Today’s guest post was written by Joanne Kerr, who we’ve invited to share her journey of Endometriosis and Adenomyosis. Joanne is a testament of tenacity and positivity (whilst still acknowledging the painful, real moments of life with a chronic illness). Many of us who have experienced gynaecological issues will relate to the misdiagnosis and struggle to have your symptoms truly acknowledged. I know I did. On with Joanne’s incredible story…
Being a woman in 2019 we are forced to wear many capes on a daily basis. It is an unspoken rule that we need to have some form of superhuman powers to juggle all that life throws at us, whilst having perfectly manicured hands and eyebrows making Brooke Shields green with envy. But what happens when the shit hits the fan and these magic capes just blow away in the wind and you are left standing vulnerable, exposed and a tiny bit chilly? This was how I felt after being told I would need to be put into early chemical menopause at the age of 31.
Since the day my period started at aged 11 they have been nothing but hell. Heavy bleeding, clots, fainting, sickness, constipation, bloating and pain was all included in my monthly subscription package. So when told I had endometriosis I didn’t even know how to pronounce it let alone understand it, but I felt relief. Relief that I was listened to and that I was not going mad.
I was first diagnosed with endometriosis 10 years ago. For many years, my GP claimed that each month my symptoms were just that of a heavy period or “it’s something unfortunately you have to put up with”, “all women get it” and that “periods are supposed to be painful”. The best one was “Oh well, just start the pill and it will help”. I was pushed from pillar to post for 10 years before I got the diagnosis of endometriosis via having a laparoscopy. When I was informed of my diagnoses, I was told that I needed to start a family asap. I was 21, recently been accepted into university and my boyfriend (now husband) was rocking the cardi, studded belt and 2 earrings look. Plus we were enjoying alcohol and super noodles far too much to want to start a family.
After my first laparoscopy in 2010 life was pretty normal, settled and relatively pain-free. I managed to complete my nursing degree and bagged myself a job as a surgical ward nurse. Oh and I also got married and bought a house but no one likes a boast. It wasn’t until the end of 2015 that I was starting to experience the pain and discomfort of my endometriosis once again. Clots, legs up to my chest like a ball, pain with sex and fatigue were becoming the norm once again. So, off for another laparoscopy I went. This time they found a little more endo than last time and that my ovaries were stuck to my uterus wall. Surgery was a success and Jack and I felt it was time to think about trying for a family. We had always been told that it would take a while due to my condition, or that it may not happen naturally so we knew it would be a long road ahead. 8 weeks post-operation we were pregnant!! Jack believes it’s because he has super sperm but I always remind him not to be so cocky. Roll on September 2016 when we welcomed our beautiful baby daughter Penelope.
Post baby I was loving my periods. This may sound like an odd thing to say, but when you have suffered so badly for many years, having a period that only requires a regular pad and no pill popping is like Christmas day. I was a new woman, I felt happy, at ease and not angry with my body anymore. But this little madam known as my reproductive system was just playing tricks for what was around the corner…
2018 we found ourselves pregnant with baby number 2 and we were overjoyed. Close friends and family knew and Jack and I were feeling the love. We had been trying for only a few months so again we felt extremely lucky to have been given this opportunity. A good few weeks into the pregnancy I started to bleed. A bleed that I just knew wasn’t going to turn out ok. After nearly a week in and out the hospital as a day patient with many scans, bloods and examinations we were told to go home and come back in a few days to ensure everything was still going on the right track. Jack and I felt positive and a little relieved. I went outside to call my parents to tell them we were on our way to get P when I felt a trickle down my leg. I knew it was blood. I managed to go back to the ward where Jack was waiting for my letter and then I collapsed. Blood had soaked through my pad, knickers and leggings and I was taken to a bed with cannulas and IV fluids. I felt vulnerable. 4 days as an inpatient we were given the news that the pregnancy was no more, yet my body wasn’t letting go. Off to theatre I went for laparoscopy number 3. When I came round I was informed by the consultant that my endometriosis had returned with a vengeance and was now spreading towards my bowel. Jack and I were told to try and conceive again for the next 6 months and he will review and make a plan at a later date.
6 months passed. 6 months of negative tests. 6 months of crying on the toilet every time my period came. 6 months of jealousy. 6 months of feeling like a failure. 6 months of just wanting to give up. Also within this 6 months my darling dad had been diagnosed with stage 4 lung and oesophageal cancer, our beloved cat Barney died and I decided to take a few short stays in the 5 star local hospital for cysts and pain.
After my seeing my consultant in Jan 2019 I was told I would need laparoscopy number 4. This time round I went private. Once again the operation was successful but the diagnoses not so much. I had stage 4 Endometriosis and adenomyosis and nothing could be done. We discussed how we would still like to try for a second baby and that I wanted to hold off on some of the more serious treatment options. Months passed and no sperm had met the egg and my next consultant appointment was looming.
October 2019. “I’m sorry but there is not much more I can offer you apart from an injection that will stop your periods and put you into early menopause” – the words that came out of my consultant’s mouth. I explained my fears of starting Zolodex and I did feel listened to, but deep down I knew this was my only choice. So I did it. I started the injection. October 30th 2019 was the day I was first pricked with a needle the size of a pen in the hope my pain and bleeding will be controlled. Am I scared? Hell yes! The list of symptoms for both the Zolodex and HRT are enough to rival the bible. Hot flushes, mood swings, hair loss, weight gain, depression, insomnia, fatigue, headaches, joint problems, low libido and a little vaginal dryness thrown in. Sounds like a right party especially at 31, yes?
Its been a week since I had the injection and I’m just feeling a little blah. I feel foggy and distant and I am still trying to get my head around this hormone in my body that is going to change my life. My cape is well and truly off at present and I am lucky to peel myself from my pyjamas, but I’m ok with that. Yes, I am scared, yes I am vulnerable, yes I am nervous, but do I feel loved and supported? YES. I know I will get through this will laughter, love, kindness, piss taking and a hand fan and YES I am ok with that.
So here’s to all the women living with endometriosis, adenomyosis, menopause, chronic illness, anxiety and everything in between. It’s ok to not have your shit together every day and to leave that magicians cape with all your different roles on it in the cupboard. It’s ok to stay in bed and watch films and eat snacks with your children, or cancel a get together, or to stay in and just have a bath. It’s ok to just live day by day and survive.
It’s ok to just be you.
If you feel your own story resonated with Joanne’s, then do be sure to contact your GP to make sure you’re getting the support and treatment you need. Joanne has set up a Facebook support group for women in Kent to have a safe online space to talk about all things gynaecological called East Kent Endometriosis Support Group. Joanne is also currently undergoing training from Endometriosis UK to become a face to face support group leader. You can follow Joanne on Instagram at @Memywombandi and Twitter at @Wombme.