So fed up 😞

[MiaW1]

Hi everyone! I am in desperate need of some advice and just someone to talk to really. I apologise for the long post.

6 months ago I experienced some abdominal pain which came on suddenly accompanied with nausea, back and leg pain as well as this feeling that I could not empty my bladder fully. 5 years ago I had an ovarian cyst of 5cm however, this just dispersed on its own. The symptoms I experienced then were similar to what I was experiencing that day. I put it down to this and perhaps it was another cyst or just a UTI.

However, since that day my life has completely changed. Every single day for 6 months I have this abdominal tenderness which is just below the belly button - it is so tender to touch that I'm on the verge of tears when it is pressed. Some days is worse than others. I suffer with nausea, loss of appetite, feeling full quickly, hot and cold, bloating, back and leg pain, loss of energy and of course the tenderness. I recently ended up in A&E the pain was so bad. It's constantly like someone is sat on me or I have been punched 100 times. This is so debilitating. I've missed so much of uni and at age 19 I am not having any fun or fulfilling my life how I would like. Most days I'm in my house curled up on the sofa watching TV.

So I was referred to gastroenterology who were testing me for IBD. I have had an abdominal ultrasound, colonoscopy and an endoscopy, an MRI scan of the small bowel - not to mention the hundreds of blood tests. The doctors were testing me for IBD because I was going to toilet more often and felt like I couldn't empty my bowels properly (sorry for the detail). However, every single test has come back clear. I have been told it's IBS and just to apply heat pads. I was also given codeine in hospital and this seems to be the only thing which relieves my pain and helps me sleep - but of course these aren't great to take long term.

I used to have extremely heavy periods which were terrible however, I've been on the Depo Provera injection for over a year now which has stopped my periods. The reason I went on this was because of my unbearable period pains.

I'm really at a loss as to what to do now. Could I be experiencing endometriosis? I'm so frightened because I have been losing weight. I am tiny anyway - I have always been 46kg really for these last few years and have never lost or gained weight. However, in the space of a few months I've lost over 5 pounds and am now only 43kg (6 stone just over). I'm extremely underweight for my height and age. No doctor seems worried. I'm so fed up with what to do. I've been told IBS but I'm suffering every single day of my life. Please could someone just offer some advice or if you are experiencing similar symptoms it would be great to hear!

Thankyou for reading my extremely long post!

[Boodie]

I there, I'm sorry your going through crap right now. Have you thought about a teansvaginal scan to check your ovaries and uterus? Do you ever feel sick after eating or are sick?

[MiaW1 in reply to Boodie]

Hey, thankyou for your reply I haven't thought of that no. I have had a pelvic ultrasound way back in October after I experienced the horrendous pain but by then it had subsided and the scan was clear. Eating can make me feel even more sick yes. But before it has simply just been there when I wake up. Moving around too much on some days can make me feel very nauseous too. I have only ever been sick when I was in excruciating pain a couple of weeks ago when I went to A&E but this has been the only time I have actually been sick x

[SadieMae_1kitty]

So sorry you are in this horrible pain! I was told by 2 ER Drs that I have endometriosis, referred to OBGYN, she states this "usually" effects women in teens or 20-35 yrs old, child bearing years, however in my case as I'm in my 40s I have had multiple colonoscopies which showed only inflammation.... when I told them my periods were delayed or heavy and extremely painful they figured it is not menopause, not to mention your symptoms of nausea, not able to have a complete bowel movement, and in March bled from back side beyond control, finally ultra sound showed uterine fibroids and I am scheduled for surgery in July! THEE ONLY THING THAT HELPS IS A HIGH FIBER DIET....! seriously this is such a terrible decease! Fiber, fiber, fiber... Take care and I hope you get diagnosis because it all starts with IBD diagnosis so if you're cleared of that, then endometriosis is pretty accurate.

[MiaW1 in reply to SadieMae_1kitty]

Thankyou so much for your advice! I shall definitely look into a high fibre diet and consider changing what I eat. I don't think I'm going to settle for IBS, I just don't feel well like I used to - I shall push for a diagnosis of endometriosis x

[SarahMow]

Hi,

Doctors tried to diagnose me with IBS and gave me codeine this went on for two year before I finally had a laparoscopy in Feb this year which they found endometriosis. You just have to keep pushing the hospital and your GP.

Hope you get sorted soon x

[MiaW1 in reply to SarahMow]

So sorry to hear you experienced this ongoing for 2 years. I have seen so many doctors and struggle to see the same one which is frustrating in itself! But I'm going to go back and mention endometriosis and see what they come back with. Did your GP refer you to gynaecology or push for the laparoscopy?

Thankyou x

[SarahMow in reply to MiaW1]

It's so frustrating!!

My GP referred me to gynaecology at the RVI and then they gave me the laparoscopy after 8 month. It's definitely worth pushing for x

[MiaW1 in reply to SarahMow]

Ok I shall 100% start pushing for this! Is it still possible to have endometriosis even tho I am on the Depo Provera injection? X

[princessk09 in reply to MiaW1]

I would say yeah because endo can grow on the bladder and bowel x

[MiaW1 in reply to princessk09]

Ok thankyou x

[SarahMow in reply to MiaW1]

Yeah I would say so. I'm on that injection too but going back to hospital next week to see if it's growing on my bowel! x

[MiaW1 in reply to SarahMow]

Very interesting! Thankyou! Hope all goes ok x