My endometriosis was misdiagnosed as IBS

Helen Brook, 36  from West Yorkshire had struggled with bowel symptoms since her teens with experiencing bloating and pain that got worse when she reached her 20s. After seeing various GP’s, and bowel specialists, they were unable to find the cause of her bowel symptoms. They told her she had irritable bowel syndrome, despite also experiencing pelvic pain and heavy periods. It wasn’t until this year that Helen was diagnosed with endometriosis, a condition where the womb lining can attach itself to other organs outside of  the womb.

Here in a Q&A, Helen shares her experiences.

Helen's Story - My Endo was misdiagnosed as IBS
Helen's Endometriosis was misdiagnosed as IBS

Thanks for talking to Bladder and Bowel Community, Helen.

When were you diagnosed with endometriosis?

“I had a pelvic MRI scan in December 2022. I had to chase the results repeatedly and then I was diagnosed with deep infiltrating endometriosis in March 2023. I was also diagnosed with adenomyosis in July 2023.”

Can you tell us a little bit of how you came to have a diagnosis of endometriosis/ bowel endo?

“In 2021 I had a break from my contraceptive pill and when I restarted, the bleeding didn’t stop. I went to my GP who referred me for an ultrasound. The ultrasound showed a polyp and I was referred to gynaecology. Several months later I still hadn’t had an appointment and my bleeding persisted. I became anaemic and this kept  on causing me to pass out. I paid privately for a hysteroscopy and he didn’t find a polyp.

I was then referred back to the NHS as I couldn’t afford any further treatment privately.  It took a long time to get an appointment with the NHS and I seemed to get lost in the system for a few months. Towards the end of 2022, I saw that a friend on Instagram had a pelvic MRI through the NHS for the same condition as me, so I decided to ask for one to see if they could work out what the ultrasound had seen, and that the hysteroscopy hadn’t.

I had the MRI in December 2022 and was diagnosed in March 2023. Because of the extent of the endometriosis, I had to be referred to a BSGE (British Society for Gynaecology Endoscopy) specialist endometriosis centre. Their review of the MRI images also confirmed endometriosis and signs of adenomyosis.

What symptoms did you experience when diagnosed with endometriosis?

“I have had issues with my bowels since I was 15 and I didn’t get diagnosed with endometriosis until I was 35. My first symptoms were bloating and pain and then as I got into my 20s I started to experience diarrhoea with urgency too. I now suffer with diarrhoea and constipation, along with lots of cramps and pelvic pain. The pain sensations can be really variable. I experience burning, shooting, stabbing and cramping pains.

Over the years I’ve seen many GPs, dietitians and a gastroenterologist but nobody ever suggested my bowel symptoms could be caused by endometriosis. I don’t feel they looked at me as a whole person, instead they took the bowel symptoms in isolation and diagnosed me with IBS.

I have always experienced heavy, long and slightly irregular periods. I had some issues with conception and also I developed pre eclampsia in my first pregnancy, despite having no risk factors. In a lot of ways I am a textbook case for endometriosis but no one ever made the link.”

Did you experience any issues getting referred by your GP?

“The GP referred me quickly for an ultrasound scan and in the past I’ve had blood tests when I felt there was something wrong with my hormones. However, none of them ever suggested endometriosis to me.”

Tell me about  your experience of being diagnosed with IBS before finally finding out it was bowel endo?

“I first went to the doctor at 15 for bloating and pain. He did a blood test which came back normal and that was it. Over the years I found myself regularly visiting the doctors and always having the same experience – a blood test (presumably for coeliac disease) and nothing further.

Years later, I also had a faecal calprotectin test and that was in the normal range so I had a working diagnosis of IBS. I was given lots of different antispasmodics to try and peppermint capsules, but none of these ever helped. In fact, the high dose of peppermint tablets made my diarrhoea significantly worse.

In 2020 I paid privately to see a gastroenterologist and he officially diagnosed me with IBS. He asked the GP to trial me on amitriptyline, which has helped with the diarrhoea and pain to some extent, however I found it difficult to get used to the grogginess.”

Did you feel that IBS was a wrong diagnosis at the time?

