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From Lupron Victim to Victims’ Advocate

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Lynne Millican Lupron Victims Hub

After being prescribed Lupron for endometriosis and several IVF attempts during the years 1989 – 1992, I began to experience multiple symptoms and adverse health – virtually all of which were deemed by my physicians as “unrelated to Lupron”. But because there had been such an abrupt change in my health since taking Lupron, I strongly suspected Lupron was responsible, and so started scouring the medical, pharmaceutical, scientific, and government literature for any validating bits of information. Lupron (a.k.a. leuprolide, leuprorelin) is used on women, men, and children for A-Z indications.

Over the course of decades I visited nearly every university and medical library in Boston and had read countless studies and articles, accumulating a significant body of adverse information about Lupron’s effects and risks. Ultimately my health deteriorated further, and home-based internet searches replaced trips into libraries. All this information sat on shelves, doing no one any good, until finally in 2008 a friend created the basic website and the Lupron Victims Hub was born.

The Inception and Goals of Lupron Victims Hub

Lupron Victims Hub was founded in 2008 to serve as a central resource for information not otherwise readily found concerning the drug ‘Lupron’.  Lupron (a.k.a. leuprolide or leuprorelin) belongs to a class of drugs known as “GnRH analogs/agonists” or the “relins” – i.e., Lupron = leuprorelin;  Synarel = nafarelin;  Trelstar = triptorelin;  Zoladex = goserelin; buserelin; histrelin).  Because of personal exposure to the relin, and the large market share that this drug has enjoyed, the website’s focus has been upon Lupron. To a lesser extent, the website also includes risks of other relins, as well as general risks to the relins/GnRH analogs as a whole.

The website exists as a resource for information on the risks and adverse effects of Lupron for consumers, medical professionals, attorneys, academia, and the media.  All my research, information, support, and assistance has been provided pro bono. Contact from victims and families frequently centers on their search for doctors and lawyers to help them – but at present time there is no such ‘Post-Lupron doctor/lawyer referral list’.  Hopefully the future will contain ‘Post-Lupron clinics’, with ample physicians and various specialties devoted to the diagnosis and care of Lupron victims – but currently, although there is a real nationwide need for such clinics, the thought is but a wishful pipe dream.

Twenty five years ago I felt like a lone voice, no one knew anything about Lupron, and no doctors or lawyers entertained a thought of this drug’s lingering adverse events. Now there are thousands of Lupron victims clamoring for help, lawsuits are in the courts and in the pipeline, and several physicians have gone on record about Lupron’s dangers, Lupron’s hidden data, and the serious permanent adverse effects upon women’s bodies.  It would seem that a critical mass is being reached, more media coverage is occurring, and more and more doctors are in earnest trying to understand ‘what the hell happened’ to the health of their formerly vibrant patients.

It took me personally a dozen years of searching post-Lupron to find understanding, caring, and appropriate medical care – a totally unacceptable situation. When doctors and the FDA (see ‘Open Letter to FDA’ ) are uninformed of the drug’s data and risks, they are ill-equipped to understand or accurately assess Lupron’s effects.  The atrocious “doctor visit stories” women recount post-Lupron (including my own) are hair-raising and nothing short of nightmare scenarios. Compassionate, diligent, and proper attention and care of these patients is urgently needed, yet negligently absent.

What We’ve Learned about Lupron

Information pooled on ‘Lupron Victims Hub’ should clearly identify that ‘Houston (and elsewhere)  … “we have a problem”’.  As for goals, I hope that my website will facilitate long-overdue acknowledgement of this public health crisis, and that those entrusted with our health and safety will initiate an investigation into Lupron’s long term adverse effects, remove the drug from the market, and establish appropriate medico-legal advocacy for these Lupron victims.  And any order will do.

Participate in Research

Hormones Matter 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. surveys, click here.

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

What Else Can I Do To Help?

