Lupron and Endometriosis – What you need to know

There is no known cure for Endometriosis. In Kenya, we do not have access to excision surgery, so doctors perform ablation surgery and then prescribe drugs to suppress the symptoms of Endometriosis.

One of these drugs is Lupron, also Known as Leuprolide Acetate.

Lupron is a Gonadotropin-releasing hormone that is used to treat hormone based tumors like in breast cancer, prostate cancer, lymphoma, and certain kinds of leukemia, endometriosis and uterine fibroids.

It is also used to reduce testosterone in males, to delay puberty in transgender boys and girls till they are old enough to start hormone replacement therapy. It has been used on a trial basis to reduce urges in pedophiles and other kinds of paraphilia.

Administration

It is injected under the skin or in to the muscle.

Side effects to look out for

  • Menopausal symptoms- hot flushes/ night sweats
  • Mood swings
  • Depression
  • Headaches
  • Pain at the injection site – redness/ itching
  • High blood sugar
  • Insomnia
  • Fatigue
  • Diarrhea/ constipation/ nausea /stomach pain
  • Acne
  • Vaginal dryness/ itching/ discomfort
  • Vaginal bleeding
  • Dizziness
  • Memory problems
  • Joint pain
  • Reduces bone density

If it is inhaled it can cause breathing difficulties, asthma like symptoms and skin reactions.

What you need to remember

Lupron is a prescription only drug.

It is not a birth control method, so you can still get pregnant even if you do not get your periods.

If you have a history of osteoporosis in your family, you need to mention it to your doctor because of it’s effect on your bone density.

You need to eat foods rich in calcium and take calcium supplements.

You shouldn’t receive Lupron if:

You are pregnant or breastfeeding.

You have undiagnosed vaginal bleeding

Ongoing drug investigations

There are on-going investigations on the drug with women claiming that it causes more harm than good. You can watch the video below for more context.

https://web.facebook.com/watch/?v=298942434150564

Have you used Lupron before? What was your experience like?

Resources

www.lybrate.com/amp/medecine/lupride-1mg-injection

https://www.rxlist.com/lupron-side-effects-drug-center.htm

https://www.nwhn.org/lupron-what-does-it-do-to-womens-health/

https://youngwomenshealth.org/2014/08/01/endometriosis-leuprolide-acetate-instructions/

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Hope in A World Of Endo

During a recent visit to my mum’s house I found my pelvic scans dated 9 years ago.

I froze.

One picture unearthed memories. Memories of pain, confusion and despair.
I had archived those memories, so that I could live in the present and enjoy my here and now.

Out of three ultrasounds only one showed something that helped the doctor see that the pain was not all in my head. The other two scans, were the basis of the ‘it’s all in your head’ argument. The most frustrating and infuriating words that can be said to anyone in pain. Anyone battling real, physical, and invisible pain.

During those months, I was scared, alone and in pain. Those make for a horrible combination. One that can push you to accept everything at face value. I didn’t know about the endometriosis resource centers or support groups. My sleuthing skills were in too much pain to be bothered to do more research on the drugs being administered.

image: art by carrie joy

When the side effects came, I wasn’t sure which evil was worse, the one I had lived with for years or the one that I had willingly had pushed in to my glute. It was a literal pain in my butt. And some of its effects have stuck with me like glue. Nine years later it is hard to shake ‘em off.

I wish I knew what I know now about Lupron. I wish I knew that after sending aunt flo on vacation, it would erode my bone density; that it would sink me into a hole, that it would announce free room and board for every calorie looking for a home. That it would take over 5 years to lose that weight. That the sadness would overwhelm me. That I would experience menopause symptoms as a teen.

Just maybe, maybe if I knew all this, I would have made a more informed decision. I would have taken my calcium supplements, I would have sought help and not drowned in tubs of ice cream.

Information is power. Endo sucks! But it would sure be nice to know exactly what else you could be signing up for when you take a drug. I’ll be highlighting the drugs available in Kenya, and giving you the pros and cons of each.

Finally, we need excision surgery in Kenya. That is what hope in the dark world of endo looks like, excision. And healing, by God’s grace.

