Stories of You

Endometriosis

For one in ten women there is no cure. For one in ten women the misunderstanding is greater than the understanding. For one in ten women endometriosis is part of their every day. Endometriosis not only cripples the sufferer, but the relationships, families and extended lives they are part of. This is Linh, Marita and Teneille. They are one in ten women who suffer from endometriosis. These are their stories.

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This is Linh. This is her story.  

Two years ago at the age of twenty seven the pain became unbearable. I was crippled in bed for days with no sleep. I have a pretty high pain threshold, but this pain was like no other. Living in the era of Google, I stumbled across an article about endometriosis which mentioned extreme bowel pain while going to the toilet during menstruation. This was exactly my symptom, but I was so embarrassed to even mention it to anyone. Finally I decided to see my GP. The first ultrasound showed some scarring around one ovary and venetian blind shadows in my uterus. Diagnosis was possible endometriosis and adenomyosis. My GP said the only hundred percent diagnosis and treatment was through endoscopy.

I became obsessed with finding out more endometriosis. I didn’t feel alone or ashamed after reading countless forums and watching YouTube clips. I felt the need to tell everyone about it, especially those that thought “oh it’s just a little pain – deal with it or pop a pill.” There were still doubts in mind: what if they don’t find anything after surgery? Am I making a fool of myself? I decided to do another ultrasound at a different GP and nothing showed up. I was relieved but also disappointed at the same time. Maybe I did have to man up to this monthly pain?

When I got a call from the hospital saying they had a last minute opening for my surgery I took it without hesitation. I checked in expecting to be home the next day as it was only day surgery. I ended up staying for three days recovering. There was so much endometriosis scar tissue built up. My bowel was completely glued to my uterus which they had to separate. It took me two months off work to fully recover. At my six month check-up, I did ask the question about lifestyle change to prevent it re-occurring but the doctor said there really is no way to prevent it. Very little research is done so the how and why questions were never really answered.

After my surgery the pain had completely gone! RELIEF! It’s not guaranteed the endometriosis is completely gone, but I don’t really think about it anymore. I know I still have adenomyosis which may be affecting my ability to bear a child. Not much can be done about this except a hysterectomy which certainly is not on my list. I try to live my life trying to be as positive as I can in hope that a miracle will happen one day.

I just wish more people knew about endometriosis. That way the women that do suffer from this debilitating condition don’t get judged as being “weak” or a “sook” just because of some little “period pain.” Living with endometriosis, you can try to explain the pain to others but unless you have it, no one really knows what you go through every month, even the pain during sex.

My GP was astonished that I was able to deal with this pain for so long. I wish I had spoken up earlier and was treated sooner. People should not be ashamed of endometriosis and no one should be living in pain.

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This is Teneille. This is her story.

I was nineteen when I found out I had endometriosis. Being a silent disease I discovered it may have started to evolve when I was sixteen. I had a great deal of pain, mostly feeling like intense period pain. I was tired, irritable and always bloated. Sometimes the pain was so severe I couldn’t walk, it felt like knives jabbing through me. It was extremely frustrating. I went through a great deal of stress from the unknown, so did my family and boyfriend at the time that bore the grunt of my emotional roller coaster.

I had numerous tests but nothing was found until one day I underwent key hole surgery where the endometriosis was discovered. I was somewhat relieved when I was finally diagnosed.

Once the diagnoses I couldn’t get an appointment to have it removed until six months later. In that time, it grew so much that once I had the surgery the doctor pointed out that it was 1mm off the bowel. The doctor informed me that I was very lucky as they couldn’t cut or burn the bowel which meant I would have had to have a hysterectomy at the age of nineteen!

After looking at the photographs from my surgery and hearing all about the results I was quite scared and upset, yet I immediately took action to find out more about the silent disease. Reading up on it and finding out that it was very common in women put me at ease.
I always had a good diet and exercised regularly but this made me more aware of how I can help heal my body from within. I realised earlier on and with more knowledge now that certain foods help trigger the pain and bloating. With this in mind I made more of a conscious effort with my diet.

The one thing that changed my life mostly after the surgery was my energy levels and the comfort I felt in my body to get up and do things. The pain no longer interfered.

It would be ideal if society didn’t see endometriosis as irritable bowel syndrome. Yes there are some similarities on the outside appearance, but endometriosis sufferers are dealing with something totally different.

As daunting as it can be hearing you have endometriosis it is good to get in tune with what your body reacts to. I found I was able to control my symptoms with a holistic approach which made me feel a whole lot better.

I have learnt that all women have different cases. Some of us it grows back, others it can go after the first surgery. Unfortunately I have had it removed three times. It grew back two years in between each surgery all at different rates and different areas. My last surgery revealed a more aggressive growth than the first. I had my last operation at age twenty four, I am now twenty eight and with my lifestyle changes I have managed to keep my endometriosis under control. I still get the symptoms from time to time but thankfully at this stage not severe enough to undergo another surgery to have it removed.

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This is Marita. This is her story.

I was thirty one when I visited my GP as my body felt a little out of sync. A snowball of scans and tests followed. None of which answered why I was feeling this way, so I was referred to a gynaecologist. Within five minutes the gynaecologist had me booked in for a laparoscopy. I thought they would find nothing during the laparoscopy. Turns out I have stage 2-3 endometriosis.

