ENDOMETRIOSIS: DIAGNOSIS & RECOVERY.
In short for the last ten years I’ve been living with undiagnosed, ill health.
I spoke about the situation openly but when I started to receive unsolicited ‘hate’ around how I dealt with it online, I decided to take a step back. I vowed to myself that I wouldn’t speak about it again publicly until I had a diagnosis. And now I do.
At the end of November 2018, I underwent a laparoscopy – an exploratory operation to determine whether I had Endometriosis.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a condition where the tissue that lines the womb is found outside of it. It can pretty much grow anywhere, but will typically be found in the ovaries or fallopian tubes.
Including but not limited to:
- Chronic pain – usually in your lower tummy or back (aka pelvic pain). This will usually worsen during a period
- Intense period pain (to say the least)
- Chronic exhaustion
- Pain during or after sex
- Pain when opening your bowel or bladder
- Nausea, constipation, diarrhoea, blood in urine
- Difficulty getting pregnant
- Feeling anxious and depressed
For me, the most worrying symptom was fainting, seizures and losing control of my bowels – which landed me in A&E on numerous occasions.
HOW DO THEY DIAGNOSE IT?
You can have pelvic exams where the doctor will look for cysts (which can indicate endo) – but the only way to officially diagnose it is through surgery.
The type of surgery performed is keyhole and is called a laparoscopy. A small telescope is inserted into the abdomen so that the surgeon can look closely at the internal tissue.
They fill up your tummy with air, to create a big enough gap between the abdominal wall and internal organs so that they can see clearly. If they find any endometriosis they can either cut it away or laser it.
HOW DO THEY TREAT IT?
- Standard painkillers (paracetamol)
- Contraceptive pill or hormone medicines
- Hysterectomy (removing the womb)
IS IT CURABLE?
Sadly, endometriosis isn’t curable. Having a laparoscopy will confirm a diagnosis, and if the surgeon is able to remove any tissue found this should offer some relief for the aforementioned symptoms for a while.
However the tissue will grow back and the symptoms will, too. It’s a lifelong condition that can be incredibly difficult to live with.
A hysterectomy is viewed as a permanent solution for the chronic pain, however some women will still experience symptoms after this surgery, too.
HOW LONG DID IT TAKE TO GET A DIAGNOSIS?
Thanks for sticking with me whilst I played Doctor Google there! There’s no use me waffling on about how I ~feel~ if you have no idea what I’m talking about!
Now, let’s crack on with the personal side of things.
I was poorly for a very long time. In total I spent ten years going to and from the doctors for various different symptoms. Be it a gynae for painful sex and horrendous period pains or the general GP for persistent bowel issues. I even saw a sex therapist at one point because they were convinced it was all in my head – the suggestion was made that perhaps I simply couldn’t relax.
I did a lot of research of my own and tried my best to be persistent with the doctors. This led to referrals at the hospital for various departments.
From the symptoms I showed I was pretty convinced it was a gynaecological issue, but the specialist I was finally referred to in 2017 wasn’t convinced. She asked that I investigate my bowels before we did anything else.
I had every test under the sun. Including but not limited to: all of the blood tests, poo samples, wee samples, sigmoidoscopy, colonoscopy, ultrasounds, MRI’s, internal scans, the list goes on.
In terms of what they found physically found over this time period…
I had a cyst, but it wasn’t big enough to warrant removing and doctors advised that they will often ‘pop’ on their own.
Any kind of bowel examination showed up clear – the only thing they discovered was high calprotectin levels in my poop (lovely). Which basically means there was inflammation in my bowels; although they had zero idea why.
So back to the gynae I went! She’d promised me once I’d ‘eliminated’ any bowel problems she would explore my lady bits (not like that, you filthy animal).
It was incredibly exhausting – feeling so unwell pretty much all of the time, and constantly being told nothing was wrong with me.
Even the specialist didn’t think it was anything sinister, and for most of 2018 I felt like a complete fraud. I started to believe I was making up my symptoms, that maybe it wasn’t as bad as I thought.
