ones in the lining of the womb that react in the same way as the cells in the womb, building up and breaking down at menstruation.

It may be the case that for some women they are prone due to a number of factors to develop the disease later in life. I also had a tilted womb and found both of my boys breech until towards the end with both of my pregnancies. Luckily, my first turned eventually, but with my second, I was left with the option of ECV (manual turning of the baby) or C-section, and neither of those appealed to me. The shape of my pelvis and womb whilst menstruating, I believe, may have played a part in my endo. There were many other factors that I would later uncover that I feel added to menstrual pain.

For around seven months, I was in and out of hospital being prescribed painkillers and told to wait for my gynaecologist appointment at the BSGE centre (British Society for Gynaecological Endoscopy), or what are known as specialist endometriosis centres. There are a few of these dotted around the country. Once I was finally seen by an endo specialist, they could not see anything on the scan they provided and so I was referred to a gastroenterologist to check for a bowel problem before I would be offered the possibility of a laparoscopy (keyhole surgery). The trouble is, a scan can miss endo, which is why laparoscopy is the only way to diagnose it properly.

I was angry and frustrated. The pattern was around every four weeks and a specialist centre was sending me to a gastroenterologist, but I had classic endo symptoms and had it suspected prior to my births with an MRI that showed what looked like a large lesion in the pouch of douglas, the area between the rectum and the posterior wall of the womb.

This unfortunately is very common for women with endo, and diagnosis can take seven to ten years on average. A fire of injustice began to simmer within me; how could this be?

The more I discovered and experienced myself, the angrier I became. Why was women’s healthcare being failed in so many ways? Not just for endo sufferers. I could write many books on women’s health experiences and struggles to get necessary support, or to just be heard. This is also where it becomes important to empower and support ourselves, too.

In this day and age, how can we have a disease that affects one in ten women and has the potential to have such a dire consequence on the quality of life of those afflicted be so poorly researched and understood? Why had so few people heard of it?

If it affected both sexes, such as other diseases like Asthma or Crohn’s or Celiac disease, would people know more about it? It still astonishes me how the public cannot know about such a devastating disease and the struggle women with endo go through to be heard or supported, let alone receive appropriate care. I realise that I speak from a position of privilege in the UK as there are some countries where the level of care for endometriosis is much worse or women cannot afford to pay for treatment. Endometriosis needs worldwide support.

I’ve heard enough stories from other women who also have been disregarded with their pain, made to feel like they are just ‘’drama queens’’ because, hey, it can’t really be that bad. There are so many women with endo who have stories about extreme pain and being sent home with advice to take a couple of paracetamols and use a hot water bottle, their doctors seriously displaying a lack of understanding about the toll endo can take. Never mind the many younger women who have been told they are ‘’too young’’ to have endo. Some of the suffering comes from a lack of care, understanding or awareness of how debilitating it can be. You cannot see endo and scar tissue and the damage it is causing internally and pain is subjective so outwardly you can look fine. Women with endo are used to putting on a brave face when they are experiencing pain, possibly because it is so misunderstood that sometimes we give up trying to explain it. With more awareness and understanding this can change.       

It is incredibly frustrating when little is known about the true cause of a disease. I am far from alone in feeling this. The science is not there yet as to why women develop endometriosis, although there are theories and speculations, one of which I’ve outlined. What we do know for certain is that the lesions are oestrogen sensitive.

The truth is there are so many questions with so few answers, there has not been the investment, interest or research into the disease from a medical point of view, this is a serious concern when you think about the research gone into other diseases. Trust me when I say, mine is just one story from many similar stories from other women with the disease and we are beginning to speak out. This book is about what I’ve discovered about it from an experiential perspective.

Doctors hand out various prescriptions, sometimes giving the impression that they are the authority on the best path for you. But if it’s regarding menstrual conditions, it’s always worth doing your own research and asking questions so you play a part in the decisions. Be assertive with what you feel you need but know that there are many women having success reducing or eliminating symptoms through holistic approaches too, this goes for all reproductive conditions. You may want or need both but make sure you are presented with all the risks and benefits to make an informed choice, whatever route you decide to take. Many doctors don’t have the time that most of their patients need, and I do not envy the stress of their workloads. Most of them are genuinely trying to help in the way they know how, but the truth is, no one understands endo more than the women afflicted, especially when symptoms don’t fall under the “classic symptoms’’.

