Endometriosis UK

IBS, Endo or something else?


(Sorry in advance for the long winded post) 😬

Just wanted to give a little background on myself and wondered if anyone had similar symptoms / experiences to mine.

I’m currently 20 but started my period around 14. From day one my periods have been extremely heavy and extremely painful. My periods were irregular, I’d bleed for almost half the days out of the month sometimes and be extremely heavy all the way through. I was bleeding through pads, tampons, clothes, bedding and all sorts and the pain was just ridiculous. I lived with my dad and he didn’t know what to do to help me (bless him). I was prescribed the pill straight away to regular my periods to some extent but the pain and heaviness never really stopped, over the counter painkillers and then prescribed pain killers never really helped even codiene and other strong pain relief. Hot water bottles are my safe haven at this point! I then went into the depo injection which stopped my periods altogether and all seemed fine... until

About 2 years ago I was experiencing extreme nausea every day and started with abdominal issues such as diarrhea, constipation, abdominal cramping, menstrual cramping (despite no periods) but this was called down to IBS apparently.

Then recently I was having extremely painful sex, tightness in the vagina which felt like the muscles were contracting 247. It got to the point where I couldn’t insert a tampon without experiencing great discomfort and pain, which is when I got referred to a gynae.

I had an internal pelvic exam which was hands down the most pain I have ever experienced. The chaperone to the procedure had to hold me down as the procedure went on as I was kicking, screaming and crying and probably contracting all of my muscles making the pain 10x worse. A dipstick was taken at the same time which was a negative to any signs of infections.

My doctor said there was extreme tenderness inside and an “cervical excitation” which I have no idea what that is. She presumes I have endo (despite not having a period for at least 2 years??) which I understand is unusual. And I assume it has spread to my abdomen which explains all the other symptoms of the digestive system - or could this actually be IBS or other dietary allergies? Are the two tied together. Or could it be something other than endo completely?

My mum has IBS and my nana has had a hysterectomy due to cysts on the ovaries which turned into cancer in the neck of the womb. They both have had awful periods all of their life with similar pain and troubles. Could anyone connect the dots here or give me some advice/insight.

Thank you so much for reading and thanks in advance for the help and support!

2 Replies
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Honestly, the best course of action you can take is to have exploratory laparoscopic surgery to determine the cause. All your symptoms sound like endometriosis (IBS is often given as a diagnosis when endo is actually the cause).

What you’re experiencing, the pain, the heavy bleeding, the symptoms, none of them are normal, and you shouldn’t have to go through life like this. Taking pain meds and using the pill or injections is just masking the problem. The underlying issue is there, so you need to treat it. Start with a lap and see what results you get.


I have always had pretty much the same symptoms as you, apart from I had constant diarrhoea. I was diagnosed from a young age as having IBS and even an gastroenterologist confirmed the diagnosis.

Once when work with a GP doctor I told him about having IBS, he explained that a diagnosis of IBS is achieved more by ruling out other conditions as there are no tests to confirm IBS. He also said that a diagnosis of IBS usually means the doctor has not done their job properly.

I found out 2 months ago that I did in fact have endometriosis not IBS that I had been diagnosed with for many years by many doctors.


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