Pain-Free and Well After 12 Years-Please Read My Story

I just wanted to provide this forum with some valuable information. I have done tremendous research and traveled the country in search of the best resources to cope with endometriosis. I recently underwent surgery with Dr. John Rock, former president of the World Endometriosis Society. He is a leading expert and innovator in the research and treatment of endometriosis. He performed a laparotomy on me in October 2002 and the results have already been remarkable.

I am finally pain-free.

I am 23 years old

and I have been suffering from endometriosis since my first menstrual period at age 11. My younger sister was diagnosed with endometriosis at age 13. She and I have been treated by the most prestigious medical facilities and doctors in this country. I have visited the Mayo Clinic in Rochester, Minnesota, the University of Michigan Hospital in Ann Arbor, Michigan, Dr. Marc Laufer at Boston Children’s Hospital in Boston, Massachusetts and with doctors such as Dr. Rock at Emory University in Atlanta, Georgia. I have also consulted with Dr. David Redwine in Bend, Oregon and gynecological specialists at the University of Miami Medical Center as well. I have done tremendous research in medical journals and consulted with numerous other physicians nationwide.

It saddens me to hear of the countless surgeries that you all have undergone and the fact that doctors do not know how to properly treat endometriosis. I have been in your shoes.

But now with the expertise of Dr. John Rock and his team of gynecological specialists at Emory University, I am well now and I am off all hormones and prescription drugs for the first time in 12 years.

Since I was 11, I have been plagued with cramps, lower back pain, cystic ovaries, gastrointestinal and urological symptoms due to the endometriosis. There is no cure for endometriosis.

But there is help out there.

Dr. Rock has taught me that often times, as with my case, laparoscopic surgery is not thorough enough in exploring and treating endometriosis. Often times, the endometriosis is deep within the pelvic cavity, it is in the retro-peritoneum and deep in the utero-sacral ligaments. The laparoscope is often unable to see all of this deep endometriosis. That is why a laparotomy is often necessary.

I was first diagnosed and treated laparoscopically in 1999 but my symptoms did not improve, even with continuous birth control usage to suppress my periods. I have learned that there is a type of endometriosis that one is born with, like myself and my sister. The pain is present before one’s first menstruation or at the onset of menstruation. This type of endometriosi is congenital-one is born with the disease. This is the deep disease that needs to be removed by laparotomy.

I have also learned that hormones do not always suppress the growth of endometriosis. Often times, hormones are only implemented to suppress the symptoms, not the growth. In addition to excising, not lasering or burning the endometriosis, Dr. Rock and his colleagues at Emory also perform a procedure called a presacral neurectomy to combat the neurological pathways that transmit pelvic pain.

It is important that young girls and women, like yourselves, realize that painful, debilitating periods are not normal. It is very important that you find the right specialists. There are too many myths and misconceptions out there regrading endometriosis. You owe it to yourselves to find the best healthcare providers. I consulted with very reputable specialists in my hometown of Miami, Florida but I was misdiagnosed for nine years and not treated comprehensively enough with laparoscopic surgery.

I urge those of you out there, both young and old, to find the best doctors. Your pain is real. Wonderful endometriosis specialists are out there. They are just often difficult to find.

Endometriosis can only be diagnosed through exploratory surgery such as laparoscopy and laparotomy. It is not necessary to have multiple surgeries and radical surgery such as hysterectomy. My reproductive organs have been spared because I found the best resources and the best doctors. I have tried everything from hormones to acupuncture. These treatments only mask the pain-they do not rid you of the disease.

If you have any questions, please contact me via e-mail at risajb@aol.com and I will help get you in touch with the best endometriosis specialists. I want to help spare you some of the pain my sister and I have endured. It is important that you take an active role in your health-your quality of life and your fertility are at stake.

