Endometriosis Awareness month – My Journey

Hi all, so today’s post is about my experience with endometriosis. March was endometriosis awareness month and  I couldn’t let the month pass without sharing my experience.

What is endometriosis?

Did you know 1 in 10 women suffer with endometriosis, and it affects so many aspects of a women’s life.

Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. For more info head over to the Endometriosis UK website.

So if you think about your uterus, it sheds its lining every month leading to a period.  For women with endometriosis the bleeding takes places in all areas where the endometriosis is located and for me that was all over my pelvic area, but I will talk more about my diagnosis later.  Unlike the lining of the uterus the blood coming from endometriosis has nowhere to go and so causes inflammation within the body.

Every woman’s experience with endometriosis is different, and some women can have it with no symptoms at all, while others suffer with debilitating pain throughout the month, not just during your period.

Where it all started & How it progressed

So it has taken 30 years for me to get a diagnosis for endometriosis being misdiagnosed & dismissed many times by medical professionals as well as friends and family.

I started my periods at the age of 10, yep 10, I was still in primary school.  I remember my mum preparing me for it so it was not a surprise when I started. I remember having to be sent home in pain numerous occasions, and being told by the school nurse it was normal and all part of growing up, but little did I know it would get a lot worse later in life.

I knew my mum had always suffered from painful periods so thought it was just normal, but it is not normal.  It is not normal to have to miss school or work due to your period, but no one told me that.  I used to dread getting my period, I would feel sick and remember being sick in public when cramps came on really bad.

I was put on birth control by my GP who said it would help, and it did.  I was on the combination pill for a lot of my teenage life and also into my early 20s.  I still got my period and it was still painful but nothing as bad as when I was not on the birth control.  Not once did anyone think to investigate further, the answer was always birth control.

I came off the pill in my mid twenties and was fine for a while, then the pain started again so I went back onto birth control. The real change came after having my children.  I had been on and off the combination pill for many years and after having my children at 31 I decided it was not needed, and I didn’t want to be on medication all the time, as it surely couldn’t be good for me.

But my hormones were all over the place after having twins so my GP suggested I try a different pill, so I went on to the POP, the progesterone only pill. This time it completely stopped my periods…fantastic you may think, no periods woo hoo…but no it was not all fun and games.  I found that my mood was affected and I just didn’t feel myself a lot of the time, I felt numb!!

As my daughters grew older (they are now 8) I felt that I needed them to see what periods were, after all if they had not seen mummy have them how would they be able to understand what they were.  So off the pill I came, that was about 3 years ago.  Oh my I was not prepared for the way my life would turn upside down.

At first the pain was not too bad, but I started to notice pain outside of my actual period days.  I finally figured out that it was at the same time as my ovulation days, so I started to research this and found it was a condition that many women suffer with so did not I really investigate much more.

As the year progressed I noticed more changes and more pain.  My moods were all over the place, I would snap at anything and everything.  I was not a nice person to be around.  So I took myself back to my GP, he suggested the pill again, I said NO.  So he referred me for an internal scan.  This was about 2 years ago and it came back clear.

I was so confused and worried, where was all this pain coming from? why was I so moody? why did my scans come out clear? why did I still feel so much pain?  why was my day to day life being affected so much if nothing was wrong?

It affected every part of my life, I have to say I am one of the lucky ones who was still able to hold a job down and still function even though I was in major pain during most of the month and not just on my period.

So after the all clear I left it, I was sick of being sick. Endometriosis is not the only health issue I have had to deal with over the years, so I was fed up with it all and with life in general. I had been to the doctors so many times, been put on the pill, been told I had IBS, lactose intolerance, gastrointestinal disorder, but nothing I was treated for helped, and that was because I was being misdiagnosed.

This is common for women suffering with endometriosis, and despite so many of us suffering with it so little is known about it.

My diagnosis

So time went on, and life got complicated, my mum was diagnosed with triple negative breast cancer in 2018 so my attention diverted from my health to my mums.  Always at the back of my mind I knew I was not ok, and that I needed to deal with mum first and then start looking into my issues again.

So once my mums treatment ended towards the end of 2018 I went back to my GP.  This time I demanded he refer me to a gynaecologist and he did.  I am lucky enough to have private health insurance through my work so I decided to go private, unlike my previous scan which was on the NHS.