Endometriosis can affect far more than the reproductive system; it has an impact on other systems like the nervous and immune systems. It has also been found in the lungs, nose and even the brain, although this is rare. But women do lose organs to endo. There is even more of a struggle in diagnosis for those who have it in other areas. I suspected endo in the thoracic area. I feel blessed that the disease didn’t cause me too much difficulty in my younger years and to those whom it is affecting, there is hope and ways to support yourself that you may not have considered—this applies to many menstrual conditions too, as my experiences showed me.

My hormones were imbalanced, and my body began reacting to the disease in other ways. My immune system was low, and I ended up poorly with pneumonia (possibly related to suspected endo in the thoracic area) and back in hospital. My body couldn’t cope with the stress of looking after two young children and a disease that was rapidly raging on the inside. It was a call from my body—if I wasn’t going to slow down, I would be made to.

My heart goes out to any women suffering with illness whilst looking after children.  I knew my body was desperately crying out for rest and a chance to rebalance and recover. The truth is, I could have put them in childcare at that point and focused on getting better, but I felt guilty and very sad that I might miss the baby phase. I was also lucky to even have it as an option in the first place. It was by far the most challenging and difficult year of my life. My body desperately needed to stop and recover, but there was no time; I had to keep going. Eventually I had no choice but to find another way. I was surviving and pushing through as much as I could, but I was becoming very unwell.

I tried desperately to get back to an endo centre after they sent me to a gastroenterologist to let them know I was certain I had endo or Asherman’s as a result of what happened, or that it had aggravated existing disease. Unfortunately, it would take far too long, as they have long wait lists. And so, I ended up going back to the hospital that originally referred me to the specialist centre, sigh.

I managed to get a laparoscopy booked in for a few weeks after I had my consultation, and surprise, they found endo. The surgery was not carried out by an excision specialist, which is what I wanted. There is a difference between ablation (burning the surface whilst possibly leaving deeper disease) and excision (complete excision of disease tissue). Also, with ablation, the tissue is destroyed and so it cannot be sent to pathology to check on cancerous possibilities.

There are only a number of gynaecologists who are qualified in endometriosis advanced excision surgery in the UK and in other countries, so women might be at risk of receiving inadequate treatment, with disease left behind. Not the fault of the gynaecologist; they may not have been trained in the techniques and skills necessary for advanced disease. An excision specialist knows where and what to look for and will often work in a multidisciplinary team with a bowel or bladder surgeon. They will aim to eradicate deeper disease. Some endo lesions can unfortunately be very difficult to spot.

However, I was very grateful for that surgery as I bled again two2 weeks later for the first time in months, and the levels of pain had reduced. It gave me the respite I needed and some time to take charge of my health again.

Interestingly, on the follow-up appointment post-surgery, I was told that it was a coincidence I had bled again after the surgery. Hmmm, I thought, it may be because hospitals do not like to admit to Asherman’s cases as it can be the outcome of surgery; it is not a disease of itself. I had already signed a form to accept the risk and possibility of Asherman’s before the surgery, so it was not this in itself that was frustrating. It just seemed to be discounted immediately when I mentioned it. I had also read that Asherman’s could be more likely following birth if women have had a ‘D and C’ for a retained placenta. This is because the womb is not yet healed properly. Perfectly logical, it was confusing because I couldn’t believe how quickly it was discounted when I expressed my concerns that this is what could have been causing all the pain with no bleeding. It was the fact that it was dismissed out of hand with no investigation, and at this stage, I didn’t have much energy to argue. I only wanted to get better so that I could look after my very young children.  I will never know if this was truly the case.

There were many GPs and endo specialists who recommended the pill to me. It has helped with the management of symptoms for some women, providing relief, but others find they are eventually in worse pain or experience side effects, and it does not cure the disease. I was not looking for a suppression of symptoms. I also find it “intriguing” that women who only ovulate once a month are predominantly taking hormonal contraception, with many different options continually presenting themselves. Where are all the options regarding hormonal contraception for men? Ahem.

