endometriosis Archives - Page 11 of 16

Angela’s Lupron Story

Published on August 28, 2013

9.9K views

In June 2006 a 10cm endometrioma was found on my ultrasound. I researched as much as I could about endometriosis as I was told it was a possibility that I had it. I was sent to my local Gyno and she told me she wanted to put me on Lupron and that nothing could be done even if I had Endo. I refused. I didn’t want to be put on a medication if it wasn’t proven that I had endometriosis. To me, that was really stupid on the doctor’s part. I did my research. I knew it was used for endometriosis, but unless I was diagnosed, I was NOT going on Lupron.

I searched high and low and thanks to the worldwide web I found two specialists in Toronto for endometriosis, so I had my doctor send the referral over. He found the recto-vaginal cyst by rectal and vaginal exam that had been missed for 14 years. I was happy that finally they had found something. I knew it wasn’t all in my head for these many years. He sent me to his protégé.

Post Surgery Lupron

I was on the operating table three months later in June 2007. After my surgery I was out of it. The surgeon supposedly talked to me but I was not coherent at the time so his intern was told to come in. I was told that Lupron was the best medication for the severity of the disease I had and she gave me a prescription. I felt like I had to take it. I just had surgery and she was telling me it was the best option and at the time. The specialist, the Gyno and the GP all told me that “Lupron suppresses endometriosis.”

From June to September 2007, I took the monthly injections and I remember the first month feeling somewhat okay. I guess I put most of the blame for the side effects on my recent surgery. After two months, depression started to kick in and a major fibromyalgia flare as well. My bones and joints were so sore. My muscles ached like crazy and that was with the Add-back therapy. I would get sharp pains to the pelvis that would leave me breathless. On the plus side, no period. After three months I went back on my regular birth control pill, Marvelon. The transition went well.

Lupron Again and Again

In June 2008 I was told to go on Lupron again. I must have been a glutton for punishment because I did, for another three months of monthly injections without the Add-back therapy. My mood was extremely out of control. I was angry and agitated. The Lupron injection was causing insomnia. My moods were all over the place and the pain intense, however, there was no bleeding or Endo pain. After this, I went right back on Marvelon.

In 2011 I went back and forth from the Endo specialist who did my surgery and pain management clinic. I contracted PID. I felt that there was major damage from the PID plus Endo. The original surgeon said there was fluid in the cul-de-sac and told me I had to go on Lupron again. He said if the pain and fluid went away it was Endo and he would operate and if it didn’t, it wasn’t Endo.

So in October 2011, I had one injection that lasted for three months without the Add-back therapy, per his request. I didn’t want to, but the pain was too much to take, so I did it anyways. Well, this was the worst experience yet because even if I wanted off of Lupron after a month, I couldn’t because it was a 3 month injection. I was screwed. The first month was okay, but then I became extremely depressed, no sex drive, chronic headaches, nausea, no ambition, and insomnia.

I went back after three months. He didn’t do an ultrasound and because my pain wasn’t gone he said it wasn’t Endo; it was neuropathic pain syndrome. Oh Lord. He really pissed me off. So back to the pain management clinic to be a guinea pig for another year before she would agree to operate.

In February of 2013 I had surgery again and Endo WAS found.

What I Learned

Lupron did not suppress my endometriosis. The doctors either did not know this or prescribed it anyway. I realized after my first injection, that the medical staff at the clinics also did not know how to use Lupron. They had to read the instructions on the box, and even then, would prepare the injection wrong. The instructions clearly say “DON’T SHAKE.” It is supposed to be mixed by rocking it back and forth slowly and gently. I noticed that when they mixed it improperly, the Lupron side-effects came on much more quickly and much stronger than when they mixed it properly. I don’t know if this is coincidence or not.

If I had known what I know now about Endo and Lupron after speaking to Dr. Redwine, I would never have taken this medication to begin with. Nothing suppresses Endo, no medication, no diets etc. If it is not all excised, it will continue to grow, period. I went through years of hell because the doctors did not know what they were doing. Please don’t make the same mistake I did.

