Share Your Story: Michelle

michelle

Michelle was diagnosed with Endometriosis when 20.  Now 35, and living in La Mesa, California, Michelle shares her Endo story with us.

Michelle’s Journey: My endo story I first got my period at 10 years old. I remember I was still in elementary school, playing in PE when I got my first one. From there, my periods became increasingly more and more painful.

By 15 years old I remember rolling around on the ground in the bathroom, sometimes in so much pain that it made me throw up. I would miss school sometimes but most of the time tried to tough it out. My periods were always at least 7 days long, super heavy and lots of huge clots. I thought that was normal…..I was taught to believe this was all normal.

Then around age 20, I woke up one night in the most excruciating pain, radiating from my pelvis. My first thought was that I was pregnant (because I was not on my period which was always very regular- in fact, I was two weeks away from it). I thought something was wrong. Maybe I was having an ectopic pregnancy? I took something like 20 pregnancy tests and all were negative. The pain continued randomly for about 4 or 5 days. Each episode would last a few minutes, had me doubled over in a fetal position and then would ease up almost like a wave coming in strong and then fading out. This would happen maybe 5-6 times a day and often in the middle of the night. After the first couple days of this, I went to the ER and was told I had cysts and to follow up with my OBGYN.

I went to see the OBGYN who ordered a transactional ultrasound… he immediately told me “I think you have endometriosis”. I had never heard of it at that time. It was 2003 and social media was not really a thing yet. The internet was barely a normal household thing…and no one I knew had it… or so I thought. I was told I had ovarian cysts and fibroids for sure but the only way to check for endo was to do surgery. He explained he may have to take an ovary or a tube depending on what the situation was when they did the surgery. This scared the shit out of me! I thought I would never be able to have kids.

I remember crying that whole day.

Scared about losing my fertility and wondering what they would find. At the time I was married and naturally, we wanted children. The doctor told me his staff would call me to schedule my laparoscopic exploratory surgery the next week and set it all up. A couple weeks passed and I heard nothing so I gave his office a call. The front desk staff told me that they were still waiting on his schedulers and I would be given a call soon. Another two weeks passed so I called again. Same thing…. this happened 3 or 4 times over the span of a couple months. In the meantime, I continued to have this excruciating pain come and go every month right around ovulation time.

The last time I called his office I was told that this doctor had left the practice and he had taken my medical records with him. I asked for his new information and the staff informed me he left and did not provide them with any info so they were unsure of where he went or how to reach him.

At this point, I felt defeated and angry. I asked if I could be seen by another doctor in the office and they agreed to make me an appt. By the time I could get an appointment I had lost my job and my benefits. I no longer had insurance and was unable to be seen.

Not only was I having painful, long, heavy periods, now I was experiencing excruciating episodes of pain during ovulation. At this point, I became obsessed with researching this disease and trying to find an answer as to what could help. Having no insurance and no job, relying on one income, my only choice was to seek help with planned parenthood. I knew they offered discounted rates or could get me approved for free services. The only options they could provide for me with their limited resources was testing out different birth control to see if it would help for the pain. I tried every birth control out there and nothing stopped my pain. Some made it worse and some made me feel crazy and depressed. One made me bleed for 90 days straight!

Of course eventually, I got another job and got insurance again! I saw a doctor immediately and they did an ultrasound right on the spot. The doctor agreed he thought I had endometriosis but was very reluctant to pursue surgery. He felt surgery should be a very last resort and instead decided to treat me with Lupron, a “chemotherapy” drug for prostate cancer that is often used on women with endometriosis to suppress the menstrual cycle and chemically induce menopause. I was willing to try anything so I agreed. I was given two rounds of this drug and was told this was the maximum recommended dosing. Any more would be too damaging to my body.

This drug was AMAZING! It completely stopped my pain! I had no more periods and no more pain since I was not ovulating either. However, I soon started to notice that like birth control, hormonal therapy came with its own side effects. I started losing hair, gaining weight, my teeth started deteriorating, my memory started getting really hazy and I felt like I could never think clearly, I also felt fatigued all the time.

After the two injections, which gave me relief for about 6-8 months, I began work at another job and did not have benefits any longer. Again I was with no insurance and no resources to help with this pain that disrupted my life. And now the pain was back.

So I began to learn to live with it. I would be up all night sometimes in pain, in and out of the bathtub… hot baths and heating pads were my only relief. Ibuprofen did absolutely nothing so I stopped trying that very early on. The constant pain left me with insomnia on the nights I would be struck with it. But for the rest of the month I was living a normal life! I was not going to let 4-5 days out of the month rule my life!

