My Endometriosis Diagnosis and My Motherhood Journey

I have been battling with stage 4, widespread Endometriosis for what has been a good part of the past 10 years. Endometriosis occurs when cells, like the ones in the lining of the womb, are found elsewhere in the body. These cells react the same way each month as those in the womb do, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. Therefore, this process causes debilitating symptoms such as chronic pelvic cramps, lower back pain, painful sex, bowel dysfunction & pain, bladder pain, chronic fatigue, and infertility.

I was diagnosed with Endometriosis two weeks before my 18th birthday. This was after I had been misdiagnosed in my previous 2 surgeries (one of which that led to me having my appendix removed). It was confirmed that I had widespread, stage 4 endometriosis throughout my pelvis covering my bladder, bowel, ovaries, and Fallopian tubes. This diagnosis resulted in me getting a bowel resection.

Treatment I am Recieving for Endometriosis

Fast forward to now, and I am currently recovering from my 10th surgery, all thanks to this disease. Due to having such extensive damage on my bowel, in Oct 2018 I was fitted with a Sacral nerve stimulator to help it function (like a pace maker, but for the bowel). It’s a relatively new treatment, and we still haven’t found a setting which works for me how we would like it too. It’s a little frustrating, but I’m sure I will keep you updated and go into detail on one of my posts.

Unfortunately, a couple of weeks after my recent surgery I was admitted into the Royal Liverpool Hospital for a week due to my bowel becoming extremely dilated. In turn, this caused horrific abdominal pain and my bladder to constantly be in retention. As a result of this I now have a catheter in for the next 6 weeks, whilst I trial new bowel medication Resolor. This was sprung on me out of nowhere. Yes, I’ve had endometriosis removed from the bladder in the past, but it’s never caused problems to this extent. It’s been an adjustment and is something I’m still trying to wrap my head around. It’s a knock-on effect with this disease. My self confidence has taken a great big nose dive the last few weeks. I am trying to adjust to my new normal, but I’m trying to be patient. It will come with time I’m sure.

One of the things I am incredibly grateful for is that our beautiful 3-year-old daughter Grace is in our lives. She truly is a little miracle. We had everything stacked against us, but one day when we least expected it, we saw those two positive lines on our pregnancy test. We were 2 weeks away from starting our first cycle of IVF when our dreams came true.

My Pregnancy Experience

Pregnancy was difficult. I bled throughout my pregnancy, suffered with Hyperemesis Gravidarum, was high risk throughout, and then Grace decided to make an early appearance at exactly 35 weeks. We felt incredibly lucky that she had defied all odds and was healthy. Fast forward to today, and we now have a very happy, sassy, and mischievous 3-year-old. We always intended to grow our family and give Grace a sibling, however, unfortunately, it was not meant to be.

My Motherhood Journey while Experiencing Endometriosis

Longing for Another Child

We were medically advised not to have more children for the sake of my health. Those words were extremely hard to digest and accept. In all honesty, I’m not sure if I’ll ever get over hearing those words. My disappointment in no way means I am not incredibly blessed and thankful for our beautiful little girl, because believe me, I am. But, it’s more so that the choice to have another child has been taken away from me (like it has been for so many others). The choice that so many can take for granted is the choice we long for. I think many people can make the mistake of assuming that you are ‘selfish’ if you want more than one child and that you should be ‘happy with what you have’. Just because you have one child, that doesn’t mean it takes the pain away from feeling like you don’t have a choice.

Motherhood is a beautiful journey, but it can also be a very tough one. Add a chronic illness into the mix, and some days you can feel like everything if falling apart. My thought while writing this is that if I can open up about my journey with Endometriosis and motherhood it may help me mentally arrange my thoughts, as well as hopefully help someone reading this. I want anyone in a similar situation to know that they are not alone. Being chronically ill and a mama can be very isolating and lonely at times, so I want to help others feel less alone.