Help wanted Contributed by Christy

My name is Christy and I have had endo for 12 years. I am now 25 and I just got married and we are now trying to have a baby. I have been on birth control pills since I was 13 to help with the pain and this is the first time that I have been off of them. I am sceard that the pain is going to be too much for me but I really want to have a baby. I am looking for someone to talk to about this. Someone that has been on the pill for a long time and has had endo for a long time but still was able to have a baby. If you are a person that I can just talk to about some of this please e mail me at
cmcconaughy@jetproducts.com

Thank you
Christy

Arianna and Michael (Arianna) – #3 January 9th, 2002

Okay I feel like I’m dying or something. Last Wednesday I started getting the cramps and I had such horrible back pain. Then on the weekend the insomnia hit and the headache.
Yesterday the period hit full force as did the cramps, the headache, the nausea. Now I just need the hot flashes to make it all complete. I just want to curl up in bed and not move. I wish my doctor would attempt to help me ease the pain with my period, but I think that’s asking for a miracle.

Mandi’s Story – Surviving Endometriosis and Infertility

My name is Mandi Hood. As I sit and write this I am recovering from a hysterectomy on October 2, 2002. I am 32 and was diagnosed with Endometriosis at 21. I have had 12 surgeries in the last 11 years. I almost feel like an expert now. I had Endometriosis, polycystic ovaries, and fibrocystic tumors. I so wanted a child so when the doctors told me to have a hysterectomy at 21 I told them no that my God was bigger than them and they were not removing any of my body parts… thus begins my long journey.

After many fertility treatments, Lupron treatments, and many other treatments, I did eventually lose my left ovary and fallopian tube in January 2000 because of a cyst the size of an orange. Every surgery brought more bad news of scar tissue and Endometriosis. My uterus was always stuck to my endometrial wall as well as my ovaries. I also had Endometriosis on my colon and no doctor dared to touch that. Pain has been my constant companion for all of these years. I was diagnosed with fibromyalgia in August 1999. I had no idea the two were related until now.
In August 2000, after giving up hope I found out I was pregnant. My husband, Edward and I now have a beautiful 18 month old baby girl. She is my miracle. Last month I started my period and it was awful. I was bleeding so heavy and passing large clots(4inches in diameter). I had to wear adult diapers. After two weeks of bleeding like this we did another surgery. By the time I got to the hospital my blood count was down to 9. When they got inside they found horrendous scar tissue. My uterus and colon were completely fused together and once again I had fibroids in my uterus. I started bleeding and lost 900cc more blood. I had to have a transfusion. The first few days after surgery I was in so much pain that I swore that if I died and went to hell that Satan would used a hysterectomy as my eternal punishment. Now 9 days later I look at my little girl and thank God for her and for my life. I needed to share my story to let other with this condition know there is hope.
Copyright © 2002. Mandi Hood. All Rights Reserved.

FDA Discusses Accidental Overdoses

This story, from Sept 19, 2002, can be found on HealthWorld Online. It is written by LAURAN NEERGAARD, AP Medical Writer.
“SILVER SPRING, Md. (AP) – Thousands of Americans may unwittingly take toxic doses of acetaminophen, putting themselves at risk for serious liver damage, say federal scientists who are debating whether consumers need stiffer warnings about how to safely take the popular over-the-counter painkiller.”

Sciatic and Thoracic Endometriosis

Uncommon Manifestations: Sciatic and Thoracic Endometriosis

As we enter a turning point in healthcare, more physicians are beginning to recognize Endometriosis for the significant issue that it is. Better still, more teens and women with the disease are beginning to advocate for themselves – armed with education and knowledge about Endometriosis, they are becoming partners in their own healthcare and taking an active role in their disease management.
But we still have a long way to go. There are many who still maintain that Endometriosis “can be cured by pregnancy or hysterectomy,” and who believe that the disease only occurs in and on the reproductive organs. Though referred to as “uncommon,” two specific manifestations of the disease are becoming more prevelant. This recognition may be due in part to the practitioner’s increased understanding and awareness of the disease, and/or to the patient’s active role in her own care; speaking up and making herself heard about new or
different symptoms she may be experiencing.

