Years of pain. Finally a diagnosis at 39. my endometriosis story.

I’m 39 years old and just 3 months ago I discovered I have endometriosis. Years of painful periods, seeing doctors and specialists… and only now do I have an actual diagnosis. I feel emotional writing that, because I can’t believe it’s taken this long; and unfortunately I don’t feel like this is the end of it.  

I’ve felt a bit torn about writing this blog post. One part of me doesn’t want to write about my experience with endometriosis because I don’t want complain. I don’t want people to think I’m being an attention seeker or want people to think ‘poor me.’ That’s not the case at all. 

But on the other hand, that’s kind of the problem. Many women don’t speak up about it because they’re worried people will think they’re just complaining, whinging, over reacting, etc. They don’t want to make a fuss. They don’t want to risk people not taking them seriously.  BUT by people not talking about it, there’s a lack of awareness that endo is a thing. There’s people not realising that they have endometriosis and they’re suffering in silence (like I was).

It’s because of people sharing their stories, that I’ve now had a laparoscopy and have a diagnosis. So if me sharing my story via this blog post, helps even just one person realise that maybe they have endometriosis and it prompts them to get checked out, OR if someone’s been suffering in silence and has felt like no one understands what it’s like for them, yet my story resonates with them and they feel seen and heard, then I’m happy I’ve taken the time to write this blog post. 

Before I dive in and share my story, I do want to preface that I’m not a medical expert. Anything I share in this blog post is simply my experience, it’s not medical advice. This is also simply my interpretation of what’s unfolded with my endometriosis diagnosis.

If you’ve read any of my blog posts in the past, you’d know that I write directly from my heart. I’m an open book. So here’s my story… my experience with endometriosis, which I believe started as a teenager.

I was a late bloomer. I think it was about year 9 at school that I got my first period. I remember that I wanted to get my period so bad because all my friends had theres. Little did I know what I was in for.

I don’t recall my periods being horrendous right from the start. I think it took a few cycles for my period to find it’s rhythm. However, before long, I do recall being at school, as a teenager with very heavy periods. I would have to wear a tampon and a pad. I would rush to the bathroom with some close calls because both the tampon and pad would be full. 

I remember the heavy periods at home too. I’d have to get up during the night to change my pad because it would be flooded. I’d be half asleep and trying to not get blood everywhere. I recall one night, I got up to change my pad and I had to walk past mum and dads bedroom to get to the bathroom, and just as I walked past their room I said ‘I don’t feel good’ and next thing I fainted. 

It wasn’t just the fact that my periods were heavy though. They were also painful. It felt a bit different to the pain I get these days though. It was more sharp pain and lower back pain. I have memories of sitting on the couch watching TV, and I’d feel sharp pain shooting up my backside (yep, it felt like I was getting zapped up my bum) and I would freeze in pain. Only in recent weeks whilst researching all things endo, I’ve seen women refer to this as ‘butt lightning’. As soon as I saw that term, I knew exactly what they were talking about! That was the pain that I would get. 

I think it was not long after the fainting incident that mum took me to see a doctor. The doctor suggested I take the contraceptive pill to help manage my periods. I took the pill for a few months and it still wasn’t helping. The doctor then referred me to a gynaecologist and they advised that I get an Implanon in my arm, to stop my periods altogether. At the time, it sounded like a genius plan to me - no period equals no pain or heavy bleeds. In fact not getting a period at all just seemed so much more convenient for life in general. 

I had 6 years of no periods. Well close to 6 years. An implanon steadily releases hormones for 3 years. After the three year period, you need to get a new one. I have 2 scars on my inner arm where the implanons were inserted and removed. Towards the end of the third year of having the 2nd implanon, I remember I started getting my period again and getting it more frequently than just once a month. This prompted me to go back to the Doctor and they removed the implanon and suggested I take the contraceptive pill again; so I did.

