Living with Endometriosis - The Heartwarming Journey of an Endo Patient.

I suppose I should introduce myself for starters; I am Laura, 34, single mum to my amazing 9 year old daughter, Lois. I work in the Safeguarding and Pastoral team at a school in North Manchester. 
Talk surrounding periods and sanitary products have never been 'taboo' at home. My mum  explained what tampons and sanitary towels were when we went shopping even before I started my period. She also briefly mentioned the words 'period' and 'menstruation' but I had never really grasped what that was, especially since my Mum had said that she didn't have the need for these products until she was 16/17. At 8, I figured this information being shared with me was irrelevant.
Boy, how wrong was I !
I have had a rollercoaster relationship with my body ever since I was 8. I remember the day so vividly, I was sleeping at my Grandparents house as it was the school holidays. I remember having a stomach ache and decided to go to the toilet, there I discovered I was bleeding. At 8, I thought I was dying! It was then I started my periods, they lasted for 7/10 days per month but they weren't especially painful, the odd cramp but nothing that I felt was extreme pain. This continued for the next year or so, discreetly using the 'teacher toilet' at school so none of my peers would know, I felt so embarrassed, I wouldn't go on sleepovers when I was 'on' and didn't tell any of my peers, even when periods were touched upon in year 6, I kept it to myself. 
 
Image for reference purposes only. Source: Times of India
Once I started high school I began to have two periods per month each lasting 7-10 day, extremely heavy. At 12 or 13 years of age, the GP decided I was having two periods a month as I was sporty but 'still young' and my body was having trouble deciding on a cycle and so put me on the pill. This regulated my period but the pain was slowly increasing along with the heaviness. By college I would be in agony during my periods, I would have pain down my legs, back, abdomen and would feel lethargic almost always - this is when the trouble with my bowels began and I could go for a week, sometimes more without relieving my bowels - they were becoming painful too. I would sometimes collapse from the pain, I was sent to see a neurologist due to this collapsing episodes - the neurologist concluded there was nothing wrong with my brain! 
 Image for reference purposes only. 
Sexual relationships with my boyfriends were extremely painful - and the pain could last for days afterwards. My parents had been pushing for me to see a gynaecologist since 2004 I would not go. Like many 19 year olds I was conscious of my body and did not want anyone looking 'down there' if they didn't need to - I was scared, I was embarrassed. By 2009 I gave in, my parents booked for me to see a Gynecologist that my Mum had previously seen, this had to be done privately as my GP did not think I needed to be referred at that point. I saw the Gyne, he listened to all the symptoms - 

Excruciating pain down legs
Constant pain in lower back
Abdominal pain
Vaginal pain
Bowel pain
Bladder pain
Constant fatigue
Constant bloating
Painful intercourse
Extremely heavy and long periods. 
He looked at me and said that he believed it could be a condition called Endometriosis - but he would need to perform a laparoscopy to confirm this. I agreed and waited for my operation date. Whilst waiting I looked up endometriosis and what it was, I had never heard of it. That was when I saw the word 'INFERTILITY' and my heart sunk.
I had always been an extremely maternal person and the thought of not being able to carry my own child made me so sad. I tried to push that to the back of my mind, I had only recently been in a new relationship for 7 months or so, I was worrying about the implications that could have on my relationship at the time. Once my operation date arrived, I went to the hospital, had the procedure and waited for my consultant to come and tell me his findings that afternoon.
When he entered the room, my boyfriend at the time and my mum were both there. The consultant came over and explained that he had concluded I had endometriosis and he had also performed a smear. I remember completely panicking and not knowing how to process the information. I asked the consultant what that meant for me in terms of fertility - the consultant explained that where the endometriosis was currently meant that I could have some hormone treatment but I would have a window of approx 12 months to get pregnant - 9 of which I would need to have a hormone treatment. I was devastated. My partner at the time, my now ex husband, and I decided that we should try.

