Safari Yangu Na Endometriosis

Jina langu ni Esther Mbugua – Kimemia. Mimi ni mwandishi na mwanzilishi wa Yellow Endo Flower na The Yellow Flower Initiative. Mashirika haya mawili huelimisha na kuwawezesha wanawake, wasichana na wazazi wao juu ya afya ya hedhi.

Kuligunduliwa kwamba nilikuwa na uugua ugonjwa wa Endometriosis nikiwa na miaka 19,hii ni baada ya kuteseka miaka sita kila nilipokuwa katika  vipindi vya kutokwa na hedhi.  Kila ilipofika wakati wa hedhi nilishikwa na maumivu yasiyoelezwa, hakuna daktari aliyeweza kueleza ni nini haswa kilichokuwa cha fanya niwe na maumivu makali. Hadi sasa nimeenda hospitalini kwa upasuaji mara  tatu. Mara  ya kwanza  ilikuwa kuchunguza kibofu cha mkojo wangu, ili wabaini kwa nini nilikuwa nikipata UTI mara kwa mara. Upasuaji wa pili uilikuwa laparoscopy, hapa ndipo waligundua endometriosis ilikuwa imeunganisha tumbo langu kubwa na ovari ya kushoto. Baada ya hapo nilipewa madawa kali ambayo yalinipa dalili za menopause. Upasuaji wa tatu ulikuwa kuondoa viambatisho na kuondoa kipengee changu pia.

Endometriosis ilinipigia ndoto zangu, kuna siku nyingi ambazo nilikuwa nimechoka sana,hata singeweza kuondoka kutoka kitanda changu. Endometriosis ilifurisha tumbo yangu na hewa au gasi nyingi  hadi nguo zangu zengine zilikuwa zinanikaaba sehemu ya tumbo. Maumivu makali pia ilimaanisha singeweza kufanya kazi yeyote. Nilikuwa ninajilaza juu ya sakafu ya tiles ili baridi ya tiles ipunguze maumivu.

Kila nilipokuwa katika vipindi vya hedhi nilikuwa na maumivu makali!  Maumivu ya mgongo, gasi au hewa mingi kwa tumbo, uchovu, kutokwa na damu nyingi nzito wakati wa hedhi, kuvimbiwa na tumbo au constipation kwa kingereaza, maumivu ya kichwa na kuhara.Maumivu  huwa yaweza kupata mwanamke ata kama hayuko katika kipindi chake cha hedhi. Kwa mfano, nilianza na kusikia maumivu tu wakati wa vipindi vyangu vya hedhi, kisha maumivu yakaanza kuja ata nikuwa na ovulate na pia siku chache kabla ya vipindi vya hedhi kuanza.

Nilisikia hadithi za ugomvi kabla ya kujua ukweli, la kwanza ilikuwa kwamba mwanamke akimpata mimba itaponya endometriosis. Kwa kweli kila wakati nilpokwenda kwa hospitali, niliulizwa kwa nini sikuwa na ujauzito. La pili ni kwamba mwanamke aliye na endometriosis aidha ako na mapepo ama amelaaniwa.

Nilikuwa nikibeba madawa mbalimbali za maumivu katika kibeti changu. Wakati maumivu yangekuwa makali sana, basi hapo ilibidii niende hospitali kupewa sindano ya kupunguza maumivu.

Mara ya kwanza,Madaktari walidhani kwamba nilikuwa na hali ya kibofu . Pale kibofu ilipopatikana kwamba haina shida ndipo madaktari waliendelea na matabibu yao hadi kupatikana kwa endometriosis.

Hakuna tiba inayojulikana ya Endometriosis. Upasuaji wa excision ndiyo kiwango cha dhahabu katika kutibu ugonjwa wa endometriosis . Kuna madawa mbalimbali ya homoni yaliyotolewa ili kusaidia kupunguza dalili za endometriosis na kupunguza maumivu. Madawa haya huchukuliwa kulingana na maelezo ya daktari, utumiaji ya haya madawa  hutofautiana kutoka kila siku au  kwa kila wiki au kila mwezi ikiwa sindano.