31 Days Of Endo ~ Patricia Anne Young

Day 16 🙂

Everybody’s journey is unique. You have to make a personal decision to fight endometriosis and to remain positive each day. As we face the pain and limitations brought about by endo, we pray that a cure will be found soon. Despite the pain, we are keeping hope alive.

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Patricia Anne Young first shared story with Lisa of Bloomin’ Uterus early last year. She got a diagnosis over 30 years ago.

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Patti was diagnosed with Stage IV Endometriosis when she was 21 years old.  Today she is 52 years young and lives in Ontario, Canada.  She continues to suffer, but holds tightly onto Hope and has a wonderful network of supportive and understanding friends and family.  Fight on, Patti.  Fight. On. ❤

Patti’s Journey: My Endometriosis Journey, By: Patricia Anne Young

One day after school, my friend invited me back to her place for a swim. We got changed, and I told her I’d meet her outside, as I had to use the washroom… little did I know I was about to become a “Woman”. I was 12…

By the time I was 16, my periods were horrendous, painful, & very heavy, like having Montezuma’s Revenge! My family doctor kept telling me that “all girls (your age) have painful periods…” and then one day I read about Endometriosis in Chatelaine Magazine, so off I went to the library to do some research. When I brought it to the attention of my doctor, he told me to “stop spending so much time in the library and go out and have fun…” But that’s just it, I wasn’t having any fun, I was always in too much pain, or bleeding too heavily to do anything.

One day, in Grade 9, my pain/bleeding was horrible, so I signed out and walked to the bus stop to catch a ride home. While waiting, I became faint…just then the bus arrived, the driver recognized me & he got off the bus to help me on. He asked the person in the first seat to move so that I could sit there, and he could keep an eye on me. He remembered my stop and helped me off the bus. I walked home from there, which seemed like an eternity, but actually, it’s only a 5min. walk.

My mom took me to the family doctor, to find out if there was anything he could do for me. He advised putting me on birth control would alleviate the pain and length of time my period lasted. Mum wasn’t too keen on that idea, being a very strict Catholic; however, she filled the prescription for me.

While I still had quite a bit of pain, it did work for the most part. I had to keep changing prescriptions because I’d start to spot. At age 21 I became pregnant. At 10 weeks’ gestation, my boyfriend of 3 years became physically abusive and I hemorrhaged. Following the termination of my pregnancy, the pain in my uterus felt like Edward Scissorhands was living there! A few months later my appendix burst and while in the OR, the surgeon noted a lot of old blood in my abdomen and asked a gynecologist to have a look. He said: “this poor young lady has Stage 4 Endometriosis” And my journey began…

Between the years of 1987 and 2016, I have had a total of 16 surgeries, met with a number of specialists and have had numerous procedures, including ultrasounds, MRI’s, CT scans, colonoscopies, x-rays, not to mention different therapies such as massage, physio, osteo, pelvic therapy, as well as Lupron, acupuncture and botox injections. I have also been on a gamut of medications from Tylenol 3’s to Oxycodone – Fentanyl Patch to Methadone. I am currently trying Cannabis Oil, with fingers crossed that it brings my pain level below 5/10.

Following a hysterectomy and lysis of massive bowel adhesions in 2007, I was pain-free for 1 year. Then one day while doing the dishes I had an intense pain on my left side. I made an appointment to see my gynecologist, she did some blood work, and sure enough, because an ovarian remnant was left behind, adhered to the Sigmoid Colon, my endometriosis remained active. I had 3 injections, over 3 months, of Lupron, which was supposed to suppress the endo activity, but it did not. Further surgery to remove the ovarian remnant was not advised as it would have been too risky and a positive outcome couldn’t be guaranteed. I was referred to a pain clinic in Toronto for Pain Management.

In 2010 I had to stop working due to the severe daily pain, which affected not only my ability to have a career, but my relationships with family and friends, always having to cancel engagements due to pain, and I could no longer compete in equestrian events, which had been my very much loved passion from the young age of 8. Exercising is difficult, to say the least, even Yoga!  Along with the chronic abdominal pain, I have chronic issues with my digestive tract (hiatus hernia), bowel and bladder issues (IBD, LS, and Chronic Bladder infections).