So off I went to see the gynaecologist, she seemed pleasant enough, and seemed a lot more sympathetic to my issues than my GP ever had been.  I felt positive that she would be able to help me. She did a quick internal examination at my first consultation and told me she thought I had fibroids and possible cysts.  I asked why they had not showed on my previous scans, she said it is sometimes hard for scanners to see things if they do not know what they are looking for.  She said she wanted to send me for lots of test and another internal scan with a specialist.  And there my diagnosis journey started.

As well as asking for internal scans she requested I have mammograms done as one of the issues I was suffering with was extremely painful breasts that expanded to 2 times their size 2 weeks before my period.  She said with my family history it was just to be on the safe side.

I went for my internal scans and the scanner said it was likely I had endometriosis and it was possible it has gone into my bowels, he also said I had ovarian cysts and that my menstrual age was much younger than my actual age and so my oestrogen levels were higher and feeding the endometriosis.  Wow I had a diagnosis!!! I could not believe it, but that had to be confirmed with biopsies. All the stomach issues all the pain it was not in my head there was something there and someone had finally found it.

At the same time I went for my mammograms and I had no clue that the mammograms would find early stage breast cancer!!! So my period issues were put on the back burner again while I got treated for early stage breast cancer.  The treatment for that finished in June 2019.  But in-between I did have a biopsy taken from my uterus and it came back clear the day before my breast operation.

Once my treatment for breast cancer had finished I decided to have a break before starting the investigations for my period/hormone issues up again.  I was tired physically and mentally and just didn’t want to go back to hospital any time soon. Anyway this is not about my experience with breast cancer, that story can wait till another day :).

So after a months break I went back to my gynaecologist to go over next steps.  She told me that she wanted to put me on the coil, I was not keen, she then started to suggest hormone tablets etc.  As soon as I heard this alarm bells rang as I had just been diagnosed with early stage breast cancer and so I knew what she was suggesting was not a good idea.  I needed to talk to my oncologist and get his view on all of this.  I decided to get a second opinion and was lucky to be given a suggestion from a colleague as she had experienced similar issues.

So off I went to the second gynaecologist who seemed really nice and basically said I needed to have a laparoscopic procedure to see what was going no inside, and that was really the only way he could diagnose my issues as being endometriosis.  I had not done too much research into what endometriosis was until after my procedure, dumb I know!! But I was so sick of being sick I as so sick of letting pain dictate my life that I did not want to consume myself with information online.  I was lucky very lucky as I had a deep excision specialist doing my laparoscopy, not that I knew that until after my op.

My op was scheduled for December 2019 and I was scared, despite having been under the knife a couple of times I was more scared this time, I didn’t know what they would find, it scared me a lot.

I won’t talk too much about the procedure as that will takes ages, but it as not pleasant.  I felt a lot of pain after and the recovery has been very tough.  But I still remember my consultant coming out to tell me it was not all in my head and he had found stage IV endometriosis that was deep infiltrating…not that any of that meant anything to me in my half knocked out state.  But it was so good to hear he had found something.

My recovery 

I am not fully recovered, I don’t really think anyone can be when why have endometriosis.  There is no cure, what I had is the number one treatment for endometriosis, deep excision surgery is the only real thing that can get rid of endometriosis and you need a specialist to perform it, not just any gynaecologist. It may grow back, it may not. It has left me with physical and mental scars.  4 months after the procedure and I am still recovering, I am weak in the area that was operated on, I get tired easily, I still get frozen pelvis and extreme pain in my lower back.  I was also diagnosed with Adenomyosis described as the evil twin sister of endometriosis, so I will never really be pain free, well not until I have my menopause or a hysterectomy, which I am not keen on.

The endo has caused my uterus to be pulled to the left of my body, my uterus is double the size of a normal women uterus and retroverted, I still have bowel issues, even though they are a lot better.

On a positive note I just finished my 4th period after the op and it was not as painful as it has been, less clots, less pain, less fatigue.  So I am hoping I will keep going from strength to strength.  My consultant has told me to give it 6 months for full recovery as he had to go pretty deep to remove my endometriosis.

My advice

Don’t ever give up, you know your own body.  Keep pushing for answers, look for answers and never ever give up.  I am glad I never gave up and finally got a diagnosis.  There are many helpful resources out there from endometriosis UK & the endometriosis foundation US, I will not attempt to give you all the scientific info, as I am no expert.

I hope my post was not too long winded for you and you managed to get to the end.  Feel free to reach out to me with any questions.

Atima xxx

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