About the Author

Anna is 25 years old and she lives in North Wales with her husband Scott and her beautiful daughter Grace. Anna has decided over the years to share her journey of battling a chronic disease whilst trying to be the best mother she can be. She originally started sharing her story on Twitter (@BattleWithEndo), and then moved to Instagram (@battlewithendo_ox) with the intention of starting a blog.

March 18, 2019March 1, 2019

EndoMEtriosis and Me

Endometriosis can be a very shocking diagnosis for some. I knew it was coming because I’d already done research into my symptoms and pretty much knew going into my diagnostic surgery that that would be the outcome. I was lucky in the fact that I knew it was coming, my diagnostic process was quick and that I already knew I didn’t want children.

My Endometriosis Journey

I was diagnosed in 2010 when I was 21, I had been having bad periods since I had my first period at 14. I told my doctor about the painful periods, nausea, headaches and back pain. Her recommendation was to put me on birth control which I did and that seemed to help my symptoms up until I had a ovarian cyst burst and went to the emergency room. While at the ER, I was put through a series of test and after several hours was referred to a gynecologist that specialized in Endometriosis. The gynae suggested that I needed to have a laparoscopic surgery to go in and see if they could see the disease. A few months later I was in for the lap and diagnosed with stage 4 Endometriosis.

After trying many medications including Lupron and Visanne I was sent to an Endometriosis specialist. I chose to have a hysterectomy in 2013, the surgery went well and I felt better for 6-8 months after. I felt pretty much the same as I did before the hysterectomy but with some improvement. Now, I’ve been trying alternatives like cannabis, essential oils, yoga, martial arts, etc. I’ve found that movement, diet and cannabis have been my biggest and most helpful changes. Replacing some of my medications with cannabis. Watching what I eat and paying attention to how foods make me feel. Joining a martial arts gym and doing jiu jistu and muay thai have made me motivated to keep active while enjoying it.

yoga for endometriosis
endometriosis medication alternative

I would encourage everyone to try and make some positive changes and see the reaction you get from your body. I love the changes I’ve seen in myself. Physically, mentally, spiritually and I feel like I’ve really started to grow.

Cannabis Activism

When your remaining options are drugs you’ve already tried and/or more surgery what do you do? I didn’t want to take harmful medications again (Lupron) and wasn’t willing to have another surgery. Cannabis was something I already knew about and refused many times. I was actually against drugs of any kind, including anything you could get at the drug store. I would only take a pain pill very rarely if I could no longer handle the pain, usually one of my bad headaches.

I started using cannabis at a very delicate time in my life. Having attempted to committing suicide because I foolishly thought I’d be better off dead. I immediately regretted it and my best friend drove me to the hospital. After I was discharged, I stayed with my best friend for a week. She introduced me to cannabis and I have never looked back.

endometriosis cannabis
endometriosis cbd
endometriosis medication alternative
endometriosis help

Cannabis gave me my like back essentially. It helped all my symptoms including my severe pain. I realized I didn’t have to live in pain and there was more to life than me being bedridden, lonely, in pain, extremely depressed with no hope. I opened my mind to something new and it ended up turning into something wonderful. I feel like myself and like I can function day to day. Don’t get me wrong I still have my bad days where I stay in bed or set myself up on the couch and just veg out. Overall, my quality of life feels like it is so much better!

Many Forms of Cannabis

There are more ways to consume cannabis other than smoking it. I found that CBD products are extremely beneficial. There are so many products out there so it’s important to research what your buying. When you find out how much CBD you need daily you will see the results in how you feel. Like anything, it’s not for everyone and many not work for everyone. CBD is something that needs to build up in your system like many medications.

Using cannabis in any form should be started slowly. Start small and see how you feel. Like anything if it is not legal where you are, I am not suggesting you do anything illegal. Many places have legalized medical marijuana or legalized for recreational use. I am located in Canada where we have legalized both.

