What you need to know about Endo

13 letters, 6 syllables, more than 10% of Australian women affected.
And yet, there is still so much unknown about the disease and no cure for those suffering either. Endo is something I honestly feel like I had never heard of one day, and the next I needed two hands to count how many people I knew personally who were battling the cruel condition. Like so many of us, I knew nothing about it. So I began lightly researching it, and hearing the extreme levels of pain and lifestyle challenges these women face not just monthly but often daily is heartbreaking. It’s not just a ‘once-a-month-lady-problem’ kinda thing. This bitch attacks your body, your abilities and your emotions, which takes a toll on your lifestyle, your relationships and can quite easily take over your life. With the added pressure of affecting family planning dreams and the extra twist of the knife that there is no known cure. See why I’ve nicknamed her ‘the bitch?’ #endosucks

I can appreciate textbooks and webpages stacked with info, but the common factor here seems to be that it does affect everyone differently and then treatment is found differently for everyone too. If found at all. So I decided to ask a few girls close to me to share their own personal experiences with it in hopes it may not only educate the rest of us to get to know our bodies more and care for them as best we can, but to also ensure we are aware and supporting those suffering around us the very best way we can. Knowledge is power, but it is also comfort when it is shared.

How old were you when you were diagnosed?
E – I had my diagnosic laproscopy at 27.
T – 21.
C – In high school, from the first time my periods started at the age of 14 they were a nightmare. Also my mum suffered with it, so it was easy to diagnose.
E – 25.

How old were you when you first noticed signs/symptoms? Even if you didn’t know at the time that they were actually Endo related.
E – I first started getting really painful periods when I was about 16, they were super painful and heavy.
T – I went on birth control at 15 as a way to control my period pain (no mum I really wasn’t having sex!) 
C – Terrible, heavy, painful periods. Very low iron levels, regular iron and blood infusions. Every month my periods would go for 10 days from start to finish. Most months my mum would pick me up from school due to constant flooding and discomfort. In my later years they ruled my life, I would spend at least the first two days house bound just trying to stay off my feet.
E – 25. The thing that threw a lot of gynaecologist and doctors was that my periods were so normal. Even when tracking on an app, if my period said it was coming on one specific day, it was there. I had such a tummy ache that is indescribable – it literally took my breath away. Every night for a week I would wake at about 2-3am with excruciating pains. I would dose myself up with pain killers and then eventually fall back asleep. I had some pain during sex but didn’t question why or what it was. I have always had such heavy periods with a lot of clotting, which I thought was “normal” for a period. It was normal for me to take a day off from work for the pain also, which again, I thought was normal. When I had my period, the cramps were so bad it would make me vomit, I’d break out in cold sweats and nothing I could do would take away the pain.

What did you know about Endo before you were diagnosed?
E – I honestly didn’t know anything until my gynaecologist told me they thought I might have it so I googled it like crazy.
T – Absolutely nothing!! I had never heard the word before and asked my doctor to write it down so I could google it! 
C – I knew of it well due to mum having it her whole life. However, like now it still wasn’t/isn’t talked about and the main “fix” for it was the pill.
E – Absolutely nothing! I was aware of PCOS (Polycystic Ovary Syndrome) somewhat and knew a lot of people suffered with that, but not Endometriosis. I understood that people had cysts on their ovaries which normally lead to surgery but in no way, shape or form did I understand the severity of it. 

How did you typically deal with your pain and the condition itself, or what have you tried to combat it with?
E – My normal go to for bad flare ups are pain meds, a heat pack, my TENS machine and to not move from my bed.
T – I would take a lot of different pain medications in different combinations as I needed to increase my pain relief. I also used heat pads/mats constantly and would have a really hot bath to help also.  The most helpful medication I was on was Zoladex – an injection that put your body into a medical menopause. Obviously not the greatest. The injection was so large my gynaecologist would inject local anaesthetic first before inserting the Zoladex and I had this monthly for 6 months as it’s not approved for longer use. During this time I was warned that I may have all the side effects someone going through menopause has, and so I resisted going for this treatment for so long because of the side effects and then while on it I was the healthiest I had been in years! Once finishing this treatment my Endometriosis was managed well enough that I had an IUD (Intrauterine Device) inserted and for 5 years I was able to manage my Endometriosis fairly well! I only had this removed when we were ready to try again to have children, and have had a new one inserted 8 weeks after the recent birth of my babies. 
C – The pill was prescribed as a bandaid solution. I took it from the age of 14 as it initially allowed me to skip my periods every second month to give my body a break. Yet over time the skipping of periods no longer worked and it would always break through. I visited lots of naturopaths and took plenty of pain relief, but mostly just dealt with it being a part of my life. No one ever really offered solutions until I was perhaps 17 and the option of a laparoscopy to look inside was actually put on the table.
E – Pain killers, Panadol, Nurofen – anything! Massaging on my tummy, anything I could handle at the time. Hot water bottles, heat packs, scrunching myself up into a ball – crying was probably my most normal way of dealing with the pain. I do however feel I was super lucky compared to some others, and only had that direct pain during that week before admitting myself to A&E.

