Hi all,
I apologise in advance for the long post but I feel I have something to share that could help other people and I want to return the favour to all the people who helped me with their posts in the past.
I started my period at 11 years old. At around 14/15 years old, I went to the GP complaining of bad period pain and an upset stomach every time I ate food leading to diarrhoea. I was told it was IBS and accepted this. I was also given the contraceptive implant.
At 19, I went to a new GP and complained of the same thing. I was given a colonoscopy which found nothing (which was a relief to not have an IBD) and a blood test for coeliac which also found nothing. Again I was told it’s just my IBS. I was on a replaced contraceptive implant at this point.
At 23, I stopped the implant and changed to the combined pill. At 24, I started experiencing pain when having a bowel movement and frequently needing a wee. The pain on my bowel movement was two-fold: a pain deeper in the rectum when I was pushing and a pain on release as the stool stretched my skin. I went to the GP and was told I had anal fissures. After two rounds of Botox, the anal fissures went away but I still had the rectal pain when pushing.
At 27, things had gotten worse and I was bleeding in my stool on my period and was in agony most times I passed stool with it worsening on my period. I would frequently have random lightning pain in my rectum when on my period where it was so bad it would cut me off mid sentence even in work. I had groin pain on my left side and back pain throughout the month. However, my ‘period pains’ (I.e. abdominal cramps) were nowhere near as bad as the pain when passing stool.
I’d had enough of suffering in silence and asked my friend how she dealt with the rectal symptoms of a period. My friend said she didn’t have to deal with these symptoms because she doesn’t experience them. It was at this point, 16 years after my first period that I realised something wasn’t right. I researched online and thought that it was most likely that I had endometriosis. I told this to a new GP in Sep 2023 and listed out my symptoms. I also mentioned that sex was quite uncomfortable for me. The blood in the stool got the attention of my GP and I was asked to do a FIT test. When I did the test I was on my period and I could see the blood in my stool and knew the result would come back positive, which it did. The fact that this blood was cyclical fell on deaf ears and I was rushed through for a colonoscopy on the two week cancer pathway. Between Sep 2023 - Mar 2024 I also had: TVUS, CT scan, barium swallow test, sigmoidoscopy, endoscopy, countless blood tests. Nothing of note showed up. During this time, the pain in my bowels and rectum had got so bad with me passing out on the toilet and a call to 111 told me to go straight to A&E who told me it was just wind.
Although I was grateful to the GP for the two week pathway cancer referral for a colonoscopy on the off chance it was cancer, I did not suspect that cancer was the cause of my problems. The colonoscopy found a single haemorrhoid that was too small to band during the colonoscopy. I thought surely this little haemorrhoid isn’t causing all my pain. I went to the GP and asked a referral to a gynaecologist as, in my mind, the fact that all the test results showed nothing meant I was now more likely to have endometriosis. My GP wouldn’t refer me to gynaecology because ‘the colonoscopy didn’t show endometriosis’. It is of course quite well known that colonoscopies don’t know show endometriosis but this does not mean you don’t have it. Instead I was told that the haemorrhoid was causing the bleeding and the pain and it just got worse on my period.
Having been brought up to trust in doctors I accepted the diagnosis. In the back of my head I was also worrying about how dramatic everyone (including my family) thought I must be being over a single haemorrhoid that was too small to band. In July 2024, I had a smear test and mentioned to the nurse that I was quite tight ‘down there’. She took a quick look at my medical history there and then and said she would speak to the specialist GP in women’s health at my surgery. This is a different GP to the GP I had spoken to back in 2023. This new GP asked me to come in for an appointment after looking at my medical history and said ‘I think you might have endometriosis’. She referred me to a gynaecologist. Wow, as you can imagine I was overwhelmed and overcome with emotion that someone with any actual power had finally recognised this.
I am so grateful that I was able to be seen privately through my partners health insurance via work. I booked a private appointment with the endometriosis specialist gynaecologist who runs the BGCE at my local hospital. He said in my first appointment that I could have endometriosis and sent me for an MRI in October 2024. Everything was clear in the MRI except for “a small area of effacement of the upper rectovaginal stripe” which the consultant said “could indicate the presence of small volume endometriosis or superficial diffuse endometriosis”. I was slightly disappointed with this as I felt I had so much pain that there had to be more endometriosis there than the MRI had indicated. The consultant agreed to a laparoscopy on the back of these results, though I’m not sure if being private had anything to do with this decision.
After a Shingles infection in my eye and face delayed things somewhat, I had my laparoscopy on Friday 11 April at 29 years old. The laparoscopy found Stage 3 endometriosis. To quote the anaesthetist, I “was covered in it”. The endometriosis was on my bowel, rectum, bladder and the tissue on left side of my hip. My bowel and uterus were fused together due to adhesions of scar tissue from the endometriosis. This was excised during the laparoscopy. There was also dried blood around my stomach from previous periods where the endometriosis had bled but had not been able to leave my body. My uterus is enlarged indicating I may have adenomyosis too. I am four days post surgery and although I am in some pain, the pain is nothing compared to endometriosis (and shingles). I feel like this could be the start of a new life for me.
This has been a long post which reflects a long period of time over half my life. There are many regrets and mistakes I have about my life. I regret that I accepted the doctors word so many times and didn’t keep going back out of fear of being seen as a hypochondriac or drama queen. 14, 19, 24, 27 years old with so many gaps in between. Why did I give more respect to the opinion of others about my body more than my own? My biggest regret is taking the answer of a small haemorrhoid on face value. I should have pushed more for the gynaecology referral at that point as it was only by sheer luck that the smear test conversation happened which got the ball rolling.
I also put too much hope in the MRI despite reading enough to know that MRIs do not give a complete picture of endometriosis.
I am also incredibly lucky to have been able to go private and there is not a moment since surgery I have forgotten this.
My advice to anyone would be to trust your instinct and do not take no for an answer until you have spoken to an Endometriosis specialist. I know this can be tough with every hurdle and setback but please do not lose the motivation to keep pushing and get the answers you deserve about your body.
Should I push my GP?
No endo found during Lap - What Next???
Hoping someone has experienced similar
Endometriosis or Colon cancer??
Rectal pain and poo talk (hopefully not too much info) 💩