I don’t recall my periods being super painful around this time. In fact, it’s all a bit of a blur. However I do recall getting to a point where my interest in health and wellness was growing. I was a Personal Trainer and had taken a keen interest in improving my health & wellbeing. Some where along the way, I’d decided that I didn’t want to be on the contraceptive pill. I wanted to be more natural and let my menstrual cycle do it’s thing by itself. Plus I didn’t really understand ‘why’ I had bad periods. That was never really discussed. The focus was always more on managing the symptoms (I don’t recall the possibility of endometriosis ever being mentioned).

So I stopped taking the contraceptive pill, and it turned out it wasn’t as simple as just stopping the pill and then getting my cycle back. It took up to a year for me to get my period back and have a regular cycle again. My memory is still a bit of a blur with what my periods were like at this time, but I never remember my periods being a joy. When ever I think of my periods I only ever think heavy and painful. What I do recall though, is feeling more like myself again. I felt more outgoing when I was ovulating. I could tell when it was leading up to my period. I was much more in tune with my cycle, which I loved. The best way to describe it, is that I just felt more like myself.

I’m currently 39 years old, and for all of my 30’s I haven’t taken any hormonal contraceptives.  My periods in my 30’s have generally looked like this… Day 1 of my cycle (the first day of my bleed), I basically need to load up on nurofen and nap on the couch. I feel exhausted, nauseous and have pain in my lower tummy. I curl up on the couch with a blanket and hot water bottle and fall asleep. Waking up from my nap, I generally find the nurofen has kicked in. The pain isn’t as bad, I don’t feel as exhausted and I can get on with my day. 

A couple of years ago, I remember it was day 1 of my cycle and I’d planned to drive from the farm house to Adelaide. This meant not resting on the couch. Instead I got in my car and started driving. I got about 5-10 minutes down the road and I felt sick. My period pain was horrible. I felt myself go clammy. I broke into a sweat and next minute I started getting dizzy. I pulled over and focused on some deep breathing. After a few minutes the dizziness stopped and I turned around and headed for home. I got to the driveway, pulled over, got out of the car and vomited. 

I think the sitting upright was too much, hence why I always need to lay down for day 1 of my cycle. Since having a laparoscopy and discovering where my endo is, it kind of makes sense. Being seated can increase pressure on the pelvic area, particularly on the organs and tissues affected by endometriosis. I dare say that’s why I’d feel so much pain, nausea and in this instance, vomit (will share more details on this soon). 

I do wonder, if I wasn’t self employed, maybe I would have got checked out for endo sooner? Because I work for myself, I can take time out when I need; which in this case is every month. I can’t imagine what it would be like having to call in sick every month when you have your period - but fully understand this must be the case for many women with endometriosis. 

Another symptom I experience is fatigue. The fatigue in itself is debilitating. In fact just yesterday I had to lay on the couch and nap for an hour (this is 2 days after my bleed has finished). I can’t fight the fatigue. When it hits, I feel so exhausted that I feel nauseous and can’t think straight. I didn’t realise this is a common symptom of endo, and in the past I’ve often gone to doctors to get my iron levels checked because I could never understand why I was so fatigued when I prioritised my sleep and took good care of myself. I would get frustrated with myself and question if I was being lazy?

Another symptom of my endo is the heavy bleeding and big blood clots. That’s just not fun; and now since the laparoscopy I’ve discovered a heap of other things I was experiencing was related to my endo (I’ll dive into this shortly when I tell you what my endo report showed).

I’ve also learnt that anxiety and depression are common symptoms associated with endometriosis. These are also things I have experienced over the years. 

So now to share why I finally decided to get checked out for endo at age 39. In all honesty, I never really thought much about the possibility of having endo. I didn’t actually even know what endo was. I just knew that painful periods had something to do with it. I was so used to painful, heavy periods. It just become part of the norm for me. A day on the couch for day 1 of my cycle; load up on pain relief, nap and then slowly get going again (and I realise in the scheme of things, my symptoms would be a dream compared to what some women experience with their endo).

It was after a chat with a friend that’s a naturopath and nutritionist that I decided to get checked out. We were talking about how my liver is my weak spot and needs extra support, and that me taking pain relief for my period pain every month isn’t really ideal. She suggested that maybe I have endometriosis and it might be a good idea to get checked out… and if a laparoscopy could help it, then I wouldn’t need to take pain relief each month.

