Post Op

I’m now one week post op. I’m feeling not too bad it’s more the tiredness and wounds still feeling pretty tender. I must admit the two nights I was in hospital I was looked after very well. My Endometriosis had grown back in several places and my bowel was stuck to my uterus along with adhesions. 

 The staff in Ward 210 were fantastic always made sure I was as comfortable and pain free as possible. The one thing I thought was really good was each staff member that looked after me actually took the time to speak to me and find out more about endometriosis and what it’s like to live with the condition. They were great when it came to the night before my op I was nervous and one of the healthcare assistants on nightshift made me a cup of tea and sat and let me offload which helped a lot. I got to know the staff quite well and what was even better the same staff were on shift post op so they knew me and I had the continuity of care . Even though the staff were busy they always took the time to come and check on you regularly and made sure that you were okay and not too sore. I felt a bit like a pin cushion at one point as over the two days I was admitted I had to get quite a few blood tests done but I knew that they needed to keep an eye on things before allowing me home. The staff went above and beyond and are an absolute credit to the NHS.

The thing I want to push is that “We know our own bodies and when something doesn’t feel right keep pushing until someone listens.” It’s been one hell of a year as I’ve had to fight to be listened to. I knew my Endometriosis had grown back but I was told it couldn’t have and it was “phantom pains” and I had one consultant who was just going to discharge me. You know yourself things are bad when there’s times you’re having to take morphine just to get on top of the pain and have to be sent to A&E.  I fought and got a second opinion and thankfully this consultant agreed to do an MRI and plan for surgery. The truth is regardless of how many surgeries you have the Endometriosis just grows back and for some it can be within weeks or months.To any individual out there struggling with bad periods or pelvic pain please do see your GP and ask for things to be investigated further. I’m hearing more and more stories of people being dismissed and it’s wrong.  EARLY INTERVENTION IS IMPORTANT.

We deserve better.

This week I’ve realised just how much things need to change as there just seems to be no clear pathway for women with Endometriosis when attending A&E. I’ve not been doing great these last few weeks and my GP made the decision to send me up to A&E after assessing me and deciding I needed to be seen. I felt the student nurse was the only one who really listened and seemed interested. I have a feeling it’s because the label 🏷“chronic pain” is in my notes this is used for almost everything. The doctor made the decision that since I’m having surgery in August they could review me then and insisted I’d be better at home with painkillers which I was already doing in the first place but this was doing very little. I have a feeling that this is endo causing problems I suspect something is stuck and that is what is causing all the left sided pain. The one thing I wanted was to be helped and my concerns listened to. 

Just because the obs and bloods are ok it is assumed that you are “fine” when deep down you just feel totally shit. I left feeling even more deflated than I went in. A&E for myself and a lot of other people is a last resort it means everything we’ve tried at home just hasn’t worked. 

 There just doesn’t seem to be anywhere to go when your really struggling with your endometriosis. It feels at times that you are just left to “get on with it.” It feels like you just hit a brick wall because you reach a point you don’t know what else to do and the doctors don’t know either because of lack of knowledge and understanding around the condition. If only they could see endometriosis they would see how hard it is living with such a painful condition and how debilitating it can be. Imagine not being able to do basic things or  function properly. You feel useless because your no good to anyone when your in pain. If it was visible attitudes would change. 

What us individuals with Endometriosis need is a clear and consistent pathway that means that when we attend A&E about anything gynaecological related from the minute we are triaged to then being seen by someone that is experienced to some extent in gynaecology  who will then be able to come up with a clear plan. I feel like we go from pillar to post most of the time. Let’s not forget the staff who go above and beyond when your either admitted through MAU or A&E they take the time to listen and in that moment it feels like someone is on your side and actually wants to understand and do something to help make the situation your in a bit less rubbish than it is. At times it feels like your fighting a never ending battle that’s filled with uncertainty. 

