Anxious about getting a diagnosis

[oscarwillow]

Hi,

For the past 2 years I have been back and forth to my GP with pelvic pain (particularly on period), recurrent UTI pain (but urine always clear), irregular periods (3 or 4 a month) and painful sex. They always put it down to ruptured ovarian cysts, thrush or normal period pain and I had very few tests because of covid and a busy student health service. A GP mentioned it might be endo so I went on the pill for 2 months but found the side effects unbearable, but it did help the pelvic pain, so came off but the withdrawal bleed was unbearable and the worse pain yet. Also had very painful bowel pain, urinary pain and couldn't use tampons.

My periods only ever last 3 or 4 days though and are only heavy for 2 days. I've been to see a private specialist due to long nhs wait in my area and he says its very likely I have endo but obviously can't be sure. When I was younger my periods were heavy and painful but only ever lasted 3/4 days and started when I was 13.

I have the option to pay for a private laparoscopy next month which I really want but will impact me massively financially as I'm only 21. I'm so worried though that they won't find anything which will be really heartbreaking to have no answers and have paid so much. Feel so anxious either way and so not sure what to do. Does it sound like I have endo? Worried it might all be in my head and I'm making a fuss out of nothing - not had a period for a month now weirdly and almost forgotten what the pain is like and have convinced myself it can't be that bad

Thank you

[CryBaby91]

Hey oscarwillow!

Gosh i could have written that post myself lol! I'm not a doctor, but your symptoms do match up with endo. Have you looked at the endometriosis uk charity website? They have a super helpful page with loads of information on getting a diagnosis, symptoms, treatment etc. It's really useful to go to your GP with as much knowledge about your symptoms as possible.

If you're not already then I highly encourage tracking your periods with a proper app or something similar, match up what symptoms flare at what point in your cycle. When do you get periods of relief etc (if any lol), most importantly when is the pain worse and what symptoms go along with it. Apps are so helpful for this because it is all easy to input! You could then print out the last couple of cycles you've had and take it to the GP. Glow has a function where you can print a chart to take to appointments.

Please please please don't give up on NHS treatment! I was so tempted to do a private laparoscopy because i had waited so long, but I'm glad I didn't in the end because I was eventually seen on the NHS 2 weeks ago. If you go to your GP with all the information and you're strong with them that YOU think you have endo and you have these symptoms, you may then be able to push for a gyne referral. You are entitled (In England) to ask for a referral to ANY hospital within your region, usually within around 10 miles of your home. Doesn't have to be a local hospital I go to the next city over because my local hospital was appalling with me and i demanded a second opinion. I'm glad i did! I want to call that first gyne up and say "Oi, you said my symptoms didn't match with endo, well guess what!". You might have to really push love, and I wish I didn't have to say that but sadly most of us here have spent years banging our heads against the wall before getting anywhere. Please don't give up!

I worried that it wouldnt be endo too lol. On the day of my diagnostic lap I was in tears thinking omg what if they don't find anything! All scans were clear, everyone always said it was in my head. Did the lap and he found moderate endo (stage 3) on both fallopian tubes and a thick band of adhesions that fused my bowel to my anterior wall (basically my womb). I came round from the surgery and the first thing I did was check my stomach. I knew if there was only 1 or 2 holes then they didn't find anything. Looked down and there was 4! I cried with relief tbh. So your feelings of "will they find anything, am I crazy?" Are completely natural. Xxx

[oscarwillow in reply to CryBaby91]

Thank you so much for this, I think after being told so much that it's different things or in my head I've started to believe it but deep down know it probably is endo! hope you're okay and glad you finally got your diagnosis

[CryBaby91 in reply to oscarwillow]

Sadly I think most of us (if not all) have been told it is in our heads, gaslighting is incredibly common in womens health circles unfortunately. Hence why most of us have to spend so much time learning about our bodies, then when we face ignorance from doctors we can be armed with information. I can't recommend highly enough how important it is to research endo and understand what is happening to you, the more you know the better obviously reputable sites lol endometriosis.org is the best place I've found xxx