I still didn’t take action straight away. A few months passed and I knew I should book in to see a doctor, but it just felt like another thing on my ‘to do list’, and I guess I was so used to my period being the way that it was, that it just seemed normal to me. I didn’t know any different, so there was no sense of urgency. However, I did finally book in to see my doctor.

I saw my Doctor and said to her that I think I have endometriosis. Her response was, ‘would you like me to write your script for some strong pain relief?’ I said, ‘no, I’d actually like to get an actual diagnosis so I know if I do actually have endo, and what’s going on.’ She was very obliging and talked me through what we can do and referred me to a specialist.

There was a big wait to get into the specialist, but I finally saw them and she was lovely. She asked me questions to get an idea of my symptoms and asked what outcome I wanted. This lead to me booking in for a laparoscopy. Thankfully I have private health insurance so I didn’t have to wait long to get in for a laparoscopy. I was about to have my first ever hospital visit, and the specialist suggested I stay in over night because I live by myself and wouldn’t have anyone at home with me post surgery.

I clearly remember the day I was having my laparoscopy. I was in theatre; they were about to put me under and start the procedure. I was chatting to the assisting doctor and I said to her, ‘this might sound stupid, but I kind of hope you do find endo so this isn’t a waste of time.’ I think there was a part of me that also didn’t want to feel embarrassed; I hated the thought of getting surgery and them finding nothing. I realise that’s an outcome most people would probably want, but after years of painful periods, you don’t want to feel like it’s all just in your head.

Before I knew it I was back in recovery. I remember slowly waking up. I was pretty out of it, but the pain. Oh, the pain was horrible. Lower abdominal pain. A nurse said to me, ‘Stephanie, hows the pain on a scale of 1-10?’ I said about an 8 or 9. She then said, you’re screwing up your face, are you sure you’re ok? I then consciously tried to relax my face. I realised the pain had me so uptight and tense that my face was tensed up. I just remember feeling freezing cold aswell, so they put some heated blankets on me.

I then heard the surgeon talking to the nurses asking how I was going and saying that I had a lot of endometriosis and that they’d sent a couple of specimens off to the lab. I was half out of it, but remember feeling a sense of relief. Relief that I actually had endo (which sounds ridiculous, I know. No one wants that diagnosis, but for me, it meant I had answers for why I was feeling the way I was). 

The pain relief started to kick in and I could start to relax a bit. The nursing staff were so lovely. That was a real highlight of the whole hospital experience. All the staff, my specialist, anaesthetist, nurses, etc, they were all so kind and caring. They wheeled me back to my room and later that evening my specialist came in to see me. She smiled and said, ‘you must be tough.’ She was surprised at how much endo I had and the extent of it. She told me where the endo was, the symptoms that could cause me, etc. The symptoms she listed - I was like ‘that explains so much!’

Here’s what my report showed… well this is my understanding, in a simplified version:

• My left ovary was stuck to the side of my pelvis. The surgeon freed my ovary from where it was stuck and removed the endo tissue from the left side of my pelvis.

• I had a thickened peritoneum with endometriosis, especially where the uterosacral ligament connects to my uterus.

• My left fallopian tube was stuck to the back of my ovary due to adhesions.

• On the right side of my pelvis there was a thick deposit of endometriosis along the uterosacral ligament and extending across the pelvic wall (endo had affected both sides of my pelvis)

• My Pouch of Douglas had a thick deposit of endometriosis (an area between my uterus and rectum)

• Extensive thick deposit of endometriosis on my UV fold (the area where the uterus and bladder meet)

• A ureter (the urine tube) was surrounded by thickened tissue. The surgeon found it difficult to clearly separate the endo from the ureter; So she wasn’t able to get it all as it was too risky.

Safe to say that I had quite a bit of endo, and it then made sense why I had previously experienced hip pain, back pain, pain with bowel movements, bladder issues (a feeling of urgency & frequency to urinate), and of course the period pain and heavy periods.

