Yellow – The Colour Of Hope

I’ve always had a soft spot for yellow.

Yellow represents warmth, love, and joy. The warmth that is toasty but not too hot, and the love that you don’t have to question or second guess, it just is. The kind of joy that fills your cheeks with giggles and causes you to smile involuntarily.

Yellow is not just the colour of emojis, it is the colour of hope. Hope for Endometriosis Warriors. It is an invitation to speak. It is the essence of who we are, a symbol of the type of days we long for.

Endo Sisters East Africa have launched the Yellow Nails Movement to start the conversation about Endometriosis.

You can have your nails done at a discounted rate at one of the participating salons. These are Ashleys Coiffure and Spa (Nairobi, Nakuru and Mombasa), Urban Hair (Nairobi), Blessed Salon (Nakuru), Mitch Beauty Parlour (Nairobi), Nail Perfection (Nairobi), Grace beauty Salon (Thika), Miracle Salon (Zimmerman) and Geanna Beauty World (Kisumu).

If you’d like to have your nails done at a non-participating salons but desire an information pack within Nairobi, you can pick an Endometriosis information flyer at Cablanche Boutique in Adams Arcade and at Rimis Men’s shop at Ridgeways Mall. You can also contact Endosisters on Facebook.

Yellow is the colour of hope, joy, peace and love.

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Where Dreams Fizzle And Fade~ Endo And Your Career

The sight of blood changed my mind. It wasn’t so much the sight, as it was the experience as a whole, the texture, the colour and the pain. As a little girl, I spent hours daydreaming of myself treating little children and seeing them smile again. Having been well acquainted with the pediatrician, it was only natural for me to follow in her footsteps.

My dreams trickled away, I can’t tell you the day the tap run dry, but I can tell you the days there was short supply. In all of the tales, my period is the constant. For someone who thought they could handle sick people and blood, I was awfully grossed out by my own blood, and worse still, it made me sick.

My energy was sapped, I’d writhe around in pain on the cold tiled floor and finally lie in a pool of my tears. My periods killed my dreams.

When I started working, it only got worse. The pain was disruptive and destructive. It came anytime and lasted as long as it wanted. My reproductive system dictated my lifestyle and work schedule. I had lovely employers who accommodated me and my body’s failures. My second place of work was not as flexible and the stress of the workplace took a toll on me. I cried everyday without fail, my body hurt, and my mind was never at rest, so I left. I left to rest and to start a life that could accommodate my life and my body’s quirks.

An endo-sister recently shared with me how she’d have made different choices in her career if she knew it was Endo. I completely understood where she was coming from. My endo journey has taught me that it is okay to start over, to learn a new skill, and to figure it out as you go. My greatest lesson is: It is good to plan, but when your plan is disrupted, adjust to what life hurls your way.

When It Floods – Endometriosis & Heavy Flow

Big girls wear diapers too.


My girls talk a lot about diapers, my little one is potty training herself. No, really, she woke up one day thia6 week and declared that she was a big girl who didn’t need to wear diapers.  So she graduated to knickers when we are home, this isn’t without accidents and a love-hate relationship with the potty. But, the bottom line remains, diapers are for little girls.


One of the things that I loathed about my periods was that I always received the el-nino version, complete with hail stones, also known as the clots. It was heavy, messy and destructive. It had me longing to stay indoors, to stay tucked in bed, except, it stormed in bed too, and sheets aren’t woven to absorb the red sea. 


I’ve legit thrown away some garments before. I made the grande error of washing off – more like, attempting to wash off – a blood stain with hot water. It bonded. The red carved a home in the threads and refused to leave. I’ve been terribly embarrassed by my periods. Had my self esteem plummet during my periods. I couldn’t trust my uterus not to let me down. The flow sometimes felt like a breast-milk let down, urgent, forceful and absolutely beyond my control. 


I’ve layered and improvised to try to contain the flow. I’ve set reminders to wake up and turn during the night, because the pad just wasn’t loyal. Even layering the pads was not effective in holding back the red sea.

An endo-sister recently shared with me that the one thing she wished that she knew is that adult diapers were an option. 
I never thought of them as an option, in fact, I always considered maternity pads the next best thing. I think it’s a brilliant idea. A lifesaver, and self esteem redeemer.


