A STORY TO BE TOLD BY A TRUE WARRIOR
On 30th June 2014, I had my first diagnostic laparoscopy, and the surgeons found that I had endometriosis. These 4 years have been such a whirlwind, with my health continuing to deteriorate, especially over the past 2 years.
But I guess I should probably start at the beginning.
Looking back now, I am pretty sure that my symptoms started when my periods started when I was 11. I remember having absolutely agonizing period cramps, to the point I was crying, and begging my Mum to let me stay home from school. Although I just assumed this was normal, and I am pretty sure that my Mum thought I was being a drama queen. As well as the pain, my periods were always very heavy, and I suffered from awful back pain with my periods as well.
At the age of 12, I bled constantly for around 5 weeks. This is obviously a lot of any woman to deal with, let alone a 12 year old girl, who doesn’t really understand what is going on. With the help from our GP, we decided that it would be best for me to go on the combined pill to try to tackle the pain, and the heavy prolonged bleeding. It took a while to find a pill that suited me, and helped to control the symptoms that I was getting.
Thankfully we found a pill that helped, and after a few months, the pain, and the heaviness and length of periods began to regulate, and the symptoms all calmed down.
In terms of these symptoms, things calmed down until I was about 15/16, and this is when the pelvic pain started to rear its ugly head again. But this time, it was worse than it had been before. It was safe to say that I was very frightened by this pain, as I had no idea what was causing it, and I was still taking the combined pill.
I remember this one time, I was at A&E with my Mum, and we were waiting for hours and hours, while I was in absolutely agony. The doctors didn’t want to listen, and they didn’t take me seriously. The doctor that we saw just dismissed me, and I remember that he said to me, ‘Well at least your M.E isn’t so severe that you aren’t able to leave the house‘. Even though I hadn’t even gone to the hospital about my M.E, I had gone for a completely different reason.
After a year or so, of the pain returning, and continuing to flare up around the time of my periods, despite being on the pill still. My Mum started to look into information about endometriosis on the internet, and the symptoms of endometriosis were so similar to the symptoms that I had been experiencing. After Mum had found this information, Mum and I were back and forth to the doctors more times than I can remember. The doctors tried me on various different combined pills, but they didn’t work, and they didn’t provide me with any relief of any kind.
Eventually, when they were obviously fed up of me being there so much, they reluctantly referred me to see a gynaecologist. Unfortunately, the gynaecologist that I saw wasn’t helpful at all. They dismissed me and my symptoms, I think because I was so young, they didn’t take my symptoms seriously, and they just didn’t want to listen to me. I felt so deflated, and I was back to square one.
By now, I was so fed up, and so desperate for help and some answers, I started to do some research on endometriosis, and I spoke to some people that I knew who had endometriosis. With those people, I discussed the next steps that I would need to take in order to get a diagnosis.
One of the GPs that I saw said that she was pretty sure I had endometriosis, but she didn’t want to send me for a laparoscopy to officially diagnose it, because at the age of 17, I was apparently too young. In my opinion, that was absolutely ridiculous, and so I decided that I wasn’t going to give up that easily. I went back to the doctors many of times, and finally saw a doctor who decided that they were going to refer me to have a laparoscopy to investigate what was going on inside my pelvis.
And finally, at the age of 18, on June 30th 2014, I had my first laparoscopic surgery, and during this surgery, they found small, superficial amounts of endometriosis. Although they didn’t remove it. It was such a relief to finally, after all this time, have some answers to why I had been in so much pain, but I was really confused as to why they had left it there, considering I had been suffering so much because of it.
After my surgery, I was seen several months later by a gynaecologist, although I was only seen by her once. She told me that because there hadn’t been much endometriosis, that it shouldn’t impact my life, and that I needed to just live with it. She told me to just handle my symptoms with the pill, and that should control the symptoms. Even though I had been on the pill for all this time, and was still getting symptoms.
I had thought that after getting some answers, I would finally get some help, but nope. After this appointment, she discharged me, and left me feeling so down and deflated.
