endo, early diagnosis, and blogging
By: Fela M'tima
FELA: Hey Wendy! Before we talk more about your journey with endo, tell me a bit more about yourself, age, where you’re from, and what you do!
WENDY: Hey Fela! I’m 32 and from Norwich in the UK. I’m a Supervisor for a high street coffee chain within my local cinema and just returned to blogging after a break.
FELA: I read your article “Not Too Young For Endometriosis” which I really related to, seeing as I was diagnosed at age 22. Can you explain more about the article?
WENDY: It took 17 years to get my diagnosis, I knew what was wrong with me for years but the doctors wouldn’t listen and kept fobbing me off with drugs. I am relieved to see more younger women fighting back and getting their diagnosis early. If someone had listened to me from the start my body may not be in the state it is today. By sharing my experiences I hope to help women understand endometriosis and associated diseases.
FELA: Like myself, you also have adenomyosis, can you explain more about adenomyosis (I feel like it isn’t spoken about enough) and how adenomyosis affects you?
WENDY: Adeno is the cousin disease of Endo, they are not the same and often confused. Women can have Adenomyosis without endometriosis and vice versa. It was something I had considered I might have and tried to speak about it with a nurse once who blanked me as if I hadn’t spoken and changed the subject. It really isn’t as well-known as Endo but it can cause so much more pain. For me it makes me bloat up like a balloon and feel really uncomfortable. The pain during my monthly would spread from my chest, which would make me feel like I was on the verge of a heart attack, to my calves, which would tense up due to the pain.
I received my diagnosis after a laprascopy to determine endometriosis with my new surgeon. He suggested that I consider a hysterectomy as the Adeno is advanced. I am awaiting my next appointment with him to give him my decision.
FELA: How has endometriosis affected your day-to-day life and how do you manage it?
WENDY: It’s odd how only after my diagnosis people are treating me as someone who needs support, like just having a name for my problems has weakened me. Actually it has strengthened me, it’s given me a reason to fight. I was looked down upon by friends/boyfriends/managers/peers, because they thought I was just seeking attention or didn’t care about my job, for years! I remember being unemployed after college and thinking how the hell I was going to hold down a job when I was always in so much pain. So I learnt to hide it. I needed to work, I had bills to pay like everyone else and seeing as the doctors didn’t know what my problem was there was nobody I could go to for help.
Nobody should have to hide what’s wrong with them.. no one. For me it became a way of life. I stopped going out on my days off work so I could recoup. I never drank alcohol and used other reasons to hide why, simply I just didn’t want to feel anymore sick than I already did. Boyfriends thought I was just being awkward and employers thought I was just a sick note. I would hang on to jobs by a thread. Now I don’t have to hide anymore and I’m surprised at how much support I’ve received.
FELA: How do you think a late diagnosis affected your treatment for endo and adeno? What do you think needs to change for us women to get earlier diagnosis?
WENDY: General doctors and nurses need to be better informed not just specialists. Had it not been for the online community of women with the same disease I would never have found my current surgeon. I will always feel that if I had been diagnosed early maybe I wouldn’t be facing a hysterectomy aged 32.
FELA: I really agree. This disease can progress so quickly that early diagnosis’ is really the best option. I see you’re really into fashion. Tell me more about it!
WENDY: I studied Textiles and Fashion at college. I really wanted to go away to University but my shyness coupled with my pain stopped me. I managed to get a Higher National Diploma but unfortunately I never managed to pursue a career within the field of fashion. I always felt I wasn’t good enough, that I didn’t know enough. Through my blog I hope to share some posts related to my love of clothes and how they make me feel.
F: I’m so glad you’re sharing! Does health, beauty, and fashion help distract you from the emotional side of chronic illness?
W: Yes! It’s really therapeutic to do “normal” things. I can escape the disease which has taken over my life by taking time out to apply makeup and play with clothes. I also have a qualification in makeup artistry and the time I spent learning the techniques and sharing tips with other students really made me feel more like me again.
F: That’s incredible! What have you found to be the most successful route of your treatment?
W: Talking to other women online, learning about the disease myself and making myself an expert on the diseases. No one else was going to help me so I had to help myself. I highly recommend joining groups on Facebook and asking questions.
F: I really enjoyed your blog, by the way. Was it being sick that inspired you to start the blog or was it something else?
W: I’ve been blogging on and off for years but it always felt false, like I was trying to follow the crowd. I would quit many a blog over the years despite the time and effort I put into it. When I came about the idea for ‘Not too young for this’ I was at a very low point and feeling like no girl should have to feel like this. I only have a couple of posts up so far but I plan to post twice a week and see where it takes me. I hope it helps someone to feel less alone with this disease.
F: I see that not only do you have the article we spoke about “Not Too Young For Endometriosis” but you also mention it more than once on your site. I think it’s hard for us women to see so many doctors telling us we are too young to have a disease that actually forms at such a young age. Do you think anything will ever change? Do you think the medical community will ever take us seriously?
W: Yes. It already is. So many more women are speaking out and Doctors are taking notice. When I first went to see my new surgeon he asked “Why come to me?” I explained about a group on Facebook where I’d seen a list of specialists reviewed by real women with my problems. The fact that he cared that these women wanted to come to see him and that they rated him so highly shows that we are slowly starting to make a connection with the medical community. The more we shout about this disease the more we will make an impact.
F: Yes! As our community grows, so will an understanding supportive medical community! As we wrap up, I want to say how thankful I am for you to take the time for this interview. I relate to your experiences and think you are so brave and wonderful! Do you have any advice for women who are suspicious of having endo but aren’t being taken seriously?
W: Get a different doctor, see 15 of them if you have to. Go directly to a specialist and don’t wait to be referred. We have the NHS in England and the waiting lists are months long to see a specialist. My mum very kindly gave me the money to make my first appointment with my current surgeon and now I am on his NHS list. Had I waited to be referred I fear I never would have got to see him as the NHS prefer to keep you within your catchment area.
No one can tell you they know more about your body than you. Be heard.
You can check out Wendy’s blog here.