Wosia wangu kwa wanawake wanao ishi na ugonjwa wa endometriosis ni kuwa mtetezi wako mwenyewe. Anza kusikiliza mwili wako na kuelewa maamuzi na mifumo yake. Usiogope kutafuta maoni ya pili, na soma sana juu ya Endometriosis. Jiunge na kikundi cha msaada. Shirika la Yellow Endo Flower huwa na mkutano wa kundi la msaada mara moja kwa miezi miwili huku Mombasa. Shirika la Endometriosis Foundation of Kenya na Endo Sisters East Africa Foundation pia hutoa msaada kwa wanawake wanaoishi Nairobi na sehemu za bara.

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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 ~ Elsie Wandera

Pain changes you, and sometimes it births within you a desire to be the change that you want to see. That is the story of Elsie Wandera, our third Endo warrior on this seriesSimple Photo Spring Quote Instagram Post

 

 

Elsie is strong, driven, resilient and passionate. After struggling to get a diagnosis, she chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about and to support the women suffering from Endometriosis. She is the founder of the Endometriosis Foundation of Kenya.

She first shared her story with me in 2017.

My name is Elsie Wandera and I am 36yrs old. I am a trained Journalist & recently graduated with a degree in Communication – Advertising major from Daystar University. I have experience in Personal Administration and I’ve worked in a marketing capacity for 2 FMCGs. I am also the founder of Endometriosis Foundation of Kenya focusing on raising awareness and advocacy on Endometriosis. I am also the founder of My Heart Scripted where we run a 10-week experience called Purity & Purpose, that helps women pursue purity and unlock purpose.

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The thing that makes me smile is knowing that I have played my part in making the world a better place and seeing other people smile thus.

 

Where it all begun

I started my periods when I was in primary school. I sincerely thought I was dying, I remember I crying in the shower because I could see this brownish flow but I could not tell where it was coming from. My mom then told me it was okay. I remember I had to buy pads, that was exciting as a girl, I even remember how they smelt then 🙂.

 

Managing the pain

The pain begun when I was in high school around the age of 14 or 15. I remember I experienced such bad pain that I had to be in the clinic during the  days I was on my periods. These were formational years for me and I thought there was something wrong with me. I continued the journey with the knowledge that periods are painful and I dreaded the days.

 

Diagnosis and treatment

I was finally diagnosed with Endometriosis in 2006 through a laparoscopic procedure, the Obs/Gyn simplified it for me by telling me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding, it was by God’s grace that he found it because it was one of the things that contributed to the pain.

 

Upon diagnosis, I was put on a hormonal therapy treatment. This was administered subcutaneously every 28 days below the navel line for 6 months. It had the worst side-effects for me among them: headaches, hot flashes, breast tenderness, nausea & vaginal dryness. Once I completed the dose, the effects of endometriosis which include: chronic pelvic pain, painful bowel movement, painful sex & heavy bleeding became worse. I recall lying in an ER calling my Obs/Gyn and asking him amidst tears why it is back. That was when he revealed that it has no known cure and is recurring in nature. What’s interesting is that he requested me to consider getting pregnant soon (I was 26 then) because one of the effects it contributes to is infertility among women. However, this is not a solution, it is a Band-Aid for 9-months that does not guarantee that the condition will not relapse.

 

At 34, I had to go through another laparoscopic procedure where the they removed another ovarian cyst and the adhesions around my uterus. This was interesting because I did not know that surgeons had specific parts of the body they could cut and others they could not.file

 

Endometriosis has affected many aspects of my life 

 

Physically

The condition caused physical pain and as a result I dreaded my period and yet it is a gift from God that should be enjoyed by every woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation, sometimes I called it “the egg-is-moving day.” I was dependent on pain medication and anticipated pain every month which is not the way any woman should live their life. I also stopped eating as the period approached due to the nausea and difficulty passing long and short calls.