This disease has greatly impaired the quality of all aspects of my life; however, having a supportive husband, sister & a few close friends have been invaluable when trying to cope with Endometriosis.

Words of Advice for Us:  Early diagnosis is key and your first surgery should be with a specialist that knows about Endometriosis, Excision, and Lysis of Adhesions. Advocate! Do your own research and speak up, don’t be shy, after all this is your body and future at stake. Having an understanding support system in place makes this journey a lot easier to get through too.

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Thank you for sharing your story, Patricia. We are inspired to keep fighting for ourselves, even when we feel like it is us against the world. To be our own advocates. We are praying and hoping that a cure will be found soon.

Keep shining, Patti!

#31 Days of Endo ~ Sarah

Day 15 🙂

23 years after Sarah first sought help, she got it.

Sarah shared her story with Lisa of Bloomin’ Uterus in March last year.

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New to San Diego, Sarah was diagnosed with Endometriosis when she was 38 years old, after seeking help for over 20 years.  Today, a year later, she shares her long and difficult Journey with us.

Sarah’s Journey:  I’m home from this year’s Endo March. I met some lovely people, reconnected with new friends (I’m new to San Diego), and learned a lot. One of those lessons was hard. It’s not as simple as saying Endometriosis changed my life or changed me.

It’s that it, along with other health problems, shaped me and, as all of this runs its course, my identity is changing. Parts of what I value about myself have shifted and this time the change is so deep that it may be irrevocable. I don’t know if I can get those pieces of me back. I used to be strong. I used to be fast. I could paint a painting in a day, code a website so that your head spun, learn a skill and build a 16-hour class around it and teach it inside a week.

When I was a kid, I was the *fastest* kid in the fourth grade. I outran everyone regardless of their height, gender, or age in the fourth grade. And I worked on my grandparents’ farm in the summers. I lifted hay bales. I carried things bigger than me! I was strong. I was fast. And then my body started changing. My weight shifted. My period started.

When I was 15 the pain of it became unbearable, I thought at the time. It lasted 8 days and it was heavy for most of them. I would throw up or pass out sometimes because of my period. I was anemic. I came home from school frequently because of my period. My mother was irritated and didn’t think it was real. And don’t get upset with my mother!

It turns out she had Endo, too. She didn’t get diagnosed until she was in her 50s. So, it’s no wonder she looked at my suffering and thought it was normal–it’s what she was told about her own suffering. And she’d never heard of Endometriosis.

Something else that happened when I was 15 was that I managed to subluxate some of my ribs and score a compression fracture in one of my thoracic vertebrae. The simple act of getting dressed for school is what made this happen.  So, in addition to period pain, there was a constant pain in my upper back–constant and chronic as in every single day, every single minute, there was a pain. The doctor my mother took me to accused me of trying to get out of gym class and didn’t even order an X-ray. I found out about the bone damage 9 years later when I was getting X-rayed for something else.

This set the stage for doctors not believing me about any of the pain I was in.

It also kept me exercising no matter how bad the pain got because I was told that exercising would make my “imaginary” pain better. I took myself to a gynecologist because that was my only option. Thanks, Planned Parenthood, for being a thing. They didn’t diagnose endo. To be fair, no one diagnosed it or considered it for another 23 years anyway. So, I still only have love for them. At least they listened.

I first learned about Endometriosis from a high school friend who had been diagnosed. Her suffering was worse than mine, so I never considered that I could have it. I assumed I was being given accurate information and that my pain tolerance must just be low. I kept my head down, took ibuprofen every day for my back and more for my period, and kept on not getting any better. I took ibuprofen every day for about a decade. I took lots of ibuprofen. Every day. It didn’t stop the pain but made it manageable, tolerable.

I also started taking birth control pills at some point. Some brands helped with my period pain, some made it worse. All of them had side effects that kept me switching or stopping altogether. Benefit to detriment ratios became nearly daily contemplations. At some point, I decided The Pill wasn’t worth it. Pain was a better option.

