Endo & Me ~ Endometriosis Awareness March 2020

In coordination with Endometriosis Awareness month this March 2020 I am going to be telling my diagnosis story. I know I have talked about my Endo in many of my posts, but this is the real true and honest story of mine. I will also be sharing statistics, symptoms and other information, as well as giving links to the websites you might find useful to find more out about Endometriosis if you wish to.

Not only is this going to be emotional post, it is raw, and it could also be disturbing for others. I am choosing to share some pictures post surgery too. I will therefore by putting a Trigger Warning on this post, because I am showing pictures but also talking about things that may upset others.

Please don’t let this put you off reading it, I think people need to see what effect this horrible condition can have upon the body. The female body already endures so much, so to have to deal with this condition too, it is exhausting. I should know.

There was light at the end of the tunnel for me, so this post does end on a positive, but I do believe more people need to realise the repercussions of having this debilitating and incurable condition.

Please continue reading now as I tell my story of pain, loss and eventual diagnosis.

Endo and Me

I have a love hate relationship with my body. Sometimes I love that I have a fast metabolism, it keeps me slim and I’m generally quite fit and strong despite my thin frame and small bones… however the Endo side of me causes unimaginable pain at times. It’s a chronic and incurable illness that doesn’t just affect your period like so many ignorant and uneducated people might believe. It is so much more than that because a number of things that happen to you can have a real negative affect on your life as well as your body. Let’s start at the beginning for me. I first had issues with my body when I was around fifteen years of age. I began getting unusual pain that I had to take medication for. All you could get at that age was paracetamol and ibuprofen tablets which were 200mg a piece and trust me; they barely touched the sides of my pain. As I got older I began having more symptoms, I didn’t know back then they were to do with Endometriosis. Except that whenever I sat in front of a doctor they tried to tell me it was anything and everything but that, it was never even mentioned. When I was seventeen I lost weight suddenly and quickly, I was tested for Thyroid issues and even Cancer! All tests came back negative and I tried to just deal with my awful periods and pains. Doctors were reluctant to explore further, so I let it go. At 19 I was fed up with the ridiculously heavy flow I had every month and the fact that I had no regular cycle, it was so exhausting and an anxious time. So after some persuasion on my part, I went on to a contraceptive pill. Regulating my cycle was a bonus of the tablets, and for the first time in my life I could be social with confidence. By knowing when things would be occurring allowed me to be at home with my hot water bottle and tablets when I needed to be.

When I was 25 I came off all medication in the hope of starting a family. Little did I know that all the pill had done for years was masking other symptoms of my Endo. When I had been off it for just six months I had such pain that it began affecting my everyday life. I cancelled social time with friends and family, I ended up avoiding things that I usually enjoyed because I was worried about being unwell in front of people. This caused me to suffer with anxiety, and that never went away, it just got worse as years went by… and so did my pain.

When I failed to conceive for years I went to my doctor and had various tests, blood tests for Thyroid, Hormones and Vitamin Deficiency amongst them. Then when everything came back with no issues and my pains were so bad that they affected me daily, I began seeking more answers. Endometriosis or Polycystic Ovary Syndrome was just two conditions that female members of my blood line suffer with. I must have told this to over a dozen doctors over the years. There are correlations between female genes that are often ignored. It wasn’t until I finally conceived after three years of trying, and then I tragically miscarried, that I ended up in Accident and Emergency every four weeks when I got my period, and I began getting sussed on this…

When I lost my baby I blamed myself and it made me depressed. I was so unwell physically I just didn’t know to what extent just yet.

So to help my state of mind I kept a diary, what I ate, what I did daily, what my pains were and where, I kept track of my cycle down to the hour and tried to make sense of it all. I looked for answers online and anything that told me what it could possibly be. Going in and out of hospital with no answers was exhausting, and it was wasting so much time too.

