Lupron for endometriosis

From Lupron to Fibromyalgia, Hashimoto’s, Pericardial Effusion and More

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My name is Kerri. I was diagnosed with Stage IV Endometriosis when I was 27 years old. I am here to share my story about Lupron so that hopefully someone else does not have to go through what I have gone through and what I am still going through.

I suffered through years of horrifically painful periods when I was in high school. My cramps were often so bad that I would be crawling around on the floor every month.  I would develop fevers from the inflammation and the pain. I started getting sick a lot.  I was dismissed by almost every doctor I went to. I just consistently heard, “You are young, don’t worry about it, “or “You are just stressed out.” But I know my body and I knew something was wrong. My hormonal fluctuations were also a nightmare. I suffered waves of depression and extreme irritability. It was not until I was rushed to the hospital for pancreatitis that my doctor noticed a deformity in my uterus through a CAT Scan. I decided to see a new gynecologist and he immediately sent me for a pelvic ultrasound. I had cysts everywhere. After my first laparoscopy, I was diagnosed with Stage IV Bilateral Endometriosis. All the visible endometriosis was removed along with the cysts.

I continued to be proactive and go for regular pelvic ultrasounds. Unfortunately, the cysts and endometriosis progressed rapidly. My doctor said I was the most progressive case he had ever seen. I then went on to see a Reproductive Endocrinologist. He did an in-office ultrasound on one of my visits and told me I needed immediate surgery. After surgery, I was told that the endometriosis had spread rapidly to my entire pelvic region as well as my kidney, my liver, my bladder, and my intestines. He said to me, “We are going to start you on Lupron. Your case is too progressive. This is your only hope.”  I was also told I would never be able to have a child of my own.

I went home and researched Lupron myself. There was nothing, but horror stories about it online. I was especially concerned with the alarming amount of fibromyalgia diagnoses’ after use of Lupron. I addressed my concerns to my doctor. He reassured me by saying, “You can’t believe everything you read on the Internet. This is a good drug.”  I decided to trust in my doctor, even though my gut instinct was telling me not to take this drug. However, I was living a life of pain and wanted desperately to get my life back.

I received my first dose of Lupron through injection August of 2007. I was told that my only side effect would be hot flashes.  I never got a hot flash from Lupron. Instead, I experienced crippling fatigue and involuntary muscle twitches and facial tics.  At the end of the month I still got my period. Lupron is supposed to suppress your period. I called my doctor and told him. He did not seem concerned. Therefore, in September I received my second Lupron injection. My fatigue and muscle twitches increased and I, again, got my period at the end of the month. My third and final shot of Lupron was administered in October. I remember being at work and saying to my co-workers, “I don’t feel right. Something is not right.” Every muscle in my body ached and my joints were hurting.  I could not bend my fingers. I put a call into my doctor.  I was not able to reach him, but spoke with the Nurse Practitioner. I told her what my symptoms were and she just told me, “That is not from Lupron.” She seemed annoyed that I kept asking questions. I had to call out sick to work the next day because my entire body hurt. It took me a week of calling everyday to even get the doctor on the phone and the only answer I did get from him was, “You must have a virus. Go see your regular doctor.”

I went to see my regular doctor. I told him my situation. He went home and researched Lupron on a website that he used for his own practice. He called me personally and said, “I don’t know why your doctor told you that this drug doesn’t cause fibromyalgia because it does.”  I will forever regret deleting that voicemail message by accident. Needless to say, my reproductive endocrinologist never saw me again. I, also, have not been able to work full time since October of 2007. My life was forever changed.

I was sent to a rheumatologist and was diagnosed with fibromyalgia. I was bed ridden for six months. I went from walking 2 miles a day to not being able to go up and down the stairs without pain.  All of my muscles felt like I had spent the day lifting weights when I had actually been in bed all day. I ached from my head to my toes. I had to resign from my job teaching children with Autism. It was too physical and I could no longer handle it. My entire world had been turned upside down. I was offered Lyrica for my fibromyalgia, but after my experience with Lupron I was terrified to try it. My immune system crashed and in the following months I was diagnosed with thyroid disease, fluid around my heart, Epstein Barr virus, vitamin deficiencies, and food allergies. In addition, the Lupron did nothing for my endometriosis. It was still growing and spreading.

