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.

ABC 10 News Interviewed Local EndoWarriors About Lupron Depot

Jennifer Kastner of ABC 10 News San Diego reached out to Bloomin’ Uterus to see if we had any of our local Endo Warriors that had treated with Lupron Depot. Several of us had and jumped at the chance to share our experiences on the drug.

Five EndoSisters, Jennifer, and her cameraman Adam met for a two-hour interview one afternoon early this year. It was an incredible experience. We each had the opportunity to share our Endometriosis stories and our experiences on Lupron Depot.

One Sister has chosen not to take Lupron and talked about her battle with physicians to respect that decision.

The 2-hour Q&A session was paired down to a 5-minute investigative report. Jennifer did a wonderful job of fitting in a bit of our stories, as well as covering the side effects of Lupron, and the havoc it can cause.

If you’d like to watch the interview and read the more in-depth written report, please check out ABC 10 News’ page.

I’m grateful to Jennifer and Adam for reaching out to us and dedicating their afternoon to our interviews and for their weeks of investigative research. And I’m so proud of, and equally grateful to, our EndoWarriors who were able to join me that day: Melinda, Amanda, Brooklyn, and Linda – I love you. And am so pleased that you’re a part of my life.

Thank you for all that you do. Together we can achieve great things!

My 4th Endo Excision Surgery

"Uterus & Guts," created by Ivy Denton
@deathwindchimes 

Before I get started, let me explain the image above. A talented artist by the name of Ivy Denton (@deathwindchimes) created it for me (they also created the EndoGuy and PoopChuteSnakie you’ll see below). They’re taking commissions if you’re interested in throwing ideas their way! “What is it,” you may be asking yourself. It’s a whimsical interpretation of my insides: a uterus with two cervix, no fallopian tubes (hence the band-aids and floating ovaries), and it’s accompanied by it’s new buddy: an intestine missing some pieces. I think it’s adorable! Thanks, Ivy!!


On with the good stuff! If you didn’t already know, back in July of this year Dr. Kurtulus discovered a pair of Endo lesions on my small intestine. He brought in a colo-rectal surgeon, Dr. Schultzel, to look at it and decide if we could remove it then. Unfortunately, it was deemed too deep and risky without a proper bowel prep and a future resection would take place.

On November 26, 2018, I had a tag-team surgery for my Endometriosis. Dr. Mel Kurtulus once again performed my excision surgery and Dr. Matthew Schultzel performed my bowel resection. This took place just four months after my last excision surgery. The procedure lasted about four hours and went without a hitch. I remained in the luxury resort…I mean the Prebys Cardiovascular Institute at Scripps Memorial Hospital for three nights/four days while I recovered.


The Bowel Prep

This was my very first bowel prep. Ever. And I was terrified of so many things. I’d heard horror stories about the taste of the prep, and equally horrifying tales of the aftermath.

I was prescribed Suprep, which of course my insurance refused to cover. If that ever happens to you, get a manufacturer’s coupon off of their website and bring it to your pharmacist. It certainly knocked a bit off the price for me!

Honestly, it didn’t taste that awful…kind of like a salty grape-flavored 7-up. But ugh it was still rough to get down.

35 minutes after I downed my first big dose of Suprep…and the torrential downpour had begun. Over the next 2 hours, I pooped a total of 19 times (I’m sparing you the details, but kept a detailed log; no pun intended). Most of it was liquid and sometimes I couldn’t even leave the toilet in between craziness.

My colo-rectal surgeon also had me on a regimen of ClearFast, to help not only keep me hydrated during the process but to make for a faster/easier recovery after surgery.

Then at 10pm, I took my 2nd dose of Suprep. It took about 30 minutes to take effect and over the next hour I poo’d liquid 13 times. At 11:30, I dragged myself to bed. At 4:00am, I woke up to take my prescribed ClearFast and learned that Suprep was still in command. I pooped again 5 times over the next hour. And when we got to the hospital, I poo’d liquid again twice before surgery (once in my surgery cap ‘n gown)! I was scared that the clear liquid-pooing would keep them from performing my surgery since I was obviously still voiding. Nope! The show must go on!

The Bowel Resection

After a few months of working with my insurance and getting Dr. Schultzel specially-approved for my surgery (even before he was in my insurance network), the day was here! I endured the prep and I was ready!

