Could my symptoms be Endo?

[PinkTurtle3]

Since I was 12 I've had extremely painful periods. I've been on the combined pill for 8 years now (I'm 25) and only have a break every 3 months to reduce pain. I've also been on several types of prescribed painkillers and medication for years. Prior to the pandemic I had been referred to get the mirena IUD fitted, but this has now been delayed.

Despite all of this, the word endometriosis has never been mentioned by any of the countless GP's I've seen. Should it have been?

I've been referred for blood tests and ultrasound scans, but all came back clean. Should I be pushing this further, or is that all that can be done without surgery?

I have painful cramps and back pain during periods (Impacts daily life and painkillers don't help, hot water bottle makes it manageable). I also get bloating during periods, constipation for 3-4 days followed by severe diarrhoea and large, frequent blood clots (size of a 50p, occasionally some bigger). I'm permanently tired and groggy all times of the months and can easily sleep for 12+ hours and still nap! I've also recently started getting nausea and morning sickness when I feel stressed or before work. The Dr has given me anti-sickness medication and diagnosed IBS. Can Endo symptoms be worsened by stress in this way?

I also saw someone else mention they had permanent cold/tonsillitis which they believe is linked to their endo. I've not heard this before, but I had my tonsils out when I was 14 as I suddenly had tonsillitis for 2 years straight! Have others had this?

Sorry for so many questions! Any advice about anything I've mentioned is really appreciated. I feel like I've reached a dead end in terms of diagnosis/treatment and don't know if it is worth pushing it further (I'm not trying to get pregnant any time soon, so feel it may be pointless until then?). I'm also surprised I've had the pill, IUD, blood tests and ultrasound (a lot more than most women seem to get) without endo ever being mentioned to me. Is this usual?

Thanks in advance for any help!

[Princess_11]

Hey PinkTurtle,

I’m pretty new to this page myself so I’ve learnt a lot over the past few days so I’m really not an expert. I say all that to say it’s more than likely your symptoms link to Endo or even Adenomyosis. Both of which I was diagnosed with late last year. I also have always had painful periods since I was about 12 and they’ve worsened over the years but I just thought it was normal and my life. I’m now 31. I also worried about how large my clots were and why I looked like I was 5 months pregnant most days (more so within the last year).

I had an ultrasound a 2 years ago which came back “normal” - they mentioned I had fibroids at the time but said it was nothing to worry about. However having had an ultrasound last year they said it was clear I had endo & possibly adeno as well as an enlarged uterus and fibroids which where pressing on to my bladder.

I think you should push for a second opinion or to be referred to a gyno or have another scan. Either an internal scan or ultrasound (I had an ultrasound both times). Once you get the right diagnosis I think you’ll start to feel less crazy / dramatic lol.

Hang in there and from what I’ve seen elsewhere maybe you should keep a diary being as descriptive as possible. Try and include a food diary, perhaps you can start to monitor what you think is a trigger for increasing your pain.

I hope this helps you a little x

[PinkTurtle3 in reply to Princess_11]

Thank you so much for replying! That's really helpful. The ultrasound was over a year ago so I may ask for another one to check for anything new. I'm guessing if I have bowel symptoms this may not show up on an ultrasound, so definitely worth trying to see a specialist and see what they think. I'm due on next week so will definitely be keeping a diary an hopefully that will help figure something out. Thank you for your help! xx

[Princess_11 in reply to PinkTurtle3]

Yh not sure if it will but the specialist did see a lot of gas in the stomach