After the surgery I received a call from my consultant asking to see me. I went to his consultation rooms - expecting a crash course in endo. What I received was the news I had  early stage cervical cancer - I was shocked but surprisingly OK, I was more worried about the Endo! This was treated and I then began regular 6 monthly colposcopies. Had my consultant not done the smear in 2009 I wouldn't be here today. He performed the smear pre 'usual smear age'.
Throughout the treatment process I was keeping home pregnancy tests in business, taking tests daily - so much so that it became an obsession. 10 months later, there were 2 blue lines. I had never felt so happy in all my life. I couldn't believe it, I must've taken a further 10 tests that day to make sure! My pregnancy was fairly straight forward - lots of nausea, a few bleeds but I enjoyed every.single.minute. 

Image for reference purposes only. Source: Personal Excellence
Then came the birth! I ended up having an emergency section, as they opened me up the surgeon was saying he could not get the baby out as my organs were not where they were meant to be, Lois was stuck and there were endometriosis adhesions 'everywhere'. I was then put under anaesthetic. Lois was born safely, I was not out of the woods yet. I had a 6 hour operation after this so did not meet Lois until 6.5 hours after, I had lost a lot of blood, my endometriosis had almost killed my beautiful Lois and me.

Image for reference purposes only. Source: BBC
I was then advised to have the marina coil to help. This did help, but I still had periods whilst I had the coil. I decided to remove the coil as we tried for another child. I again had hormones, and fell pregnant twice but sadly miscarried both babies. 

My periods and pain rapidly got worse and I was told my cervical cancer had come back - I was booked in to have a hysterectomy in August 2015. This went ahead, but typical to endometriosis sufferers, each surgery you have has more complications and more risks due to the nature of the disease. What was supposed to be a total hysterectomy became a subtotal hysterectomy as the surgeon had to leave both ovaries and my cervix due to excessive blood loss in the 6.5 hour operation. 
After my hysterectomy I began to have lighter bleeds - 3 days on average. I did not understand how this was possible, I arranged to see my consultant who explained that this can sometimes happen if the uterus is removed higher than where the endometrial layer grows.  I was then put on hormones to help this, it did not stop the bleeding or pain. 

I suffer from all the symptoms stated previously aside from the heavy and long periods now. I have a huge cyst on my left ovary (not cancerous - I received the good news yesterday!!) that causes a lot of pain, anything over 5 cms surgeons usually remove. My current consultant needs to have a bowel specialist and bladder specialist in the surgery due to my endometriosis and the fact that all of these organs are stuck together, and another operation is more risk.
A lot of people believe that having a baby/a hysterectomy 'cures' endometriosis. It doesn't, there is no cure! If women don't have symptoms after these things, that's amazing but unfortunately that's not the case for the majority of women. I am living proof of this, to look at me I look absolutely fine, every day is a struggle with pain and fatigue, some days more than others but every day, for me, the pain in my back is constant and the pain in my abdomen begins after 3 pm - like clockwork - no matter what I eat or don't eat, it's my 'normal', the day that I say something about it to my friends/boyfriend is the day that it's too much that day. 
Endo then has an huge impact on another aspect of my life - I give my everything to my daughter and my job - by 5pm I am absolutely shattered, exercise is something I enjoy but struggled to do depending on pain or actual fatigue, so sometimes I get down about my body image and frustrated with my body that it won't just let me do what I need and want to do! 

My 9 Year old daughter knows about periods and sanitary products, she knows what to do should she start her periods. I felt that this was something she should know at an appropriate level - she could start her periods anytime, anywhere, she's confident she knows what to do and knows it's a completely normal bodily process. She knows it's nothing to worry about, nothing to be embarrassed about, she knows words like menstruation, period, vagina are all words that are not dirty they are appropriate and factual. She knows she can be completely open with me. Once she starts her periods I will be explaining that if she doesn't feel like her periods are 'natural' or something isn't quite right she knows her body better than anyone, to tell me and we can try and get some help, that it's OK to talk about it. 

Women's bodies are amazing things. 

Warmest Regards,
Laura.
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