From this point on I spent years just dealing with the pain. I was addicted to my heating pad and eventually developed permanent burns on my pelvis and lower belly. I would use the heat pads on the highest setting and take the protective cover off because it just couldn’t get hot enough. Eventually, I just slept with it all the time on me. It was like my security blanket. I would find ways at work to hide during episodes of pain and just let the pain pass. Being that it only would happen a few times during the day and more frequently at night I was able to still get through my day. The worst part would be if I was driving. Many times I would have to pull over on the freeway during an attack to let the pain pass.

Eventually, after years passed of dealing with the pain, all the while starting a career in tattooing, traveling the world, getting divorced, Dj-ing regularly, doing art shows, hanging out with friends and living my life I decided enough was enough of dealing with this pain! I went back to planned parenthood and a doctor there suggested I try Depo-provera injections. She said I could use this for the recommended 5 years (due to increased health risks including osteoporosis) and see if it helped with the pain. She was convinced since Lupron relieved my pain that Depo would most likely help me as well. Depo provera was AMAZING! It completely stopped my menstrual cycle and I was pain-free for the first time in years! I was able to finally live my life freely without being bound and controlled by my pain. I continued to get the injections every 3 months for the next 6 years. All the while still unable to afford medical insurance, but luckily I had this magical drug.

Finally, in 2016 I got to a point in my career where I could afford to pay for private medical insurance and signed up right away. I immediately started googling OBGYN’s who specialized in endometriosis. I knew I wanted to have kids and knew it would most likely take a while if I ever did find the man of my dreams. I also knew I was a year overdue and was being urged by the doctor I was seeing at the local clinic to get off depo since it was only recommended for 5 years.

I started seeing my new doctor and told him of my history. He agreed I should stop depo and we could finally do my exploratory laparoscopic surgery to see what the situation was. I wanted to be proactive in my health and proactive in preserving my fertility. Especially since I was getting older (33 years old at the time). He scheduled my surgery and in May of 2016, I was laying on the table in a very scary all White sterile room at mercy hospital awaiting to be cut open. This was a very lonely and scary experience for me as I had no one close to me at the time to support or help me through this experience. No parents or even a boyfriend to help me with recovery or just for comfort. I had a couple friends visit while I was off work recovering but I spent the majority of the next couple weeks laying in bed alone in a lot of pain, unable to walk around and ordering a lot of food through grub hub since I was unable to do much for myself.

I was told post-op that they had found a small amount of endo between my uterus and my bowel and that most likely the depo injections were keeping the endo growth minimal. I was so happy to hear this. I felt relieved that it wasn’t worse and that I was considered only Stage I. After recovery my doctor put me on yet another birth control pill to keep any growth from increasing. I knew I wanted to get off birth control for good so a couple months later I stopped taking it. I still wasn’t getting a period and had no pain. I figured the depo was still in my system and had read it could take a year or so to completely detox from my system. I started looking into natural remedies at this time and in the meanwhile, I had met the man of my dreams! I didn’t know it at the time but I figured it out pretty quickly 🙂

Shortly after I looked into acupuncture and found Meredith Jones. She had endo herself so I thought she had to be able to help me and guide me on natural remedies and maybe acupuncture could help me balance my hormones naturally as well. I started seeing Meredith once a week. During this time I started taking supplements and some Chinese herbs she put together for me. I started changing my diet and eating an all organic diet. I also started switching more and more of my personal care products to natural/ non toxic. After 12 weeks of acupuncture and herbs my period finally returned and the endo pain returned upon “ovulation time” as well. The pain returned with a vengeance. It was more severe and more frequent than it ever was before. The pain was coming once an hour now and lasting 10-20 minutes.

I went back for acupuncture a couple more times over the next two weeks and in the mean time scheduled an appt with my OBGYN. I arrived in tears….His reaction seemed concerned but I felt more like he thought I was crazy. He ordered an ultrasound and they found cysts along with a uterine fibroid. After several Visits his recommendation was LUPRON. No thanks, I said. Been there, done that. At this point, I felt like I should seek out another specialist and found the endometriosis center of San Diego at UCSD. I saw another doctor there who urged me to “just get pregnant”. He looked at my ovaries on ultrasound and said they looked great and everything looked normal. He again encouraged me to get pregnant and this would solve all my problems.

At the end of the visit he suggested an anti inflammatory diet. Probably the only thing of value that came from the visit. After this, I stopped acupuncture as I didn’t feel like it was helping me personally and was searching for other ways to aid my body in healing. I started reading as much as I could and again became obsessed with learning all I could as to what could help me stop the pain while also preserving my fertility. I read day and night. I read medical studies, blogs, books, articles, anything I could get my hands on about endometriosis and healing the body naturally.

