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.

courtesy ofhttp://signaturextra.com/5-medical-conditions-ways-to-deal-with-painful-sx

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

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#TheKenyanEndoStory : Nurah Palesa

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The first Kenyan Endo warrior sharing her story with us is Nurah Palesa. Hers is a story of pain, despair, strength, courage and hope.

Before I turned 10, the year that pain became the filter to which I would see life, I was eagerly awaiting my periods. I looked forward to it like a boy would await his ceremonial rites of passage. I wanted to see the drops of blood on my underwear and have a crazy happy dance celebrating my new life as a woman.

 

I am Queen Nurah, and at the age of 25 I have lived with Endometriosis for 15 years now. I run on happiness. There is no one thing that makes me happy, a combination of the things that pull my heart strings is how I live. As for my profession, let’s just say that I am a Storyteller and Poet.

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Where it all begun

 

The pain begun immediately I started my periods. I was sitting in the back of the class, talking as usual and ignoring what the teacher was writing on the board. Then my insides were attacking me. It felt like someone had run a knife across my abdomen over and over again. I shakily put up my hand and asked if I could go to the bathroom.

When I got into the cubicle, something told me to check my underwear and hoorah I had blood. But I couldn’t do the crazy happy dance, not with the pain that I was feeling.

I remember going to one of the “nice” female teachers and telling her I got my period and that I was in intense pain. She was nice, she showed me how to put a pad on and for the pain she said that it was normal and hot water would help. “Normal? Are you crazy, I feel like I’m dying!” I thought to myself as I gave her a look that showed I thought she was crazy.

Maybe two hours later, I don’t exactly remember, my mother was called because now I was wailing and “causing a scene”. Hehehe, causing a scene.

At the end of the day my mom gave me Syndol. Yep Syndol. That confirmed my suspicion that the pain I had was not normal and for the next 7 days I suffered.

 

Managing the pain

For 13 years I was subjected to excruciating pain before my periods, during my periods and 3 days after my periods. In total I was in pain 15 days out of the month.

I ended up having a cocktail of painkillers in my bags. Here is the list with what I started to what I take now:

  • Syndol (4-6 pills in an hour/day)
  • Betapyn (5-6)
  • Postan (10)
  • Brufen (10)
  • Buscopan (10-12)
  • Buscopan plus (it would land in my stomach and I would throw up immediately)
  • iBoprufen (40 mg 6, 80mg 7-8)
  • Vykadin (6)
  • And now I’m on tramadol 100mg and when the pain gets really bad I go for the shot.

And while I was on these pain meds I sometimes found that mixing them would help. And when I say help, I mean level the pain to a degree that I could function and not snap at people.

The pain haze of life is amazing. It changes how you look at everything and how you react. Physical pain makes life 300 times worse. Well for me. Someone else could be different.

I had the worst mood swings, had a short fuse and basically I would just want to cry and be alone most of the time. I am generally a nice, gentle happy Queen, but you don’t want to make me mad when I am in pain.

Oh wait, did I forgot to mention that I would get high off the pain meds… lol aaaand that I was a heavy alcohol drinker. For 7 good years.

The combination of alcohol and a cocktail of pain meds made the pain bearable.

I remember when I joined uni and my girlfriends would watch me pack my clutch bag with tampons and meds (3 strips of 10 so basically 30 pills) and they would ask if I was ok. Little did they know that I would have gone through 2 of the strips by midnight.

I would literally get high just to escape the pain.

When I was 22, fresh out of rehab (because others thought that alcohol was the problem) the pain kicked up a notch.

 

Finally, I got a diagnosis

 

Lower back pain and shoulder pain had kicked in, and I needed to know that there was a name for what I was going through. I went to see a gynaecologist and he diagnosed me with Endometriosis. I thought that finally I can get rid of the pain for good now that it’s an actual disease.

I went online and decided to learn all I could about my condition. That’s the type of person I am, I read and research on topics that are of interest to me. So I did what I do best; gather intel.

I found out that foods (which I had always known, I’m very strict with what I eat.) contributed to the pain levels and there was a diet I could start.

Eh….that diet did not work. In fact I ended up increasing my pain and losing even more weight.As for the endo diet, which is vegetarian I really tried… My body just didn’t accept it.. And recently I discovered that diets don’t work for everyone,  our blood types play a big role in the foods we need and as an O+ I need meat.. (Sticking to white)
So again I run around for another year looking for a solution and I found one. Or so I thought.

