18 the beginning of endometriosis diagnosis

[xlozzyyxo]

Hello everyone,

My name is Lauren in 18 years old and I have had horrendous heavy/painful periods since I was 14 I never knew why I was leaning over the toilet in pain at such a young at or flooding through my clothes / bedding but I decided to get this checked at 16 I went to the doctors and they prescribed me with the pill , unfortunately it made me worse and I was then dismissed. Lockdown happened a couple months later and I had a horrendous episode where I was screaming on the bathroom floor I was 17 leant over the toilet in pain my bowel movements were so painful and I had shooting pains everywhere I was sweating and shivering and nothing helped . I rang ny doctor and she sent me for an ultrasound but nothing was picked up . I was dismissed again. Fast forward a year later today after 5 days of pain bleeding dizziness and the worst breast pain I decided to contact my doctor she has told me that she is 90% sure it’s endometriosis and I’ve been prescribed with 3 types of medications to help this being the contraceptive pill and painkillers I haven’t been referred to gynaecology just yet as my doctor wants to do some bloods tests etc but I’m hoping that I finally get the answers especially as I’m only young so hopefully I can get the help that is needed x

[EternalSunshine87]

So sorry you're going through this. It was only when I came off the pill that I began to really experience my endo symptoms. Like you, I have experienced excruciating bowel movements. The worst one, I was literally passing stools every few minutes for hours. I literally had a panic attack while on the toilet. I had no idea what was happening. I feel very lucky in that the road to diagnosis has been swift and I've never been fobbed off by anyone. I hope you get the answers you need, but you are most definitely not alone.

[xlozzyyxo in reply to EternalSunshine87]

Thank you I’m so glad I’m not alone , what I’ve noticed is that some periods are worse than others I don’t know if this happens to you or anyone else but this month my blood flow wasn’t heavy but the pain was almost unbearable where as some days when my period is really heavy I don’t have as much pain it seems to be every 2/3 periods when I have a flare up and be on the floor screaming in pain it’s horrible . I also get pains a few days before my period it and after I get a dull ache in my right abdomen . I don’t have constant pain only when I’m due on / on my period but i feel so tired and fatigued after I have had a flare up I don’t know if anyone else relates x

[EternalSunshine87 in reply to xlozzyyxo]

Yeah, I get really tired around my period, but who can blame us with everything our bodies are going through at the time! I'm now back on the pill and having a period every 3 months to see if that improves quality of life. I did get quite a lot of cramping in the 2 weeks after I started on the pill again. I'm waiting to see if this will be a pattern and whether my period will be worse this way. My problem with painkillers are, I never feel like eating so I can't have them. It's tricky. I'm happy not to have a period every month though!

[xlozzyyxo in reply to EternalSunshine87]

I’m the same I’m currently on 3 meds for it but I feel so sick I’ve hardly ate I’m so bloated and I keep getting this dull aching pain in my abdomen I’ve just come off my period and I’ve just started the pill again but I’m now being referred to gynaecology so that they can investigate sooner and hopefully get the ball rolling with it all ! Hope you start to feel a little better soon !

[Berry_blue]

This is like I could of written it!

Sorry you have to go through this. I too was like you and went on the pill from 16-24, then my period got horrific again, went to the docs numerous times but they just said is Dysmenorrhea and I got sent home, fast forward to now, I’m 34 and struggled with infertility for just over two years, gone through fertility checks everything fine apart from they found two cysts on my ovaries which they think are endometriomas. They Didn’t want to further that due to how small they were. Long story short but It’s now taken me to go private to get this sorted and I’m due to excision surgery in a few weeks.

If I knew what I did at your age it would of been different - what im trying to say is be persistent, don’t let them send you home saying it’s just a fancy name for a heavy or painful period! Unfortunately I don’t have the time due to my age to wait it out with the NHS.

Good luck xx

[xlozzyyxo in reply to Berry_blue]

I’m so glad I’m not alone and you can relate to me! I actually work at a hospital and went up to the gynaecology clinic to get some advice off our nurses after my doctor prescribed me medication for it but it means me taking 10 tablets a day which obviously at 18 isn’t something that I want to do as it doesn’t feel natural stopping my period all together I’d rather it be investigated. The nurses spoke with me and said that my gp should have referred me straight away to them so that they could investigate as it wasn’t normal . I have since contact my doctor and asked for my referral to be sent through so fingers crossed she does it for me 🤞🏼I’m sorry to hear about your experience I hope you’re getting the help you need now xx