I am an oversharer, you already knew that but when you blog and offer up the lovely parts of your life I have always thought it's only right to be honest on the harder times too. But endometriosis was never one of them. It was too personal, too... let's say embarrassing even to share the details. However this week I have realised it's not personal at all and there are so many of us suffering this horrible, painful and life changing condition.
1 in 10 for that matter. That's the same percentage of people that suffer from diabetes and we have heard of that.
Endometriosis is a taboo subject and there is no cure as of yet.
I have loads of reasons I haven't shared, a big one being my job so forgive me for not going into the real detailed symptoms but what I will say is that you can find them here. The other main reason is Bella and Annie, how can I share my woes when I have already won first prize? I am aware so many ladies that suffer from endo struggle for that chance to hold their baby in their arms so I feel silly for talking about it when I have 2 in mine. But this is my journey (so far) and my hope that is maybe one person will feel a little less alone, relate in some way, be given a little hope and even share your experience with me too.
When I was diagnosed with endometriosis I had no idea what it was and left the consultants office to google it in a blur, half thankful that I got a reason for the severe stabbing, sharp pain I was feeling and half terrified.
I always had a 6th sense that I would have trouble having kids from I was in my late teens, the pains and cramps I had were really bad, I was diagnosed with IBS and heavy periods and then they disappeared for almost 3 years. Having no cycle played heavily on my mind when getting married and I brought up the 'would you still want to be with me if we couldn't have kids' conversation a few times (honestly I've an awesome personality 😜). My sister used to tell me that she would be my surrogate, we would laugh about it but it always left me wondering.
I would have went to the doctors explaining the extreme tiredness I'd feel and random, breath taking stabbing pains but some iron tablets and paracetamol and I'd be on my way. I began to feel silly going to the doctors so relied on heat patches under my clothes and painkillers.
Weeks before my wedding I ended up in hospital for 1 week with the most agonising pains, I had acute pyelonephritis ( a very severe kidney infection that causes scarring to the kidneys) and since this I have had very bad reoccurring kidney infections which now I know are due to the endo and the impact of how things are attaching together.
Bella was VERY planned (😊 faces made my heart jump and Colin breathed an exhausted sigh of relief when the two lines appeared) though when I did fall pregnant it took my very close friend asking me if I was sure that I definitely had 'a bug' to realise and do the test. I think I couldn't believe my lucky stars that it had happened. At this stage I had just thought I would have trouble but was never diagnosed.
It was only after I had Bella and was called for my smear test that concern was raised and I got referred to gyne, I paid to go private for the initial consultation and after a scan he advised a laporoscopy where it was confirmed I had endometriosis and large ovarian cysts, he treated and removed as much as he could at the time. He also told us how lucky we were to have conceived Bella naturally due to the amount of endo they tried to remove and that if I wanted more of a family I may have to have help. The problem normally doesn't lie on holding a pregnancy but getting pregnant as the endo blocks everything up so normally surgery which removes some of it is the best chance for a 'clear path'.
The surgery was on the 19th August 2014 and on the 19th September after wanting to gag at a morning cup of coffee on the last day of holidays I said to Colin that I thought I was pregnant and wanted to do a test... but being a typical Ballymena man he weighed up the probability and decided the €20 on a test was not worth it... 'not pissing money away' I think was the term.
When I got home I couldn't get a test quick enough, I think we barely got the bags out of the car before the positive test was shown to Colin but there was a lot of shock! Bella was 13 months old and this was not what we were expecting.
Now I know what you are thinking, how can I even talk about the struggles of endo when up to now it's been plain sailing with quick pregnancies and just some monthly pain.... I'm getting to it.
I was at my 8 week review appointment for my surgery with my consultant and when he asked how I was feeling and my reply was 'pretty sick as I am pregnant' he was really taken back. He worked out my dates and told me he would be able to scan me and should see the heartbeat.
I was so excited, I couldn't believe how lucky I was and lying on the couch I couldn't wait to see that flutter of hope on the screen.
But nothing. Just a round circle.
'I'm sorry, there is where the sac is lying but it's empty'
That's exactly how I quickly felt on the couch.
I was told to wait to miscarry but I would be booked in for a rescan in 2 weeks to see if it was too early days and a heartbeat would be monitored or I would need help to remove it.
Then I was reassured that this was very normal with anyone who suffers endo.
Why did I know so little about it then as when you type it in google what pops up is
Endometriosis is a common condition where tissue that behaves like the lining of the womb (endometrium) is found in other parts of the body. - NHS direct
So common?? But I've only heard about it and I don't know anyone else with it.
I left numb with no emotion. That was until I went to pick Bella up at mum and dads and broke down there.
The next day and back at work it was like a cloud over me. I tried to keep very busy in between the hourly rushes to the toilet to check. What also didn't help was the sick feeling, I put that down to just the total upset.
