10 years of undiagnosed pain, please help

[BernieRose]

Hi everyone, I haven’t spoken to any other sufferers about this before so please bear with me!

About 10 years ago I started to get awful abdominal pain, cramps, passing out, sweating, shivering etc. I was referred to my local hospital who said that it might be endometriosis but that I would only get an operation when I wanted to have children! I was only 20 at the time so went with the codeine and naproxen prescribed instead.

After a few more years I also started taking contraceptive pill Femodene which really seemed to help. However 2 years ago I started getting migraines and was immediately taken off of the Femodene and the pain has come back ten fold.

It is like clockwork every month 7-8 days after ovulation. The first two days are just a dull aching pain but by the 3rd or 4th day I am doubled over in pain about 4 times a day and struggle to leave the house. Each set of cramps makes me need to empty my bowels and the pain is excruciating. After about 20 mins I’m usually so exhausted I just need to sleep. The pain wakes me up in the night and gets worse even if I roll over or walk. It is always in the lower left abdomen and my stomach gets very bloated and hard, you can even see a slight dent sometimes.

I’ve had two internal ultrasounds and told everything was fine. So many blood and allergy tests but fine too. Doctors suggested IBS but no changes in my diet make a difference. I have joined a new doctors and have another hospital appt at the end of this month but I’m so scared that after 10 years of trying to get a diagnosis it isn’t going to shed any light again.

I would love to know if anyone has had a similar experience or symptoms. I am upset I don’t know what the pain is or how to stop it and it’s starting to ruin my life as I can’t enjoy holidays or social events or go into work.

Thank you!

[Rach3187]

Well I went thru that similar thing to you and yeah the dr who i saw was confused first had all tests done. To see if I had ibs and didn’t and now do although I do have a small fibroid or something.... On fodmap diet and that’s helping a lot.... I always wondered if that was a sign of endo.......

[Fabbird]

Hi, is your hospital appointment with a gynaecologist? Given that your pain is clearly linked to your cycle, you really need to see one.

Endo is often initially diagnosed as IBS because it affects the digestive system. Given your symptoms, I'd say you need more investigation. Ultrasound should find a cyst or something like that, but it will miss endo. The only way to know whether it is endo is to have a diagnostic laparoscopy. Most of us have to push for this, so don't be surprised if you have to ask more than once!

[BernieRose in reply to Fabbird]

Thank you for your reply! Yes my appointment is with a gynaecologist and definitely going to ask for a laparoscopy this time round.

[Fabbird in reply to BernieRose]

Good to hear that you'll be seeing a gynaecologist. I should have said that I get something similar to you. The week before (and after) my period my bowel often becomes very active. I get sharp pain before and after a movement, feels like a knife up the bum (!). I know that I have some endo on my rectum, which is the likely cause. I've not been able to stop this pain happening, but it does help to know why - it takes some of the worry out of it.

[Rach3187]

Hmmmm that what I get at times and