 

Emotionally

It was draining because I had negative thoughts and more importantly, because of the research around the condition and what one doctor told me, I knew I would never conceive. At some point I thought it was God punishing me for a life I’d lived carelessly before.

 

Socially

I was always uncomfortable because I needed to explain myself and why I was going through crippling pain. I was conscious and limited in dressing comfortably because for me it meant sagging clothes because of the physical discomfort during my period and the heavy flow. God forbid I’d stain a seat when the flow opened after a bubble escaped, those were messy days.

 

Professionally

I dreaded having to explain my colleagues and leaders that once every month I’d be disabled and sometimes unable to come to the office. It’s interesting that on those days people would still expect me to deliver my tasks and it would seem like it is not as serious as other physical ailments. But over all I never had an issue especially after I learned what the condition was and that it had a name.

 

I have made changes in my lifestyle

The biggest changes I had to make are around diet and physical exercise because I understood the disease and what it would require of me. I cut down on gluten, wheat, dairy and red meats and increased intake of greens, super foods & supplements to ensure I was enriching my nutritional value. Water intake also is my highest priority because it is a natural cleanser.

 

My current challenges

I think sticking to the diet and relapsing to eating unhealthy foods is the greatest struggle. I’ve learned my body enough to know when I’m craving foods, then I try to compensate with a healthy choice.

 

Learnings from the journey and words of wisdom to other women suffering

I think my greatest learning was understanding that my body is different from another woman and I have to prioritize my health, because no one else will if I neglect it’s cry.

 

We also need support from the world and by telling my story I’ve encouraged another woman to know she is not alone. Therefore, tell your family and friends once you are diagnosed and stop self-medicating and seek professional advise because the body was not built to constantly rely on medication. We also need support from government, employers and medical industry for the sake of all the women in finding a cure and supporting them in every way we can because it takes away our most reproductive years of our lives which we cannot relive.

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Every woman’s pain is valid and if doesn’t matter that you don’t understand it matters that you stand with her as it is not easy to bear.

You can connect with Elsie on Facebook and join The Endometriosis Foundation of Kenya  Facebook group.

Follow her on Instagram and Twitter.

Thank you, Elsie, for sharing your story with us. Your voice matters and your labor is not in vain. Keep blazing!

 

The Kenyan Endo Story: Reshma Maru

It’s difficult to tell the battle a woman is fighting by looking at her. Endo is an invisible force, it is tiny and mighty. It attacks from the inside out, Endo pain is something that all girls would love to live without.

There is a resilience, a fire in her eyes, a desire to win that Reshma has that lets you know that she is determined to beat Endo.

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Reshma Maru is a 27-year-old who works in procurement for a furniture store. She graciously shared her story with us.

What makes me smile is a face of a child-the innocence they show and so pure at heart. If there is something I can smile about, it is fantasizing about how I can hold my own child and just hold them close to me.

 

I started my periods at the tender age of 11. I would hear girls in schools saying that it is like a disease where if one touched a girl who had her periods it would spread, so I kept it hush from friends and even my mother. Being the only girl brought up in an Indian family I didn’t have someone to confide in, the day that my mother found the bed sheets stained she was furious that I did not tell her I had started my periods. In the Indian culture it is important to tell your mother so that she can explain to you that when you are on your periods you do not go to the temple or touch someone who is going. So many myths came together with this.

 

I went through years of painful periods that would last 7-8 days. Panadol was my best friend and without it I would not last any of the days, I just knew that ahhh its periods they are always supposed to be painful, so it is normal.

 

The pain got worse when I was 24 years old. I would have the normal painful period but the pain would continue even after the periods were over. So two weeks down the line I was like ‘This cannot be period pain, it must be something I have eaten.’ I went to a general doctor and explained all my symptoms to him, and he said that it sounds like amoeba. He took a stool sample and said that he found traces of amoeba and that was a sigh of relief as I knew there are medicines to get rid of them. I was on medication and a few days after ovulation I was pain free.