6 days had passed and while in work the pains got pretty bad, the vibrations up my body when walking especially on one side where consuming (just like the monthly pains I would get but slightly worse) so I rang the hospital local to where I was working and got an appointment for over lunchtime.
I let Colin know but asked him not to bother travelling up. I actually just wanted it over as even the tiny bit of hope I had started to fade. But Colin being Colin was there waiting.
I was in the hospital at 1:05pm and remember so well the clock in front at 1:10pm... there was no waiting about. The minute I was scanned there was the little blob with a strong heart beat that appeared back at me. Even typing that now my eyes are whelling up.
I don't think I've ever had a better lunch break in work, after I dried the tears of joy up I headed back in, instantly feeling so protective, I felt like this was my little golden ticket and I was holding on tight as the threat of loosing it was too real. Looking back though it's amazing the things women can juggle, I sometimes question my strength when I shouldnt.
Skipping forward from a pretty rough pregnancy with Annie, amazing birth and unsettled first year where I breastfed Annie for 19 months, I was doing this for so many reasons, it was the one thing that truly comforted her, I was back to work and it was hard on the both of us and I knew the longer I fed the longer that the hormone levels stayed low slowing the pace of growing endometriosis. Pregnancy, breastfeeding, the pill and the menopause are all ways that slows the development. The menopause ends it.
I had a regular smear test in March and I was actually really wanting it done, I had started to worry as the pains I was getting was intensifying, the bleeding was practically continuous and extremely heavy leaving me with constant paranoia, the tiredness at times was debilitating and well, let's just say that the pain was bad enough without anything else poking around there... (Dies of a total redner)
The smear results showed up abnormalities and I was lucky to have had private health insurance by this stage with my job. I was seen by a consultant pretty quickly, scanned that night where he identified my bowel looked like it was stuck to my womb, my ovary and tube was stuck to my womb and I had a lot of cysts. I was back up in the week for an MRI to check the cysts and thankfully the results came back benign.
I had the option to hold off for surgery and one that I took, maybe in hindsight that wasn't the wisest idea. I wanted to plan it better, I was busy with work and covering maternity leave so would rather have completely finished the work there and planned it in between one job and the next.... oh health doesn't work like that? Yup I got that reminder.
3 weeks later as I was driving home the most horrendous pain came over me, I stopped off home before collecting the girls to go to the loo where the pain was awful. I quickly got the girls and got back home, it had been a long day and I knew my mum was tired and Colin was at work so I didn't want to say to her.
In the car I prepped Bella telling her that mummy had a very, very sore tummy and I really needed her help. I am sure she heard the plea and quiver in my voice as I tried to work out how I could get the 2 girls ready and to bed.
Bella was a dream and took herself to bed the wee pet but Annie sensed something wasn't right and just played up. The pain became so crushing that I couldn't stand up or get my arms up to lift Annie in the cot, my phone was left downstairs and I knew I couldn't get down. Bella got me my phone so I could text my sister and ring doctor on call. My niece looked after the girls as I headed to the doctors with my sister before heading to the hospital.
I had another case of pyelonephritis and a burst ovarian cyst on top of that, the pain was so bad that night that if they said they would have removed it all to stop the pain I would have agreed. 2 nights in hospital with IV anti biotics and a scan to check kidneys etc and I was advised to go back to get the operation sooner.
I took the next date which was 4 weeks later and during that time I never fully felt 100% even walking and putting the weight on my right leg shot stabbing pains right up through me that would have made my eyes water and at times ears ring.
Even though I was booked for an operative laparoscopy my consultant was going in to try and remove the cysts, endo and treat as much as he could, with a lot of cysts around one of my ovaries I knew there was a chance I could loose it.
I was lucky and the surgery went well however they did have to remove a lot from around my organs, womb and ovaries and went over scar tissue too where the endo had grown over the same areas of where it was removed before.
So now I am 2 weeks post surgery and feeling like the wind has been knocked a little out of my sails, I haven't bounced back as quick as I did the first time but I know each time it's different plus I probably wasn't 100% after the infection etc before I even went in. 1 week after surgery I took an infection in the wound and my emotions have been all over the place. Poor colin would look across the sofa in the evening and just say 'again!' I didn't even have a reason for the water works but they keep on coming.
I have had my follow up appointment to discuss how to slow down the regrowth, the hormone needs to reduce so right now I'm left with some pretty heavy decisions to make and some of them pretty life changing for someone at 28, very, very thankfully with 2 kids but hormones isn't really something you want to mess with, I have to think of more than just myself and those I am around too and also what the future may hold.
So far with endo I've learned to slap on loads of make up, pop some pills, smile and say 'I'm fine' as no one can see it and loads are unaware of what it is. I just hope that this surgery gives back a little quality of life again, for now anyway.
I understand this is probably a long winded, very boring blog post, I've crammed 10 years in this... I've skipped things out and maybe skimmed over the more cringe worthy things, but what I want those who do suffer it to know is you are not alone, don't be embarrassed to talk about it. We are 1 in 10.
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