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

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Endometriosis After Hysterectomy

by Rosemary Finnegan

Published on August 27, 2013

22K views

My name is Rosemary and I have been dealing with endometriosis for the past 21 years.

I had my first laparoscopy in 1992 due to sudden onset of pain from a ruptured ovarian cyst. They found endometriois on the right side. Over the years, the endometriosis spread to the left side, bladder and intestines.

I had a total abdominal hysterectomy in 1995, when I was only 28 years old and only two months after having my youngest daughter. My daughters are miracles and I am extremely lucky to have them despite these issues. I was convinced to have the hysterectomy after the 6th laparoscopy for endometriosis. This was after the right ovary, tube and appendix were already removed and I had tried many techniques for pain management including acupuncture, acupressure, hormones, Lupron, Depo Provera, meditation and many strong medications. I would try anything, I told one doctor that I would sacrifice a chicken in the corner if that would help. Unfortunately the pain was relentless. It was and is a constant, stabbing, twisting pain.

During the hysterectomy they found Stage 4 endometriosis all throughout the abdominal cavity. Unfortunately the doctor didn’t remove the endo during the surgery. They just removed the left side ovary and tube, uterus and cervix. The day after the surgery I was given Premarin. The pain returned with a vengeance within 6 months. This is when the real “fun” started. I had to find a doctor that understood endo after hysterectomy. I have had 14 more surgeries since the hysterectomy. In each one and over ten years after the hysterectomy they found live endometriosis. The hysterectomy did not resolve my endometriosis. The endometriosis was deep in the peritoneum, along the bladder, on the intestines and it kept returning. After each surgery I would get about 12-18 months of relief.

I worked with many different doctors from OB/GYN’s to renowned reproductive endocrinologists and general surgeons who specialize in adhesions. During each surgery they found many thick adhesions gluing my insides together. I had my last surgery in Atlanta last year at the Center for Endometriosis Care and they were fantastic. I had relief for about 13 months. Unfortunately the pain has returned.

I have returned to pain management doctors. This is such a frustrating disease. I have had many doctors tell me I was “just stressed,” or that because I am a single Mom with two daughters, I’m just depressed and the pain is in my head. I have also had amazing doctors who have listened and explained the disease and how they can help. I have had countless tests that show nothing and yet every laparoscopy has shown either severe adhesions or residual endometriosis or issues that need to be corrected.

The best advice I can give is trust yourself! You know your body better than anyone and if you aren’t getting a doctor to listen, find another one! Be your own advocate and educate yourself on this condition. There has been tremendous progress made in the last 10-15 years. I am sure they don’t give Premarin right after hysterectomy anymore and I would hope they are removing the endometriosis during the surgery and not leaving it to grow as they did with me.

There are a whole list of issues with not being able to take hormones. I have tried many substitutes including soy and phytoestrogens and some combinations work better than others. There are some very good holistic treatments and everyone has a different experience.

I hope this has provided some insight. I am not a medical person, I am actually a finance executive and through research and articles from great sources I have learned a lot about endometriosis. There needs to be more awareness and discussion on this, as there are way too many women suffering. Good luck and God Bless!!!

Participate in Research

Hormones Matter^TM is conducting research on the side effects and adverse events associated with Lupron. If you have taken Lupron, please take this important survey. The Lupron Side Effects Survey.

To take one of our other Real Women. Real Data.^TM surveys, click here.

To sign up for our newsletter and receive weekly updates on the latest research news, click here.

Recurrent Miscarriage

by Philippa Bridge-Cook, PhD

Published on August 7, 2013

6.7K views

When I was pregnant for the first time, one night very early on in the pregnancy, I had a dream that my baby was going to be a little boy with blond hair and blue eyes, a little mini version of my husband. Eight years and six miscarriages later, I did give birth to a little boy, and oddly enough, the consensus is that he looks just like my husband. Those eight years before our son was born were filled with emotional highs and lows, and I still ask myself: why did I, and so many women like me, end up with so few answers about my miscarriages?