Big girls wear diapers too. 

31 Days of Endo ~ Lyndsay

Day 23 🙂

I am catching up slowly! I hope you’ve had a great Endo awareness month so far.

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Today we highlight Lyndsay’s story as she shares her journey with Thoracic Endometriosis. Lyndsay shared her story with Lisa on Bloomin’ Uterus in January this year.

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Lyndsay was 32 years old when she was diagnosed with Endometriosis.  Now 37, she lives in Pittsburgh, Pennsylvania, with her beautiful family and wants to share her Endo Journey with us.  Lyndsay is one of the rare EndoSisters whose lungs are affected by the disease!

Lyndsay’s Journey: I always had painful periods as a teenager, and into my twenties. I didn’t really think anything of it at the time.

At age 26, I was in a car accident where I was the passenger. The SUV rolled a few times as the driver had swerved to avoid a deer. We climbed out of the windshield, appearing unharmed. Paramedics checked us out and said we looked fine. I followed up with my doctor since I still felt off a day later, but she also said I seemed fine.

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It was a little over a year later, I was working out at the gym and had a strange stomach pain. It got worse as the night went on, and I ended up in the hospital. I waited for almost 8 hours before I saw someone in the ER (my vitals were normal, so I was not deemed to be a priority). When they finally were able to check me out, they did an X-ray to see what could be causing my issues. It turned out my diaphragm had ripped open, and my organs had pushed up into my chest cavity, and partially collapsed my right lung. They asked if I had been kicked by a horse (I hadn’t) or if I’d been in a car accident. I told them I had over a year ago.

My issue puzzled the ER, and they sent me into surgery with 3 different surgeons – a general surgeon, a thoracic surgeon, and an ob/gyn. My surgery took over 8 hours and we learned a lot.

  1. It appeared that my liver had a strange ring around it and they said it was likely that during the car accident, the liver was pushed up through my diaphragm and remained wedged in there for over a year. (Note that during that year, my periods were more painful than I’d ever experienced);
  2. The car accident had left one of my Fallopian tubes crushed;
  3. I had endometriosis in my uterus / abdomen;
  4. The liver being shoved into my chest also damaged my right lung leaving it 10% collapsed for over a year.

I came out of surgery with a chest tube on the right side. After a few days in the hospital, they removed my chest tube and sent me home. My chest filled up with blood after I was sent home, and I had a series of visits where they would drain liters of bloody liquid from my chest.

Eventually, I had another surgery on the right side and a chest tube put in to clear up the issue. I spent weeks in the hospital and eventually, they sent me home with a portable chest tube device (it has some German name that I can’t recall). The home health nurse that came to check in on my lung issue/chest tube device wasn’t properly cleaning her tools she used to remove the fluid from the device, and after a week at home, I ended up with a pretty serious infection along the chest tube site.  I was hospitalized again, and after a few more weeks of treatment, and gradually removing the chest tube, I had stabilized.

Fast forward 2 years. In this time, I got married and was pregnant with my first baby. The pregnancy seemed to be going well until I hit about 20-22 weeks. I was gaining weight normally, growing the way I should be growing, etc until about week 22. I started to plateau. I also had a nasty cough and started to lose weight. I consulted my ob/gyn (I switched to the practice that was involved in my surgery since I thought they knew the most about my medical history). When I voiced concerns about my weight loss, I was told by one of the female docs in the practice that “you are the type of person who doesn’t like to gain weight”…. I told her she was wrong and I was trying to eat the best food for the baby and at this point was drinking ensure to gain weight. She dismissed my concerns.

Things got worse as my pregnancy went on. I lost more and more weight, got short of breath very easily, and after almost going into labor early, was placed on bed rest for a few weeks until I demanded to be seen to check in the baby (the practice was very dismissive of my concerns – at this point, I was puking, had diarrhea, and looked very emaciated). I demanded to have an ultrasound to be sure the baby was okay. I went into the office and was immediately shipped off to labor and delivery to have my baby. Once I was dilated 9-10cm, pushing out the baby wasn’t so bad. I had a horrible cough, but actually, my coughing/gagging helped my body to push my son out of my body. He was born in about an hour and was a 5lb 2oz healthy baby boy and I was so happy.