I’m pretty sure that decision came after I ended up in a neck brace/soft cervical collar from a little traffic accident followed by carrying something bigger than me incorrectly. I couldn’t get my doctor to believe how much pain I was in then, either. So, I took so many ibuprofen than I pooped blood for a few days. When I told my doctor that, she finally sent me for physical therapy, an MRI, and to a neurologist. Needless to say, that was the end of my love affair with ibuprofen. I can take other NSAIDs, but, even now, over a decade later, ibuprofen creates horrible abdominal pain and blood where there shouldn’t be any.

So what about those cramps? Aspirin was my first solution. It thinned out the clots, so that was a relief. It didn’t do nearly as much for the pain. I got really good at controlled breathing and pretending. And I had to pretend. About this time, I had to change jobs due to carpal tunnel and thoracic outlet syndrome. I couldn’t do my lame desk job. I couldn’t paint. I even had trouble cooking for myself. (I will be forever grateful to the Mexican restaurant down the street from me at the time and their mostly-healthy, affordable tacos.)

I started teaching. The classes were intermittent and the pay was good, which allowed me time to recover in between teaching stints. I didn’t always manage to schedule classes around my period, but I tried. Working from bed on the worst days is a luxury most of us don’t have. It’s a luxury I sometimes had. Eventually, my arms and hands improved so I could re-learn all my painting skills, but my period never got better. It was always something I dreaded. And still, no gynecologist gave the pain a second thought. Eventually, I stopped talking about it. I pretended.

Just like I pretended in front of my students. Most days I was behind a computer screen. Some days I was also behind them. So I could keep my voice level–or even happy–while I hunched over, massaged, turned green. And in a decade of teaching, very few students noticed enough to say anything or react. Every now and then someone would mention something about my voice not matching or seeming like I was acting. It’s true. I was acting. I was pretending to be okay. And once, a male student turned around to look at me while I talked…. He did the whole Warner Bros. cartoon shock face reaction and turned back around again. I kept on talking, joking, whatever. Even though my back hurt, my arms and shoulders hurt, my period was Hell on Earth, it was all fine as long as I could still go dancing and still go walking.

My health sometimes kept me away from dancing for months or more at a time, but I always got back to it. I performed a little, even. I spun fire. I belly danced. I even got to perform on the main stage at Rakkasah a couple times. It was a luscious and frivolous hobby, and it got me out of bed. Over and over again, dancing was the reason I got out of bed, left the house. There might be weeks at a time that I didn’t teach–that I didn’t *have* to leave the house. Dancing got me out. Going for walks got me out. And then I fell down hiking. With 3.5 miles to go and the sun waning, I messed up my left leg. No one believed how bad that was either. So I did the best I could. I limped for a couple years. No biggie. I went for shorter and shorter walks. I still danced as best I could. Then I twisted my sacrum. Finally, by lying about what happened, I convinced a doctor to get me into physical therapy. I limped less.

And my period ever so subtly kept getting worse. I had these horrible things called Essure coils put into my fallopian tubes as a form of permanent birth control. I’d given up on The Pill and the risk of pregnancy wasn’t something I wanted to continue facing. Sex became an experiment in torture after that. Any deep thrust was like a knife inside my gut. And my period, yup, kept getting worse. And slowly, I started to bleed in between periods a bit and have discolored discharge.

In November of 2015, I had a period every week. It wasn’t constant blood, just one massive clot every Wednesday. Seriously. Every. Wednesday. So I made an appointment with a doctor to talk about that and an increase in my lower back pain and the leg pain that just wouldn’t go away and about blah blah blah medical history. She was not amused. She was not terribly helpful. She also didn’t really believe me about the pain–except for my period/pelvic pain. She referred me to a specific gynecologist, for an intra-vaginal ultrasound, and for physical therapy. I don’t know if the physical therapy, the ultrasound, or just my body continuing to fall apart was the cause, but inside a few weeks I was barely able to walk at all.