Recurrent miscarriage, defined as more than three consecutive pregnancy losses, affects about one percent of women. Although there are some known causes (the most common is antiphospholipid syndrome), which have effective treatments, for 50 percent of women with recurrent miscarriages, all diagnostic tests are normal and no cause can be found. In this group of women with unexplained recurrent miscarriage, the prognosis is fairly good, as many of these women will eventually have a successful pregnancy without any treatment. However, research suggests that the group of women with unexplained recurrent miscarriages may actually be made up of two groups. In one group, the miscarriages are due to chance alone, and women in this group have an excellent chance of eventual success. In the other group, there is an underlying problem that is not identified by current clinical investigations, and this group has a much poorer prognosis.

During the time I was trying to have a baby, I saw four different doctors (three gynecologists and eventually, a reproductive endocrinologist). I had many tests, and they all seemed normal. I was a relatively healthy 28 year old. I was told that if I just kept trying, I might eventually be successful. Although that approach is understandable given the potentially good prognosis for some women, it was difficult for me to believe that it was true, and it was even more difficult to consider getting pregnant a fourth time without trying some sort of treatment. Instead of trying to get pregnant again, we decided to adopt, and my husband and I were lucky enough to adopt two newborn girls, 15 months apart.

As the girls got older, we decided to try to get pregnant again, and see if my doctors could offer any new approaches. It felt to me that if I at least tried something different, that I could have some hope for a different outcome. My doctors tried various fertility treatments with the rationale that perhaps just increasing the number of embryos would result in one that could “stick.” I never got pregnant on fertility treatment despite a seemingly good response to it. Because I had always had painful periods that were worsening as I got older, I asked every doctor I saw about endometriosis and every time was told: “Endometriosis causes infertility. If you are getting pregnant, you don’t have endometriosis.” During that time, I had three more miscarriages.

Eventually I made my way to a reproductive endocrinologist. She agreed with my other doctors that there was no apparent reason for my miscarriages. However, by that time I had a large mass on my ovary, and I had laparoscopic surgery and was diagnosed with endometriosis. According to the scientific literature, there is insufficient evidence for a link between recurrent miscarriage and endometriosis, although it’s possible that many women with recurrent miscarriage have undiagnosed endometriosis, due to the assumption most doctors make that women with endometriosis are always infertile. My doctor did not think that my endometriosis was related to my miscarriages. However, she did decide to treat my miscarriages with a “cocktail” of medications: heparin injections, progesterone, low dose prednisone, and low dose aspirin. The rationale was that there was probably some undiagnosed problem causing the miscarriages, and the cocktail could cover a range of potential causes such as hormone imbalance, autoimmune issues, and thrombosis (which is known to be associated with recurrent pregnancy loss, through antiphospholipid syndrome).

The month after my endometriosis surgery I was pregnant again. I immediately started taking medications once I found out I was pregnant. Two days before Christmas we saw the baby’s heartbeat by ultrasound, but on Christmas morning I started bleeding. Six long weeks of watching and waiting began—I had a subchorionic hemorrhage, bleeding between the gestational sac and the uterus. Although this is not uncommon (3.1 percent of pregnancies), with my history it was worrisome, and I was on limited activity or bedrest until it resolved at 13 weeks. I could barely believe it when my son was finally born, healthy and full-term.

My doctors said that the endometriosis surgery had nothing to do with the fact that I finally had a successful pregnancy, even though the coincidence of having success only immediately after that surgery makes me wonder. Or perhaps my success was due to one or more of the medications I took during the first trimester—the recurrent miscarriage cocktail prescribed by my doctor. Having been diagnosed with a bleeding disorder recently (see my story here), five years after that pregnancy, I now realize that the heparin and aspirin were exactly the wrong medications to give me and probably exacerbated the subchorionic bleeding. But maybe the prednisone or progesterone, or both, were helpful. Or maybe it is just that I ended up being among the percentage of women with unexplained recurrent miscarriages who will eventually succeed without any treatment.

