Anahita's Story

I started to show symptoms of endometriosis the week before I even got my first period. I spent the week bed-ridden and then my period started, and the symptoms have just continued.

I was very lucky that the first hospital I was referred to immediately suspected endometriosis, but my diagnostic laparoscopy was delayed. I asked to be referred somewhere else which turned out to be very stressful as my symptoms were dismissed at two different hospitals. The only time I felt listened to was when they found out I was a student nurse. I then moved outside of London, and I continued to experience the same situation. I was told that the gynaecology waiting list was 40 weeks long, plus another 2 years to be seen by the endometriosis team and that I perhaps “shouldn’t bother”.

After having 4 weeks of continuous pain and being off sick because of it, I found Endometriosis UK on social media and found out about different clinical trials going on in the country. I decided to contact one of the trials and was directed to one that was happening near me. I contacted them and their research nurse phoned me and got me an appointment with their consultant. I asked her if she needed to hear about my experience or anything and she said, “why would you contact us if you don’t have endometriosis symptoms? I believe you.” It was such a relief and a weight off my shoulders - I’m sure I cried after the call!

I saw the consultant shortly after and he was just as supportive and booked me in for an ultrasound and my laparoscopy. Whilst waiting for the laparoscopy, I was still experiencing pain, so I had a few visits to A&E. I was still being told by gynaecology doctors that I didn’t have endometriosis because my ultrasound was normal, despite the fact that you can’t always see endometriosis on an ultrasound and despite the fact I was also in an endometriosis clinical trial.

I ended up having my laparoscopy on the 1st of December 2023 and I'm unfortunately not sure if they’ve removed any endometriosis, but I do know that I have endometriosis all over my pelvis. When I woke up from surgery, it was the first thing they told me and all I could think was thank goodness I finally have an actual diagnosis!

Endometriosis has impacted me in many ways. It’s such a shame, but I’ve left my A&E job as the pain was getting too much. I’ve missed so much time at school, university, work, social events because of my symptoms. It’s frustrating being that person that’s always unwell, it does feel like people sort of stop believing you when you’re off work or school because of unpredictable pain that doesn’t always happen in line with my period.

I’m very lucky that my partner is an absolute gem, he’ll come with me to my appointments, bring me hot water bottles and pain relief when I need it. He’s so supportive, but it does make me feel bad that I need to depend on him when I can’t move from bed. We now can’t go to an upcoming event because I’ve become so unwell. I had excruciating pain on holiday recently where we had to miss a whole day of doing things as I was in so much pain, he basically had to carry me back to the hotel.

When I’m going out, I also constantly have to carry painkillers and a tens machine around with me just in case so I don’t always have to go home and can continue being out with friends.

I wanted to say thank you to Endometriosis UK for everything they do, they’re part of the reason I managed to get my diagnosis and I can finally say I do have endometriosis, even with my ultrasounds being normal. 

Thank you Anahita for sharing your story. 

Everyone deserves to feel heard when discussing symptoms of endometriosis, be it at medical appointments, work, school or with friends and family. All too often, we hear of experiences like Anahita's in which people feel they were dismissed or not believed. This is why endometriosis awareness is so important, ensuring everyone understands what the disease is and the impact it can have on day to day life.

If you are struggling and would like to speak to someone about your experience of endometriosis, please visit our support services here.

Content note: Experiences with clinical trials vary from person to person and depending on the trial itself. For more information on clinical trials please click here. It is always best to discuss your unique needs with your healthcare team.