Kristen McRobie is the founder of Endometriosis and Me. You can visit her website at http://www.endometriosisandme.com/about-me

January 31, 2018June 21, 2019

What to expect with a Hysterectomy

A hysterectomy is the surgical removal of the uterus. It can be a daunting experience, this post was written with the intent to provide you with a patient’s perspective on the pros, cons and realities of a hysterectomy. This post is not intended to replace medical guidance or treat any condition. Please discuss the risks and benefits of hysterectomy with your doctor if you are considering a hysterectomy.

Different types of a hysterectomy-

Subtotal hysterectomy- removal of the upper part of the uterus, leaving the cervix in place.
Total hysterectomy- removal the entire uterus and cervix.
Radical hysterectomy- removal of the entire uterus, tissue on the sides of the uterus, the cervix, and the top part of the vagina. (Typically is only done when cancer is present.)

Reasons to have a hysterectomy-

Uterine Fibriods- Fibroids are benign tumors that grow in the muscles of the uterus.
Endometriosis- Endometrial tissue grows on the outside of the uterus and on nearby organs, causing pain, infertility and endometriomas.
Cancer
Uterine prolapse- Benign condition in which the uterus abnormally moves and shifts into the vagina.
Hyperplasia- The lining of the uterus becomes too thick and causes abnormal bleeding.
Unresolved Pelvic pain
Unresolved Abnormal bleeding

Different Surgical Techniques-

Vaginal hysterectomy- The surgeon makes a cut in the vagina and removes the uterus through this incision.
Laparoscopic hysterectomy- This surgery is done using a tube with a camera and surgical tools inserted through incisions made in the belly. The surgeon performs the hysterectomy with the use of surgical tools by viewing the operation on a video screen.
Laparoscopic-assisted vaginal hysterectomy- The surgeon removes the uterus through an incision in the vagina assisted by laparoscopic surgical tools.
Robot-assisted laparoscopic hysterectomy- The surgeon controls a robotic system of surgical tools to perform the hysterectomy by using laparoscopic incisions.
Abdominal hysterectomy- Hysterectomy done through an open abdominal incision, giving the surgeon broad access to the pelvic organs.

Patient’s Perspective-

Deciding to have a hysterectomy is a daunting decision. You and your doctor need to have an extensive conversation regarding the risks and benefits of whether this life changing surgery is the best choice for you.

Things to consider-

Your quality of life.

Is your pelvic pain inhibiting your life? Is it impacting your ability to work, sleep or function normally?

Is your cycle normal? Are you bleeding heavily or more than once a month?

Is it impacting your intimacy?

Are you missing work or social functions because of your symptoms?

Are your hormones out of balance?

Do you have fibroids, endometriosis or frequent ovarian cysts?

Are you in pain?

Do you frequently rely on pain killers (such as NSAIDS, tylenol or prescription pain medication)?

The answers to these questions are what you need to speak with your doctor about if you are considering a hysterectomy.

Your quality of life is what matters.

A hysterectomy is a tough choice. It renders a woman unable to ever carry a biological child. It is life changing surgery and should not be taken lightly.

That being said, if you are suffering and a hysterectomy can help you….it is all but worth it.

Personal Note-

At 25 years old, I had to make the tough choice to have a hysterectomy due to uterine fibroids, endometriosis and severe pelvic pain. I tried every viable option before making this difficult, heartbreaking choice. I tried every form of birth control, natural hormone, pill, cream, IUD and surgical option- all to no avail.

I have aggressive endometriosis. Since the age of 12, I have suffered with agonizing periods, abnormal bleeding, menstrual migraines and pelvic pain. It only seemed to get worse the older I got.

I had my first gynecological surgery at age 18 after endometriosis was discovered during an appendectomy/cholecystectomy. I had a pelvic D&C surgery done just about every year after that due to the endometriosis, fibroids and pain.

I tried birth control pills.