My Mum came with me to the hospital and my husband had to work, we met the smiling faces of hospital staff who have remembered us from previous surgeries, AND I had my favorite nurse help me during pre-op setup. Fist bumps, hugs, and cheek-kisses were exchanged all around the pre-op area as they wheeled me out of the room. Have I mentioned how much I love this hospital? They’re like family!

I digress: back to the surgery!

Previously, the endo was spotted on my terminal ileum, which is the area where the small intestine meets your large intestine ( X marks the spot on the picture below). At my request, my colo-rectal surgeon was also going to remove my appendix due to the close-proximity of Endo and the chance that it, too, may be affected. He was also going to inspect and possibly remove any portion of my large intestine that may also be Endo-laden (see the red square below). He ended up doing JUST that.

There were a total of five incisions (1 on my right side, 3 on the left, and a larger one at my bellybutton). I was given a TAP block injection while I was under anesthesia to help with my post-op pain. And in went the camera…

Dr. Schultzel spotted the Endo lesion on my terminal ileum right away, then saw more lesions on my cecum (kind of the bottom right portion of the large intestine) and near my appendix. He also saw a lot of pelvic Endometriosis, but knew Dr. Kurtulus would be handling those nasty buggers.

This is where things get exciting! When I learned I’d have my guts stapled together, I envisioned a big ol’ heavy-duty office stapler. BUT a surgical stapler, especially a robotic stapler, is waaaay cooler! It sort of cuts and seals at the same time with a row of tiny little staples. If you’re familiar with sewing, imagine a serger machine. Zip & slice! One neat little package. I have no way of knowing how many staples still reside in my guts, but I imagine a lot of little teeny ones!

If you don’t want to imagine, you don’t have to: here’s a Youtube video (not mine) of another surgeon using a robotic stapler during a surgery (fast forward to the 0:44-second mark) https://www.youtube.com/watch?v=wSxiTZwdUFA

So, Dr. Schultzel removed my appendix, my cecum, a portion of my large intestine, my terminal ileum, and small intestine. All in all, it was a little over 7 inches (18 cm) of my guts. The stapler system was used in all areas where my guts were removed.

My small intestine was reconnected to my newly-constructed large intestine and that connection now lives over my liver, near the right of my bellybutton. Then he wrapped that little newly-formed gut-intersection in a flap of my omentum (a fancy term for a fatty, fleshy organ that sits near the stomach and is kind of like a draped apron) – imagine a little poopchute burrito or taco near my bellybutton. 🙂

Dr. Shultzel then passed the controls of the Da Vinci over to Dr. Kurtulus (see The Endo Excision below). Once Dr. K finished removing any Endo and adhesions, Dr. Schultzel continued to work his magic. He pulled out all of the cut-out bits through a hollow tube placed in my bellybutton incision (called an Alexis wound retractor), stitched, and glued me up.

Alexis Wound Retractor; photo courtesy of Applied Medical

My incisions are definitely larger than surgeries-past, but so much more was done. After reading about the Alexis Wound Retractor, now I understand why my bellybutton incision is roughly 2 inches long!


The Endo Excision

Awww, Endometriosis. It loves me so much it keeps coming back to visit. With it being just four months since my July wide-margin excision surgery, we weren’t expecting to find much, if any. Dr. Kurtulus was there to inspect under the hood just to be safe while I was already under the knife for my bowel resection. A wonderfully, perfect coordinated effort. Boy, were we in for a surprise.

He found newly-formed adhesions on my left side, which involved my left ovary and abdominal wall, more along my peritoneum lining, as well as new adhesions that had begun to smash my bladder back down. He also found Endometriosis lesions “all throughout the pelvis.” They had grown back on my right ovary, my right ovarian fossa (where the ovary hangs out), my Pouch of Douglas, the uterosacral ligaments, near my bladder, my left ovary, and the left adnexa. And, as is customary, an Endometrioma (the chocolate cyst) had formed again on my left ovary. Always my left ovary!!! Even after just four months…*sigh* But…”the rest of the pelvis and abdomen looked clear of endometriosis lesions.” Yay!

