Doctor suspects endo, would love advice.

[njcook175]

Hi all, I'm new here and recently heard the word "it could be endometriosis" from a doctor.

I've always had painful periods, always known that they weren't normal. At school I would have to be sent home as the cramps would go from my front right through my bottom up my back. At the moment my symptoms include painful heavy periods, the pains are so bad I can't work the first 2 days of my period. The cramps seem to travel down my legs and I work on my feet so it is awful. I get cramps and spotting inbetween periods, drenching night sweats and hot flashes for the past year and as well ive developed a deep achy pain in my lower left side, this is what sent me back to the doctor as the pain seems to worsen during sex. I get terrible bloating and at the time of writing this look about 8 moths pregnant. I was starting to lose hope as it feels like I've been tested for everything. I've had blood test after blood test, been tested for celiacs disease, had my thyroid checked, have even been tested to see if it was early menopause. I've been on all contraception (i wish I was exaggerating about that but other than sterilisation I've tried it all) my periods are so heavy that the mirena coil got flushed out during one cycle. I'm constantly anaemic when my blood test come back and have been given Mefenamic acid and tranexamic acid but nothing's helped.

The GP was great, it's a new doctor and this is the first time I've spoke to him about my gynae issues. He immediately said it could possibly be endo and it instantly felt like a relief to be told it was something other than a normal painful period and be sent of with more pills. The GP did an internal exam and took swabs, he's referred me for a scan to rule out anything else and I then have to be referred to a gynaecologist.

It's such a relief to be finally taken seriously. I had an emergency scan 2 months ago which showed my left ovary is quite high up compared to my right ovary. It took the sonographer a while to find it, she had to get a second opinion. I'm now wondering if this could be endometriosis pushing the ovary out of place.

Any advice and support anyone has to offer would be great. I know this is all speculation and it may not be endo but your stories of how you were diagnosed may help me prepare for my appointments. Many thanks in advance

[amy-28]

Hi so sorry you haven't had a reply yet! Sounds like you are finally on the right track for getting somewhere with a diagnosis which is great news. Painful periods aren't normal you shouldn't need to be taking time off work so endo does seem like a possibility. I had similar problems with my ovaries and they where stuck to my womb due to endo so not quite where they should of been! For endo to get a true diagnosis and to see the extent of it you would need a laparoscopy so ask them about that. Feel free to message if you have any questions etc I've got stage 4 and had 2 surgeries my last big excision one in jan so be happy to answer any questions you might have xxxxx

[njcook175 in reply to amy-28]

Thank you so much for your reply, it does finally feel like I'm on the right path. I'm currently waiting for my appointment for an ultrasound though the doctor did tell me to be prepared for the fact they may not find anything, after that I'm to ring the doctor so they can refer me to a gynae. Feels like it's gunna be a long road to diagnosis but after 14 years of agony it's probably going to be worth it.

Can I ask what you do for pain relief, the pain in my left side is quite bad, and I'm cramping right through to my back at the moment. I take the mini pill which is helping slow down my periods, some months I won't have one then I'll have a big one and I get spotting in between. When I don't get a period I still get all the cramping as though I'm having what I can only call a phantom period. I'm currently on co-codamol 30mg but this doesn't touch the pain just makes me slightly high. I have a heat pad which does take the edge off slightly. At work I only take the 8mg cocodamol so that I'm not loopy at work but this does nothing at all.

Thanks once again for getting in touch. X

[amy-28 in reply to njcook175]

Hi,

Before my surgery I got put on amitriptyline you take it at next get and I think it shuts the nerves down round your pelvic area I was the same as you and pain meds just weren't working anymore then this didnso maybe ask your dr about it. A scan won't show up endo it can however show if you have an endometrioma cyst or if it maybe looks to see if anything has attached to anything else to give an idea. Xxx