On 26th July 2018, I married my best friend, my soul mate and life partner. It really was the best day of my life and I would do it all over again if I had the chance.
We had a very intimate church service of just under 50 guests, in a petite little village church followed by a reception and evening celebration at a near by water mill venue. We only had a handful of additional evening guests, so the whole day was spent with the people we cared about the most. Our canapes were actually ice creams and we had a live band playing all night. It was absolutely gorgeous.
It also happened to be the hottest day of the year so far, and from the moment I put my dress on (which I had deliberately left until the last minute), I was hot and feeling sweaty – but my husband-to-be must have been feeling much warmer in his three-piece suit!
Just 6 weeks before I said “I do” I’d undergone my third laparoscopy for my Endometriosis and my recovery had endured complications. Even when I eventually went back to work I wasn’t well, and there was a slight concern as to how I would be on my wedding day. I’d also been suffering with an awful flare up of my Interstitial Cystitis, which left me unable to spend more than 10 minutes without needing the loo, and I was struggling to eat and drink anything that was not incredibly plain.
So we embarked on a plan to try and help everything calm down and be much better controlled, and that is what I wanted to share with you today – especially as it really worked.
Endometriosis and Adenomyosis
I have grouped these two together because although they are different gynaecological conditions, I find their symptoms can overlap, and as they can produce similar symptoms, I have found their management is similar also.
Pain – When we identified that my pain was not settling after my operation (and that it was infact getting work), we booked a GP appointment to ensure I was taking the right pain relief. After a few appointments to find the best combination, and being advised on how to take them, I felt a bit more in control. Ensuring that I took them as prescribed and advised meant that most of the time, my pain was a bit more under control, and any flare ups were a bit easier to manage with the extra tablets I could take.
I made up a small bag to take with my to my wedding that contained all the pain relief I might need, and made sure I took my morning dose on the day of the wedding. Just in case I forgot that bag, I gave some spare packets to my bridesmaids.
Period – Since coming out of the menopause about 6 months before my wedding, my periods have been irregular and all over the place. Alongside the usual symptoms of really bad pain and very heavy periods, I would sometimes bleed for 2 weeks or more. And at one time, my period was due a couple of days before my wedding, which meant I would be in the midst of it on the actual day – I didn’t fancy having to sort out sanitary items in my dress, or get any blood on it!
I was given the option by my GP to take a pill to stop my period for that month. We contemplated it, but I was advised that it would make my period a lot heavier, possibly longer and very likely to be more painful once it arrived after I stopped taking it. With this in mind, I decided to see how the next couple of periods went to see if they fell into a more regular cycle – the pill was always there if I wanted it.
Luckily, my period did settle down (sort of) and I managed to have a period well before the wedding, with it ending about 4 or 5 days before my special day. But having the option of this pill made me a lot happier as I had something to turn to if things didn’t work out like they did.
Work – I was lucky enough to be back at work on alternative and lighter duties, particularly as prior to my operation physical activity and the manual handling associated with my job was really aggravating my pain. My line manager would not budge on them until even after my wedding, as they were more concerned that I was well enough to make my big day! The lighter duties meant less chance of flares and my pain was better managed.
Heat – Heat is always my closest companion when it comes to managing Endometriosis flares, and it works pretty well for Adenomyosis too. By making sure I had plenty of stick-on heat pads available at work and used my microwavable pad at home when there was any hint of flare, meant I was more comfortable.
Unfortunately my dress did not allow for a stick-on heat pad (and to be honest I don’t think it would have stayed stuck to my skin in that heat!).
TENs – I use a TENs machine from a company called “Ova+” (I have an upcoming article planned on it) to help the pain. TENs works by provided stimulation to the nerves to ease pain. I used it regularly in combination with my other methods to try and calm down any flares or get on top of my flare.
As with heat, I was unable to use this on my wedding day due to my dress.
Diet – Following my operation and unsettling pain, I made sure I avoided any of my trigger foods. For my Endometriosis and Adenomyosis, this includes avoiding dairy, gluten, sugar, alcohol and a lot of meat. On my wedding day, I continued to avoid these as best I can, by having the vegetarian options and no alcohol (I don’t drink anyway). This ensured I was comfortable on the day and minimised the risk of developing an Endo Belly.
Endo Belly – Even though this is more a symptom than a management condition, I thought it was important to mention as choosing clothes and being comfortable is often really important to me and my fellow Endo/Adeno sisters.
Firstly, I did not let my fear of developing an Endo Belly influence my style of wedding dress (in fact I went for something super fitted!), but I made sure that my dress fitter left me a little wiggle room in my pelvic and abdominal region. This was just a precaution in case I woke up with a monstrous Endo Belly or one cropped up during my wedding day.