 

The next month came and I got painful periods and the same pain after the periods. This time I ignored it and took antibiotics for two weeks and voila I was back to normal. I just thought to myself that since the previous periods were painful I may have a less painful one next month. Come next month the pain was worse. I would get hot flashes, nausea, lack of appetite, and pain all over my abdomen especially my left side.

 

Since I had a medical cover at work I decided to go see a gyno and just get things checked out as it may be a small issue and besides since I wasn’t for it why not. I got advise from fellow workmates on which gyno to go see since they were using the same. The gyno advised I do a blood test and a scan so that she could have a clear view of what was causing the pain. When she saw the scan report she looked at me and said you have been diagnosed with Endometriosis. At first I was like ‘Huh? that is a long name to even pronounce let alone spell.’

 

I took the prescribed medication and decided to google the sickness she had talked about. After the research, I concluded that it was a common disease so may be the Vissane that she had prescribed would cure it as the box read specially for Endometriosis. I took it for 6 months as I went for regular checks with the gyno and I was really really happy. Vissane suppresses your periods, so no periods = no pain for me.

 

I was three months away from my wedding and pleaded to the gyno for me to continue the medication until my wedding and honey moon were over. She agreed and said that I should get a baby and all these problems should disappear. I was happy that I was pain free, able to work, plan my wedding, run around here and there.

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I actually ditched the contraceptives when I started gaining weight and getting very emotional almost every day. I started going to the gym to lose weight but after 3 sessions max and I could hardly keep up. I was always tired, my feet always hurt, my shoulders felt like someone was sitting on them, I would cry for no reason over the tinniest things. My husband would be like, ‘What is the matter be strong,’ and I would just look at him and just cry and cry.

 

This time time when my periods came, the pain killers did not work at all. I could feel the pain like I was being stabbed on my left side but nothing was working. I even went to work in all that pain just waiting for the painkiller to kick in and may be get distracted from the pain while working but nothing worked. I rushed to my gyno and pleaded she does something about the pain. She injected me with stronger painkillers but nothing changed. All helpless I now asked her, “Please just tell me anything else we can do because I don’t think I will last a day like this.” If I saw a knife that day I would have stabbed myself just to remove whatever it was causing the pain as I knew exactly where it was.

 

She advised that I be admitted right away for a Laparoscopic surgery. Without knowing the details I was ready to go through it just to pass through this hell. In the evening as I was prepping myself for surgery, I started thinking ‘What is this I have agreed to do?’ but I prayed all will be well and went for it. A surgery that was to take 2 hours ended up taking 4 hours. I came out of surgery with a numb tummy and no pain I was like ‘Wow! I like this feeling.’

 

The pain started after I was out of hospital, I was constipated, healing from the surgery itself, dealing with a dry throat caused by the tube they insert down your throat during the surgery, extremely emotional and hating on those who didn’t come see me in hospital including a Best friend who I decided to let go of. I went back to the gyno for my report and to ask why the surgery took so long and she explained that I had a normal cyst and inside that there was now an endo cyst growing both being 5.5cm. These were on the left ovary therefore causing the excoriating pain. They were removed but since they were on my ovary the top tissues were removed as well so healing would take some time.

 

Post-surgery, I am still struggling to join this diet plan that endo patients are asked to follow but my work mates give me support and also join me in eating right. I do not want to lose a job or give up on life because of this. Believe me it is so hard, I lived for food and now I get told do not eat this or that. You think like where do I start looking for organic food and even when you do find some you are too weak to cook it for yourself.

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But believe me nothing is worth your health. The bills that you get with medication and surgery are more expensive than just eating right and taking care of yourself. I am now hearing of foods or herbal meds and I’m willing to give them a try.

 

This has really changed me in many ways – I am closer to God more than ever, thinking of him everyday – I am more positive and really willing to help someone else through this because NOTHING is possible without the support. When you are left alone your get negative thoughts play in. Even just listening to someone vent is good enough for me because we all at one point want to do that.