I felt off physically after I gave birth, but was assured that it was normal to feel that way. I would talk and lose my breath for like a full minute. After persistently asking to have someone help me with my cough/ breathing issue, (they tried to send me home telling me I was fine), a doctor in another department saw my history, knew I’d had collapsed lungs before, and ordered a CT scan. So after my 3 wonderful days with my baby, I was told my lung had fully collapsed on the right side and that I’d need to go into surgery to repair it. I was devastated that I wouldn’t get to spend every minute with my new baby but knew I had to fix my lung. I had the lung repaired, had 2 chest tubes, and was in the hospital a little over a week.

Going home was such a great feeling so that I could reunite with my newborn. The cause of the lung collapse was still unknown at this point, but the guess was something related to the childbirth had irritated it. They estimated that if I got pregnant again, there would only be a 15% chance this would happen again.

Fast forward 2.5 years, I was on vacation and it happened to be a period week. I took Seasonique at the time which allowed for only 4 periods a year which I requested due to how painful they were. I was coughing and I coughed up blood. I started googling “coughing up blood on your period” and for the first time saw an article about how some people had endometriosis in their chest cavities and could cough up blood during their period.

I called my thoracic surgeon to tell this to him. We discussed options for a bit and his suggestion was basically, “if you want another baby, I’d try to get pregnant soon and then I’d get on a birth control pill and not ever take the blanks, but also consult with an ob/gyn”.

A few months later (thankfully) I got pregnant, and actually made it through most of this pregnancy without issue, however, I also went into labor early with this one and gave birth to a baby girl. I did dilate up to 9cm and while they were getting ready to deliver, they noticed she was breech, and I had to be quickly sent into surgery to do a c-section to deliver her. During surgery, my ob/gyn noticed a lot of strange weblike tissue in my abdomen. He cut it all out for me, and sent some to be biopsied. It wasn’t determined to have some endometrial implants on it. My daughter was healthy, but tiny. She was 4lbs 15oz, and while we were all sent home from the hospital together, when she went in for her first doctor visit the next morning, her body temp was too low and she had to be admitted to children’s. My husband took her since I was recovering from my c-section and the same night, I ended up in the ER with chest pain. It turned out both sides of my chest filled up with blood.

My surgeon surmised that if I did have endometriosis in my chest cavity (he thought it traveled there after my car accident), that the surge of hormones during delivery most likely caused the crazy bleeding. He suggested a lot of walking (20 min 3 times a day) could help keep my lungs expanded and push out the fluid. After a few weeks of that, my lungs were back to normal. My daughter also was out of the hospital after 5 days. She just had to gain some weight to be able to hold her body temperature. She and I were both home recovering together.

About 7 months later, I had some severe stomach pains and ended up in the ER. They diagnosed me with stomach ulcers. After a few weeks on antacids, I ended up back in the hospital with a collapsed right lung. After 2 failed pigtail catheter attempts, I ended up with 2 collapsed lungs. I had the pleurodesis done on the right and had 2 chest tubes placed on that side and 1 on the left. The pleurodesis is a procedure which irritates the chest wall to make it sticky so that the lung will adhere to the chest wall and not be able to collapse. The left side healed quickly (relatively) but the right side did not. Pleurodesis didn’t work evenly. Another chest tube placement was tried to get the doxycycline into different areas on the chest wall to try to get the lung to stick. It stuck in a strange web-like formation leaving a few pockets of space. One pocket was a part of the lung that still had an air leak.

I was in and out of the hospital over a 6 month period including a 6-week hospital stay and an 8-week hospital stay. I went home for a few weeks with a chest tube unit (the large one that wouldn’t allow for infection). Finally, they decided to remove the chest tube even though leak remained. The lung was stable even though the hole was still there. I was stable with the web-like right lung for 3 years.

Fast forward to daylight savings time one year … I had been taking birth control pills without the blanks for a few years without issue. I forgot this year to adjust the time I take my pill. I have an alarm on my phone that goes off at 9pm every day. Well a few weeks later, my lung collapsed. It happened just after Thanksgiving. My doctor allowed me to wait out the holidays with my family and come in January to get a chest tube. I was thankful to spend Christmas at home since I had missed Christmas the year my daughter was born. He tried just the small pigtail catheter in January. It worked temporarily, but I had another collapse in March and opted to do the pleurodesis on the left side. It seemed to work and expected to be the more permanent solution.