He removed all of my Endometriosis lesions with wide-margin excision. He also removed the Endometrioma (he saved my left ovary) and he cut away all of the adhesions that had formed. He also, as is our custom, performed a cystoscopy to look inside my bladder for any Endo or abnormalities: pink, healthy, and all normal! And for the first time in a few surgeries: no Endo on or around my ureters!

Everything that was removed: the gut-bits, the Endo lesions, the adhesions, and Endometrioma were all sent off to pathology. This was the longest pathology report I’ve ever received: a total of seven pages! And it confirmed the presence of microscopic Endometriosis on my appendix. I’m SO grateful the surgeons and insurance all agreed to preventatively remove it.


The Recovery

My Mum, husband, and friends who saw me after surgery said it appeared to be my easiest one yet, in terms of how I felt during recovery. I, on the other hand, felt it was my hardest.

Four days in the hospital: my Mum stayed with me every day while I was there (I love you, Mum!!), my husband would visit after work, both of my surgeons visited as often as the could, and the nursing staff were freakin’ amazing!

During my stay, I was given a cocktail of Tylenol, Gadapentin, and Celebrex to manage my pain. I was offered Tramadol (100mg), but didn’t want it since I already don’t like taking my 50mg Trammy at home. But the cocktail did well and pain was minimal. If memory serves me correctly, I threw up a few times the evening of my surgery (likely related to anesthesia) and became intimately familiar with the hospital-issued throw-up bags.

My surgeon and hospital staff encouraged me to get up and walk the halls as often as I could muster. Not only would this help keep me limber and young (Ha!), but it would help get my bowels workin’ and tootin’. Those long walks around the 5th Floor wing were fun: I stumbled across my surgeon on one of those walks, as well as my best friend, Rosie, and my husband escorted me down the halls a time or two!

I remained on a liquid diet until I farted…late the evening on my third day. Very long days of nothing but soup and jello. But that fart? Which was AWESOME because not only was my Mum’s face epic and unforgettable when I tooted, but all of the nurses were just as excited as we were, AND I was served a small meal of soft foods (diced chicken breast never tasted SO good!). Mum and I even had a laugh keepin’ track.

The next late-morning, I was able to poop (if you can call it that…I’ll spare you the details, but I hope my Mum is laughing when she reads this) and Iwas merrily discharged on Thursday, November 29, 2018.

There were bouts of the dreaded shoulder-gas pain, both at the hospital and at home. A few of them were scream-inducing memorable. And those are the worst moments I remember. Sneezes, coughs, and vomiting were equally unpleasant. As well as trying to get, and remain, comfortable for sleeping. When I got home, I mostly remained on my Tylenol pain management, with the exception of 1 Naproxen Sodium and Two Tramadol through the duration of 2018.

I was off of work for six weeks. And got a little better every day. I kept a running tally of milestones:

  • 11/28/18: Released from hospital and finally at home
  • 12/4/18: I can raise my arms above my head without feeling like I”m pulling my guts out of my incisions
  • 12/8/18: First sneeze since surgery: one sneeze, two sneezes, three sneezes!! SOOO PAINFUL!
  • 12/14/18: I can blow my nose without my guts hurting!
  • 12/17/18: I still can’t bend down and wash my feet, and it’s been 3 weeks since surgery…so I got a pedicure at a local salon. There was some disgusting dead skin!
  • 12/19/18: If I use the handrails, I can walk up the stairs like a normal! Slowly, but normal!
  • 12/20/18: I walked the entire mobile home park! It took over half an hour, but I did it!
  • 12/27/18: I drove!!!
  • 12/29/18: I lasted 10 days without needing to take a pain pill!
  • 1/3/19: I laid down on my side for just a few minutes! Soon: no more back-sleeping!
  • 1/7/19: I’m back to work!!!
  • 1/9/19: I can lay down on my stomach! Albeit for just a few minutes. But still!!
  • 1/17/19: as a fun note: bending or squatting or sitting for long periods still becomes very uncomfortable. So…I haven’t shaved my legs since before 11/26! Bwuahaha.

I cannot tell you how much better I feel since before my surgery. I haven’t had any of my pre-surgery pain. Not one! My bowel movements are (99.9% of the time) pain-free. The constant pain on the right and left sides of my lower abdomen are GONE. My December period was light and cramp-controlled with Ibuprofen. My back pain is gone. And I poop ALL the time.

