LET'S TALK ENDOMETRIOSIS | ENDOMETRIOSIS AWARENESS MONTH

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Today I wanted to discuss something a little different - March is Endometriosis Awareness Month and funnily enough, the first time I ever heard of this condition was through the beauty world, thanks to Tati Westbrook speaking out on her experience. I'm almost a year on from my surgery and I thought it seemed like the perfect time to reflect on this journey, in the hopes it might help someone else...

Endometriosis is a condition whereby tissue that's similar to the uterus lining grows in other parts of the body (usually the pelvic region, but it's been found as far away as in the brain, though this is exceedingly rate). Common areas for endometriosis to develop are: on the bladder, the bowel, the fallopian tubes, the ovaries and even within the uterine wall (this is called adenomyosis). We still don't know what causes endometriosis but it's thought to affect c.10% of people with a uterus worldwide.

Image via: mayoclinic.org

The short answer is: you probably can't. Whilst severe cases can sometimes be picked up via a pelvic ultrasound or an MRI scan (this is also helpful for ruling out other potential causes of any symptoms you're experiencing - such as cysts or potentially-cancerous growths), the gold standard is a laparoscopy. This is carried out under general anaesthetic and an incision is made through the belly-button and a camera is inserted so the surgeon can identify the endometriosis. In practice, this is rarely done in isolation because once you're in position; it makes sense to just remove the endometriosis found. That leaves you with some pretty broad symptoms, so it's not surprising that it takes around 8 years for most people to get a diagnosis! Typically, when we visit a GP, their goal is to eliminate the most-likely and easiest / cheapest causes of your symptoms before considering a specialist referral, so in this context I suppose it's not that surprising.

Common symptoms include:

Painful and / or heavy periods

Nausea and / or pain when going to the toilet during your period

Pain during sex

IBS (irritable bowel syndrome) symptoms

Tiredness

Back pain

As a disclaimer: this entire post is not advising you to do anything other than to consider a few things and maybe book a GP appointment. The path I took will not be for everyone. My experience will not be reflective of everyone who has endometriosis. This is just a retelling of what happened to me.

Honestly, I had experienced painful periods for as long as I could remember. Sometimes I missed school, sometimes I'd be lying on the ground sobbing in pain, sometimes I'd throw up. As I got older, I moved onto the contraceptive pill; I know many people experience issues with the pill, but luckily I didn't and it really did help with my symptoms. I no longer had to plan my life around my period and had the flexibility to skip the break if I needed to, and when ?I had my period, some of the edge was taken off. Many people find the contraceptive pill reduces their symptoms, but where they experience other side-effects, it becomes a question of if it's 'worth it'. Only the individual whose body it is can answer that, but for me: it helped.

That didn't mean my symptoms went away completely, though. The most incapacitating became the IBS symptoms for me from my mid-20s onwards. Whilst other measures like medications and following a low-FODMAP diet helped a little; I now knew what endometriosis was, and I felt uncomfortable continuing to just 'manage the symptoms' when this stuff was just inside me, probably continuing to spread. As I moved towards 30, thoughts of preserving my fertility also came into play. So, I decided I wanted to do something about it...

Honestly, I wish this portion of my story was a little more inspiring, but I have to be truthful; I'm a person of reasonable intelligence who feels capable of advocating for myself, yet I found seeking help a really difficult experience. It didn't really feel like anyone was looking at my medical history as a whole; each time I visited about various symptoms, it would be treated like an isolated incident and this went on for years. I was trying different medications and diets to alleviate the symptoms but when I did my research and pushed for a referral, I got given a pelvic ultrasound. This was explained incredibly poorly to me; it was also disappointing that I was related the information by a receptionist with no medical background. I was told the ultrasound was 'fine', which made it sound like no further action was required and there was nothing wrong. This isn't correct; as I mentioned, whilst endometriosis can sometimes be viewed in this way, it's not a guarantee. The fact nothing has been found and no alternative explanation identified requires further investigation and without the resources I've been able to find, this would've been the end of my journey. I raised this and received a very hostile response by a doctor who really minimised my symptoms and tried to undermine me. The whole experience was really shattering for me. They eventually agreed to refer me to a gynaecologist, however when I followed up a few months later, I discovered they had never made the referral.

I'd like to say I managed to get this sorted out, but the truth is: I didn't (though I did issue a formal complaint to my GP office to try and ensure this doesn't happen to anyone else). I am fortunate enough to have access to private medical care through my day job, so I was referred through BUPA. The truth is: I don't feel great about that. Whilst it was fantastic for me personally, what does it say about what our NHS has been reduced to after over a decade of funding squeezes? Health probably isn't an area to dig your heels in on and stick to your principles, but it bothers me that I couldn't get what I needed via the channels available to the vast majority of people in this country.