 

I always want to help and be there for anyone going through this as no one understands your pain like a fellow endo-sister. I believe this will be a thing of the past but this can only happen if we create awareness and research on what works or doesn’t work for each other.

 

What I always keep in mind that God gives the toughest battles to those he loves the most. Let’s not give up and always be there for someone whenever you can because time is short, let’s not run out of it!

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courtesy yesofcorza.com

My favorite flower is a black rose as it is unique and rare to find just like you!!

You can connect with Reshma on:

Facebook – www.facebook.com/reshma.maru

Instagram –https://www.instagram.com/drop.dead_diva/

Are you an Endowarrior living in Kenya?

Would you be interested in joining a community of women who support each other in this journey?

Do you suspect that you could have Endometriosis and are wondering where to start?

If you answered yes, please leave me a comment or send me an email via yellowendoflower@gmail.com and I will be in touch.

Despite the adversity and circumstances that surround us, we will still bloom and dazzle the world with our presence and beauty.

We are flowers; delicate, resilient and strong.

Misunderstood

‘Who hurt you?’ I asked aloud, referring to my uterus. I was tired of her tantrums. She behaved like an old bitter woman, who was trying to hurt me and cramp my style. Her negative attitude was like a pregnant dark cloud in my bright blue sky. My positive attitude was like the blaring sunshine before it rains. The proverbial ‘Hii jua ni ya mvua.’

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The mention of Eve’s name would make me cringe. I blamed her for my uterus’ monthly anger. Why did she have to listen to the serpent? Of all the trees in the garden, she chose the one that was forbidden. Curiosity killed the cat. Curiosity also harmed Eve and her descendants.

One day I woke up and called my uterus to a meeting. That morning, I blasted some worship music, wore the prettiest top I owned,  sprayed some nice smelling perfume, and read up on how to deal with a hurting individual. Then I prayed and I set out, well, more like set in, to have the discussion of the day.

I had decided that nobody, or uterus for that matter, was going to dull my sunshine.

“Hi Missy! ” I said in a high pitched voice.

“Hmmm!” she grunted

“First, I’d like to say sorry about all the mean things that I’ve said about you. I didn’t meant to make you upset.”

“Go on, I’m listening.” She responded. My sandwich approach seemed to be working. I was apologizing before stating my case.

“I’d like to call a truce. Help me to help you to help me.” I said, almost pleading.

“Y’know, you sound like a really nice person, when you are not talking badly about me. I think that I can help you, I’d like to give it a shot.” Uterus said as the smirk on her face turned into a gentle smile.

The voices in my head shouted “Hallelujah!”. I was excited that I was making some progress, but I needed her to tell me exactly how we could work together.

“What can I do to make your living conditions a bit better?” I asked.

“Thanks for asking.  This is going to be a long response, you better get a pen and a paper.” I quickly removed my notebook and pen, and put my phone on ringer. Nothing was going to disrupt my peace negotiation.

“What makes me most upset, Ess, is when you eat all that oily food, dairy and wheat and your stomach bloats all up in my business. It’s difficult to breathe with your intestines in my face. How would you feel if you had balloons constantly poking at your face? Huh?  Bananas make me happy, They relax my muscles, I’d like more of those. It wouldn’t hurt, if you’d drink some more water. Chill out on the alcohol and coffee.” Missy said then paused to catch her breath.

“Ess, Heat is bae. Snuggle up with hot water bottle, I’m cold. I want some love. Have a cuppa and warm me on the inside. I know you want to lie all day, but I need you to keep moving. Give me some endorphins. Boost your levels of fish oils and magnesium, those help me feel less cranky. Finally, if I cause you too much pain, please remember that it is not personal. Contrary to popular belief, I don’t enjoy losing a part of myself every month. If you are in a lot of pain, please pop a painkiller. If it feels as though I am screaming each month, or cutting you from the inside, do us both a favor and see a doctor. Lord knows we need all the help that we can get.”