And…I’m a pooping machine! I compared the first week of November poops to my January poops, both the frequency and the pain levels. My jaw hit the floor:

I now eat six small meals a day, instead of three large ones, to accommodate my new bowels. I also have severely restricted my alcohol intake. Where before I could enjoy 2 or 3 beers in a sitting, I can now only have one. Same goes for wine or cocktails. More than that and I’ve noticed I’m severely dehydrated and my gut’s not happy for days. So, I’ve become the ultimate cheap date: appetizer menu and one drink. And it’s been a marvelous trade-off.

I’m super grateful to my Mum for being with me for a week while I recovered. There’s just something so special about the healing energy of a Mum. And to my friends who came to take care of me after Mum left: thank you. ❤


The Bills!

Nobody’s favorite part…the money!! This has been my most costly surgery to date; not only because of the two surgeons involved, but the hospital stay after surgery! And my bills are still rolling in:

$224,476.41Hospital Facility Bill Insurance paid in full
$1,687Gyno Surgeon Bill Insurance paid in full
$2,082.19Pathologist Bill Insurance Payment Pending
(Pending)Colo-rectal Surgeon Bill
Insurance Payment Pending
$2,800AnesthesiologistInsurance paid in full
$2,250My co-payI paid in full
$233,295.60Total(updated 2/6/19)

Surgery Photos

Before I share all of the surgery and recovery photos, I wanted to share the photo I found the most amazing.

Back in July, Dr. K took a photo of my bowel with the 2 pink & red Endo lesions. In November, those same splotches had turned BLACK. In a matter of four months, the disease altered that much. I know that lesions come in a broad range of colors…but I didn’t realize they changed color or shape once they were formed! Nor so quickly! So, we’ll start with that! Be flabbergasted with me 🙂

But here are the rest of my surgery photos I received at my post-op appointments (click on them to enlarge):


Recovery Photos

Mum took a lot of photos while we were in the hospital (but funnily enough…none of her!). Here’s the Hospital Shenanigans:

And here’s a slideshow of my incisions from Day One to Week Seven!

If you’ve made it ALL the way to the end of today’s blog entry, you have my applause!

I’m eternally grateful to both my skilled surgeons and their staff; the insurance crew who expedited the approvals through the system; my Mum, my husband, my Seester, and my friends for not only helping me, but putting up with my grumpy-recovery BS; as well as my employers and my co-workers for allowing me to do this second surgery this year. 2018 was one hell of a ride. And this surgery could not have gone any better without each of you.

Let’s hope there’s no need for future surgeries!


Share Your Story: Mummy

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“Mummy” was 29 when she was diagnosed with Endometriosis.  Now 32, she shares her journey with us.  Mummy lives on the island of Antigua, and faces the struggles of limited options when it comes to healthcare.

Mummy’s Journey: I started getting horrible pains when I was around 25 years old and I did not realize what it was because I always took Advil painkillers.  They did help but I realize after my period was finished I was still feeling pain and my legs, I couldn’t walk, and just feel too tired.

You can say I visited all the Doctors mentioned in your blog. Dr. Roberts was the one who told me I might have endo. I did not know anything about the disease she said to do some research; I did. I felt like she was not helping me just putting me on contraceptives and I have to spend a lot of money every time I visited her. She would perform ultrasounds every time I visit which was pretty often and said she had not seen any cyst or fibroid at the time. I decided to stop seeing her because I felt that she was not understanding to my pain and so I traveled overseas to another Caribbean island where I saw a Doc.

He examined me and I did a few tests. I had a cyst on my left ovary. I could not stay on the island as I lived and work in Antigua. The Doc told me they had to monitor it (cyst) for three months.  Of course, I couldn’t stay so I came back to Antigua.

I saw Dr. Wynter and Dr. Mansoor I felt that they could not help me.

One day a friend of mine told me that Dr. Dean Martin was on ABS talking about the Endo.  I decided I was going to make an appointment to see him, in which I did and he told me after examining me with the pains I had, a laparoscopy was the best option to see what’s happening.

I did the surgery (four hours) of course he told me I have stage four endometriosis and a cyst that had ruptured.