Any surgeries/procedures you have gone through? If so, any success or results from these?
E – I had my diagnostic Laproscopy in February 2019 where they removed some Endo but because they weren’t a trained Excision Specialist the pain had come back just 2 months after surgery. So I have to have another surgery at the end of the year.
T – I have had 2 laparoscopic surgeries and had my first mirena (IUD) inserted while under anaesthetic in a hospital.
C – Plenty of trips to the gynecologist in my later years and even still now to discuss options. No procedures as yet (my choice) as I was aware that it was likely it would grow back. From a young age I was told having a baby would be great for me, as it often clears out Endo, plus knowing that I always wanted children I looked forward to the day that Endo would be behind me.
E – I had my surgery on January 10th 2018. Months of tests, ultrasounds, X-rays and appointments finally lead me to the outcome that I had “suspected” Endometriosis and the only way to confirm was via surgery. I was categorised as a stage 4 patient (the worst). I had what they like to call “chocolate cysts” which are cysts full of blood. I had a 9cm cyst on my left ovary, slightly pushing on my bowel and a heap of smaller cysts forming on my right ovary. Recovery took me a while, I was in hospital for 2 nights and had 5 and a half weeks off work (based on my position and heavy lifting being hard to avoid) I don’t get the excruciating pain that caused me to start having tests anymore, but my periods are still super painful and super heavy. Still to this day I have check ups and internal ultrasounds to ensure this hasn’t come back.

If you have tried to fall pregnant during this time at all, how has it affected this? 
E – When I tried to fall pregnant before I was diagnosed I had to go through fertility treatment as I also have PCOS and so I needed help ovulating. After my next surgery I’ll know whether I can do that again or have to go and do full blown IVF.
T – I was only able to fall pregnant with IVF.
C – My first child took around 18 months to conceive, with one possible miscarriage prior – I didn’t realise I was pregnant and with what was described to my doctor at the time it was a likely early miscarriage. Now miscarriage is something that happens more often than talked about so it’s hard to know if my Endo played a part. 8 months after this I fell pregnant and had a very normal pregnancy.
E – We have been trying for a while now. To cut it short, it hasn’t happened. I knew this would always be an issue or would be harder to fall pregnant, I was warned. We are currently running tests to see if the Endometriosis has returned and whether that is why we aren’t falling pregnant. I knew it was always going to be hard, and so my fiancé and I have had the conversations about exploring other options and we’re totally open to them all. With time, we will know what’s best for us. 

If not, how does it weigh on your mind for future family plans?
E – It’s hard, as I have had 4 miscarriages already and worry it will be even harder to fall pregnant again and if I’ll get constant pain the whole time.
C – My periods returned about 8 months after my first child was born. I was hopeful for some relief, but they were in fact worse than ever. They came  twice a month and I would only have a weeks down time in between. They were more painful and heavier than I remembered. They seemed harder to deal with now that I was a mum too and I just got to the point where I was not coping with them. I had more iron and blood infusions and sometimes wondered how I was still alive. My doctor and I discussed a hysterectomy – it was not a discussion taken lightly, and she suggested before going down that road I try Mirena. Thankfully I had great success with this and my periods were mostly non existent in the first 2 years. In recent months however I have noticed a change and I now suffer from large ovarian cysts and am unsure as to what the future holds in that area.

What do you wish others knew about Endometriosis?
E – I wish that they knew that it’s not in our heads and that we aren’t drug seekers like a lot of doctors make some sufferers out to be. I also wish they knew that even once removed the Endo will continue to grow back throughout our lives and will require multiple surgeries. And also I want people to know having your uterus removed won’t cure you nor will have kids cure you either.
T – It’s not ‘just a bad period’ it’s debilitating. I was taking codeine every 4 hours during peak times and was constantly taking other medications like Nurofen or Naproxen fairly well any other time.  Before I found a treatment plan that worked for me (oh yes just because it works for 1 person it may not work for another because this disease is evil like that!) I had no social life and very minimal close friends. I would only have enough energy to go to work and then would crash for the rest of the day. It was a very isolating and lonely time for me as it took approximately 3 years to find a treatment that really worked. 
C – Just how debilitating it can be. All the times of leaving school or having to go home from work I was made to feel like I was making it up. Sometimes it’s hard to explain something until you go through it or know of someone who goes through it, but it is very real and also very unknown. Painful, heavy periods are not normal. Be sure to get checked as there are more options now than ever. Don’t put it off.
E – The pain! If you have heavy periods and they are causing you to constantly take time off work – go and get checked. Push until you have had every test possible. If I had have had a bit more insight into what it was, my cysts possibly wouldn’t have grown as large and I could have avoided a lot earlier on. 1 in 10 women are affected by endometriosis and it is definitely not advertised or discussed enough. It doesn’t just stop after surgery. Plus there’s the emotional side too. Every month is another reminder that we’re not pregnant or that something is holding us back from being parents. That is a feeling I would not wish on anyone. Please speak to your GP if you feel something isn’t right. 

Any further notes you wish to include?
E – A painful period isn’t normal. If anyone suffers from a painful period please go and see your GP and get the ball rolling. It can take years for some people to get an answer. 
T – If you’ve just been diagnosed or think you may have Endometriosis reach out to someone you know also has the disease! I’ve always been very open about it and regularly have girls contact me to vent or ask questions about how I managed my disease and I know the ladies who supported me through my diagnosis were true angels that saved my sanity!! 
C – You are not alone.
E – Trust your gut instinct – if it doesn’t feel right, it’s probably not right. Don’t be ashamed to tell people and educate others on what you’re going through or how you’re feeling. Be open to having that conversation. Be prepared for the future and be open to not having everything run as smoothly as you have had planned for years.

As you can tell, a frequent tone in the responses is about not knowing much prior to diagnosis, to not wait and also push for tests and more options of treatment – so please take this as the encouragement to get checked if you are concerned and follow up everything you need to. The other common notes are just heavily it has affected their lifestyle, the difficulty of treatment, disbelief from others of severity and also compromised pregnancy plans – so please take this as a reminder on how we can best connect with those we know are navigating through their own Endometriosis journey, consciously support them and love them the way they need it most.

For further information, feel free to check out Endometriosis Australia.

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