But after a long history playing process of elimination, the gynae specialist promised a laparoscopy. At the appointment where we agreed that would be the next step she said: ‘I don’t think it will be endometriosis, but you’ve done everything else I asked to no avail, so let’s see’. Followed by: ‘Just to make you aware there are risks that we can penetrate organs throughout this procedure so you will need to confirm acceptance of that and be willing to have a blood transfusion if necessary’.
Of course I know they need to tell us all of the risks and that the likelihood of it actually happening isn’t high, but in the 8 month wait I had for the operation, I was a nervous wreck.
The thought of having the procedure with zero guarantees that they’d find anything when they finally cut into me was petrifying.
I considered cancelling the operation probably every other minute for at least a month leading up to the date. My anxiety was off the charts and I was convinced they’d pop a major organ and I’d bleed out on the table (I’ve definitely watched too much Grey’s Anatomy). But in all seriousness, I absolutely couldn’t handle the risks involved and considered my option of having a life without answers many times.
It was Jamie who finally said to me, ‘mg, can you carry on living how you have been, forever?’ And the answer was no, I couldn’t. I was running on empty and so desperately wanted to know what was wrong with me.
So I did it.
I was booked in to arrive at the hospital for 7am and would be seen any time that morning. Luckily I was the first on the list and was down with the anaesthetist in no time. I was petrified and tried my best to stay calm. I just kept repeating to myself ‘no matter what, you will have an answer’. The nurse held my hand and next thing I knew I was awake and in the recovery area.
The nurse who woke me immediately told me they’d found endometriosis and I cried happy tears. I was so relieved to finally have an answer. To know it wasn’t all in my head – that all the pain and worry and time spent fighting was worth it to get to this point. Even if it was incurable.
The procedure was only around 40 minutes, but I ended up staying in the hospital until 9pm. I reacted very badly to the morphine (turns out my body hates drugs) and the anaesthetic.
I couldn’t stand up until around 8pm that evening. Each time I tried I would throw up or nearly pass out. Literally everyone that had had an operation that day went home before me. I was the only one left on the ward come evening. Drama queen or what?
The air that they filled my tummy with got trapped in my shoulders (which is very common), and was absolutely excruciating. The pain in my tummy was actually quite minimal in comparison – I’m sure down to the insane amount of drugs in my system. I was told to keep moving and just breathe through the pain.
They finally sent me home with some replacement dressings and a number to call should I need anything.
It was a really rough few nights. You don’t realise how much you use your tummy muscles until you can’t. Jamie literally had to roll me out of bed and lift me on and off of the toilet. Doing anything for myself was impossible.
I had a little amount of murky discharge, which is completely normal. And the nurses advised after 3-4 days I would be okay to use tampons and have sex.
Let me tell you now, THERE WAS NO WAY ANYTHING WAS GOING IN OR UP THAT AREA AFTER FOUR DAYS. That is absolute insanity. Of course everybody is different and that is simply a guideline, but to anyone that may take that as gospel: don’t. Just listen to your body.
By day 3 I knew I had a urine infection. I needed to pee every few minutes and the pain was unbelievable. Not to mention the blood. We went back to the hospital and I was put on antibiotics and bloods were taken to ensure there wasn’t a further infection. They use a catheter to empty your bladder during surgery and this can sometimes, albeit rarely, lead to infections.
I was also taking codeine, paracetamol and ibuprofen at regular intervals for the tummy pain (which was pretty intense at this point), but so many drugs in my system ended up making me sick. It was a vicious circle of wanting to ease the pain, but subsequently throwing up and becoming increasingly anxious I’d rip out my stitches from vomiting. In the end I vetoed the codeine and stuck with the two simpler drugs – I also tried to eat as frequently as possible so that I wasn’t taking anything on an empty stomach.
I could only lie on my back in bed, rather than sleeping on my side like I usually would. If I was to turn over to my side, it would feel like my insides were being pulled – which needless to say, wasn’t a great feeling.