I made it until October before having another issue. It seemed as though the very bottom of the lung had come “unglued”. After this repair, I went to consult with Cleveland Clinic in their Pulmonary Medicine Department and also talked to the Head of Thoracic Surgery. They both said that they had nothing new to offer, but confirmed the steps my doctors had taken were what they would have thought to do. In their 20 years at the Hospital, they had only seen 1 other case similar to mine. They explained to me that I most likely had microscopic endometrial implants in my chest cavity. The implants bubble up during a period and then the bubbles pop when the hormone is no longer present. They suggested consulting more with an ob/gyn but also said that once I hit menopause the issue would go away.

Today I am writing this while in the Hospital less than a month from that conversation in Cleveland. My insurance changed my birth control brand to a generic. It had the same active ingredients, so I thought it would be okay. I had break through bleeding, and a week later the left lung collapsed. I had pigtail catheter chest tube installed on the left to suck out the air and allow the hole to heal. I am having my doctor write a prescription that requires me to remain on my current brand of birth control to prevent this from happening. It was encouraging to hear everyone’s stories, and if you can actually make it all the way through my crazy saga, I hope it’s helpful.

Words of Advice:  If you are treating a lung endo issue with birth control, be careful about switching brands and remember to adjust for daylight savings time. Be strong and hang in there. It helps to take it just 1 day at a time and remember every day out of the hospital is a good one.

The Last Word: It’s comforting in a way to know that others have the same issue as me. Every time I tell my story to people, they look so horrified and have never heard of lungs collapsing due to endometriosis. I am happy to have a community of others with crazy endo issues.

If you wish to contact Lyndsay, you can email her here.

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Thank you for sharing your story, Lyndsay. We are praying that a cure for Endo is found soon. May God’s grace and strength be sufficient for you as you battle endo and balance being a mum and wife. Here’s to happy, pain-free days ahead.

❤

31 Days Of Endo ~ Unsilenced

Day 22

Individual’s stories are like dominoes, they look small, but they have the power to start a revolution and change the status quo.

Two years ago, Arti Shah, resolved to tell the story of Endo warriors living in Kenya. At the time, I had come to Nairobi for the annual Endometriosis of Kenya event.

This documentary is a beautiful symphony of voices that were once stifled and muffled by pain, despair, and shame. Arti has beautifully put them together and presents the trailer of Unsilenced.

One day Endometriosis will be a household name. Please watch and share.

 

31 Days Of Endo ~ Saum Hassan

Day 19 🙂

“Our goal is to make Endometriosis a household name.” ~ Michelle Lee Walters

The reason we share our stories is so that other women will know that they are not alone. Though some symptoms may seem peculiar, we need to understand that Endometriosis cannot be put into a box. It presents itself uniquely in every woman.

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Boldness, courage and strength are words that can be used to describe Saum Hassan. She is a 36-year-old  who lives in Kisumu and works as a counselor for a preventive Healthcare Provider. Her heart is filled with joy when she positively impacts other people’s lives. She has been living with umbilical endometriosis for the last one year.

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I started my periods in 1995 at  the age of 13 and I was excited about it. My peers used to sit and gossip together and call you a child if you hadn’t seen your periods. I was happy that I could now enjoy their company. My menarche was smooth and  I felt normal even though a few other girls would complain of cramps. Then, things changed in October 2002 when I was woken up by a sharp pain in my lower abdomen. I lay on the floor, writhing in pain as I literally screamed the house down and woke up everybody in the house. I saw my elder sister walk out and return with a small tablet on her palm and a glass of water. I took it and felt the relief wash over my body ten minutes later. I slept well and thought that was the end of it. Little did I know that it was just the beginning of a new journey altogether.

In the following months, I experienced pain accompanied by nausea, vomiting and loss of appetite. I gave birth in 2010, and when my periods resumed post delivery, they were worse than anything I had ever experienced. My frequent visits to the hospital didn’t bear fruit as the Doctors told me that the pain was normal.

