Endometriosis UK
37,467 members32,927 posts

New Diagnosis

Hi all, I found this app while I was in what I will call and am sure some can recognise as the ‘two week wait from hell’ and found it a great comfort to see others sharing so openly their symptoms and ongoing concerns and answers so I feel happy to share mine in the hope it will do the same for others.

I am 28 years old, and for as long as I can remember I have suffered with my periods, having gone on the combined pill at 16 I was amazed at how productive it was in giving me control of my life fully. I came off at 24 with the hope of starting a family and gradually developed new and horrid symptoms. This took the shape of awful pain, so many trips to the toilet with the most painful bowel movements and diarrhoea generally about 3 days prior to a period starting, after around a year of this, I began to turn a translucent shade of grey and began to get recurrent UTI’s. An ultrasound of my bladder and kidneys showed my first ovarian cyst of 8cm, and the resultant gynaecology appointment was devastating when I was told not a huge amount could be done in reflection of my age and isolated cyst, the combined pill was recommended and I stayed on this for 18 months before braving coming off again. Within 6 months I had worsening symptoms, including bloating, sharp and cramping pain and such frequent and urgent bowel movements I started to fear leaving the house or working for what might happen.

The height of the symptoms occurred around 6 weeks ago, and whilst at work I developed a sudden onset of abdominal pain and made it to the toilet before collapsing and becoming convinced I may pass out from the pain. Lying on the floor, I wondered who might find me. Eventually the pain materialised into vomiting and I went home - and rang my GP the next day, concerned with what had happened years before that it may be serious. I was advised after an hour and a half that I was unable to be seen by a receptionist and they suggested an appointment in 5 weeks time. I knew I was ill, so went to a walk in centre, I had a UTI and severe stomach pain. I noticed though am unsure on why that in cycle these seem to occur between ovulation and period. Always when there’s a bit more activity.

Subsequently, I done what I should have done years previously and registered at a new GP practice, and was swiftly seen by my new doctor, who has so far been nothing short of amazing. If anyone else is getting nowhere with regular issues I would highly recommend changing, I am only frustrated with myself that I was led to believe what I was experiencing was normal. An ultrasound scan the following week revealed a 6cm cyst on both ovaries and smaller ones elsewhere. Within the same week I was tested for the CA125 and this came back raised. I was genuinely terrified and over the two week wait for my referral I had almost convinced myself I was a gonner.

Today, I explained my symptoms to a gynaecologist: persistent bowel issues and urgency, recurrent UTI’s, pain, cramping and by the time a period arrives genuinely feeling at rock bottom. The concoction of ‘survival medication’ ever growing just to make it through the day sometimes. I have now been told that it is highly likely to be endometriosis and am now awaiting a referral to a specialist in this to discuss my treatment options, though surgery is looking likely. They seem certain that it has spread to my bowel given the symptoms I have had, and I suspect myself that there is some lingering in my bladder too, given the pain and symptoms that appear to occur. I live in hope that one day, I may yet have a ‘normal person’ month. And don’t have to try and plan my professional and personal life around my menstrual cycle. I have been incredibly lucky with the friends and colleagues I’ve got, and they are so supportive and just amazing.

This forum lets me know I am not alone, and others out there are likely reading this, or another thread whilst despairing that there is no one else who can understand what this hideous illness can make you feel like.

Love and hugs to you all x

2 Replies

Hi Milly,

Firstly love and hugs to you too!

I really do wish you luck with your journey and hope that it comes to a positive end soon! It sounds like you've been suffering for a long time now.

Well done for being so strong and brave!

It's wonderful to hear that you have supportive friends and work colleagues. I bet that really does make a difference!


1 like

Will be keeping you in my prayers and positive thoughts! :)

1 like

You may also like...