Hormones Matter is completely unfunded at this juncture and we rely entirely on crowdsourcing and volunteers to conduct the research and produce quality health education materials for the public. If you’d like help us improve healthcare with better data, get involved. Become an advocate, spread the word about our site, our research and our mission. Suggest a study. Share a study. Join our team. Write for us. Partner with us. Help us grow. For more information contact us at: info@hormonesmatter.com.

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What if Endometriosis Was a Men’s Health Issue?

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Jordan Davidson

As a health journalist and a co-founder of Endo Warriors, a support organization for women with endometriosis, I often get asked “what is endometriosis?”

Which is funny since it is estimated that 176 million women worldwide have endometriosis and yet no one knows about this global health issue.

Sometimes I say “it’s a secondary autoimmune disease where the lining of the uterus is found outside of the uterus and throughout the abdominal cavity — to varying degrees — causing chronic pain and infertility.

And other times I say “it sucks.”

Nancy Peterson of the ERC said “If 7 million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, Endo would be a national emergency to which we would transfer the defense budget to find a cure.” And, I don’t disagree.

If 7 million American men had unbearable pain every time they ejaculated, no one would ever suggest chopping off their balls. If they went to a health clinic that also offered pregnancy prevention services, we wouldn’t shut those clinics down. If 7 million American men were in pain every time they masturbated, urinated or tried to have sex we wouldn’t tell them “it’s all in their head” or “to take the pain like a man.”  No, we would listen and try to find them a cure that didn’t include castration or drug-induced de-masculinization.

But that’s not the case.

Instead we have 7 million American women with chronic pain related to the tissue in their uterus and their menstrual cycle. 7 million American women who have pain before, during and after their menstrual cycle. 7 million American women who experience pain while exercising, having sex and going to the bathroom. So we offer them chemical-menopause and hysterectomies and when those don’t work we throw our hands up in the air and say “well, at least I tried.” Better luck in your next life, perhaps you’ll come back as a man.

The menstrual cycle is the butt of all jokes directed towards women. Bad day? Is it your period? Is Auntie Flo in town?

Seeing red? Are you on the rag?

No, actually I’m just mad that the idea of healthcare for women makes people want to cover their ears and run screaming.

Free birth control for women?

Great idea!

That is until some political pundit insinuates women should just learn to shut their legs.

Maybe instead we should learn to listen to the myriad of women on birth control for issues beyond planning pregnancies. Maybe women should just get easy access to low cost birth-control without having to recite their medical record.

October is health literacy month and when it comes to health literacy, Americans are kindergartners trying to eat the paste off their fingers.

We think Obamacare and the Affordable Care Act are two different things; getting outraged at the notion of Obamacare yet think the idea of ‘affordable’ healthcare is quite nice.

Access to low-cost health care for everyone? Let’s shutdown the government!

Rather, if we want the government out of our private healthcare, then how about they get out of our uteri as well?

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

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Kerri Russo

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.

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

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

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You Cannot Do This to Us Anymore! Lupron Does Not Work

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My Lupron Endometriosis Nightmare

It was my 26th birthday. My boyfriend and I were entangled in an intimate moment, when I felt my body seize in an all too familiar pain. My body tensed up, forcing me to launch into fetal position and kick my boyfriend halfway across the room.  As he looked at me in complete and total shock, I realized, ‘It’s back’, and curled up in a ball crying.

I had my first excision surgery for endometriosis when I was 24, and hadn’t given much thought to my endometriosis growing back before that episode. Due to a change in insurance, I was forced to see a new gynecologist. Scared and in pain, I did what I thought was right, what any inexperienced patient would do, and put my body, future, and pain management all in her hands.

The Lupron Journey Begins – How Bad Can it Be?

Having previously exhausted every birth control measure, I assumed a second surgery was in order. Instead, she suggested Lupron. Things were different then; the online health-space was mid-development and there were barely any resources dedicated to helping women like me. At the time I thought, “She’s the doctor, she knows better than I do, and even though it sounds awful; how bad could it be?”

The answer was bad, worse then I could have even imagined. Almost immediately, I had awful reactions at the injection sites. My skin became hot and sore, making it hard for me, a preschool teacher, to move around or even sit. I spent days sitting on ice packs, pillows, and heating pads.