I resulted to self-diagnosis with the help of Google when I started bleeding from the navel every month from March 2017. Just thinking about dressing my navel was very challenging, but I am more comfortable doing it now, since I have been doing it for a couple of months. During my research, I learned about Umbilical Endometriosis and my story was aired on NTV in February 2018 and K24 on 7th March 2018. As a result many doctors have confirmed the diagnosis though I am yet to go for a laparoscopy to get a proper diagnosis.

To treat the pain, I have been using Ibuprofen, diclofenac, and powergesic at home. When I got to the hospital I am given diclofenac and buscopan injections and also morphin intravenous. Sometimes, a towel dipped in hot water and a hot water bottle help to relieve the pain slightly. Drinking ginger and black pepper tea also offer some relief.

Endo has robbed me of my sense of fashion. I no longer wear skirts, trousers and anything clothing that puts pressure on my waist, due to the constant pain around the abdomen and navel throughout my cycle. Physically, I can’t stand for a long time because my legs start shaking. Sitting is also a problem because I can’t sit straight or lean forward. My social life has been affected because I have to keenly watch what to wear during those bad days and the days after my periods.

I’ve had to make several lifestyle changes including changing my diet.  I have reduced my intake of red meat and sugar. I drink a lot of water and have ginger and turmeric water every morning on an empty stomach

Eight years later, I am still trying to conceive as I hold my marriage together. Sticking to my new diet seems daunting, at times I ask myself if I will really be able to manage it.

Through this journey, I have learned that Endometriosis is real! Women to take reproductive health seriously. More awareness is needed to reach more women and young girls. Sharing stories inspires others to also open up. Doctors should be well equipped with the knowledge of how to help women facing this issue.

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I have found a good support system in the Endometriosis Foundation of Kenya. I have joined both the Facebook and WhatsApp groups and found women who have encouraged me. I realize that I am not alone. It’s important to have a support system, because that’s where we get strength and hope. I’ve been encouraged by the other endo warriors like Elsie Wandera, Njambi Koikai, and Ciru Muriuki.

My favourite flower is the Sunflower. Its brightness throughout gives me light and no matter how dark this endo journey may be there is light at the end of the tunnel.

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You can send her an email, or follow her on Facebook and Instagram.

 

Thank you for sharing your story with us, Saum, and for being bold enough to speak for the women who are suffering in silence. We pray that you get a diagnosis and treatment, and that you will have adequate grace and strength for the journey ahead. By God’s grace, may you hold your child in your arms soon. We are praying that a cure will be found soon and that the suffering of women will come to an end. Here’s to more happy and peaceful days ahead!

❤

31 Days of Endo ~ Tara Langdale-Schmidt

Day 18 🙂

One of the symptoms that Endowarriors may experience is pain during or after sex. The pain can turn a previously enjoyable experience into an emotionally devastating moment.

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Tara Langdale-Schmidt is an endo warrior who has created a non-surgical intervention for painful sex. Necessity is. She shared her story with Lisa of Bloomin’ Uterus in November 2016.

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Tara Langdale-Schmidt lives in Florida, and was diagnosed with Endometriosis when she was 11 years old! She also suffers from Vulvodynia.  Now 32, Tara invented a treatment that is helping women who suffer from pelvic pain all over the world. Today she shares her story and struggles but also shares her victories.

Tara’s Journey: It started when I was 11 with my first surgery. Doctors did not know what was causing my abdomen pain so they the scheduled exploratory surgery. They found a huge cyst which had cut off the blood supply to ovary which killed it. They removed that ovary and tube. This was the first of many surgeries for cysts and endometriosis over the next 20 years.

Endometriosis caused pain during sex, it was an uncomfortable feeling deep inside that I became used to. My sex life was normal besides the endometriosis pain. Initial penetration was never painful until I started to experience a different kind of pain, a very sharp pain I had never felt before.

My nightmare experience with sexual pain began mildly and I started going downhill in 2010. It began as mild pain during intercourse in my vulva. As time when on, the pain became worse, it felt like someone was stabbing me with a knife and burning me at the same time. Intercourse would trigger the pain and it would still burn after having sex. Nothing helped the pain or made it go away. I only told my best friends, and they had never heard of anything like what I was experiencing. Neither had my fiancé, Jason.

