Undiagnosed for over a year and still waiting

[esd_97_X]

Last Christmas I was in severe pain which was thought to be a water infection. By the end of January my water infection had cleared up and I was still in severe pain so I had to have my bloods done and swabs which all came back fine but was still in pain. I was sent for two pelvic exams one in March and one in April, which shown a cyst on my right ovary and a polyp in my womb. The doctor assured me the polyp would be no bother and to make an appointment with gynaecology over the cyst which I did. The appointment came in the July but it was over the phone due to covid which I found rather frustrating as I just want to know what the problem is that’s causing me all this pain. I’ve been put on a waiting list for a camera to check my ovaries and since July I’ve ended up in A&E three times waiting 10hours at most after being rushed by my partner due to me not being able to get up off the floor keeled over in pain and to be told they can’t do anything or that there isn’t anything wrong with me is starting to really frustrate me. I have had another episode just last night were I was on all fours in pain and couldn’t get up for an hour and refused to go A&E as I feel like I get pushed aside and left for hours in severe pain. It wipes me out for two - three days which prevents me going to work etc. I have indicators that would suggest endometriosis but without confirmation I’m finding it really hard to deal with as it would of been a year next month when it all started. If anyone has ever had similar pains or any insight to endometriosis I would love to hear as I’ve had enough of people telling me I’m fine.

[Bigsize9foot]

Hi- sorry to hear you’re having such a hard time.

I have (had) a large ovarian cyst on my left ovary which caused me sporadic pain similar to what you mention where I couldn’t walk or stand straight due to the pain. Randomly the pain would subside after taking ibuprofen/paracetomal with half an hour and after a few doses disappeared. Mines was linked to ovulation time.

I’ve just had my cyst removed and there was no real endo found so the pain was clearly coming from the cyst.

I’m not sure what to suggest. The NHS is so overwhelmed just now and the waiting lists are horrendous. Can you push your GP for some stronger pain relief?

[Dee_EndoUK Moderator Endometriosis UK]

Hi esd_97_X

Sorry to hear you've been in so much pain. It sounds as if you're on the waiting list for a laparoscopy, which will certainly determine if you're suffering from endometriosis.

In the meantime, you may want to take a look at a document we have on our website with pain relief options, just in case there's a couple on the list that you haven't tried yet. This can be found at endometriosis-uk.org/pain-r...

We also have some great face-to-face support groups around the country, where you can discuss endometriosis and the issues you're facing with other sufferers. You can find out if there's one in your area by visiting endometriosis-uk.org/find-a...

I'll keep my fingers crossed you're not waiting too long for your procedure. Take care!