The hip pain. That was something I’d experienced on and off for years. I even got X-rays of my hips done to see what was going on. Nothing showed up in the X-rays. They told me everything was fine, but I knew it wasn’t. Now I know why. The same goes with my back. There was a stage many years ago where I thought I wouldn’t be able to continue teaching yoga, because I had severe back pain and pain that would run down my leg. Again, I got X-rays and scans done. Nothing showed up. My surgeon said that my endo could certainly have contributed to that; especially given I had endo around my uterosacral ligament. 

Another thing… at the start of the year I saw the doctor thinking I might have a UTI because I frequently needed to go to the toilet and felt that sense of urgency to go. I didn’t have a UTI, so it was left and we didn’t look into it any further - it now makes sense given where my endo was. Plus that sharp butt lightning and the needing to lay down instead of sitting on day one of my period… the areas where I had thick extensive endo, it makes sense. Also explains the pain I’d get with bowel movements, especially during my period. The other thing is, I dare say my fertility is compromised. I haven’t tried to conceive, so I don’t know; but given where my endometriosis was, it wouldn’t surprise me.

As you may be sensing, it’s been a huge sigh of relief to understand why I had these things going on in my body. I’m very in tune with my body and there’s been things over the years that I’ve known aren’t right, yet scans, etc haven’t shown anything, so we didn’t investigate further.

As for the recovery post laparoscopy, 48 hours post surgery, I unfortunately had a severe allergic reaction to the Chlorhexidine skin preparation (you know that purple surgical wash stuff they put over your skin before surgery; it’s rare to have a reaction. Unfortunately, it turns out I’m one of those rare people). It resulted with my body being covered in little blisters. It was extremely painful and brought me to tears on a number of occasions; more so than the actual laparoscopy itself. 

Apart from that, the recovery from the surgery was no dramas. They do say it takes about a couple of weeks to recover, but I must say for me it was more like atleast 4-5 weeks. As for my periods post surgery… I had high hopes they would be better. Especially after so many women messaging me on Instagram when I was in hospital, saying how getting a laparoscopy has changed their life for the better; but unfortunately, at this stage… my periods haven’t improved.

I must say though, this morning I realised how my hip pain hasn’t been a thing, which is a massive win! My back pain hasn’t really been a thing either. Plus, the fact that I know I have endometriosis has been like a permission slip to be kinder to myself. To not beat myself up for feeling fatigued so often and needing to rest. 

I feel good knowing that I’ve had endometriosis deposits removed. I do hope that in time that will continue to help alleviate symptoms (well it already has with things like my hip pain). My understanding is that if I didn’t have the laparoscopy, the endo could have continued to grow and become more extensive, causing more organs to stick together, and could lead to more pain, organ dysfunction, and fertility issues. Yet in saying that, I’m also completely aware that the endo can grow back. Surely this surgery has slowed it down a bit though. All in all, I’m glad I had the laparoscopy and I’m grateful for how my specialist has helped me.

It’s only been just over 3 months since surgery, so I’m hoping it’s just that my body is still healing, and that in time, things will improve. I’m actively researching all things endo to see if there’s any changes I can make with my lifestyle, diet, etc. My understanding is that endometriosis is still a very unknown disease. They don’t know what causes it, and there’s no cure. There’s just treatments to try and help manage it. 

I whole heartedly believe the our bodies are amazing and capable of healing themselves, if they’re given the right environment (physically & energetically). I’m not giving up. Now that I know I have endometriosis, I’ll actively explore what I can do to help manage it. If I do find anything interesting that’s beens super helpful, I’ll perhaps write another blog post. But in the mean time, I hope this blog post has been insightful and perhaps opened up your eyes to what endometriosis can be like for some people.

If you’re reading this and have endometriosis, please be kind to yourself. If you think you might have endometriosis, perhaps book in to see a health professional and explore if you do. If you know someone that has endometriosis, showing some empathy can go a long way as you can often feel alone and misunderstood with this chronic inflammatory disease.

Thank you so much for reading my blog post. I know it is a long one and there’s still so much more I could share. Would love to hear your thoughts, experiences or even things you’ve found helpful in the comments below.