“I accepted that I had an irritable bowel in that something was irritating it, but I didn’t know what. I didn’t find the typical IBS recommendations especially helpful. I trialled the low FODMAP diet under a few different dietitians and every time my symptoms got worse. I also felt that my symptoms seemed quite extreme at times for IBS. I had discussed the idea that maybe there was something that was linking the whole range of symptoms I was experiencing with family, but I could never identify what. I didn’t know a lot about endometriosis but most things I read suggested that symptoms were mainly an issue during periods, but as I was on the pill back to back I wasn’t having regular periods and experienced pain all the time, so I didn’t think that really fit me. Of course, I have since found that endometriosis symptoms can affect you all month and not just during menstruation. Now I don’t class myself as having IBS, I say I have bowel symptoms as a result of endometriosis. The NICE guidelines actually list endometriosis as a differential diagnosis to IBS. I feel IBS is a diagnosis you get when they can’t find anything physically wrong with your bowel, which isn’t the case for me.”

How did you push to get the correct diagnosis?

“I didn’t really, I think I got incredibly lucky that I saw someone on Instagram who had had a pelvic MRI, otherwise I wouldn’t have known to ask for one. Which is incredibly frustrating when I have seen so many professionals over the years. I just don’t think the knowledge of endometriosis is anywhere near good enough amongst front line healthcare professionals, most people seem to think it’s just a period condition!”

What treatment have you had/ are having for endo?

“I am currently on the waiting list for excision surgery and a hysterectomy. It’s very important to be aware that a hysterectomy is not a cure for endometriosis, it is a cure for adenomyosis, as this is a condition that directly affects the uterus lining. I have completed my family and therefore I am lucky not to have to consider fertility any longer. During the surgery my sigmoid colon and uterus will be separated, I will have a lesion removed from between my cervix and rectum and have my cervix and uterus removed. My ovaries will stay for now. The surgeon will also check around my body for any more signs of endometriosis and excise anything he finds.

“In terms of symptom management, I take the combined pill back to back to prevent heavy bleeding and pain with periods. If I have a pill break I take tranexamic acid to reduce the volume of bleeding. I take amitriptyline for pain. I have learnt some dietary triggers that make my symptoms worse and avoid those, as well as being teetotal. I have a TENS machine and use heat packs regularly.”

Do you have any support from friends/ family in regards to your condition?

“Yes, my family is very supportive but they also don’t really know much about endometriosis, so it’s a big learning curve for us all. I am lucky that I have made some good friends through my chronic illness Instagram account and I find their support really beneficial.”

What coping mechanisms do you use to help you through your endo diagnosis?

“That’s a difficult one! Some days I am accepting of my condition and other days I feel quite down about it. I think the most important thing is to be kind to yourself and try to give your body what it needs, which for me is usually rest, routine and some gentle exercise. Being open about the days when I am struggling is also better than pushing myself too much and suffering for it. I work part time and from home which is really good for my mental and physical health. I try to keep involved with the online endometriosis community and I have learned so much from other women, however I try to limit my intake of negativity as it can sometimes make me feel overwhelmed.”

How are you doing now?

“I actually feel really relieved in some ways to have my endometriosis diagnosis.

It’s good to finally have something concrete that makes sense and explains so much of what’s going on. I didn’t totally relate to an IBS diagnosis and I felt lost when none of the treatment suggestions had ever really worked for me.

Now at least I have a path to follow and I really hope surgery brings me some kind of relief. However, I would be lying if I said I didn’t feel incredibly daunted by the prospect of quite invasive surgery, especially when I am a mother of two primary school aged children. I have no idea when the surgery will be though, so I’ll cross that bridge when we come to it and for now I am trying not to overthink it!

I do feel very frustrated about the lack of knowledge and awareness about endometriosis though, research and understanding is seriously lacking.”

What would you say to someone who is experiencing symptoms of bowel endo?

“If you have bowel symptoms please do some research on endometriosis and possible signs of the condition. Make notes on how your symptoms are suggestive of endometriosis and visit your GP. MRI scans and ultrasounds can show endometriosis, however a clear scan does not mean you don’t have endometriosis. Lack of skill/ experience of the radiographer can provide issues and also superficial endometriosis is unlikely to show anyway. Push to be listened to, I really wish I had done. Good luck!”

We’d like to thank Helen for sharing her story, we hope it may help others to recognise symptoms and get the help they need too.

You  can read more patient stories and learn about the symptoms and treatment of endometriosis on the Bladder and Bowel website.  If you are suffering with any bowel symptoms including pain and bleeding that lasts for more than three weeks then it is important to visit your GP to get your symptoms checked.