One afternoon I had written out all of my symptoms and matched them to the condition Endometriosis. All I wanted was someone to take me seriously and try and attempt to diagnose me. Instead I was in hospital nine times over the course of eighteen months. I had one MRI, seven ultrasounds, I went on a drip three times due to dehydration, I was given antibiotics twice, I had examinations with five internal swabs checking for infections… Nothing came back with anything concrete. On an ultrasound they told me that I had had a cyst that had burst. That time I ended up almost passing out in the bathroom at home from the pains, I was vomiting and couldn’t keep anything down. A&E was the only option when I had so much blood loss and was so sick from pain that I became dehydrated and needed a drip.

When I was admitted during the period that came after I lost my first child it was clear that I was incredibly ill and needed help. I had doctors who wanted to take me to surgery to check my appendix and my bowel, but I kept telling them it was Gynaecological. After I had a complete meltdown and shouting because I was kept nil by mouth for three whole days while two doctors argued over what to do with me, a lovely doctor who was a cancer specialist offered to do a basic laparoscopy on me that evening, to simply look inside me and take some pictures, so I could be passed on to whichever department I needed to be. This was the turning point for me; it was the start of my actual diagnosis. Over thirteen years since my first unexplained pains had begun…

It was severe. I was diagnosed with Stage 4 Endometriosis, with a mass the size of a Tennis Ball attaching my Left Ovary, Bladder, Bowel and Womb to each other. My organs were all pulled off to the left side of my body, which was contributing to other symptoms that I was having, including bloating, bowel pain and problems, pain when I had a full bladder and pain during intercourse. The pictures that were taken inside my body showed extensive Endometriosis, like a mesh of tissue, thick cobwebs and various sized pockets of blood. At this time I had been ill for a long time, and I had lost weight, I was a size 6 and I didn’t feel like me anymore. The pain was all I knew some days. Having a diagnosis was like a light bulb had been turned on in my darkened room…

I was lucky because there was an Endo Gynaecologist Specialist at my local hospital. After speaking with him he agreed to operate, to try and save my left ovary. I wanted to be a mother so badly and he understood this. We also agreed to check for reasons why I couldn’t carry a baby thus far, four years of trying and a miscarriage was an indication things weren’t right. And he wanted to find out if it was all down to this Endo and the position of my organs. He would also do the dye test on my Fallopian tubes while I was under to see if they were clear of Endo too.

So I was popped onto his waiting list for surgery twelve weeks later. Every day was hard during that time, it was a blur of medication and hot water bottles and I had to give up work and go off sick after trying and failing to do my shifts and ending up just collapsing. After dealing with the chronic pains during that time, having hardly any sleep because I couldn’t get comfortable and my constant anxiety and nausea… I finally went in for my surgery…

The day afterwards I felt like a new woman, this man and his team had literally given me my life back. It was bad, but they had fixed me for now… I had had the Endo mass and tissue removed, then my organs gently coaxed back into place, my tubes flushed, my bowel that was damaged had a resection, and my left ovary was carefully saved. I could feel that constant pressure was gone; there was no more dull pain in that area. In fact recovering from the surgical incisions wasn’t anywhere near as bad as the pain I had lived with every day for years. I stopped taking pain medications three days after I got home from my surgery, because I felt like I could deal with the pains I was getting, which were less than ten per cent than what I was used to. How mad is that?

The worst thing about the surgery for me was the gas, it fills every part of your body as it absorbs and fills the spaces between your organs, it can be very painful until it’s gone. I had to drink so much peppermint tea to help with the bloating! Below is my abdomen after surgery, you can see I’m swollen and bruised and you can see the three incision sites.

Days After Surgery…

The worse thing about having Endo is that it has stolen friendships away from me, and it put strains on other relationships too. People don’t understand how you can look so “well” on the outside but feel incredibly ill on the inside. Pain is something your body gets used to but it is the fatigue that most people struggle to deal with. Sometimes I would visit family and I would be talking one minute and falling asleep the next. Even after my surgery, although I didn’t have the same pain levels as before, I was still keeping up with the feelings of being tired, and my periods were exactly the same.

Did you know that Endometriosis also causes a whole range of other issues? I had over half of these when I eventually got diagnosed. Most women get told they have painful periods and IBS. Most of us only have these things because we have Endo. Here is a great diagram that was shared on the social media Endo pages earlier this month outlining most of what women like me have to deal with, sometimes these are daily symptoms, some are infrequent but they still occur, often brought on by hormone changes and cycles.