I didn’t know it then, but I was suffering from the excruciating pain of Vulvodynia. The pain, both physical, emotional and mental, was agonizing, made it impossible to enjoy sexual intimacy with my future husband and impacted my quality of life for four long years. The burning and stabbing escalated and I would not have sex at all with Jason. We were getting married and probably not going to be able to have intercourse on our wedding night. I was becoming depressed at the thought of never being able to have enjoyable sex again.

My primary gynecologist told me if sex hurt to drink some wine and take Advil. That was in the beginning stages before the pain became worse. Then he realized it was serious, I still didn’t have a diagnosis and I was confused and worried about what was causing the pain. I actually asked my doctor if I had something called Vulvodynia because I found it on the internet. He agreed that is probably was Vulvodynia. He wanted me to try the numbing creams and after that, he called several doctors and told me none of them had a treatment plan for Vulvodynia. He stated doctors did not know what caused it and he was sorry he couldn’t help me. I was given a prescription for Gabapentin cream and Ketamine creams. These are compounded creams, that might help the nerve pain, I was told to use twice a day. Both of these creams cost over $125 each and did not help at all. Also, I tried lidocaine injections which only lasted an hour and left me hurting from the needle. I had many surgeries for endometriosis and cysts, and one surgery they went in vaginally instead of through my abdomen. I thought that maybe the pain resulted from scar tissue. My doctor also thought it could be scar tissue as well.

After no relief with numbing creams, I decided to go to a pelvic pain specialist. He told me that I could take an antidepressant because it can help with nerve pain, do an injection or have a surgery to remove part of the vestibule that was hurting. I did not like these options. I do not like taking painkillers and especially not before sex. After suffering for so long and getting no answers I decided to take matters into my own hands. I had to take action.

From my previous positive experience using magnets to reduce back and neck nerve pain after a car accident, I had a “lightbulb moment” idea to incorporate neodymium magnets into a dilator set for pelvic pain. I used the magnetic dilators for two weeks and then had sex with my husband for the first time in months with less pain than normal. I had just started using the dilator for the first time about three weeks prior to my wedding and I was actually able to enjoy my wedding night. I didn’t think that was going to happen. My husband, who was so supportive, was as thrilled. I was able to have sex without pain.

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Due to my reduction in pain and positive feedback after speaking to doctors about my magnetic dilator treatment and pain reduction, I knew I had no option but to create a startup company dedicated to helping other women with pelvic pain. With my personal pain issues resolved, I knew I had to help other women. Working with my good friend and business partner Robert Smithson, we together founded VuVatech, a company based in Sarasota, Fl. dedicated to helping the estimated one-in-seven women in the US who suffer from pelvic, vulvar pain. With the help of medical experts, we invented a medical device, the VuVa Magnetic Vaginal Dilator that has proven to relieve pelvic pain and sexual discomfort and has improved the lives of women seeking sexual normalcy.

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VuVa Magnetic Vaginal Dilators are a new, non-surgical approach to helping millions of women suffering from multiple pelvic pain conditions and sexual comfort. The dilator therapy can also be incorporated into treatment plans for other conditions such as Vaginismus, Vulvar Vestibulitis, Dyspareunia, Menopause, Vaginal Stenosis, Vaginal Atrophy and Vaginal Dryness. Many women suffering from these pelvic pain conditions have been placed on heavy pain medications, anti-depressants or have been advised to have invasive surgeries with low success rates.

Our VuVa Dilators offer a low cost, safe, non-invasive treatment option to renew the sexual desire and comfort women deserve. Since VuVa Dilators became available on the market in late 2015, we have only used social media, google ads and pelvic pain forums to direct traffic to our website. After selling over one thousand dilators and receiving positive feedback, it validated our decision to perform clinical trials. Clinical trials have provided beyond positive results by reducing nerve pain in subjects, so much so, that each subject purchased a set of VuVa dilators at the conclusion of the study.

Today, sex life with my husband is great. If I use the dilator twenty minutes before we have sex, I can have close to pain free intercourse. During my research, I have found Vulvodynia can disappear or become less painful. I used to feel broken and now I am hopeful and thankful I have a device that allows me to have intercourse with less pain.

 

Words of Advice for Us: Using a magnetic vaginal dilator changed my sex life. My overall message to women in pain: there is hope, there are answers, you do not have to suffer. I’m a perfect example. Keep searching for what helps “You”.