“Oh Uterus, you had a lot on your chest. Thanks you sharing your thoughts and the tips. I will definitely take them into consideration. I want us to live in peace. I’m sorry you’ve been hurting so much all this time. Honestly, I thought you were just a grumpy old lady. But, it turns out that you are pretty cool. Let’s hug and make up.” I said as I stretched out my hands to embrace my fiend turned friend.

“Ess, I’d love to hug you but your intestines are all up in my space.”

“Oh! I’m sorry about that. I’ll work on the bloating. Now, let me eat a banana and make you happy.”

It turns out, I’d gotten it all wrong, Miss Uterus is not a bitter old woman, she’s just misunderstood.

 

 

10 Tips On How To Support A Girl Who Has Painful Periods

Hospitality is not for the fainthearted. It takes a special amount of grace to host someone. It’s easy when the boundary lines are in bold and everyone knows whats theirs. When the lines get blurry, the waters become cloudy.

For some, hospitality comes naturally. Once you hit puberty, as a woman, your body informs you that you need to host a visitor every month, Aunty Flo, whether you feel like it or not. What it doesn’t tell you however, is that the said visitor may come and take over your reproductive system life. She may move things around like she owns the place. She may get comfortable, make food orders in the name of cravings, make your uterus upset that results in pain; her presence may leave you in a bad mood.

It will be uncomfortable but you’ll learn to live with her. When she becomes a pain, you give her a different nickname that includes the length of her visit: ‘Shark Week’. Sometimes she comes with so much force, and baggage to boot. She makes life miserable. In those moments of invisible pain, it’s difficult to see the silver lining.

As a mum or guardian, it is heart wrenching to watch your little girl crumble in pain every month during her period. As much as you want her to believe that she can do anything that she sets her mind to, some days, all she can do is stay in bed, curl herself into a ball and cry.

Wanting to help but not knowing how to, can be equally frustrating. I saw this frustration in my mum’s eyes as a teenager. I look at my little girls and pray that they will never know Endo pain. If one of them tells me that she has painful periods, I will follow the advice that I wish I could have given my mum years ago.

10 Ways To Help A Girl With Painful Periods

1) Believe her 

Invisible pain is hard to actualize. Many women are made to feel like it is all in their heads, but the pain is real. Believe her even if she doesn’t ‘look’ like she is in pain. Nausea and vomiting do not have to be present to show pain.

2) Listen to the whispers

Pain is the body’s way of saying that something is not right. Listen to the whispers, so that the pain doesn’t have to paralyze her to get your attention. When she complains about the pain listen out for the other symptoms that accompany the pain.

3) Avoid self-medicating

See the doctor when she is experiencing the pain. Minimize the number of over-the-counter meds taken. If the body is no longer responding to a certain medication, note it down and bring it up with your doctor. Read up on the painkillers that she takes – the side effects and contraindications.

4) Keep a diary

Encourage her to keep a diary of how she feels during different times of her cycle. The key things to note are:

  • When the period begins
  • How long it lasts
  • When it hurts most
  • Other symptoms experienced during the period and during ovulation

5) Family History

Research about the women in her lineage who had pain accompanying their periods. Write down what were they diagnosis was and the treatment that they received.

6) Concerns and Questions

List down your concerns and questions, so that you can remember to ask the doctor. Carry medical records that may be helpful.

7) Love

Love on her in the way that you know best. Encourage her to keep a positive attitude. Keep a bucket list with her of things that she would  like to do once the pain passes.

8) Watch her diet

Hormonal imbalance is one of the causes of pain during periods. Eating a raw carrot a day has been shown to reduce the pain during periods (it reduces the estrogen levels). Minimize intake of dairy and wheat. Meat and processed foods can also be a trigger. But the thing to do is to isolate the trigger, she can do this is by keeping a diary and noting down changes.