I was placed on sick leave after recovery the pain definitely did not go away I had longer periods and worst pain the only good the surgery did for me is that I could have sex without feeling so much pain during or after sex. I felt like I paid a lot of money and was still in so much pain.  My job wrote me a letter to say I am always sick and they would reconsider my employment with them because I would always call sick. I was working with this prominent Security Firm and even though I worked there for 8 years and informed my boss personally about my condition it did not matter to him.

I would overdose on the painkillers so that I would not have to deal with the pain by falling asleep. My doctor told me I should not wait to have children because of the endo, I just felt so lost and I would just stay in my house and I did not want to come out to socialize with people or anyone. I would lay on my bathroom cold floor just to get relief. Somedays I feel like ending my life until I met this wonderful herbal doctor, Dr. Elra, right here in Antigua. I was feeling so much pain I end up at ER and my friend told me about him and I went and visited him he is amazing.  God is truly awesome.  Diet, plus colon cleanse and medicine healed me less than a month. I do not feel the pain, I am totally pain-free. It’s expensive, but Dr. Elra is the best.

**

I want to send a special Thank You out to Mummy for being brave enough to share her personal story, struggle, and victories with us today.  And I am so grateful you were able to find Dr. Elra and relief!  We hope it continues for you! ❤ And your quote, “I had to lay on the bathroom floor just to get relief,” struck me so hard – I think each one of us reading your story today have been there. Thank you for sharing.

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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.

Share Your Story: Mollie

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Mollie was diagnosed with Endometriosis when she was 20.  Now a year later, she shares her journey with us.

Mollie’s Journey: It all seems full circle to me after about 7 years.

At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.

She took me to a doctor after some time to see if I had an dietary issues and the doctor concluded I was lactose-intolerant. I tried that for a couple of years, of course never worked. My mom figured maybe they were my cramps beginning to start so at the ripe age of 14, I went and got birth control.

At 16, I ran to my sister’s room to tell her that I was really starting to be in pain when I went to the bathroom. She told me that was normal, I probably had gotten a UTI and that she had one before, it was no problem. Pretty soon I was getting UTI’s and yeast infections monthly or so I thought. I went to my primary care doctor, they prescribed me antibiotics. Still happened monthly.

I then went went to my gynecologist, she decided to put me on a different BC. Didn’t work. I explained to her how bad my cramps were getting even in between my period. Cue ultrasounds for cysts! Nothing showed up. Through 4 doctors, painful examinations, and countless “it’s normal for a girl your age”s, I kept going, hopelessly.

At 18, I went to college that came with new doctors and questions. By this time I had been “diagnosed” with chronic UTI’s. Finally, I went home over a weekend during my junior year where I met a new doctor. She asked me if I had ever hear of Endo. It was the first time the word ever left my mouth and now it’s part of my everyday vocabulary. I will never forget that meeting. She spat out all the worst case scenarios that happen to women with this disorder.

The gynecologist I had seen since I was 14 decided to do my laparoscopy before I could even call my mom. I told them I needed to talk to my parents. I got a call the next day that my surgery was scheduled for 2 weeks later! I have midterms?! Of course the first thing that crossed my mind because I had no idea what was going on. Google was my friend at the time and oh how scared I got in a short amount of time. I told my dad who consulted friends to find me a second opinion.

The next doctor confirmed and proceeded with my surgery and did a Endometrial ablation. Surprise surprise! I was back almost every week following the two week mark of my surgery.

This is where I felt crazy. My doctor told me she had sorted it out. That it was done. The endo was gone. The pain is in my head because I had some sort of PTSD. I told her I was worried about kids. She told me I needed to see a therapist. I told her it feels no different. She told me my body wasn’t “used” to it yet. I was horrified. I left the doctors office wiping tears from my face.

That’s when I found Bloomin’ Uterus and this wonderful support group along with Nancy’s Nook. I decided to schedule an appointment with Dr. Orbuch. She truly has been my angel in the dark and erased my resentment of myself. I cried tears of happiness in her office as she looked over my medical records. She explained to me that my Endo was very much still there and that the ablation had a “plastic melting” type of effect. That my pain was normal. That I need to go see a fertility specialist. That I need ultrasounds and physical therapy.

Most of all she gave me hope.