I had a strong intuitive sense that this was not the way forward that I wanted to take. I was not comfortable altering my already imbalanced hormonal system in this way. I felt that if my body was imbalanced or dis-eased, then I wanted to find a way to put the “ease” back in. I wanted to return to health and thought that there must be a way of using other natural methods to allow my body to restore itself. I wasn’t looking for a magic pill, I wanted to return my body and hormones back to a state of balance so that it could be in a stronger position to heal itself, or at least reduce inflammation and other symptoms.

Again, upon reflection, this was all part of my journey. I could never bring myself to take the pill at any time in my life and I wasn’t sure why I felt so strongly about it, but my intuition said no. I was also a reflexologist at the time and knew there were lots of holistic ways to help myself. I was about to make some beautiful discoveries about menstruation, so this intuitive sense seems very “coincidental” considering what later transpired.

I was also, however, very aware that the D and C for my retained placenta had caused a lot of damage in my pelvic area and that I would not rule out another surgery. I was very clear that if I ever needed surgery again that I would have an endo surgeon I could trust and who would be qualified in excision surgery.

I began my research and decided to have a private consultation with a surgeon in Birmingham who was renowned for his expertise but also for listening to his patients.

His clinic had a good atmosphere, and I felt at ease upon meeting my surgeon. He had a warm and welcoming smile and a presence or air about him that I instinctively felt trusting towards. Even my husband commented on his presence without me saying anything about how I felt, which made me smile. For the first time, I felt as if I had been listened to with empathy. He had the same frustration I did, having heard many times from other women how difficult it was to get diagnosed and receive appropriate care. I knew straight away that if I needed surgery again, it would be with him. I was aware that the surgery I had received previously would not have removed all my disease and that the surgeon had not checked the bowel and all other areas that endometriosis can hide. He had also ablated and not excised.

We made the decision that we would leave it a few months before deciding whether to go ahead with excision surgery. This was because my symptoms had improved from the previous laparoscopy. And now that I was bleeding again and had some lesions destroyed, I had some relief. I didn’t want surgery again at that time. I wanted to see what I could do to improve any lingering symptoms or stop the development of any further disease.

Every time we met for our follow-up appointments, I delayed, as my symptoms had reduced drastically after following the methods and insights laid out in this book. But I still had the sense that he was at some point going to help me or be part of my unfolding story. I also had a fear that I would end up in a situation like before, not getting the treatment I needed. I was still anxious after not being heard so many times. My body was still on high alert after so much trauma. I did not know then what I know now.

The support began as I ventured on my quest to return my health on all levels. I was about to unpeel so much wisdom that I had no idea I could access. If you do suffer from endometriosis or any reproductive issues, or if you are just looking to connect to your body with wisdom and love through self-care, my book offers a truly holistic and empowering feminine path. I hope the methods and insights I discovered could give you the same joy, wisdom, feminine reconnection and respite they gave me.

You can purchase Melanie’s entire story on Amazon.   Or you can email her directly.

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I want to send a special Thank You out to Melanie for being brave enough to share her personal story, struggle, and victories with us today.  And we wish you all the luck with your book and Journey! ❤

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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.

Recap: End Endo FUNdraiser 2019

Each year, a few gals get together and take over Shooter’s Cocktails, a local bar, to raise money for the Endometriosis Foundation of America. And this year was no different.

On January 27, 2019, Tanya Linda (aka Saint Birthday Suit), Sister Donatella Soul, and the San Diego Sisters of Perpetual Indulgence came together and raised almost $400 through general donations, drink sales, and online donations! A local band, the Ass Pocket Whiskey Fellas, also rocked the house and donated CDs to the cause.

Donatella and Tanya, who both have Endometriosis, agreed to share with us why they do what they do…

Tell us why you choose to raise money for Endometriosis awareness and research.

Tanya:
It is all I can do so I give it my all.

Donatella:
Tanya chooses to organize this fundraiser for her birthday every year with the help and support of The San Diego Sisters. It is important for Tanya as she manages living with endo. Five of the members of our Sister House in SD have endo, so it us important for us to support awareness and research and provide outreach to those in the community looking for understanding and a little joy. The venue we use, Shooters Cocktails, allowed our use for this fundraiser as one of the owner’s relatives has endo.