Sometimes you’ve got to really fight to get the right care and treatment you need. I’ve had to do that a lot and sometimes you have to be your own advocate in this. If there’s one thing that endometriosis has taught me it’s that I know my own body better than anyone else. I had a situation a year ago when a so called endo specialist told me my pains were “phantom pains” when I told him I was worried that the endo had grown back. I knew something was wrong because it was having a huge impact on my day to day life but still he wouldn’t listen. I had to persist and eventually got a second opinion and turns out I was right to be worried. If only I was listened to a year earlier maybe things would be different today and it wouldn’t have gotten this bad. I’m not the only person out there who’s been dismissed like this I know there are loads more people out there being told similar things. Instead I’ve decided to raise awareness and let people know that they know there own bodies better than anyone else and if they’re worried about something speak out until someone listens. 

The reality of Endometriosis

I’ve been feeling pretty deflated if I’m honest. The last year or so has been a struggle from being dismissed and told by a supposed to be endo specialist my pains were “phantom pains” even though I knew the Endometriosis had grown back and this was confirmed by MRI scan in January this year. I’ve had to constantly fight to get the care and treatment that I have desperately needed. I was listed for surgery in January and just got a date through for August but before then I was told “ We aren’t meeting the waiting time guarantee so it’ll probably be ____”  which is devastating. This hasn’t just happened to me but a lot of other individuals out there. This is a severe breach of the waiting times and this shouldn’t be allowed to keep happening even though sadly it will. Someone needs to stand up and acknowledge that there are severe gaps and individuals are falling through the net. 

There are NICE Guidelines which are set out that individuals with suspected or confirmed endometriosis can be referred to a specialist centre. You instantly think “great I might actually be getting somewhere and get good care” but the reality is these services are underfunded, have limited resources and simply cannot cope. This is when the GP comes in and has to be the one to pick up the pieces. Some people unfortunately don’t have the support from their GP but I’m incredibly grateful to mine she has went above and beyond and does everything she possibly can to help. I’ve felt like I have had more support from her even though sadly the support from the hospital hasn’t been there.

There is talk of “early intervention” and having faster diagnosis times but there are women out there that by the time they are seen by gynaecology have a laparoscopy the Endometriosis is severe and in some cases require other input from specialties such as urology due to bladder or colorectal because of bowel involvement. In Edinburgh it’s estimated that 400 to 500 individuals will require complex interventions/treatments. The wait for these specialties and treatments are lengthy which means having to “struggle on.” 

It’s a really horrible position to be in. I understand that there’s cuts throughout our NHS but what is frustrating is not having support there when you need it. Endometriosis is hell. It is one of the most painful conditions and I wouldn’t wish it on my worst enemy. It’s not just a bad period. Endometriosis comes with different problems it’s endless medications, appointments and hospital visits. For some it means being unable to hold down a full time job or not being able to work at all, dealing with the side effects of medications, struggling with the fatigue that endometriosis brings with it. Also some are losing internal organs or their fertility. There are too many suffering to the point that it affects mental health and some ladies have sadly died due to suicide because it’s all just got too much. This shouldn’t be happening and more needs to be done to help support individuals with Endometriosis. 

Change needs to happen.

Throughout March we raised as much awareness as possible of Endometriosis. We educated others and hoped that it would create better understanding of what life is like when living with a chronic condition. It gave us a voice which we used and talked about what needs to change. As I sit here and write this I have mixed emotions. Since January this year there have been more than 100 deaths to suicide within the Endometriosis community. There have sadly been 2 within the last 48 hours. It speaks volumes about the pain that sufferers endure. We all know how helpless endometriosis can make us feel and how isolating it can be. I guess it puts things into perspective and with helping run a support group I put a message out highlighting to other ladies that “it’s ok not to be ok” and that “it’s ok to reach out for support” and they can do so by a message either on the group page or privately to one of the admins. It’s about letting others know that they aren’t alone through this. Early intervention is so important. 

