During these past months I had the pleasure to chat with Harpreet Sohal (she/her) a young woman from Birmingham about her journey with endometriosis, what helped her cope with the physical and psychological pains of endometriosis, the importance of having a support system around, Turkish salads and more.

Hello Harpreet, thank you so much for being here. To start, could you tell us a bit about yourself—what you’re passionate about, and what brings you joy outside of your endometriosis journey?

I am passionate about art, making things with my hands, crafting and photography. Outside of my endometriosis journey I find joy in stretching and documenting my life in a way that feels good in the moment (that could be photos, sketches, journaling and things similar to that)

Do you remember what your first period was like? Did you notice anything unusual or difficult from the very start?

Sort of, I remember feeling ill, not in pain, just nauseous. I imagine that was probably the start, but I never realised or even thought about that until now!

When were you diagnosed with endometriosis?

I think it was few years before covid, I can’t remember much about when it was, but I really remember the feelings associated with it. It was quite overwhelming, as if someone finally validated what I thought all along about my body. I ended up crying for a portion of this, because I remember the treatment options to deal with the symptoms were all pretty horrible and didn’t really get to the root cause. The options felt like putting a plaster on a giant crack and hoping it would hold. 

Can you walk us through your journey to getting diagnosed with endometriosis? What were those early conversations with doctors like, and how did it feel emotionally to finally receive (or wait for) a diagnosis?

The diagnosis took a very long time, I think maybe 10 years. Doctors just didn’t really know about it when I was trying to find out what was wrong. I was offered tablets to deal with sickness, the contraceptive pill, I tried most avenues, but none of them really worked for me. I ended up doing a lot of research into my symptoms and bringing a few thoughts about it to my GP, who told me they didn’t know enough about it but referred me to a gynaecologist. I wasn’t too emotional about waiting for a diagnosis as I went through a period where I gave up, it seemed pointless to go to the doctors to be prescribed another pill. Receiving the diagnosis was different. I think I mentioned it in the point above, but I cried once I’d processed what happened. You spend years of your life in pain and not really being able to live your life and have a life that everyone your age and people in general have. You miss a lot of life, but when I was finally diagnosed, it felt a little like a weight lifted off me.

What impact did this process have on your mental health? How did you cope during that time?

I have no idea, I don’t remember too much about this side. I just remember isolating myself from friends. I’m very lucky in that I have a support system with my family. I remember a couple days after me and my brother watching a movie that he definitely didn’t want to watch and eating sandwiches because I was depressed (I think). I think that’s how I got through it, just being able to lean on my family.

How has your support system—friends, family, community—helped you manage both the physical and emotional challenges of endometriosis?

They’ve been very very helpful. From my mom doing research and finding food that’s not inflammatory, my dad finding podcasts about endo and telling me about them in case they help, to my little sister hanging out with me and nursing me back to health when I was too ill to get out of bed. My friends usually check in on me and make sure I’m okay and offer help when my pain is very difficult and I can’t walk - I never really want to bring attention to endo etc, but I’m lucky in that my friends offer help alongside my family.

What kinds of treatments or pain management options were you offered by healthcare providers? Were they helpful?

I was offered tablets, contraception, injections, hormone replacement therapy to go with the injections and operations. I took the first 2 options, I never really took up the last couple. I never found anything helpful, and it always felt like nothing would solve it. When I asked further questions to doctors, everything was just skimming over the issue. I understand that there isn’t enough research done, but if I ever came off any of these suggestions (in terms of tablets and hormone replacement therapy) what would my life be? Would it be worse as my body re-regulates itself? It was pretty bad as it was, I didn’t really want to take the chance on it being worse. 

Was there a turning point where you found something that started to ease your pain or improve your quality of life? What was your life like before that change?

The turning point for me is when I started going to the gym frequently. Prior to that I did yoga once a week. I remember I’d exhausted all other options in regards to pain and not being bedridden for half of every month, I had a conversation with my brother and he said “why don’t you try going to the gym? You’ve tried everything else but this, you never know until you try” so I tried it. Prior to this I would be in frequent pain, I would be really sick and I would be bedridden pretty much every month. It started to ease the symptoms, but it did take a few years to start to take effect (in terms of symptom reduction)

How does physical activity fit into your life now? Do you feel that movement or exercise has played a role in your emotional well-being or self-acceptance?

I make sure I try to exercise because I know it’s one of the reasons I’m able to have the life I currently lead. It definitely helps my mental health and emotional wellbeing,  without it I can end up very anxious and depressed (especially before my period) because my flare ups also affect my mental health. 

Have you found that understanding your own body and mind has helped you advocate for yourself more effectively in medical or personal spaces?

Definitely. I think it has meant that I know how to check in with my body, when something is off and just doesn’t feel right for me. I think if I didn’t go through all of this, I wouldn’t have known. I think when you have something like endo you have to (whether you like it or not) check in with yourself more often and just know when something isn’t serving you. To begin with i definitely didn’t advocate for myself, but as I’ve progressed through this journey I definitely do now. 

Has diet played a role in managing your symptoms? Are there any specific foods or routines that have made a difference for you?

Massively. I went through a period of experimenting with my diet to find out what made the flare-up easier to deal with or worse. For me, fried food makes everything 10 times worse. However, on the flip side of this, there is a turkish salad recipe that reduces my symptoms, so much that sometimes I don’t have any symptoms! Also having a routine really helps, it helps my body reduce its cortisol and keeps things positive for recovery. 

When pain knocks you out, how do you deal with the emotions that come with it—like guilt, frustration, or feeling powerless?

Currently journaling. In the past I’ve been to therapy and that was really helpful. I was able to get coping mechanisms from it that still help to this day. But sometimes, I still just cry, because at the end of the day it’s something we have to cope with and deal with every day! It can restrict your life in such insane ways!

How do you take care of your mental health now? How has your emotional coping evolved as you've dealt with endometriosis over time?

Mostly journaling and art. It’s evolved quite a bit. It’s gone from not coping to building up resilience bit by bit. I definitely wouldn’t have gotten here without going to therapy, though. Talking to someone completely outside and not attached to the situation helped significantly as no one really understands the experience (unless you’ve been through it)

What advice would you give to your younger self?

I think I would say to keep researching and doing what you’re doing. If things had changed I wouldn’t be where I am now. But maybe, try going to the gym sooner and find someone who also knows about endometriosis to work with.

How would you describe your endometriosis?

I imagine my endo to be a really spikey monster. Rears its head and causes pain. And also, red, not sure why…

Are there any books, websites, podcasts, or communities that helped you on your journey that you'd recommend to others going through something similar?

https://www.youtube.com/watch?si=D952-QAXnAeZdXV_&v=xeoiPbg55Ec&feature=youtu.be - this is the turkish salad recipe. I don’t even remember most of the websites I visited etc that helped me, but this is definitely something people should try to see if it helps!