SCIATIC ENDOMETRIOSIS

Pelvic Endometriosis is a common gynecological problem. The most common sites are the ovaries, cul-de-sac, uterine tubes, the pelvic peritoneum, the recto-vaginal septum, the cervix and the bowel. Sciatic nerve Endometriosis is less common, but should be included in the diagnosis of pain in the sciatic nerve

distribution.

The first case of sciatic Endometriosis was described by Denton and Sherill in 1955. Symptoms that may lead to the suspicion of Sciatic Endometriosis include: pain which begins just before menstruation and lasts several days after the end of the flow, motor defecit, low back discomfort radiating to the left leg, left foot drop and weakness, cramping in the left leg when walking for long distances, and tenderness of the sciatic notch. There is generally a previous history of pelvic Endometriosis. If left untreated, the symptoms can lose their cyclical nature with time, due to scarring; resulting in a progressively shorter pain-free interval until constant pain prevails.[1] Early recognition is necessary to prevent permanent damage to the sciatic nerve.[2] The disease may be seen on diagnostic imaging tests in select cases; other cases require visual diagnosis.

Sciatic Endometriosis is generally treated the same way as pelvic disease; surgical eradication and/or a course of medical therapy.

Extensive empirical data discussing this condition exists in peer-reviewed literature. In a 1999 Review of Neurology case report[3] authors Calzada-Sierra, Fermin-Hernandez, Vasallo-Prieto, Gomez-Fernandez and Santana de la Fe discussed a patient with cyclical sciatica due to implantation of endometrial tissue in the sciatic nerve in the region of the sciatic notch. Authors noted, “if it is not treated, a sensomotor mononeuropathy of the sciatic nerve develops.” Their patient had complained of right-sided sciatic pain from the age of 36 years, and over the years a motor deficit had slowly and progressively appeared causing foot drop. The painful crises were related to her menstrual periods. At the age of 44 years, a pyramidal muscle syndrome was diagnosed and treated surgically. This was followed by increase in the crises of sciatic pain. A year later, she
started to have sciatic pain on the left side, which was similar to that of the right side. At the time of publication, the patient was still being treated with depot medroxyprogesterone (Depo Provera), and her pain has disappeared. Authors concluded that “cyclical sciatica due to endometriosis is little known and may lead to permanent disability. Computerized axial tomography of the pelvis using contrast material is very useful for diagnosis. The use of depot medroxyprogesterone seems to be a satisfactory treatment in some patients.”

In a 1999 Fertility & Sterility article[4], authors Fedele, Bianchi, Raffaelli, Zanconato and Zanette published a study in which they attempted to assess the efficacy and diagnostic value of GnRH agonist (GnRH-a) therapy in cases of hidden sciatic nerve endometriosis. In this case report, authors reviewed the treatment of three patients with cyclic, catamenial (“upon menstruation”) sciatica associated with pelvic endometriosis, who had electromyographic evidence of sciatic nerve damage but negative computed tomography (CT Scan) and
magnetic resonance imaging (MRI) findings. Their patients were given a monthly administration of Lupron plus 25 mcg. of addback. As a result, all three patients had clear decreases in pain and partial amelioration of claudication. Authors concluded that “Endometriosis of the sciatic nerve may be hard to diagnose with the use of current imaging techniques, but may be proved by clinical response to GnRH analogue treatment and may be more frequent than previously thought.”

Another report in a 1996 edition of the journal Spine presented by authors Dhote, Tudoret, Bachmeyer, Legmann and Christoforov outlined a review of a case of cyclic sciatica secondary to ovarian cyst endometriosis[5]. Authors noted that “Endometriosis of the sciatic nerve is rare, but must be included in the differential diagnosis of sciatic mononeuropathies.” The authors reported a case of a patient whose cyclic sciatica was caused by an ovarian cystic endometriosis lesion. Magnetic resonance imaging permitted a specific diagnosis of this unusual cause of sciatica by showing a hemorrhagic mass in the region of the sciatic
nerve. Authors further concluded that “early recognition is necessary to prevent permanent damage to the sciatic nerve.”