As a scientist, I wouldn’t normally be inclined to agree to the sort of treatment I ended up receiving for my miscarriages: they were hit or miss treatments, some of which were untested for safety during pregnancy (the prednisone), and all of which had no proven efficacy from clinical trials for treating unexplained recurrent pregnancy loss. However, as a woman with six prior pregnancy losses, I probably would have tried anything I thought had a hope of helping, as long as the risk seemed minimal. More research into this area is critical, so that other women don’t have to decide whether to choose treatments with unknown side effects and effectiveness, or no treatment at all, with the emotionally devastating risk of another miscarriage. Unfortunately, such research does not seem to be a high priority for our society.

The Road to Baby: Fertility and Endometriosis Treatment

by Kelsey Chin

Published on August 6, 2013

7K views

Waning Fertility

I have always wanted to be a mother. Growing up around my grandmother’s day care, I relished taking on nurturing roles from a young age. I have always enjoyed spending time with children, reading to my younger cousins, and making up games for us play. I even earned my degree as an Early Childhood Educator, and have dreams of someday writing children’s books. My decision to work as a nanny while I finish my graduate degree has changed my outlook on my career goals, and I now hope to open my own preschool in the future. Caring for children has always come naturally to me, and has become my passion. At the age of 28, I am now four years past my peak fertility, according to several reproductive endocrinologists I have seen. Even though I am young, in the area of reproductive medicine, I have already lost the most fertile years of my life. This comes as no surprise to me. Knowing I have endometriosis, I expected that I would have trouble getting pregnant. I never expected how intense my road toward baby would be.

Endometriosis and Fertility

My husband and I were already together when I was first given my tentative diagnosis of endometriosis at the age of 22. In the same breath, my doctor assured me that she would get me pregnant, “even if we have to do in-vitro fertilization (IVF)!” I nearly fainted. Right then and there. I had barely graduated from college, and was still years away from starting a family! My fertility loomed over my relationship with my husband for nearly 5 years before it became a tangible part of our life together. My first laparoscopic surgeon informed us at my post-operative appointment that after trying birth control pills, progesterone, Lupron, and surgery to manage my then-stage III endometriosis, I was out of options and needed to get pregnant immediately.

My husband and I were given the choice to start trying for a baby, or go back on suppressive therapy, meant to eliminate estrogen and stall the growth of the disease. Pregnancy and breast feeding can offer a period of relief from endometriosis pain, since the body does not menstruate. For me, suppressive therapy options were Lupron or Mirena, both invasive and potentially dangerous treatments. I did not want to go back on easier methods, including progesterone pills, which my body could not tolerate. I had already tried progesterone for four years, and had suffered medical and emotional side effects. There was no easy choice.

I had wanted to start a family for years, but my husband and I were not in a place financially or otherwise to get pregnant, so we chose to go with Lupron while we got our ducks in a row, and told our families. Unlike my first experience with Lupron injections, this time, the Lupron did not help; I was still in excruciating pain during my period, and I even lost some hair and bone density. With our options at an end three months later, we started trying to conceive.

Although I was excited about becoming a mother, the following months were some of the most stressful of my life. With the looming return of my disease while being “untreated,” the immediacy of our need to conceive was overwhelming. When most couples decide to start a family, there might be a period of excitement, some adjustment, and taking the process slowly, while hoping that a positive pregnancy test (or Big Fat Positive to us online groupies) might happen easily. I jumped straight into charting my basal body temperature, cervical mucus, and peeing on sticks to see if my luteinizing hormone had triggered ovulation. I bought a stack of pregnancy books, and a few hard-to-come-by infertility books. So much for romance! I soon began using an app on my smart phone to track all the data for me, which sent me into an obsession with checking my chart every hour (for no reason whatsoever), in the hopes that today might be the day my precious egg would pop. But it never did.

Trying to Conceive: The Complications

Two months into my trying to conceive (TTC) journey, my obgyn suggested a reproductive endocrinologist. Most women get 6 months to a year before seeing a fertility specialist, but my doctor wanted me on the fast track. We were using a pregnancy as a treatment, a chunk of time without period pain, so we had no time to delay. One late evening visit later to a specialist at Brigham & Women’s, I was diagnosed with an anovulatory cycle (no ovulation), and given 5 days worth of the fertility drug Clomid to begin taking once my next period arrived. Five days after my 28^th birthday, I started my first fertility treatment.

