“I Know It Sounds Dramatic, But I Thought I Was Dying” – Endometriosis, Jess’s Story

Here she is, the first brave and totally fabulous vagina on Gash Gossip, Jess. *HI JESS* Today ladies, we will be chatting all things Endometriosis. En-do-me-tri-o-sis. What a mouthful. A condition that effects 1 in 10 women in the UK, is the second most common gynaecological condition in the UK and effects 10% of women worldwide, which is a whopping 176 million women. So you know, just a little bit important for women to be aware of. However, the more I’ve raised the topic to my gal pals, I’ve been greeted with quizzical, sometimes blank expressions followed by “Endometri-what now? I’ve never even heard of that!” A lot of women still don’t have a clue what it is or more importantly that they might be suffering from it. It could be playing a big part in young women’s lives during the monthly visit from Aunt Flow, during sex, and some are in crippling pain all the time but “it’s nothing dear, don’t worry about it”. Most woman are told to put it down to ‘bad period pains’ or being ‘stressed’. It is only through friends sharing their stories with me that I have learnt what it is and so today I am going to be your endometriosis godmother and hopefully raise some more awareness. 

 

So Sophie, please enlighten us! What is endometriosis?” Well, my understanding is this: the tissue that lines your uterus grows outside of your uterus and on other organs in that region… NHS.com, am I right? 

“Endometriosis is a condition where the tissue that lines the womb (endometrium) is found outside the womb, such as in the ovaries and fallopian tubes. Endometriosis mainly affects girls and women of childbearing age. It’s less common in women who have been through the menopause. It’s a long-term condition that can have a significant impact on your life, but there are treatments that can help.”

Close enough.

I’m a visual learner and fancy blogger these days and so have inserted a diagram to show where else the endometriosis can grow.

Endometriosis.png

So yeah, it looks and sounds pretty effing awful. Imagine your periods x100.

Now we’ve all been acquainted, let’s get back to Jess because if you’re still trying to get your nut around it and you’re looking for details at a more personal level then you’re in the right place.

How would you describe endometriosis Jess? 

“Um, f***** painful Soph?” 

Right, well we better get started then!

Let us set the scene. Jess is 14. She has a side fringe, blue hair at this point and loves Zac Efron. She’s just started the Big P. The moment in every girls life when they look down at their Spongebob knickers, see a red-brown-ish smear and suddenly they are thrust into woman-hood even though they still wear Spongebob knickers (just me?) Then the monthly dull ache in the pit of the stomach kicks in, followed by a churning sensation and the womb and bowel appear to be doing barrel rolls down a very steep hill again, and again. Horrible!

Here are a few other descriptions of period pain for you, which one most describes yours? Mine is normally a mixture of 1 and 4:

  1. “Imagine your emotions are placed on a keyboard, then someone is slamming their hands on the keyboard. All you want to do is sleep and sit on something soft.”
  2. “Like someone is grinding my insides into liquid and they’re leaking uncontrollably out of my vagina.”
  3. “Like someone glued and duct-taped the inner wall of my uterus and then started violently ripping it off. And on top of that, you have diarrhoea.”
  4. “I want to kill someone.”

But Jess’s are bad, to the point where she is over heating, sweating buckets, constantly pooing, vomiting and passing out, on top of all the other symptoms we know and love. She is missing lessons and spending a lot of time lying on the sofa in the nurses station at school with a hot water bottle strapped to her stomach thinking “how can I go on like this for the next 40 years? For so long everyone told me it was just something that will pass, no one ever really addressed it… maybe because I was an actress everyone thought I was being over dramatic.” 

Jess carried on like this for 4 years, taking days off school, refilling that trusty hot water bottle and curling up in a ball for a week of every month until the pain subsided. At 18 she marched herself to the doctors, pointed at her bits, and said, there is something wrong with me! “HELP!” (Sounds familiar). The doctor listened to her symptoms and suggested she went on the contraceptive pill, Yasmin. “It was supposed to be the good one!” As the doctor ordered, she did, for 2 years. During that time she was in a relationship with a man, so that came in handy and for the first time since getting her period, she wasn’t experiencing pain. IT WAS A MIRACLE! Yeah, but only because she was taking the pill back to back, stopping her periods from actually coming. Jess was, as I am, a firm believer that the female body needs to bleed. It should bleed when it wants to. Every month. I once tried to take the pill back to back and bloody hell, my body went into an absolute meltdown. My emotions had no where to go! I turned into the menstruating monster and vowed never to do that to my womb again. I guess for some women, that is not the answer.

Pressing fast forward on our magical life-remote-control and Jess, 20, has now moved to London, drives a little red car, has better taste in music and is in a same sex-relationship. Therefore, she made the decision to stop filling her body with unnecessary hormone, stop taking the pill and have some periods. Life was good. Jess brought her first sofas and cushions to match but her period pains were back with a vengeance and no remorse. “I was supposed to being going to a friends house and I remember the pain came on suddenly. It was so excruciating that I called 111. I genuinely thought something was seriously wrong with me. I could barely speak down the phone.” Jess crawled back in to bed, took some Co-codamol, closed her eyes and hoped when she woke up the pain would be but a distant memory. Not quite. Her usually reliable painkiller friend couldn’t even muster the strength to defeat the demons stamping in her uterus. It was time to make her first gynaecology appointment, because after some much needed Googling, Jess thought she might have Endometriosis.

Gynaecologist: A valiant, mystical vagina Queen or King who is willing to delve in-between our legs and explore our nether regions for us.

