My journey with… Endometriosis

Sharing real stories is at the heart of the My journey with… interview series. I love being real on this platform and giving other women the chance to do the same knowing that our authenticity is helping others who find themselves struggling or going through something similar.

Finding solidarity and realising you are not alone is one of the very best things about the internet and I’m glad my blog can play a small part in that!

Today it’s the turn of Siobhan Yeatman to share her story about her journey with endometriosis.

I have endometriosis – a chronic inflammatory disease where tissue similar to the endometrium (tissue that lines your uterus) grows outside of your uterus, most often on your ovaries, fallopian tubes and the tissue lining your pelvis, as well as around or on organs in the pelvic region. It can be extremely painful, and cause chronic pain, chronic fatigue, a lowered immune system and infertility, among many other health issues.

My journey with Endometriosis has been a long one. I waited for many years, telling my gynae that I felt something was wrong with my body. I had painful, heavy periods, and after being put on the pill in Matric (2004) for my acne, these lessened. After 4 years though, it would start up with every 3rd month or so the pain being worse, and this increased to a point where every month I was in a lot of pain, and popping Myprodol like they were candy.

In 2016, my gynae eventually agreed to do a laparoscopy and take a look around, and lo and behold – I was at stage 3. Endometriosis has 4 stages of intensity. Stage 1 is minimal (a few implants, lesions or inflammation on or around organs surrounding the pelvis), stage 2 is mild (more of these implants or lesions than stage 1), stage 3 is moderate (many deep implants on and around organs) and stage 4 is severe (where it affects several organs in the pelvic region and ovaries).  Stages 3 and 4 typically include cysts and more severe scarring.

Since 2016 I’ve had 2 surgeries, have tried multiple courses of a progesterone drug called Visanne (which left me severely depressed and gaining weight rapidly) and a 6 month course of Zoladex implants (which are hellishly pricey, and put you into a menopausal state in the hopes that the endometriosis will shrink away).

None of the hormonal treatments have helped, as the endo has come back each time, which resulted in my second surgery.

The impact on my life has been an up and down rollercoaster of hormones, intense pain, surgeries that have caused extreme anxiety and days where I’m so sore and tired and emotional that I just want to stay in bed until it goes away.

 

Now that you have the benefit of hindsight, is there anything you might have done differently before, during, or after, your tough life experience? 

I wish that I’d gone for a second opinion sooner.  I sought a second opinion from a different gynae in 2017 and he has been an absolute dream. He appreciates that I haven’t just asked Dr Google for advice and come to him throwing that in his face – I’ve put in real research on the disease and read a number of books on it. I like to be as fully informed as possible, as it gives me an element of control I wouldn’t otherwise have.

 

What, or who, helped you to overcome or push through this experience? A book, a person, an incident, therapy, medication or was it just simply time?

My mom and my husband have been especially wonderful, and really helped me through it in many different ways. I know that medication will probably never be the answer I need and have decided against any more hormonal treatments. But my gynae has been an absolute dream – he listens to me, REALLY listens (an amazing thing, in this world where any kind of pelvic pain is brushed aside as ‘female problems, and completely normal’), he has long conversations with me about the information I’ve read, and offered his thoughts on the disease.

 

Obviously there is not always a reason for going through such hard times in life, but now that you have come out the other side of the “tough stuff” (or are further down the journey) can you share any insights or personal growth that the experience taught you? 

I’ve learned to listen to my body. If something feels off, and has gone on for a period of time (as opposed to a quick once off), then something is wrong. A woman knows her own body, and has a certain intuition when it comes to how her body works. I’m also learning ways of coping that don’t involve medication – I try to only take pain killers if it’s ABSOLUTELY necessary, so hot packs and the like are my best friend.

I’ve also found that the whole endometriosis topic gives me quite a lot of anxiety (to the point where I came round from my second op and in recovery was thrown into the worst panic attack of my life, and had to be sedated again) – but I’ve found relief from this by talking about the disease and sharing my journey with it.  I have a full blog post on my site, where I explain the disease for what it is, and discuss my journey with it, where I update it from time to time. It’s one of the most-read posts on my site, and I often have followers on my social accounts reaching out as I’m outspoken about my struggles. By helping others, I’ve found a way of coping with the anxiety.

#thisisendometriosis – an instagram campaign where women around the world took a photo of the scars on their abdomens to show the years they’ve been dealing with the disease – this was prior to my second surgery.

Where do you find yourself now? 

I had my second op a year and 4 months ago, and I know that the endometriosis is already back in action. From here my plan is to wait it out until I can’t handle the pain anymore, and my gynae has told me he has the name of another doctor who has a different method of surgery that can help more permanently. I am hoping this is the method I’ve been reading about (excision surgery, over the more often used ablation, which I’ve had twice).  I’ll then consult this doctor or a specialist about my next steps.

Endometriosis is more common than we might think – 1 in 10 women is likely to have it!  Yet for some reason, the disease is not highly researched, not prioritised on medical schemes, and not fully recognised by doctors. Those of you struggling with any of the symptoms should be checked out, and if your doctor refuses to do so and says what you suffer from is ‘normal’ – find a new doctor. I’ve also joined 2 support groups on Facebook that are so amazing, women who share their experiences with the surgeries and the medications, who share their ups and downs and stand together as women should.

I’d LOVE to organise a march for Endometriosis in KZN, but it’s quite an undertaking and one I just don’t have time to fully commit to with everything else I have on.  We have no official movement here in KZN, but I know that the Western Cape does!

For more information about endometriosis and Siobhan’s journey plus a reading list of material that is useful visit this post on her blog: https://www.sugarspicelifestyle.com/2018/03/endometriosis-my-story/

Kathryn Rossiter

Kathryn is a South African lifestyle blogger and mom of 2 who has been blogging daily for over 9 years! She writes about travel, health, beauty, fashion, decor and family... but not food (unless it's food she's eaten made by someone else) as she is a hopeless cook. She only wakes up early for 2 things... a red-eye flight to somewhere exotic and early morning game drives. She has just finished an extensive home renovation and would prefer to never see another box again. She's never met a chocolate or glass of bubbles that she didn't like!

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