My name is Jaiya and I am the founder of DAYBYDAYCOLLECTIVE.
My Adenomyosis and Endometriosis diagnosis experience has opened my eyes to the challenges that occur alongside a diagnosis journey.
Our mission is simple:
1. To provide support and community for both pre and post diagnosis through accessible online events and workshops.
2. To provide support that works for you, by breaking down our workshops and events into relevant topics so you can find the ones that best support where you are in your diagnosis journey.
3. To create comfortable, accessible online spaces to socialise and connect, through our Book/Film clubs, Coffee Mornings and Catch Ups.
4. To provide a safe and comfortable work environment for people with Chronic Illnesses and/or Disabilities. By supporting us you are helping people who struggle at work/cannot work due to their diagnoses!
My Adenomyosis and Endometriosis Diagnosis Journey
September 2024
October 2024
November 2024
December 2024
January 2025
March 2025
September 2025
March 2026
A few weeks after I moved to London I experienced a period that felt incredibly different. It was heavy, and I found it difficult to move. Paracetamol wouldn't work, and my stomach began to inflate. I felt intense nausea and when I looked up my symptoms online, they matched those of a miscarriage. I wasn't sure what to do, and as I had just moved to London my GP registration was still in progress, so I went to a Pharmacist for some advice.
I was given incorrect advice, that it sounded like a miscarriage so I may as well go home (I have since learnt that if you are having a miscarriage you have to be seen immediately), but if the bleeding didn't stop after ten days I should go to a Sexual Health Clinic. I waited for the bleeding to stop and it didn't.
My first visit to the Sexual Health Clinic. The bleeding wasn't stopping and the inflammation and nausea was getting worse. I was treated for Pelvic Inflammation Disease, and after an internal exam raised suspicion I was referred for an ultrasound. I always share this because it's important to note that you can see gynaecologists a lot quicker by visiting a Sexual Health Clinic. I wouldn't have thought that until I experienced it myself.
Two weeks later I returned for a check in to see how things were going on the PID medicine. My inflammation was down a little, but nothing had changed significantly enough. This was an indicator that the ultrasound was the right route to go down.
My symptoms were worsening and my panic and confusion were increasing. I had my ultrasound and waited for the results. It was on these results I saw "suspected Adenomyosis". I had never heard of Adenomyosis before. Looking it up is terrifying, as the internet says there's no cure, except a hysterectomy (which is terrifying to anyone, especially at 22 years of age). It was here I was told that I'd need a GP appointment to refer me to a gynaecologist. All of a sudden my panic changed direction, this wasn't a case of figuring out what I had, but also whether my fertility would be impacted and whether I'd need a hysterectomy. If I had Adenomyosis it was one thing, but I needed to know how severe.
The GP sent off my referral. The period hadn't stopped. It had been 4 months. By December I had been to A&E just under ten times due to the pain.
In January I wondered what's happening with my referral. I hadn't heard anything and there were no updates on my NHS app. I called the GP, and they told me that I had missed their phone call in December, and so they cancelled my referral. I checked my phone history and I hadn't received a call.
I fought to speak to the surgery manager to find out how this mistake could have taken place. They assured me that they will have my referral sent out by the end of the day.
When I check my NHS app, their referral was two lines and didn't display an ounce of information that could be deemed by a Gynae as anything to worry about. Naturally, my referral was rejected.
I called the surgery manager to complain, and then because I didn't trust them to write the referral, pushed them to write the referral whilst on the phone to me, and I would approve it before it was sent. They advised me that putting in too much detail would lead to a rejection. I was accepted by a Gynae within two/three days. The appointment was booked for the 14th of March.
I got the Minerva Coil in preparation for the appointment so that they wouldn't send me away, asking me to come back once I'd tried the coil.
In March I was diagnosed with Adenomyosis. The Gynae suggested that due to my symptoms it was likely that I had Endometriosis. They wanted to rule out Bowel Endometriosis (based on my symptoms) so I was referred for an MRI.
Naturally this was a very difficult month. I thought things would get better because I had a diagnosis. I was left to process things, but I was back in this pre-diagnosis grey area about Endometriosis.
By March my bleeding had stopped, which we assume was because of the coil.
In September I was diagnosed with Deep Infiltrating Endometriosis. It was visible on the MRI results and Bowel Endometriosis was ruled out. My symptoms had calmed and my quality of life was returning, I assume because of the coil and an anti-inflammatory diet. Surgery was not recommended due to the position of the Endometriosis, behind my Cervix, however I was advised that I'd know if things were getting worse again if my symptoms were getting worse.
One year later and I am learning to live with my diagnoses. I've created the space that I needed and still need.