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What I Wish Medical Staff Knew About My Endometriosis

Dear Medical Staff,

I came to you years ago, in so much pain. It wasn’t the type of pain that would get better after taking paracetamol; nothing touched my pain. I came to you for help, hoping that as my main point of contact on anything medical-related, you’d give me the right help and support. For years, I battled with you and was dismissed. I knew my own body and knew something was wrong but you thought different. Yes, I hold anger because I was dismissed so much but it has made me even more determined to make change and hope that, in future, no other woman will have to experience that delay in diagnosis and treatment. This is what I want you to know…

I have endometriosis, a condition that causes debilitating symptoms resulting in severe pain, trips to the hospital, surgery, difficult treatments and endless medications. Endometriosis is misunderstood. It’s not just a bad period; it’s more than that. Imagine your own body betraying you and being in pain constantly. If my uterus were a person, I would murder it without hesitation and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me.

Hospital, for me, means I’ve tried everything I can at home and I’m not managing and need your help to make things manageable again. Many of us ladies are reluctant with having to go to hospital; we don’t want this to have to be our only option. We do everything we can at home to try and manage like having a hot bath, resting, heat pads and hot water bottles. I may look well but if you saw my insides, you’d say different. I have stage 4 endometriosis, which means I have an aggressive form of the condition which causes deep disease, organs fusing together, adhesions, constant pain and other debilitating issues. No matter what treatments I’ve tried, the endometriosis just keeps on growing. There’s nothing I can do; it’s all about finding ways to manage the symptoms. This has become my “normal.”

I may not look unwell, but when I come to you, it means I’m really struggling. I may not show it because I’ve gotten so used to hiding and trying to carry on as normal when in pain. I may be that 21-year-old who has been admitted due to a flare-up but if you look at my notes, you’ll see just how much of a fight I’ve had on my hands. I’ve had multiple surgeries, endless medications and going through artificial menopause, being only 20 at the time. It’s a lot for anyone to get their heads around, especially with the information that comes with different treatments.

There is no cure for endometriosis; there are only ways to manage it. Please don’t tell me that “having a hysterectomy” or “having a baby” will cure me because it won’t. It’s not going to magically fix me. It can be upsetting for some of us ladies when you mention having a baby as some women, unfortunately, have difficulty in getting pregnant and can’t have a baby of their own. This can be a difficult conversation for some, so please approach it sensitively. It’s also important for you to remember this condition affects each woman differently and some women can manage their endometriosis through the use of hormones, pain relief or surgery. There is no right or wrong choice; it’s about finding what works best for us. It can also be helpful when you suggest other options like acupuncture as I’m always looking for any other strategies in order to get some relief. I may not seem interested at the time but I personally appreciate you suggesting things.

Don’t be afraid to ask questions. It’s OK to ask about it. I’m not going to react negatively. Sometimes, talking about it can help and make it feel like someone is listening. It’s OK to not know what to say, I don’t expect you to have all the answers. I guess there’s probably nothing you can say or do that can make me better but your understanding goes such a long way and can have a huge impact. From the nurse practitioner who sat down with me and listened whilst I cried because it was so overwhelming, and I was in a lot of pain, to going and trying to talk to other professionals to make the situation better so I could get the right support I needed. I may not remember your name but I’ll never forget what you did for me. To the doctor and nurses in gynae triage who want to help me get on top of my pain and respect my wishes to be able to get back home. To them sitting down and asking “What does endometriosis mean for you?” and listen from the patient’s perspective and not just assume it’s “just a bad period.” It’s the staff who go who extra mile to make you feel cared for, especially when in a lot of pain and feeling low.

This is just a few examples of what can help. It’s OK to ask questions and take an interest. I’m sure most of us ladies know you do all you can to help in what is a difficult time. All you do is appreciated and we know you go above and beyond to help. We may not show it, but it really is.

Follow this journey on the author’s Twitter and Instagram.

Photo by Brooke Cagle on Unsplash

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