Unfortunately for me, the RE who prescribed these drugs did not monitor my hormone levels or the size of my follicles. I was told how to time intercourse, and to call the office when I got a positive pregnancy test or started my period. I ended up developing right side abdominal pain, something I was fairly accustomed to, and which the resident in my RE’s office found to be a nearly 5cm complex cyst. To my dismay, the RE could not fit me into her schedule for over a month. I was left to wait and see what happened. When my next period arrived (no BFP for me), so did the most intense pain and bleeding I had ever experienced. After nearly fainting from the blood loss, and doubling over in pain, a trip to the ER confirmed that the cyst had ruptured. The nurse at my RE’s office suggested taking a month off of fertility drugs to heal, then starting up again, but could not fit me in for an appointment for several more weeks.

I was shocked by how unimportant I seemed to this doctor. Why didn’t she feel like a ruptured endometrioma might warrant squeezing me into her schedule? Wasn’t my advanced disease serious enough? I guess she figured that was my obgyn’s job, but she had prescribed the fertility drugs that sent my hormone levels soaring, likely causing a flare in my endometriosis. Did she not feel she was somewhat responsible for my care? I felt abandoned. I never went back to that RE.

I decided to take that month, and do some research of my own. My obgyn suggested IVF when I saw her to follow up about the cyst. It was all happening too fast! I had always wanted to avoid IVF, which I found too invasive and highly taxing. Not to mention I was in my last semester of graduate school, and doing an internship. At this point, my husband and I had only been trying for four months. Most couples get three times that amount of time before considering daily injections, multiple embryos, and possibly life-threatening complications. Tears rolled down my face as I read books about other women’s experiences with IVF, and spoke to others like me on fertility forums about the process. I was not ready for this.

Excision Surgery

I began researching endometriosis and excision surgery, a technique few gynecological surgeons can perform adequately. It involves cutting the endometriosis out like a cancer to ensure that all of the disease is completely removed. After immersing myself in endometriosis literature and surgical sites, I considered several excision specialists from all over the US. Eventually, I found a plan that would work for me, and a doctor I felt I could trust.

I flew to St. Louis in June to have an excision surgery, despite obvious contention from my obgyn and the IVF specialist she recommended in her practice. They could not understand why I would fly halfway across the country when there were plenty of doctors here. My obgyn’s argument was that my first surgery had complications, and my recovery period was long. However, my gut told me that I had made the right choice. In the end, my surgeon found that my disease had progressed rapidly in the 11 months since my first surgery, far beyond anyone’s expectations. Besides the involvement of my bladder, bowel, ureters, rectum, appendix, and pelvic lining, the disease had ravaged my reproductive organs. Both of my ovaries had endometriomas, were being pulled behind my uterus, and attached to the back of my pelvis. My left fallopian tube was kinked shut. Adhesions, sticky bands of scar tissue, had distorted my anatomy to the point where nearly all of my pelvic organs were stuck together. My surgeon worked for six hours, even reconstructing my ovaries to avoid leaving raw tissue exposed and vulnerable to more damage. At my post-operative appointment, we discussed my options for fertility, and made a plan.

Road to Baby – Back on Track

Now, 10 months after starting on the Road to Baby, we are trying on our own naturally, without the help of fertility drugs. My first and only experience with pumping my body full of hormones was enough to turn me off of it completely! For me, the experience caused real damage to my body, and I am not eager to do it again. It feels like we are starting over, with a fresh canvas. We found a local fertility specialist who comes recommended by endometriosis patients like me who believe excision is the answer to this disease. He seems on board with our decision to wait a little longer before considering drastic measures. IVF may still be an option for us if we continue to struggle, or if there is any male factor infertility, something none of my previous doctors even bothered to test for. But for now, no one is pressuring us to jump in a race car and speed toward the finish line. We have time to take in the scenery and enjoy the ride together.