9) Psychosocial Support

If the pain during periods affects her psychologically, or her esteem, find someone that she can talk to. Encourage her to still hang out with her peers.

10) Research

Do research online before you agree to a course of treatment. Ask questions and read reviews of different drugs.

Bonus point: Pray

For grace to hold her hand during this season. For wisdom to guide her and to know where to go. For favor with the doctors that you consult. And, for healing.

Painful periods are not normal.

 

 

5 Ways You Can Support An EndoWarrior

Endometriosis affects 1 in 10 women. This means, if you know 10 women, you know Endometriosis.

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The fact that it’s an invisible disease makes it difficult for women to get diagnosis and for people to relate with her and the pain. Because of the nature of the disease, and the societal norms, women find it hard to speak about Endo and even reach out for help.

It is more than just a woman’s disease, it affects the society as a whole. Women, daughters and sisters are affected. Fathers, husbands and brothers too.

5 Ways Tolove on an ENDOWARRIOR

Here are a few ways that you can support a woman who has Endometriosis:

  1. Believe Her

When she says that she is in pain, believe her. When she struggles to get out of bed, believe her. When she is too inflamed and bloated to fit in her normal clothes, and takes very long to get ready, believe her. When she says sex hurts too much, believe her. When she says she’d love to meet up but she just can’t, believe her. When she says she is on the verge of giving up hope, believe her.

Believe her. Believe her. Believe her.

The best form of love and understanding stems from a place of believing without a shadow of doubt that she is in pain and not pretending.

This understanding will help you be sensitive when you ask her questions and comment on her daily struggle.

2. Listen to Her

Hear her out, don’t dismiss her pain. Listen to her dreams, her fears, her jokes and her heart. Listen to her words and also to her actions; gently encourage her when she sinks into the valley of sadness.

3. Do Your Research

Take a personal interest in the condition and seek to be knowledgeable. There is a lot of valuable information on the internet. Read up about Endo, go onto forums and ask questions. Read the leaflets that come with the medicine that she is on. Research on

4. Be Present

Let her know that you are in this together. Go for the consultations together. Take an interest in her daily routine, encourage her to do things that help her. If she goes on the Endo diet, help her plan her meals. Join her in some of the meals.

5. Love her as she is

Don’t try to change her to be the woman you remember her being or the woman of your dreams. Love her as she is. Accept the challenges that she faces and help her work around them. Speak words of life and love.

Your support means a lot.

Blessings,

Ess

The Diary Of A Kenyan Endo Warrior: Period Shaming

 

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Dear Diary,

My heart is heavy. Thinking about my periods as a teenager has brought tears to my eyes. When my periods became painful I heard all manner of comments from other women about how I should suck it up and put my brave face on. “No one needs to know you are on your period. Every woman has a period, you are not the first to have one and you surely won’t be the last”. These are words I heard so many times, and each time they pierced my heart.

I learned to put my brave face on and suck it up. Sometimes the pain was so severe that I couldn’t sit in class. The school nurse was not of much help. She quickly drew an image of the female reproductive system, explained that periods were normal and so was the pain, as she gave me two paracetamols.

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I remember those pills were so hard to swallow, I always said a prayer as I swallowed them. Sometimes she wouldn’t let me rest, because I’d become a ‘repeat offender’, a regular in her office every month. Yet, I never prayed for a painful period. After all, who likes to be sick anyway? I dislike being sick. I felt guilty for being sick, ashamed to be a woman. Sad that I was ‘that’ girl, the one with the problematic period.

Every woman gets periods but not every woman has Endometriosis. Just because your period is painless, doesn’t negate another woman’s painful experience.

Over the years, I grew tired of pretending to be okay when my uterus was collaborating with other organs to kill me slowly. I wore a brave face, while all along, I was dying slowly.

The thing that I wish all women knew is:  Just because your period is painless, doesn’t negate another woman’s painful experience. We need to stop period shaming, and talk about periods openly.

Painful. Periods. Are. Not. Normal!

Love always,

Ess