In “Endometriosis of the Sciatic Nerve: Case Report Demonstrating the Value of MR Imaging,” authors Descamps et al. stated that “Endometriosis…should be considered in menstruating women in view of the diagnostic strategy and ensuing therapeutic implications.” Authors related a case of sciatic nerve involvement with Endometriosis in contact with the nerve in the left sciatic notch which was discovered by MRI. Authors concluded that “MRI was invaluable for the diagnosis, revealing a signal on the stem of the nerve suggestive of a lesion with haemorrhagic content.”[6]

Hysterectomies may also be indicated as treatment for patients who have completed their families. One such case where a hysterectomy was effective treatment for the patient is presented in “Adenomyosis–an Unusual Cause of Sciatic Pain” by al-Khodairy AT; Gerber BE and Praz G.[7] Authors report the case of “a female patient who presented with a 5-month history of sciatic pain who had been referred for investigation and surgical treatment of a suspected herniated lumbar intervertebral disc. Because of an ill-defined clinical picture at admission, she was treated conservatively. After 2 weeks without any improvement, imaging of the spine by MR (magnetic resonance) was performed. No signs of a herniated disc or intraspinal, space-occupying lesion were apparent, but a right paramedian pelvic mass was seen. Ultrasonography confirmed an enlarged, irregular uterus. Hysterectomy abolished the symptoms.”

An excellent review by Mazin Ellias, M.D., F.R.C.A., Director, Associate Professor, Pain Management Program, Medical College of Wisconsin, entitled “Endometriosis of the Sciatic Nerve”[8] outlines the importance of early diagnosis and detection to prevent permanent sciatic nerve damage. Dr. Ellias states that “physical examination findings may reveal various neurological deficits involving the sciatic nerve rootlets. There may be localized tenderness over the sciatic notch, but this is not classical finding. Pelvic examination may be normal. Hormonal suppression of the endometrial tissue may also cause pain relief and aids in proper diagnosis. CT and MRI findings of endometriosis can be variable as they can appear as solid or complex cystic lesions, and involvement of the sciatic nerve at the sciatic notch has been a constant feature.” Dr. Ellias further
states that “electromyography has been useful in diagnosis as well as differentiating between peripheral and root nerve involvement. However, normal findings on electromyography have been reported. An unequivocal diagnosis can be made by direct visualization during operative surgery/laparoscopy and confirmed by histopathology. The ‘pocket sign’ visualization under laparoscopy or surgery of a peritoneal evagination containing ectopic endometrial tissue has been described by Head et al. In patients with cyclic sciatic pain, this finding may be the only clue to the presence of endometriosis, however this sign may be overlooked by the surgeon.”

THORACIC ENDOMETRIOSIS

Extensive literature exists on findings of thoracic (lung) Endometriosis in patients worldwide, the first of which date back as far as 1912. According to Dr. Andrew Cook[8], thoracic Endometriosis is divided into two parts: pleural, which is the lining of the lung, and parenchymal, which is the lung itself. The majority of cases occur in the pleura, rather than the lung itself.

Symptoms include:

Difficulty breathing
Deep chest pain
Pneumothorax (collapsed lung)
Pleural effusion (“water on the lung”)
Bloody sputum occuring with menses

In a recent report, “Catamenial Pneumothorax with Diaphragmatic Endometriosis,” authors Yoshida, Izumi, Hasegawa and Kubota[9] noted the experiences of a 30 year-old patient who had twice presented with pneumothorax that was related to the onset of menstruation. Upon thoracoscopy, the presence of blueberry spots and pinholes in the lateral part of the central tendon in the diaphragm were seen. Histological findings showed Endometriosis of the diaphragm. She was followed without hormonal therapy, but recurrent right
pneumothorax occurred. She was then placed on Lupron for 5 months and remained asymptomatic 7 months after surgery.