In February 2013 my bladder shut down and I was completely catheterized. The belief was that the adhesions, scar tissue and cysts were causing the bladder problems. Therefore, in April of 2103, I underwent a full hysterectomy. My bladder, unfortunately, is still not operating on its own and I have also been diagnosed with a neurogenic bladder. This is concerning because I was born with only one kidney and a neurogenic bladder is one of the main causes of kidney failure. My urologist believes I may be a candidate for a bladder pacemaker which may or may not even work.

It has now been six years since I took Lupron and I still experience all the side effects from it. It is my opinion that this drug shut my immune system down and led to all of my other health problems. I have done so much research and numerous women are experiencing the same side effect. This NEEDS to stop!  I struggle everyday with the memory of the life I used to lead. It is a sad realization when your life stops, but the rest of the world keeps living. It sounds silly, but I would love to go back to the days where endometriosis was my only health concern. I have tried my best to become my own health advocate and it pains me to say that I have lost faith in those doctors who treat on a universal level, rather than a case by case basis. It is my hope that my story can help spread awareness and maybe help someone else out in the end.

There is not a day that goes my where I wish that I didn’t listen to my gut instinct that day.  I have lost my career, my health, my finances, and most of my friends in the process. I have been humbled by this and never take good moments for granted. I would love a day of no pain. I have to believe that if I keep fighting, there will be some light at the end of this very long, grueling journey. I hope the universe will allow me the opportunity to pay it forward.

To learn more about Kerri’s health struggles, click here.

Participate in Research

Hormones MatterTM 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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I’m a Lupron Teen

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My name is Sydney and I am 18 years old. I was diagnosed with Endometriosis in 2011 at the age of 16. After much trial and error with medications to treat my Endo I turned to the Lupron shot with Add-back therapy, which means every three months I go and get a shot into my back side and everyday I take a pill called Norethindrone.

My first Lupron shot was nerve racking. I left the hospital in a wheelchair because I was feeling faint after the huge needle was placed in my butt. I started feeling weird side effects, like hot flashes, dryness, night sweats; you know, normal things all teenage girls go through during menopause. The only woman I knew who had ever gone through menopause was my grandma, so I talked to her.  I bought an organic hot flash spray, and I opened the window at night.

I was really upset and depressed when all this was happening, but I was open about it. I talked about it with everyone; my mom, boyfriend, even my dad. I explained to everyone that I needed support and kindness during this time. I asked them to be patient with me as this was difficult for me to handle. They were so good about it, the most supportive they have ever been. Soon my side-effects subsided and it was time for my next shot, which went much smoother.  No wheelchair and fewer side-effects and still lots of support !

After my third shot I was given a bone density test to make sure I could still get the shot without it effecting my bones (another side effect) and I passed ! I have now been on the shot for over a year and I am so satisfied. My pain is so well controlled and I experience minimal side effects. Lupron is hard at first. It takes time for your body to adjust. It’s not right for everyone but it seems to be working for me.

Participate in Research

Hormones MatterTM 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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Angela’s Lupron Story

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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 MatterTM 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.

Lupron or Laparoscopy to Diagnose Endometriosis?

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I recently had my first pre-operative appointment for the diagnostic laparoscopy I’m having soon. I was nervous, and had a list of questions for my doctor. This was the second gynecologist I’d seen to discuss diagnosing endometriosis; my other doctor is too elderly to operate. She was frank and very straightforward.

 

“There are two options for diagnosis: a laparoscopy and chemically-induced menopause with Lupron. If we do a laparoscopy and find nothing, we still have other diagnostic options. It’s a good sign that you’re doing better after a brief time on hormone-replacement therapy and then extended-course birth control. If we do find nothing, we’ll try Lupron, which will chemically induce menopause. If Lupron doesn’t work, you don’t have endometriosis, and you’ll be looking at other tests. 

