Endometriosis or ibs: I've always suffered... - Endometriosis UK

Endometriosis UK

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Endometriosis or ibs

Ladybee95 profile image

I've always suffered from long heavy painful periods ever since I was about 13 - to the point I wear tampons and night pads and still have to change both within the hour otherwise I'll flood. I've tried the contraceptive pill, injection and patch and none have made a blind bit of difference - I was told this was normal and likely to be just one of those things. It wasn't until I was 17 that I started to suffer with diarrhoea on an at least weekly basis. I've been told for years it was ibs despite having no specific intolerances and no obvious pattern other than when I have my period and Including the week before and after. For about 3 weeks I'll have intense period pain specifically on my right ovary and it even swells like a golf ball and along with the heavy bleeding I'll have diarrhoea. The pain has me doubled over and I've been known to pass out as it can be that intense. My gynae has booked me in for a laparoscopy and on internal examination she noticed how tender my right side of me is,however she said my cervix looks healthy. However she has told me not to get my hopes up as she said it's probably ibs and I have a strong pelvic floor - her explanation to the extreme discomfort of intercourse.

Im now 23, fed up and not feeling like I'm able to plan or live my life without this constantly getting in the way. I'm hoping someone has similar symptoms to me and can help with what their outcome from their laparoscopy was. Endometriosis or IBS?!

2 Replies

Hi

I'm sorry to hear that you're struggling and have been for so long.

IBS is a diagnosis through exclusion of all other possibilities. Endo could explain your symptoms and as you haven't been tested for that yet, so it's really just guess work just now. Surgeons always seem to say that they doubt it's endo.

Do you know if your surgeon is bsge registered or has a specialist interest is endo? If you're not sure, you can find out by contacting their secretary. This really should be the case when you have a diagnostic lap for endo (it's in the NICE guidelines). So many laps are done by surgeons who are not experienced in endo who don't expect to find endo and low and behold, they don't find endo! 1 in 10 women are thought to have endo, so really, these surgeons should be expecting to a lot more endo than they do. I had a clear lap 2 years ago, my surgeon is was not experienced in endo and I've recently found out that I do have endo.

I was told for years that I had ibs, despite it not accounting for all my symptoms (I also have awful chronic fatigue). I was a good patient, did the fodmaps diet, gut healing diet paid to see a nutritionist privately and did all the other suggested things. It changed nothing, it's just progressively got worse and now I also have chronic back pain. After nearly 5 years, I've now been found to have endo and a weird fibroid thing that's pushing into my back passage and spine.

Not all endo symptoms are cyclical - mine are present all the time but do get worse just before my period. My periods are always light and not very painful either.

I know it's hard to push against the drs if they're being dismissive but just keep pushing until you get some answers and something will be help.

Good luck. X

Hi, I’m sorry you are going through so much. My 17 year old daughter has been going through the same thing. She had the depo shot two times , the first time it helped with the heavy bleeding and pain but the second shot didn’t help. Her Gynaecologist didn’t find endometriosis when she did laparoscopic surgery so she said it is IBS, so she had a colonoscopy which showed nothing wrong. So she continues to have heavy bleeding with clots and cramps and can’t go to school. She now has had the lupron shot and we are waiting to see if it works. My cousins daughter has the same problem and is getting better after having the IUD put in and not eating sugar or junk food, she is 60% better. I hope you get an answer soon.

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