I tried bio-identical hormone therapies.

I tried alternative therapies.

I tried progesterone cream.

I tried estrogen patches.

I tried two different IUDs. (Skyla and Mirena)

I tried several surgical options.

Nothing seemed to quell my symptoms or stop the aggressive endometriosis.

The Final Straw-

I had to travel back to North Carolina from Florida due to Hurricane Irma. I was stuck in NC for over a month and had my period the entire time. Already fighting Addison’s disease and Medullary Sponge Kidney, the strain on my already taxed body was just too much. The agonizing cramps, non-stop bleeding, menstrual migraines HAD to come to an end. I knew that a pregnancy would be dangerous if I ever attempted it. The odds of me successfully carrying a baby full term were slim to none.

I made an appointment with my GYN and voiced my concerns. He agreed with me that a hysterectomy was my best option.

On November 22, 2017 I had a total hysterectomy. The surgeon informed me that I made the right decision and my uterus could not have been saved. My endometriosis was so aggressive that it had covered my uterus, cervix Fallopian tubes and created an endometrioma on my left ovary- all of which had to be removed.

As a woman who wanted children, I was devastated but knew I made the right choice.

-What to expect-

Emotional Impacts-

As prepared as I thought I was, emotionally this surgery hit me hard. I do not regret my decision, but it is hard knowing that I will never be a mother. Prepare yourself for the loss. It is, indeed, a loss. This surgery takes away your ability to conceive a child, but it doesn’t take away your ability to be a mother, to nurture and to love.

This surgery also takes away horrible cramps, seemingly endless menstrual periods and fears of miscarrying and passing on horrible genetics.

Focus on what you are gaining from this surgery, not what you are losing.

If you are still struggling with emotional balance, seek help. Inform your doctor. There are many options for dealing with post-hysterectomy depression.

Physical Impacts-

I am not going to sugar coat it, this surgery is a painful one. Be sure you have a conversation with your surgeon about post surgery pain relief because you will need it.

Be sure you have pain medication, proper hydration and nutrition during your recovery.

You will need to sleep a lot to recover. There is no shame in this. Pushing through the pain will stall your recovery. Give your body what it needs, be gentle with yourself.

You will struggle to sit on wooden chairs, walk up stairs and bend over to grab things.

Ask for help if you need it. Don’t push yourself.

After my hysterectomy, I struggled to urinate on my own. This can be a complication from anesthesia. You may require urinary catherization post surgery. Be sure to communicate with your healthcare team if you are having trouble urinating to prevent discomfort and infection. Do not strain to pee! This can cause you to rip your incisions! If you are struggling, communicate with your nurse/CNA.

Relationship Impacts-

A hysterectomy doesn’t change who you are as a person, but it does change your physical ability. Some people may not understand what you are going through. Some people may say mean things like “You are selfish for choosing not to have children” or try to place guilt or blame on you.

DO NOT ALLOW THIS!

You had to make this difficult decision, if anything YOU ARE the victim here and NOT at fault.

You are not less of a woman just because you cannot have a baby.

You are not less of a woman because you no longer have menstrual cycles or a uterus.

You are not at fault. You are not to blame.

Your quality of life is what is important.

Those who truly love you will understand.

I hope this article helps you understand the reality of a hysterectomy.

Below is the video of my personal story with my hysterectomy.

Wishing you hope & healing,

-Win

To read more from Winslow click the link below-

https://winslowedixon.wordpress.com/

November 16, 2017November 17, 2017

Understanding Endometriosis

Endometrosis is a condition in which the inner lining of the uterus (the endometrium) breaks through the muscle wall of the uterus and spreads to other parts of the body. Symptoms can be menstrual cramps, lower abdominal pressure, irregular menstrual periods, heavy/painful periods, infertility and miscarriage.

The condition range from mild and painless to extremely debilitating.

The only way to officially diagnose this condition is by surgical discovery, as endometrial cells do not show up on ultrasound.

