What was your endometriosis symptoms?

[CluelessParent]

I’m trying to decide whether it’s worth me going to have the cut&camera for a diagnosis or not.

Ive always suffered with extremely painful periods, I spent every period as a teen on the floor crying and rocking from pain, as I got older it seems to have become more manageable, still painful but I just tend to get on with it now - but since having my youngest (7m old) I think they’re less painful so far, or perhaps the pain only lasts a day rather than the entire time.

But to list my symptoms:
Painful Cramps
Upset stomach for the first day of my period, then generally just the urge to go to the toilet throughout.
Weeing and pooing elevate my cramps, especially when pooing the cramps are quite sore/sharp.
My cycles used to be irregular in the sense that they were anywhere from 25 to 38 days, they are now between 40-50days.

I looked on the nhs and I tick a few boxes but I’ve never really given it much thought as most people talk about ‘period poo’s’ being pretty grim, and period cramps ect so k thought it was just part of the full joy of being a female. - but could it actually be endometriosis.. and then is it worth getting a diagnosis now? We’ve had two children and DP is set to get the snip so we’re definitely finished having children.

im interested to hear other peoples symptoms to decide what I do next.

Given that your cycles are long and irregular, I would look for ovarian cysts and/or fibroids first. This can all be investigated with an ultrasound.

@NeedleWielder Would that have been picked up on my scans during pregnancy at all? - as they looked at my ovaries and pointed them out at my scans and said everything looks normal? Or can they come up and go away?

Yes it is worth getting a diagnosis but you may well have to go private as waiting lists for gynaecology on the NHS are miles long currently. Do not be fobbed off and seek answers. There are reasons why this has been happening.

Your symptoms seem very similar to what I had as a teen and in my case the cause was endometriosis. I realise now that my problems with endo started upon onset of menses at 14, I always had very painful periods.

The irregularity of cycles may be caused by something like polycystic ovaries; blood tests can be done to check your hormone levels. Ideally you need a day 2 test done to compare LH against that of FSH; with polycystic ovaries there can be an excess of LH to FSH. Polycystic ovaries are follicles with multiple small cystic follicles on the ovaries; these can and do disappear only to be replaced by other cystic follicles. As these are so small also they are not always seen on ultrasounds scans. Endo deposits do not readily show up on internal ultrasound scans either, none of my internal scans ever showed endometriosis yet my uterine cavity was covered with endo.

Any symptoms that are cyclical in nature and or get worse up to and including menses should be checked to see if endometriosis is present. I used to get similar issues re pooing (such is referred to on here as javelin arse) and in my case at least this was cyclical and indeed due to endo.

Agree with Attila about going private, mainly because you will be seen relatively quickly and can arrange tests to see what could be causing the issues which has been said might be something other than endo. With NHS they are reluctant to diagnose as the surgery costs too much money so they usually start you on meds as they are cheaper. That was me 20 years ago and still the same for my niece today sadly.

You haven't said if you are on the pill or have ever taken the pill and if your symptoms get better with it or not.

For me it was horrific period pain, javelin arse, back pain, hip pain where I feel like I am in a vice, pain on ovulation alternating sides and the biggest one for me (and what I am currently experiencing now) is numb but painful legs, so painful thighs and then painful ankles but not calves. I know I have endo as I have had a laser lap and dye (laparoscopy) but I had to take all the meds first. I have deposits on my bowel so painful period poos where I actually thought I would pass out from the pain. I can compare it to labour pain. The leg pain I was told was deferred pain as I had deposits on the nerves that run through the abdomen. Same at Attila with ultrasounds, they showed my chocolate cysts (cute name for blood filled) but not any endo deposits. They were found with the lap.

I don't know what other websites people recommend but I have always found www.endometriosis-uk.org/ helpful.

Pain wise there are lots you can do to manage it apart from pain meds but still get those. I use a TENs machine, massage gun that pummels especially for my lower back pain, plug in heat pad and mental mindset similar to hypno-birthing. My endo doesn't respond well to treatment hence all of the above. It is like I am in labour every month, some months are a lot worse than others. You have my sympathies, very painful periods are not normal and should be dealt with.