And that’s exactly how it should have been all along.

About the Author: Kelsey is an Early Childhood Educator and blogger from the Boston area. She chronicles her journey using sewing as a positive outlet while living with chronic pain and Stage IV Endometriosis. Diagnosed at 22, Kelsey has spent six years learning about her disease, and has recently become active in Endometriosis research and advocacy. She is a published poet who dreams of writing children’s books, and opening her own preschool that supports reading development. To read more about Kelsey’s daily dabblings in sewing, as well as recipes, preschool curriculum ideas, and information about endometriosis, visit her blog at www.silverrosewing.blogspot.com

The Sisterhood

by Lisa Graham

Published on August 2, 2013

4.5K views

This disease is fraught with stress and strife
Not your ordinary woes occurring
When sad women go under the knife
With no hope of pain or struggle ceasing

Further still the creeping curse has grown
Theoretical, semantic splits and factions
Until those who formerly had known
True sisterhood, must bear division.

Each facing the same battle without pause
Each stretched beyond limit, each with cause
Each of us, each maiden, wife, or crone
176 million women, all very much alone.

Endometriosis won’t depart
Just because we’ve settled on the terms
We’ll agree to use in future to impart
Just how, to whom, and when it will return.

Lisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide. She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables. She is currently pursuing a Master’s Degree in Project Management.

Adhesions – the Pain, Suffering and Frustration

by Roxie Fiste

Published on July 30, 2013

7.8K views

My personal struggles with adhesions began shortly after a partial hysterectomy at age 33. Our daughter was just a toddler but there would be no more babies now that my uterus, riddled with growing tumors, had been removed. For over a year I had fought with my body, suffering with double menstrual cycles, pain, even having contractions as my body thought I was pregnant again! It took five pregnancy tests to prove to the doctors that I didn’t have a tube pregnancy going on. The first surgeon I had tried to save my uterus but the fibroids had grown inside as well as through its walls. He carefully cleaned off the endometriosis gathered around my ovaries believing they would function normally after surgery. It took about six weeks, but my energy levels eventually picked up to the point I actually felt good again.

My husband gave me a membership to a nearby health center as my healing process was ending. Being a full time mother and housewife did keep me very busy so working out gave me a couple of hours a week to clear my mind. Don’t get me wrong, I loved being a new mom, watching our daughter grow and change each day, but those few hours were greatly energizing. Eventually, I was even able to return to a little stargazing in late evenings after our daughter would go to bed. Life seemed to actually return to normal.

Six months later something began happening to the Me inside. Outwardly, I was unchanged, but emotionally and mentally I was becoming lost. The feelings were strange, frightening, as the real me seemed to drift off into the distance. It was after a rigorous workout that I felt something flopping around in my lower abdomen. It wasn’t painful until my GYN did a check which nearly caused me to pass out. Another surgery was scheduled which resulted in my left ovary, the size of a small orange, being removed. The surgeon reassured me that once I healed everything would be “normal” again. He had cleaned up my right ovary and removed some tiny adhesions. Life improved for about a month. For six months after that I began experiencing mood shifts, panic attacks, night sweats and two episodes of convulsions. My GP sent me to see a specialist to see if anything could be done for my mental state. This new doctor immediately set up an appointment with my GYN again. Something was physically wrong with me which was causing a disruption in my emotional and mental states. Surgery was once again scheduled. This time the doctor found endometriosis, adhesions and a dead ovary. After its removal I was placed on estrogen which completely righted the mental and emotional states. My family thought I was home free!