I went back to the doctor–with husband insisting on coming along (yay!)–after literally falling down on the ground because my legs gave out. It wasn’t the first time this had happened, but it was the most shocking and the most painful. My left leg, in particular, felt like there were large chunks of twisted metal in it when I walked mixed in with the feeling of cleavers. The twisted metal and cleaver pains were new. An MRI, some x-rays, and a physiatrist appointment later, I was getting epidural cortisol injections to my spine. They helped a little. The physiatrist said that the amount of pain I was in didn’t make sense based on the testing. Then he added something wonderful. He said, “There must be something else going on.”

When I finally got in to see the gynecology specialist, I had yet another intra-vaginal ultrasound. This one with saline because she thought I had uterine polyps. She was right. That experience was so painful I could barely stand afterward, let alone walk. I was scheduled for a hysteroscopic polypectomy. That also helped with a little of the pain. Again, I was told there must be something else.

After those two procedures, chiropractic and physical therapy visits were more useful. I could get from the bed to the bathroom without resting. I could eventually walk from my car to my appointments without gritting my teeth or taking breaks. The blood in between my periods was gone, but my period pain was no better. It was still getting worse, and the rate of my cute little decline had increased as my physical activity had decreased.

In May, we moved to San Diego. In July 2016, I wept, yelled, and pleaded my way into laparoscopic surgery to remove the Essure coils (and my fallopian tubes because that’s how that’s done) and to look for Endometriosis. I was in so much pain–backbreaking, mind-numbing, fully crippling, life-hating pain–during my periods that I went in asking for a hysterectomy. She talked me down. During surgery, she found extensive Endometriosis. For whatever reason, whether it was all that exercise I used to do, my low-estrogen diet due to Hashimoto’s Disease, or just plain luck, I had very little scar tissue and no adhesions. She deemed it Stage 1 Endometriosis. When the pathology report came back, it verified Endometriosis, said that my removed fallopian tubes showed not only a bunch of endometriosis, but also evidence of a previous burst. It didn’t specify if that was from an Essure coil puncturing a tube or from something else.

23 years after first seeking help, I got it. My uterus prolapsed mild-moderately after surgery. Lupron wreaked havoc on my body after surgery. But, I’m figuring out how to walk again. It’s arduous. It’s frustrating. It’s painful. It’s also working–slowly. This is part of what was so hard about today.

All those little mentions of non-Endo pain mostly have to do with another health condition called Ehlers-Danlos Syndrome. It’s a collagen disorder. People with Ehlers-Danlos are extra flexible and are prone to dislocations, subluxations, sprains, and the like. It also takes us longer to heal. And there’s a higher rate of Endometriosis among Ehlers-Danlos sufferers than among the general population.

And I’ll type this again for my own stubborn benefit: It takes me longer to heal. I am no longer fast. I am no longer physically strong. I have trouble lifting a gallon of juice, let along a hay bale.

And not only did I finish dead last today, I couldn’t even speed up for the photo at the end. I just couldn’t. It wasn’t physically possible for me to go faster. I was already hiding a limp and pretending to not be nauseous. Lisa said not to worry about it, to keep going at whatever pace I could manage (thank you for that). But I do worry about it.

I used to keep myself going because even if everything hurt, I could still walk. As long as I could walk, I would be okay. And I know it’s been less than a year since surgery. I know that I’m still clearing hurdles, even if they are only 3 inches tall.

I also know, as of today, that I have to find new ways to define myself. Because the effort to get well is more important than my notions of who I am.

I am no longer fast. I am no longer strong. These are things I need to accept because, in hindsight, holding on to those two identifiers so desperately probably did me more harm than good in my past recovery endeavors. Pushing myself to get to a goal is not something I can do anymore. The risk of long-term harm is too real.

The difference between being able to physically get myself out of bed or not is as small as turning incorrectly or walking too fast. I have to be okay with just finishing. I have to be okay with not finishing. Because I have to be okay.

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Sarah, thank you for sharing your story with us and for inspiring us to keep seeking our own answers. We celebrate you today and do hope that it has gotten easier over the year. We hope that you’ll be able to do the things that truly set your heart on fire. Sending you lots of hugs!