So, I continued to battle it alone, with the help of my wonderful Mum, of course. I carried on using the combined birth control pill, but when the pain started to get worse, the GP suggested that I try the depo-provera injection (the contraceptive injection). With this advice, I gave it a go, although unfortunately, it didn’t help me at all, and it made me feel horrible. So I decided not to continue with this hormonal treatment.
In December 2015, after lots of disheartening, and disappointing gynaecology appointments, which always resulted in very little help and compassion from the doctors that I had seen, we decided that it was time to go and see a gynaecologist privately. Unfortunately, the gynaecologist that I saw privately wasn’t overly helpful in terms of helping me with the endometriosis. Although he did an internal ultrasound, and during this, he found that I had polycystic ovarian syndrome. It was a huge relief to get an answer, which explained some of my symptoms. Over the years, I had had many ultrasounds, in fact I had only had an ultrasound a few weeks prior to this appointment. Yet I had been told that it was completely normal. I was so thankful that this doctor that I had seen privately could diagnose this condition, and give me a little bit of relief in terms of finally having some more answers.
Now fast forward to May 8th of 2017 when I finally had my second laparoscopic surgery, where they performed endometriosis excision, adhesiolysis, and left ureterolysis. The surgeon had found a considerable amount of endometriosis, and adhesions over my pelvis, bladder and ovaries (and I am pretty sure in a couple of other places).
When I came round from the anesthetic, I remember that the pain was so bad, although I remember feeling a sense of relief, because it was a different kind of pain than I normally felt with the endometriosis. This wasn’t endometriosis pain, this was surgical pain. I had to have a catheter in, because the surgeon had removed endometriosis from across the front of my bladder; I had to be kept on oxygen, because my oxygen was low due to the pain, and as a side effect from the anesthetic and drugs that they had used during surgery. I had to stay in the hospital overnight, which was, in all honesty, absolutely terrifying, as I had never stayed in the hospital overnight on my own before. The last time I had stayed in the hospital over night, was when I was a little girl, and my Mum had been able to stay with me.
After my surgery, I had a couple of weeks which were free of endometriosis pain, the only pain that I had been experiencing was surgical pain, and I was over the moon. I really thought that things were beginning to improve for me, and that I would start to get my life back on track, and a better quality of life. I was finally getting a break from this awful pain, caused by this terrible disease.
But, sadly, after only 2 weeks, the pain from the endometriosis returned, and it was worse than ever. I still had the surgical pain at this point as well. I cannot even begin to put into words just how devastating, and soul crushing, this was. I still cannot believe that this major surgery hadn’t helped me.
The recovery from surgery was far from easy, in fact it was extremely tough. My poor Mum had to take me to the GP several times, to the out of hours GP, A&E, and to the emergency gynaecology clinic. We went to so many doctors because we thought something was seriously wrong, since the endometriosis couldn’t be causing this pain and the symptoms, because I had the endometriosis excised, only 2 weeks ago! Although we were wrong, the doctor that I had seen in A&E (and her superior), and the doctors at the emergency gynaecology clinic all said that they thought the endometriosis was already growing back. We were shocked, as we didn’t think that it was possible for endometriosis to return that quickly.
When I saw my gynaecologist again before the end of 2017, she was very disappointed that the surgery hadn’t helped, as we had hoped. She also said that I have chronic pelvic pain syndrome, and she also thinks that I have adenomyosis, due to the symptoms I have been experiencing. I was also told that progesterone doesn’t help my endometriosis or my symptoms, in fact it makes them worse, which means that we need to avoid treatments with progesterone in, and that whenever I get pregnant, because of this, my pregnancy will more than likely be very miserable, and painful. For someone who is absolutely desperate to be a Mum, this was so hard to hear, although I know that whenever I get pregnant, any suffering will be 100% worth it.
This year has been even harder in terms of the endometriosis.