“I came away from that first appointment thinking, oh, I don’t have endometriosis. The gynaecologist had convinced me that I didn’t have it.” Jess had all the obligatory pokes and prods, as well as an ultra sound and internal exam “with a long stick that had lube on the end of it. Horrid. Plus it had been a while since anything that shape had been up there!” The gynaecologist explained to Jess that from what she could see everything looked normal and the scans supported this verdict. But! As often is the case with endometriosis, you cannot see it unless you have a laparoscopy. Only then can you determine whether your lower organs are in fact knee-deep in endometriosis.

Laparoscopy: “A surgical procedure in which a fibre-optic instrument is inserted through the abdominal wall to view the organs in the abdomen or permit small-scale surgery.”

The ‘gynae’ explained to Jess that she didn’t like doing the procedure unless she was 100% sure she was going to find endometriosis and that the best thing for her to do was to monitor it for 6 months or go back on to the pill. The pill was out of the question for Jess who had previously been on Roactuane to get rid of her acne, “I wasn’t going to jeopardise all that time I had spent trying to sort out my skin by pumping more hormones into my body. I was done with pills, hormones, things in my body that shouldn’t be in there! So I thought I should just suck it up and deal with the pain.” Which is what she did.

Cut to now, 2018, and Jess is 23. This is the penultimate chapter and turned out to be the last straw for Jess. A couple of months ago she was halfway through a civilised lunch with her girlfriend when out crawled the evil ‘endo’. “I got really hot, the sweats came over me and I knew I had to get out of the restaurant before something terrible happened. I’d come on my period that morning and I knew instantly what was going to happen.” 20 minutes later, after hailing down an Uber, Jess is throwing up out of the car door in the middle of Piccadilly Circus. “I was close to death. I knew then I had endometriosis and it was time to get my sh** together.”

So finally, we are here in the present day, at the final chapter. Jess has just walked in to Dr Andrew Kent’s office, a specialist in endometriosis. She has described her symptoms and he replies, “you need a laparoscopy. See you in 4 weeks.” Thank god for Dr Andrew Kent. Jess was lucky enough to have private health care on this occasion, so the waiting time for the surgery was short. I am unsure how long the waiting list is on the NHS but I have a friend who is still waiting for surgery and has been since January!

“The day of my surgery came and I was sooooo nervous. I hate needles and I had been watching too much Grey’s Anatomy. I wrote a note in my phone in case I died during the surgery because 0.8% of women do… what if I was that 0.8%?! I wanted people to know that I loved them and what song to play at my funeral. The surgery went well and yes, I did have endometriosis which has now been removed. I’m left with a scar in my belly button, one just above where my pubes start and the other to the left hand side, forming a little triangle. I am pain free for now and so happy I pushed for the surgery. Push for that laparoscopy is my one piece of advice! Because when you know, you just know.”

Jess was right to persist. WE KNOW OUR BODIES! Her right ovary was tucked in on itself due to the swelling that endometriosis creates and had got stuck to the side of her uterus – no wonder she was f****** vomiting in the middle of Piccadilly! She also had traces of endometriosis next to her bowel which would explain her IBS like symptoms.

Here is the formal post operation notes that she received:

She has a deep nodule of endometriosis involving the insertion of the left uterosacral ligament and her right ovary was firmly adherent to the side wall, possibly due to endometriosis. All adhesions were divided and the endometriosis excised with the Harmonic ACE.

(Jess and I had to Google most of these words too! E.g the uterosacral ligament.)

Jess is, for the time being, endometriosis free. Unfortunately it can grow back, in a couple of months, a year, 3 years. Until then Jess is enjoying life off of Co-codamol and relaxing at sweat free lunches with her girlfriend. She has had her first post-op period and she didn’t have the unnerving urge to poo or faint! Yay! It is down to her persistence, strength and knowing her own body that she is better. The more I delve into women’s health, the more evident it is becoming that we women have to take initiative when it comes to solving the problem.

As with most things, endometriosis probably has a whole host of symptoms and side effects which are different depending on the person. Every vagina is different and therefore so is every story. I would love to hear from more of you who, like Jess, have suffered with the condition or think maybe you might be. Jess’s symptoms mainly occurred whilst on her period, however I am aware that some women live in constant pain caused by endometriosis whether they are bleeding or not. Hats off to you all. You’re amazing.

 

For more information on the topic, I am directing you below to some excellent content that helped me understand the condition better too. I am not an expert, I’m just a vagina keeno (weirdo), I want to know all there is to know, spread the word and help raise awareness for vagina related issues. By vagina I also mean all of the female organs. It is all related, the vagina is our way through to discovery and knowing what is actually going on up there!

1. “The Lemonade Lab”(lemonadelaboratory.com AKA one of my oldest friends Gemma). My surrogate sister from the age of 4 and the woman I go to for all my vagina advice, sex tips, cake porn and general musings over her pretty Instagram and Pinterest. She gives some great tips for surviving endometriosis, specifically sex with endometriosis amongst other good, honest ‘endo’ chat.

2. “Oh my fucking blog” on Facebook. Her post about endometriosis is raw but totally brilliant. Her story is heart-breaking but she comes at it with such force you’re doing nothing but wanting to punch the air for her by the end of it! 

3. BBC Video’s that can be found on YouTube:

‘Menopause at 22’ – BBC The Social 

‘What Painful Sex Feels Like’ – BBC Three 

‘How endometriosis changed my life’ – BBC Stories 

As always, tell me your thoughts, feelings, inner workings of your brain and all your vagina needs, wants and mishaps! I love hearing about them as much as I love talking about them. Never be afraid of getting the answers you deserve and don’t settle until you are and your vag are happy.

Show your vaginas some extra love this week, Gemma from the Lemonade Lab recommends putting some coconut oil down there. Mmm moisturising and delicious!

Soph x

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