The next month the pain returned even worse than before. I was in pain for 14 days straight now starting at ovulation and ending just before my period came. Again I was in pain every hour for 10-20 minutes. The pain was stabbing, burning and muscle contraction pain. I could now feel the pain in my intestines on the left side, my bowel and my uterus. The pain radiated all over my pelvis and abdomen. I was on the ground, fetal position, can’t talk, can’t walk, can’t think kind of pain. I couldn’t sleep, eat or do anything. This was the most horrific pain I have ever experienced. At one point during this two weeks, I remember being in so much pain I could not move a muscle. I layed flat on the ground paralyzed in pain so bad that I couldn’t speak or move at all. The only thing my body could do was release tears from my eyes while I stared up at the ceiling praying for it to stop. At this moment I felt like someone had dropped a cinder block on my pelvis. The pain was electric and radiated through my whole body. I felt for the first time I was having an “out of body” experience. My husband (boyfriend at the time) hovered over me panicking and all I could do was lay there until it passed.

This began to become a pattern.

Every month.

14 days of constant excruciating pain all day and all night long.

It began to take a tole very quickly on me…Mentally, emotionally and physically. Naturally, I was unable to work and began missing over two weeks of work every month. I continued researching what I could do, trying to remain positive, yet honestly at some points feeling suicidal out of desperation to escape the pain. This kind of pain is traumatic, relentless and excruciating. Far worse than I ever thought was possible. This kind of pain I could only compare to being held hostage and tortured day in and out except nobody was doing this…my body was doing this to me. The worst part was not knowing when it would stop. These are the times that lead me to desperate thinking.

Enduring pain is one thing, but to endure constant, severe pain and not know if it will ever end is literally hell on earth.

I soon after started the AIP Paleo diet. This is a very strict version of the Paleo diet that eliminates all foods that could possibly cause inflammation. No sugar, caffeine, eggs, nightshade vegetables (tomatoes, potatoes, peppers, eggplant etc), no spices, no alcohol, no bread, gluten, soy, no dairy, no grains, nothing processed at all and everything completely organic. Basically paleo on steroids. I also began food sensitivity testing to see what foods might cause inflammation in my body and eliminated these as well. My already very limited diet was now even more limited. Every meal I ate I had to prepare myself. Or my amazing wonderful supportive husband would prepare for me when I was unable to do anything but lay on the ground in pain. This meant a life of no fun. I was in constant pain and was also avoiding any of life’s little rewards or treats. There was no longer anything I could do to add a little fun or happiness to my day. Everything was calculated out that could possibly cause any delays in my healing. It became an obsession. I switched all of my makeup, personal care, and cleaning products to non-toxic. I ripped off my fake nails, took off the eyelash extensions and went completely natural. I started taking even more supplements and ones that were specifically good for endo. I took supplements that were made to metabolize bad estrogens and help balance my hormones. I even drank teas to help detox my liver and cleanse my body. I got rid of all the plastic containers in the house, threw out all the Teflon pans, and started drinking alkaline water. At this point everything I put into my body was for a purpose and that was to heal myself.

I started using CBD, got a tens machine, started doing yoga, started meditating, anything I could do to help myself with the pain and heal myself. I was obsessed and motivated to cure myself. My pain continued month after month… after about 4 months of strict AIP, losing 30 pounds and completely changing my entire lifestyle I began to see a difference in my pain levels and frequency of pain. The pain was now only lasting 9-10 days a month and the severity of pain was decreasing. I was happy with the improvements but I was expecting more, was exhausted and frustrated. I was still suffering, still losing 9-10 days of sleep, still throwing up every month the day before the pain and “ovulation” hit and still feeling depressed, stressed and anxious. Losing that much sleep every month takes a mental toll on a person. Severe sleep deprivation had its own variety of side effects.

At this point, I began seeking out a naturopath and was recommended a homeopath doctor by a friend who said she was able to help her balance her hormones. I began seeing a woman named Andrea who helped me with further food testing, adjusted my diet slightly and ordered hormone panel tests for me. She also put me on a 6-week full body detox system. At that point I was taking 12 different supplements under her care, detox drops 3 times a day, drinking a detox water through out the day and doing food testing every 3-4 weeks at each visit. I was literally doing things all day every day to try to heal myself. That’s how desperate of a situation I was in.

