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Meet Lisa

We are taught from such a young age that if we are hurt or if we get ill, we go and see a doctor or we go to the hospital, and they make us better. However in reality this isn’t always the case and we’re not prepared for that, I certainly wasn’t. If I knew back then what I know now oh how things could have been so different.

My Story

I remember the day my period started, I was in secondary school, I went to the nurse and was given a sanitary towel and that was it I was sent on my way. I also remember feeling this huge weight on my shoulders but not why. It kind of feels like back then my intuition knew what was to come but as a 14-year-old girl who never heard of conditions like endometriosis or adenomyosis I had absolutely no idea. I mean these things were never talked about anywhere. Because they were never talked about, and you were told this is all part of growing up you just accepted that and thought this is what everyone else was experiencing.

I spent years back and forth to the doctor and to specialists. I remember being sent to the hospital before for suspected appendicitis, but it wasn’t, I remember clear as day them saying it must be something gynaecological, this was before I even knew endometriosis existed.

The first time I read about endometriosis I was sat in my doctors waiting to be seen and I saw an article in a magazine. As I read through the symptoms it was like I was ticking off a checklist and I had almost every symptom. I remember speaking to an emergency doctor in my appointment which I was already there for. She did not dismiss me she said it was very possible that I could have endometriosis and to make an appointment with my doctor which I did.

I was sent for ultrasounds, and nothing ever showed on them, I am now 34 so this was a long time ago, I was in my early 20’s. Things got very bad and I was sent to see a gynaecologist who done an examination and could feel thickening on the inside of my uterus. I was put on the list for surgery.

On the day of my surgery I remember feeling so nervous, this wasn’t my first surgery in my lifetime, but something just hit me. In the little room before theatre the nurse held my hand and the next thing I knew I as in recovery. I was told the following day before leaving hospital that nothing was wrong, everything was normal and in fact I could keep the human race alive with my womb as it was so healthy. I was discharged and sent on my way. I wasn’t referred anywhere else, that was it.

Years went by and things just continued to get worse, I tried multiple hormone tablets, pills, the contraceptive injection, and my body just didn’t seem to get on with any of them, the pill actually made my periods worse. My doctor then referred me back to a different hospital, again I went to the appointment and was advised I had every symptom of endometriosis, and I would be put on the list for surgery. The day came for surgery I went in and woke up in recovery. I was told again the following day after surgery nothing was wrong everything was normal, but I was being referred to the pelvic pain clinic.

When I got to the pelvic pain clinic and went through my symptoms and history, endometriosis was mentioned and adenomyosis, I had up until this point never heard of adenomyosis. I was also offered Zoladex (medical menopause) which I did try. I was on this for somewhere between 2-3 years. It took around a year for my periods to stop on Zoladex. I then saw another specialist in the pelvic pain clinic who brought up my pictures from my second surgery and she pointed out signs of deep infiltrating endometriosis and adenomyosis. I was told I have a very angry womb. It was a very surreal moment, and I was so grateful I had someone in the appointment with me because even some days now I still have to ask what the specialist showed me. I think from years of not being believed and told nothing was wrong there is always this little voice in my head saying the opposite.

 

I was booked in for my first MRI. My results came back that things were stuck together, nodules on both uterosacral ligaments, endometriosis and adenomyosis, at this point I was on Zoladex and was continuing with that treatment so things were left at that.

 

I came off of Zoladex near the end of 2019 as my periods were returning, I think because of the HRT and with the menopausal side effects it was too much to handle at once and my body felt like it needed a break from the medications. Things continued to spiral, and I was sent for another MRI. This time it showed slight progression of fibrotic endometriosis and significant progression of adenomyosis, fibrosis on both ovaries, things stuck together and so on. I was then referred to surgery. Again it was there in black and white and all I could think was how could this have been missed so many times.

 

The surgeon looked at my previous surgery notes from before and endometriosis was mentioned but I was never told this. I had my third surgery relating to endometriosis whilst in the pandemic and I had to go into the hospital alone. The nurses and staff in general were so attentive and they knew the position everyone was in. I was first on the list. I was in recovery for a quite a while. The surgeon advised that no endometriosis was seen in surgery so none removed, when I later spoke to my specialist, she advised in this surgery they would have looked for superficial endometriosis. I did have adhesions removed from my left and right pelvic wall, I was also told after surgery before leaving that there was a lot of fibrosis and again a very angry womb. They didn’t touch the fibrosis in case they made anything worse. I was sent back to the pelvic pain team to try and manage my symptoms and pain as I was told I would have to live with them.

Over time my symptoms have got progressively worse. I have extremely painful periods and my longest period was 3 months long. I would have heavy bleeding to the point of becoming iron deficient and anaemia. I had an iron infusion in 2021. I have had times over the years especially my younger years that I’ve passed out. I recently passed out in the middle of a road. I once counted sanitary towels and over the time span of 10 days I had used around 90 pads. When I was younger, I would get extremely constipated during my period however now it’s all the time so I have to take laxatives daily. And the pain when I do go is so horrific, I feel like I’m going to pass out and I have cold sweats. I get sharp pains shooting up my rectum and vagina. If I was to write all of my symptoms and how they affect me, it wouldn’t leave room for me to write about anything else.

 

Endometriosis has completely changed my life. I never thought that I would be where I am now at this point in my life. I have had to reduce my hours at work because my body just can’t cope. I don’t attend many social activities at all. When you are in so much pain and you are dealing with so many symptoms the energy you have goes on the smallest tasks of everyday life, getting out of bed, brushing your teeth and so on. As for my mental health, this has taken a massive toll. When I was younger, I did not cope well at all and even now I have times when I simply don’t know how I’m going to put one foot in front of the other. There are times where my eyes will randomly start welling up with tears when I’m just sitting or I’m walking around in a shop. I am extremely lucky for the support system I have around me because they have been there through some of the darkest points in my life and I love them all so much.

 

Trauma, medical trauma is so imbedded in our lives. In this cycle of being told nothing is wrong you start to question yourself and because this is coming from medical professionals and because of that so do the people around you. To then find out you were right all along, no matter how much relief you have from finally being believed those years leading up to that stay with you and shape you.

 

As awful and destructive as this disease is I have met some incredible people throughout my journey. And if it wasn’t for The Endometriosis Foundation I don’t know where I would be now. There is so much information that wasn’t made available to me, that I now know. We can only learn so much ourselves and then there are things that we wouldn’t know about if we weren’t given the information and tools to find them. And that is what is so incredible about this charity, the willingness to help others and help to change their lives for the better. I truly believe we are put on this earth to make a difference and I feel like I’ve finally found where I fit into this life with endometriosis.

 

This year will be 20 years, 20 years since all this started and that is more than half of my life. Even though I don’t know what’s going to happen next, I know I have the right people in my corner to help me make informative decisions. I have been advised about a hysterectomy more times that I can count, however I know this is not a cure for endometriosis and also being single with no children, I would love to try for my own one day. I have been asked why I’m not in a position to have children and also previously been steered away from egg freezing. I don’t know what my fertility holds and for me personally I can’t make a decision not knowing.

 

However I have been referred to a different hospital at my request to see if there is anything else that can be done and that’s ok. I think there is this fear that we can’t go somewhere else, but we can and it’s healthy to. You can go to as many people as you need to get the help you need, the help that is best for you. And anyone with your best interests at heart will understand even medical professionals because we are all trying to navigate this disease and do what is best for us and in reality, we know our bodies better than anyone else, we are the ones that live in this pain day in and day out.

 

There is no cure. There is so much to learn no matter where we are in our journey and to be able to help others not have to experience what we have would be such an amazing thing.