I experience a great deal of these symptoms. Some are daily and some are infrequent.

Endo Warrior is a term I use often to describe myself, because some days it feels like a battle just to get through the day. I am extremely lucky because I got the time to recover from my surgery, both body and soul searching too. Then when I was ready I had to do IVF in order to have my son. He is my entire world and I would be lost without him. I look back at all that I’ve been through and I am proud that I never gave up, despite everything.

If you want something in life and you have to work harder to get it then it makes it all the more worthwhile. I overcame a needle phobia and dealt with my Endo pain during my IVF treatment. But I would do all of it again if I had to. Being a mother is one of the most incredible and rewarding things I have ever done.

I realise some women have too bad a diagnosis and never get the chance to be mothers because of this condition, and that makes me sad. I class myself as one of the lucky ones.

To anyone out there who is suffering, make your voice heard. I once said to a friend that “Living a life in pain is like letting pain decide your life for you” and I got to a point where I just couldn’t live like that anymore. If your pain is ruling your life, then perhaps it is time to do something about it. Find a Doctor willing to listen and willing to take you seriously. Keep a diary, show that to a specialist if you’re lucky enough to get referred quickly.

Endometriosis has cost me so much in my life already, and because there is no cure I deal with those uncertainties for my future every single day. I still class myself as one of the lucky ones, I still have all my organs at the moment, and I was able to carry and have my son. I love being a mum. I try not to let my pain get in the way of that. As my son gets older I will be able to explain why mummy cannot bend and play today, and I will come up with other things for us to do together on those, my bad days. But I know it won’t stop me from being the mother he deserves. Of that I will make sure.

Website Links To Endometriosis Information

Endometriosis UK
Endometriosis NHS

Thank you for visiting Severn Wishes today. If you would like to leave a comment please do so, I hope that my words help even just one person to stand up for themselves, to explain to a doctor that you want answers, that you deserve to live a life without pain. Stay strong.

✩ Sabrina ✩

My Personal Experience with Smear Tests #SmearForSmear and Living With Endometriosis The Facts

My Personal Experiences with having Smear Tests, in support of the #SmearForSmear Campaign.
And Living with Endometriosis, my Diagnosis and Treatment with Facts.

As a woman, I feel very strongly about the facts that have come to light in the UK news recently, and that is only 3 in 4 women of Smear Testing age are attending their tests! If you are in that percentage who have been putting it off, for whatever reason it might be, I need you to consider what I’m going to talk about today.

I am here to give you my opinions and to talk about a member of my family who is currently and bravely fighting Cervical Cancer after a diagnosis from a routine smear. Not only is she an inspiration to us as friends and family but she is raising awareness and keeping a diary of her treatment between receiving her chemotherapy sessions.

In this blog post I will be talking about my smear test experiences, and later on my diagnosis of Endometriosis and what it is like to live with. How this disease has some similar symptoms to Cervical Cancer and how having my routine smear helped me realise I needed to get more help with my issues when my tests came back normal.

I will be including some Smear and Cervical Cancer statistics throughout my post. But first I encourage you all to read my two accounts, and to consider booking or attending that test. Because do you know what? It might just save your life.

My First Smear Test

When I had my first smear test aged 25 I remember feeling rather anxious. The main reason for this anxiety was due to what pain it might cause me. I had always suffered with painful periods and other nasty issues, and I was undergoing a series of tests at the time of this first smear. My doctor was trying to determine why I was having so much pain in my abdomen. Despite this pain it was so important that I had this first routine smear to rule out anything like cervical or ovarian cancer. There are several conditions in women that share symptoms, and it is imperative that Doctors find out the root cause and distinguish what the problem might be.

The smear test itself was simple, after removing your clothes from the waist down you lay on the bed, place your feet flat together and bend your knees off to the sides. You place a sheet over your modesty and you await the nurse. My nurse was lovely and put me at ease. She was aware of my anxiety because I made it clear when I walked in – honesty is the best policy with nurses!