Endometriomas may also develop with this condition. Endometriomas are a type of cyst formed when endometrial tissue grows in the ovaries.

Endometrioma can also be referred to as an endometrioid cysts. These can cause excess bleeding, severe pain and affect fertility.

If you are having painful cycles, consult your gynecologist.

The treatment for endometriosis is typically oral hormone therapy with contraceptive medication (birth control pills).

There are also alternative treatments such as bio-identical hormone therapy- progesterone cream or Hormone Pellet Therapy.

Ovarian cysts in normal women typically occur and go away on their own, but sometimes in women with endometriosis these cysts become endometriomas which may have to be surgically removed.

Please have regular ultrasounds if you have been diagnosed with endometriosis.

Also, please be aware of your hormone levels. Estrogen Dominance is common in women with endometriosis, PCOS and auto-immune disorders. Your doctor can order a lab called a “female hormone panel.”

Avoid soy products if you are estrogen dominant, as these are phytoestrogens and can cause hormones to be disrupted.

This disease affects different women in different ways, but the most consistent symptoms are painful periods, painful intercourse, heavy bleeding, pelvic pain/tenderness and infertility.

Hormonal disturbances such as hot flashes, breast tenderness and emotional mood swings have also been contraindicated.

If you are struggling, please consult your gynocologist.

SOURCES-

Full medical description of Endometriomas

Full medical description of Endometriosis

Personal Note-

I suffered from severely painful menstrual cycles since the onset of puberty at 12 years old. I would bleed for weeks at a time, sometimes have cycles that lasted for months. I saw multiple gynecologists throughout my teenage years and suffered through many horrific periods and different birth control pills, patches and hormone adjustments. I finally found a physician willing to listen to me and at 18 years old, I had a diagnostic pelvic D & C because the doctor was sure I had endometriosis. His diagnosis was confirmed and I had stage 4 endometrosis removed. I was put on hormone therapy after that, but it caused my migraines to increase and I could not stay on them. I went unmedicated for years and the endometriosis returned with a vengeance. At 22 years old, I started having absolutely debilitating pelvic pain. I went to the emergency room and discovered I had a cyst on my left ovary. They told me it would go away. In normal women it does…..mine did not.

I suffered with it for a year. Just accepted it was a part of life and lived off of advil. I had kidney stones too, so I was used to being in pain. My health was declining anyhow at the time. (I had undiagnosed adrenal failure)

I went on a trip to Myrtle beach, SC and spend the entire day in the ocean. Later that night, I had a sudden, sharp pain that was horrific. I knew something was wrong. I called my GYN and as soon as I got home had an ultrasound. The ultrasound showed I had a large endometrioma. When my GYN got the ultrasound result, he told me my ovary was damaged and needed to be removed.

I ended up having that surgery and got an IUD to prevent the endometriosis from returning.

Fast forward 3 years, I’ve had 2 more surgeries since then and am scheduled to have a hysterectomy this coming week. I have aggressive endometriosis. I have had so many endometriomas that just won’t seem to stay away. I am also estrogen dominant. My grandmother passed away from endometrial cancer. Every single one of my dad’s sisters have had to have a hysterectomy before age 30. It runs strong in my genetics. It is tragic? Yeah. I wanted to be a mother, but the risk of cancer and the pain is just too high.

My message is this-

GET REGULAR ULTRASOUNDS! DON”T IGNORE YOUR PAIN.

If your periods are lasting longer than 7 days, something is WRONG.

Keep an eye on your iron levels.

See your GYN.

Wishing you all hope and healing

Love, Win <3

This post is not intended to diagnose or treat any medical condition. Consult your health care provider before starting or stopping any medical treatment.

I am NOT a doctor, nor do I claim to be. I am simply a woman who has done much research to understand disease and seeks to help others understand as well.