I didn’t shower for about 4 days (mmm, attractive). But once I did, I did so with my waterproof dressings on and didn’t touch the wound physically for around 3 weeks. (That’s not to say that’s the correct way to do it – but there is very little information given on aftercare and so I just did what felt best).
I had two incisions: one just above my left hip and a larger one in my belly button.
I was given dressings to cover the wounds that lasted me around 2 weeks – Jamie changed them for me every few days. Once I ran out I had a bit of a panic. I hadn’t actually looked at the wounds and that kind of stuff makes me very squeamish. There was no indication from the hospital information how long to keep the dressings on and if they would be okay to be open once I was out. It literally just says to keep the initial dressings from the hospital on for 48 hours and to not have a bath. There is zero information given about aftercare.
Obviously, everything was fine. The incisions were healing nicely and were just a little bit dry and had a fair amount of dried blood, which made it look worse than it was. It was around 3 weeks before the stitches dissolved/fell out. In that time I wasn’t able to wear anything restricting over them as it was too uncomfortable and my stomach was swollen. All of my clothes are pretty much high waisted and so I lived in jumpsuits and leggings for the times I actually had to get dressed.
Once the urine infection cleared up, I would say it took around 2 weeks for the anaesthetic to completely leave my system. And for that time I felt completely wiped out.
The immediate pain subsided after that timeframe, too. But doing anything other than lying in bed was very difficult and would hurt. It was around the 10th of December that I quite vividly remember waking up and thinking ‘OH! I feel more like myself!!!’
I did have my period during this time too, which was all kinds of hell. I’m hoping that’s down to the fact that my body was very much still recovering and is not a sign of things to come.
It’s been nearly a month and a half since the operation. My stitches are out, the incisions are completely healed and I’d go as far as to say I feel back to my normal self. I’m using a Cica Repair Balm to help reduce the scarring, although they are pretty small anyway.
The emotional side of things might not be something we’d immediately consider when thinking about surgery. But it had a massive impact on my mental health.
After the operation, I was very, very down. I felt completely helpless and hated being in pain. Each day I tried my best to not fight my body on what it needed and listen to what would make me feel best. It wasn’t easy, but I knew doing too much would only cause further problems.
Dealing with the fact that I have a lifelong condition isn’t something that registered straight away, either. Actually, I’m not sure I’ve fully taken it in.
It’s a lot to know that you will probably never feel better or at full health again; but it’s also a relief to have an answer. I’m not sure I’ve quite worked out how to manage my feelings regarding it going forward. I’ll have to come back to you on that one.
It has also been surprisingly difficult to manage others expectations of me. I’ve lost two friendships this year (seemingly) because of being unwell. It’s been incredibly difficult and has really made me question who I am. But if I’ve learned anything it’s that the people who truly love me haven’t wavered – and they are who matter.
WHAT WILL THE FUTURE LOOK LIKE?
I’m hopeful that the surgery will have alleviated some of my symptoms for the next few years. My surgeon advised that it would probably be 2-3 years before any further endo grew back. And we’d assess how we deal with it when the time comes around (most likely another laparoscopy). She also advised that if I were looking to have children, it would be better to ‘get started’ sooner rather than later. But that’s not something I’ll delve into now.
In the meantime I am being treated with the contraceptive pill (yasmin). Whilst also researching alternative diets to help with any symptoms that may continue.
I usually write as therapy for me – but this post is just for you. For anyone who is struggling with an undiagnosed condition, as hard as it is, please don’t give up. Even though it feels impossible, there are answers out there and you deserve them.
I hope this may help anyone who feels they may have similar symptoms to me. Even if only to give you the gumption to persist with your health care professionals.
I am so grateful to have the NHS – what they do on a daily basis is absolutely incredible. But they are insanely stretched when it comes to resources and that can sometimes mean a slower diagnosis. So keep fighting for what you believe. We so often know our bodies better than anyone else.