After seeing Andrea for about 5 months she put me on some creams to help my hormones balance naturally based on my hormonal panel results. I also started seeing a pelvic floor physical therapist due to the “aftershock” of pain I had once all the pelvic contractions would stop. The endo pain would stop yet I started experiencing musculoskeletal pains due to how bad and how frequent the endo pain was. These constant contractions began to make my pelvic floor muscles weak and tight. It felt as though all my muscles in my thighs, butt, pelvis, and abdomen were failing. This was a new side kick of pain called SPD and pelvic pain. I decided to finally give in and see a pain management doctor after 9 months straight of this. It was a long process to get approved for pain meds but my husband and I agreed it was only going to be beneficial for my mental state to have some sort of physical pain relief while I tried to heal my body.

I procrastinated on this for so long, wanting to keep all chemicals or anything toxic out of my system to prevent any interruption in healing. I also knew the reality of the severity of my pain and that it would take very strong drugs to alleviate any pain. I had tried a morphine pill, which did nothing and a Percocet 30 mg and neither was able to give me relief prior. The pain management doctor took a while to figure out exactly how much pain I was in or maybe believe how much pain I was in, but eventually gave me something that was able to somewhat take the edge off. I still was in a lot of pain, still unable to sleep or do much but honestly it did make me a little less miserable. I had my husband keep tabs on my dosing and made sure he knew and was clear on what I was taking and when to ensure no misunderstandings happened during my use of the drugs.

About a year into this new life of pain and agony and about a month of using the creams I had got from my homeopath, I missed my period. I thought, great. Now my period is delayed and now I will have to adjust my already fucked up, minimal schedule at work since now ovulation and therefore pain would be delayed as well. After two days, and still having pelvic and SPD pain, I curiously took a pregnancy test. To my complete shock it said positive! I could not believe it. I told my husband and his mouth dropped open and we just looked at eachother in shock! We had both wanted to have kids, and it was part of the plan, but we gave up on the idea probably 3 months before this due to how much pain I was in and coming to the conclusion that It would probably never happen because of my battle with endo. The pelvic pain continued randomly through the next 10 weeks or so but eventually ceased.

I am now 32 weeks and have only experienced a few pains here and there reminiscent of endo pain. I am so grateful for this little miracle growing inside me. My little baby boy. I honestly thought I would never be a Mother, which was devastating to think about. I am also grateful every day that I am not dealing with the agonizing pain of endometriosis. That being said I fully intend on having a natural unmedicated childbirth for several reasons:

One, is to prevent any interventions that might lead me in the downward spiral towards a C- section. For me, having endometriosis, a C-section could pose an opportunity for more endometrial growth and adhesions due to more scar tissue. Which could lead to more pain and more problems in the future. Any further surgery is the last thing on my to due list.

Secondly, I want to go through the experience that many women have gone through before me. I believe there is a lot of fear surrounding childbirth and I don’t think it should be that way. I believe I can do it and it is on the life bucket list.

Third, I want to compare childbirth to the horrible pain and agony I have lived through with endometriosis. Childbirth at most usually lasts a couple of days. I have endured weeks of constant relentless pain and I know other women have too. Because of this, labor pain does not scare me. I have a very good feeling that labor will be a lot like the pain I was in before getting pregnant, but the only way to know for sure is to experience it myself. In this way, I would like to spread more awareness about how devastating this disease is and how serious it is.

In the past couple of years, I have heard of several women who have ended their lives to escape the pain of endometriosis. This is a tragedy and no one should have to go through what we go through. With more awareness, hopefully, a cure will be found. SOON!

My main driving force, my motivation and my courage have all come from my husband. If I didn’t have him supporting and encouraging me, I don’t know that I would have survived through all of this. He is the most important and valuable person in my life. He has witnessed me in the worst state and at my lowest points of life and has still stuck by my side with a smile on his face. I only hope all my endo sisters could have a partner like him.

This is not the end of my story. I can’t wait to share my experience of childbirth. My hope is my pain will magically disappear after pregnancy and never return. But either way, I will continue to spread awareness and be a voice for this disease.

Words of Advice for Us:  Never give up!!!

If you wish to contact Michelle, you may email her here.

I want to send a special Thank You out to Michelle. for being brave enough to share her personal story, struggle, and victories with us today.  What a harrowing journey, indeed!  Kudos to you for being strong enough, both mentally and physically, to endure what you have.  And thank God you have such an incredibly supportive husband!  Congratulations on your pregnancy! And we’re wishing you and your family all the best.  If you ever need anything, you know where to find me. You are a beautiful, brave, and strong woman.  Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

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