Let’s Talk About Periods

I had a beautiful period last month.

It was a nice shade of red, bright, alive, a good summary that my hormone levels are getting better. It was a shade that I never saw in my teenage years. It made me happy, reminded me of how jolly my little one gets when she sees Elmo. Speaking of Sesame Street, a friend told me that she calls her period ‘Elmo’ and that my friends, is how I have closed the Furchester hotel in my mind.

It flowed like a stream, which is a relief since my period has always felt like the ocean on a bad day, like trying to kayak on choppy waters in a raging storm. I told hubby how good it looked, let’s just say that was not what he was expecting me to say. I have talked about periods for a long time, but this was a different narrative.

I love talking about periods. It is one of the topics I could give a talk on without prior preparation. Talking about periods is important. If I knew that my period should be bright red and runny as a teenage girl, I would probably have gone to a hospital sooner. Instead, I suffered in shame. I was horrified by the size of the clots, and the dark purple color was really nothing to write home about.

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We need to talk about periods openly and regularly. Too many girls and women are suffering in silence. So many dreams are unrealized because of menstrual health-related conditions and lack of supplies.

Monday 28th May is MH day 2018, the theme this year is #NoMoreLimits. If you are in Mombasa and you would like to meet up and have a conversation about menstrual health, please drop me a line via yellowendoflower@gmail.com

Please speak up, share your story, initiate a menstrual health and hygiene conversation with women and girls around you. Let them know that being born with a uterus should not be a disadvantage. We can all achieve our dreams.

#NoMoreLimits

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Endometriosis and Mental Health

One of the areas that Endometriosis affects women in a great way is in mental health. Endo warriors fight many psychological battles. These have to do with living with chronic pain and reduced effectiveness, infertility, miscarriages, missed opportunities especially career wise, relationship issues sometimes leading to divorce, body image concerns such as weight gain or scarring from numerous surgeries, mood problems caused by hormones gone berserk or by some of the treatments we get to manage the condition. The list is endless.

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Endo Warriors find that these issues sometimes leave them in a dilemma regarding their identity. Wondering “who am I?” A mum in waiting? The sickly one? The divorcee? The fat one?

Generally, people tend to answer the identity question – who am I – with roles we play such as: I am a wife/ mother of two/ nurse/ divorcee/ the clown in the family. But is that really who we are? The problem with these descriptions is that they are all determined externally and could change any moment. The wife can become widowed or divorced, while the divorcee can get remarried. This is bound to create an identity crisis every time there is a change. Secondly, these roles come with society’s perception and expectation of how they should be played. This can also create disillusionment when we try to do things differently from the norm and the society rejects it. For example, in many of our African societies remarriage of a woman is still frowned upon even following the death of her husband.

So, what if we looked at our identity from a more intrinsic perspective? That instead of waiting for society to tell us who we are, we look inward and see what we are made of – those things that we have control over. Identify ourselves by such things as our values, our thoughts and beliefs, our likes and dislikes. For example, even though the society may mount undue pressure on an Endo Warrior married for a number of years but still trusting God for her miracle baby, she can still walk with her head held up high telling herself that her value as a person is not dependent on being a biological parent.

To achieve this level of self-awareness and confidence, our beliefs play a big role. Our thoughts and beliefs are the lenses through which we interpret the world They affect how we feel and act. Negative thought patterns will certainly make us feel sad, depressed, frustrated, overwhelmed and are likely to make us act irrationally. Some Endo Warriors end up giving in to negative thought patterns and end up feeling overwhelmed while others in the same boat rise above the struggles and end up excelling in their spaces of influence.

One healthy habit that Endo Warriors need to cultivate is guarding their thoughts. This needs to be a daily intentional action. Eventually this forms a habit and it becomes more natural to think rationally. Some of the ways to achieve this is through:

  1. Scheduling some down time – Incorporate quiet time as part of daily routine. Even better if this period includes spiritual nourishment like some uplifting worship music.
  2. Differentiate between what you have control over and what you do not – change whatever needs to be changed and quit worrying about what is not in your power to do so.
  3. Be kind to yourself – Acknowledge the struggles and respect the limitations that come with endo. Remember you never wished this on yourself – you just happen to be one of 176 million strong soldiers worldwide on this assignment.
  4. Self-Awareness – Begin to be aware of when your thoughts start to spiral down the abyss, then stop them. One trick of stopping these thought is to have a rubber band around the wrist. Each time you find yourself thinking negative thoughts, snap the rubber band and the slight pain usually jolts one to the present moment and away from the unhelpful thoughts. Try it!