Two appointments later, I have been officially diagnosed with Endometriosis, Interstitial Cystitis, and Pelvic Floor Dysfunction. I know have excision surgery scheduled for December 11th and couldn’t be happier!!!

Words of Advice:  Trust yourself and your body. You know it better than anyone else. There will be many doctors, family, friends, and strangers that try to downplay everything you are feeling but you are a warrior.

The Last Word:: Most people will say I am too young to be vulnerable on social media talking about the female anatomy and to be in a support group but I think that is where my strength comes from. If anyone at all needs to talk to someone, I am always here!

If you would like to email Mollie, please feel free to do so here.

I want to send a special Thank You out to Mollie for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery!  And please let us know if you need ANYTHING during your recovery ❤

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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.

Share Your Story: Diane

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Diane shares her Endometriosis journey with us today.  And she’d like to remind us all when life hits us too hard and we’re stuck or immobile…we have to start somewhere. One step at a time.

Diane’s Journey:  So, I’m officially diagnosed with chronic pelvic pain, recurrent peritoneal cysts, and precancerous cervical cells. I did have an exploratory lap in 2016, to remove suspected ovarian cysts. They turned out to be peritoneal, and I also had “extensive adhesive scar tissue”. Endometriosis was added to my records at that point, but I was seen at a teaching hospital. The residents that saw me and performed my surgery never sat down and discussed what they found.

I went back to work, happily unaware. I thought since the cysts and adhesions we’re gone, my pelvic pain was through. For context, I work as a CNA. 8 hours on my feet running from room to room and lifting human beings bigger than me. It took two weeks back to realize I was mistaken.

So, back at home, trying to focus on my kids, home, and health. In between the year and a half of appointments with residents, different ones with different opinions each time, I fell into a good old fashioned depressive episode. I hurt all the time, I was trying to take care of two special needs children (my daughter has ADHD, severe anxiety, and a fine motor skills delay, and my son has cerebral palsy), trying to keep up with the housework, and missing the adult socialization and feeling like I actually contributed to society.
I started working with a counselor after being diagnosed with adult ADHD and major depressive disorder. In the middle of all this, I had an abnormal pap. Went back for the colposcopy, thinking nothing of it. Not my first rodeo and usually the colposcopy came back negative. This time it didn’t. One LEEP procedure later and I was being referred to a new gynecologist for a hysterectomy consult.

I now know that the hysterectomy won’t cure my endometriosis, but it will stop the recurrent peritoneal cysts that my new DOC says are fed by my ovaries putting off estrogen. It will also drop my risk of cervical cancer to zero, as the cells are still just on my cervix.

I’m scheduled for next month. I’m having a total abdominal (darn scar tissue, again) with removal also of my ovaries and fallopian tubes. I will be in menopause at 34 years old.
I am also working through a not quite midlife career change. I’m going back to school to be a special education teacher.

So, endometriosis and related conditions have changed my course, but they’ve also pointed me towards my passion. Don’t get me wrong, I love taking care of people, especially my geriatric patients.

But I’ve worked with special needs kids for years, and now have my own personal experience to bring to the field. Teaching will be a less physical job for me, but I believe a more rewarding one also.

**

If you would like to email Diane, please feel free to do so here.

I want to send a special Thank You out to Diane for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery and recovery! Please keep us posted.

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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.

Share Your Story: Pam

Untitled-1 copyPam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us.

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

Fast forward to September 2018, and last week I had my ovaries and tubes removed. I was shocked to hear I had endometriosis plastering my ovaries to my pelvic wall. Now as I am researching I am reading that it is possible that the undiagnosed leg pain I have been suffering with for over 8 years may also be related!

I am not in the medical field but am pretty savvy, so much it is rare that I go in and am not asked if I am a doctor or nurse. My kids and I have had lots of issues and I have been there with them for every step.

So how could I be so ignorant on this?!!

I have seen every kind of doctor you can imagine. I take an epilepsy drug for bilateral pain on the outsides of both lower legs. The last Doctor said just be happy you have a drug that works and stop looking.

I am praying as I heal from surgery, my pain in my legs will go away.

Words of Advice:  A hysterectomy doesn’t resolve endometriosis. I guess I was naive in 1999; were the doctors also?