Click to read more from Winslow E. Dixon

April 28, 2016June 21, 2019

A Spoonie Story: Kathy Marie

I just decided to leave yet another “support” group for chronic pain… because all too often there is a subtle, and sometimes not so subtle- tendency to try to one-up another in terms of pain. “Oh I have EDS- you don’t know pain until you know EDS pain” “Well, I have CRPS, you don’t know pain until you know CRPS pain” “I have Fibro- and that trumps EDS and CRPS- I’m in pain 24/7” “Well I’m in pain 25/8- beat that” and on and on. Gawrsh it’s so tiring and annoying!

Experiencing Pain

Pain is pain. All of us with CP conditions know pain. We know it intimately. We experience pain levels that would have “normal” people dropping to the ground in agony. And does that make us better than anyone else? Uh no- it doesn’t! I’m so tired of the constant battle to compare and be the #1 Pain Warrior. Just battling the pain alone makes me exhausted. Why should I have to “prove” my pain is “more” than anyone else’s? Frankly- I hate that ANYONE suffers from chronic pain, at any level.

I hurt. I hurt a lot. All the time. In fact, after being awake for more than 72 hours dealing with a flare, I crashed yesterday and slept 17 hours. And I’m awake now- still feeling tired. Still hurting. And that doesn’t make me better than anyone else. It’s just my reality. And I am positive that other CP sufferer’s realities are just as painful, just as tiring, just as depressing. I pray for all who hurt. And I pray that we can be more aware of one another’s battles, and just wish each other comfort. Recognize, validate, support. There’s no possible need to be “the best” at it.

Pain is Life-Changing

I’m sad that it seems that one of the constants of dealing with CP is negativity and competition. I really hope to change the stigma that is attached to CP through my writing- maybe I can’t change the worldview, but if just one person says, “Wow, I never knew pain could be so life-changing” then I have done my job.

Yes, pain IS life changing. And a good amount of that change is scary, and dark, and horrible, and maddening and lonesome. But some of that change- some of it is good. And precious. And miraculous. And life affirming. And when you think of it in those terms, it doesn’t seem quite so competitive, does it? Instead, it becomes a very personal and meaningful way to own your pain and apply what you have learned about it to other areas of your life.

How I Cope

I journal daily- sometimes poetry, but it’s mainly free-form journaling- just whatever comes to mind and let it all out; and lately I’ve been journaling ALOT about this Chronic Pain journey I have found myself on. Just the other day I leafed back to the beginning of one of my journals and I read something kind of similar to today’s frustration. That journal was 6 years old.

I have taken a huge leap of faith and begun my own blog, “Blessed- My Chronic Pain Journey” on Facebook, inspired by the Spoonies For Life Support Group that I am a part of. I’ve been writing forever, but I always poo-pooed the idea that it was ever “good enough” to publish. I posted in the Spoonies support group a shorter version of what you are reading now, about my decision to leave another Facebook support group due to the sense of one-uppery (is that even a word lol? :-p ) and competition among its members.

A fellow CP Warrior and writer, Tina Barzano, encouraged me to write an article for the SFL website… and then it was like a cosmic explosion happened and I realized that I could use all this life-changing pain for the greater good. I hope that this article and my blog inspires others as wonderfully as Spoonies For Life has inspired me. I find it amazing that at age 43 and at the most challenging time of my life, I am experiencing the joy of rebirth.

I firmly believe this all happened for a reason- my post, all the wonderful supportive comments, Tina’s gentle persuasion; I’ve been searching for some meaning to my CP journey, a reason as to why I’ve been cursed with such a life. After this experience, and the wonderful responses I received, not only do I think I found that reason- but I’ve also changed the word cursed… into blessed.

Namaste, dear ones. Thank you for inspiring my daily and hourly- and I wish you all pleasant days and peaceful nights.