In March 2018, I saw a colorectal surgeon, who was absolutely lovely. I had to see her in regards to bowel symptoms that I had been having, I had been having them for a few years now, but they were just seeming to get worse. Near the end of 2017, I had had a flexible sigmoidoscopy done, as well as virtual CT colonoscopy. During this appointment, she said several times that she was so sure that it was endometriosis inside my sigmoid colon, which would most likely require me to have a section of my sigmoid colon removed. This confirmed one of my worst fears, although I was glad to know that I wasn’t going completely mad, and that I was in tune with my body. I just couldn’t believe that the other doctors had dismissed me so many times when I had gone to them about these bowel symptoms. Finally though, a doctor was taking me seriously about them. It was a blessing to get some answers, but it was so bittersweet.
I’m currently undergoing tests for my bladder issues. In May 2018, I saw a urologist, who was absolutely lovely, and really seemed like he wanted to help me. I had a urinary flow study done at the end of May, and KUB ultrasound done at the beginning of June. Although since having these done, he seems reluctant to help me, despite the fact that we didn’t get any answers, and that the urinary flow study showed that I am retaining. It is so hard to be fobbed off by more doctors, who at first seem like they really care about me and want to help me have a better quality of life.
I am waiting to have a CT scan done of my chest, due to the fact that I am having symptoms of thoracic endometriosis, which is pretty frightening.
The symptoms that I get due to the endometriosis, and other pelvic/gynaecological issues are: heavy periods; pelvic pain; pain in my uterus; pain in my ovaries; pain in my Fallopian tubes; pain in my flank and kidney area; discomfort and pain in my lower back; pain in my hips which radiates up my sides; pain in my bowel; bowel spasms; rectal pain; rectal bleeding when I am on my period; frequent diarrhea; abdominal swelling and bloating (which results in me looking heavily pregnant, and feels as though my skin is going to tear open); the feeling of having bricks weighing my tummy down; the sensation that I am bleeding internally; extreme nausea; pain across my lower abdomen; discomfort and pain in my upper abdomen; pain which radiates down my legs and into my feet and toes; buzzing and tingling sensations in my pelvis, lower abdomen and legs; reduced sensation and numbness in my legs and pelvis; sciatica type pain; pain and discomfort in my bladder; urinary urgency and frequency; pain while emptying my bladder, as well as pain when my bladder is filling up, and pain that makes it hard to stand up straight after emptying my bladder; blood in my urine; pubic pain; pain with sexual intercourse; pain in vagina; dragging/pulling sensation in womb; feeling of fullness and heaviness in womb; burning sensation in pelvis; spitting up blood when on my period; tasting blood in my throat when on my period; breathlessness (which is at its worst when I am having my period); endometriosis cramps and pain in my chest and under my ribs (when I am having my period or a particularly bad endometriosis flare up).
My symptoms and my pain always get worse the week before my period is due, and during my period, although the symptoms are constantly quite severe.
In all honesty, I can’t believe that in 2014 I thought that things were bad, and I wish that they were that bad now. Honestly, how things were back then, look like a walk in the park in comparison to how things are now. Endometriosis really is ruining my life, and it is taking over my life. It is completely debilitating, and it affects pretty much every aspect of my life. I have to spend the majority of my time led in bed, or led on the sofa, because being stood up, or sat up, or moving around too much, causes the pain to increase.
So there you have it, my very long, and probably very boring, endometriosis story. Congratulations if you have read it all, and congratulations if you haven’t fallen asleep while reading it! I wanted to share my story because endometriosis is such a misunderstood disease, so many people just think that it is a bad period, and that I am being a drama queen when I complain about my pain. Trust me, I’m not.
My endometriosis story is far from over, and it will never be over, although I can hope with all my heart, that there will be some times that I will get some respite from this soul crushing disease.
I honestly can’t thank my amazing family, my wonderful boyfriend, or my fabulous best friends. I really couldn’t continue to fight this battle without your love, support and help. You all always make me smile, and make each day so much easier. You make this fight worth fighting. I love you all so very much. And I am so grateful for my endometriosis sisters, you are all such incredible warriors, please all keep on fighting.
Sending you all so much love, and light, and positive vibes. Stay strong.
Written By Sophie @ http://www.sophiesendometriosisstory.wordpress.com