Can you tell us more about the Sisters of Perpetual Indulgence?

Donatella:
The Sisters of Perpetual Indulgence started Easter weekend, 1979, in San Francisco. The Mission is to promulgate joy and expiate stigmatic guilt. The Sisters were the first group to recognize, inform about, and fundraise for HIV/AIDS. The Order has spread and Houses and Missions may be found worldwide.

Tanya:
My favorite activists in SD. Bawdy, Funny, Informed, Helpful and without Shame!

This year a little something special occurred. The San Diego Sisters of Perpetual Indulgence granted Tanya a Sainthood! What’s that?

Donatella:
Personally, I have wanted Tanya to be sainted for some time for her support and promotion of The Sisters. Being able to include her efforts in endo awareness and fundraising was a Joy. I think it is an important inclusion as it means representation for those in our community managing endometriosis. A Saint of The Sisters of Perpetual Indulgence is a member of the community who supports the work of the Sisters. In Tanya’s case, her endo outreach has enabled The Sisters in our outreach and fundraising efforts for endo. A Saint is a member of The Sisters who does not have voting privileges. They are community members who support the work, but do not have a calling to be a Sister or Guard.

Tanya:
I am honored to help our Sisters help those in need in our community.

I know that Tanya serves special Endo-themed drinks every year at the FUNdraiser. What’s up with that?

Tanya:
Warning! Bawdy and we make no apologies for that!

Donatella:
LOL, Tanya and I wanted to create drinks that brought some joy, that the women could have a chuckle at. Also, the names make an impression on the men so in a humorous way we can get some points across about pain and discomfort. It is fun to hear the men get into it and yell, “I’ll have another Heavy Flow!”

Note from Bloomin’ Uterus: a portion of the proceeds from each of these drinks were donated to the Endometriosis Foundation of America. The drinks included: Heavy Flow (a bloody mary), Moist Vagina (a delicious shot), and Yeast Induction (a beer & a shot).

Anything else you’d like to share?

Tanya:
Derek French is an acupuncturist here in Mission Valley (San Diego, CA area) who has been treating my early stages of Endo with herbs and weekly acupuncture for over a year and my painful periods are now a whisper of what they were. Derek has treated Endo patients in more advanced stages with great results his number is (619) 993-9297.

Donatella:
I have found the End Endo event to be a wonderful way to let those suffering have an afternoon of fun and camaraderie with others who understand. It has worked to bring out women who have just been diagnosed, but do not know where to turn for information.

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I cannot thank Tanya, Donatella, or the Sisters enough for doing this year after year. And Shooters for housing the fundraiser! AND a huge shout-out to the Ass Pocket Whiskey Fellas who were absolutely incredible (and will be joining us for our March walk)! Annnd than you Richard for the photographs and video!

If you missed the FUNdraiser this year, don’t fret: they’ll do it again NEXT YEAR!!! Thank you, Sisters! ❤ It’s always a blast and it’s for such a phenomenal cause.

All of these photos were taken by Richard T. Reyes (Saint Angel con Cuernos) and used with his express permission:

EndoWhat? A Free Screening

Do you have Endometriosis or know someone who does?  Or maybe you think you may it?  

Join us for a free screening of the EndoWhat documentary in San Diego, followed by a Q&A panel hosted by Dr. Sally  Rafie of The Pharmacists Clinic, Sister Donatella Soul of the San Diego Sisters of Perpetual Indulgence, and Lisa Howard of Bloomin’ Uterus.

Come to meet other EndoWarriors, like yourself.  Bring your friends and family and educate them about our illness.  Empower yourself and educate others.  Together we can do great things!

Seating is limited to 250 people, so please reserve your tickets today.  

Tickets available at EventBrite.

March 16, 2019; the screening will begin at 1:00p.m. UC San Diego Skaggs School of Pharmacy & Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. There will be free parking on the campus.

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Endometriosis or “endo” is the most common, devastating disease that most people have never heard of. It affects 1 in 10 girls and women. That’s approximately 176,000,000 people on the planet.

