Invitation To Partner

I could talk about periods all day long. What used to make me cringe and uncomfortable is now what make I have chosen to spend this season of my life talking about and training on.

I trained a group of ladies from Moi University a few days ago, and I loved it! There are way too many assumptions about menstrual health. The stigma surrounding menstrual health means that the lies have become truths, and there is no avenue to ask questions or to seek clarifications.

In some communities, girls are having sex soon after their menarche because the boys believe that sexual intercourse can cure cramps. Parents, religious insitutions and schools’s voices are faint compared to the uproar of their peers.

Sex is not a cure for for menstrual cramps. Pregnancy may provide temporary relief, but I believe that teenage pregnancy should not be a band-aid for underlying problems. Pregnancy and motherhood may come with other challenges.reach out and give someone a great big hug!.png

There is a great need out there. To some, this may just seem like just another period campaign, but it is more than just a period talk. It is the demolishing of myths, it is teaching of life-changing truths, it is the restoration of dreams and hopes, it is unveiling the – often-marred- beauty of being a woman. It is showing another side of the rose, while hoping to take away the memories of the prick of the thorn.

There are several opportunities that are coming up to train, inspire and mentor girls, and the truth is that I cannot do it alone.

If you would like to get to know more about the training sessions and how you can help to change a girl’s life, please send me an email via yellowendoflower@gmail.com.

 

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#31 Days of Endo ~ Sarah

Day 15 🙂

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

#TheKenyanEndoStory: Elsie Wandera

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The second Kenyan Endo warrior sharing her story with us is Elsie Wandera. Hers is a story of pain, hope and sisterhood. After struggling to get a diagnosis, she vowed to help other women know that they do not have to suffer in silence, and they do not have to walk alone. She is the founder of the Endometriosis Foundation of Kenya.

 

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 and I remember I was in the shower crying because I could see this brownish flow that I could not tell where it was coming from. My mom then told me it was okay and I remember I had to buy pads and 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 also know that these were formational years for me because 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 and the only way to simplify it for me the Obs/Gyn told me that my uterus was growing inside out. He found a chocolate ovarian cyst that was bleeding and 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 infertility among women. However, this is not a solution but 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 

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 any woman. I had difficulty going for long calls and it was the worst feeling – worse than constipation. I also had very painful ovulation and I know sometimes I called it “the egg-is-moving day.” I was also 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…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 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 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.

 

Endo changed  my life

I believe out of the pain this journey my life changed and I chose to speak up about this condition which many women suffer in silence because most think it’s shameful to speak about.

 

Also leading the movement reminds me that I’ve got followers who desire to be resorted as I was and therefore it is ensuring that they have a reference point and encouragement as they journey.

 

Finally, to the world:

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.

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I love carnations 🙂

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. You are a star!! ❤

If you would like to be featured in #TheKenyanEndoStory, please send an email to yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

The Conversation Needs To Go On

Gone are the days when parents could wait for the eve of their child’s 12th birthday to broach the subject of adolescents and sex. Children are maturing much earlier now, also, they are exposed to a lot of informative content from a tender age. Their attitudes and thought patterns are formed long before they hit teenage.

The truth is that we live in a highly sexualized world.

Just because you are not talking about it doesn’t mean that your child is not listening.

The world is filled with opinions and children are wired to learn, from whoever is teaching.

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You can’t wake up the eve of your child’s 12th birthday and decide to be an authority on a matter they have heard about over the years from everyone except you. Unlearning is harder than being taught.

The seemingly uncomfortable subjects need to be discussed . Children can sense discomfort and shame. We as parents have to be careful not to pass on baggage to our children. If a certain topic makes you uncomfortable, perhaps you need to look within and see what exactly makes about it makes you feel uncomfortable and deal with it.

A truth zone

In my first post, I wrote about how I was told pads were called ‘mkate’ (bread). Honestly, it was such an unnecessary lie, but it stuck in my memory.

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It made me decide that my home will be a truth zone. There are enough lies being told out there, for me to come and add on to. My children need to know that I can be trusted to tell them the truth.

Can your child trust you to be honest with them?

When I say honest, I don’t mean spill all the beans, but tell them enough to satisfy their curiosity. Tell them the age appropriate truth.

Listen when they speak

It is important to listen to your children when they speak. Ask questions about both the small and grande things about their lives and listen. Turn down the noise, put away the gadgets and listen. Find out what makes them happy, their current interests and opinions. It’s easier to identify behaviour out of the norm when you know what the norm is.

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The conversation needs to go on. It starts now. Honesty starts now. Cultivating a relationship with your child that allows you to teach them the truth and life skills starts now.

We can sit back and blame the rotten society for our children’s beliefs or we can stand up and speak the truth.

You are an authority. Take your position and speak boldly.

Blessings,

Ess

 

When Sex Hurts #TheKenyanEndoStory

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Sex is supposed to be synonymous with pleasure. Sometimes, it is not, and pain takes the place of pleasure. Over time, it is possible for this to strain a marriage. One of the symptoms of Endometriosis is pain during or after sex.