Looking back the signs were clear. Four years ago I started to notice odd abdominal pain. One time the pain hit a crazy new level I was crippled over on the floor in agony for hours, unable to uncurl myself. My doctor brushed this off as a cyst that had popped with no further investigation. My period pain had stepped up to a crazy new level of bad. The first few days would be so painful that it felt like a grey cloud come over me and I wasn’t able to think/do/be. I just wanted to sit, curled up in a ball in the corner of the couch. I felt extreme ‘period like’ pain the weeks between my periods. I thought all of these symptoms were normal and never complained about them.

During the laparoscopy they removed some of the endometriosis. However, a significant change of diet is what I feel has worked for me in trying to manage my endometriosis. I am still learning and figuring out what is a good fit for me. It was a relief finding out there actually was a reason behind all that the pain I felt. Now I am trying to be more self-conscience of my body, what I do and what I put into it.

I have quickly learnt that every single case of endometriosis is completely different. No one is the same. I think it is important to not go by the book, but to listen to your body and figure what works best for you. The black and white reality of living with endometriosis is that it is hard and unexpected. You will have good days that make you question your bad days, and then you will have bad days that make you question the good.

For me now, I am terrified to go through another laparoscopy – so I will do anything to prevent the pain and growth by a healthy and active lifestyle. I have chosen to stay away from medical treatment as much as possible (within reason) as I do not want to get to the point where I turn to this every time I feel pain. I am on the pill on a three month cycle: three months no period to try and give my body a break.

Endometriosis is an internal battle and one that cannot be easily understood by others. I feel that if I always voiced my pain and struggle, I would be complaining everyday – not fun for me or the people around me. I have the amazing support of my partner, family and friends who I don’t need to verbalise my struggle to and who just know when and how to be there for me.

Living with endometriosis is debilitating, frustrating and annoying, it is now part of who I am, but I will not let it define me.

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Next time you are waiting in line at the supermarket count the number of women, one in ten of those is suffering. At school pick up, one in ten of those mums is suffering. At the football on Saturday, one in ten of the women sitting in that stadium has a story just like the three told today to tell.

The social stigma that endometriosis is “women’s trouble” must lift. Research funding, conversation and awareness need to take place. Be part of the change, start your own endometriosis conversation. The story may surprise you.

Want to be part of the change, the conversation, the cure? Find out more at Endometriosis Australia.

I would like to thank Linh, Marita and Teneille for sharing their stories today. Heartbreaking stories that shed some light on a debilitating, if not crippling disease that has a strong hold over so many women in our society. My first endometriosis conversation was with my sister, she changed my perspective, she is the reason I wrote this today xx

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  • I had no idea it was so common. Thank you for sharing these stories, and raising awareness. So important. X

  • Such a little known condition which we need to raise awareness for. Thank you for sharing your stories ladies. x

    • It really is something we need to raise awareness for and shed new light on those who suffer from this xx

  • Ladies, thank you so much for sharing. I truly hope that one day you can be pain free. I’ve also had endometriosis removed, but it was not on the same level as you describe. I’ve always had incredibly bad period pains. I can only imagine the level of pain you must have or still are experiencing with endo at a stage 2 – 3. Someone very close to me had surgery to remove her endo recently. She had a similar situation to Linh where it was completely covering her bowel. She has now just given birth to twins 🙂 Thanks again ladies and Josefa for telling your stories.

    • What a great ending – twins! I have found that the moment I started asking and talking about endo it seems that everyone has a story to share or knows someone with a story to share xx

  • A family friend is about to have her second child. She’s looking forward to the first 12 months after birth as she believes she’s likely to slide back down into the debilitating pain of endometriosis after that. She’s had it so severe she’s been on a disability pension and strong drugs and has been unable to work. It’s just awful. Thank you for sharing these stories and raising awareness. #TeamIBOT

    • That is just awful Bec, so sorry for your friend that she must live in this kind of pain xx

  • Amazing, with a close friend battling this silent disease I had not understanding or knowledge of it until then. Thanks for sharing and putting these stories forward! Visiting from #IBOT 🙂 x A

    • I think so many of us fall int his situation – we know nothing about it until someone we love falls with the disease xx

  • I didn’t know much about endometriosis until I had friends start to try for a baby. I’ve learned so much more from reading this post. Thank you ladies for sharing your stories. More needs to be done to find a cure or at least work out how to prevent it. Women should live pain free. I can’t believe how young these women are who suffer in silence. Xx

    • They do suffer in silence Bec and I think that is the heart breaking part – I know a cure is always in my prayers xx

  • Natalie @ Our Parallel Connect

    This makes me feel normal. I didn’t start to get endo until after I had children. It seems to grow every couple of years and then the pain begins again. I wait a while until I can’t handle it and start the process all over again .. Great blog Josefa

    • Oh that is terrible to hear Natalie, many think that having children is a solution to endo – just goes to show how much more awareness needs to be raised an solutions found xx

  • Good on you for telling the stories Josefa. I’m also glad there seems to be more accurate diagnosis these days. When we were going through infertility I seemed to have this mixed bag of symptoms (and hubby had ‘issues’ too) that they couldn’t seem to put their finger on. Some issues with tissue growing on my uterine wall (but not really an endrometriotis diagnosis) some issues with egg quality, some issues with sperm quality. In the end the sum of the issues, and who knows what else, meant we didn’t have a successful pregnancy, but as you know were are lucky to have our two beautiful children through adoption.

    • Oh it can go around and around in circles for a very long time sometimes. Infertility, endo….the list can go. I am so happy that your story has a happy ending Kathy – two beautiful children and one beautiful family, true blessings xx

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