We’ll schedule you for one more pre-operative appointment where you can ask all the questions you have and you’ll register with the hospital where the surgery will be performed. You’ll go home the same day, and you should take it easy for three days. In two weeks, you’ll have a follow-up appointment where we’ll go over what we found inside your pelvis and check your surgery sites for infection. 

Then, assuming you do have endometriosis, we’re going to evaluate you every six months to a year. You’re going to tell me how much this disease is affecting your quality of life. If the pain and immobility returns within a year and your current treatment options stop working, we’ll try inducing menopause. 

Lupron has its risks, but it allows us to achieve valuable steps both in terms of symptoms and diagnosis. You’ll get an injection every three months. When you decide you want to try pregnancy or want to stop the course of treatment, you’ll stop the shots and return to your natural hormone cycle. The effects of this shot are reversible. If you do have endometriosis, Lupron will relieve all your symptoms. We’ll also know for certain that this is endometriosis. If you still experience pelvic pain and cramping while using Lupron, you don’t have endometriosis. The side effects may be intense, but it’s something to consider if you get worse over the next few decades.”

I told her I was worried about the surgery itself. It’s a very common diagnostic procedure; it’s minor surgery and thousands of women undergo it every year. However, a close relative of mine underwent a diagnostic laparoscopy in her early twenties for endometriosis and her doctors decided to give her a hysterectomy. Obviously, her health history was somewhat different and it was medically necessary. Still, it’s hard to sign up for a small procedure if you could wake up without one or both ovaries or all your reproductive organs.

She asked me when this happened. It was the 1970s. She leaned forward and said, “That was a very long time ago, and medicine has come a long way since then. The biggest difference is that there were no female surgeons and very little research on the risks of hysterectomies on very young women. We’re not going to remove any of your organs, no matter how bad the extent of your endometrial implants. You’re much too young, and your imaging shows no tumors or large cysts. There’s no reason to put you through that. You may decide you want to have children later in life, but that’s not the main motivation for keeping your organs. Where do your hormones come from?”

“My ovaries.”

“Yes, and they’re very important to your overall health. You need to keep them. If you were 50 and approaching menopause, we’d be having a different conversation. I want you to write down any questions you may have, but I don’t want you to be concerned with keeping your organs.”

We then went over what a laparoscopy is. I’ll be put under anesthesia and my abdomen will be inflated through my navel. The surgeon will insert an instrument to manipulate my uterus. She will then insert a very small camera through my navel and a cauterizing tool. If she finds evidence of endometriosis, she will use the cauterizing tool to ablate, or burn away, the endometrial tissue. I thought this would take hours. She said it should only take a very short time; the large time frame for the surgery is to regulate my sedation and anesthesia. After the ablation, my abdomen will be deflated and they will move me to recover from the anesthesia. I’ll go home the same day.

In another week, I’ll have one more pre-operative appointment where I can discuss some of the questions raised from responses on this site and register with the hospital where the surgery will be performed. I’m anxious, but I’ve done some research and feel comfortable with my choice of surgeon. With any luck, I’ll have a diagnosis and a treatment plan within another month.

Please note, Lupron can neither diagnose nor confirm endometriosis. Lupron was never approved for such uses. For more information, please click here: Lupron.

Participate in Lupron Research

Hormones MatterTM 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.

Endometriosis in Teenagers

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The endometriosis patient who elicits from me the greatest form of empathy and compassion is the patient whose pain begins in her teenaged years or even earlier. This young woman has doubts and fears when she thinks her incapacitating symptoms are the norm. She believes that everyone feels as bad as she does during her period (or apart from menses, if her symptoms are not confined to her periods), and so she concludes that other girls handle things better.

She starts to wonder, “Am I a wimp? Do I have to live like this for the rest of my life?”

These feelings of inadequacy are deepened by often well-meaning but uninformed people including coaches (“Working out will make your cramps better”), parents (“Your sisters never complained like you do about this”), and girlfriends (“Don’t be such a baby! It’s just your period!”). Many times the afflicted teenager grits her teeth and tries to tough it out.

