My Endometriosis Journey

Today I'm writing about my personal journey with endometriosis, as well as some facts, figures and information I have picked up along the way. I feel that talking about periods and women's health is always a topic that leaves you feeling vulnerable, but I feel it necessary to raise awareness for others that I share my experience today.

Having posted an Instagram story sharing an image of somebody else's journey, I had over 15 replies in the space of an hour, of girls and women informing me that they too, were suffering from or trying to get a diagnosis of Endometriosis. I also received many questions asking me how I had managed to find out that it was Endo that I was suffering from. So here I am today, to start a conversation and hopefully educate somebody new!

So, what is Endometriosis?

Endo (for short) is a condition whereby a tissue that is similar to the uterus lining, is found outside the uterus, around the body, usually in the pelvic cavity. According to Endometriosis.org, 1 in 10 women suffer from it. This equates to 176 million women. Further from this number, 30-40% of those who suffer, will not be able to have children and 50% of women who suffer, will struggle to get pregnant. However, Endometriosis does not always equal infertility.

After seeing this figure, I realised quite how appalling the next statistic is: In a Psychosocial Study of 101 women with Endometriosis, there is still an average delay of EIGHT YEARS from the first signs of endometriosis before diagnosis.

Endometriosis cannot be prevented, but lowering estrogen levels in the body can prevent further build up of endo cells. The cause is unknown and there is no definite cure.

Since the age of around 13, I have suffered with awful period cramps, pelvic pain, PMS and migraines. When I got to 14/15 years old, I was missing school regularly at the beginning of each menstrual cycle due to the intolerable aches and pains I experienced. Not only were they painful, but they were HEAVY too, which then stopped me from doing sporting activities that I usually loved, out of fear that I might have a leak or mishap. At 15 I went to the doctors, where they prescribed the combined pill in order to attempt to reduce the pain and heaviness. Between 15 and 17, I had tried 4 different types of the pill - Rigevidon, Cilest, Loestrin and Desogen, none of which had even taken the edge off any of my symptoms. I went back to the doctors time and time again, one of the medicines I was prescribed was Tranexamic acid - a medication that is used for heavy periods, but once again there was little success. My periods would often last 7-8 days, without showing any signs of getting any lighter on day 5.

What's more than suffering from bad period pains, I also started to notice that I was suffering with sharp pelvic pains when I was not due on or menstruating. These would come on and last a couple of minutes at a time, throughout the day, at random. So aged 17 I went back to the doctors where they suggested I go on the Contraceptive Depo Injection. The doctor told me the depo would be the best for me as it would stop my periods all together, or I would have a very light bleed, due to the hormone being progesterone only, stopping the menstruation cycle, preventing ovulation, thinning the endometrial tissue that would mean a lighter / no bleed and so less pain. So I went with the doctors advice, had my appointment and my periods stopped - AMAZING. No period pains, no PMS and no embarrassing moments to worry about. I had these injections once every three months for almost three years.

For the first year of having the depo, I felt like I could live freely with no worries nor pains and it was incredible, however, after a year, all the symptoms of a period came back even without having an actual bleed and I also began to start getting pain during sex (sorry mum), so I made the decision to stop having it, as it was affecting my mental health as well as no longer helping my aches and pains. I took 11 months for my periods to come back after stopping the depo and when I finally did in January 2019 - my mental health had never been worse.Following this experience, the doctors then said it was time to look for endometriosis. Finally I felt I was being taken seriously. For the mean time while I waited for my appointment, I was put on the mini-pill, to stop my periods but with hope the lesser hormone would prevent the detrimental mental health side effects. No hope. Unfortunately my anxiety went through the roof with this new pill, and again, I came off the hormones.

In May 2019, I had an ultrasound on my ovaries and uterus due to going to A&E for extreme pain in my pelvis (still no periods however following the one off in January). During the scan I was told everything looked healthy and fine but that I should wait for my gynecologist appointment. This is always extremely discouraging. Yet again, another doctor had more or less told me that my pain was normal and to basically, get on with it.

Fast forward to September 2019, I had my gynae appointment, having an internal examination where my doctor decided that from this examination, there were no reasons to believe I could have endometriosis as everything felt normal. THE ONLY WAY TO GET A DIAGNOSIS OF ENDOMETRIOSIS IS THROUGH A LAPAROSCOPY. So for my doctor to make this statement was a bit of a shock and left me disappointed and disheartened about ever truly understanding what was happening in my body. BUT at the end of the appointment my doctor then asked if I would like to be added to the waiting list for a laparoscopy to entirely rule out endometriosis and that during this surgery they would insert the mirena coil as my last option for hormone treatment to stop my period pains. THANK GOODNESS.

Time kept ticking and there was no sign of my op, so I had the mirena coil fitted in July 2020 as my pains had gotten bad again but still no periods - I had only had one period in four years at this point. The coil was the worst form of contraception that I had ever experienced. My whole personality changed, as I felt anxious over every living, breathing thing. I became so much more agitated and extremely emotional, so within 6 weeks - I had it removed. And the day after it was removed, I had my first proper period in 4 years. All the symptoms I experienced as a teenager, I have been experiencing once again over the past 3 months, and the irregularity meant since September 2020 to now, I have had a period every 7-10 days, with bloating, PMS, tiredness & pelvic pains taking over again. So unfortunately, I hadn't just "grown out of" the pains, the way I had been told I would growing up. When working one day, an older lady asked me if I was pregnant!! Oh how I had missed bloating...

Over a year since being put on the waiting list, I finally got my surgery date, OCTOBER 2020. I made my way up to Norwich for the surgery, my dad dropping me off at the door due to COVID ruling out anybody being able to accompany me. The consultant came round and explained the procedure - I would have a small incision made in my belly button, I would be filled up with air and a camera would be placed in the incision to see for any abnormalities or endometriosis cells. If there were to be any areas or patches of cells, they would make a second incision and if they could be treated, they would burn the cells there and then.

About 10 minutes after coming round, the consultant who had performed my surgery came to inform me how the surgery went, to my surprise, she told me that she had found two small patches of cells in my left pelvic cavity that she had successfully removed and sent off for a biopsy. There it was. She told me that "yes, you do have Endometriosis". I looked down at my stomach saw the wound on my left pelvis & my belly button as well as some extreme bloating from all the air that had been used to blow me up. It felt almost unreal! At the age of 21, after 7 years of trips to and from the doctors/ hospital, I now had proof that it had been endometriosis all along!

So that is my whole journey so far with how I pushed for answers and the experience I have had with symptoms etc. Endometriosis is something that never goes away and I am still trying to find the best treatment for me to reduce the pain, so in no way does a diagnosis mean it's over - but it definitely means I can now receive better advice and effective treatment going forward!!

I hope this blog post has given at least some of you hope that A) you are not alone, B) you will be taken seriously and C) that there is light at the end of the tunnel!

To end let me say this, Endometriosis should be spoken about. Women's health should be spoken about and as women, we should feel as comfortable talking about our periods as we are speaking about a headache. It is human nature to menstruate and you might just find somebody else is going through the same thing - as I did through one basic Instagram story.

If you have any more questions or want to chat to someone who has been through it, my dm's are always open! I obviously couldn't tackle every single situation I have been through on my journey here so I'm always willing to share & listen!

Have a lovely week,

Love, Lauren-Yasmin x