Faith Osiro first shared this with Endo warriors at the March 2018 Endometriosisis Foundation of Kenya Endomarch event. She is a counsellor based in Nairobi. If you would like to get in touch with her, please reach her on 0737 861671.

The Endo Blues ~ Battling With Depression

I thought I was losing my mind. Instead of feeling better after the laparoscopic surgery I was feeling worse. Granted there was no pain in my abdomen, but I felt like a sedated prisoner in my own body. I desperately wanted to fight, but I was often too tired or sleepy and disinterested.

Getting out of bed was difficult, leaving the house felt impossible. I remember I would cut two pieces of paper, write ‘Yes’ on one of them and ‘No’ on the other and then pick one with my eyes closed. As I picked, I prayed that I would pick a ‘No’ so that I wouldn’t have to leave the house. Sometimes the voice inside overrode the ‘Yes’ I had picked and I would stay at home.

I was depressed, and I had no idea.

The hormonal treatment to treat Endo combined with Endo had hurled me into a dark corner, burdened my shoulders and I was forced to surrender. There was no happiness. There was no joy. Laughter was a mystery. I dragged my feet as I walked, and wondered why the nights were so short. I slept but never felt energized, and desperately wished that this aspect could manifest itself physically.

My doctor was only looking out for the physical implications of the disease. Not once did he ever ask how I was doing, psychologically and emotionally. Perhaps it wasn’t his place, but he could have brought someone to the table to shed some light on that aspect.

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I was nineteen and lost at the big blue sea. I was drowning on dry land. I was fighting phsycially and paddling to stay alive. I hated it. I cried bitter tears, if we wrung my pillow we’d fill a bucket or two.

I felt alone.

I was told to pray, and I prayed. The blues, well, they remained, the dark shades made way for the lighter hues. And as time went by, I begun to see the sun in my sky. I begun to feel the warmth of it’s rays on my skin. I knew that I would be okay.

My heart goes out to Endo warriors who are grappling with this darkness. You are not alone. You do not have to walk alone. If you would like to talk to a professional please call Faith on 0737861671. She has graciously agreed to help Endo warriors navigate these choppy waters at a discounted rate.

You can reach me via yellowendoflower@gmail.com

You are not alone.

 

Hemorrhoids. Be. Gone – 8 Home Remedies for Hemorrhoids

Hemorrhoids. The pain in the butt that no one ever wants to have.

Courtesy of Endo, I was acquainted with hemorrhoids at a tender age. I didn’t know what it was, but it seemed like the lesser evil compared to being backed up, thanks to chronic constipation. The bowel issues began before I was 10, and by the time I started my periods, Things Were Bad! During my periods, I would battle, cramps, heavy flow, and bleeding hemorrhoids. Just thinking about the pain gives me chills. Some months I wasn’t quite sure where the bleeding was coming from. It was a messy affair.

Over the years, things have gotten better. Here are some home remedies that I have tried and have worked:

1. Hydrate

Drink enough water, at least 6-8 glasses of water a day. The liquid will help to soften the stool.

2. Eat more fiber

Eat fiber-rich foods such as fruits, whole grains, and vegetables. The fiber will help to soften the stool. Reduce the intake of foods that trigger and worsen constipation.

3. Don’t push too hard

Avoid bearing down excessively when passing stool. It may put too much pressure on your veins.

4. Don’t postpone the urge to go

When you feel like using the bathroom, use the bathroom. The longer you wait, the stool will become dehydrated.

5. Don’t sit too long

Avoid spending to much time perched on the toilet seat. Reading on the toilet may cause more harm than good by straining your veins.

6. Keep the anus clean and dry

Avoid using things that can irritate the skin such as soap and wipes with alcohol. Wash the anus with water and pat dry. Wear loose, breathable materials.

7. Get moving

Adapt exercise into your lifestyle, it can help to ease the pressure on the veins. Also, losing excessive weight may take some pressure off the veins.

8. Use a step stool

Place a step stool infront of the toilet and step on it as you sit. Elevating your legs into a squat like position may help you pass stool with some ease.

There are topical creams available over-the-counter. However, if the pain, discomfort, and bleeding persists, please see a doctor.

Here’s to hemorrhoid and constipation free days.

 

 

 

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 ~ EMS

Day 17 🙂

“If you know it in your bones that you don’t feel right, fight for yourself!  Get the answers you need, because you owe it to yourself.” EMS

Endometriosis has the ability to manifest differently in women. It is mostly associated with painful periods but sometimes it surprises us, and manifests itself differently.