When her symptoms do not improve, or when they worsen, the teenager may finally be taken to a doctor, where she may experience her very first pelvic exam. If this examination is not very carefully performed, the experience can be both humiliating and painful. After the exam, the patient may be told, “Everything appears normal.” The message is, “There’s nothing wrong with you. Why do you complain so much?”

If her symptoms are felt to be severe enough, the teenager may be initiated into the world of analgesics (pain medications). Repeated visits to the physician may result in numerous different analgesics.

If symptoms persist, the patient is given ovarian suppressants in the form of birth control pills. The result is that an otherwise healthy and normal young woman is now functioning only with the help of her drugs.

Our society in general frowns on drugs, and teenagers today have especially been inundated with the message, “Just Say No!” This concept contrasts with the young woman’s drug dependency (not drug addiction) and can contribute to a gradual loss of self esteem.

She may think, “I shouldn’t take drugs, but I can’t function without them, therefore I am weak or helpless or worthless or bad.”

As endometriosis progresses in these young women, most eventually end up on the operating table for diagnostic procedures. The endometriosis is diagnosed (sometimes) and staged (sometimes). If the physician believes that there is no cure for this devastating disease, he or she may offer only analgesics or medical forms of therapy (Danocrine, Lupron, Synarel or Zoladex) which stabilize the process at great monetary expense and side effects that can be as bad as the disease itself.

The ultimate result here is that, in addition to all the other physical and psychological impacts of this type of treatment, it takes away the teenager’s hope that she will ever be pain-free to live a normal life. There is nothing I know that has a greater impact on our lives than the loss of hope. It is a primary form of torture used on prisoners of war. Is it any wonder that we find many of these young women have become angry, depressed, and totally confused?

What Can Be Done?

Thankfully, we have much to offer a young woman with endometriosis.

Make the Diagnosis Early

Young women who do not respond to simple mild analgesics and who have any suggestive findings on physical examination should be laparoscoped. Endometriosis should be considered as a possible diagnosis at any point after a girl has her first period (menarche).

Don’t be Drug-happy

If she has symptoms consistent with a diagnosis of endometriosis, it is crucial that the diagnosis be proved before subjecting a young woman to prolonged bouts of powerful drugs. Sometimes physical abnormalities can cause painful symptoms. Such abnormalities can be corrected surgically and are not helped at all by medications.

Believe the Patient

A young woman’s support group (parents, siblings, schoolmates, teachers, partners, boyfriends and girlfriends, etc.) should believe her when she reports pain and other symptoms. It is really very unusual for a well adjusted child to suddenly begin using complaints of pain to get attention.

Enlist an Expert

Facing a first pelvic examination is a little intimidating for even the most relaxed woman. Imagine, then, how frightening it can be for a young woman, in pain and worried. Find a physician who is interested in treating the entire person: not just a collection of pelvic organs.

Know These Facts!

We are now finding that well-trained surgeons skilled in recognizing all visual manifestations of endometriosis can keep recurrence rates under 20% by completely excising all disease. In the overwhelming majority of cases, surgeons knowledgeable in advanced laparoscopic techniques do not need to make large incisions during surgery. Most patients go home the same day they have surgery.

Certainly, menstrual cramps may persist, and some women will have pain around ovulation. Overall, though, I have found the ability to relieve the pain of endometriosis sufferers is one of the most gratifying things I have ever done.

When chronic pain is relieved, you will see the return of a healthy state of mind. These young women can resume their lives as they ought to be. One young woman’s parents wrote, “Thanks for giving us our daughter back.”

We think the teen-aged years are hard enough without endometriosis making them worse, and are pleased to be able to offer the opportunity for significant and long-lasting pain relief.

About the author: Robert B. Albee, MD, FACOG, ACGE is the Founder of the Center for Endometriosis Care, a COEMIG-designated center of excellence in the treatment of the disease.