Pain during sex is seldom talked about and many women and marriages are suffering in silence. In honor of Endometriosis Awareness Month earlier this year, I asked Maggie Gitu, a Marriage and Family Therapist and Sex therapist to expound on what to do when sex hurts because of endometriosis or adenomyosis.

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Sex is one of the most important and fun ways for married couples to connect. Painful sex, however, is no one’s idea of a good time. Painful sexual intercouse, also known as dyspareunia, is the persistent pain that occurs during or after sexual intercourse. Dyspareunia can occur as a result of a variety of issues such as insufficient lubrication, trauma, surgery or physical conditions such as vaginismus, endometriosis or adenomyosis. Endometriosis is caused when tissue that lines the uterus grows outside of the uterus, while adenomyosis happens when uterine tissue grown into the uterine wall. Both of these conditions can interfere with sexual intercourse.

While the presence of endometriosis or adenomyosis can interfere with a couple’s sexual pleasure, there is no need for sexual intimacy to cease altogether. So what’s a couple to do?

Communicate:

It may sound cliché but it’s absolutely true. It’s important for a couple to communicate openly and honestly about what is happening in their marital bed. Even going for doctor visits together would be helpful in allowing male partners to hear the information directly from a qualified medical professional, which may increase their understanding and empathy for their female partners.

It is also important to allow room in the marriage for honesty: room to speak honestly about the challenges of having to deal with a condition, irritation at having to avoid certain sexual positions that you would want to try but can’t because of the pain to the partner, the guilt or shame that is common with partners who feel like they are being denied the sexual adventures they imagined they would have. Remember that these feelings are about the situation, not the person. The bottom line is that openness and honesty will be crucial if a couple is to enjoy their sex life.

Lose It:

Lose the guilt, because none of this is your fault, and even when/where you could have done better, now you can because now you know better. Lose the blame; again, this serves no purpose in enhancing the intimacy in your marriage. Accept that this is the situation that you’re in, find a competent doctor to work with you and move forward determined to enjoy your sex life together, inspite of a diagnosis of endometriosis/adenomyosis. Lose the bad attitude; it’s going to destroy your sex life, which will in turn negatively impact other aspects of your marriage. Lose anything and everything that will interfere with your ability to connect as a couple. If you need more support, more information, or additional medical intervention, all you ever have to do is ask, so ask! Your doctor will advise you on all the options that are available. Lose the pressure to be perfect; sex is about connection, intimacy and fun not an Olympic performance with a score board. Relax into it; remember that you are not alone, and there is help and support to be found for those who take the time to seek. 

Attitude:

When it comes to sex, attitude is everything. Even without the added challenges of endometriosis or adenomyosis, the attitude a couple has about the kind of sex they want to have really does make all the difference. Instead of seeing these conditions in a strictly negative light, try to challenge yourselves on all the positive things that can come out of this, for example, the sexual positions that you hadn’t even thought to try might be exactly what you need in order to have sex life that you want.

Experiment and Have Fun:

Sex should be fun, so make it fun and experiment. As a couple, be open to different sexual positions, for example, while the missionary position may be painful for some women, it may be easier for you but you’ll never know unless you try. In addition, begin to figure out what sequences work best and which ones are best left alone e.g. some women find it easier to begin with one sexual position and then move on to other positions while some find that maintaining a single position is easiest on them. The point is, experiment! Make a game of it by coming up with a funny ranking system that you can both look forward to contributing to; be sure to add an exciting reward system 😉

Part of experimentation is understanding that sexual intercourse is not the only way to enjoy sexual intimacy. In other words, what are your sexual limits? What are you willing to try, even once? Developing your own sexual ‘playlist’ as you seek to increase your repertoire can be a fun way to take the pressure off by focusing on what feels good, not what ‘should’ feel good. With the right attitude, the issue may no longer be what the couple can’t do but instead be all the things they haven’t – yet. The sexual repertoire is endless so experiment and find out what works best for you.

A happy healthy sex life is vital for any couple and despite having a diagnosis of endometriosis/adenomyosis, it is achievable with communication, the right attitude and a sense of fun.

If you would like get in touch with Maggie, you can reach her via maggiegitu@hotmail.com, +254 734 757 785 or @MaggietheMezzo .

I initially shared this post on my other blog Bibi2be.com

Pain during sex affects a woman and her relationship. My heart has had a burden for women who are going through a hard time in this area. This August, I will be hosting an event to support women who have struggled with pain during sex and the emotional turmoil that it comes with.

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If you are a woman living with Endometriosis in Kenya who would be interested in talking about pain during sex more candidly with a small group of women facing the same challenge and a counselor, please send me an email via yellowendoflower@gmail.com and I’ll send you more details. Due to the nature of the conversation, the sessions will be very small.

Blessings,

Ess