Updated: Mar 5, 2020
It’s 4:30am on a Thursday morning and I’ve woken up in pain. Whilst I’m lying in bed with a hot water bottle, not able to sleep, now seems like as a good of a time as ever to start on a very real, very honest blog about suffering with endometriosis.
How I knew...kind of
Although I was only ‘officially’ diagnosed in December 2019, my symptoms and experiences with the condition have been continuous for years. I’m 24 in September 2020, and I can remember pains and symptoms going back to when I was age 16. Eight years of symptoms and pain condensed into one blog…I run the risk of majorly dragging this out; I’m really going to try not to! I’m going to go over my symptoms, diagnosis, and very relevant to Martha Loves: how to run your own business while living with endometriosis.
The main symptom and pain I have suffered with ever since I started my periods, was bladder pain. Always. When I say bladder pain, I mean the intense feeling of a water infection, cramps, burning, urgency, blood in my urine. I found myself continuously going to the doctors for them to tell me there were no signs on a water infection in my samples. It was THE most frustrating thing. I’ve been on holidays and ended up in hospital, I have spent whole nights (and this isn’t an exaggeration…literally hours) lay in the bath with a cold flannel and the cold tap running to stop the feeling of burning in my bladder. I have had the worst pain of my life, and my GP was telling me there was nothing wrong. I was lucky enough to see a urologist privately and after lots of tests I was diagnosed with Painful Bladder Syndrome. Although I was given medication for nerve treatment, I still experienced flare ups, and because I had no control over it and the pain was so intense it massively affected my day to day. It made me not really want to go out the house, because as soon as the pain would come on, I was written off, on the toilet with a hot water bottle for hours.
I have also experienced severe cramping and tummy aches, not just period cramps but any day, any time of the month, intense, curl over in a ball cramping. I’ve seen an amazing gastroenterologist over the last few years also. Because of the tummy cramps I was having, and also how bloated I was, it was thought I may have Crohns disease, then IBS, then gallbladder problems. I had every test under the sun…MRI’s, CT scans, I’ve swallowed cameras, eaten porridge's. You name it. After my last appointment with this Professor, he sat me down and said ‘look, I can’t find anything, and I really don’t think this is gastro related, I think you need to go back to a gynaecologist’. I felt hugely deflated that nothing had been found after such a long investigation, but as suggested, I booked an appointment to see a gynaecologist I had seen regularly since I was about 17.
Another main symptom, which I know so many people experience, but is also very personal and private, is pain during intercourse. This is something I suffer with and something I really struggled to find any help with. The only way I can explain the pain is like being punched in the stomach so hard it makes you just want to drop to the floor and hunch over in a ball. And it did worry me, of course, I knew that pain wasn’t normal and from asking my close friends, my sister, my mum, I knew it wasn’t something everyone else felt either. I didn’t get this pain every time, but it was frequent, and it became a problem in past relationships and just my overall confidence.
I did go and see a private gynaecologist, who was very high in her profession and I continued to see her on and off or about 5 years. It’s important to know that endometriosis can only be diagnosed through a procedure known as a Laparoscopy. This is when an incision is made through your belly button, to look around your pelvic area for any signs of endometriosis. I had had this done twice, the last time was March 2019 and both times in the follow up report it said, ‘there is no signs of endometriosis’ and I was categorically told I do not have it. On a side note…
during this laparoscopy I was fitted with the Mirena Coil; I had it for about 9 months and it did not agree with me .At. All. I was in agony, hormonal, had bad depression, weight gain, almost every bad side effect you can have from the coil. My new endo specialist (you’ll read about him in a min) removed it for me when I saw him. I decided I wanted a second opinion and my cousin, who too was diagnosed with endometriosis a couple years ago, gave me a list of endometriosis specialist in the UK; there were 10…
And it really did all happen this quickly. I got an appointment privately with the closest specialist to me. I took a folder with all the doctors and procedure reports I had amassed over the years. I went into the room with my mom, we sat down with the Dr and I told him as many symptoms and doctors discussions as I could remember. He listened and then told me, from everything I’d said, he thought I had endometriosis. I kind of sat there, just processing it all, and my Mum asked how it could’ve been missed after all these years, even after laparoscopies. He explained that as a female in my 20's endometriosis in me will look very different from someone in their 30’s or 40’s. He also told me that without a minimum of 4 incisions during a laparoscopy and without a specialist who knew where to look or what to look for, it would most likely be missed. I don’t think I told him a single symptom: bladder pain, cramps, bloating, pain, bleeding, that he didn’t say was because of endometriosis or a knock on effect. We were talking for an hour and I felt massively overwhelmed; I cried a bit, asked a lot of questions, and then wanted to know how and when I could be treated.
