Is it endometriosis?

[Emilytheresax]

I started my period at 11 they’ve always been very heavy and very painful to point I’d be crying in pain. At 14 it got worse I’d be getting pains even when not on my period. I’d regularly be in a&e. So In the last year I’ve been to hospital maybe 4 times as no painkillers seem to help. I’ve been given co-codomal, naproxen and mefenamic acid I think it’s called. None have helped. Sex is so painful and I’ve never been able to put a tampon in because it’s so painful. I call them attacks when the pains come on, they normally come on every couple of minutes and last for no longer than 90 seconds. However there’s been times when passing clots that the pain will last for a straight 5-10 minutes and once I’ve passed the clot I’m fine. I’ve been told it’s ibs, anxiety and my diet. Recently it’s been awful, my legs keep going numb and I get shooting pains from my legs all the way up to my shoulder and sometimes even my face. It normally very deep down in the groin. No doctor is willing to listen about it being endo because of my age apart from the last doctor I saw in a&e who’s conclusion was suspected endo or a cyst. I’ve had many scans for cyst and they’ve never been able to find anything. It’s affecting my life because almost everyday I’m in some sort of pain and I’ve had to drop out of college because of it. It’s also affecting my mental health because I’m fed up of not knowing what is it. Should I push for the lap so that I can get treatment because they can’t treat me without knowing if I have endo and the severity of it and I just want to be able to do the things I enjoy.

[veneerofclass]

I’m truly so sorry you’re in this much pain and that it’s affecting you this much. Of course I’m not a doctor so please take what I say with a pinch of salt, but it sounds like endo could be a possibility. There are other pelvic pain conditions that have very similar symptoms to endometriosis but a gynaecologist can help you go through the possible options. Depending on your age doctors may not be comfortable doing a lap, I think it’s 21 in the uk I may be wrong, but there are exceptions to that. From what you’ve said it’s well worth pushing for a referral to a gynaecologist to figure out what’s causing all this pain. It can be a long process, it took years before they even considered that it’s not “just period pain” so I appreciate this is really difficult for you. It might be worth changing doctors, that’s what I ended up doing and it helped get me a lap and a diagnosis. In the meantime as the waiting lists vary depending on where you live, it might be worth seeing if you can go on the pill if you’re not already on it. It’s generally a very good treatment for endo, and can be taken back to back which might stop your periods temporarily and potentially the pain. Also seeing another doctor might help with your pain management as I’m sure that there are other stronger medications you can take to help with the pain. I’m not sure if I can be of much more help but if you have any more questions me and everyone else here are happy to do what we can to help.

[Emilytheresax in reply to veneerofclass]

I know that someone around my age has had one recently but it might be different under different hospitals. I’ve been referred to gynaecology in the past and they told me to come off my progesterone only pill as I had the implant as well but my bleeding was so irregular and the pill helped at first but went back to how it was before. So I came off and it got worse. So I got my implant removed and started the combined pill as the gp said to do before doing a referral as she said they’d likely say to do the same thing so it’d be a waste of time. So I’ve been on it for nearly 3 months and I’ve had 2 attacks which have caused me to go to hospital in that space of time. So many doctors aren’t educated enough. And now because of a doctor in may from hospital saying to try gastro they’ve now cancelled my gyno for gastro even though they have a copy of my last discharge notes where the doctor stated he believes it’s definitely gynaecological. So it’s very annoying that I’m not being listened to at all. I just want to be able to have tried everything and the only thing I can think to do now is just to know if it is endo or not because it’s honestly depressing not knowing what’s wrong with me.

[veneerofclass in reply to Emilytheresax]

Oh bless you, I thought I’d mention it as I wasn’t sure what options you tried. I’m glad that some hospitals do it, that’s the reason they gave me for waiting, but not everything doctors tell you is true after all!

You could try contacting PALS if you’re in the uk to try and get you appointment sorted again or at least for advice getting back to being under the pelvic pain team. It really is sad that not many doctors know much about conditions like this or what to do about them. I hope you can get you’re gynaecologist appointment sorted.

[Lovepenguins]

Sorry to hear this it does sound like Endometriosis I was diagnosed aged 11 and was always told its just a term for heavy periods. I'm now 31 and 20 years later it has taken over my life - recently had stage3 Endometriosis removed in a laparoscopy that I had to fight for. Thankfully research and awareness is now coming out and hopefully will provide more guidance but I'd get a second opinion and ask to be referred to a gynaecologist who specialises in Endometriosis. You can speak to PALS and they can assist with this by speaking to your gp x

[alex_on]

I'm so sorry to hear that

I had my laparoscopy a month ago. Im 17, my symptoms started when i was 13. I've visited a lots of doctors and they thought me I'm fine and there is nothing woring with me. Finally i find a doctor who listen to me and believe in my pain. Before laparoscopy I was so scared that they didn't found endo, but when I woke up after my lap I was finally diagnosed with endo stage 4 (many of doctors thought me I'm too young to have endo). So please - do the surgery. You have the right to know what's t wrong with you.

Good luck, I'm with you

Best wishes

Alex