Health

Phlo Perspectives: Endometriosis and me - Jillian's story

October 26, 2022
8 minute read
Mairead Quigley

Endometriosis is an increasingly common gynaecological condition which affects around 1.5 million women in the UK. It’s only in recent years this chronic condition has come to be recognised as more than ‘period pains’. Sufferers are coming to terms what it means for them.

We spoke with Jillian, who at 29 years old, has been on a 14-year journey of pain, bewilderment, coping strategies and finally, diagnosis in 2021. But what does post-diagnosis life look like for Jillian and can her official diagnosis make a positive change to her daily life with endometriosis?  

Phlo - Endometriosis symptoms are often misdiagnosed and the journey to diagnosis can be long and challenging. This must have been frustrating for you. Can you tell us about your diagnosis journey, how it felt and any advice you'd give anyone who thinks they could have endometriosis?

My diagnosis journey was one of the lucky ones. When I finally went to the doctors, to the time it took to be diagnosed, it only took eight months from initially going to the doctors to the time I was admitted into day surgery to have my laparoscopy. When I was finally given an appointment to speak to my consultant, it was right in the middle of lockdown and via a video link. In my mind that meant that I was going to be on the waiting list for the longest time and from hearing stories from other people with endometriosis, I assumed I would need a scan or MRI. Thankfully I had a consultant that is very high up in the gynaecological world and he knew that would be a waste of time, and from the details I gave of my symptoms, he had a pretty good idea that I did in fact have endometriosis and referred me straight to day surgery for a laparoscopy. Two weeks later I received my letter from Stobhill day surgery with a slot, due to a cancellation, two weeks after the date of the letter. So, all in all, from speaking to a consultant to receiving my surgery, it only took four weeks. This is pretty much unheard of and I know I am one of the lucky ones. Waking up from the surgery and being told I did in fact have endometriosis was very much a double-edged sword, as after 14 years of pain I finally knew why and where it was coming from, but it was also the realisation that I now have to live with a lifelong chronic pain condition. The advice I would give to anyone who believes they have this condition is do not give up, ever. You know your body so much better than anyone else ever could. Even people who have had surgery in the past have been misdiagnosed, so if you feel something is not right then continue to fight. Second, third, fourth opinions are allowed!  

Phlo - How old were you when you first noticed symptoms and how old are you now?

From the day I started my period at 14, I knew I was different to the other girls in my class. None of them had to take days off or be collected from school due to throwing up or passing out from pain. For years I was told this was "normal" and I was just one of the "unlucky ones" that had to deal with more painful periods than most. What ensued from this was a constant battle with my GP being on different pain killers and contraceptives to try and manage my pain. The majority of the pain killers would make me sick and the contraceptives did not agree with me physically, or mentally. Anyone that has been on certain contraceptive pills will know what I am talking about!! I am now 29 and was diagnosed at 28, so in my mind that means it took 14 years to be diagnosed. The lack of knowledge of gynaecological issues growing up was very evident. I had never even heard of endometriosis until one of my friends were diagnosed a couple of years before me. 

Phlo - The symptoms can range from manageable to debilitating. How do you cope with this physically and mentally? What are your go-to coping mechanisms?

Heat and strong pain meds are the only way I can deal with the pain when it is debilitating. The biggest piece of advice I give to anyone in chronic agony is invest in an electric heat pad - they're game changing! Mentally, it's really tough. Really, really tough. A lot of my wider friends and family do not have to go through the day-to-day struggles of being constantly in pain so at times it can be very lonely. My mum is a huge support for me though and knows what living with chronic pain can be like as she herself has a chronic condition, so knowing I can go to her and she knows what it is like is a comfort. Day to day, with the manageable pain, it has just become my new normal. It's pretty amazing what the human body can put up with once you have dealt with the pain for so long! 

Phlo - What has your treatment journey been like? Which treatments have been successful and which haven't worked for you?

As I mentioned previously, the actual treatment once I finally went to the doctors was extremely straightforward. However, laparoscopic surgery is not a miracle cure for everyone with endometriosis, and sadly this is the case for me. Post-surgery, I had minimal symptoms for roughly six months and it was such a glorious time! Now, 14 months post-surgery it is as if I never even had any adhesions removed, and in some ways my pain is worse than it had been previously. This to me means that my endometriosis has spread to places it hadn't been before and this is quite a disheartening thought. I think that the reason endometriosis is such a big unknown is due to the fact that symptoms and recoveries are all different for each individual suffering with the condition. 

Phlo - What do you want people to know about life with endometriosis?

That this is a real, chronic condition. The pain is real and the days we speak about it means we are really struggling. I also believe it should be taught as part of sexual education in school. The amount of men, and even women, that aren't aware of what endometriosis is I find, frankly, quite frightening. 

Phlo - How has this condition affected your work, home and social life?

It has affected me in every way you can imagine. Luckily, I have worked with people that have been extremely understanding on what I am going through and that some days I do have to work from home due to the pain. I think the hybrid working systems that have come out of lockdown have been beneficial in this sense. I always refer to this, as I feel it is an area that isn't spoken about enough, but my social life in terms of romantic relationships and sex have suffered massively due to this condition. It is well known that painful sex is one of the main symptoms of endometriosis, so being a single woman and trying to make a romantic connection with someone, but in constant agony, doesn't exactly have guys queueing up at the door to stick around. This can be extremely upsetting at times, but it has also made me come to a realisation that I am quite resilient and independent and therefore if I don't meet the man of my dreams, it won't be the worst thing on this planet. My friends are extremely understanding though, and on the days I say I am in too much pain to do certain activities with them they don't hold it against me. 

Phlo - Can you recommend any helpful resources you've come across eg websites, community groups, blogs, endo influencers?

Endometriosis UK Facebook Support Groups (local to your area - Glasgow for me) are a godsend. It's a place where you can speak to likeminded people who understand exactly what you are going through, and no question is ever too daft. The Endometriosis UK website/socials are also a great place for information. In terms of influencers, there is definitely a lack of these in general, but Steph Owens is a local tattoo artist in Glasgow who is great for information and also the Endo Monologues. I also follow a more tongue in cheek cartoon page called Trutherus which creates cartoons on how your uterus/ovaries go through so much with endo! 

Useful resources

Endometriosis UK - https://www.endometriosis-uk.org/

Endometriosis UK Facebook support groups – search on Facebook for your local group

Endometriosis UK Instagram support groups – search on Instagram

The Endo Monologues - https://www.theendomonologues.com/

Trutherus - https://www.instagram.com/trutherus/

If you want to talk about your gynaecological health or are worried about any unusual symptoms, get in touch with our friendly pharmacy team who can offer you advice and guidance.

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