FROM “JUST BAD IBS” AND “ARE YOU SURE YOU’RE NOT JUST STRESSED” TO A LIFELONG CONDITION.

At the end of 2017 I started experiencing severe abdominal pains, heavy periods lasting over 10 days and the periods happening every other week. Now, coming to the end of 2020, I have some answers to this issue and awaiting further information and the options available for me for my next steps on this journey. That’s 3 years of this ongoing issue. 

3 whole years. 

I don’t know why but whenever a woman goes to see a doctor about her pain, she is automatically dismissed as struggling with stress or depression - as if a woman doesn’t understand her own body and when she is experiencing pain. This is one of the reasons why it takes so long for women to get diagnosed with any pain condition, especially gynaecological issues. So when all of this kicked off at the end of 2017, I had not long had my rather flakey and dismissive Fibromyalgia diagnosis and was sent to an occupational therapist. When I first went to the urgent care centre, which is at my local hospital, the Dr just looked at my file and said it was just my Fibro…then gave me ibuprofen. Ibuprofen does FUCK ALL for me. Great. We roll into the new year, already on my 4th period of 2018 at the start of February, collapsed in pain on my way home from a job and several hours later I was admitted into hospital because they thought it was my appendix. It wasn’t. To be fair to the Junior Doctor who admitted me though, it did come across as if I had appendicitis due the the severe abdominal pain and fever. 

May 2018, I don’t even know how many periods I was at from this point but either way it was too many. A sigmoidoscopy was booked in because doctors were starting to think it was bowel related. I don’t know who needs to hear this but if you can handle a camera going through and around your bowels without sedation, pain relief or gas and air, then your pain tolerance is pretty high and something isn’t right - a nice way to worry the team I had for this when I was 21. Back to a gynaecology referral I went. I’d already seen two gynaecologists at this point from my trips to A&E. 

This next gynaecology consultant I was on a back-and-forth journey with from October 2018 through to May 2019 when I had my first laparoscopy. To begin with, this consultant just wanted to tell me that “everyone experiences bad periods at some point” but when she did an examination I cried in agony. This made her turn and say to me “it’s not supposed to hurt” - hello, red flag?! Oh no, let’s not acknowledge that properly. Let’s also not forget when this consultant told me to overdose on medication for the “period pain.” They told me to take the medication when I was in pain on my periods - okay so constant pain and constant periods…tell me how that works? Still, they wouldn’t actually acknowledge my pain and gave me medication for IBS. On the 22nd May 2019, I finally managed to get a laparoscopy to have an investigation. Didn’t investigate the side I said was worse, they pointed out my “dilated bowel” (could not empty it 12 hours after my last meal because I was nil-by-mouth - questioned their knowledge of basic human biology at this point) and said it was just bad IBS. I was left with the mirena coil (inserted during the laparoscopy because of the pain I experience just being examined) and the implant in my arm…for 13 weeks. 13 weeks of two forms of internal contraception, even the sexual health nurses were confused why I was left like that.

November 2019: a new hospital and a new consultant because my GP was also done with how I was being treated and ignored. It was pure coincidence that my new consultant (after I had to switch appointment slots) specialised in gynaecological health issues. Immediately they had already gone through all of my file, read through every detail that was there and went through it all with me to check my symptoms and issues I’ve been experiencing. They acknowledged my pain and so I began my journey of investigation, starting with the less invasive tests: ultrasounds (pelvic and TV) and MRI. Then, come February 2020, we were ready to book in the laparoscopy which was then delayed due to COVID. 

September 11 2020: I arrived at the hospital at 1pm ready to be admitted and await my laparoscopy. Once I was out of the laparoscopy and recovering in my room, I was told it would be a six week wait to speak to the consultant about what was learnt during the laparoscopy. October 28: a phone call appointment (more anxiety for me) and in the end a two minute conversation. Turns out I had a deep pocket retraction formed on my left side which was showing endometriosis. I’m now awaiting to speak with the consultant face-to-face about it all properly and have a look at the images to grasp a better understanding and we can plan the next steps - either way that still means more surgery. 

Answers. After 3 years and me starting to believe it was in my head because that’s been pushed on to me for so long that I was doubting my own pain, even though it is severe and stops me from doing a lot of things…like basic functioning. It’s not just bad IBS, I have cells forming and growing in places they shouldn’t be. It’s weird to say I was happy because it’s shit but at the same time it’s an actual answer, well, start of an answer. 

Unfortunately, I am lucky it’s only taken 3 years. The average for women to get a gynaecological diagnosis is 7.5 years and, for a lot of women, it takes a whole lot longer. That’s a long time to be in pain with no answers and no plan of action to be able to manage it…that’s terrifying, yet, it is a reality we are still in.