I first asked her to talk me through what she was doing so I could prepare myself. Trying to relax and not tense is the most difficult part. A speculum needs to be inserted into the vagina and then a light is shone on you so the nurse can see enough to take the sample. However I became rather tense and found the speculum made me very uncomfortable. The nurse could see I was distressed and she changed the size and tried again, this one was better but still hurt me.

The sample taking itself is like a quick scratch, and the nurse will let you know when they are about to do it. The cells are gathered on the implement and placed into a tube for testing. The speculum is then slowly removed and you are left alone for a moment to get dressed.

After the smear some people have 24 to 48 hours where they feel a little sore, and I did spot a little blood afterwards but nothing that a basic panty liner wouldn’t catch. Overall I was glad that I had gotten the experience over with. And less than two weeks later I received a letter in the post that told me my cells had come back as normal and I would be scheduled another routine smear in approximately three years time.

After seven trips in and out of hospital and several failed doctor tests, I found out almost two years after this smear that the reason the insertion of a speculum hurt me so much (and the reason for my other symptoms too) was because I was suffering with stage 3 Endometriosis. I was only 27. This had spread throughout my pelvis including on to my bladder and bowel and compromising my left ovary, it had grown to Stage 4 before I had surgery to remove it in 2016.

Endometriosis is an incurable condition where the cells and tissue that normally covers and grows inside the uterus grows outside of it. This often happens on the Ovaries, the Fallopian tubes, and other surrounding tissues. This can include the bowel, the bladder and other organs found inside the female pelvis. In much rarer cases it may also occur in other parts of the body such as the lungs and the brain. Once removed Endometriosis gradually grows back when hormones are present in the woman’s system, sometimes effecting the same areas as it had done before.

Endometriosis is not detectable on a Smear or a Scan, and is only diagnosed by exploratory Laparoscopy surgery. Endometriosis shares lots of Symptoms with other abdomen related problems, including some cancers. So having a routine smear test can tell you if you have any abnormal cells that need to be looked at in more detail. I cannot stress how important this test is, and if you are worried there is something wrong you must go to your doctor. I will include some more facts later in the post.

My Second Smear Test

My second smear was taken only eight weeks after I had had my Endometriosis surgery. The experience was much better the second time around, and I was less anxious of course because I knew what was going to happen. However I was still apprehensive that I would encounter the same pain as the first time. Although having the speculum inserted was still an uncomfortable process for me, the nurse managed to perform the test as quickly as possible, now knowing about my condition.

Once again the test results came in two weeks and I was very relieved to have a negative result and all my cells were fine. After having surgery only a few weeks prior to this smear, the result was something that I was a little more concerned about this time around. Lucky for me it was clear of anything sinister, and I knew I would just have the Endo to deal with. I was still coming to terms with my recent surgery, however I still kept my appointment for my smear because of how important it is.

After all that I went through, I know that I am truly one of the lucky ones, and for something that makes you uncomfortable for just a minute, it is more than worth it to perhaps save your life. One of the reasons I personally found the smear uncomfortable was purely down to having Endometriosis, and I will talk more about that in a moment.

Now For Some Facts

Cervical Cancer

• Cervical Cancer is the most common type of Cancer in Women under 35.
• 1 in 4 women do not attend their routine Smear Test.
• 75% of Cervical Cancers can be prevented through regular screening tests.
• Symptoms of Cervical Cancer Include; Pain During Sex, Lower Back Pain and Irregular Bleeding (During or After Sex and In between Periods). However sometimes there are no symptoms and some people are symptom less when they get diagnosed.
• 9 out of 10 People who have a Smear, have Normal Test Results back.
• A Smear Test takes minutes to complete, and early diagnosis of Abnormal Cells could Save Your Life.
• The UK age for Smear Tests is currently 25, but if you are worried about any symptoms you may be having then please talk to your Doctor.