In “Catamenial Pneumothorax–Endometriosis as a Multidisciplinary Challenge” by S. Leodolter and W. Marhold[10], authors noted, “…since the condition is poorly understood, patients with ‘catamenial pneumothorax’ tend to be subjected to often quite stressful surgical procedures. These do not provide a permanent cure, as shown by the presented case. Traditional hormonal regimens are also associated with high relapse rates. Consequently, abdominal hysterectomy with bilateral removal of the adnexa has been the treatment of choice if fertility was no longer desired. The battery of conservative treatment modalities has, however, recently been expanded by the use of GnRH analogues and antigestagens. As embryogenesis and the factors underlying the development of endometriosis are better understood and as the complex symptoms of the condition as well as the state-of-the-art therapeutic approaches are more widely appreciated, women
afflicted with the condition should be able to benefit from a more rational and possibly even causal treatment concept.”

In his 1991 book, “Endometriosis: Contemporary Concepts in Clinical Management,” Dr. Bob Schenkin wrote that “Endometriosis of the lung accounted for all reported cases of Endometriosis which occured outside of the
abdomen. Approximately 100 confirmed cases, and many more suspected cases, have been reported over the years.”[11]

As with Endometriosis in general, it is not definitively known why or how this manifestation of the disease occurs. It is thought, however, that circulating peritoneal fluid encourages endometriotic tissue to implant on the diaphragm. This in turn causes structural damage, such as minute holes, which then allow passage of the tissue into the lining of the lung.

Most patients with thoracic Endometriosis also have pelvic Endometriosis. Thoracic Endometriosis may be suspected based on diagnostic testing and patient symptoms, but surgery is still the gold standard for confirmation of diagnosis. Treatments include medical therapy and surgery.

Footnotes:
[1] “Endometriosis of the Sciatic Nerve” by Mazin Ellias, M.D., F.R.C.A., Director, Associate Professor, Pain Management Program, Medical College of
Wisconsin. Froedtert Memorial Lutheran Hospital/Grand Rounds April/June, 1999: Volume 6, Number 2
[2] & [5] “Cyclic sciatica. A manifestation of compression of the sciatic nerve by endometriosis: a case report;” Spine 1996 Oct 1;21(19):2277-9 (ISSN:
0362-2436). Dhote R; Tudoret L; Bachmeyer C; Legmann P; Christoforov B; Service de Medecine Interne, Hopital Cochin, Paris, France.
[3] “Bilateral Cyclic Sciatica Caused by Endometriosis,” Rev Neuro (Jul 1-15;29(1):34-6, ISSN: 0210-0010), Calzada-Sierra DJ; Fermin-Hernandez E;
Vasallo-Prieto R; Gomez-Fernandez L and Santana de la Fe from the Centro Internacional de Restauracion Neurologica, Ciren, La Habana, Cuba
[4] “Phantom Endometriosis of the Sciatic Nerve,” Fertil Sterol 1999 Oct;72(4):727-9 (ISSN: 0015-0282) by Feudal L; Blanch S; Raffaelli R;
Zanconato G; Zanette G; Department of Obstetrics and Gynecology, University of Verona, Italy
[6] “Endometriosis of the Sciatic Nerve: Case Report Demonstrating the Value of MR Imaging,” Eur J Obstet Gynecol Reprod Biol 1995 Feb;58(2):199-202 (ISSN:
0301-2115). Descamps P; Cottier JP; Barre I; Rosset P; Laffont J; Lansac J; Body G, Department of Obstetrics and Gynecology, University Hospital, Tours,
France
[7] “Adenomyosis-an Unusual Cause of Sciatic Pain” Eur Spine J 1995;4(5):317-9 (ISSN: 0940-6719). al-Khodairy AT; Gerber BE; Praz G,
Department of Orthopaedic Surgery, Hopital de Pourtales, Neuchatel, Switzerland
[8] “Ask Dr. Cook,” www.drcook.com [9] Kyobu Geka 1999 Nov;52(12):1040-2
[10] Gynakologisch-geburtshilfliche Abetilung, Krankenhaus Lainz, Wien
[11] “Endometriosis: Contemporary Concepts in Clinical Management,” Robert Schenkin, MD

Copyright © 1999 by Heather C. Guidone. All rights reserved. Do not reproduce without express permission

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