IBD or Endometriosis: struggling finding diagnosis

[fieldsofsnow]

Hi,

I apologise in advance for the long-winded post, but I am wondering if anyone has had a similar experience.

I am a 24 year old female, vegetarian (mostly vegan) diet. Since around the age of 13 or 14, my BM's changed significantly--as I started to 'need to go' around 7-9 times a day on average, on a good day, 5 at most. Stools are never 'normal'; either diarrhoea or what is 'almost' that. This carried on until I was 19 or 20, when I started to take notice of mucus in my stool, with three very bad instances of -a lot- of blood passing during a diarrhoea attack. At this time, my mother was diagnosed with very severe Colitis, so this prompted her to push me to get a colonoscopy. Results were normal; they found two polyps, and a few internal haemorrhoids, which were benign, and the doctor removed them. Suggested it was "maybe IBS". He suggested I do an elimination diet because I likely had sensitivities to milk and gluten. So, I have been vegetarian, gluten free, and dairy free for the past four years.

At first, the improved diet seemed to help with my symptoms, I think I probably have to use the bathroom less infrequently now-- around 4-5 times a day, still sometimes 7 when I am having an 'attack'.

The bloating I am experiencing has become really awful; even after I eat only a small amount. The stomach cramping is constant throughout the month but even worse during my period -- worse before I have a BM, and also horrible during the time in which I am having a BM-- it is almost like my stomach and colon are being squeezed so hard that they feel like they will burst. In the past year or so, this has become worse: stomach pains, stabbing pains all and cramps all over my abdomen and pelvic region, radiating into my back (sometimes so painful that I have been on my way out the door for the hospital, but they reside after around 20 minutes). I also have bouts of nausea throughout the day, dizzy spells, extreme joint pain and fatigue.

Now, here is where the frustration comes in: I have also been having sharp pains shooting into my abdomen during sex, and my periods have become increasingly more heavy, longer, with more clotting, etc. I was referred to a gynae; he brought up endometriosis, and how the bowel was likely involved. I thought "thank you, someone can finally affirm that I am not crazy, and I can have a proper diagnosis." However, after a laparoscopy last month, the surgeon came out and told me that she didn't find any endometriosis, and said "maybe it's the bowels.''

Now, I am back again, feeling absolutely exhausted searching for answers, and feeling ignored by my GP and other doctor's. I am not making this pain up; I am in agony almost every day; and the joint pain and fatigue has become increasingly worse, causing me to take a lot of time off of work. I have asked my GP at least 6 times for a referral to a gastroenterologist, but they have said "let's do some stool and blood samples before we consider that"-- these have all come back normal (although my WBC was low two months ago).

Now, I am here to ask if anyone has had a similar problem, and what they have done to find a diagnosis. I know that IBS is debilitating at times, but I feel very strongly that it is not just this, as I feel like my whole stomach and lower abdomen/colon/pelvis are all affected, every day. Is it possible that the colonoscopy I did a few years ago would have not detected IBD? Is it possible that something can be diagnosed as IBS at first, but can gradually become IBD? How can I make my GP take me seriously? If it is IBD, could that be causing the pains I have during intercourse?

Thank you for taking the time to read-- any advice would be very helpful.

[Valbaty54]

Hi,

You are having a bad time! I was diagnosed with colitis just over a year ago, after appendicitis. Just mentioning ' change of bowel habit' to the GP sent me into the fast-track check for bowel cancer via a colonoscopy and it was identified. Your symptoms sound like colitis, especially as your mum has it and it tends to run in families. I'm surprised your bloods and samples are not showing problems. I certainly could not survive on a veggie/vegan diet as veg, fruit and pulses are the worst irritants for my tubes. Would you consider trying chicken, fish,eggs, rice, mash, pasta, soups, smoothies, bio yogurt? Nothing raw, no skins, pips or seeds. If you take painkillers, avoid anti-inflammatories which can make things worse. Just paracetamol. Hope you make some progress soon with your diagnosis.

Val

[willow24 Administrator]

Hi hun, sorry to hear you having such a rough time. Have you had a trans vaginal ultra sound scan as it sounds like polycystic ovaries to me. although this would not affect your bowels. From what you describe and the fact your mum has colitis then I would say IBD for sure. Have Drs asked you to do a faecal calprotectin test? This determines IBS from IBD, IBS cannot turn into IBD but most IBD suffererrs are wrongly diagnosed for years as having IBS before the correct diagnosis.

Hang in there x