Endometriosis

• There is currently no cure for Endometriosis.
• Symptoms of Endo include; Pain during Sex, Pain with the Bowel and Bladder, Bleeding between Periods, Constant Fatigue, Unexplained bouts of Extreme Pain, Unexplained Infertility, Painful and Heavy Periods and Lower Back Pain.
• 1 in 10 Women in the United Kingdom have Endometriosis.
• Infertility is a main concern for the women who have it.
• 80% of Endo sufferers frequently miss work due to the pain and other symptoms.
• It takes on Average 7.5 years to get a Diagnosis in the UK.
• 43% of women were wrongly told that the symptoms would go if they got Pregnant.
• Only 20% of the general public have heard about Endometriosis and most are women.
• Many young women are told they simply have a low pain threshold and that some symptoms are made worse by their own minds. 33% were told it was all in their head and just a case of “Bad Periods”.
• Endo is the 2nd most COMMON Gynecological Condition in the UK.
• The only Official Diagnosis is Laparoscopy and the only Treatment is Surgery.

Living with Endo

I heard a saying once that really stuck with me, it was this. “Pain is Inevitable but Suffering is Optional”. This really hit home for me, after I had struggled for almost fifteen years being told by doctor after doctor that I just had painful periods and a low pain threshold. It wasn’t until my husband and I had been trying to get pregnant for a considerable time that my GP began to run more tests. It still took two years for me to be believed by someone, and that was actually a cancer doctor at my local hospital. He listened to me and my list of symptoms, and said he would take me in for an exploratory laparoscopy before passing me on to the relevant department. It turned out that I was right all along, it was Endometriosis. The one reason I had concluded this was the fertility issues I had been having, the fact that other tests such as my smears had come back normal, and the other reason was because Endo already ran in my family.

I wouldn’t wish the Endo pain on my worst enemy. It is exhausting for day to day activities and causing fatigue, but on your period it’s 10 times worse. I have had to stay at home for days, vomiting because of severe pain and shaking from the shock it puts my body through. There have been times where I have been doubled over screaming, times where I have crawled to my bathroom, and times where I couldn’t even comprehend the pain that was happening. It has also caused me fertility issues and I have had to have surgery and treatment to get back to a normal daily life.
I cannot thank my specialist and surgeon enough for giving me my life back, they even managed to save my left ovary so that I could have fertility treatment. And although every day is hard, I am better knowing how to monitor my condition. There is no cure, and only surgery can remove it, so you have to learn what works for you. Hot Water Bottles and Strong Pain Killers have become staples in my house to get me through the rough days.

Having Endometriosis has meant I have cancelled social plans knowing my cycle would clash with it, I rearranged important events and even changed plans with very short notice to people. After a few times it became difficult for some people to understand, that you are not being awkward but you cannot be in a social environment when you are so ill. Endo has also caused me to suffer with anxiety. It all made me realise who true friends were and I am grateful to all of those who have stood by me through some rather difficult years.

Remember Endometriosis affects people in different ways, like any medical problem your body size and severity of the condition plays a part. I was actually told I must have a high pain threshold for withstanding what had been occurring inside my body, though at the times it was bad I thought I was the weakest person. Sometimes you have to believe in yourself and that the bad times will eventually pass. Thankfully for me I got help and it has gotten better.

Luckily I am now doing much better, but with an overall prognosis and time frame given to me by my specialist. I try and live every week to the fullest, although that is hard to do some weeks. But I have to say there is now light at the end of my tunnel and I am a stronger woman for the journey that I have had to overcome.

Endometriosis Awareness Month is March.

Thank you

Thanks for reading this blog post today, I know that it is a lot more open and honest than some of my previous ones, but I think that it’s so important that people support one another. I wanted to be honest about what I have gone through so it may help someone else.
I may do a more in depth Endometriosis post in the future if people would find my experiences useful. If you would like to read more about this and my ways of coping, please leave me a comment.
As women we need to support each other through the things that we go through. Talk to your best friend, your mum or a female nurse if you need some further advice on Smear Tests, but please, don’t put off having your Smear.
And when you think there is something not quite right, listen to your body and go to see your Doctor about it.

Thank you for reading Severn Wishes today,

 Sabrina 

x This post was written for Hayley, and everyone currently fighting Cervical Cancer x