Obviously, once I entered the BUPA system, it was pretty smooth sailing. I chose my surgeon, who was based in Manchester (which is where I'm from, though I'm now based in Birmingham). I got an appointment quickly, I could have my surgery whenever I wanted and the appointments were always running on time. My surgery was on a Monday morning and I can't speak highly enough of Dr. Andrew Pickersgill and everyone else at the Alexandra Hospital in Cheadle. I really wasn't sold on having a male surgeon, which I realised was so silly, because from my first consultation he showed me so much empathy. After my first consultation, I was so overwhelmed at being heard for the first time that I had a little cry on the way home. On the day, I felt looked after and everyone was so kind to me even though a day that was such a huge deal to me was just another day at the office for them.

My route ot treatment allowed me to go with my preferred option: excision (as opposed to ablation). Excision is the more specialist but preferred way to treat endometriosis and prevent recurrence; this is where the tissue is cut out of the body. Ablation is generally considered to be the less preferred option. This is where the endometriosis is destroyed with certain frequencies or extreme temperatures. The issue here is that it might only be superficially damaged; if the endometriosis is really bedded in, it could survive deeper in the tissue and regrow. Many people who opt for (or are pushed into) ablation may need further ablations in the future, whereas excision often provides a permanent solution.

I've never been under general anaesthetic, so it was a little surreal; one minute the anaesthetist was talking to me, the next I was coming around in the recovery room. I had a Monday morning surgery but I was pretty nauseous, struggled to eat and was in and out of consciousness for most of the rest of the day. For a few days after, I felt pretty low-energy and didn't exert myself too much (I'm pretty sure I just watched Heartstopper on my mum's sofa and napped!) However, by the weekend I travelled back to Birmingham and by the following week, I was working from home.

It can take up to 6 months to fully-realise the improvements that surgery can give, but I noticed some differences right away. Periods became annoying, rather than insurmountable; I no longer experienced the extreme stomach pains, cramps and digestive issues. My wider digestive issues have also improved a lot; a peppermint capsule is now enough to keep things within a pretty normal range and if I get cramps, an ibuprofen can take care of it. Don't get me wrong; if I'm booking a holiday, I'm back-to-backing my pill packet! But, I no longer feel like I have to retreat to my bed and sofa for the weekend if I know I'm on. I generally feel less anxious, more relaxed and so much more comfortable with my partner. I feel freer, overall, and for me: it was so, so worth it!

Are your periods disrupting your life?

Do you find yourself cancelling plans, missing school or work or unable to be intimate with a partner due to pain around your period?

Are you using a lot of painkillers for cramps or IBS medications?

Do you experience pain in your pelvic region or back during your period?

Are you exhausted and do you struggle to function in your day-to-day life whilst you're on your period?

Has your period led to nausea and vomiting?

If you feel like several of these questions apply to you: it's time to speak to your GP.

I got a huge response on my original Instagram post when I got my surgery, so I thought I'd collate the FAQs in one place!

What's the downtime for surgery?

My surgery was at around 9am in the morning, so I can only speak to my experience; there were no complications so once I was able to wee and eat without puking, I was able to leave. This was 8pm for me, though I was scheduled to stay overnight originally. Obviously if you have your surgery later in the day, you might have to stay over regardless. If you don't have nausea or other issues and you had your surgery at 9am too, you might be able to leave sooner. I felt tired and a little fragile for a few days after, but pretty much 'back to normal' within 2 weeks.

What are the risks?

Obviously, going under general anaesthetic carries some risk; you may have an adverse reaction. In terms of the actual procedure, it would be damage to the areas that endometriosis is being removed from, which is pretty rare but sometimes corrective action has to be taken.

What do I do if my doctor isn't taking my concerns seriously?

Obviously, I've shared my story so you know I didn't really manage to 'convince' my GP, so maybe I'm not the best person to advise. I would keep a consistent record of your symptoms, your visits to your GP and the action you've taken to try and mitigate your symptoms so far. Ultimately, your goal is to get a referral to a gynaecologist, so going into your appointments with your GP with that mindset is important. And if you're really struggling: you're entitled to a second opinion.

What do the scars look like?

This was definitely a concern for me! As someone with melanin, I was a little worried about scar fading and potential keloids. However, I really can't complain at the results I've seen considering what was done within my body. The camera was inserted through my belly button and two incisions were made near my hips; one was for the cutting tool and the other for the gas which expands the stomach so the surgeon can navigate around. Surgical glue was used during my procedure which I had to keep in place for a little while before dissolving in the shower. The bruising took a couple of weeks to come out but it looked worse than it was. I used a silicone gel on my scars every morning and evening for 3-4 months.

Immediately after surgery

2 weeks later

3 weeks later

6 weeks later

1 year later

These are my references for the information given here and some resources that really helped me on my journey in terms of getting information and advice:

Nancy's Nook - a huge community for those who suffer with / suspect they suffer with endometriosis, specifically I used the list of Nook approved doctors to choose my surgeon (many users also post reviews of their surgeons on the Facebook group)

Endometriosis UK

Mayo Clinic

World Health Organisation

Endometriosis.org

I really hope this post was helpful and please comment below if you have any questions I've not covered off in this post!