While working out about seven months after my previous surgery, I felt a burning sensation deep in my lower back. I tried various exercises, massage, whatever would help my back improve. Nothing worked. It became a rather tedious nightmare just trying to do laundry, chase a toddler, cook a meal, etc.! How frustrating to have the deep, fiery pain continue to spread from my back to all the way around my lower abdomen! Someone we visited suggested it might be adhesions. She suggested that I go back to my GYN. By the time this fourth surgery came I could barely stand up straight. It had gotten hard to breathe and I could no longer sing in the choir. My surgeon found so many adhesions a laser could not be used. It took him 45 minutes to remove the enormous number of adhesions using a scalpel. He was worn out and frustrated by the way my body was producing them so before closing me up he placed special mesh along my abdominal wall, while trying to protect my intestines. To complete his attempt he added small implants of cortisone pellets into the areas covered by the mesh. Upon waking after this particular surgery I was quite nauseous. Multiple muscle spasms hit within hours of coming out of the anesthesia as well. The nurses were quite good at keeping me set up with Phenergan and piroxicam! One stopped the nausea and the other stopped the muscle spasms. It was not my normal way of dealing with pain – I preferred to take a couple of Tylenol 3’s, not injections of strong meds. Thankfully, after a couple of days in the hospital I went back to taking tablets instead of shots. My breathing returned to normal as well as the ability to take deep breaths to sing within a few days of surgery. This time my husband and I fully believed my life would get back on track.

For about a year I remained free of adhesions, going about normal activities, mommyhood, spontaneous adventures with my family. Within weeks of the anniversary of that last surgery the ring of fire returned. This is what my GYN called the ring of adhesions rapidly growing in my body. Over the next ten years I would have six more surgeries for adhesions. There were years I barely weighed 84 lbs before surgery. Other times I weighed as much as 105 lbs – my body just couldn’t adjust to the physical intrusions of the scar tissue.

In 2002 I had what would be my very last surgery for adhesions. There were a couple of complications which made healing more challenging – a hematoma in my abdomen caused searing pain and a near double surgery, (thankfully a specialist released me saying the hematoma would resolve on its own), and a serious bout with Epstein-Barr virus slowed healing to a snail’s pace. It took over a year to recover from the EBV. Looking back it is quite clear that my immune system was worn down, plus my vitamin D3 levels were very low, most likely from all of the surgeries I had starting, with my first surgery mid-pregnancy through 2002. Twelve altogether – not a world record, but definitely ENOUGH!

176 Million Reasons

by Lisa Graham

Published on July 26, 2013

4.3K views

I have a disease which cannot be described-
Its symptoms vary and its cause is unknown;
Doctors routinely mistreat it to the dismay
Of 176 million women worldwide.

As women we are captive to this farce.
The promised cure an enigma, a cruel mirage.
Young girls not yet women left hollow,
Emptied of their organs, told to smile wider.

We find that diagnosis leads merely
To more confusion. There is no
Medical consensus. We are sheep,
Dosed and herded, penned together.

We are the women that doctors fear,
we stumble in crying, we live with pain.
Nobody wants us to say what we need.
The stigma is worse than the disease.

Lisa lives in Homer Alaska with her amazing husband, and is an advocate for endometriosis awareness, education, and higher standards for women’s health worldwide. She works in Quality Assurance, and she dreams of saving the world with poetry and organic vegetables. She is currently pursuing a Master’s Degree in Project Management.

Endometriosis and Adhesions

by Angela Wice

Published on July 24, 2013

9.3K views

In 2007 when I was finally Diagnosed with Stage IV Endometriosis I wasn’t expecting anything but “a diagnosis”.

When I spoke to the attendee after my surgery she said that there was massive scar tissue from a previous bowel surgery I had when I was seven years old. It had worked its way all the way up to under my ribcage. It took an hour to just cut that all down and that was just part of my Endo surgery.

My entire pelvis was frozen solid with adhesions. Everything was wrapped around my uterus including both of my ovaries (kissing ovaries). To this day I always find it funny that through the 10 or so ultrasounds and transvaginal ultrasounds they kept saying they saw my ovaries with “certainty,” even though each time I watched them struggle to find them.