Medication – As mentioned above, the build up to my wedding saw me experiencing a severe flare that left me stuck on the toilet for hours, endlessly needing to pee but nothing happening, as well as experiencing UTI symptoms after eating and drinking pretty much anything.
In a bid of desperation, I got in contact with my urology consultant and he prescribed me a new medication – Elmiron. This is a medication designed to help repair and soothe the lining of the bladder, and is commonly used in the USA, whereas here in the UK it is super super expensive and is only prescribed by a set list of consultants.
Thankfully, after taking it for a few days it made my symptoms a lot easier and I was able to start adding more tasty food into my diet with no problems. Unfortunately it came with side effects – the most notable being daily migraines and hair loss – therefore I stopped taking it in the couple of weeks before the wedding, as I didn’t want to be suffering with a migraine the day of my wedding or the stylist have to hide bald patches (yes, the hair loss was that bad!).
Diet – A bit like with my Endometriosis and Adenomyosis, the weeks leading towards my big day see me drink only water (and a lot of it!) as well as avoid anything that would be potential trigger to my bladder. Specifically, I was avoiding any acidic or spicy foods, fizzy drinks and things I had no eaten before. This in combination with the Elmiron made a huge difference, and even after coming off the Elmiron, the diet alone was very beneficial – I had no problems on my wedding day!
Leak protection – Ok, this is not something that we talk about openly, but with Interstitial Cystitis, us patients can find we leak urine either on exertion (e.g. coughing), after trigger foods or for no particular reasons. Whilst I was trying to prevent this happening with my above prevention methods, I made sure I had an appropriate protective pad on for my wedding day – I did not want any smells or wet patches on my wedding dress!
Thankfully, it really wasn’t needed as my bladder was much more relaxed with my trying to get it under control.
Pain – Whilst the bladder pain I experience is different to the pain I experience from other conditions, I can manage it by sticking to the above described diet changes and taking the right medication. Elmiron, in fact, made a good difference to my bladder pain levels meaning I was a lot more comfortable on my wedding day – I was able to hold on during the speeches with no problems.
Fatigue – Now I have not yet released my article on what M.E./CFS is, so for a quick low down, it stands for Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. It is a poorly understood condition where sufferers experience severe and overwhelming fatigue, awful muscle and joint pain, post-exertional malaise and problems sleeping, as well as a whole other lot of symptoms.
To manage the fatigue, the adjustments I had at work meant I was able to come home and not fall asleep straight away or suffer with the other symptoms such as aches, headaches and dizziness. I also had the support of my family and husband to take on the heavier stuff for me, and I used any chance to rest that I could.
On the couple of nights leading up to my wedding, I found I was struggling to sleep, so practiced things like “sleep hygiene” (read about it here) and relaxation. This meant that on the night before my wedding, I was not worrying about how much sleep I would have or how I would fall asleep.
Resting and pacing – Part of the “treatment” for M.E./CFS if ensuring you are getting enough rest, and pacing your activities, and this is what I put into practice for my wedding day. As well as having the modifications at work, my husband-to-be and I made sure we spent our free time resting more than doing things, meaning I had plenty of energy to dance the night away at our wedding!
Relaxtion – Another part of managing M.E./CFS is making sure stress is minimal. Now this was particularly challenging, as we were renovating our house and moving in at the same time as putting the finishing touches to our wedding.
However, my husband was fantastic – he would take on all sorts of task to prevent me from having to worry about anything, as well as organise all the work and moving thins we needed. He would also make sure our evenings were relaxing by running me baths, giving me massages and generally spending lots of time together.
Pain – Again, the pain I experience is generally different – focused to my limbs, head and back. Taking pain relief definitely helps, but I found having regular massages and baths soothed the muscle and joint aches I experienced. The fact that my husband was doing a lot more of the manual work with our house meant that this pain was minimal, and not present on my wedding day.
By practicing the above and putting the prevention methods into place, I was able to fully enjoy my wedding day without any worrying symptoms. My pain had eased in the last week or so before my wedding and my bladder in particular was much calmer. And whilst I was absolutely shattered the day after my wedding (we got in at 2am!), the techniques I used beforehand meant I didn’t suffer as much.
By having the support of my family, friends and GP, I was able to feel more confident about how my health would be on my wedding day – I had everyone on my side. The adrenaline of the wedding definitely helped also – I was so excited, nervous and happy I didn’t have time to worry about anything.
You should’t let any health condition affect a special moment in your life, so I hope what I did can help someone out.