The Last Word:: Don’t listen to any doctor that says stop looking! I am going back to every doctor if my pain resolves, after I give GOD all the glory, and telling them it was endometriosis, and don’t forget to ask about that!!!

If you would like to email Pam, please feel free to do so here.

I want to send a special Thank You out to Pam for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing recovery! And, yes, if your pain doesn’t resolve – keep pushing for answers.  They’re out there somewhere!  And if it DOES resolve…absolutely give God all of the glory.  Please keep us posted.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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.

Share Your Story: Ami

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Ami was diagnosed with Endometriosis when she was 47 years old.  Now a year later, she shares with us:

Ami’s Journey: One year ago I experienced a worsening pelvic prolapse (following a uterine prolapse years ago) and simultaneous debilitating sciatica. All doctors insisted the two were unrelated. Although muscle atrophy contributed to both. I underwent several months of physical therapy and 2 epidural steroid injections to treat the sciatica and then prolapse repair in December. During that Davinci procedure, the surgeon (said in passing) that he removed some endometriosis. I have recovered well, am stronger than I’ve been in years, but still have sciatic symptoms that seem to be increasing. I am starting to wonder if endometriosis has anything to do with it all. Thank you for your writing. I will bring this up with my gynecologist and ask some questions of the Urogynecologist who did my surgery. Ami

If you would like to email Ami, please feel free to do so here.

I want to send a special Thank You out to Ami for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing treatment.  And, yes, Endometriosis may very well affect your sciatica or surrounding nerves and muscles.  If you haven’t already found them, we have several blog entries addressing it.  Please let me know if I can help in any way!

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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.

Share Your Story: Daniela

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Daniela was diagnosed with Endometriosis when she was 22 years old.  Two years later, she shares her Endo journey with us.

Daniela’s Journey:  Hi everyone, my name is Daniela and I was raised in a small town near the border in Mexico and I am 24 years old. I had my first period when I was 9 and I remember that day like it was yesterday because it haunts me. I remember the face of my mom and grandma as if I was going to die. My childhood was over at that moment my body started to change drastically.

Since my first period the pain was something unbearable, I remember going to the ER every time I had my period. Nothing helped so when I turned 13 years old my mom decided to take me to a GYN and to our surprise I had a bunch of small cysts in my ovaries which were causing me so much pain. My doctor at that time decided that I was too young for any treatment or surgery and that I could bear with the pain until they were big enough for surgery.

I went on like this for years until finally I went to the right doctor and the minute I said my symptoms he started the paperwork for a laparoscopy. I had 4 cysts, and one “chocolate” cyst in one of my ovaries, and a crazy amount of tissue growing everywhere. After surgery everything went downhill for me, he prescribed me with Depo Provera, the side effects where horrible I had constant migraines and I wasn’t feeling like myself anymore. They stopped the treatment and I went on to continuing birth control pills. They worked!

And I was so happy everything was going great until after 6 months the pain was back and it was worse than ever I could not walk, eat, work, I was miserable.

My last option since I’ve tried everything was Lupron, induced menopause. Bodies react to treatments very different but in my case it was hell, the migraines were back, the pain, the hot flashes and I was emotionally unstable. After almost a year of the treatment I decided to stop, my body needed a break from all the chemicals.

I started on the pill again…

but I feel hopeless,

I feel no one understands what we go through and how exhausting it is to hear doctors tell me to change my career to something easier,

to change my life completely and I get it

but I don’t think I am ready to give up everything yet.

I am running out of options and I don’t know if a second surgery would even help…

Words of Advice for Us:  Don’t give up!! In my own experience, I cope with my pain and anger towards this disease by focusing on my friends, my boyfriend, and my career. I chose I very hard major (Architecture) as I’ve been told by a lot of doctors, but it is the only thing that keeps me going. Find something that motivates you.

If you would like to email Daniela, please feel free to do so here.

I want to send a special Thank You out to Daniela for being brave enough to share her personal story, struggle, and victories with us today.  I am sorry to hear your pain has returned.  But, in my non-medical opinion – if you can find a physician to do an excision surgery, a second surgery may help!!  My track record is an excision surgery every two years…If you need anything…ANYTHING…you reach out to me here, hun.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

 

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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.