Despite its prevalence, women see an average of 8 doctors for 10 years before diagnosis. During that time, many are forced to miss school, leave careers they love, abandon dreams of having children and watch their personal relationships suffer. They’re often told incorrectly by doctors that pregnancy & hysterectomy are cures and that pain is normal or in their heads. After diagnosis, they’re usually prescribed an array of drugs & undergo multiple, ineffective surgeries.

It’s time to break that cycle. It’s time for a new normal that doesn’t mean multiple doctors, drugs, surgeries, misdiagnoses and years of pain. The only film of its kind, Endo What? gives an accurate, up-to-date base of knowledge straight from the experts.

It’s a film to educate & put power where it belongs – in the hands of girls & women.

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Where: UC San Diego Skaggs School of Pharmacy and Pharmaceutical Sciences; HSEC Auditorium; 9500 Gilman Drive; La Jolla, CA 92093. Follow the stairs outside the building down to the lower level.

Parking: There will be free parking available at the parking structure in the blue-highlighted area:

I’d like to extend a HUGE thank you to Dr. Sally Rafie and Sister Donatella Soul for all of their hard work in helping me bring this event to the San Diego community.

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We hope that you can join us!

Feel Good Fridays

An ancient bristlecone pine; From a trip with friends Sept. 2018

Another Friday is upon us and the first week of February has come to a close.

For today’s quote, I opened up the book of “Quotationary” that my Mum bought me and selected a random quote on a random page. May I present to you (Page 207, first column, second quote):

No tree becomes rooted and sturdy unless many a wind assails it. For by its very tossing it tightens its grip and plants its roots more securely; the fragile trees are those that have grown in a sunny valley. ~Seneca the Younger


Of all the random quotes in this 961-page book, my finger landed on this one. And I love it. Not only because I feel it a personal testament … but I also find it a testament of all of you strong Sisters and Warriors. We’ve become stronger by our adversity, our illness, our community. We aren’t a lone battle-scarred tree perched on some forlorn hilltop. No! We are a mighty forest, a tended orchard, a protective thicket, and an oasis in the desert.

Think of the aged and gnarled and resilient bristlecone pines that stand for thousands of years. When we visited the park in California in late 2018, I cannot begin to describe the ferocity of the winds that assailed the top of the mountain…yet the pines stood tall and proud.

We are great in number and greater in spirit. And we are made so by each other and those who support us and hold our hands during the rough times.

You are not alone, my beautiful strong-rooted Ones. Have a wonderful weekend. Love, Lisa

Blogs I Updated This Week:

Bladder & Endometriosis – added a 2019 study of a woman who developed ureteral endometriosis which blocked the flow of urine from her kidney

Endometriosis: Finding the Silver Lining – added Brandy and Amanda’s thoughts on how Endometriosis has positively affected their lives.

Endometriosis & Leg Pain/Sciatica – added a Nov. 2018 study about Endometriosis-induced sciatica

Endometriosis & the Appendix – added a Jan. 2019 study, as well as my Nov. 2018 surgery and personal experience with appendix-endo.

Endometriosis & the Bowel – added a 2019 study of a woman with a bowel obstruction and cecum mass which led to an emergency surgery; turns out: it was Endometriosis.

Endometriosis on your Skin – added a 2019 abstract of a woman who developed a skin-colored nodule that ended up being Endometriosis.

My Fourth Endo Excision Surgery – I received an update on my surgery billing. My insurance covered the hospital and anesthesiologist bills and paid my copay. I’m still waiting for the insurance to approve my pathologist’s bill, as well as waiting for my colo-rectal surgeon’s bill to arrive.

Orlissa: AbbVie’s New Drug to Manage Endometriosis Symptoms – added a 2019 abstract of the Phase 3 Clinical Trial outcomes.

Reader’s Choice: Can Men Get Endometriosis – added a 2019 study of a 54-year-old man who developed Endometriosis at the base of his bladder.

Our Upcoming Endo Walk

2018’s Attendees

I’m SO excited!!!!!

Our Endometriosis Awareness & Support Walk just hit it’s 200th registered walker!!  HOLY COW! We only have 100 spots left!  If you haven’t registered, please hurry up and do so.