 

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EMS shared her story with Lisa of  Bloomin’ Uterus early last year, after experiencing seizures during her monthly period.

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EMS lives in New Zealand and was diagnosed with Endometriosis this year – at age 34.  This year she exhibited signs of a stroke, dizziness, trouble breathing, all around her period – she fought for a proper diagnosis and had to fight hard.  Stage IV Endometriosis.  Not stress. Not anxiety. Not a stroke…Endo.

EMS’s Journey: Wow…. okay so in February this year I was having excruciating pelvic pain. Doctors in the ER thought it was gallstones so they treated me as such. Upon them trying to flush the gallstones with meds, my body reacted and we now know it was Endo that I have. My brain slowed down and all of a sudden I couldn’t think to form a sentence, then my eyesight went blurry, then I started seeing double and the room was moving. Then my limbs shut down and I couldn’t move at all and I developed a shocking stutter out of nowhere. The stutter lasted close to two weeks. One incredible doctor got me up and moving again but only incredibly slowly, but it was enough for me to get myself the rest of the way. After many doctors came to see me to work out what was wrong, I had a CT scan at which time they were looking for evidence of a stroke and didn’t find any of such evidence. They didn’t tell me anything, they just told my partner that they didn’t find any sign of a stroke.

When we look back on things, we know that I was day 2 into my monthly cycle at this time. I was diagnosed as having ‘my brain go on holiday’. I kid you not, that was the diagnoses I was given. That particular doctor said that once I rid my life of whatever was causing my stress, I would come right. Of course, I didn’t come right.

Then come April, I had my very first seizure. Full blown seizure. I struggled to breath. I remember gulping for breath. I was taken to the ER. The doctor there said that it must be stress. She couldn’t put it down to anything else. I asked for a CT or MRI, I was very angry and said I’d never had a seizure before in my life and demanded that she get to the bottom of it. She said that as I’d had a CT before and it was unremarkable there was no point sending me for another one. So she discharged me.

I went home and the very next day I had a seizure again, again gulping for breath. Back to the ER. This time I had a doctor who was more intent on getting to the bottom of it and he sent me to neurosurgery. A team there monitored me for a number of days but decided that I had extreme anxiety and that I was in denial. I tried so hard to say that that wasn’t me. They put me on antidepressants and made me see a therapist. So I saw a therapist for weeks and she said after my very first visit that she could not detect any anxiety and she worked with me to get my GP to arrange for me to have an EEG. The antidepressants also ironically made me very depressed and I demanded that I come off them. The EEG showed definite signs of seizures and I seized in front of the neurosurgeon there, but there were no signs whatsoever of epilepsy. My doctor put me on seizure meds which helped for a long time until I asked to come off them. They were only masking the effects of everything.

Not long after I came off them everything got a whole lot worse. We didn’t think it could get any worse. My brilliant partner asked to have me checked for my female parts as he had noticed that things only went haywire at that time of the month. Sure enough, I was diagnosed with Stage Four Endo. Now I have a Zoladex implant, but the seizures are still active. I am currently waiting to see a consultant.

I have done huge amounts of reading to try and find a link between the Endo and the seizures. I’m not a medical person of any sort and no medical person yet has been able to confirm any of this, but from what I have read, in very rare cases the Endo can get into a person’s central nervous system. I had two rounds of spinal surgery 5 years ago and had rods put either side of my spine and screws put into my spine and then removed during the second round. I have to wonder if that has something to do with it all. If the Endo has maybe attached itself to my spinal cord. I intend to ask the consultant this when I see him. I just hope that’s not too far away.

So for now, I have seizures every month. And its scary as hell, but today, for the very first time, I have found some relief in finding Bloomin’ Uterus and others who have this also and who are also looking for answers. xo Thank goodness for you all!!

Words of Advice for Us:  If you know it in your bones that you don’t feel right, fight for yourself!  Get the answers you need, because you owe it to yourself.

The Last Word:  Know that there are others out there, sometimes we spend hours searching, days, months searching, but we can find others who know. Today, I found this blog and I swear it is like a Christmas present to me to have found it. Now I’ve found others who also have seizures.

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

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Thank you, EMS for sharing your story! You are a warrior. You have spurred us on, we are encouraged to never stop seeking for answers when we feel that something is wrong. We pray a cure is found soon and the journey gets easier.

 

 

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!