Bio:
Kathy Marie is a happily married 43 yr. old mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

March 2, 2016

What you need to know about endometriosis

Endometriosis is a medical condition that affects the inner lining of the uterus. This lining, called the endometrium (hence the name endometriosis), normally grows inside the uterus, but in this case, it grows outside. Endometriosis often found around the pelvic region, thus affecting the following organs; the ovaries, the fallopian tube, the outside the uterus and the bowel. Only a few cases have been found where the endometriosis affects the diaphragm and lung areas.

It is an extremely painful disorder and often difficult to be identified because it disguises itself as normal periods. The misplaced tissue continues to grow into lesions that resemble the menstrual cycle because it behaves in the same way as the tissue of the uterine line. As the tissue progressively grows each month, it gets to a point when it breaks down and releases blood. Unlike the menstrual blood which finds its way out through the birth canal, the bloodshed as a result of endometrial growth remains within because it lacks an exit. Continued stay of the blood in the body leads to more bleeding, the breakdown of the blood tissue and even inflammation, which leads to severe pains, bowel disorders, infertility adhesions and other complications.

Unfortunately, endometriosis is a common disorder affecting women all over the world. According to endometriosis.org, the disorder is estimated to affect one in every ten women during their reproductive years, that is women between 15 years and 49 years. In the U.S statistics show that it affects close to 6.5 million girls and women whereas in Canada it is close to 1 million and around 2 million women in the UK. The trend is the same the world over with an estimated 176 million women and girls being affected across the globe.

Symptoms

So, what are the symptoms of a person suffering from endometriosis? First, it is important to note that it is a chronic disease, and therefore, symptoms may vary over time from one individual to another. In very rare cases, some women show no symptoms at all. That said, the common symptoms include:

Experiencing pain before and after periods
Pain during sex
Feeling of tiredness all the time
Infertility
Painful urination during periods
Pain during bowel movements
Diarrhoea
Nausea

It may also include allergies, blood in stool and even coughing. The degree of how prevalent the symptoms are depends on where in the body the abnormal tissues are, as opposed to the amount of tissue. That is why it is possible to have only a small amount of tissue, but feel more pain than someone with a large amount of tissue.

Many women and health practitioners have many times ignored the above symptoms referring to them as normal menstrual symptoms. This results in a delay in diagnosis, and by the time most cases are diagnosed, it is at an advanced stage. It is, therefore, advisable to seek medical attention as soon as one suspects to be affected by the disorder. Sometimes it may be difficult to diagnose the disorder, but with the help of a specialist or a gynaecologist, it may be much easier. After a series of few examinations, the doctor should be able to determine whether to go ahead and carry out a laparoscopy. Endometriosis can only be effectively confirmed through the surgical procedure referred to as laparoscopy.

Laparoscopy follows the same rules of carrying out surgery. The patient is put under general anaesthetic before the operation. A small tube with light is then passed into the body through a cut at the belly bottom. Fixed with a tiny camera the object can send images to a video monitor to identify the endometriosis tissue. At the end of the process, a patient can know whether she suffers from the disorder or not and can go home on the same day.

Causes of endometriosis

One may also be wondering on what causes endometriosis. Experts in the medical field are yet to identify the true cause of the condition, but there are a number of theories linked to the cause. The retrograde theory says that the disorder is as a result of the menstrual cycle tissue back up through the fallopian tubes, which then implants in the abdomen and start to grow. Another theory says that the endometrial tissue starts from the uterus, spreading to other parts of the body by the blood and lymph system or through genes as per the genetic theory.

Another theory says that the remains of the tissue from when the patient was an embryo may later grow to cause the condition or the ability of some tissues in the embryo stage to affect tissues in maturity though in rare cases. Others have cited that where surgical transplants are not done carefully, the tissue may be accidentally implanted in other areas of the body. There has also been a link between exposure to TCCD and endometriosis. Women who are exposed to this substance are therefore likely to develop the disorder.