I went through a Laparoscopy where The Gynaecologist lasered the extra endometrium tissue that covered my ovaries and fallopian tubes and he put a Mirena Coil so that my fertility wouldn’t be compromised. (I had stage 4 of Endo at this point)

 

Relief at last

 

For the first time in 13 years I had no pain.

I loved my life; a zeal for it (which I still have) was born. You know when someone tells you to live life to the fullest and do what you want to do and wave your hands in the air like you don’t care?? Lol, yeah I did that for 3 good months before the pain came back.

 

Back to reality

 

As I write this I have the worst headache ever and my back and shoulders have decided to kick into level 400. The last two days have been brutal because I am ovulating and I can feel the damn egg travelling.

I could change my diet again or find some radical something that will help “ease or get rid of” the pain, maybe even look at the spiritual aspects of it, but my reality is that I am meant to have this pain. I’m just supposed to rise above it and live life to the fullest and that’s not an easy task.

Yoga helps me. And meditation. And maybe some teas here and there. Lemon, ginger and honey is amazing. I generally try and avoid junk and fast foods and sodas… Been on a general healthy diet from the word go.. My moms always been conscious about food.

 

Endo and Family

 

My family is very open with each other; my mom and sister also have endo and my brother was told early on about our periods.
The extended family is a whole different story. I like avoiding them as they disturb my positive energy fields.

I would love a whole football team of children lol.. 

Endo is genetic, my mom and I traced it back to her grandmother(Her dads mom)  so for me it doesn’t really matter if I have a daughter or son,  I’m going to have to tell them asap about endo.. And what they can do from the word go.

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Parting Shot

 

To my queens and princesses I agree it is soo not fair that we endure this pain.

Search for your solutions and remedies. Don’t let anyone stop you. 

However do not forget to live life to the fullest. Do what makes you happy; love yourself and play in the rain.

Oh and please be kind to your sister queen/princess.

Seriously, we women can be brutal to each other and it’s about time we stopped.

The black rose is my favourite flower.

You can check out Nurah’s blog here.

Follow her on Twitter and Instagram.

Thank you Nurah 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

 

#TheKenyanEndoStory

When I was diagnosed with Endometriosis, I only knew one other woman with Endo and she was not willing to talk about her journey because of the stigma she had received. I was alone; I felt like an anomaly. My journey with Endo was very lonely and depressing. There are many times that I was almost consumed by these feelings. Suicide crossed my mind a couple of times. By God’s grace, I made it through.

As I researched about Endometriosis a few years back, I realized that there were many stories from the UK and USA but very few, if any, from Kenya. A few years later, I found other women in Kenya who were fighting Endometriosis; I was encouraged and wished I’d heard these stories of pain, strength and courage earlier.

 

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A couple of months ago, I had a dream to share stories of women suffering from Endometriosis in Kenya. I wanted the world at large and the people of Kenya to know that:

*If you know ten women, you know Endometriosis. It affects one in ten women.

*Endometriosis does not fit in a box, it is vast and multi-faceted. It attacks different organs, so every woman’s experience in unique.

*Endometriosis doesn’t have a trademark look. Many women are suffering yet they look normal. Behind their smiles are souls that carry pain unknown.

*Information is power. The more we talk about Endometriosis the more women we empower and together we decrease the stigma.

*We need policies that support women with Endometriosis in Kenya

*Specialized healthcare needs to be more affordable and accessible. Getting a diagnosis in Kenya is like buying a parcel of land.

Several months later,

Ladies and gentlemen, I present to you a new segment on this blog #TheKenyanEndoStory. yellowendoflower.wordpress.com.

It will feature stories of pain, hope, courage and strength to encourage women in Kenya and around the world. The first story goes live in a few minutes.
If you would like to be featured in ‘Her Endo Story’ #TheKenyanEndoStory, please send an me an email via yellowendoflower@gmail.com and I will be in touch.

Blessings,

Ess

 

The Lonely Side Of Endometriosis

I’ve been unwell the last couple of days. The levels of pain reminded me of an Endo flare and the memories all came flooding back.

Yestermorning, I read the story of the woman who hemorrhaged for twelve years and had spent all her money on physicians in Luke 8. They couldn’t find a cure.

43 A woman in the crowd had suffered for twelve years with constant bleeding,[g] and she could find no cure. 44 Coming up behind Jesus, she touched the fringe of his robe. Immediately, the bleeding stopped.

45 “Who touched me?” Jesus asked.

Everyone denied it, and Peter said, “Master, this whole crowd is pressing up against you.”