From 2010-2012, I spent the years protesting adhesions on my bowels and bladder causing painful sex, bowel movements and urination. I went back to my surgeon at least three times. My surgeon told me I was fine and there was no endometriosis. Then on the next visit he said there was fluid in the cul-de-sac and told me to take Lupron. He said, if it goes away its Endo, if not then it’s not Endo. I went back a month later with no change in the pain but he didn’t do another ultrasound to see if the fluid was still there. He just said “It’s not Endo, its Neuropathic Pain Syndrome.” Needless to say I told him off and got an appointment with the Wasser Pain Management Clinic in Toronto. The doctor wanted to try me on different meds. (I was on Visanne which made me suicidal, gave me chest, neck and back acne and severe abdominal pain and Amitriptyline which made me really groggy, crave carbs and gain weight). She wanted to switch me to Gabapentin to see if it would make a difference. None of the medications help. If anything, the meds they gave me made my symptoms worse.

By the time I made it to the pain clinic, I was doing three enemas a week just to have a bowel movement and to not be in pain. I had a another colonoscopy and as usual it showed no signs of anything. They told me my pain was IBS and Endo. I had all the signs of interstitial cysititis (IC) but the cystoscopy showed no signs of inflammation in the bladder. So again the wait continued. I was peeing in my pants because I had no sensation to pee at times, then other times the pain was so intense I would vomit and when I made it to the toilet I couldn’t pee. The pain was out of this world. It was interfering with my life and job in a big way because I couldn’t go anywhere if I wasn’t near a toilet in seconds. I was peeing 60+ times a day at this point.

December 2012 the Gyne at the Wasser Clinic finally agreed to do the surgery. I was told she would remove my left ovary and both tubes. Since I was no longer looking to have children, if things went wrong she would open me up and remove it all. I was OK with that. I signed off on that.

When I woke up I wasn’t in a lot of pain like my last surgery and I got very little details from my attendee. I had to wait six weeks to see my surgeon and to get my results. I was told there was Endo in the cul-de sac, adhesions on my right side on the bowels causing a partial bowel obstruction and my right ovary was embedded in the pelvic wall and she left it there. On the other side the ovary was attached to the uterus by adhesions and the uterus stuck to the sigmoid colon by adhesions. Nothing was removed like I was told, so I was extremely confused.

At my six week appointment she said she ran into difficulties with the density of the adhesions covering the ureter and ovary that was embedded into the pelvic wall and said it was too dangerous to remove unless she opened me up…Umm did I not agree to that before I went in? rrrrr. She said my uterus was nicked with a tool and I was bleeding out but they managed to stop the bleed.

Later, after not being happy with what she told me, I took to Facebook and asked Dr. Redwine some things about my results. He mentioned that the giant cell found on my bladder flap that was biopsied was carbon residue from the laser used in 2007. He said it acts as a splinter so that might explain the painful peeing and all the other issues I had with my bladder.

Right now, after undergoing two endometriosis surgeries, I feel the major battle moving forward will always be the adhesions that seem to grow like wildfire in me. A hysterectomy would not stop the adhesions, so it is something that I still have in the back of my mind but don’t think I will pursue unless 100% necessary.

There are many therapies for adhesions, infertility and endometriosis. One of them is Clear Passage Therapy, however, I don’t live in the US and I can’t afford the treatments but I understand that they have very high success rates.

My only other option right now is Yamuna body rolling. You roll on the ball slowly to break up adhesions. I know many women who have had surgeries and swear by this technique. This is why I have considered it. I am a work in progress and I don’t know what is next. It’s a watch and wait game for now.

Hormones Matter

Where health, hormones, and a whole bunch of other stuff, make sense.

endometriosis - Page 11

Angela’s Lupron Story

Post Surgery Lupron

Lupron Again and Again

What I Learned

Participate in Research

Endometriosis After Hysterectomy

Participate in Research

Recurrent Miscarriage

The Road to Baby: Fertility and Endometriosis Treatment

Waning Fertility

Endometriosis and Fertility

Trying to Conceive: The Complications

Excision Surgery

Road to Baby – Back on Track

The Sisterhood

Adhesions – the Pain, Suffering and Frustration

176 Million Reasons

Endometriosis and Adhesions

endometriosis - Page 11

Post Surgery Lupron

Lupron Again and Again

What I Learned

Participate in Research

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Waning Fertility

Endometriosis and Fertility

Trying to Conceive: The Complications

Excision Surgery

Road to Baby – Back on Track

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