And if you have already registered, please check your inbox for a confirmation email from Yours Truly – if you don’t have one, I didn’t get your registration!  Only 54 days to go!

I cannot wait! ❤

Pain Journal: January 2019

I’ve decided to start publishing my pain journals; not only in the hopes of documenting my Endometriosis Journey, but possibly helping others with theirs. Let’s get intimately familiar with my habits, shall we? 🙂

I use Google Slides to track my food, drink, bowel movements, medication, sex, and pain levels. I also track the location of my pain. And I’ve found this method helps me stay more in touch with my body and it acts as a great aid for my doctor and surgeons. I can access Google Slides from my PC, my phone, and my tablet; so it’s never too far away. And if I’m too lazy to open the app, I just shoot myself an email with a timestamp and description of what’s going on (i.e, 2:45pm ate a bowl of vanilla ice cream). Then the next day (or whenever is convenient) I rebuild my Google Slides with that information.

There are several Smartphone Apps out there that act as diaries and symptom trackers, too, but I’m all paranoid about permissions and developer access. 😉 BUT…the most important thing: you do what’s best and easiest for you.

So, welcome to my world. I will likely retroactively post my prior pain journals just to have them all in one place and can compare!

I’m pleased to say that January was relatively uneventful! Surgery was a huge success and most of my pain has been discomfort from my incisions and staples, learning my new bowels (and what NOT to eat/drink), and very very mild period pain. I literally forgot I was on my cycle for 99.9% of my period!

You can feel free to scroll through the slides of every day in January:

I also wanted to start tracking my new bowel movements by type and pain levels. I’m a visual kind of person, so I like all the info in ONE place. And I simply cannot believe the difference since my surgery! To poo almost EVERY day multiple times a day and to have zero pain most of the time is incredible! AND to see the difference when I’ve eaten (or in this case…drunk) something that didn’t agree with me. January 25th and 26th were Life Lessons, that’s for sure. I’ll most definitely have to go back in time and rebuild my pre-surgery poop charts!

Blue is the number of poops in a day, the orange line shows if I had any diarrhea (and how many times in a day), and the red line shows pain levels during bowel movements:

I am so grateful for my Endometriosis surgeons: Dr. Mel Kurtulus (my gynecologist and excision surgeon) and Dr. Matthew Schultzel (my colo-rectal surgeon). You have given me my life back.

Feel Good Fridays

We’ve made it through yet another week. And the first month of 2019 has drawn to a close (already?!?).

I had an incredibly relaxing weekend celebrating my husband’s 50th birthday last weekend. And he’s been on vacation this week, too. So today’s quote is all about finding a moment to relax.

And this quote really hit me square between my shoulders…literally. Take a moment, become aware of your body, and try to let it all go….

“Relaxing the shoulders is vital for relaxation in general. However, owing to the effects of gravity, relaxation is problematic unless we let the shoulders remain in their natural place. Let the shoulders drop, or settle in harmony with gravity, into their most comfortable position. It isn’t too difficult to do this for a moment, but to sustain this condition unconsciously in our lives is another matter. We raise our shoulders unnaturally when we lean on a desk or hold the telephone between our shoulders and ears, when we are shocked by a loud noise, and who knows how many other times throughout the day. And the unsettling of the shoulders doesn’t have to be large to produce anxiety, stiff necks, and headaches. Just slightly raising them will create tension, and this tension throws the nervous system out of balance.


When do we raise the shoulders in daily life? What are we feeling at that moment and leading up to that moment? Remembering that the body reflects the mind, and that the raising of the shoulders not only creates tension but also is a physical manifestation of psychological tension itself, what are the roots of this tension? Bringing the mind into the moment, let’s observe ourselves in a state free of preconceived ideas or beliefs. Don’t guess at these questions. Observe yourself in relationship to others and the universe” 
― H.E. Davey, Japanese Yoga: The Way of Dynamic Meditation

I hope you are able to better center yourself, breathe, and let things go. I will try, at least for today, to be aware of my tension and shoulders (especially because they DO tend to ride high near my ears) and to just…relax.

I hope you have a wonderful weekend. Love, Lisa

Blogs I updated this week:

Endometriosis: Finding the Silver Lining – added Zoe’s silver lining.