46 But Jesus said, “Someone deliberately touched me, for I felt healing power go out from me.” 47 When the woman realized that she could not stay hidden, she began to tremble and fell to her knees in front of him. The whole crowd heard her explain why she had touched him and that she had been immediately healed.48 “Daughter,” he said to her, “your faith has made you well. Go in peace.”

This really reminded me of Endometriosis, and my heart just went out to all the women suffering from Endometriosis. The truth is that unless we too, figure out how to touch the hem of His garment all we are doing is simply trying to manage the condition. There is no known medical cure for Endometriosis. 

After being sick for such a long time, you realize who your true friends are. Your life comes to a stand still. The vibrant life you once led now becomes a distant memory. As much as you would like to, you are not physically able to do everything you’d like to do. And it hurts. It hurts to watch a part of your life fade away. It’s sad when getting out of bed was the biggest achievement of the day.

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The shame. The questions. The roller coaster of emotions. The question “You are STILL sick?” becomes a constant. The labels are disheartening. The despair. The dismay. The disappointment. The discouragement. All these other things that come with Endometriosis make it a very lonely journey. Not many people are able to understand the turmoil and pain that you experience. Not many people understand the desperation to get well. Often we see people do seemingly crazy things in the hope of getting better. What I’ve learned is that unless you walked in the person’s shoes, you are better off shelving your judgement. You don’t know their pain. I know that I too have had crazy thoughts; I have been desperate for the pain to end. In those moments I was willing to do almost anything to take the pain away.

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Today I just want to encourage all women who feel like hope is lost, that you are not alone. As you lay in fetal position and cry your heart out, you are not alone. The Lord who knit you in your mother’s womb is right there. Do not stop pressing in, keep believing.

Sending you love and light,

‘Big Sis’

The Other Side of Endometriosis

Happy new month (:

For several years, I have spent time and money dealing with the symptoms of endometriosis. There have been countless doctor visits, lots of pills swallowed, scary surgeries. I mean, any surgery is scary, lots of anxiety, insomniac nights and worry.

However, when it comes to dealing with the root cause, I shy away. All of a sudden, I am too busy, or suddenly, some things seem to private; yet I have seen countless of doctors trying to decide what was wrong with my privates. The irony.

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A couple of weeks ago, I decided to go on an emotional journey, one of trying to figure out what triggered Endometriosis symptoms. This has been perhaps one of the hardest journeys I have ever been on. It makes the countless visits to the gynecologist , even the scary surgeries, seem like nothing.

Here I have had to get real with myself. Accept that I have been hurt, in fact, I am still hurting and what do you know, it is okay. It is not too late to receive healing. It is not too late to work through these emotions. Walking down this road of emotions can easily ruin my day, because I never quite know what I will find. I am so used to keeping up face that I almost forgot what I really look and feel like, without all the plastic ‘I am doing great’ smiles.

For years, I would gnash my teeth as I slept. If you ask anyone in my home of origin, they will tell you that Bruxism was synonymous to me. I was sometimes too embarrassed to go sleep out of the house because people would hear my not so musical tunes; worse still, they would judge me. Yet contrary to popular belief it was not something I had control over.

After I got married in 2012, it stopped after a couple of months. Oh thank God, it stopped. I finally felt safe. There were days I would wail myself to sleep, trying to sort out my emotions, but it looks like those tears cleansed me of anxiety. Now I don’t gnash my teeth anymore, I am sure my husband is so relieved.

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So maybe other Endo symptoms are a lot like Bruxism. You don’t have much control over them when you experience them. But, if you are willing to make a few changes in your lifestyle here and there, the severity might reduce.

Maybe we need to deal with Endometriosis from the inside out. Get healing from the inside out.

I was awaken, when I have joined EndoPositive™ International, and over there it was brought to my attention that endometriosis is a psychosomatic disease. I thought then, psycho what? I realized, we live in the world, where we will so much easier accept pills, surgeries over work on ourselves! Only when I realized, how serious it could get, if I continue to overlook my unconscious mind, I finally woke up! And I am glad I did!

Today, I continue working towards the self love, forgiveness and self awareness. Perhaps you could give it a try. You will be surprised how many things you will find out. If you feel, you are not ready, consider

I originally posted this article on EndoPositive™ International’s website in September ’15 under the title ‘What if you have been looking at Endometriosis all wrong’. My journey has been difficult, refreshing and healing all at the same time. I am still a work in progress, not where I was when I originally penned down this article. My health is at a better place.

 

Have you considered that there could be more to Endo than meets the eye? How has your journey been?

‘Big Sis’