If you wish to contact Tara, you can email her here.  Or you can get more information about Vuva magnetic dilators here: http://www.vuvatech.com/.

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Tara, thank you for sharing your story and for reminding us that we do not have to suffer in silence. It is great to see that you are offering a practical solution that other endowarriors can try. We hope we find a cure soon. Here’s to more happy moments, and to slowly reclaiming what endo has stolen from us.

❤

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!

❤

 

 

#31 Days Of Endo ~ Shadoegirl19

Day 14 🙂

I read an interesting fact the other day, Endometriosis has been found in all organs except the spleen.

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Endometriosis presents itself uniquely in different women, the need to fight this disease is the same across the world. Shadoegirl19 shares her battle with spinal endometriosis.

This story was originally posted on Bloomin’ Uterus. Lisa has graciously allowed me to repost it here.

 

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Shadoegirl19 was just 16 years old when she learned she had Endometriosis.  Now 48 and living in Michigan, she shares her story with us today…and uplifting encouragement.  Not only was she able to have three beautiful children prior to a hysterectomy, but she, unfortunately, was also diagnosed with inoperable Endometriosis of her spine.  However, she remains incredibly strong and supportive.

Shadoegirl19’s Journey:   At the age of 16 I lost my right ovary to Endometriosis. I had suffered from about 13 (the onset of my periods) until the day my ovary basically exploded from all the endometriomas & scarring. The surgeon had never seen anything like it (lucky me).

Back then (1980’s) girls my age didn’t have “female problems”. Every time I had pain prior to the ovary burst they told me & my parents everything from gastric issues to I was looking for attention.

After the true diagnosis I continued to have issues however, I was extremely blessed to be able to give birth to 3 healthy baby girls in between bouts. Throughout the years the problems continued to plague me and I had multiple procedures (ever heard of a Cauldocentisis?? OUCH), surgeries & treatments to try to stem the growth of the disease. I finally made the decision to have a hysterectomy when I was 30. They left my remaining ovary in to save me from having to take HRT or go into menopause so young.

Unfortunately, that only lasted for 2 years before the cysts started again and I had to make the decision to have the ovary removed also. After that, I went on to HRT and live awesomely pain-free for about 12 years until I started to have problems with my hip & sciatica. Of course, I figured it was just my luck to end up with a bad hip after all the years of suffering from abdominal pain. It got really bad after I had a small car accident. Because the pain was so severe (radiating down my leg and causing numbness & weakness all the way to my toes) I had an MRI. When the doctors read it they realized I had a crushed disc and sent me off to a Surgeon. When I went to see him he asked me all the normal questions about my pain and symptoms, did an exam and went to look at the MRI once more.

He then came in and delivered some news I never expected….it wasn’t a crushed disc they were seeing, it was an Endometrial Mass between my spine & my sciatic nerve!! I was absolutely shocked! The worst part was that he advised surgery was not a viable option due to the proximity of the mass to my spine and how badly it was intertwined with the nerve bundle. He said he wouldn’t perform such a risky surgery because the chances of making it worse were far exceeding the chances of making it better.

So, after all these years & procedures, including my complete hysterectomy, the Endo wins again. Now I live with a pain patch and pain pills daily so I can actually walk and have some semblance of a normal life. I refuse to let this damn disease win! I have 3 awesome daughters & 2 beautiful grandchildren to spend time with and I won’t let some pain keep me from being happy! My only fear is that, since 4 of the 5 of them are girls, they will all suffer too. My daughters have each been diagnosed with PCOS and one of them confirmed Endometriosis so far. We knew to watch for it early so we’ve been treating it from early on and, obviously, it hasn’t affected my oldest since she is mom to the 2 grand babies. I pray that someday we can find a cure for this and stop the cycle of pain!

Words of Advice:  Don’t give up!! If you aren’t being heard by your doctor, find a new one! Look for someone who specializes in Endometriosis and get the treatment you deserve. This is a real issue and we shouldn’t be made to suffer for “being a girl”!

If you wish to contact Shadoegirl19, you can email her here.

Thank you for sharing your story, Shadoegirl. I pray that we find a cure soon. Sending you lots of hugs from Kenya. Your story will inspire many to get a diagnosis.

❤