Lucine Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

My Battle with Endometriosis and Migraines

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Twenty-Five Years for the Correct Diagnosis: Endometriosis

My name is Angela Wice and I am 35 years old. I had one child with natural birth in 2003 and was diagnosed with Stage IV endometriosis June 2006. My Journey has been long, depressing and still not over 25 years later. Here is my story.

 

Early Childhood and Early Troubles

I was a very busy active, athletic, child growing up.  I would say besides being born with jaundice, I was healthy until I turned 7 years old. I was rushed to the hospital because I started bleeding rectally. I was operated on within hours of being at the hospital for intestinal volvulus and appendectomy. They sewed my bowel to the pelvic wall so it wouldn’t happen again.

By the age of 10, I started to get chronic headaches and was told to stay away from chocolate, peanuts and cheese.

The Pain of Endometriosis

I got my first period when I was 13. The second time I got my period is when the pain started. I had the worst cramps ever, my legs would go numb, I was nauseated, I was bloated, and I was in so much pain I would vomit. I remember them saying that you should only bleed 1 TBSP a period and I was like “Are you kidding me, I do that in an hour!!”

My mother took me to the doctor the same year. The doctor did an ultrasound and a transvaginal one as well. The pain was so bad on the left side when she inserted it inside me but other than that nothing showed up but she did say that I possibly had endometriosis. That was at 14 years old, nothing was done about it. I was given Naproxen and that was that.

Endometriosis and Migraines

My first migraine happened when I was working at around 16 years old. My whole right side went numb including my tongue. I went to the hospital and they said it was an Aura Migraine.

By 17, I was far beyond constipated and the rectal pain I had was so severe and sporadic. To be honest, I never really put two and two together because I could just be driving and all of the sudden it felt like was being stabbed with a knife in my rectum. That never went away. It was constant.

I knew I was getting my period because I would, all of the sudden, not have constipation and I mean literally evacuate all my bowels at one time. That was my sign to start taking the Advil, and by the next morning or the middle of the night there it was. Sometimes if I didn’t take the Advil in time it was too late, nothing would work. I would pump my system with so much of it until my period was over. During my period I could not have a BM at all until my period ended. It was excruciating. I got fed up went to see a gastrologist. I had a colonoscopy and was told it was IBS, which I did not believe. That was the first of over 40+ doctors/specialist I was to see until I was diagnosed.

Endless Misdiagnosis

For the next 15 years it became a blur.  I was depressed, angry, frustrated, disappointed, rejected and in so much pain that never seemed to end.  I went to doctor after doctor only to be diagnosed with fibromyalgia, chronic fatigue syndrome, restless legs syndrome, thoracic outlet syndrome, TMJ, irritable bowel syndrome, chronic pain, cluster migraines, complicated migraines, neuropathic pain syndrome, overactive bladder, depression, anxiety and I developed an eating disorder (Bulimia).

I was at the end of my rope in 2006 and had another ultrasound only to find out my results were misplaced until I called 3 months later to find out that I had a 10cm complex cyst.  I was sent to an oncologist who took blood work CA125 to see if I had cancer. The first test done was 37 on my period and 78 when I was ovulating. He felt positive it was endometriosis and sent me to a local gynecologist who told me nothing could be done about the Endo and to take Lupron. I refused, as I had done my research. She then put me on Marvelon21 and sent me on my way. One thing changed for sure right away from taking the birth control pill and that was the chronic nausea was gone within a week, acne cleared up and my mind was right. I really felt like I got a new lease on life.

The Power of Patient Groups

I ended up on Medhelp and found a great group of women that to this day we still talk. We have a private group of about 20 women on Facebook called the BBBC (Bulge Battling Battalion Cysters). Some of the women had cancer, some were in remission, some had Endo etc. They were my support and still are, without them I would have surely not been here today.

I did my research and found the best Endo doctor in Ontario. It took 3 minutes for him to find the rectovaginal cyst that had caused me so much pain all of these years. I was in tears, tears of relief that finally, finally someone knew what was going on. He couldn’t do the surgery because I had previous bowel surgery so he sent me to his protégé and he operated on me a month later.

My story continues. More next week.