Endometriosis - new to this - lots of questions!

[Mandtmummy]

Hello,

So for some years now I've been struggling with heavy periods, pain and rectal bleeding when I have my period.

I went to the gp who firstly said I was mistaken as rectal bleeding doesn't happen during a period. I then in desperation went back when having a period and asked her to examine me and she confirmed that I was. She then sent me to a colorectal surgeon who I saw after six months who suggested a colonoscopy and seeing a gynaecologist.

The colonoscopy was clear

I saw the gynaecologist in March this year who sent me for a MRI. I then didn't hear anymore but the pain and bleeding had got much much worse. Last period I was dizzy and faint everytime I stood up. I went back to the gp (different Dr) who thought I might be anaemic and has scheduled blood tests. He gave me the number of the secretary at the hospital and I rang up and they said I'm so sorry your file should have been expedited - can you come on Monday?

So I went yesterday and was told the results of my MRI showed my ovaries are stuck together and my bowel is attached to my uterus. They couldn't tell if the bowel has gone into the uterus from the MRI.

The consultant said it was highly probable that I have endometriosis especially since all symptoms stopped whilst I had the implant and it had got steadily worse since regaining my periods.

He kept apologising for not seeing me sooner.

He said my case is going to be discussed at the next weekly Endometriosis forum where they will decide the next steps. This could possibly be another colonoscopy whilst I'm bleeding to investigate or to have a laparoscopy. He said that dealing with endometriosis in the bowel can be problematic. He also suggested they might put me on hormonal treatment.

I am left feeling strangely numb - after being fobbed off for so long it feels weirf someone is saying yes this isn't right.

My questions if anyone can help-

Should I be worried?!

Does anyone have experience of it being treated in the bowel?

Is there anything I can do to make myself feel better in the meantime? I feel very tired most of the time.

I apologise for the long post and would be grateful for any replies

Tracy x

[Lindle]

Where in the UK are you Mandtmummy as treatment pathways vary depending on where you are in the UK?

[Mandtmummy in reply to Lindle]

Thank you for replying, I'm in Stockport - being seen at Stepping Hill - but they did say sometimes cases are dealt with at St Mary's hospital

[Lindle in reply to Mandtmummy]

Just be sure you are being transferred to the tertiary endo centre there (BSGE centre) as that is where severe disease must be treated. I feel sure you will be but the mention of putting you on hormones is a bit concerning as that isn't appropriate as a treatment, only when awaiting a lap by the advanced excision team, but perhaps that was just a general gynaecologist saying it. It's not allowed to mention surgeons or hospitals on here but if you look at the list below you can identify your hospital on there and see the names of the surgeons you should be under:

bsge.org.uk/centre/

The treatment spec is below:

england.nhs.uk/commissionin...

x

[Goiaba]

I am being consulted at the same place, Mandtmummy and feel the same way, like hold information and don't explain everything there is. I am also not from this country, which makes everything twice harder for me. I've received a letter from my gynae confirming Endo in my MRI results and that I'd be referred to the Endometriosis clinics, but that was it. While the 'treatment' she gave me before having the results was the mini pill, she said I should take them for 3 months and I'd have nearly to no period but I'm finishing the second month now bleeding normally, in fact even for more days than usual (escape bleeding everyday since starting the pill). I feel pain everyday, but because I mentioned it is bearable, I think I'm not taken seriously. Is this the correct process? Should I go back to my GP to talk about the fact I can't stop bleeding? I'm completely lost...