Adenomyosis Diagnosis & Health Update

Content warning – Health/Weight/Food

Adenomyosis Diagnosis & Health Update

It was around this time last year that I decided I wanted to make some lifestyle changes, for various reasons. I can’t recall the exact timings but not long after I started getting really bad pains in my stomach like I’ve never experienced before and nothing would ease them.

I ignore any extra pains a lot of time and put it down to just a bad day/flare because some GPs are just such hard work when you’re already chronically ill. Luckily, there was a new and very helpful junior GP at my surgery last year who was probably the best doctor I’ve ever come across, so I kept following up about these new symptoms I was having.

Whilst waiting for tests and trying out some medication, I ended up in an ambulance to A&E one morning after being in extreme pain and throwing up all night. I was seen my an out of hours GP not long after arriving and he suspected it was my gallbladder but I’d have to wait for my GP to refer me for an ultrasound.

Private Ultrasound

Weeks went by and I was in so much pain so I looked into booking a private Ultrasound scan. It’s such a massive privilege to be able to have private tests and appointments, I really do want to point that out. It cost £190 via Ultrasound Direct for a Upper Abdominal & Pelvic Scan.

I went with this place because lots of others needed a GP referral and I just couldn’t deal with my GP for it. So at Ultrasound Direct I could get one without but I did have to go from Sheffield to Oldham, so if you’re happy to travel it’s definitely an option.

The NHS is great at times but it’s severely overstretched and underfunded. I’m already in daily chronic pain and have been for 10 years this Summer, so all these pains on top were a lot to deal with.

At this scan I found out that not only do I have gallstones, but I also had Pelvic Inflammatory Disease (PID), and an ovarian cyst. The ultrasound technician was extremely friendly, caring, and also noted that she thinks I might have Adenomyosis.

I was allowed to ask any questions, and she went through step by step everything she was checking and how it looked. She explained everything she was seeing and why she thought I had Adenomyosis.

I really do recommend Ultrasound Direct for extremely easy booking, professional staff, scans on the day and also digital copies emailed to you straight away too. It’s a huge privilege to have been able to afford this and without it, I would have never found out about the PID or Adenomyosis.

I contacted my GP with the results of my ultrasound and was immediately started on antibiotics for the PID. To show on an ultrasound means I had it for probably over 6 months without knowing. I was also referred for surgery for my gallbladder based off this scan too. It really got the ball moving so much faster.

NHS Ultrasound

A few days after I had my private ultrasound, my NHS ultrasound appointment came through for in a few weeks time. I decided to leave my booking as it meant I could check that the PID had cleared up and it also meant it was easier for all my appointments going forward as it was a little difficult to get my private scans uploaded to my NHS account.

At the NHS ultrasound is was so different to the private scan, the ultrasound technician was unfriendly and I couldn’t see the screen. Questions seemed discouraged and I felt very uncomfortable. This was made worse when she needed to ask permission from a senior to do a pelvic examination, even though that was on my referral, she wasn’t planning on doing it, and knowing that it was gallstones causing my pain, I wouldn’t have pushed for it either. Which means I would have never found out about the PID or Adenomyosis.

Her senior came in and I explained why I wanted it and she was extremely rude and unfriendly. She laughed at me when I called it a ‘gallbladder attack’ and said that many people have gallstones and aren’t affected, so I used the correct terminology (cholecystitis) and explained I had been in ambulance to A&E for it. She was less rude after that but it felt very unneeded and unnecessary. I don’t imagine anyone has a transvaginal ultrasound scan for a fun day out.

The ultrasound showed more gallstones and that I still had free fluid in my uterus which worried me.

Back to my Regular GP

The really great junior GP had left at this point and I was back to my regular GP. Over the years she’s been mostly good with me but I was so shocked at how unhelpful she was, just stating that it’s fine to have some fluid there even though everything on Google was saying nope. She asked me what I wanted her to do, so I asked for a referral to a Gynaecologist. Dear reader, that was in August and I still haven’t seen an NHS Gynaecologist.

Private Gynaecologist

I was so worried about this free fluid and that maybe the PID hadn’t cleared, everything says the longer it’s left the more problems it can cause. So I looked into a private Gynaecologist and went to see one via The Circle health Group. This cost £180 and honestly I thought it was a waste of time. He was very rude, fatphobic but said he’d ask someone to refer me for an MRI if they thought it was appropriate after looking at my scans.

It was only after looking through my GP history that I saw how much work he and his office did, with referral letters, follow ups, asking for more tests. After my MRI he confirmed my Adenomyosis diagnosis and wrote to my GP surgery.

I know most people wait years on years for a proper diagnosis and because of the private scan and this private appointment, I got it within months and I am incredibly grateful.

Adenomyosis Diagnosis

I’ve always had such horrible painful periods but I thought that was just my cycle. For the longest time I’ve been on the depo injection as it does stop my periods but whenever it’s close to running out, the pain is so intense I can barely move. With so much going on in my abdomen at the moment I really couldn’t specifically say how much Adenomyosis is affecting me currently, I have burning pains across my stomach every night now, I’ve had random days of really intense stomach pains, I get lots of different pains all the time, every single day and it’s just so much to handle. I’ve had molten skin on my back from my heat pad for years now to ease my chronic pain but my stomach is now heading that way too.

Weight Talk

I haven’t been able to eat much with having gallstones as it causes intense pain which means I have lost quite a bit of weight. I won’t be saying any exact numbers and I won’t be posting any before and after photos. I’ll simply just put the size of my clothes on whatever post as I’ve always done as a plus size fashion blogger.

I know weight talk can be triggering for a lot of people which is one of the reasons I’ve kept this private. Also because being a person who posts online seems to make people act very weird and entitled towards your life and have opinions on everything that they know nothing about.

My mental health has honesty just been too low to deal with this side of the internet. This has been so mentally draining and I’m in more pain than I’ve ever been before, it’s constant and it’s been horrible.

Although it started off as an intentional lifestyle change, it has been exaggerated by my gallbladder and now that people are noticing and commenting on it more, it was time to talk about it all in hopes that I could maybe help someone else and also to ask for some advice too.

Gallbladder Removal Surgery

I’ve finally got a surgery date to have my gallbladder removed, although I think that might be delayed now as I didn’t realise I had to be the one to tell them that the Gynaecologist also wants someone to look at my uterus too to see if I need any surgery for the Adenomyosis.

Update 2025: One year post surgery and I didn’t need further surgery on my Adenomyosis. I mostly control this by staying on the depo injection, now Sayana Press from home with a private prescription because it was too difficult with my GP. 

It’s getting to the point where it’s consuming my every thought, I’ve never had surgery before and naturally I’m very worried, so I’d feel more comfortable being open about everything too. I’d love to hear any good and positive stories from you all! Any tips or advice are more than welcome and I’m more than happy to answer any questions if you think it’d help you.