Dear Medics,

Dear Medical Staff,

When I came to you years ago in so much pain. It wasn’t the type of pain that would get better after taking a 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 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, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me.

Hospital for me means that I’ve tried everything I can at home and I’m not managing and need your help to make things manageable again. Most 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 seen my insides you’d say different. I have Stage 4 Endometriosis, for me this means that 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 that I can do as 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 got so used to hiding and trying to carry on as normal when in pain. I may be that 21 year old that 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 it’s been from multiple surgeries, endless medications and to going through an artificial menopause and only being 20 at the time. It’s a lot for anyone to get there heads around especially the information that comes with the 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 that 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 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 it can 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 that 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 patients perspective and not just assume it’s “just a bad period.” It’s the staff who go that 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 that you do all that you can to help at 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. 

Twitter- @dionnemcfx

Instagram - @endowarrior_x

Full Council Meeting

I had the opportunity to attend the full council meeting at the City Chambers as a deputation. I’m passionate about raising awareness of endometriosis and I believe it’s something all women should be aware of alongside other menstrual conditions like PMDD etc which can also be a very debilitating illness. Councillor Mary Campbell put forward a motion which covered all aspects of menstrual conditions and how there needs to be more awareness, support and most importantly training for GP’s etc. 

The motion above passed unanimously at full council and was supported by Vice Convenor of Education, Alison Dickie who gave a brilliant speech in support of the motion. I had the council chamber talking about menstruation and it was a conversation that needed to be had -  it’s ok to talk period. 1 in 10 suffer from Endometriosis, 3 to 8% have PMDD and sadly an estimated 15% of women will commit suicide. This is a huge problem and we talk about the need for early intervention and preventing issues from getting so bad to the point it affects day to day life. I carried on for years not knowing that what I was experiencing was actually abnormal and later after years of dismissal finding out I have Stage 4 Endometriosis. I do wonder if I was made aware of it sooner could I have got help at an earlier stage in hope it would stop it getting so bad? There’s nothing I can do now as my Endometriosis is severe and if my uterus was a person, I would, without hesitation, murder it and, after hearing all the evidence, years of pain and suffering, not a jury in the world would convict me. I know that through raising awareness and educating others hopefully this can help to prevent any other women from going through years of dismissal and debilitating pain. 

We need to make teenage girls aware and the best way to do this is through schools. When I was at school I don’t remember covering much about periods all you were told is this is were you can access sanitary products if you need them. It’s not about scaring girls but making them aware so that they’re able to distinguish between normal and what isn’t. I have met girls over Instagram who are at that stage when they know something is wrong and are fighting for the right to be listened to. They are being dismissed and told “this is all in your head” “having a baby will solve the problem” or sent away and made to feel like they’re crazy. It gets to the point when you google your symptoms and just want an answer. I have been in that position before and know just how much of an effect it can have and it’s frustrating because it feels like your back to square one. If girls could have access to that information and be signposted to where they can get help and support that would make such a difference. Support is so important as these types of conditions can have a detrimental effect on mental health. It’s showing that in any situation it’s ok to talk about problems and it’s ok not to be ok. I’m lucky to have supportive people around me and a support group I go to and meet other ladies in similar situations which does help a lot. 

If anyone ever needs support it’s ok to reach out, you’re not alone in this. 

Breathing Space - 0800838587

Samaritans- 116 123

Endometriosis UK - Charity