Treatment

The good news remains that a number of cases have been successfully treated even though there is no standard cure for the problem. Most cases have been treated by use of drugs. Other cases have also been corrected through surgery, but this depends on the level of expertise of the doctor and the level of the disease.

If detected earlier, the use of painkillers can be used to reduce the pain. Pregnancy has also been found to relieve the pain, but it is not a cure in itself. The use of hysterectomy, which includes removal of ovaries has a side effect of causing immediate menopause. Therefore, depending on the level and area affected, a doctor will choose any one or a combination of the above methods.

It is evident that this a condition that is difficult to deal with in treatment and has adverse effects on the physically and emotional conditions of those affected. Women and medical officers alike need to be given more awareness on the diseases and more support centres such as ‘Endometriosis UK’ need to be established.

Read Jen’s story about life with Endometriosis.

February 25, 2016June 21, 2019

Spoonie Story: Annette

Hi, my name is Annette and I’ve been a Spoonie my whole life. I have several birth “uniquenesses”. I had surgery the day I was born where they removed a rib which caused scoliosis. I had open heart surgery when I was 4.

I was blessed enough to to have been able to deliver a beautiful baby boy when I was 19. I say this because after him I could not have other children. I met my wonderful hubby when I was 25, with him I also was blessed with a beautiful daughter (don’t like to use step-daughter because I raised her since she was 4). I was married for only a year when I had to have a hysterectomy, they found I had endometriosis and 2 uterus, they also diagnosed me with Fibromyalgia and found I had thyroid cancer. Was also diagnosed with migraines and cluster headaches. That was a very hard year.

Been happily married now for 20 years. Two years ago my thyroid cancer came back, had 2 surgeries to deal with that, because first surgery the results came back negative for cancer but the tumor came back. I also suffer with depression, Degenerative disc disease (DDD), Restless Leg Syndrome (RLS), and sleep apnea. Was diagnosed with rheumatoid arthritis, restrictive asthma and restrictive lung disease this past year.

With all that said, I’m a survivor. I’ve dealt with pain my whole life. I’ve always pushed through. I’m the person everyone relies on. I’m the caregiver of the family, like most moms. I’m on so many meds now and it’s starting to take its toll on me. It’s getting harder for me to walk, type, or basic things that others take for granted. I’ve had to go part time at my job and waiting on my disability.

I’m blessed with such a supportive family and friends who help me and totally understand when I have to take it easy. I have a beautiful granddaughter that is my heart, she keeps me going. I have other relatives that suffer from Fibro and arthritis including my mom and son. It’s so much harder for me to see them in pain. My faith is strong and is what really gets me through it all. At my lowest I just turn on my worship music and focus on God. I also love to color now, it’s very relaxing. I’m learning to focus on me and my health now because I want to be around for my family. I hope by sharing this others will know they are not alone.

February 25, 2016June 21, 2019

Spoonie Story: Jen

Hi my name is Jen, I am 29 years old and I have an 8 year old autistic son.

I was diagnosed with endometriosis when I was 20 and fibromyalgia just recently. I’ve had 7 surgeries including a complete hysterectomy & an appendectomy due to the endometriosis.

Every day is a battle with my hormone medication & my fibromyalgia. I now have gastrititis, gastroparesis & acid reflux. I used to be very active and now I have to rest often. I try not to allow my invisible disease pull me down.

Last year I went through severe depression but realized that’s not who I really am so I decided to get back up & keep pushing myself through life! If I can do it anyone can do it, find what motivates you!

February 24, 2016December 10, 2019

Spoon Theory Explained

The spoon theory explains how to cope with chronic illness using spoons as a metaphor for our limited energy supply. It was originally written by Christine Miserandino. You can find the original article here.

People who could relate to the spoon theory started to refer to themselves as spoonies. A spoonie is a person with an invisible illness or chronic pain.

Here at The Unchargeables we use the battery analogy to explain our limited energy levels.

The original article explaining the battery analogy can be found here.