I had a laparoscopy on December 16th which showed endometriosis on my bladder, my right side, outside my uterus and on my Pouch of Douglas. Most of it was removed and I began the slow road to recovery.
How did I manage to start a business during this time...
It was difficult. I have the most amazing business partner in Rachael, she made it so that I was able to take a month, over our first Christmas, to have my procedure and relax and recover. The pain had for sure grown since starting Martha Loves; not because of it, just bad timing and being left untreated. There were
days when I would have to work from bed, if I felt I could sit up to do so. Other times I’d just be lay in bed with a hot water bottle. It made planning events and diary filling an anxious thing for me.Before my operation in December, the run up to Christmas was intense. I had a lot of pop ups which I was doing on my own in Shropshire, and I felt a lot of anxiety in case I would be in too much pain to do them. I definitely didn’t expect recovery to take as long as it did, and the feeling of wanting to get up and get going was frustrating when I just couldn’t.
One of the main draws to having your own business is the ability to be flexible and work around you and your life. Me and Rach are fortunate to be able to plan our own diaries and be there to do the school pick up or go to an appointment if we need to. But equally, I know we are very conscious of every day that we take off, because we know exactly what’s being missed or not done any time we aren’t there. It’s a strange thing. Your business is your baby, and ours is new, so we are extra hard on ourselves and feel guilty not working, even when we physically can’t or have earned the time off.
With my endo and Painful Bladder Symptom, stress is a huge trigger for me. I can almost feel the pains coming on as I’m getting more overwhelmed from work or life or anything. In an ideal world you’d just eliminate all stress from your day, but that just isn’t possible, and with a new business especially, it can be stressful. I have definitely struggled with how to manage this. Our Martha Loves HQ is actually a really calm, stress free, homely place. On an off day I have no problem with going in in my comfies, hair scraped up, slippers on an a hot water bottle in hand and that’s a really big plus. Having Painful Bladder Syndrome and endometriosis can be really isolating, because the positions and equipment you need to get comfy, aren’t something you want everyone to see. So I’m super lucky I can go to our office feeling totally relaxed and comfortable, even on off days.
So what's next?
For a long time, and because of all the symptoms I was having that all seemed to be connected but never treated as one, I think I always thought I may have endometriosis. When I went to doctors and said this and was categorically told I don’t, then of course, I believed them. Without having spoken to someone suffering with endometriosis (my cousin) and her saying ‘Are you sure you don’t have endometriosis? Because you sound so much like me and it can be so easily missed’ maybe I wouldn’t have pushed for a second opinion. Until I was told exactly who I could go and see to finally get to the bottom of it all, I wouldn’t have known where to go. Had I have had a blog post like this that I could read, relate to and know what to do going forward, I really think I would’ve been able to get to the bottom of things sooner. It takes an average of 9 years to be diagnosed with endometriosis; it took me over 6 years. So that’s why I’ve written this post, in hopes that maybe someone who’s suffering like I was, and like the 1 in 10 women in the UK who have this condition, will read this blog, relate to it, and push further to look into what they’re experiencing. Please remember...not all days are bad. Yes I have my hospital photos, post surgery pictures, but each photo in this blog post was taken shortly after a flare up, just so you can see I was still able to get myself together, have a ball and make the best memories.
There is a UK endometriosis helpline which can be found online and there is also me…here to answer any questions or any interest anyone has in my story, doctors I’ve had, treatment…anything you may be going through.