Maybe Lupron Does Work

I’ll admit for the first few months I felt better, and I even thought “Wow! What a miracle drug!” I started running again, I was working more and going out with my friends more. I even participated in a 5K for charity. Even my libido was unaffected, actually it went through the roof. I was back on top, despite the school nurse having to see my rear end once a month.

Maybe Not – Lupron Hell

It wasn’t until about 3-5 months into the treatment that all hell broke loose. My Lupron side effects were off the charts and my pain had returned. I was experiencing hot flashes, night sweats, and a major increase in appetite. Within a few months I had gained 20 pounds.  For a slender 5’3″ woman, being over 140 lbs made me feel uncomfortable in my own body. I found myself having awful mood swings, and bouts of depression; my memory was incredibly foggy, prompting my boss to comment that I often seemed in a daze.  I was having migraines and insomnia. Even with Add-back therapy, I suffered immensely.

I wanted to scream at my doctor for ever putting me on this drug. Despite being miserable and wanting out, I was forced to stay on it for 12 months (twice the recommended time). This also wasn’t a doctor in the middle of nowhere, but rather one of Time Magazine’s best doctors, associated with one of New York’s best hospitals. I assumed I must be in good hands, and needed to follow her recommendation. However, my doctors felt a successful patient was one who got pregnant. Although I was a 26 year-old, broke preschool teacher with no immediate plans about having children, it seemed this fact had slipped their minds, along with any concern as to my quality of life; or rather lack there of. Thankfully a second opinion from another specialist gave me the courage to advocate for myself, and to demand to be taken off the drug and given other treatment options, of which I was originally told there were none.

Long Term Side Effects of Lupron

I still have lasting side effects from Lupron. My ovary is enlarged, and ovulation is excruciating. I continue to suffer from night sweats, memory loss, and weight gain. I feel as if l poisoned myself for 12 months.

Now, 4 years later, I have an excision specialist and a diagnosis of deep infiltrating endometriosis, which has required two additional surgeries. Even though I still have pain, I am confident that I have doctors who care about me and will listen when I say I’m in pain, or when I’m not interested in a treatment. If you feel like you know more than your doctor or they’re not listening; then its time to leave.

From Patient to Patient Advocate: The Birth of Endo Warriors

I have used my pain and frustration to co-found an endometriosis organization called Endo Warriors (links below) to help give support and resources to women with endometriosis.

I am writing this article because I want women to know that this drug is not helpful for women with Endo. Lupron was meant for men with prostate cancer and not for women suffering from endometriosis. It does nothing to shrink the disease or for pain management, and in turn makes us sicker. I had little to no issue with my ovaries before and now I have transient cysts, an enlarged right ovary, and excruciating pain with ovulation. This drug is dangerous and it’s not being used correctly. We need treatments that help; we need a cure, not this poison. We need doctors who care! It’s time for us to stand up and shout, “You can’t do this to us anymore!”

What makes me angry is that some doctors refer to this drug as a cure, others as “your only option” when clearly it isn’t. Many women can use it effectively if surgery was not effective, but at what cost? Is the risk of ovarian function worth it? Are the lasting side effects worth it? Doctors need to be honest with their patients and give them resources so we can make better informed decisions about our treatment. Since that doesn’t always happen, I hope everyone learned a thing or two from my cautionary tale. I’m not saying don’t take Lupron, because it might be the right treatment for you. I’m saying that I don’t trust the drug or the research behind it. I believe it was the wrong treatment for me and probably is for many, many other endometriosis patients.

Information about Endo Warriors

If you are battling endometriosis and would like support from other Endo Warriors please contact us:

Email- endowarriors@gmail.com

Facebook- https://www.facebook.com/pages/Endo-Warriors/496001373757588?ref=hl

Twitter- @endowarriors and @jillybean126

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.

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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.

Related posts:

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Endometriosis After Hysterectomy

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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!!!

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The Road to Baby: Fertility and Endometriosis Treatment

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Kelsey Chin

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 28th 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

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