There is still a lack of understanding amongst doctors. I’ve spoken to a few ladies who are in the process of being diagnosed and are being told there pain is either “constipation” or “just bad period pain.” There is a Menstrual Wellbeing toolkit on the RCGP website that can be accessed by clinicians but looking at going forward how do we encourage doctors to use this toolkit in order to ensure quick diagnosis and treatment? Is it more about highlighting that this toolkit exists and building menstrual conditions into CPD within the workplace? I’m incredibly lucky to have a good GP who understands endo and has put supports in place for when I need them i.e. if I run out of painkillers, need to be seen or be sent up to the hospital.  Unfortunately other ladies don’t have that and having good quality care and support is key when living with a chronic condition.

Last week we had the Worldwide Endometriosis March in Glasgow. This was well attended and attracted attention from the public. We gave out leaflets with information on the condition which included details of support groups that run across Scotland. There was various banners and signs created which highlighted how us sufferers feel in regards to the condition. It was also important to highlight that Endometriosis doesn’t discriminate and that everyone should have access to the right care and support regardless of gender when suffering from this condition. 

Endometriosis Awareness Month may be over but that doesn’t mean we won’t stop raising awareness and educating others. I just want to give a shout out to those who are campaigning to improve care and treatment especially Monica Lennon, thank you for all that you do. Also Edinburgh Council for acknowledging that this is an important issue and awareness is needed. We won’t stop fighting for change💪🏻

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

Saying Bye to 2018: A letter to Endometriosis

Dear Endometriosis,

What a year it has been, 2018 is finally in the past and my god you haven’t half tested me this year. There have been times when you’ve broken me and I’ve not had much fight left in me. I knew I couldn’t let you win, you are one bastard of an illness. You’re always there and are always cause some sort of problems. It’s having to adapt in order to not only manage but function. It’s watching what your eating and drinking and recognising triggers for a flare up, planning outfits in order to hide the horrid bloating and living in leggings and loose fitted clothing, making sure your well equipped with medications and heat pads so you can use them the minute the pain starts. You have taught me to appreciate the good days and hold onto them tightly💛 The days when you are able to say “you know what I can do this” and feel that spark of positivity.

There have been days when I just can’t manage the pain at home and have had to be sent up to the hospital by my GP. Admitting defeat is hard but when in so much pain you find you’ll do anything for that bit of relief. I’m grateful to the hospital staff who do everything they can to make your admission as quick as possible. The nurses who are so understanding and make sure your written up for IVs or IM injections as soon as possible and want to do everything they can to help. I’ll always be grateful to the nurse who sat with me while I cried because everything had just got so overwhelming she listened and made me feel that it was okay not to be okay. I may not remember her name but I’ll never forget what she did for me. It’s those that help you through such a low time and do everything they can to help you, those that don’t give up on you the minute things get hard.

2019 may mean further surgery but it’s a step closer to getting my life back. Endometriosis took away my life and it won’t give it back. It’s the uncertainty of not knowing what’s ahead all you know is that you have stage 4 endometriosis and that it’s severe. 2018 saw me faced with the reality of being put through an artificial menopause. Being 20 years old and suffering from menopausal symptoms was hard. You couldn’t just turn around to a friend and say “ I’m going through the menopause I’m having a hot flush,” or the prospect of how do you explain to your boss that you are going through a shit time and dealing with menopause. You hear other people say how bad it is and how they dread it and you just sit there nobody else knowing that you in fact are going through it. It was the hardest thing but I managed to bare it and got through it. The times I felt that I couldn’t get through this and I did, I survived the times I didn’t think I could do it. I had days I wanted to scream and cry and I allowed myself to do so then picked myself up again and carried on. 

Endometriosis brings uncertainty with it. The not knowing if treatments will be successful in managing the condition for you to have somewhat a normal life and be able to function. The not knowing if you can have children of your own and fall pregnant naturally. The uncertainty of not knowing what the future holds and what’s ahead. 

Today I say goodbye to 2018 you are in my past now. 2019 I’m ready for you and I’m ready to fight this bastard of an illness.

X